Sarc Fighter: Living with Sarcoidosis and other rare diseases

https://www.stopsarcoidosis.org/patient-registry/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 160 | Dan Keota is determined to beat Sarcoidosis or Die Laughing

Mon, 23 Mar 2026 05:00:00 -0500

Dan Keota lives outside Philadelphia. He needs a double lung transplant. It's serious. But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition. Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available. Be sure to listen at the end to hear his first on-stage comedy routine!

Show Notes

Die Laughing: www.dielaughing.org

Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/patient-registry/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 159 | With Sarcoidosis half the battle is just getting to the doctor

Mon, 09 Mar 2026 05:00:00 -0500

Once you receive a diagnosis of Sarcoidosis, you have an answer. But that raises more questions. What medications should I take? Will they work? Is it the right medication? What complications could I face? Do I have the right doctor, or is the right doctor not in my local area? In many cases sarcoidosis means you need to travel to get the care you need. Your local doctors may not have enough experience to deal with your case. That was the situation for Royce Robertson. He spent tens of thousands of dollars just getting to and from his care. That's before he paid for traditional medical expenses. In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel.

Show Notes

Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 158 | For Sarah Bishop it's an uphill battle with Sarcoidosis

Mon, 23 Feb 2026 12:02:04 -0500

Sarah Bishop has a little extra compared to the rest of us. Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit. In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand. Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum. In this episode of the FSR Sarc Fighter podcast, Sarah describes the grueling training and how sarcoidosis makes everything just that much more difficult.

Show Notes

Sarah's Facebook Page https://www.facebook.com/groups/1171838998236662/posts/1171929584894270/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 157 | The Foundation for Sarcoidosis Research rises to the top

Mon, 09 Feb 2026 05:01:00 -0500

The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs.

We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials. From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care.

Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation.

Show Notes

Watch the Reveal Video for the Voice of the Patient Award:

Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/ If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 156 | Janet Mockovciak has tried everything to get her sarcoidosis under control

Mon, 26 Jan 2026 12:31:42 -0500

Janet Mockovciak has been through the wringer. Her sarcoidosis has gone from bad to worse. She has tried all the medications that most patients have used, but they only seem to last for a brief period of time. Then they stop. In the meantime, the sarcoidosis spreads throughout her system. Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back! Listen as Janet describes all she has been through -- with the takeaway being that she is still working to have the life that she wants and deserves.

Show Notes

Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/ If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 155 | Dr. Mark Mallozzi is researching a potential cause of Sarcoidosis

Mon, 12 Jan 2026 11:24:10 -0500

Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing. He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of sarcoidosis tend to spike.

Show Notes

More on Dr. Mark Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/

Donate link https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate Voice of the Patient Report https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf FSR 10 Year Registry Report https://www.stopsarcoidosis.org/registry-report YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #particulatematter

Episode 154 | 2025 Was a great year in the fight against Sarcoidosis

Sat, 27 Dec 2025 16:00:00 -0500

Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good. In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C. In short, this is a good time to be a sarc patient -- as more and more progress is being made and even more is coming in 2026.

Show Notes

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

Episode 153 | A possible connection between Pulmonary Sarcoidosis and Lung Cancer

Thu, 18 Dec 2025 15:00:00 -0500

A new study out of India shows a bit of crossover between sarcoidosis and lung cancer. In this episode of the FSR Sarc Fighter podcast, I'll take a look at the study and what it reveals — including a new drug, Metformin, previously used to treat Type 2 Diabetes, that may show promise based on the study's findings. For what it's worth, I'll also share the terrors of surgery for my ruptured Achilles.

Show Notes:

Donate to FSR: https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025

FSR Biomarker Summit: https://www.stopsarcoidosis.org/fsr-convenes-global-leaders-for-landmark-clinic-alliance-meeting-and-sarcoidosis-biomarker-summit/

Sarcoidosis News Study from India: https://sarcoidosisnews.com/news/new-genetic-clues-connect-sarcoidosis-lung-cancer-risk

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

Episode 152 Basim Karim is fighting sarcoidosis while being HIV positive

Mon, 01 Dec 2025 11:59:00 -0500

Basim Karim is a fighter. He's battled HIV for more than two decades, has had COVID five times, and now has Sarcoidosis in multiple parts of his body. Doctors face a special problem with him because he cannot allow his immune system to be too depressed, or he faces consequences even greater than sarcoidosis. Basim joins me to tell his story.

Show Notes

Basim's Reddit thread: https://www.reddit.com/r/NewToSarcoidosis/s/pmNebor2Ve

Sarcoidosis News Ohio State Study: https://sarcoidosisnews.com/news/sarcoidosis-get-referral-lungs-soon-diagnosis

Sarcoidosis News - Repurposing Drugs: https://sarcoidosisnews.com/news/repurposing-drugs-improves-survival-sarcoidosis-patients-study/

Dr. Thomas Leung: https://www.thomasleunglab.org/

Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs

OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

Episode 151 | Dr. Thomas Leung is using skin research to unravel the mysteries of sarcoidosis

Mon, 17 Nov 2025 05:00:00 -0500

What if the cause and a potential cure for sarcoidosis were hidden in plain view -- on your skin? According to research by Dr. Thomad Leung in Philadelphia, that might be the case. In this episode of the FSR Sarc Fighter podcast, Dr. Leung explains how his team of researchers is using the skin to investigate how the body sends a homing signal to cells that create damaging granulomas in any part of the body, including the lungs, heart, and nervous system. Listen in as Dr. Leung describes breaking down cells and looking for a potential biomarker that could lead to sarcoidosis being diagnosed with a blood test.

Show Notes

Dr. Thomas Leung: https://www.thomasleunglab.org/

Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs

OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

Episode 150 | Chris Cermak has hypercalcemia caused by sarcoidosis

Mon, 03 Nov 2025 21:07:28 -0500

We've talked about a lot of different ways sarcoidosis can affect the body. But this is the first time we've talked to a patient who has hypercalcemia -- where there is too much calcium in the blood. And yes, it can be caused by sarcoidosis. It's a story Chris Cermak is living with, even though his blood calcium reached dangerously high levels.

Show notes:

More from the FSR Gala: https://www.stopsarcoidosis.org/25-gala/

Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs

OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

Episode 149 | A look at Sarcoidosis from 20,000 feet and when to fire your doctor

Mon, 20 Oct 2025 19:59:59 -0500

A lot of people find the podcast because they are trying to figure out what's going on in their bodies. They know they have sarcoidosis, but they don't know what it is, how serious it is, or whether it will get worse or maybe - go away. Then there's the question of multi-organ involvement. How common is it and which organs are most often impacted? In this episode of the FSR Sarc Fighter podcast, a look at a new report from Sarcoidosis News that takes a deep dive on many of those questions. Also -- I had a rough visit with my new doctor at my local hospital, and I'm thinking about finding a new doctor. Should I? You decide.

Feeling good on my mountain bike!

Show notes:

Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs

OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

Episode 148 | The FMLA Clarification Part 2 - A real life story of the perils of trying to stay in a clinical trial and how FSR achieved the FMLA Clarification

Mon, 06 Oct 2025 05:00:00 -0500

It's not always easy to participate in a clinical trial. Even if you want to, how do you get the time off from work? Starting in 2025, thanks to the Foundation for Sarcoidosis Research, there is a provision called the FMLA Clarification, which essentially states that you can participate without fear of losing your job. In this episode of the FSR Sarc Fighter Podcast, Dr. Ennis James, a sarcoidosis researcher and physician at the Medical University of South Carolina, and Tricha Shivas, Chief of Staff and Strategy at FSR join me to talk about how difficult life can be for patients. Dr. James shares a real-life story about a woman who fought to stay in a trial after problems arose at work.

SHOW NOTES

OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

Episode 147 | The FMLA Clarification -- Part 1 Allowing patients to use FMLA to participate in clinical trials

Mon, 22 Sep 2025 05:00:00 -0500

Let's say you or a family member wants to participate in a clinical trial, but the boss doesn't want you to have the time off because of extra visits to the doctor's office. Under new rules spearheaded by the Foundation for Sarcoidosis Research, companies must now allow patients time away from the job without fear of losing their employment. In this special edition of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me, along with Emily Dickens, Chief of Staff, Head of Government Affairs, and Corporate
Secretary for Society for Human Resources Management. Together they will walk us through the new guidelines for HR departments when it comes to allowing employees to participate in clinical trials. @SHRM #SHRM #humanresources #clinicaltrial

Show Notes

FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 146 | A solid dose of perspective and are sarcoidosis patients more likely to get kidney stones?

Mon, 08 Sep 2025 05:00:00 -0500

In this episode of the FSR Sarc Fighter Podcast, it's time to think. Borrowing some thoughts from a man who faced a possibly fatal brain condition, I look at how similar his case is to our own -- bearing in mind that he expresses his case so much better than most people can or could. Also, Sarcoidosis News is out with a study showing that Black Women are more likely to develop kidney stones than other groups.

Show Notes

Eric Markowitz's Essay: https://bigthinkmedia.substack.com/p/what-brain-surgery-taught-me-about

The Big Think https://substack.com/@bigthinkmedia

Black Women and Kidney Stones https://sarcoidosisnews.com/news/sarcoidosis-increases-risk-kidney-stones-black-women-us/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/diagnosed-at-12-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 145 | Scarlett is the youngest sarc patient yet

Mon, 25 Aug 2025 05:01:00 -0500

Scarlette Washlock was diagnosed with sarcoidosis when she was just 12 years old. Her mother, Kelly McBride, had to raise her daughter with all the anguish and uncertainties that come with Sarcoidosis, compounded by Scarlett's youth and her desire to stay active at school. Together they succeeded. Scarlette had a good high school experience and joins me on the podcast from her new freshman digs at Ohio State University, where she hopes a pre-med path is the one she can take. Listen in as Scarlette and her mom discuss their journey as they took on sarcoidosis.

Show Notes

Scarlette's Essays:

Pediatric Sarcoidosis: How My Skin Was Affected 12-18 Years Old - Future of Personal Health

Sarcoidosis News Story on Ocular Sarc: https://sarcoidosisnews.com/news/tailored-progressive-treatment-urged-ocular-sarcoidosis-study

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.youtube.com/watch?v=dwXGeOoXOJU https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/ https://www.newsday.com/.../new-york-emmys-2024-img8jzdl https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464 https://www.facebook.com/cathleen.terrano/

#sarcoidosis #sarcoidosisawareness

Episode 144 | Cathleen Terrano dances on despite Sarcoidisis

Wed, 06 Aug 2025 11:23:16 -0500

Cathleen Terrano has sarcoidosis. It's in her kidneys. In her heart. In her lungs. On her spinal cord. Other places too. And yet she has danced with some famous people and keeps on dancing and teaching dance to people who might otherwise miss out on life's precious moments -- like a father-daughter dance at a wedding. Cathleen rocks bright purple hair so people will ask her about it -- and open a pathway to talk about sarcoidosis. In this episode of the FSR Sarc fighter podcast hear Cathleen's story.

Also an update on FSR's recent awards to young researchers and a big think about how a simple pencil can be a model for us all!

Show Notes

Links to Cathleen's many activities:

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 143 | Why Sarc patients MUST exercise and the New FSR Patient Registry explained

Mon, 21 Jul 2025 11:35:36 -0500

On Episode 143 of the FSR Sarc Fighter Podcast, I have two guests. Taylor Harwood, Senior Research Coordinator for FSR, joins me to explain the new and improved patient registry. Even if you've already registered, there is a small step you need to take to ensure researchers can find and use your valuable information. Also joining me is physical therapist Marion Paetznik, who will tell you why it's so important to get or stay moving if you have sarcoidosis.

Show Notes

FSR Patient Registry https://www.stopsarcoidosis.org/patient-registry/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 142 | Dr. Courtney Montgomery is looking for the cause of Sarcoidosis.

Mon, 07 Jul 2025 05:00:00 -0500

Dr. Courtney Montgomery wants to know what causes sarcoidosis. She's convinced it's in your genes. Working in the clinic at the Oklahoma Medical Research Foundation, she sees patients every week, while she studies the potential link between Sarcoidosis and a person's genetic code. In this episode of the FSR Sarc Fighter Podcast, she goes over the reasons she believes that certain people are more likely than others to develop this rare disease.

Show Notes

More on Dr. Courtney Montgomery: https://omrf.org/research-faculty/scientists/montgomery-courtney-gray/

More on the FSR/ATS grant to Dr. Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/

The Acthar Gel Injector Survey: https://sarcoidosisnews.com/news/acthar-gel-selfject-convenient-easy-use-patient-survey/

Help Royce help you: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode141| A tough patch for me and Royce Roberston rides for all of us.

Mon, 23 Jun 2025 05:00:00 -0500

In this episode Royce Robertson joins me to talk about how he's raising money to make it easier for Sarcoidosis patients to travel to and from their appointments. It can be expensive to travel great distances to the right doctor, as he knows first-hand. Royce and I are also part of a panel discussion on exercise and sarcoidosis coming up at the FSR Summit on June 28. I will also share some personal details about a bit of a difficult time I'm experiencing at a personal level. #sarcoidosis #sarcoidosisawareness

Show Notes

FSR Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/

Help Royce help you: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

More on brepocitinib: https://sarcoidosisnews.com/news/brepocitinib-phase-2-trial-doses-first-cutaneous-sarcoidosis-patients/

Methotrexate Study: https://sarcoidosisnews.com/news/methotrexate-effective-though-slower-treating-pulmonary-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 140 | Getting your questions answered at the 2025 FSR Global Virtual Sarcoidosis Summit

Mon, 09 Jun 2025 05:00:00 -0500

If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit. The Summit is happening on June 28th and 29th. And the deadline to sign up is June 14. Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for the event. Together, they will tell you everything you need to know and what to expect at this year's event.

Show Notes

Scholarship for the FSR Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 139 | Dr. Sotonye Imadojemu talks about Sarcoidosis of the Skin.

Mon, 26 May 2025 05:00:00 -0500

In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis. It's very common, but we don't always talk about it. sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement. Dr. I is an expert working in Boston at Brigham and Women's Hospital.

Show Notes

Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form

More on Dr. Imadojemu: https://physiciandirectory.brighamandwomens.org/details/13366/sotonye-imadojemu-dermatology-boston-chestnut_hill

Kinderdijk: https://kinderdijk.com/

FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html

The study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 138 | Katie Pantea had a hard time even remembering her neuro sarcoidosis

Thu, 15 May 2025 06:58:11 -0500

Katie Pantea has multi-organ involvement of sarcoidosis. But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events. In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall. It also helped that she is a nurse who lives near a sarcoidosis center that could give her the treatment she needed.

Show Notes

Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form

The study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 137 | Dr. Brandon Moss of the Cleveland Clinic talks neuro sarcoidosis

Mon, 28 Apr 2025 05:00:00 -0500

In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis. Dr. Moss also happens to be my doctor. I've told him he can use my situation as a case study for the sake of this discussion. So you may hear a lot about my spinal cord. Hey! It's all for the greater good. also in this episode, it's time to give to FSR. You can participate in a study by NORD -- dealing with rare diseases-- and the story of why FSR is involved with the cleanup after the California Wildfires in January.

SHOW NOTES

Participate in the Living Rare Study by NORD www.livingrarestudy.org.

Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form

More About Dr. Brandon Moss: https://my.clevelandclinic.org/staff/23790-brandon-moss

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness

Episode 136 | A big Announcement for John and Sarah Bishop joins from halfway around the world to share her Sarcoidosis story.

Mon, 14 Apr 2025 05:00:00 -0500

Sarah Bishop is busier than most people. She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand. But she started having trouble doing even normal things. She would get so tired and out of breath that her basic activity was nerly down to nothing. But nobody could figure out what was wrong with her. Sound familiar? It was sarcoidosis. Sarah heard the Sarc Fighter podcast and reached out saying she wanted to share her story in the hope that it would help other people.

Show Notes:

FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/
2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/
Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness

Bonus Episode | Leaning in on equity in Clinical Trials

Mon, 07 Apr 2025 09:58:19 -0500

Bonus Episode of the FSR Sarc Fighter podcast. In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials. Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate. Thanks to their work, participation is now covered under FMLA - meaning you can take time off from work to go to the doctor or the clinic without fear of losing your job. This is a huge win for researchers and all of us in the rare disease community. Listen also as Sarc fighter Karen Colemen tells us how sarcoidosis has slowed her dancing.

Show notes:

News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 135 | April is Sarcoidosis Awareness Month!

Mon, 31 Mar 2025 10:18:43 -0500

April is Sarcoidosis Awareness Month, and it's time to let people know that we are all "Facing Sarcoidosis Together," which is the theme for 2025. In this edition of the FSR Sarc Fighter podcast, I talk with Cathi Davis, Director of Communication and Marketing for FSR, along with fellow sarc fighters and volunteers Theresa Govan and Susan D'Agostino. Hear about all FSR has planned for April and how sarcoidosis has impacted Susan and Theresa's lives.

Show Notes:

FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/
2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/
Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness

Episode 134 | Dr. Ravi Karra of Duke University discusses his research on Cardiac Sarcoidosis and its causes.

Mon, 17 Mar 2025 05:00:00 -0500

The Foundation for Sarcoidosis Research recently awarded two grants to further our knowledge of cardiac sarcoidosis. One of them went to Dr. Ravi Karra, MD, MHS, Associate Professor of Medicine and Pathology at Duke University. Dr. Karra is investigating what causes cardiac sarcoidosis, and the best way to treat it. He joins me on the Sarc Fighter Podcast to talk about his findings and his theory as to what might cause sarcoidosis in some people.

Show notes:

FSR awards two grants for research on cardiac sarcoidosis: https://www.stopsarcoidosis.org/fsr-doubles-investment-in-cardiac-sarcoidosis-research-with-200000-in-grants-to-advance-diagnostic-and-treatment-breakthroughs/

Duke University Sarcoidosis Clinic: https://medicine.duke.edu/divisions/pulmonary-allergy-and-critical-care-medicine/our-programs-and-centers/sarcoidosis-clinic

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://bionews.com/keepin-it-rare/

#sarcoidosis #sarcoidosisawareness #

Episode 133 | FSR funds new research and an email from New Zealand

Mon, 03 Mar 2025 05:00:00 -0500

In this Episode of the FSR Sarc Fighter podcast, Spring has sprung in Virginia, and John is fueling his optimism for the season with news from the Sarcoidosis world, including a rare disease video series that spotlights sarcoidosis and the announcement of some major grants from FSR to Sarcoidosis researchers.

Show Notes:

Watch the video featuring Kerry Wong and Dr. Al on how to deal with Sarcoidosis and talk about it in a meaningful way.

More about the FSR research Grants: https://www.globenewswire.com/news-release/2025/02/03/3019714/0/en/Foundation-for-Sarcoidosis-Research-FSR-Announces-300-000-in-Grant-Funding-to-Improve-Diagnosis-and-Treatment-of-Sarcoidosis.html

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #

Episode 132 | Dr. Arthur Yee on the history of sarcoidosis and a call out to rheumatologists everywhere

Mon, 17 Feb 2025 05:00:00 -0500

Dr. Arthur Yee of Hospital for Special Surgery in New York City, believes rheumatologists are uniquely qualified to treat Sarcoidosis -- yet many of them shy away from sarc patients. In this episode of the FSR Sarc Fighter Podcast, Dr. Yee explains why sarc patients can be scary to doctors. He also looks at the history of Sarcoidosis and the treatment patterns that have evolved over time. He also explains what beryllium miners have in common with people who have had tattoos -- and how all of that relates to sarcoidosis.

Show Notes:

More on Dr. Arthur Yee: https://www.hss.edu/physicians_yee-arthur.asp

What is a TNF inhibitor: https://www.webmd.com/rheumatoid-arthritis/tnf-inhibitor-inflammation

Why Rheumatologists need to be more active in treating Sarcoidosis Patients: https://www.the-rheumatologist.org/article/the-rheumatologists-role-in-sarcoidosis/?singlepage=1

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

#sarcoidosis #sarcoidosisawareness #

Episode 131| A well-designed and successfully conducted clinical trial with very clear negative results is the second-best outcome in drug development

Mon, 27 Jan 2025 05:00:00 -0500

Despite high hopes and promise from the drug Namilumab, Kinevant Sciences is reporting that the drug was not effective in treating Sarcoidosis. A well executed clinical trail showed that the drug simply didn't make a difference for sarcoidosis patients. In this episode of the FSR Sarc Fighter Podcast, two of the leaders at Kinevant join me to talk about the results of the clinical trial and to look at what science learned from the study. Also joining me is FSR CEO Mary McGowan who helps shape the perspective of the outcome and to help us understand that while Namilumab did not turn out to be the drug we hoped, there is still a path forward in the fight against Sarcoidosis.

Also have you seen the new Netflix mini-series in which one of the characters has Sarcoidosis called No Good Deed? I have. And I'll tell you what you need to know, without any spoilers.

#sarcoidosis #namilumab #kinevant #sarcoidosisawareness #NoGoodDeed

Show Notes:

News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 130 | New Year, New Life.

Mon, 13 Jan 2025 05:00:00 -0500

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background.

Show notes:

Kerry Wong on The new Netflix show No Good Deed: https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/

Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Center in the Square in Roanoke: https://www.centerinthesquare.org/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 129 | Karen Coleman is a dancer who had to slow her feet thanks to sarcoidosis

Mon, 30 Dec 2024 11:59:38 -0500

Sarcoidosis snuck up on Karen Coleman. A dance instructor, she couldn't figure out why she wasn't keeping up in her jazzercize class. After plenty of time with doctors and more CAT Scans than she would like, she discovered she was suffering from pulmonary Sarcoidosis.

Show notes:

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484

Center in the Square in Roanoke: https://www.centerinthesquare.org/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 128 | A year of major accomplishments - and how you can help the Foundation for Sarcoidosis Research

Mon, 16 Dec 2024 10:31:16 -0500

We are making progress against Sarcoidosis, whether it's new treatments or outreach to patients or even the FDA, the foundation for Sarcoidosis Research is making serious progress. In this episode of the FSR Sarc Fighter Podcast, Cathi Davis and Jennifer Bulandr join me to look back at all the advancements we have made in 2024 and they look ahead to what we can expect in 2025. We will also talk about how FSR needs your support to continue to make these inroads, with its Gratitude and Giving campaign. This is your chance to remember the organization that if fighting your cause as we reach the end of 2024!

Merry Christmas and Happy Holidays!

Show notes:

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484

News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 127 | Mariza Löb Talks about her life with Cardiac Sarcoidosis

Mon, 02 Dec 2024 05:00:00 -0500

Mariza Löb was minding her own business, cooking dinner for her family when suddenly something wasn't right. In this episode of the FSR Sarc Fighter podcast, Mariza talks about how paramedics took her to the hospital and her journey with sarcoidosis began.

#sarcoidosis #sarcoidosis awareness #cardiacsarcoidosis @foundationforsarcoidosisresearch

Show notes

Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/

Mindfulness The Sound of Silence with Susan D'Agostino https://www.stopsarcoidosis.org/wellness-webinar-series/

Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/

My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trials

Tue, 19 Nov 2024 12:37:09 -0500

In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement. The research found that if you have it only in your heart it may actually be more serious. Also, FSR just released information that will give you a sigh of relief if you want to participate in a clinical trial. I also riff a bit about election night 2024, covering a Donald Trump rally, and a speech on the difficulty of sharing scientific data with the viewing public on TV news.

Show notes

Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/

My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 125 | All about our session with the FDA as the Sarc community makes its case.

Mon, 04 Nov 2024 12:49:18 -0500

In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA. John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with. How hard it is to live with this disease and how few medicines are available to treat it. The meeting happened Monday, October 28th in Washington, D.C.. In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA. #sarcoidosis

Show notes

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 124 | FSR CEO Mary McGowan on how we are taking the sarcoidosis message to the FDA

Mon, 21 Oct 2024 05:00:00 -0500

On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us. On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion. On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives are like. How insufficient current medications can be. And, how badly we deserve new treatments and yes even a cure for sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me to talk about this session with the FDA, what it looks like, why it's important and how you can join in. Please give this podcast a listen -- and please sign up now to join in on October 28th.

Show notes

Join the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 123 | Stephanie Mizell is helping you beat Sarcoidosis while she struggles with her own sarc symptoms

Mon, 07 Oct 2024 05:00:00 -0500

Stephanie Mizell has good days and bad days. And she doesn't know what it will be until she wakes up and breathes. Such is the life of a young mother with sarcoidosis. Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents. She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and skills. Listen in as she tells how she learned of the job with the Foundation, and how she now uses all the tricks of the trade to make sure our social media presence is felt by as many people as possible.

Show notes

Join the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 122 | Lindsay Lawrence was a surfer until sarcoidosis pulled her under

Mon, 23 Sep 2024 05:00:00 -0500

Lindsay Lawrence was the picture of health. Active, mother of two children, healthy eater. All the things. But something just wasn't right. It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis. In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body. In this episode of the FSR Sarc Fighter Podcast, Lindsay shares her story, including her terrible bout with prednisone.

Lindsey -- with facial swelling from prednisone.

Show Notes

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Wade's Go Fund Me: https://www.gofundme.com/f/support-wade-allie-medical-life-expenses?attribution_id=sl:1bcda970-9100-46d6-884b-82c1a3ee4239&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link

Episode 121 | Wade Tomlinson needed a lung transplant

Mon, 09 Sep 2024 05:00:00 -0500

The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson. His lungs were wracked with damage from sarcoidosis. So when he got covid it was the punch his body couldn't handle and he needed to take drastic action. Wade got on several waiting lists for a lung transplant and then waited for the call. In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the call came in and the series of events that led to him becoming a recipient. Let's just say it wasn't clear-cut. Listen in as Wade tell his story and brings up to date on how he is feeling six months after his surgery.

Also in this podcast -- FSR's Stephanie Mizell joins me for a quick explanation of the Foundation's most recent fundraiser!

Show Notes:

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://link.springer.com/article/10.1007/s11606-021-07310-6

Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble

Mon, 26 Aug 2024 05:00:00 -0500

Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space. And suddenly he found himself dealing with a rare disease - sarcoidosis. He says he was feeling fine and went for a routine check-up and discovered everything was far from fine. Dr. Bharucha describes his journey through diagnosis and discovery as he fights back against the disease. But what does a researcher do when presented with something like this? They present a poster to colleagues urging them to consider pushing the use of heart rate monitors in more people -- so heart issues become apparent much sooner!

Below is the poster he present to the American Thoracic Society entitled Multisystemic Sarcoidosis Culminating in Asymptomatic Complete Heart Block.

SHOW NOTES

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Kamal's Papers on Sarcoidosis:

https://www.kevinmd.com/2023/08/heart-disease-in-the-shadows-a-closer-look-at-cardiac-sarcoidosis.html

https://www.linkedin.com/in/kamal-bharucha/

Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 119 | Jessica Soules deals with Neurosarcoidosis

Mon, 12 Aug 2024 05:00:00 -0500

When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system. That's what Jessica Soules is dealing with. A long-time fitness instructor, sarc has taken the bounce out of her step. In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend. In this episode she talks about her own struggles with sarcoidosis and a little about her group called Jonnie's Goodguys -- named after her friend who suddenly dropped dead one day while at work.

Show Notes:

Jonnie's Goodguys: https://jonniesgoodguys.org/

Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN:

Biking 4 Boomers https://www.youtube.com/@biking4boomers

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSR

Mon, 22 Jul 2024 05:00:00 -0500

Zombie is the theme song for the FSR Sarc Fighter podcast. If you listen, you know.

Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it. I didn't expect much. But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song. You've been hearing it ever since. Meanwhile Mark's health has been up and down, sometimes seriously down. And -- his wife and caregiver Caeleigh, is now stepping up and running the New York City Marathon as an official FSR fundraiser. So she also joins me today.

In addition, podcast "regular" Royce Robertson met me on a bicycling journey across New York State, where I interviewed him about his health and his own fundraising effort through cycle4sarc.

It's a big Episode!

Mark and Caeleigh!

Riding with Royce!

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened.

Mon, 08 Jul 2024 05:00:00 -0500

Renwick Brutus has an unusual name and a story to match. He discovered he had sarcoidosis long ago now he's working through the disease and its complications. Including the time doctors were ready to perform surgery on his brain only to... Well, I'll let Renwick finish the story.

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis

Mon, 24 Jun 2024 05:00:00 -0500

XTMAB-16, a drug now in clinical trials has been developed by Xentria. In this episode of the FSR Sarc Fighter podcast, Noopur Singh, Vice President of marketing & Patient Affairs, and Tom Matthews, Vice President for Clinical Development join me to explain how XTMAB-16 works in the body as a "referee" to control our body's immune responses. Listen in as we learn more about one of the most promising reasons for hope in the fight against Sarcoidosis.

Show notes:

More about Xentria: https://xentria.com/who-we-are

More about XTMAB-16: https://xentria.com/clinical/xtmab16

Join the Clinical Trial: https://xentria.com/clinical/xtmab16-phase-2

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party.

Tue, 04 Jun 2024 11:23:18 -0500

In Episode 115 of the Sarc Fighter Podcast, Andrea Maione fights to keep things going as she deals with the aftermath of the pandemic while dealing with the increasing onset of Sarcoidosis symptoms.

Show Notes

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers

Jonathan on Instagram: https://www.instagram.com/jonkerlin/

The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA

Through the Griffen Door Podcast: https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199

Jonathan's fundraising page: https://stopsarcoidosis.rallybound.org/SuperCarlinBrothers

Royce's Fundraising page: https://stopsarcoidosis.rallybound.org/cycle4sarc

Matthew's Fundraising page: https://stopsarcoidosis.rallybound.org/Member/MyPage/2590390/Mathew-Hall

The FSR Coalition for Clinical Trial Equity: https://www.stopsarcoidosis.org/fsr-launches-the-coalition-for-clinical-trial-equity-to-address-barriers-faced-by-black-patients/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser

Mon, 20 May 2024 21:39:36 -0500

In Episode 114 of the FSR Sarc Fighter Podcast, a member of the Super Carlin Brothers shares how he is using his significant social media presence to raise money for the Foundation for Sarcoidosis Research. Yes, that's Carlin -- the same name as mine. In this case it's my oldest son Jonathan -- whose YouTube channel has more than 2-million subscribers. Add to that a big presence on Tik Tok, Instagram, podcasts and other platforms and you have a way to reach, well -- a LOT of people. In this episode Jonathan talks about why he wanted to do an FSR fundraiser, how it's going so far - and of course how YOU can help!

I hope you'll listen in as Jonathan and I share a fun conversation about his idea and what it's like growing up, "Carlin!"

Show Notes

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers

Jonathan on Instagram: https://www.instagram.com/jonkerlin/

The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA

Through the Griffen Door Podcast: https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 113 | Kinevant Sciences makes progress with its drug Namilumab

Mon, 06 May 2024 05:01:00 -0500

In Episode 113 of the FSR Sarc Fighter podcast, John is joined by Kinevant Sciences CEO Bill Gerhart and the Senior Director of Patient Advocacy Rayne Rodgers. The team at Kinevant is excited to share the news of the progress they are making with their drug, Namilumab as a potential new therapy for sarcoidosis patients.

SHOW NOTES

Kinevant Sciences: https://kinevant.com/

Namilumab: https://kinevant.com/research/

The original Interview with Bill and Rayne: https://beatsarc.podbean.com/e/episode-69-kinevant-is-working-on-namilumab-a-potential-new-drug-for-sarcoidosis/

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.

Mon, 22 Apr 2024 05:00:00 -0500

Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma. Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis. Sanjay joins the podcast from Brazil, just one of the countries around the world, where the drug is in clinical trials. He will discuss how much more testing is needed and when the drug could become available to sarcoidosis patients.

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month!

Mon, 08 Apr 2024 05:00:00 -0500

Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow sarc fighter Mathew Hall, who is an Ironman triathlete, who found himself in a hospital bed -- unable even to take a walk down the hall. He joins the show as well to share his story and to talk about his plans to bounce back to the extent he can -- and to use it to raise awareness and some funding for FSR.

Show Notes

Support Mathew https://stopsarcoidosis.rallybound.org/steps-for-sarc-2023/Member/MyPage/6333308/Mathew-Hall

Sarcoidosis awareness Month 2024 https://www.stopsarcoidosis.org/saysarcoidosis/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 110 | Walgreens is helping to fight Sarcoidosis

Mon, 25 Mar 2024 08:54:06 -0500

In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers. Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease needs to be recognized as a big problem for the medical community. Listen in as Melissa Pharo of Walgreens and Angela O'Malley of FSR join me to talk about how this major pharmaceutical chain recognizes the needs of the sarcoidosis community.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

FSR awards $100,000 in Grants: https://w ww .stopsarcoidosis.org/fsr-awards-1 00000-in-support-of-cardiac-sarcoidosis/

More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon

Mon, 11 Mar 2024 05:00:00 -0500

In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis. She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic. Meanwhile, Royce Robertson returns with another ambitious fundraiser for sarcoidosis, and the Foundation for Sarcoidosis Research.

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey.

Mon, 26 Feb 2024 14:01:10 -0500

Perry Montoya is a travel writer and tour guide. He's led people through the holy sites around Jerusalem and understands the history of the Bible. Now he's learning to understand and cope with Sarcoidosis. Listen in as he details the demands of his disease including multiple organ involvement. Despite this setback, he remains optimistic and is looking for ways to help others. He also discusses a rare disorder within the sarcoidosis space known as Heerfordt-Waldenstrom Syndrome.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

More onHeerfordt-Waldenström syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595615/

FSR awards $100,000 in Grants: https://w ww .stopsarcoidosis.org/fsr-awards-1 00000-in-support-of-cardiac-sarcoidosis/

More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/

No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/

More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still.

Mon, 26 Feb 2024 12:51:36 -0500

Mark Simbrowsky is a big-time runner. He runs marathons. But Sarcoidosis said, "Not so fast." Mark suffers from cardiac sarcoidosis. He went from being the fittest person in the room to a hospital bed, and nobody knew why. Now after a long journey, he is returning to his old form -- but it hasn't been easy.

This episode of the Sarc Fighter Podcast is presented by aTyr Pharma.

Show Notes

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

More onHeerfordt-Waldenström syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595615/

FSR awards $100,000 in Grants: https://w ww .stopsarcoidosis.org/fsr-awards-1 00000-in-support-of-cardiac-sarcoidosis/

More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/

No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/

More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 106 | Rachelle DeMaria just wants to launch her life

Mon, 12 Feb 2024 05:00:00 -0500

Rachelle DeMaria lives in Colorado Springs, where the scenery is beautiful and as they say, life is worth living. Rachelle had just finished cosmetology school and was getting ready to open her business. Then one day something in her back didn't feel right. After exhaustive testing doctors diagnosed her with Sarcoidosis. Her diagnosis came at the height of the pandemic -- which just made matters worse. But now the nation is healing, but Rachelle is still struggling.

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

The heart study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 104 | John Martin thought it was time to get his affairs in order.

Mon, 15 Jan 2024 05:00:00 -0500

In episode 104 of the FSR Sarc Fighter Podcast, John Martin talks about how a routine trip to the doctor stopped him in his tracks. As is often the case is was a sarcoidosis related misdiagnosis. The good news is that he does not have cancer as his doctor suspected. On the other hand, sarcoidosis has dealt him a few setbacks and he must now live life differently. Listen in as he shares the story of how everything changed.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

The heart study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us.

Mon, 01 Jan 2024 05:00:00 -0500

Happy New Year from the Sarc Fighter Podcast. To start the year off, I have a look at a psychological concept called the Zeigarnic effect.

Don't worry about the big name, it will all make sense when you listen. But it has to do with how your brain discards information it no longer needs to free up room to process other thoughts. By doing this, it helps us reduce stress because our brains are not overloaded with clutter. Makes sense right? That's what closure is all about. Ok -- that happened, I've dealt with it and I can move on. But if you can't complete that thought loop or task, and it remains open -- then it lingers in your brain and drives you nuts!

In episode 103 of the Sarc Fighter podcast, I look into how that makes dealing with sarcoidosis difficult at best. #zeigarnic

Oh yeah -- and I'll tell you what this fish tank has do to with it too.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

FSR awards $100,000 in Grants: https://w ww .stopsarcoidosis.org/fsr-awards-1 00000-in-support-of-cardiac-sarcoidosis/

More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/

The Freakonomics Podcast: https://fr eakonomics.com/podcasts/

No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/

More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 102a | Sherron Fantauzzi Is fighting the good fight.

Fri, 29 Dec 2023 15:25:40 -0500

Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.

Note: I am re-uploading this podcast after discovering a bad edit in the first draft. That's all on me. Sorry for making you hear all kinds of stray audio on the first one.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Sherron's Talk show "Small Talk" http://w ww.youtube.com/@small_taaalk541

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 102 | Sherron Fantauzzi Is fighting the good fight.

Mon, 11 Dec 2023 12:03:09 -0500

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Sherron's Talk show "Small Talk" http://w ww.youtube.com/@small_taaalk541

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he’s pushing on.

Mon, 20 Nov 2023 19:45:00 -0500

Andy Lacher knew something wasn't right when his heart rate wasn't right on a bike ride with his wife. It was the beginning of a year of doctor's visits until the ultimate diagnosis of sarcoidosis.

Show Notes:

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 100 | John Mockovciak is a caregiver and philospher when it comes to Sarcoidosis

Mon, 06 Nov 2023 20:05:49 -0500

John Mockovciak spends a lot of time helping his wife, Janet travel her sarcoidosis journey. And for a couple who hike and ski and seek the lifestyle they've always wanted, it can be a lot of work for both of them. Yet somehow they get down the mountains in the snow, and to the iconic places so many people want to visit. But it takes a certain mindset and understanding, that John shares with listeners in this episode of the FSR Sarc Fighter Podcast.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 99 | How to meet NY Yankees great Bernie Williams, and FSR’s Manny Lozano on the power of the sarcoidosis community

Mon, 23 Oct 2023 05:00:00 -0500

In Episode 99 of the FSR Sarc Fighter podcast, we learn Yankees great Bernie Williams is using his remarkable talent as a musician to help people with Sarcoidosis. We also meet Manny Lozano who is in charge of building the sarcoidosis community through FSR. Manny spent more than 20 years in the Navy including some heavy duty tours. Now he brings that perspective, and experience as a Navy Hospital Corpsman to our community as he helps to build alliances to strengthen the programs available to all of us.

Show Notes

Attend the Bernie Williams event and the FSR Annual Summit: https://www.stopsarcoidosis.org/summit-2023/

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

More on Manny: https://www.stopsarcoidosis.org/about/staff/

MORE FROM JOHN:

John's Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose Sarcoidosis

Mon, 09 Oct 2023 05:00:00 -0500

Dr. Nancy Lin at Johns Hopkins is working on a way to quickly diagnose Sarcoidosis - at last compared to the current ways it is being done. She is looking at our micro RNA to see if there is something different in sarcoidosis patients. Her research is being funded by a $150,000 grant from the Foundation for Sarcoidosis Research. Not only does it appear promising, but it may one day open doors to a cure. Listen to this fascinating conversation as Dr. Lin explores the root causes of sarcoidosis as far as we currently understand it.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

More on Dr. Nancy Lin https://www.stopsarcoidosis.org/fsr-awards-2022-2024-sarcoidosis-research-fellowship-to-dr-nancy-lin-of-national-jewish-health/

(Note: Dr Lin recently moved from National Jewish Health to Johns Hopkins)

Meet Olympic Cyclist Jennifer Valente: https://en.wikipedia.org/wiki/Jennifer_Valente

More on Kevin Moore's Sarc Battle: https://voice.vumc.org/a-mysterious-heart-ailment-almost-killed-kevin-moore-it-took-a-vanderbilt-team-to-pull-him-through/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time.

Mon, 25 Sep 2023 05:00:00 -0500

Attorney Joel Rosen woke up one day and he wasn't feeling well. He thought maybe it was a cold. But he just couldn't get to feeling better. That sent him through a series of tests that eventually led to a diagnosis of sarcoidosis. As an attorney, he had already generously loaned his talents to several non-profits. And now we can add the Foundation for Sarcoidosis Research to the list. Joel is the newest board member for FSR, and in this episode of the Sarc Fighter podcast, he talks about how it took months to find a diagnosis and how he became more and more involved with the work FSR is doing to help patients cope, and researchers find treatments and maybe one day, a cure.

Show Notes

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

More on Joel Rosen: https://highswartz.com/high-swartz-news/sarcoidosis-board-member/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN:

John's Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause!

Mon, 11 Sep 2023 19:07:43 -0500

In Episode 96 of the FSR Sarc Fighter Podcast, fellow Sarc Fighter Royce Robertson returns to talk about his epic adventure while raising money for the cause. Meanwhile a small study in Japan suggests methotrexate may not be the answer for some Cardiac Sarcoidosis patients.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

The Methotrexate article: https://sarcoidosisnews.com/news/methotrexate-no-better-than-prednisolone-cardiac-sarcoidosis-poor-responders/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

email Royce Robertson roycelrobertson@gmail.com

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective.

Mon, 28 Aug 2023 05:00:00 -0500

Show Notes

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Episode 77 interview with Dr. Christen Vagts https://beatsarc.podbean.com/e/episode-77-covid-vaccines-and-sarcoidosis-surprising-new-research-from-the-university-of-illinois-chicago/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN

John's Border Coverage: https://www.wsls.com/news/local/2023/07/24/videos-day-1-on-the-frontline-with-john-carlin-at-the-us-mexico-border/

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

We all know how lousy sarcoidosis is. How it messes with our lives and makes us wish it wasn't there. It makes you wonder how you happened to be the one who was struck by lightning. (Listen on for more on that analogy!) Imagine a vacation where everything goes wrong -- or at least, not according to plans and dreams. Add in some significant health issues by family members and you have the makings of a good story! And a solid dose of perspective. This was my vacation this summer. Also, FSR has awarded Dr. Christen Vagts $150,000, to further her research is severe cases of pulmonary sarcoidosis. Dr. Vagts was a guest on the FSR Sarc Fighter podcast in December of 2022. There is a link to that episode below, if you would like to go back and listen.

John rides on the causeway from Burlington, Vermont. The best part of his vacation!

Episode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time?

Mon, 14 Aug 2023 19:39:40 -0500

Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording. At the time he knew he had sarcoidosis, but he didn't really know what was in store. Now, months later he is much better acquainted with sarc, but still has an optimistic outlook.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

Support Tony's fundraiser! https://stopsarcoidosis.rallybound.org/TonyHaskel

Tony's email: tony.haskel@gmail.com

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard.

Mon, 31 Jul 2023 10:40:50 -0500

In this episode of the FSR Sarc Fighter Podcast, I tested my health as I was embedded with the National Guard, patrolling the U.S. - Mexico border at Eagle Pass, Texas. Temperatures soared up to 103 degrees, as I worked to report on the battle between migrants wanting to cross into the United States, and authorities who want them to come through legally. It's a daily battle as the migrants cross the Rio Grande River, but come up against the concertina wire or C-wire barriers keeping them from crossing into Texas. In this Episode, I talk about what it was like to witness the stand off, as the heat and stress test my own strength and resolve as I deal with Sarcoidosis.

John on the border as a group of migrants enters the United States, near Eagle Pass, Tx.

Show notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

Tony Haskins KISS fundraiser https://stopsarcoidosis.rallybound.org/TonyHaskel?tab=Dashboard

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN

John's Border Coverage: https://www.wsls.com/news/local/2023/07/24/videos-day-1-on-the-frontline-with-john-carlin-at-the-us-mexico-border/

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis

Mon, 17 Jul 2023 11:28:27 -0500

Dr. Stephen Tilley is an Associate Professor of Medicine at the University of North Carolina. He specializes in lung disease with a concentrated effort on sarcoidosis. He is researching new methods and tools to combat the disease, by looking at the response our bodies create to different pathogens -- which could lead to a greater understanding of the cause and treatment of Sarcoidosis. In addition, Dr. Tilley believes that we may have inhaled something that ultimately causes our bodies to trigger the immune response that becomes sarcoidosis. In the interview, he will discuss his beliefs and why some people get sarcoidosis and others do not.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

More on Dr. Stephen Tilley: https://www.med.unc.edu/medicine/pulmonary/people/tilley/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard.

Mon, 03 Jul 2023 05:00:00 -0500

In Episode 91 of the FSR Sarc Fighter podcast, John shares two reports about developments in the treatment of sarcoidosis. He looks at recent studies published in Sarcoidosis News that show promise for aTyr Pharma's efzofitimod, currently in clinical trials, and also a report from Sweden that shows the difficulty in diagnosing neurosarcoidosis without an invasive and dangerous biopsy.

Show notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

The study about neurosarcoidosis: https://sarcoidosisnews.com/news/few-patients-get-definite-neurosarcoidosis-diagnosis-study/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlights

Mon, 19 Jun 2023 05:00:00 -0500

Matthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow. His normal pep on the basketball court just wasn't there. What WAS there was sarcoidosis. Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness.

Show notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

Back episodes from folks at the gala:

Erica Courtenay Mann: https://podcasts.apple.com/ca/podcast/episode-55-erica-courtenay-mann-has-sarcoidosis-on/id1499587273?i=1000551017276

Warren Robinson: https://beatsarc.podbean.com/e/episode-50-warren-robinson-s-father-died-suddenly-and-the-family-struggled-to-find-out-why/

Calvin Harris: https://www.youtube.com/watch?v=X1BJS2VMJSY

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall.

Mon, 05 Jun 2023 05:00:00 -0500

We don't know what causes Sarcoidosis, but we are getting closer and closer. A part of that research is coming from genetic experts at 23andMe. The genetics company has worked with thousands of people to study their DNA -- and to drill down to see if there is a connection between our genes and whether we get Sarcoidosis. Their findings were presented at an FSR Townhall forum hosted by Sarc Fighter Podcast Host John Carlin. The panelists include:

C. Ann Scott- Woman of Color Patient Advisory Committee, Foundation For Sarcoidosis Research, Dr. Courtney Montgomery- Director of the Sarcoidosis Research Clinic at the Oklahoma Medical Research Foundation, Mary McGowan – Chief Executive Officer, Foundation for Sarcoidosis Research, and Dr. Suyash Shringarpure – Senior Statistical Geneticist of 23andMe.

Show notes

Watch the Town Hall on YouTube. https://youtu.be/S2VLXmsTrBY

More about 23andMe https://www.23andme.com/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Together they discussed the methods they use for the research as well as important issues of privacy, and the findings to date.

Episode 88 | MaryKay Reidenbach has been fighting the fight for 28 years.

Mon, 22 May 2023 05:00:00 -0500

Sarc Fighter MaryKay Reidenbach has been fighting sarcoidosis for close to three decades. It's invaded so many parts of her body, it's hard to figure out where it's the worst. But she keeps plugging along, trying to live her best life, and largely doing so. Hear her story in this episode of the FSR Sarc Fighter Podcast.

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids.

Mon, 08 May 2023 05:01:00 -0500

Rebecca Stanfel is a Sarc Fighter who also happens to be a wonderful writer -- to the point that national publications share her work. She recently published a blog in the Huffington Post, where she talked about the pain from Sarcoidosis that was so bad, only opioids would give her relief. In a world where we now often shudder at the mention of these addictive drugs, Stanfel wrote that they were her only path forward and that they serve a necessary purpose in certain situations -- including hers.

That is not to say it wasn't a struggle or that it was easy to wean herself from the medication. It wasn't. But in her writings, and during the discussion on the podcast she talks about how she fought to free herself from the drugs while still dealing with sarcoidosis.

Show notes:

Rebecca's post on Huffpost: https://www.huffpost.com/entry/oxycontin-fentanyl-opioid-crisis_n_63d1603de4b0c8e3fc7b72f6

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

MORE FROM JOHN

John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after.

Mon, 24 Apr 2023 05:00:00 -0500

Betsy Bennett is fighting Sarcoidosis. That might seem easy after breast cancer led to a double mastectomy. But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life. Listen in as she shares the story of how she thought she was disease free for just a brief time.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

Betsy on Youtube: www.youtube.com/@DrBetsyB

Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight Sarcoidosis

Mon, 10 Apr 2023 05:00:00 -0500

This podcast is a recording of the amazing town hall discussion looking at aTyr Pharma's drug that shows great promise as a replacement for prednisone for pulmonary sarcoidosis patients. In this discussion, we will hear from aTyr CEO Dr. Sanjay Shukla, FSR CEO Mary McGowan, Patient Jim Kuhn, and Dr. Shambhu Aryal - the Medical Director of the Inova Sarcoidosis Center. Together we look at the problems with the current therapies available to the sarcoidosis community, the frustration felt by both patients and physicians, and the promise of a drug called efzofitimod, which is now in Stage three clinical trials.

This is a compelling discussion where, once again, thanks to the team at the Foundation for Sarcoidosis Research, all the key players are available and more than willing to share their portion of the story and all it takes to move the needle on research.

Show notes:

Watch the Town Hall on You tube: https://youtu.be/mAXK1Ij8SgU

Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight.

Mon, 03 Apr 2023 05:00:00 -0500

April is Sarcoidosis Awareness month and FSR has many ways that the community can participate -- with your photos, videos and even holding up signs. It's all part of making the world aware that Sarcoidosis is a problem -- and remember the squeaky wheel gets the grease. Well it's time to squeak! Joining me on the FSR Sarc Fighter podcast this week are FSR Director of Development Angela O'Malley, Senior communications and Marketing Director Cathi Davis, and FSR Board Member and sarc patient Craig Lipset. Hear Craig's story about how sarcoidosis slowed his life as a young executive, and how he made his way to a leadership position with FSR -- and more importantly, how FSR is making it possible and even probable that more companies will try to find new drugs to fight the disease.

Show notes:

Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 83 | Tony Haskel thought his heart was healthy. Then came Sarcoidosis.

Mon, 27 Mar 2023 11:52:18 -0500

Tony Haskel is an active person. From his home in Connecticut, he makes time to ski in Vermont and ride his bike in the hilly regions around his home. But one day he found he couldn't go. His heart wasn't functioning properly because sarcoidosis had found its way into his body and started blocking vital communications within his heart itself. In this episode of the Sarc Fighter Podcast, Tony shares how sarcoidosis has attacked him and how he is fighting back.

Show notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Listen to the Kinevant Town Hall about clinical trials: https://beatsarc.podbean.com/e/bonus-episode-fsr-town-hall-uncovering-the-future-of-sarcoidosis-treatment-and-clinical-trials/

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes public

Mon, 13 Mar 2023 05:00:00 -0500

Sam Wassel is a young wife and mother. She is also a long distance runner. But the hardest thing she's encountered recently is the pain in her abdomen. At first she thought it was a severe issue with her monthly cycle. But upon further review, it was sarcoidosis. Listen as she details the pain she experienced and the difficult path to diagnosis. Also in this episode, Sarc Fighter Royce Robertson returns with details about his sarc fundraiser Cycle4Sarc. He's undertaking a major bike ride -- even though he suffers from cardiac sarcoidosis to raise money for the Foundation for Sarcoidosis Research. Listen in as he talks about his plans and fundraising efforts -- and - Do you want to join him?

Sam Wassel on the FSR Sarc Fighter Podcast

A screen grab from Royce Robertson's Fundraising Page

Show notes:

Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

Listen to the Kinevant Town Hall about clinical trials: https://beatsarc.podbean.com/e/bonus-episode-fsr-town-hall-uncovering-the-future-of-sarcoidosis-treatment-and-clinical-trials/

Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

Watch the Kinevant Town Hall about clinical trials on YouTube: https://youtu.be/RTP_46gvLPU

Participate in the Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Bonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical Trials

Mon, 06 Mar 2023 05:02:00 -0500

This is a special bonus episode of the FSR Sarc Fighter podcast. You will be listening to a town hall recorded on February 18, 2023, where the guests discuss how to get more people involved in clinical trials for medications pointed at treating sarcoidosis patients.

Guests include Mary McGowan CEO of the Foundation for Sarcoidosis Research, Dr. Divya Patel Director of Sarcoidosis and ILD programs at the University of Florida, Bill Gerhart, CEO of Kinevant Sciences inc., And Garrie Farrow FSR Patient Advocate and Women of Color committee member. FSR Sarc Fighter podcast host John Carlin served as moderator.

During the hour-long presentation, the need for clinical trials in order to advance the fight against sarcoidosis is clearly laid out -- as is the difficulty in recruiting patients for the program and the reasons many patients decline to participate.

All of this with the goal of making it easier for patients to say yes and for medical science to help make it easier for patients to participate.

Show notes

Watch the Town Hall on YouTube: https://youtu.be/RTP_46gvLPU

Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 81 | Wade Tomlinson tries to walk away from sarcoidosis.

Mon, 20 Feb 2023 05:00:00 -0500

Wade Tomlinson is a relatively young 49 years old - and he's already been suffering from sarcoidosis for nine years. Despite his reduced ability to breathe, he hits the trails every day, where he tried to log 15,000 steps. Sometimes even more. In Episode 81 he tells john how sarcoidosis crept up on him, somewhat disguised as allergies.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/

Wade's medicine OFEV: https://www.ofev.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me carlinagency@gmail.com

Episode 80 | John riffs on sarcoidosis clinical trial opportunities and ... Disney

Mon, 06 Feb 2023 05:00:00 -0500

In Episode 80 of the Sarc Fighter podcast, we take it too sarcoidosis in two ways -- by learning how to join an important clinical trial and by living the fullest life we can despite the challenges sarcoidosis presents.

Show Notes

Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email Royce Robertson roycelrobertson@gmail.com

Episode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike!

Mon, 23 Jan 2023 11:41:14 -0500

Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it all but impossible. In this episode he shares the details of his battle with sarc, and his plans to take it to the disease from the seat of his bike.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight Sarcoidosis

Mon, 16 Jan 2023 11:28:46 -0500

Royce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 78 | Dr. John Belperio at UCLA has done a deep dive into the state of Sarcoidosis.

Mon, 02 Jan 2023 05:00:00 -0500

Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medical Association, and now shares his findings here on the FSR Sarc Fighter podcast!

Show Notes

Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/

Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 77 | Covid Vaccines and Sarcoidosis: Surprising new research from the University of Illinois Chicago

Mon, 19 Dec 2022 05:00:00 -0500

Doctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all in sarc patients. Doctors Ascoli and Vagts went beyond a study of outcomes, and took a look deep inside the body to see what happens when sarc patients try to fight off the Covid-19 virus. In this episode of the Sarc Fighter Podcast, they describe in layman's terms how they were surprised by the outcome.

Show Notes:

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 76 | Leeanne West is a scientist who discovered Sarcoidosis in her own life.

Mon, 05 Dec 2022 05:00:00 -0500

Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it at bay as best she can.

Show Notes

Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/

Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 75 | FSR Leaders Dr. Louise Perkins and CEO Mary McGowan on all the current progress.

Mon, 21 Nov 2022 05:01:00 -0500

FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going.

Show Notes:

Kinevant Clinical Trial https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

FSR Snowflake Stories: https://www.stopsarcoidosis.org/snowflake-stories/

The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/

Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 74 | A Doctor and Two Sarc Fighters Urge Black Americans to Join Clinical Trials

Mon, 07 Nov 2022 05:01:00 -0500

In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people.

Why is that?

Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because of trust issues, and bias on behalf of medical professionals to recruit African Americans for trials.

Dr. Ogugua Obi of the Brody School of Medicine at East Carolina University in North Carolina.
Kathryn Washington, a sarcoidosis patient and member of the FSR ACTe Now Patient Advisory Committee
Calvin Harris, sarcoidosis patient and a member of the ACTe Now Patient Advisory Committee

Show Notes

The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/

Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg

More on aTyr Pharma: https://atyrpharma.com/

Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 73 | FSR is looking for a few good volunteers. Maybe you.

Mon, 24 Oct 2022 05:01:00 -0500

The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers, such as the Cleveland Clinic, are among the top care centers for Sarcoidosis in the United States.

FSR is looking for the right people to lead support groups and other patient-focused activities at each center. In this episode of the Sarc Fighter podcast, Mindy Buchanan of FSR and Rhonda Jenkins of the Cleveland Clinic join me to talk about the types of people they are searching for and how to get more information.

Show Notes

Kinevant Clinical Trial information: https://bit.ly/3DaVsR6

More about Kinevant: https://kinevant.com/about-us/

Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/

Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237

FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 72 | Sarc Fighter Regina Gordon shares her battle.

Wed, 19 Oct 2022 09:19:10 -0500

In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two college degrees. Listen in to hear how she is getting it done! And be sure to listen at the end when she shares a poem she wrote about the battle!

Above: One of my Elk photos! And of course, above that Regina and I talking on the podcast!

Regina's Facebook page: https://www.facebook.com/groups/422755127748559

aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 71 | Andrew Brandt is fighting back - for all of us.

Mon, 26 Sep 2022 05:01:00 -0500

Andrew Brandt has been suffering from sarcoidosis for more than five years. Lungs. Nervous system. Skin. And yet, he runs every day. And by that, I mean EVERY day. No matter how bad he feels. He will reveal his impressive streak during the interview. In the meantime, he is using programs offered by his company -- and his leadership skills, to raise serious money for the Foundation for Sarcoidosis Research. In this episode of the FSR Sarc Fighter podcast, Andrew tells his story, and we will also hear from FSR Development Director Angela Freelander, who will not only thank Andrew -- but explain why his gift is so important to the greater good.

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

Kinevant

www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 70 | Laura Ward thought she had cancer... but it was sarcoidosis.

Mon, 12 Sep 2022 12:39:54 -0500

Sarc Fighter Laura Ward has been fighting sarcoidosis for three years. Her first inclination that something was wrong happened at Yankee stadium, when she had trouble walking up to her seat. Initial tests showed she had lymphoma. But upon further review, it was pulmonary sarcoidosis. That led to issues with prednisone and other life challenges that she shares in Episode 70 of the FSR Sarc Fighter podcast.

Show Notes

#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/

Kinevant

www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 69 | Kinevant Sciences is researching namilumab – a potential new drug for sarcoidosis

Mon, 29 Aug 2022 07:54:05 -0500

Kinevant Sciences is researching a potential new drug for sarcoidosis - namilumab – which inhibits one of the key proteins believed responsible for granuloma formation and persistence in sarcoidosis.

In Episode 69 of the FSR Sarc Fighter Podcast, Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rodgers discuss the status of namilumab, and how you as a sarcoidosis patient can participate in the Phase 2 clinical trial, RESOLVE-Lung.

Show Notes

www.kinevant.com
www.sarcoidosistrial.com
Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554

Below is a transcript of the interview. It is auto-generated. Please excuse typos and misspellings.

John Carlin: Coming up on the Sarkfighter podcast, an exciting new potential treatment for Sarcoidosis.

Bill Gerhart: This particular protein is required for granuloma formation and persistence and that if we inhibit it, we can potentially make a significant difference in Sarkidosis.

John Carlin: The folks at Cotton are ah, researching a drug that is showing promise and shutting off the body's damaging response to the triggers of Sarcoidosis.

Bill Gerhart: So that's what I mean about a precision medicine and why we're so excited about the promise and potential of this particular drug for Sarcodosis.

John Carlin: That interview is coming up.

Bill Gerhart: This is the Sarkfighter Podcast, living with sarchoidosis and other rare diseases. Here's your host, John Carlin.

John Carlin: Hello and welcome to the Sarkfighter Podcast. I'm your host, John Carlin and this episode of the FSR. Sarcfighter podcast is brought to you by kind of antsciences sponsor of the Resolve long pulmonary sarcoidosis clinical trial. For more information, please visit www.sarcodosentrial.com. I do this podcast to offer my fellow shark fighters hope and to help you connect with other shark patients to hear their stories, understand how Sarcidosis affects their lives. Hopefully that helps you understand what you are up against and what you need to do to overcome whether it's the disease or the effects of the medicine or both. Before we jump into our interview today, I want to give you an opportunity to become a leader in the Sarcodosis community by sharing your story. A lot of people have done it here on the podcast, but FSR now is seeking dynamic, dedicated individuals impacted by Sarcodosis. To work alongside the newly launched FSR Global Sarcoidosis Clinic Alliance, volunteers would apply to become community outreach leaders. That's a new title. Who will share their Sarcodosis story with the public to empower others and raise awareness, or apply to be support group leaders, which would be a different category of leadership to facilitate inperson support group meetings at FSR Global Alliance Clinic alliance member locations. Applications are due September 30, which is coming up quickly, about a month from the day that I'm recording here in late August of 2022. Learn more by visiting the FSR website and there will be a link in the show notes, but it's www.stopsarcodosis.org gscaleaders. But another thing that we do here on the Sark Fighter podcast and these actually tend to be the most popular episodes, is talk to researchers and people in the pharmaceutical space about progress in fighting Sarcoidosis. Kind of spread that out, didn't I? Sarcoidosis, well, Sarcoidosis, you know what I mean. Today I have for you a solid dose of hope. The pharmaceutical company kind of Am is working on a drug called Namiliumab and if all goes well, you'll be hearing a lot about it in the coming months and hopefully longer. Now probably if it gets through all the trials and so forth, it'll change and it'll have a, uh, commercial name. And if all goes according to plan and this becomes a drug that's available to Sarcodosis patients and a lot has to happen before that could be the case. Namil You MAB will be known by something else. But in the meantime, let's just get kind of used to hearing that. It's N-A-M-M-I-L-U-M-A-B namel. Umab, okay. And I'll be talking with Bill Gerhardt. He is the CEO of kind of Aunt and also Rainy Rogers, she is the director of Patient Advocacy about how this drug, if it makes it through clinical trials and it's done well so far, can shut down sarcoidosis by switching off the trigger that creates the body's autoimmune response, which, instead of helping, actually damages tissues in our bodies. That's what we call fibrosis. And often that damage is irreparable. And of course, sarcidosis is the snowflake disease. It's different in every single person. Most of the time, like 90%. It happens in the lungs. Sometimes it happens in the heart. So you have cardiac sarcoidosis, and the last thing you want is permanent damage from fibrosis in your heart. But also, uh, in a very small number of cases, it can be in the, uh, neurological system. Like in my case, I have it on my spinal cord. It can be in your eyes. It could be in your spleen, it could be on your skin. We've talked about many, many of those cases here on the sarcfighter podcast. And no matter where it shows up, it's not good. So today we'll be talking primarily about sarcodosis in the lungs, also a little bit about cardiac sarcidosis, but how Amelia MAB looks to be promising in those cases. All right, now, as you know, sarcidosis is essentially granulomas. Noncaseating granulomas is the term that we hear and use that's basically small clumps of immune cells clustering in a part of your body where a signal has indicated that the body needs to defend against an invader of some kind. But there is no invader. There is no insult. But the granulomas come anyway. And instead of helping, they do damage. And if left unchecked, there are all kinds of issues that can happen. And that's basically the story with sarcoidosis. So today on the podcast, we'll be hearing how kind of ant is making steady progress so far with this new drug, Namilium App. All right, now, Bill Gerhardt is so good, the CEO, at breaking down how the drug works in layman's terms, in a way that you can understand. You'll hear him use an analogy where he talks about the tumbling of dominoes. And if you've never been able to figure out what's going on in your body when he starts talking about how the dominoes tumble, you'll start to really understand what's going on with sarcrodosis in your body and then how, uh, this new drug potentially could stop the dominoes from tumbling and by doing that in a very specific, highly targeted kind of way. Now, what I can tell you so far is that Namilia MAB has passed the phase one clinical trial. And the company is now recruiting people, including you, maybe for Phase Two. If that's successful, there will be Phase Three and then FDA approval. And we'll go over the timeline in the interview today. And as I mentioned a moment ago, you may have a role in this. There is a strong need for people to sign on for the trial, and Bill and Rainey will be sharing information about how you can do that. And I can tell you it is not just happening in the United States. So there will be opportunities for people all around the world to potentially participate in this. So maybe you're one of those people who are suffering the effects of prednisone, maybe long term exposure to prednisone, or you're dealing with methotrexate. And a lot of people's bodies don't react well to methotrexate. And, for instance, I know mine didn't, and you're tired of it. So maybe you're wondering where you would go to participate. How would you sign up for this? How would you just get more information about it? And all of that is coming up here on the FSR Stark Fighter Podcast.

Bill Gerhart: Uh.

Speaker C: M um.

John Carlin: Hi.

John Carlin: I hope you're enjoying the Stark fighter podcast.

John Carlin: You may be wondering, what can I do to help?

John Carlin: How can I be a part of the Sarquidosis solution?

John Carlin: It's simple.

John Carlin: Make a donation to Kicks, kick in to stop Sarcidosis.

John Carlin: 100% of the money goes to the.

John Carlin: Foundation for Sarcidosis Research.

John Carlin: Look for a link in the show.

John Carlin: Notes of the Sarfighter Podcast. A reminder from FSR. Over the past year, with generous support from the community, FSR has made incredible progress in efforts to accelerate Sarcodosis research and deliver responsive patient support. Programming spotlighting Sarcodosis to hashtag make it visible. FSR's 2022 update that provides an inside look at the incredible progress made in the last year, as well as upcoming initiatives in the Sarcoidosis world.

John Carlin: So if you want to know more.

John Carlin: About that, visit the FSR website and read the update and learn how your support can help stop Sarcoidosis.

John Carlin: Welcome back to the Sark Fighter Podcast. And joining me now is Bill Gerhardt. He is the CEO of kind of ant. And Randy Rogers. She is the Director of Patient Advocacy as well. Guys, thank you for joining me here on the podcast.

Bill Gerhart: It's great to be here, John.

John Carlin: Uh, yeah, we have a lot to talk about today and some exciting research which could have some fantastic results for people with Sarcoidosis. And Bill, I know you're going to be fielding a lot of these questions in the beginning, and then Rainy will get to you in a little bit when we start talking about the advocacy side of, uh, what you guys are doing at Kind of amp. But Bill, let me just throw it out there. You have a, uh, potential new treatment which is still in the research phase. But, uh, why don't you tell us what Namilia, uh, MAB is, please?

Bill Gerhart: Yeah, sure. Thanks, John. First, um, I'm, um, excited to be here on your podcast. I've been, uh, listening to you for a while now and feels like we're, uh, old friends. So it's a pleasure to be here and we're excited to talk about our drug candidate for, uh, sarcodosis and a clinical trial that we've initiated for pulmonary sarcodosis. Nameliumab is a next generation precision medicine. It's pronounced Nah milieu MAB. I know it's a mouthful, but after we say it 100 times, we get pretty good at it, right. Um, but eventually it will have a brand name. But that's a generic name for now. And to oversimplify, what nameliumab is it's? An antibody that inhibits a key cytokine, a type of protein that we believe contributes to the formation and persistence of granulomas. Antibody drugs are often referred to sometimes as biologics because it mimics M, a type of molecule that is found in our biology, in our body. Antibodies are normally produced by our body to fight diseases and infections. All of us have millions of them circulating within us. For example, most of us all now have antibodies that will attack the Cobid virus, either because we've been infected and or because we've been vaccinated. Antibody drugs are unfortunately expensive to manufacture, but they can be very powerful at precisely inhibiting the activity of a key target, a key protein involved in a disease. You know, uh, when a drug is a biologic, when it is administered either by infusion or injection influxamab or rimicate or Adolylmab or humera are examples of an antibody type drug that are biologic that some of your listeners may be familiar with. Another clue that the drug is an antibody is when the generic name ends in MAB, M-A-B like inflicts a MAB or Adolittle MAB, or in our case, Namilia MAB nameb inhibits a key protein that we think is involved in the formation and persistence of granulomans. Uh, the name of that particular protein is called granulocide macrophage colony stimulating factor, which is a mouthful. It's referred to as GMC SF, in short. But the important thing to know about this particular protein is that it's elevated in the blood, lung fluid and lung tissue of sarcoidosis patients. And the more severe the disease, the higher are, uh, the levels of this particular protein. More importantly, when GMCSF is genetically deleted in animal models, those animals are not able to form granulomas when challenged with a virus or bacterium. And when GMC s theft is overexpressed in animal models, the level of granulomas are significantly higher. So it's the combination of these samples from patients combined with these animal results that are a really good indicator that this particular protein is required for granuloma formation of persistence, and that if we inhibit it, we can potentially make a significant difference in sarcodosis.

John Carlin: Well, that is a lot of information, but, uh, it sounds it was a wonderful explanation, honestly, for what's going on in people's bodies. So you say you try to trigger the um reaction by what would you do? Like give them a ah, virus and see if you couldn't get that to trigger? And that's the evidence that suggests this is working.

Bill Gerhart: Yeah. Not to get too uh, scientific about it, but there are animal models that have been developed that form granulomas when challenged with a bacterium or a virus or a number of any other things that can result in the formation of granulomas. And so in these animal models to test a hypothesis you can actually genetically engineer the animals so that it doesn't express your protein of interest. And in the case where this particular protein that we're targeting Tmcsf, is missing those animals cannot form granulomas in response to that challenge. And more importantly, when we add higher levels of this protein to those animal studies when challenged, you see a significant increase in granuloma. So it's uh, not a guarantee, but it's a great sign that this approach could be effective for treating granuloma at its source. I mean sorry, treating sarcodosis at its source?

John Carlin: Well, it sounds extremely promising just on the face of it, as you've explained it.

Bill Gerhart: Well, we're certainly excited enough to invest uh, a very significant, uh, amount of money and uh, for the team to invest a significant um, percentage of their uh, adult working life to try to develop a new therapy for sarcodosis based on this uh early but uh, promising data that suggests that the drug will work once, uh, it gets into patients. I think maybe to better answer the question why do we think it will work? We need to briefly just traverse the ground that may be well understood by some of your listeners. We all, I think, know that sarcoidosis is an inflammatory disease characterized by the presence of granuloma believed to be formed by an exaggerated immune response to unidentified antigens. Granulomas are clumps of cells that surround an antigen. The purpose of granulomas is to wall off that antigen so that the body is protected from whatever that is. And what do we mean by an antigen? It's a foreign molecule or a molecule that the body thinks is foreign, like a virus or a bacterium, chemicals or maybe dust even or maybe even a protein in the body. Like a fragment of DNA that the body doesn't recognize. And normally the body can clear these granulomas without assistance. But in sarcodosis, those granulomas persist, sometimes leading to inflammation that when unsuccessful at clearing the granulomas, persist. Uh, and it's that chronic inflammation that mostly leads to the symptoms. Patients experience compromised organ function and in some cases scarring or fibrosis of the tissue which can lead to even organ failure. And as you know, and as uh, most of your listeners know, nobody knows for sure why some people get this disease. It's likely due to some genetic predisposition where the immune system doesn't quite work right when a foreign molecule is detected similar to why some people get cancer when exposed to certain environmental exposures. Why is this important to understand for this particular drug? Uh, well, short of understanding what genes are causing the initial dysfunctional immune response and because scientists don't historically know what is actually causing these granulomas to form the best pharmaceutical approaches to treating this disease historically have been broadly acting anti inflammatory or immune suppressive therapies like pregnancy or method. But what we're doing is taking a more precise approach, a, uh, more targeted approach to the specific thing that's happening in sarcodosis based on a better understanding of what's going on. All biological processes have what are called pathways. When one thing happens, a cascade of biological events occur leading to, in this case, an inappropriate immune response to an antigen that fails to resolve on its own. Think of a biological process as a row of dominoes that fall over one after another after the first one is knocked over eventually leading to the last domino falling over. As we better understand what those pathways look like for sarcodosis we can develop new drugs that target a specific step in that pathway, a specific protein in that pathway or, if you like, a specific domino. In my example, that when inhibited, stops the process from occurring stops the formation and persistence of granulomas and or better enables the body's immune system to get rid of the granulomas. If we can prevent or reduce the formation and persistence of granulomas we can prevent or reduce the resulting chronic inflammation that leads to all of the problems that patients are experiencing. And if we can do that with a drug that is safe, well tolerated and conveniently administered then that would be a home run for, uh, patients with this disease. Think of it as a precision medicine. We're not developing a drug with broad anti inflammatory properties like prednisone, which works in the short term. It causes all kinds of problems if patients are unable to taper off after one or two courses. And we're not talking about a drug like methotrexate, which broadly suppresses the immune system, which sometimes works, but it's slow to act and has significant side effects for a lot of people that take it. In my Domino's example, these types of medicines don't knock over just one domino in one pathway. They knock over multiple dominoes and multiple pathways a sledgehammer, if you will, instead of, um, a scalpel leaving not only some, um, efficacy in circuit doses, but sometimes also to a lot of other unintended effects, side effects. So that's what I mean about a precision medicine and why we're so excited about the promise and potential of this particular drug for sarcoidosis.

John Carlin: And why sarcoidosis? We've got about 200,000 sarcoidosis patients in the United States and over a million that we know of in the world. Convenient, uh, is focusing on an orphan disease. Can you kind of give us some idea of why you decided to work on circuitosis.

Bill Gerhart: Yeah, that's a great question. Maybe to answer that question, I can tell you first a little bit about myself and then a little bit about the philosophy and the focus of our company. Um, my background is primarily as the CEO and founder of, uh, bio pharma companies, mostly here in San Diego where I live. So I'm somewhat of a serial entrepreneur, having started a half a dozen companies in my career. By the way, biopharmic can mean different things to different people, but in my case, it means drug development. In other words, designing and executing clinical trials in order to prove that a drug is safe and effective and deserves to be FDA approved and made available to patients. I started a company and helped develop a new medicine for cystic fibrosis, which is a rare disease I helped start, uh, and was the CEO of a company that developed a new medicine for chronic obstructive pulmonary disease, which is the number three cause of mortality in the world. And I was the CEO and founder of a company that was developing a drug for idiopathic pulmonary fibrosis, which is a deadly respiratory disease. But in that case, um, that program failed, which sometimes happens in our industry. Uh, we were in the middle of recruiting for that study when the pandemic hit, and we had to stop recruitment, like a lot of companies. And we tried to finish with the data that we had, and unfortunately, the data wasn't positive enough for us to continue forward. So that's kind of a little bit about my history. And at this point in my career, I'm passionate about working on new treatments for diseases that have few or no good treatment options. Serious diseases with significant unmet needs. And those tend to be rare diseases, which is arbitrarily defined as less than 200,000 in the US. And they frequently have no therapies approved. And I've been looking at Sarcodosis for maybe close to 15 years, but just never found the right approach, um, that I thought would be, um, uh, successful. Um, and the conviction rate has to be pretty high, given what's at stake when you actually go down this path to develop a new drug. So, kind of Ant was formed to specifically focus on inflammation and autoimmune rare diseases. And our first and currently only program is targeting Sarcodosis. Unlike a lot of other developers who start with a drug and look for a disease to treat, our philosophy is to first start with the problem, the disease, and work backwards to identify and eventually develop a drug that we think will most effectively treat that problem. So when you ask the question, Why Sarcoidosis? It's because of all of the different rare diseases that we've been looking at. We think we've got an approach that we have a lot of confidence in, that we think it's going to work. And once you have that conviction, then there's obviously a moral, um, obligation and a business obligation to go try to make that happen. Influenb remicade or adolyma. Pimera are examples of drugs that have been developed for other diseases and they have sort of been repurposed for treating sarcodosis, but they weren't designed or developed to treat specifically sarcoidosis. Not specifically proven effective and approved by the FDA for sarcodosis, but better than no option for sure, other than antiinflammatory or immunosuppressant drugs like Pride Zone or Methotrexate. The advantage of our approach is that we believe it significantly increases our probability of success, the success of the therapy, both in terms of efficacy and in terms of tolerability and safety. A lot about sarcodosis, not well understood. That's just one of the many things that makes it challenging to develop a new therapy for this disease. However, our, uh, growing knowledge and what biological processes cause the disease, and based on our insights on how we can interrupt those processes that lead to this disease with a new therapy, gives us, um, a lot of hope and a lot of excitement about the potential to treat this disease at its source more effectively than what's currently available. So that's our approach generally, and that's our approach specifically for sarcodosis.

John Carlin: Well, um, just speaking on behalf of the sarcodosis community, thank you for choosing sarcodosis to focus on. Um, as you mentioned, there are no on label drugs right now for sarcodosis that are specifically developed for sarcoidosis. So, um, as we look at your research opportunity here, uh, let's hope that it moves forward in a positive direction the way that it seems to be with what you've been able to establish so far. So thank you for that. Um, let me ask you the next question. So you have started now, uh, as we talk about your research, you, um, have started something called the Resolve lung study. Please tell us what that is.

Bill Gerhart: Uh, sure, yeah, no excited to talk about our clinical trial and in fact, we actually have initiated two clinical trials, John. We've initiated a smaller study and cardiac sarcidosis that we refer to as resolve heart, and a larger trial in pulmonary sarcastosis, which we refer to as resolve lung, which we'll mostly discuss here today. And the resolve lung clinical trial is a traditional randomized doubleblind placebocontrolled trial, that is a phase two trial, which is many of our listeners know as a result of listening to other speakers on your podcast, is sort of the middle of the process, if you will, to a drug being approved by the FDA. Phase one is mostly safety. Phase two is efficacy and safety in a smaller number of patients. Phase three is safety and efficacy in a larger number of patients. In our particular case, we've actually designed a pretty significant phase two study. It's a twoarm study. One arm would have, ah, randomized to placebo. The second arm would be randomized to our drug mailing map. It's 100 patients total 50 patients in each arm. Um, and for patients, it would be a one year commitment with monthly clinical visits. And the one year is broken into two periods. The first six months is the randomized, double blind, placebo controlled part of the trial. But at the end of the six months, all patients in the trial will roll over and be in what we call an open label extension. Which means regardless if you were on placebo or active in the first six months of the study, you will be on the therapy in the second six months of the study. So everybody in the clinical trial will eventually get the drug, either in the beginning or in the middle of the trial. The trial, like other pulmonary sarcodosis studies, is designed to measure improvements in lung function and in quality of life, ability to taper off of steroids or other immunosuppressive, therapies changes and improvements in fatigue and other important assessments of effectiveness for patients. Um, patients eligible for the study are broadly patients that are not well controlled on currently available therapies, either because they're on doses of prednisone and methotrexate and they still have symptoms and they're still sick and they still have a poor quality of life, or they've tried to use levels of those drugs that are effective but aren't able to tolerate the side effects. So we hopefully are targeting patients who are of the highest need, who would normally be patients that would be candidates for biologic, um, in order to best demonstrate the potential of the drug. It's a big study, uh, in terms of footprint up to 50 clinical trial sites in seven different countries in the US. As well as the UK and the EU.

John Carlin: So you right now, are in phase two. Are you actively recruiting, you're looking for those patients right now?

Bill Gerhart: We are. We've, uh, just recently opened our first clinical trial sites in the US. And we're starting to screen patients for both studies. And we hope to actually enroll our first patient here in the very near future. Or maybe by the time your listeners, uh, hear this podcast, we will have enrolled our first patient, which would be a huge, exciting moment, uh, for the company, because to get to this point took years, uh, and a significant amount of work by a lot of people at our company in order to get to that point. It's not the end, obviously, because we have to then finish recruitment and, uh, lay the groundwork for the next part of the clinical programs. Everybody will be working forward, but it will definitely be a cause of celebration around our company.

John Carlin: So I want to ask you in just a moment where, um, these, uh, centers are that are offering the trial, because I assume there's some sort of geographic tie for people who may want to, but you can only travel just so far, go to the doctor often enough to make this work. Um, but I just want to get a time marker in here. You're listening to the Sark Fighter podcast, and we are talking with Bill Gerhardt, who is the CEO of kind of Ant, and we'll be hearing from Randy Rogers, the director of Patient Advocacy, here in just a moment. But we are recording, uh, in late August of 2020, uh, two. And just so if you are listening, because a lot of people do go back and listen to episodes in the future, uh, I want to make sure that if you're hearing this and you might be interested, that you kind of have a time marker. So that's what I'm doing. Um, so, Bill, let me get back to ask you, first of all, where, uh, is the research taking place and how long will you be recruiting patients for the study?

Bill Gerhart: Yeah, that's a good question. Um, I'll let Rainy give more information about how patients can find a clinical trial center in the area that they live, um, because we are opening up 20 to 25 sites in the US. It's a little bit of a long list to read off here, but our goal was to have a clinical trial site in every major city so that the majority of patients would have access, uh, to the, uh, drug. And of course, if they need to travel, we will provide, in many cases, assistance so that motivated and interested patients, uh, who potentially qualify the trial can participate.

John Carlin: All right. Uh, because it does disrupt people's lives, uh, to have to go back to the doctor that often, uh, especially if they don't feel that they need to. But on the other hand, uh, the therapy that you are investigating here sounds so promising that I would hope people listening to this, if they qualify, uh, would certainly try to step up. And the other thing that you mentioned, which is different than anything we've talked about on the podcast before, is so you have a placebo where somebody gets essentially a pill that looks like the treatment, and then you have another group that gets the actual treatment. But after six months, I heard you say everybody gets the treatment, which is an interesting take, I know.

Bill Gerhart: Uh, it's included in the study design for two reasons. The first is that it gives us more information about the drug when we can look, for example, at those patients that have been on the therapy for a total of twelve months. And just as importantly, it gives us important information about the drug when we follow patients who have been on placebo for six months, and then they switch over to the, uh, draw for the second six months, and we can see within one patient the difference in outcomes. And that is really valuable information. So that's one reason why we do it. And obviously, the second reason why we do it is because oftentimes patients are reluctant to participate in clinical. Trials because they don't want to take the risk of being in the placebo arm. And unfortunately, and you know this well from other speakers that you've had on the podcast in order to definitively determine if the dropd is safe and effective you have to compare it against a cohort of patients that are identical to the ones that have the drug who are on placebo so that you can make those comparisons. If you can't do that, then scientifically you really can't conclude if the drug is safe and effective. So that's a necessary part of drug development. But by adding this open label extension, we can say to patients if you participate in the study, you take the time and the inconvenience of participating in the study, then this is another reason to participate. And we've really worked hard to try to make it as easy as possible for patients to participate in this clinical trial. First, by opening up as many clinical trial sites as we can to make sure that, uh, the, uh, a center is, uh, nearby a patient who's interested and qualified. Second, we design, uh, the criteria, unlike other studies so that you don't have to be on a high dose of steroids to get in the study. If you are on a high dose of steroid and you want to try to get off, then you can participate in the study. And part of the study design will be to taper you down in, uh, the study. But if you're not on a high dose of steroid, you can still get in the study because we would just keep you at whatever level that you're at now. So you cannot be on a steroid at all and still get into the study. And we think that's a big advantage for a lot of people who traditionally have been excluded from clinical trials. Treatment practices are changing, and people are on high doses of steroids less and less as time goes by. And clinicians and patients are more aggressive about trying to find other options other than staying on high doses because of all of the side effects. So we think that that will be appealing. And then the other thing, uh, that's important to know about this drug is that it's not the first time that it's being evaluated in patients who have a significant disease. This drug has been in more than 300 patients, uh, sometimes up to six months or longer. And so far, we have not seen any safety or even side effects associated with the drug. So we can't be positive in what will happen in sarcosis. But, um, our belief is that the drug will continue to be safe and well tolerated. So oftentimes you hear patients say that they don't want to be a guinea pig and that's the reason for not participating in a clinical trial. But in this case, that shouldn't, uh, be a concern. And patients who, uh, are willing to participate in this trial can participate, uh, with that extra level of confidence and awareness. And then finally, the other thing that makes this drug different than other drugs that have been evaluated for Sarcoidosis, it's a sub queue injection. It's not an infusion. It's not a 1 hour fusion. You don't have to go to a clinic and sit in a chair for an hour. It's a convenient once a month injection that you can get at the clinic or in some centers that are participating in this clinical trial. A mobile nurse come to your home in order to do the assessments and to give you the injection. So we've tried to make it, um, as convenient as possible for patients who are interested in participating in this study to do so.

John Carlin: Very good. Um, I want to just ask you, so you're recruiting now. When do you think and it's a year long process, so when do you think you'll have the results of your phase two and be ready to go into a larger testing in phase three, and assuming that everything progresses as you hope, as we all hope, when, uh, might this be available to patients if everything just tracks according to plan?

Bill Gerhart: Yeah, good question. And I like your caveat at the end, because, um, um, um, often plans don't go as well as you hope, but in this case, our plan is to finish recruitment sometime in the first half of next year, which means that we will get our top line results in the first half of 2024. And in anticipation of positive results from one or both of the clinical trials that we're conducting in Sarcidosis, we are already investing in manufacturing for the phase three part of the program. One of the unique artifacts about developing, uh, particularly a biologic for a disease, is that you have to manufacture your phase three drug product in the same facility on the same conditions as what you would launch and go to market with. Um, if you don't do that, then you take on a lot of unnecessary risk and you potentially delay the drug's approval, uh, and entry into the market. So companies like ours not only are making a significant investment in the clinical trial, but we're making a significant investment in parallel with all of the manufacturing and, um, other requirements to initiate a phase three study so that we can roll into that phase three study in a very short period of time after we get our results from this study.

John Carlin: Excellent. You're listening to the FSR Sark Fighter podcast. And today we are talking with some folks at kind of a who are working on a potential new therapy, let's call it a research opportunity for Sarcoidosis. And I want to bring in Rainy Rogers, who is the director of patient advocacy.

Bill Gerhart: First.

John Carlin: Uh of all rainy welcome. Uh, you've been sitting here graciously, and we haven't heard from you much yet. So, uh, officially, welcome to the podcast.

Rayne Rodgers: Thanks so much, John. Um, the first time I met you, I felt like I was meeting a celebrity. I've listened to so much of, uh, your podcast over the last eight or nine months. So thank you so much for having us. Bill and I are thrilled to be here.

John Carlin: Sure. Uh, I'll tell you what, I'll bring it right up to San Diego as soon as the weather gets cold here in Virginia. How's that sound?

Bill Gerhart: You got a place to stay?

John Carlin: Beautiful. Um, but Randy, I, uh, know that you guys are working with FSR. Can you talk a little bit about that relationship?

Rayne Rodgers: Absolutely. So, um, I'm the Director of Patient Advocacy at Canada, as John mentioned, and really, I wear a number of hats. So my background is in rare disease research, both for pharmaceutical companies as well as for patient foundations like FSR. Um, I actually worked for the Muscular Dystrophy Association and really, uh, here at Kanye, and I'm responsible for a number of different things. So helping to design clinical trials that are easy for people to participate in, making sure that all geographical areas are accommodated for and represented in research, and ensuring ultimately that the patient voice is reflected in everything that we do. So I spend a lot of time listening and a lot of time doing research, um, in partnership, uh, with groups like FSR. So kind of antiserid to be partnering with FSR, as well as a number of, uh, other smaller organizations that are, uh, international as well, that focus in Sarcudosis. We are partnered with FSR on a number of exciting initiatives. So I'll just highlight a few. Uh. So I joke with Bill. I could talk about advocacy all day. But I'll just give some highlights and some color into what we're doing with FSR m ultimately. We feel so lucky as researchers to have FSR as a partner for us to be able to really truly understand what's important to patients and to bounce ideas off of each other as we continue with our phase two research of Namibia Map. So we are part of the Corporate Advisory committee with FSR. We also recently, just last month, many of your listeners may have attended the Global Virtual Patient Summit. We were, um, really excited to represent, uh, our research there. We had a virtual booth. We, uh, had a live chat feature and interacted with people living with Sarcoidosis all over the globe. Had a lot of really great conversations. Uh, there. We had on our booth information about the trial as well. Um, another piece I want to highlight is we're a proud sponsor of the African American Women in Sarcodosis campaign. And that campaign really, uh, is pursuing how to best encourage African American women to participate in research, understanding the barriers to that population, and, uh, making rapid change to enable those populations to have access to these types of opportunities, especially for these ethnic groups that are historically underrepresented in research. Participating in clinical trials is so important because it really helps to ensure that the trial results better reflect both the effectiveness and safety of the drug, but across all patients or all people living with Sarquidosis. So, just a few highlights with FSR, but I'm thrilled to be partnered with them.

John Carlin: Yeah, well, of course. And you just mentioned the African American Women Initiative, uh, which, if people are listening to this podcast for the first time, may not be familiar with that program, but essentially you have a population, uh, when we look at the data that is most, uh, likely to suffer the effects of Sarcodosis and least likely to access effective treatment. And so that's one of the reasons why FSR is trying to, uh, make it easier for that group of people to get the treatment they need and to really kind of focus attention on a group that badly needs it. And so kind of ant is stepping in. And you're one of the sponsors of that program, so congratulations to you on that. I think that's outstanding advocacy. But when we look at, uh, Namib, if people want to get involved with this, and I know that there is a website that is probably available, um, through your website, but that information is also being distributed by FSR, is it not?

Rayne Rodgers: It is, yes. We have developed so we do have our kind of a website, but we've developed a study specific website that is for patients. It's for people that are living with Sarkoidosis who are looking for information about the drug, about the trial, um, you know, where these trial sites are and the ability to ask more questions. So that website, uh, and hopefully we can link it in the show notes. John, if they've seen you do that website is www.starkoidosistrial.com. So super easy to remember. Um, all the information is there. Also, Bill had mentioned study sites, that we have 26 sites in the United States. Um, and we have a total of, uh, approximately 50 sites globally. So we have seven countries, including the United States, that are participating. Um, some of the sites are active. Now, as Bill had mentioned, we're thrilled to have sites actively enrolling, and some of our sites are still in startup.

John Carlin: I know you're actively working with all of these sites right now. Uh, and again, we are speaking in late August of 2022. So if someone is listening to this, when do you think that that will be firmed up completely and that you'll have all your sites lined up and ready to go and to accept patients that might be willing to do this?

Rayne Rodgers: Yeah, absolutely. So it's on a rolling basis. Um, every week we have new sites activating. We're hoping to get all of our sites active here in the next couple of months, uh, specifically in the US. Probably sooner. Um, that link Sarquidosischrial.com, it's going to be updated in real time, so as soon as a new site is active, that site is going to be listed there.

John Carlin: I just want to touch back quickly because Bill, earlier in the podcast is mentioned, there's actually two studies happening here. There's. Resolve heart and resolve lung. As we look at the potential safety and effectiveness of Amelia Map, um, are we talking primarily about lung patients here, or if you heard the word heart and you're a cardiac patient, how would you react to the information we're sharing right now?

Rayne Rodgers: You're right. What we've been talking about with the 50 sites and, uh, international and all that, that is specific to the Resolve Lung Study. The, uh, Resolve Heart Study is in the United States, and we do have information on, uh, our website for that study as well, in terms of how to find more information.

John Carlin: All right, and what level of sarcidosis are you looking for? Are you looking for a patient who's just been diagnosed or for somebody who's been suffering for multiple years or all of the above?

Rayne Rodgers: Sure. Um, so there's a short list of criteria on the website. I'll highlight just a couple of points. Um, so, 18 years or older, diagnosed with sarcoidosis for at least six months, completed a COVID-19 vaccination. I think the fourth one listed there is, um, just around steroid use. And, um, Bill had mentioned this earlier, but willing, uh, to either taper down or stay on a stable dose or no requirement for steroids as well. So, yeah, those criteria. A couple of things there are listed on the website.

John Carlin: All right, outstanding. Um, so, Rainy, is there anything else that you wanted to add in terms of patient advocacy and making kind of ant, uh, making sure that the psychedosis patients are being heard, or anything else you want to add along those lines?

Rayne Rodgers: Absolutely. Uh, just a couple closing statements for me. I mean, ultimately, I just want to really stress how much time our team has spent really considering and trying to understand what's important, not to rare disease patients, but to people living with sarquidosis, um, and what it would take for them to, uh, consider partnering with a company like kind of Ant for research, uh, with Mammalia Map in both pulmonary and cardiac sarcidosis. We've tried to think outside the box to make the trial more accessible. So some of the things Bill had mentioned, we have, um, transportation assistance and, uh, travel reimbursement to study visits. We know that these visits can be, uh, time consuming and potentially financially burdensome. Um, so really trying to, um, cover those costs there ultimately the fact that Namiliamab is an injection and not an infusion, which will reduce, uh, the time needed to participate in a research project such as ours, and the offering of home and televisits. So if a patient is working, um, they need an evening home visit for their objection. This month, they're traveling, they're taking care of a loved one there's so many things that happen on a day to day basis. Really trying to make sure that we're addressing those potential concerns and offering, um, the flexibility and the, uh, resources there so that all patients that are interested have an opportunity to participate. Not just, uh, someone who's living in a close to a big city and potentially retired. And, um, we understand that the Sarquodosis community is very complex and that there's a lot of different, um, things that are important. So really trying to cover all those basis.

John Carlin: Well, the fact that it's a shot is fantastic. I've been through the whole thing at the infusion center with Remicade, and it is very time consuming. You have to build your life around it. There's no other way around it. Um, and now, uh, I've transferred to, um, Humera, and that's a shot that I give myself at home, which is so much easier. And in terms of participating in this study, uh, that's just something that it's that hour of your life that you get back once you get there and go through the waiting room and all the other stuff that happens when you're at the doctor's office. Well, Randy, uh, thank you. And I, uh, want to bring in CEO Bill Your Heart again, uh, at kind of a bill. Do you have some closing thoughts or anything else that you would want to add to our conversation?

Bill Gerhart: Drug development is hard. Most people in the world have a negative impression of pharmaceutical companies, usually because of the high prices charge for drugs, which makes them less accessible to many. I understand that. But the reality is that most drugs are initially discovered and developed by small companies like ours, staffed with people who take huge career risks and investors who risk significant amounts of money to work on just one program or one disease. It takes a hurricane, uh, effort and a lot of courage to nurture a drug candidacy from infancy to improve an entity that's available to patients. Most, as you know, fail along the way. Many of us have nothing to show for the effort after dedicating three to four Five years Longer of Our Livesto program. And a good example was the program that I worked on at IPF, which was five years of our lives and $100 million of invested capital with nothing to show for it. At kind of end, I'm, um, privileged to lead a small team of very dedicated individuals who wake up every morning thinking about nothing but the huge responsibility we have to successfully conduct these clinical trials and develop a new therapy for those with sarcosis, many of whom desperately need a more effective and well tolerated therapy to treat their disease. For us, it's now a mission and a cause that consumes 80% of our waking minutes. We are completely energized by the potential to make a significant difference in the lives of patients that are suffering from Psychnosis. Having spoken to many of them over the last couple of years. We deeply understand the challenges experienced by people with this disease. It's challenging to diagnose, challenging to find the optimal treatment regimen. It has a significant impact on quality of life, and the existing treatment options can be pretty crummy. So here's my call of action here's my call to action from your listeners. Nobody is pleased with the currently available therapies for sarcodosis. But in order to develop new therapies that make a significant difference in this disease, it does take a village. It takes dedicated biopharma or pharmaceutical companies that are willing and able to make the investment in r amp D for an orphan disease for a small number of patients, relatively speaking. But more than this, it takes clinicians who treat this disease to be willing and enthusiastic about participating in clinical research. If they're not willing and enthusiastic about participating in clinical research, we can't evaluate and get new therapies to patients. And patients have to be willing to participate in clinical trials. If you don't have clinicians and patients willing to participate in clinical trials, we can't invest in developing and evaluating new candidates for this disease. I mentioned earlier that biologic drugs are expensive to manufacture. But the biggest drive of cost, the biggest driver of cost, and thus the biggest driver of high prices for drugs for rare disease, is a huge cost to conduct a clinical trial like the one we have initiated for sarcidosis. And statistically, less than 5% of those with the disease are willing to participate in a clinical trial. If it's a large disease, that's not a problem, but if it's a rare disease, that's a big problem. It's been estimated that only 1% of sarcodosis patients who would qualify for a clinical trial would choose to participate in a clinical trial. 1%. It's risky to try to develop a drug for sarcodosis because we don't know what really causes the disease and we don't really know what's required to get the drug approved by the FDA. But on top of those risks, there's that significant cost to recruit and enroll a clinical trial, because it's so hard to find patients that are willing and interested to participate. If the percentage of patients just doubled from 1% to 2%, that would make a huge difference. The more patients who participate in clinical trials, the lower the cost to conduct clinical research for psychedosis, and the more motivated companies would be willing to develop new therapies for this disease. Forget about our company and our disease. I want to just make that pitch for the community of people who have this disease. It's important for people to have that awareness and to know that their participation is important in order for the treatments, for their disease to be developed and for their lives to improve, not just for them, but for successive generations of people that might have this disease. Other pharma companies are watching to see what our experience is and the experience of other companies conducting clinical research in Sarcodosis, can we successfully conduct a large study in sarcidosis? So this is a call to action. If you are clinician who treats Sarcidosis patients, sponsor a clinical trial so that your patients who are interested in qualified can participate. If you're a patient, please ask your clinician about the opportunity to participate in a clinical trial. Yes, it does involve some risk and some, um, inconvenience, but companies like ours need you to partner with us to conduct clinical research in order to develop new therapies that better treat and may eventually cure the disease that affects you and future generations of people with this disease. Without your participation, we can't do it. Help us help you.

John Carlin: Outstanding. That's a fantastic call to action. And, uh, I had never heard these statistics before. The 5%, generally 1% of Sark patients, and you start doing the math, and that doesn't leave you with many patients, potentially, when you look at the United States. Fortunately, the podcast does have a worldwide reach. So hopefully, if somebody's listening in Australia or UK or, um, wherever in Europe, uh, maybe that will help you get this done that much more quickly. So, uh, let's hope that that works out. So, we have been talking with, uh, two folks from kind event CEO bill gerhardt and randy rogers, who is the director of patient advocacy. Guys, thank you so much for what you're doing and for joining me here on the FSR Stark Fighter podcast.

Bill Gerhart: Thanks for the opportunity to share a bit about our company and, uh, the potential for this trial. John, we really appreciate it and thanks for all that you do for the community. It's really inspiring.

Speaker C: Um.

John Carlin: We covered a lot of ground in this interview, but there are some takeaways as you listen to the FSR SARC Fighter podcast. Let me hit the bullet points for you. Kind of Ant is the pharma company. They have a potential new drug to fight Sarcodosis called Namiliumab. It's passed phase one testing. Now entering phase two. It's shown so far that it is safe and has few side effects in 300 patients. And the hope is that further testing will prove that it will suppress the inflammation associated with Sarcoidosis and therefore significantly improve patients quality of life. They are working with various centers right now to get the ball rolling. They need you to participate. And this test is interesting in that eventually, even people who get the placebo initially will eventually receive the treatment from, uh, Namib. I'm working very hard to make that just roll off my tongue. I'm getting better at it. Namilumab. Okay. FSR is partnering with Kind of Ant to help spread the word about the trial. And you can get more information in the Show Notes on Kind of Ant's website and the FSR website.

John Carlin: And, uh, as I said, as well.

John Carlin: As the Show Notes here. Now I can tell you that it costs hundreds of millions of dollars to bring a drug like this through research and testing and then to the market. And let me just say that I, for one, m am glad that those resources, and let's face it, that risk, that financial risk, is being focused on Sarcoidosis, which is classified as a rare disease with fewer than 2000 patients in the United States. There are many, many of these orphan diseases. And it is gratifying that people like Bill Gerhardt and Rainey uh, uh, at kind of ant have decided that Sarcoidosis is where they want to put their focus. And then they're making progress, right? They're making progress. So thank you to Bill and Rainy for joining me here today on the FSR Sark Fighter Podcast. Reminder, uh, the official Sark Fighter song is called Zombie by Mark Styer, and he plays in a band called the White Hot Lizards in Alberta, Canada. Mark is a fellow SARC fighter. The story behind the lyrics is way back in episode twelve, but whenever you hear little bits of that song here on the podcast, you're hearing part of the song Zombie Reduce. Uh, I normally release a podcast every other Monday. As I'm speaking today, my trusty dog Google, my rescue boxer, is curled up on the chair in my office. Google makes my life so much better and I just have to share that with you. Please don't forget to follow me on social media. I'm on Facebook. Just search for Sarkfighter. Also Instagram if you happen to ride Peloton, you hear me talk a lot about Bicycling. I'm on Peloton as Sark Fighter and I do have a cycling blog, Carl and the Cyclist, which has a section called Cycling with Sarcoidosis. Also, if you are new here and you're just trying to figure out what Sarcoidosis is, try listening to episode one. But, uh, actually episode two with Dr. Simon Hart. It is one of the most listened to episodes. My story is episode one. And the backstory to the founding of the foundation for Sarcodosis Research is episode eleven with Andrea and Reading Wilson who started the foundation at their kitchen table. If you would like to tell me something about the podcast, if maybe you'd like to be a guest on the podcast, if you want to, uh, alert me or, uh, let me know about something that's happening, please email me. Carlinagency@gmail.com, uh, that link is in the Show Notes. And if you just want to comment on the podcast, I certainly welcome your comments. So once again, follow me on social media. Please take a link and just help share the podcast, get it out there in the Sarcodosis community using your social media, because I do appreciate your interest. And the more people who listen, the more we can grow this community and the more it can help. So, if nothing else, if you really like the podcast, just tell one person. I certainly appreciate it. Until next time. Keep fighting.

Episode 68 | Profound thoughts from a dying man.

Mon, 15 Aug 2022 07:32:36 -0500

A retired businessman had everything, until doctors told him he had only weeks to live. It was cancer, not Sarcoidosis. But this man began posting profound thoughts on a forum. I have met him and talked about his success in business. I have an amazing amount of respect for what he's accomplished personally as well as professionally. So when I read his posts I saw pearls of wisdom that apply to those of us fighting sarcoidosis. I wanted to share some of those thoughts today on the podcast.

Show Notes

Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 67 | Kristi Hedge begins her sarcoidosis journey.

Mon, 01 Aug 2022 11:00:24 -0500

Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis. Listen in as she details how she started feeling poorly. After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs.

Show Notes

All about the Summit: https://www.stopsarcoidosis.org/summit-2022/

Contact Mindy: mindy@stopsarcoidosis.org

How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/

Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 66 | Unveiling Possibilities - All about the upcoming Sarcoidosis Summit from the Foundation for Sarcoidosis Research

Mon, 18 Jul 2022 05:00:00 -0500

Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness. It's also a time to learn more about the latest research and to just be with others who get it. The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research.

In this episode of the Sarc Fighter Podcast, the FSR Director of Patient Programs, Mindy Buchanan joins me to talk about the highlights of the summit, how you can sign up and how to participate at no cost if you are unable to pay the fee. Mindy is truly excited about all the summit has to offer, and she will share that enthusiasm during the podcast.

Show Notes

All about the Summit: https://www.stopsarcoidosis.org/summit-2022/

Contact Mindy: mindy@stopsarcoidosis.org

How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/

Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

The New FSR Initiative

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 65 | aTyr Pharma is getting closer to a potential breakthrough in treating Sarcoidosis

Mon, 11 Jul 2022 05:00:00 -0500

aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients. In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life. In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of testing and analysis before Efofitimod reaches FDA approval, and would then be available to treat sarcoidosis patients.

Will this be the first significant breakthrough in 20 years? Listen in as Dr. Shulka walks us through the successes so far and what must still happen for Efzofitimod to become available for patients.

Show Notes

How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/

Want to learn more about the clinical trial for efzofitimod? https://bit.ly/3EUOxNq

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

The New FSR Initiative

The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/

The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/

Episode 64 | The Leadership Team at the Foundation for Sarcoidosis Research with an exciting announcement!

Mon, 27 Jun 2022 05:00:00 -0500

In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis.

Show notes

The New FSR Initiative

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/

The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714

Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

Merlin: https://merlin.allaboutbirds.org/

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

The following is an Internet generated transcript of the interview. Please excuse spelling and grammatical errors.

John Carlin: welcome back to the Sarc Fighter podcast. I am so pleased today to have the people that make FSR absolutely run and operate here as guests today to talk about this new initiative. Our CEO, uh, Mary McGowan and Chief Strategy Officer Tricia Chivas are both here. Welcome to the podcast.

Mary McGowan: Thank you, John. It's always a pleasure to be a guest on your podcast.

Tricha Chivas: Thanks so much, John. We're excited to talk to you today.

John Carlin: So the email went out this week, and we're talking late June. In 2022, FSR has a new program that deals with how FSR will be recognizing endorsing recommending clinics. Mary, tell me how all that works and tell me the gist of this new announcement.

Mary McGowan: John, we're so excited this, week to have announced publicly this really exciting new initiative called the FSR Global Sarcodosis Clinic Alliance. The whole concept of this is to bring hospitals and Sarcodosis clinics together globally in the fight against Sarcodosis. So we were thrilled the very first presentation that we did was in March. We were, uh, hoping to launch this in January, but due to COVID, we couldn't for, um, obvious reasons, because the clinics were so engaged in taking care of COVID patients. And in relatively very short period of time, we are so thrilled that we had 22 esteemed founding members join us as they learned about this. Um, and we're continuing to accept founding, uh, members through September to continue to grow this and work with them as part of a leadership council. And, um, so anyway, this all developed because we, uh, saw this opportunity to be able to connect more closely with Sarcodosis clinics and hospitals. And after we had the vision for this, we actually sent out a survey to clinicians across the globe. Uh, and they, too, verified this opportunity and this need for bringing us all together to share best practices and to network both at the clinician and patient level. And that is why, uh, we decided to move forward with this extraordinary rare disease initiative.

John Carlin: Yeah, that is a lot, and there's so many things I want to unbundle here. But let's start with what are the ways that patients will be supported by this alliance? If I've got psychodosis, how does this help me?

Mary McGowan: Well, we want to ensure in every community across the globe that Sarcoidosis patients have access to the most up to date, uh, Sarcodosis information, education and support services. So what we're going to do is, through, uh, an application process, we're going to have Sarcoidosis patients apply to be peer led support group leaders. And we're going to host support group meetings monthly, uh, at institutions throughout the globe. In addition to that, some of the, uh, volunteers will receive training on how to be community educators and how to work with the media so that we can amplify, uh, the messaging about Sarcodosis about this rare disease throughout local communities, again, around the globe. So we're really excited to be recruiting for these leadership positions, and we're, uh, going to have ongoing trainings that are going to support these leaders and also provide opportunities for these leaders to network with each other. In other words, the, uh, other leaders across the globe in this effort to, uh, be able to provide these kinds of support services to patients.

John Carlin: So these leaders will be patients?

Mary McGowan: Yes, these leaders will be patients. We believe very strongly at FSR in the peer led leadership approach because it's, uh, really the patients who have the best understanding of what it's like living with Sarcodosis. And if we can empower them to, uh, be leaders of the support group sessions, then we believe that that has the strongest impact.

John Carlin: And do you foresee in a post covered world of these support groups would meet in person?

Mary McGowan: Yes, we do hope that they will be meeting shortly in person as the, uh, world hopefully continues to try to get back to normal and as we, uh, continue to fight Cobid and its forces, we do hope to have these in person. And up until the point when they can't be in person, we will be doing these virtually.

John Carlin: And you did ring one of my bells when you said media training, how to deal with the media.

Mary McGowan: Yes.

John Carlin: Maybe I can help you with that.

Mary McGowan: We, uh, would love that, John, of course, because, uh, we want to make sure that our volunteer leaders feel comfortable working with the media and, uh, have an opportunity, uh, to rehearse their talking points and again, empowering them so that they can empower others in their local communities.

John Carlin: Got you. So there's 22 of these centers. That is center the right word? We're going to call somebody who's one of the 22.

Mary McGowan: We're calling them founding members of the FSR, uh, Global Clinic Alliance.

John Carlin: Alliance. Alliance members. Alliance members. Got it. And there's 22 alliance members. But that's all around the world right now, as you and I are speaking on June 24, 2022.

Mary McGowan: Yeah. So right now, the 24 that have joined are from the United States. We are, uh, doing a webinar in July to invite all clinics globally, from around the world to the webinar about the alliance. And we're hoping, uh, at that point, that we will then have an opportunity to introduce this to International Sarcodosis, uh, Clinic Alliance potential members and have them join also as a founding member, I.

John Carlin: Know because I've talked to so many doctors in other parts of the world through the podcast that FSR has got a long reach. So I don't anticipate that. I think, uh, it's going to be very popular in other parts of the world.

Mary McGowan: We agree. And we're very excited to be working with our International Clinic, uh, future, uh, members.

John Carlin: Right. I got you. So now, we talked a little bit about the patient side, but this has a big upside for the doctors, the researchers, the clinicians, I guess, is the proper term. Uh, what is the clinician facing program that the alliance offers?

Mary McGowan: Well, there are several. I'll highlight a few. First of all, we believe, and we also confirmed again through the survey, that there's a real desire for these clinicians to have an opportunity for peer case review for, uh, cases that they have. Sorkidosis cases. So we're providing a platform for these peer case review sessions so, uh, that the clinicians can share the information and can get guidance, uh, and advice and input from other clinicians at other clinics, uh, worldwide. So that's one, the other one that we're really excited to be launching is a journal club, and we believe, uh, a, uh, Sarcoidosis specific journal club that's going to be supporting early career professionals and also encourages clinicians to stay up to date on Sarcodosis, um, medical literature, uh, is really going to be very effective. And again, an, uh, opportunity to bring these experts in these global clinics together to learn and talk about these journal articles. And then finally, we're also providing clinical, uh, engagement and education through, uh, our Clinic Engagement series. We just held our conference on June 15. We had, uh, I think, nine different countries that were represented over, uh, 100 registrants. And we had Dr. Menza from the NHLBI, who was, uh, the keynote speaker at this, um, really exciting conference. So we're going to be doing these quarterly, uh, and again, it's an opportunity to bring clinics together globally, to stay up to date on research and other topics around orchidosis care, education, research and support.

John Carlin: I guess the end goal for all this, because when I'm talking to patients on the podcast, what they're saying is, I go to my local doctor and they've never heard of Sarcoidosis. This would be the beginning of a way to fix that, right?

Mary McGowan: Correct. That's our belief as well. We do know, uh, that, again, uh, awareness is large, not only in the general population, so that if an individual does have psychedosis, uh, and has signs and symptoms of Sarchidosis, that they can bring that up to their doctor, hopefully for a shorter time period for an accurate diagnosis. But also to your point, John, from the clinician standpoint, again, there are, uh, so many rare diseases, and we want to make sure that Sarcodosis is front and center with clinicians, uh, and again, for the opportunity, uh, for a more timely, uh, accurate diagnosis, which, of course, can be lifesaving. And this is, um, critically important. And FSR beliefs strongly in making sure that we are working as hard as possible to bring this awareness to clinicians, uh, as well as to patients themselves.

John Carlin: Basically, what this is infrastructure that's going to have doctors talking to each other more, sharing their research, sharing their best practices, sharing their success and failure stories, so that more doctors and more places are conversing about Sarcoidosis and understanding best practices, best paths forward, making patients have better outcomes.

Mary McGowan: Absolutely. Beautifully said, John. Thank you.

John Carlin: Okay. All right, well, that's my job. I like distilling stuff. First, I want to ask you, I know that FSR has been doing, uh, some stuff with the National Institutes of Health, and there really is some momentum now to get some federal backing for some of the things that FSR is doing and for Sarcodosis related research from the government, which we never have had before.

Tricha Chivas: Yeah, thanks, John. We've been working really hard to grow relationships with the National Institutes of Health. And one of the ways that we've been doing that is to make sure that we are engaged in different institutes at the National Institutes of Health. So there's a lot of different institutes that have a particular focus. So Mary mentioned earlier that we had a session with Dr. George Menza, um, from the NHLBI, which is the National Heart and Lung and Blood Institute. And that is one of the, uh, areas, um, that has been a big focus for where Sarcodosis has been in the past. But we're also focusing in other areas, such as in the, um, environmental health studies area. So there's an institute that focuses on environmental impact, since we know there may be some environmental causes to Sarcodosis, um, and making sure we're part of that. We've been working with the organization that focuses on arthritis, um, and musculoskeletal disease and skin disease. Right. So we know there's different manifestations of psychosis, and we're having conversations now at all of these different spaces. In fact, this year in February, um, you may recall that FSR was able to participate in the NIH Rare Disease Day by having a panel, um, there. So really kind of activating and showing the NIH again, what we are doing and why the work that we're doing is so critically important in this space. And these are conversations that we're continuing. But in addition to the NH, we've also started working with the FDA on a number of different things in order to draw more attention from that federal level as well.

John Carlin: And are we making some progress with respect to this work?

Tricha Chivas: Yeah, so very excitingly. We just had a FDA patient listening session, uh, on pulmonary Sarcoidosis. This is a really, um, unique opportunity for FSR to get directly in front of the FDA and many, um, members of the FDA. We had 50 attendees at this session. It was a very well attended session, representing a lot of different institutes at the FDA. And for all of your listeners. I know everybody is a little, um, bit more familiar with the FDA now after cobid, but the FDA approves drugs, but they also, um, approve technologies that are being used for diagnosis. And they also, um, can help with the process, um, for repurposing drugs. So they have a number of different angles that we wanted to highlight that tie into the work and the needs of our patient population. And so what we did was we had this listening, um, session, which is a closed session, we weren't able to have that available to the public. That's the rules of the session itself. And then we had patients that came together, shared their stories. We had six patients, one caregiver. Mary shared a bit about things that we had learned from the community on this. And then, um, Dr. Lisa Meyer, who had provided the clinician perspective. And so that was our, uh, main goal was to get that information out. And these were really passionate stories that reflected what we heard from the community.

John Carlin: So what would actually happen in a listening session? The doctors are listening to the patient's talk and see how Sarcidosis affects their lives.

Tricha Chivas: Sure. Great question. So basically, it's an hour and a half long, um, meeting, and you have all of these different folks at the FDA who are making decisions about how drugs are approved or how technologies move forward. And we wanted to give them a chance. A lot of them are very scientific and don't necessarily have the chance to truly understand the patient experience. So, um, what this is, is a chance for them to understand how Sarcodosis is impacting individuals daily lives. What were the challenges that people faced with diagnosis, um, where did the technology, um, fail? And why do we need different technologies that might be able to do a better job, to do better at diagnosing? Understanding the drug, um, development process from the patient perspective would have been the barriers or challenges. So we raised issues there about diversity and, um, the challenges for diverse populations to be involved. We raise challenges for the drugs that are currently available, not adequately addressing the needs of, um, those living with Sarcodosis. So steroids is actually FDA approved in Sarcoidosis. And so that is oftentimes, um, a go to, as I know you've talked about many times on the podcast, a go to for clinicians as they're moving forward because it's cheaper there, um, are ways that it does work sometimes for some patients, but the cost was also something we reflected in those stories. So the stories were individual people sharing how all of those different things came to play.

John Carlin: Um, if nothing else, Sarcodosis is on the FDA's radar now, right?

Tricha Chivas: Yes.

John Carlin: There's so many orphan diseases and everybody's clamoring to be recognized, but it sounds like, thanks to the work of FSR, that's happening now. Our voice is a little bit louder, 100%.

Tricha Chivas: We are on the, um, radar, and we have some really exciting things that are going to be coming out as a result of that. And Mary, I don't know if you wanted to share some of the things that were coming out as a result of what we did with the listening session.

Mary McGowan: Absolutely. So after the listening session took place, we started creating, uh, a white paper that have a little bit more details on the session. And we're going to be launching the white paper in mid July. In addition to that, we're going to be hosting a community webinar in August, because we're so grateful to the community. I think. You know, John, our approach at FSR is always about engaging the community in our efforts. So, in preparation for the FDA patient listening session, we sent a survey to our clinicians, to all of our patients, and to our industry partners, because we wanted to get, uh, what they thought was the important messaging to send to the FDA. And that's how we came up with our messages. That's how we came up with the patients who had those stories that, uh, reflected those messages. And so we want to give back to the community and share the results of the survey and share the details of this really milestone event for FSR that took place. In addition to that, we are, um, also now working on the possibility of hosting a patient focused drug development session sometime later next year. And these sessions are much larger. They are open to the public, and they are important for advancing clinical trials and drug development. So we're really excited about that. And at the same time, we're also exploring conducting additional patient listening sessions and other manifestations, such as neurosychotosis or cardiac sarcoidosis to deepen the FDA's understanding, uh, and needs of those living with this complex disease.

John Carlin: Yeah, when you, uh, say neurosark, I'm so happy to hear that. I'm an orphan among orphans as the neurosark representative. So I'm, um, glad that that's getting spotlighted, uh, a little bit.

Mary McGowan: Uh, absolutely.

John Carlin: Yeah. All right, so now we got clinical trials, and it does seem like there's a lot more going on right now with clinical trials and trisha. Can you bring us up to speed on what's going on with that? I've talked to several different people, and I know there's a bunch of pharmaceutical companies out there, so can you kind of let us know where we are with that?

Tricha Chivas: Yeah, 100%. So this is a really exciting time as far as clinical trials goes in sarcodosis. In the past, we've had, um, one clinical trial running at a time, or many times even no clinical trials running in our space. But right now, um, there is a lot of interest and engagement in the clinical, um, trial space. And as you know, SSR has done a lot of background work to try to make sure that this is really possible for pharmaceutical companies to come into this space. So what's important and what we have done is we've made it so that they understand there is an eager population that's interested in clinical trials that wants more and new drugs, and helping to do that education on the back end for them. And then, in addition, we have really worked very closely with pharmaceutical partners, getting them access to, um, some of the key opinion leaders in the space, some of those expert clinicians that are out there so that they could have really good conversations and understand a little bit more about how their drug might work, whether it's a good fit for the clinical practices that they're trying to meet. And then in addition to that, we've worked really closely with the patient, so we know that patients are, um, interested, so we want to make sure we're getting that in front of them. And so we put in place a system that allows for people to know about clinical trials that are going on. So we do a lot of marketing and advertising, um, for that, for patients, so they can get involved if they're interested in being part of that process. And I'm really excited to share with you that we have seven sponsored clinical trials underway right now. And so, remember, I said there was about one or two happening, staggering over in the past. And now, um, we have seven potential clinical trials that are starting off. And just to clarify for your audience very quickly, when we're talking clinical trials here, we're talking pharmaceutical sponsored or biotech sponsored clinical trials, which are the ones which will end up resulting ultimately in a new drug. And so we have the academic studies which are building all the background for that, and they continue. And those are very important, but these are the ones that are getting much closer to getting that new therapy available for patients.

John Carlin: Seven.

Tricha Chivas: Seven.

John Carlin: That's amazing. Just in the time that we've been doing the Stark Fighter podcast, I think, like you said, one or two, and that was reason to celebrate. And now, a couple of years later, it's up to seven, potentially. And that could result in seven new drugs that patients could take. And the farther you can get those of us who are patients away from steroids, the happier we all will be.

Tricha Chivas: Exactly. Yeah. So it is a really exciting time. If anybody does want to know more, um, about clinical trials, please reach out to us, how they work. We're happy to give more background information, but this is the moment where we hopefully can get more and more engagement and more excitement around this. And this is why partly, we're talking to the FDA as well, because it's very important for us to continue those conversations.

John Carlin: So anything else happening that listeners should know about?

Tricha Chivas: Sure, yeah, there's a lot going on in research right now. Um, thank you to everyone who has supported all the research efforts that we have. FSR has been taking our research funding worldwide. You may know that we have funded over, um, $6 million worth of Sarco Dosis specific research efforts. And last year, we gave out about $200,000, uh, in research grants to academic researchers. This year, we're poised to give out over $300,000 in research funding to our academic researchers. And so this is really an exciting time. We just, right now, are in the final wrap up stages for our fellow that's going to be coming out this year. So we have received those applications and are finalizing the announcement, so keep an eye out for that. And very excitingly, we have grants that just came, um, out, uh, specifically for, um, pilot grants, which are early background kind of information studies that can help make it possible for researchers to get bigger funding to move the needle forward, and a new grant, which we have not had up until this point specifically available for cardiac sarcidosis, and we had an incredible amount of engagement around that.

John Carlin: Yeah, so let me ask you about that. How excited are the researchers, Mary, uh, for this opportunity?

Mary McGowan: Really very exciting, and I think it builds off the momentum that Trisha has been talking about, just about the interest in clinical trials and in research in the sarcodosis space. Again, we received the most applications ever for our pilot grants, and we received a very high number of cardiac sarcodosis grants, by the way, which was made, uh, available through a very generous donor to FSR, and wanted us to be providing funding, uh, specifically for cardiac sarcodosis. So we are so grateful to donors who allow this type of, uh, funding for additional support and research for, uh, sarcodosis. But I think all of this combined, John, is really building on this tremendous momentum for sarcodosis. Again, we see it at the FDA, we see it through the Clinic Alliance, we see it through research, we see it through the patient engagement, and it's just such an exciting time to really be moving the needle forward for sarcoidosis. We have our upcoming Patient Summit, uh, and thank you for your leadership, uh, as part of the Patient Advisory Group. And you all coming up with the title of Unveiling Possibilities Moving forward. And really, this is just what is happening at foundation for Sarcoidosis and for sarcodosis globally. And it's most exciting.

John Carlin: Yeah. Tricia, do you want to add anything to that?

Tricha Chivas: I don't have much to add, uh, except to say that we are also very, very excited. I know that the, um, conference itself is something we're very excited about. There's a lot of opportunities for us to engage around the conference. If you have not attended, um, an FSR conference, this is virtual, it is available. Last year, we had many individuals from all over the world participating in this. There's opportunities for networking, there are opportunities for engaging with global experts. So, um, whether you're brand new or you've, uh, had sarcodosis for a little bit of awhile, we'll have different tracks that can help you learn a little bit more about what's happening in the disease or what you need to know. And then we also have these great tracks that came out of the wonderful theme that you came up with that's really focused specifically on things, um, like understanding your, um, finances, how to talk to your clinician, how to engage and learn, um, from others when you're trying to navigate the symptoms of your disease kind of life hacks, as it were, in order to think about things. So we're really excited about, um, that coming up and what that conference is going to be when we invite all of you to join us.

John Carlin: Yes, the summits are wonderful, and I hope we get back to a point where they're in person again. Hopefully, we, uh, can get the pandemic behind us, and that's just my thought, just thinking, um, out loud, the networking opportunities, I think, are as good as they are virtually. I'm hoping that eventually we um, can all kind of meet in person. Because every time I've been for work to an event, you learned, uh, as much having a beer after the day, sitting around with your fellow conference as you do in the conferences themselves.

Mary McGowan: Right?

Tricha Chivas: And I think that's one of the things that will be another benefit coming from the Clinic Alliance is that um, opportunity for um, more local level engagement, uh, with others. And that is definitely something we want to be focusing in on as we move things forward there.

John Carlin: Got you. So let me shift gears a little bit, Mary. Last year, early this year, there was some really exciting programming, uh, focused on increasing diversity. I was involved in some of that and inclusion with respect to uh, sarca dosis. How will FSR be continuing that work?

Mary McGowan: Uh, John, this is such an important area for FSR. We believe so strongly in diversity and inclusion in everything that we do at FSR. But we were so thrilled, uh, with the very successful results, uh, of the Ignore No More Campaign. This campaign was focused on African American women and sarcoidosis. It was just an incredible reach with over 500,000 media impressions. We were so thrilled to have Gerald Prescott Galen, who's an actress of AMC's Walking, uh, Dead, and Bets All the Queen's Men. She's been living with sarcodosis for many years, but most recently was diagnosed with cardiac sarcodosis. She's been an amazing PSA for us that got over 1000 views in just one month and really helping to amplify our uh, messaging about this really critically important, uh, work. As you know, African American women have the highest prevalence of sarcodosis and by far the worst outcomes. And so it's important that the African American, uh, community understand this and also that clinicians understand this. And so that's what this was really uh, all about. This campaign. We're um, really excited as part two, we've just gotten uh, funding for uh, a part two campaign that's, uh, going to be called Ignore No More Act. Now act stands for Advanced Clinical Trials, Equity in Sarcodosis. And this is really going to be taking a deeper dive into how we um, can support and encourage clinical trial participation, uh, among all African Americans. Um, and our goal is to really learn from the community and to create strategies that can be captured in white paper, uh, and will be helpful tool for, again, both academic as well as, uh, industry sponsored trials. And we're really excited to be, as part of this campaign, hosting a congressional briefing to drive change at the federal level. So I hope listeners stay tuned for this really exciting expansion of this national campaign, and thank you for asking that question. We also have a Chance Zuckerberg initiative going on. I'll turn it over to tricia. She's been working very closely with the Chan Zuckerberg group, uh, on this exciting diversity campaign as, um, well, yeah, so.

Tricha Chivas: The Chanceuckaberg Initiative, I think it's really important to say, for the community. So everyone knows this has been not just a grant and then the work that comes, uh, out of that, but this has really afforded FSR a lot of other opportunities for advancing and growing the skill sets of the staff, for reaching out and understanding from others that are in the network, um, best practices that they're using that we can, uh, then bring back to our community. So this has really afforded us a lot of opportunities in order to expand and grow and move things forward for those living with Sarcoidosis, which is our ultimate goal. The actual grant itself will be looking to work with clinics. So, um, members of the alliance, or, um, others that will be working with those clinics and helping to improve the diagnostic, um, and what we'll call the referral pathway. And what I mean by that is the ways that you get from your local doctor, your, um, local pulmonologist, or your local generalist to those more expert, uh, care. And what is that pathway? Um, and how do we really define that so that we can, again, reduce the amount of time for diagnosis and improve the pathway for treatment, especially if someone's living more rurally and they don't have that kind of connection to a more urban center that might be more, um, advanced in this space?

John Carlin: I've never heard of that term before, the referral pathway. And you, um, guys are so good at sort of finding terms because you see this stuff all the time. The individual patient that lives in the middle of north or South Dakota or some rural area, in fact, not too far from where I live here in Virginia. That's what they talk about. They say my doctor had never heard of sarcle dosis before. Um, I'm not in a real large urban area, but we do have a large clinic here. People drive 4 hours to get to where I am in Roanoke, Virginia, for care, because we're the big medical center in this part of the world, right, serving the western half of the state of Virginia. But even here, there are very few Sarca doses patients. I might have been one of six for my Rheumatologist doctor, which is not the same as, um, going to Cleveland Clinic, which is what I ultimately decided to do, where I'm dealing with a center where that's all the doctor sees. So that's not so. That term is a referral pathway, and you're trying to sort of take that from being a rural road to an interstate to get you to that doctor quicker.

Tricha Chivas: That's all right. I think for us, what we're trying to do is help to identify those areas where patients are being seen and create a kind of a conversation both ways from, um, the major centers to some of those more local level individuals that are, um, supporting individuals living with Sarcodosis, and then, um, also allowing an opportunity for them to have that conversation back. And because a lot of times, even as you're going to Cleveland Clinic, John, you still have the local doctor that you're going to want to talk to, and giving that kind of conversation, allowing them to get the kind of education they need. And then when a case is more complex or they need more support, they can have that support that way. And that's what we're trying to build.

John Carlin: Awesome. So, so many exciting things. Mary, what else can listeners look forward to as we move forward over the next few months?

Mary McGowan: Well, we have so many exciting things that we've been talking about going on at FSR. Tricia and I are continuing to speak internationally at different conferences. As a matter of fact, in just two weeks, we're headed to Boston. We're both going to be speaking at the World, uh, Orphan Drug Congress, which is really exciting. It's a very large conference, and it's wonderful to have Sarcoidosis being represented, uh, there at that conference. So we're really looking forward to that. Uh, I think also the viewers, if they want to stay in touch with us in terms of the Clinic Alliance and its growth, if, uh, anybody is being treated at the center or alliance that is not on our web page and would like to share contact information, please, uh, let us know, because we want to ensure that we are reaching out, uh, to everybody to offer this opportunity to bring them into this really extraordinary, uh, unique effort. And also, please sign up for our patient conference, um, July 30 and 31st. It's going to be so exciting this year. Last year, we had over 300 attendees from around the world, so we're really looking forward to a really exciting conference this year as well. So those are just a couple of other events. We have some other events on our web page that are coming up. Uh, we have a couple of, uh, painting sessions, so I would encourage anybody who's listening to please join FSR if you have not, all you, uh, simply do is fill out a quick form with your email and that helps you stay up to date on all of our different events and activities.

John Carlin: Okay, so I've got a note here to ask you about life, uh, hacks and living with Sarquoidosis. So how will patients be able to take advantage of those or find out what those are?

Tricha Chivas: Sure, I'll jump in if that's okay. Mary.

Mary McGowan: Great.

Tricha Chivas: The life hacks things that we're trying to do here is learn from folks like you, John. Like, what do you do when the fatigue is overwhelming? Or what do you do when you're just having a really painful day? Or what are those things that you're doing? Life hacks are the tips and tricks that people have used in their own daily lives to navigate the disease and learning from individuals that are living with the disease to, um, do that. So this is going to be one of the exciting kinds of sessions that we're having this year are, um, beyond all of our wonderful chat boards and we have a coffee break that's open and chatting. This session is a chance for people to talk back and forth with one another, um, and share how, um, they are managing their day to day.

John Carlin: Got it. Life hacks. I love it. And so can people now sign up? Is there not a discount if you sign, uh, up early? How's that work? Early bird? Is that how that works? And how long is that available?

Mary McGowan: Early bird registration right through the end of the month. So it's a great opportunity. And there's also, John's, scholarships that are available. So for people who want to attend the conference, uh, there is a registration fee, but we want to make sure that there are no barriers to anybody joining this conference. So if anybody needs financial assistance, there's information there as part of the registration as well. Uh, and so, please, we, uh, want to be able to ensure that everybody has access to attending this really important educational, global event as part of that. But, yes, please pay attention to, uh, the early bird registration, uh, as well.

John Carlin: Got you. And if somebody can't afford it, but they want to be there, we'll find a way to make it happen.

Mary McGowan: That's absolutely correct. We want to make sure that everybody has access again, uh, to support education, opportunity to ask questions, all the networking that takes place. We understand that this is critically important to bring people together, living with Sarcoid doses to support one another. And that's what this patient conference is all about.

John Carlin: Uh, well, guys, look, we've covered a lot in a short amount of time. I'm just thrilled to have had both of you on. But more than that, thrilled to hear about all the momentum, uh, on all the different fronts. So congratulations on just really getting Sarcudos out there and advancing the cause you really deserve. Kudos.

Mary McGowan: Well, thank you, John, and thank you for all that you're doing. These podcasts just really help, uh, to, again, amplify the messaging, the incredible interviews that you've done, the highlights of the campaigns that you continue to do. We are so grateful to you for doing this incredibly important work and sharing, uh, this information worldwide. And so you're, uh, part of the great success, uh, that we are all having, as well as all of the patients, the entire Sarcodosis community. It's everybody working, uh, together to spread the word, to spread the awareness, to engage in initiatives. And this is really the result of everybody's success in working together, um, building this momentum. And we're looking forward to the near future to continue to see great successes on the continuation of this momentum building so rapidly now.

John Carlin: All right, well, thank you all very much.

Tricha Chivas: Thank you so much.

Mary McGowan: James on.

Tricha Chivas: We appreciate it.

Episode 63 | The birds and finding contentedness

Mon, 06 Jun 2022 10:17:33 -0500

When sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things.

Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives.

Here's my stab at it.

Show notes

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/

The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714

Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/

aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american

Merlin: https://merlin.allaboutbirds.org/

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Episode 62 | Garrie Farrow had troubles wearing her cute shoes. The problem was in her lungs.

Mon, 23 May 2022 05:00:00 -0500

Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.

Show notes

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

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The following is a web-generated transcript of my interview with Garrie. Please excuse any spelling or punctuation errors. jc

Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc survivor. Garrie, welcome to the podcast.

Garrie Farrow: Thank you. Thank you. So much for having me today.

John Carlin: So you said it's 15 years plus almost 16 years. And you knew the anniversary date, didn't you?

Garrie Farrow: It's actually uh August. I started getting my appointments in April. So for me, April is the anniversary. But I didn't get the official diagnosis until August 16 years ago.

John Carlin: 16 years. That's a long time. And I want to hear about when did you first know something was wrong?

Garrie Farrow: Honestly, I knew something was wrong 20 years ago. Um uh I have a thing that I love, cute shoes and purses, and I have these fantastic boots that I love to wear. They were the greatest thing ever. And my feet and ankle started to swell. And um I used to play basketball in high school, so I'm used to ankle Springs. I know what my feet and ankles will do, but this was not normal. So probably uh about four or four and a half years in total going to different primary care doctors. And I am um a taller, larger woman. And so I've always been told, well, you need to lose weight. Like, I exercise every day. I'm not losing any more weight. But they're saying the reason my feet and ankles were swelling was because of the weight. So I went and lost more weight. Still couldn't wear the shoes, moved to uh a different city, found a uh new primary care position. Actually, my second one here in Tallahassee was the one who went, this is not normal. You are uh about 30, 31 at the point. This is not normal. Let's send you for a chest Xray. And that's how my journey officially started.

John Carlin: Wow. Chest X. You ankles hurt. So the first thing they do is send you for a chest X ray, which wouldn't seem intuitive, but I guess the doctor must have been thinking pulmonary sarcoidosis.

Garrie Farrow: Then she kind of mentioned she goes, It could be your lungs, it could be your heart. She goes for your feet and ankles be swelling. There's something vascular going on, and we don't know why. She goes, I'm listening to just using. I'm listening to your lungs. It sounded fine. You're exercising, um you're uh not complaining. You have any shortness of breath. So let's figure out what's happening with you.

John Carlin: Okay? Was that conclusive or was that just the next clue?

Garrie Farrow: The chest X ray was the next clue. They um realized at that point because you could see my lymph nodes on X ray and the lungs looked suspicious. And at that point, I was sent for a media style oscopy. Basically, biopsy ended up with a brand uh new scarf. And that's where they definitely confirmed that, yes, this was circadosis because after the chest X ray, they said this could be leukemia or Sarcodosis. The way I remember it was, I heard leukemia and possibly sarkidosis. And the leukemia scared me because I hadn't uh heard of soccer doses before in any major detail other than burning Mac.

John Carlin: Right. So after they figured out it's sarcoidosis with the lymph node biopsy then. Did they start with the normal prednisone routine?

Garrie Farrow: No. I um was seeing a pulmonologist local to my city, and I was told stage one, that four stages. And since I was at stage one, I had no other symptoms happening. There was no reason for me to go on any medications. And that if I ever started coughing or becoming short of breath while exercising, to basically come back. And I had one appointment a year later, just everything's still the same. But at no point was medication even talked about. I did go back to my um primary and asked, okay, now I've been diagnosed with Psychnosis. What does that mean? And she told me she didn't know. She goes, I could tell you this much of what I remember from medical school. I can't answer any of your questions. Go back to the surgeon and went back to him. And it was, yeah, you have stage one, but that's good because four is horrible. You're at one, so there's nothing to do. My um current pulmonologist, who specializes in Sarcodosis, uh she said, no, stage one is no better uh than stage four. You had symptoms, you just weren't coughing. She goes, Your lungs did not look good. There should have been some treatment started then, but that took um another shoot. I think it probably was probably about another three to four years before I started any official treatment.

John Carlin: That just amazes me. And I'm curious about the um stage one, stage two, stage three, stage four, which is the terminology that we're used to hearing for cancer patients. And I've heard other patients that I've interviewed on the podcast talk about it a little bit. No one has ever uh used that term with me. Can you describe the difference between stage one and stage four? Other than that, it's worse.

Garrie Farrow: Yeah. What I was told originally was that, yes, my lungs um were cloudy, but they were not completely infiltrated. And you could see my lymph nodes on Xray. Stage four is pretty much you're on oxygen. The lungs are completely Gray uh and looks like um ground glass completely covers the entire lungs. At stage four is how it was described um to me initially, that each stage, your lungs get a little cloudier, a little bit more ground glass until it gets to the point where you're not able to breathe. What I've been told uh recently and confirmed with more research is that, yes, the um stages do impact how the lungs appear, but you could be on oxygen at stage two. You could be um walking around not fine, but without oxygen uh at stage four, it's just showing what the impact on your loans looks like when you're just trying to look at the X ray or the MRI or CT. Go um ahead and actually, stage one, I believe, only includes the link notes and um any of the others only impact just what the ones look like.

John Carlin: So you and I are both on a number of committees with the foundation for Sarcodosis Research. And uh what I'm hearing and maybe, you know, maybe you don't. But what I'm hearing is this stage one through 4 may be just reserved for pulmonary patients because everything you've described is lung involvement. Whereas with cancer, my understanding is when you have stage four cancer, let's say it starts in your kidneys or whatever, it then has spread to other parts of your body and it's metastasized. So when we talk about stage four with sarcoidosis, we're not talking about it spreading to other parts of your body, even though that can happen. But that's not what the stages describe exactly.

Garrie Farrow: Which I find interesting because it would make more sense that they actually classified it that way as they do in cancer, because technically, thankfully, due to one medication, my lungs are clear. My lymph nodes have shrunk in size from being really big to not being outfit. But I had other um organs being impacted by sarcotosis. So to me, following the cancer way of being, I'm probably more of a stage three just because I uh have multiple organs impacted by sarcosis. But currently it's only for lungs.

John Carlin: Got it. All right. And is it still currently after almost 16 years, is it still just in your lungs or has it spread?

Garrie Farrow: It's spread. And it actually took about ten years um to spread.

John Carlin: Um.

Garrie Farrow: I noticed some skin issues, went to my local dermatologist. And first I was told Eczema, then I was told Psoriasis, then I was told I had both went to sarcosis. Um dermatologist. No, this is sarcoid. That's what this is. And so, yeah, the past five years. So past five years, skin, eyes, bones. And now um I lost hearing in the left ear. Um and that's on immune suppressors. Um.

John Carlin: You said after about four years, a doctor said, oh, no, you need treatment.

Garrie Farrow: Yes.

John Carlin: What treatment did they come at you with first? And how has that progressed?

Garrie Farrow: The lovely steroids. The lovely steroids. I was on 60 milligrams for um about a year and a half. A little under. And um that, of course, weight gain, prediabetic, hypertension, um you name it. The moon face. All of it was taken off of that because of the impact. But at that point, there still was not a lot of discussion about new medications. And it was pretty much okay, your lapse look good. We're just going to kind of watch you. Then the eyes started, well, the skin. So then it was steroid injections directly into the skin and steroid creams, which thankfully um no over whole body and past. Then when the eyes and the bones kicked off, that's when I was put on methotrexate. No steroids at that point, thankfully. But then when the um bones kicked off, that's when they said, okay, I started low dose steroids and about five milligrams for three years. That pushed me over the edge with the diabetes. And let's see, um at that point, I think it was year two is when I went back, because by that point, I'm taking metformin and even though they said five um milligrams of steroids you shouldn't be gaining weight. I probably took uh 60 mg. I gained £80. Finally, after not being on steroids for a while, I had lost about 40 started the low um dose and they said you should be fine. Five milligrams is not going to impact you. I probably ended up gaining back 30. And so after year two, I said, okay, look, I need to switch because steroids and I are not working out. You're telling me I need to lose weight? I'm doing the things I need to do and yet my weight is not going in the right direction. It's still keeping up. So that's when I was taking off the steroids and put on the flutter mine, I think I believe I'm saying that correctly, but yeah, and I had to take off methotrexate and switch to uh Humera, which didn't work because of the bones. And I'm now doing rimicate infusions um or Influx map infusions with the Lip global cage.

John Carlin: Is that working so far?

Garrie Farrow: Actually uh going June to get repeat X rays of my fingers. Uh they showed no further damage is what it was last year. So we're hoping it remains the same now.

John Carlin: We've kind of just jumped right to I want to hear more about your eyes and your bones. Sure. When you have sarcoidosis uh in your bones, what does that look or feel like? How do you know it's there? What is the deal?

Garrie Farrow: I know it's kind of hard to see on uh camera, but the fingertips of these three fingers are actually about now only about two times the size of the fingers on this hand. And uh what started off as just a finger swelling then turned into I would go to pick up a pen or I'd go to pick up my purse or anything and um I could literally feel something crunching in my fingertips. And I was just like weird um because every once in a while your fingers might pop or you crack something. But I went, no, that is literally in the fingertips. I went to my local PCP and he told me it was finger clubbing due to socketosis and lack of oxygen. My sister actually has or has finger clubbing. She was diagnosed after I did because I pushed her. And so I've seen what finger um clubbing looks like and all her fingers were impacted.

John Carlin: I've never heard that word before. Finger clubbing. Fingers look like little clubs.

Garrie Farrow: Yes. I don't know if you can kind of tell on camera. You see how this one's more rounded than the other?

John Carlin: Yeah.

Garrie Farrow: It becomes very bulbous is the other word that they like to use. And your nail bed actually changes shape where instead of being just if you look at your hands, just regular nail bed, they actually expand because since the tip of your finger is getting bulbous, your nail bed has to go with it. And it actually started splitting because my nail bed couldn't keep up with the growth of the finger. So it was splitting. And as I initially pushed um back because I told him that every time I come to see you or see my specialist, my oxygen gets recorded at 98%. 99%. I'm not wheezing that I'm uh aware of, and nobody's told me otherwise. And I've had breathing tests. And if that was the case, all of these should be bulbusy and look funny. It is literally. These three went to see my Pomodologist, and I was on methotrexate. And so they were really concerned about any of the other side effects that method track state could have. And she goes, okay, is there anything else going wrong with you? Because your loans look great. I don't normally see patients like you because phenomenologist. So I'm not used to seeing healthy loans anymore. Anything else going on? And I went, look. Uh and she goes, that is not normal. And I haven't seen that with methotrexate patients. Let's send you for a hand Xray, which then worked into a whole body bone scan. And I now have a Rheumatologist because they realize that uh on Xray, my um fingertips, all of them, actually. But these three are the worst. My body has attached the bones um to the point to where it is broken down and my body is reabsorbing the bone. So the reason they're swelling is because um there's fluid, and that's what causes the swelling. And I actually have four toes involved as well. But all of them, you can tell all of them have been attacked. It's just these three were hit the worst because I dropped a box on them while moving.

John Carlin: Sorry, is it painful? Not dropping the box, but I'm just walking around every day with your toes. And does it hurt?

Garrie Farrow: Yes, it depends upon what I've done that day. Um some days are worse than others. I am a trainer, so I constantly um typing. And I love playing video games. So playing video games, typing certain things. Um there are days where I don't want to use my fingers. It's not worth it. Or I have become very adept at using my thumb and my ring finger on the right hand because um it's not sensitive to touch per se, because doing this does not hurt. But actually going to grab something unless I can um figure out a way to grab it down here. Think of the worst bruise um that you've ever had. You'll get that you hit it just right, and it doesn't really hurt until you get it in the right place. That's what it feels like.

John Carlin: Okay, let's talk about your eye.

Garrie Farrow: Yes.

John Carlin: What were your symptoms initially?

Garrie Farrow: Just a lot of redness. Tallahassee knowns for pollen. Uh and so I just put it off that it's the pollen. Um it is the green season, and it's uh a lot of redness. And then the conjunctive not conjunctivitis, but outside of your eyes were constantly inflamed, like, felt like I had dirt in them. And again, pollen. I just pushed that off. It wasn't until I have glasses that actually with a tent. I just lost the name of it that you go outside. The sunlight and your lenses.

John Carlin: Yeah, they get darker. Yeah.

Garrie Farrow: I walked outside. Even with that on, literally stopped in my tracks, uh shut my eyes, and was like, oh, my God, the Sun's too bright. My eyes literally hurt. The only way I could um describe it is like a shooting pain through my eye. And I stood there just going, oh, my. Okay, this isn't normal.

John Carlin: When was that? How long ago was that?

Garrie Farrow: That was probably about uh six years ago. Yeah, about six years ago. Um and again, I went to my local Icare uh provider, and it was like, yeah, this is arthritis. And was um prescribed steroid drops. Then it continued, and I was diagnosed with Uvitis and ended up getting referred to an ophthalmologist uh because I kept going to my optometrist because, of course, my glasses. And they were like, yeah, this is a Sarcodosis issue, not just, you know, you have recurring eye infection. And so that's how the eyes joined up.

John Carlin: Wow. Is that controlled?

Garrie Farrow: Currently, yes. Thankfully, with the eyedrops, uh uh I think I was on the eyedrops for about a year, and I go back in right now, thankfully, because the last test, uh my last exam came back fine. I'm set to not have to see them for a year, but when my eyes are unhappy, I probably see the ophthalmologist about every three months. And drops and tests I do because of the last one, has a beginning of a glaucoma in one eye because of the recurrent flares in my eyes. So we're kind of watching that.

John Carlin: You said the magic word flare, which is what a lot of Sarcodosis patients fear.

Garrie Farrow: Yes.

John Carlin: You get everything under control, and then all of a sudden you wake up one day and things aren't right, and the Sarcodosis has become active wherever it is in somebody's body. When you just use the word flare, are you talking about flare, as in bright light hitting your eye or a flare up of the Sarcodosis in your eye?

Garrie Farrow: Flare of the sarcidosis in my eye. Uh for me, the paint, it feels like a flare of a light in my eye, but my body has um flared itself. There's something in my immune system that has gone into overdrive and done its attack like it usually likes to do.

John Carlin: You mentioned Humera, and that didn't work. You said, because of the bones, I think, is what you said. What is the connection between Humera and bones?

Garrie Farrow: Actually, none. The only reason I was put on humor was an experiment because um the methotrexate obviously worked perfect for the lungs. But because my bones were starting to go, she was like, okay, we can't put you back on steroids, obviously. So what can we do? And at that point, um Humera. Uh it wasn't officially approved for off label use, but it was showing some impact on the immune system with patients that had Crohn's disease um and really severe, I believe IBS, um and I apologize if I'm incorrect on that one, but it was definitely used in Chrome's. She said, okay, let's try something, because obviously your body is still in overdrive. Let's find a different method to shut off uh your immune system. Humera was picked because there uh was another medication, and I'm blanking on it right now that again, it was another off label cancer medication, but there were so many other side effects, and one of them because of uh where my weight and my diabetes were. Uh she was really hesitant to use that one. So that's why Humor was used. And it was just a test to see. Would it help with my fingers? Because at this point, my options were limited.

John Carlin: And uh you ran it, what, for six months?

Garrie Farrow: I've been on actually a year because they said it's six months just to figure out if things are going left or right. And the first six months was to make sure my loans did not reengage, for lack of a better word, be changed in how they were going. The bones, after um six months at least, didn't show further damage. They were like this, and I'm never going to regrow the bone, but at least it didn't look like it had uh gotten worse. The reason I had to switch from Humera to the influx of Infusions is the bones remained where they were, but then I lost um the hearing in the left ear, and they're like, okay, so obviously something is not quite right again. So Humor kind of stable things, um or at least shut up my immune system enough, but not enough. So that's why I'm on infusions.

John Carlin: Let's talk about your ear. What happened there.

Garrie Farrow: Again? My wife and I woke up one Sunday morning with a sinus infection. I'm sorry. Through all of this with the whole eye things, I've had problems with my sinuses um um for quite a while, but it was after the eyes I ended up Sarcodosis caused me to have polyps um inside my nose and in the back of my throat had the polyps removed. They're like, yes, this is definitely sarcoidosis, but you're already on all these other medications. That's um what we would have prescribed for you. So call us back if something changes. I woke up one Sunday with a very bad sinus infection. Um the usual signs and symptoms. And that's um when I woke up that Sunday morning and my boyfriend asked me something, but he was on this side of me and I did not um hear him at all. And he thought I was mad at him. So it was later on the day, um throughout the day, he was like, okay, what did I do to make her mad at me that she wouldn't respond to me? And it wasn't until later on that day that he um asked, I said, I didn't hear you. And so he went over to that site and said something I'm like, I literally can't hear you. I had the same day appointment Monday. And they were like, oh, that's um your sinus infection. Once your sinus is clear, here's an antibiotic. Your hearing will return three weeks later. Found out um my ear hairs are fine. I have no tumor pressing on the nerve. Further research. It's just one of the uh symptoms that you get. Single sided hearing loss caused by sarcosis.

John Carlin: That is just amazing to me.

Garrie Farrow: Yeah.

John Carlin: So you're walking around your job is you are a trainer. What kind of training do you do?

Garrie Farrow: Software. Technically, the official Titles application is Trainer. Well, the full name is Electronic Health Record System. I focus more on the practice management side, but when we do major upgrades and releases, both of us end up training the doctors, the nurses uh and receptionists on how to use our system and what changes come into being.

John Carlin: You have the sarcoidosis all over your body. How does that impact your ability to just live your life day to day?

Garrie Farrow: It has an impact. And of course, the medication side effects play a greater role in how far I do things. The pain, like I said, it's preventing um me from I used to knit as well. I don't do that anymore because my fingers get in the way. And then eventually after time, it really hurts too. Nit I saved my typing for work so I don't play online um video games as much as I used to. Just because I need to be able to type at work. Just anything, to be honest with you, um gripping a jar to try and open it. So I bought a jar opener hearing AIDS so that I can hear on the left side. Um because the other part I realized with me not hearing, I was starting to lose how well I was enunciating words. Uh i won't call it slowing my words, but I was losing just um how well I was speaking. I parse um out my time, to be honest with you, if I know I'm going to take a trip, I don't do much before the trip and I'm definitely not doing a lot after it because I'm just that tired. And when I say trip, my doctors are in Gainesville, which is about a two and a half hour drive from where I am. And going to see a doctor is a trip. Because if I do it in a day, uh when I come back, I'm not going out to eat. I'm not doing what I usually do.

John Carlin: You're not talking about going to Paris?

Garrie Farrow: Yeah, I wish. I really wish. No, I'm just going to see my doctor. My father lives two and a half hours in the other uh direction. So even just that most people it's just a day trip. No, just a day trip is a lot of energy.

John Carlin: The fatigue is real. Then. Do you take a lot of naps? Do you need the naps? Do you need extra sleep at night?

Garrie Farrow: Yes. Problem is, you get to that point where you're so tired. Even though you lay down, you can't fall asleep certain days. I'm like that I've laid down. I would uh love to go to sleep, and I'm just that tired of where I can't. But yeah, naps are real. Naps are required.

John Carlin: Wow. Um sorry. Something's going on with Zoom on. My end used to be if there's just two people, you could talk as long as you wanted. And it's now telling me that I've got that 40 minutes time limit that you used to only get when there were more than two people. And I'm afraid it's going to time out on me. I've still got a lot more things I want to ask you.

Speaker UNK: Sure.

John Carlin: Let's end this meeting and go back um and click that same link again and see if it'll let us start another one.

Speaker UNK: Absolutely.

John Carlin: And if it doesn't, I'll go in and I'll get another link and send um it to you. Just watch your email.

Speaker UNK: Okay.

John Carlin: All right. So I'm going to end it and then let's click the link and see if we can rejoin.

Speaker UNK: Okay. Perfect.

Garrie Farrow: Okay.

John Carlin: All um right. Garrett, you're doing a lot of work with the foundation for Sarcoidosis Research, as we mentioned just a moment ago. And one of them is you're on the Women of Color committee. For people who aren't up to speed on that, what is that? Committee's responsibility?

Garrie Farrow: Sarcasm actually impacts the African American women. I was going to African American community, and it does. Uh but women are more impacted by the disease that if there's going to be a higher hospitalization rate, higher mortality rate, it impacts African American women about up to 13 times more often than African uh American men, even though they are impacted by the disease. Unfortunately, my sister died um from her circuit is three years ago. That's um what made me um join FSR.

John Carlin: We buried the lead. I'm so sorry.

Garrie Farrow: That's um okay. No, actually, it's not that I don't talk about it, but it's really uh the reason I joined FSR and why I applied in the first place, because um of her experience, um the difference between her experience and mine. When I saw the Women of Color committee come up, that really made me go, okay, I need to be a part of this because of her experience and mine and just in general uh and talking with different African American people and some of our residents and going um to see a physician, I don't want to say it's lack of exposure um to certain diseases and a lot of us are more prone to I'm always tired. I don't feel well. I don't have time to go to the doctor. So he's just going to tell me or she's just going to tell me what I already know. So I'm just not going to go. And I wanted to be a part of that committee to help get more word out there that this is not a disease, that you can just be like, oh, it'll be fine. I'm tired. I'll be tired tomorrow. I'll be tired next week. Let's just wait it out. Um and it's this disease. You cannot just wait. The longer you wait, the more damage that's done. And you can't recover from that damage. Once it's damaged, it is damaged. So that's what made me decide to join up.

John Carlin: What was your sister's name?

Garrie Farrow: Sharon. Sharon.

John Carlin: And she had pulmonary sarcoidosis.

Garrie Farrow: Pulmonary and skin. She never went in and got diagnosed for skin, but the spots on her face, um like you have the exact same thing. Go see a dermatologist. Don't have time, don't feel good. From the city that we were from. Um and her doctor uh only used prednisone. Steroids was their fallback. Even when with my methodrest state, when I realized what it was doing for uh me, I was on the road from Gainesville back home, calling her. Go see your doctor, get methotrexy. I promise you, it impacted her lungs away. I'm not sure if it was just due to time. She was a year and a half older than I was, so I'm not sure if it's just due to age, just due to um if Sarcodosis had been passing or a whole lot longer. Um so, yeah, by the time they caught it, by the time with steroids, her lungs couldn't take it literally. At the end, they said that we could um not use any more medication to get any of the fluid off of her lungs. Her lungs are filling up faster than we can get it off of her. And that's what actually killed her.

John Carlin: Oh, that must have been so sad.

Garrie Farrow: It was devastating on the family, because that's not what's supposed to happen. As my father said, you're not supposed to bury your children. So it was hard.

John Carlin: So you stepped up and reached out to the foundation for Sarcodosis Research, even though you had been dealing with Sark yourself for a good long time at that point, yes. And so now you are a fellow advocate, and our role as advocates is to help other Sarcidosis patients.

Garrie Farrow: Yes.

John Carlin: You're on the Women of Color committee. You're on the patient advisory committee with me. And are uh you a Navigator as well?

Garrie Farrow: I've um applied to be a Navigator. The application is uh closed in a couple of weeks, I believe.

John Carlin: Okay, so what does it feel like these days when your job is outreach and counseling other people with Sarcoidosis, and what do you say to them?

Garrie Farrow: It's a weird sensation, to be honest, because um it's not where I saw my life going. Even though I'm a trainer, I'm an introvert. And training for me is easy because I'm talking about the software. It's not talking about me in working with FSR, doing the advocacy. Um it's a different place for me to be because I'm talking about yes, I'm talking about the disease, but I'm talking about my experience with it. So it's pushing me outside myself in ways that I'm not usually used to, even though I do speak publicly for a living. So it's a different place. But I have to um admit that I do like it because getting the word out about psychedosis helps. Unfortunately, my coworker, I think she's okay with it because um I was so vocal about it at work. She was running into some health issues and was diagnosed with pulmonary psychnosis end of last year. Yeah. And it was just like, oh, okay. I'm sad that you're part of my club, but I'm glad you got diagnosed. Right. Because otherwise she was having some interesting things that kept coming and um went and had a biopsy.

John Carlin: So many people say they don't know anybody else that has sarcidosis. You had a sister and now you got a coworker.

Garrie Farrow: Yes.

John Carlin: It's amazing. So your coworker is doing okay?

Garrie Farrow: Yes. She's currently on methotrexate, and I think the last time they did uh the CT scan, things were looking good and they were going to keep her on the same dose. But she's in the first six months. I believe so, yeah. She's got that the milestones to hit before you can really say things are going well.

John Carlin: Is she also an African American woman?

Garrie Farrow: No.

John Carlin: Okay. So it uh just keeps on coming then. But I'm sure that she was curious because she had you as a resource.

Garrie Farrow: Yes. And it was one of those kind of different um conversations because it's not like she works in my Department, but she's not like a close coworker. So it was one of these we had to kind of talk to you for a second. And she goes, yeah, I'm going in. And I don't know quite what to do or what to expect. So I put on the FSR hat. So the first thing you need to do is go out to the FSR website, go to stocksoccervices.org, have your husband go out there as well, because your life is going to change, even though you haven't been feeling well and it's already been changing. If any medications are involved, then please don't do steroids. Do some, see what you can do. Your life is going to change and how it impacts you and your family. And she's got grandchildren. Um and you need to do this research now and don't think it can only stay within the loans. You need to think whole uh body. Don't just discount. Well, I'm older. This must be arthritis pain. It's like maybe it is, maybe it isn't.

John Carlin: Uh are you doing support groups or anything like that?

Garrie Farrow: I'm not. I thought about it, and my introvert little Gremlin was like.

John Carlin: Um.

Garrie Farrow: Uh I thought about it and looked and um I think this is the introvert part. There's nothing local to me. And so I was just like, okay, I never um done the next step.

John Carlin: I was down the road a little bit with starting. We were going to have an event and maybe have a support group grow out of that here in my region in Roanoke, Virginia. And then the pandemic hit and everything got canceled. And that was also about the time I started the podcast for me. I kind of feel like the podcast is my support group because people are listening to you right now, and they're hearing what you're saying. They're hearing what you're going through. And at least if they're looking for answers, they're hearing some of what is normal if there is such a thing with Sarca Dosis. So they may have similar symptoms or similar issues with the prednisone or with the methytrexate or with the ramicade you've mentioned all these things are things that I've been on as uh well. Initially. I'm just curious because you um said for a long time you didn't reach out to FSR and you wrote an op Ed for your local paper, and you said you didn't really research Sarquidosis at first. Was it because you just didn't want to know? Or you just kind of trusted your doctors to know what needed to be known and you were going to take your medication and go on with your life, go back to that time and think what was going on with you then?

Garrie Farrow: I trusted my doctor in that stage one. And again, my problem was I was so focused in on leukemia. That was my fear. And I had come home, and I found one dot Gov website that mentioned sarcoidosis and lung involvement. I was like, okay, but leukemia was huge. So once I got that diagnosis of sarcoidosis, I was so relieved that it wasn't leukemia that uh I didn't push further on myself or the doctor. Because, of course, now hindsight being 2020, even stage one, I um should have said, Excuse me, are we sure I don't need to do something else? Anything else. I didn't even think about getting um a second opinion. And even the only thing I will say, thankfully, when I went back to um my primary and she told me she didn't know anything about Psychro dosage and couldn't answer any of my questions and go see the surgeon, I ended up switching to an internist who knew about Sarcodosis. Uh but even then again, I put that trust in the physicians, um didn't educate myself on it until things started changing.

John Carlin: Yeah. And then all of a sudden, you jump in. I hear the same thing from people that and it can be kind of scary. I've been on some of the online threads where people just say such terrible, awful things about what's going on with Sarcodosis, but they're not saying it in a reasonable, thoughtful way, which isn't their job to do that. But I just didn't want to see it, and I didn't want to know. Terrible disease, terrible medication, blah, blah, blah, blah, blah. And then it would just stop. There wasn't any further explanation because people were just typing responses to one another, almost like reading a Facebook thread on a controversial issue, and people were just going after each other.

Garrie Farrow: And nobody's talking about that. Okay, yes, sarcoidosis is not a fun disease, but there are ways to function that yes, your life has changed, but this is not this is not the end of it. There's other things that you can do. Nobody likes to put that on the thread. That's not as interesting when you're looking at posts, right?

John Carlin: Yeah. People just have to be so sensational with their posts, but they're probably on that thread because they're either bored or mad or both. And so you're seeing the worst of I just stopped looking, honestly. But I found that I probably should have looked further faster. And I'm hearing you say the same thing.

Garrie Farrow: Absolutely. And I'll admit because I was surprised that I didn't know how long um FSR had been around. That when I started searching for sarcoidosis. Originally, I only got the Gov um sites, Medline, WebMD, and I just lost the name of the other one that has a symptom um checker on it that no doctor loves. And uh I did not start finding out about FSR until I probably was starting to search. Every week I would go out and just um Sarcodosis, pulmonary Sarcodosis. Let me see what I can find, because this is ridiculous, that I know it's rare. And at that time, I think it was 200,000 in the US were being affected. But there has to be more. There has to be more that this um can't be just this couple of sites. And luck was on my side and FSR popped up because I was starting to get to that point to where I think I've been doing that for about a couple of months. Uh i was starting to get frustrated because the information was always the same short little info or like you said, the posts that were just depressing me, making feel like, okay, I'm not going to die tomorrow, but I'm going to pass soon. I don't want to hear this anymore, uh but I found that it's our site.

John Carlin: Right. Is there anything else you want to add to this conversation? I appreciate you kind of bearing your soul here with our listeners.

Garrie Farrow: Honestly, if one person okay, not one. But if um more people would, if you're ever finding yourself going, okay, this is discounting your own symptoms and you're thinking, well, it must just be allergies, oh, I'm just tired. And I'm always tired. Sarcoidosis doesn't just impact the lungs. The um heart can be impacted. Your eyes, the skin, bones, you name it. It can um impact the body. And even with I don't have time, I don't have the energy. Just go to that one appointment and talk to your physician, um even if you're not the one having the symptoms. Everybody talks to their friends, everybody talks to their family. And you always hear that common issue with that family member, with that friend, talk to them, get them to go. Because even if it's not Sarcodosis, it could be anything and everything else they need to go in and be seen. And it's not to say that don't trust your doctors, um but if they tell you, okay, we think you have this or we have confirmed this diagnosis. Do your research go out there? The internet is huge. Yes. You're going to run into some information that's when you do more research just because you found one answer, you found one source you don't stick with just that one source. You look at everything as much as you can and get that knowledge for yourself so you know what you're going to have to live with and that helps better prepare you for your next office visit.

John Carlin: Find a doctor that is a specialist in sarcoidosis. Yes, there are lots of doctors who may have one or two Sarcoidosis patients. That's not the same thing.

Garrie Farrow: No, not even close to it. As you are well aware, Sarcidosis is so varied that there's a commonality amongst all of us. But how sarcadosis impacts you is different than how it impacts me and yes, it is a disease of granuloma but how your body takes that granuloma you really need someone who has a breadth of knowledge not just like you said, one or two Z is not enough knowledge for this disease, right?

John Carlin: thank you for joining me on the Sarfighter podcast.

Garrie Farrow: Thank you thank you for having me. I love listening to you. I've watched your podcast before so this is fantastic. This was fun.

John Carlin: Great. Thanks.

Garrie Farrow: Thanks. Bye.

Episode 61 | Expectations and Happiness with Sarcoidosis

Mon, 09 May 2022 05:00:00 -0500

Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there.

Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling.

In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives -- and their expectations.

(Be sure to listen at the end for the Full version of Zombie - The official song of the Sarc Fighter Podcast!)

Show notes

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Episode 60 | Jack Boepple’s cardiac sarcoidosis hit him like a linebacker. And he would know.

Mon, 25 Apr 2022 05:00:00 -0500

Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests.

Jack Cardioversion image

Show Notes:

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Below is a web generated text version of my interview with Jack Boepple. Please excuse any spelling errors.

Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast.

Thank you. Glad you to have me.

So you reached out to me after listening a little bit because, • • uh, you have cardiac sarcoidosis. How did you first find out that something was not right with your heart? • • • • • •

Um, actually, it was the event itself. So three years ago, March, • • um, I'm sitting on a couch • • • and I could feel • • some palpitations going on. And I put my hand on my chest and it felt like my heart was just rolling. • • So I asked my wife, can you just check my pulse? So she did, that looks fine. Then she put her hand on my chest and she's like, we got to go to the emergency room now because it was just doing all these flip flops.

She could tell.

She could tell there was something wrong. And I'm like, uh, • • I've had palpitations before. I'm fine. I'm just going to play through • • • • um. • • And so I didn't do anything. That was a Friday. • • And I woke up the next morning and I was still off. • • So I took a baby aspirin I sent a note to my primary, uh, provider, realizing through the portal, realizing she would not see it or address it until Monday. • • And then that day, we went for a long walk. We had friends over, smoked a cigar, had some wine, sundae, went for another long walk, came home, got on the rowing machine, rode for 45 minutes, and by rowing, actually felt better. Um, but I got a phone call on • • • • Monday morning from, um, the primary nurse. And she said • • everything you just described to me, you need to be in the emergency room right now. And I said, I don't want to go to the emergency room. So she made an appointment for to see the primary. And I saw her in the afternoon and, • • • um, she took an EKG • • and she used this very technical term • to tell me what she saw. It looks funky. I'm like, what does funky mean? Uh, so she's like, I think you need to go. I want you in the Ed. I mean, right now. • • And • • • • her office was like a 20 minutes ride from • • • • the, um, hospital. And I'm like, • I want to send you an ambulance. But you're not going to go, are you? I'm like, no, • • • • • I drove to the Ed, • • they checked me in, they did another EKG, and when I got to the Ed, they fast line me. Usually you have to wait forever. I got right in. They did another EKG, they said something's funky. Then they brought in a cardiac specialist. He said the same thing. So they kept me for observation. • • • And the next day, they • • • • • • • did an EKG and they said, based upon those results, we either going to send you to stress, uh, test, or we're going to do an angio on you, uh, angiogram. And I'm like, come on, • • • • • bring on the stress test, because, • • • • um, • I work out quite a bit. • • • • • • • Um, • • • • • • • • • • • • • • • • • • • • I'm losing the term, but all my blood numbers come back great. • I mean, there's nothing wrong with cholesterol. My cholesterol numbers are off the scale. Great. • • • • • • • • • • • I'm like, come on. There's nothing wrong. So then they • • • decided, um, they're working to do a stress test. They're going to do the angio. And I got someone asked me, are you ready to have stents put in your heart? Like, what are you talking about? • • And I'm like, sure, but you're not going to find anything. And so they, • • • • • um, • • • bring me in, I do the angio, and I come out of it, and they're like, yeah, you're right. There was no blockage. Nothing. I'm like, yeah, I told you that, right? But we still want to hold you. And now it's about 400 in the afternoon, and my wife's been there all day. And • • • • I say, go home. Go get some lunch, go take a shower, go feel better. • • And • • • • • in the room talking to a nurse, and next thing, there's four more nurses flying in the room, • and they're saying, we got to go to ICU. I'm like, what? We got to go to ICU now.

Wait, you're feeling fine? They've done the angio. • • • • • • • • • I know, but the listeners don't know yet. • • • But you and I live, uh, in a parallel • • • • lifestyle, uh, with respect to the way we work out. You were biking 120 miles a week. You've done a half iron man. You are on, uh, your rower all the time. So you're not just, like, a kind of standard walking around fit guy. Fitness is your lifestyle. • • •

Absolutely. • • • • • • • • Not only is it done for physically, but you probably can relate to this, that it's a mental release. And so when you're doing you're on your bike or you're working out, all of sudden a you're solving all the problems you're trying to work through.

Yeah. So the nurses come rushing into the room, you're sitting up saying, okay, something's funky, but I'm killing it on all these tests. And they keep accelerating the level of care, • • • • • right?

All these nurses are running around me, and I have one nurse just staring at me, and I'm staring at her, and she goes, hello. And I say, hello back. And she jumps backwards. • • So apparently I found out later that • • • • I think my heart rate is, like, • • • • 100 and $8200 something very high. • And apparently, when it's that high, um, you're coding. And so they're not used to anybody • • being conscious when this happens. And so • • • • they're willing me down to ICU. I'm fully conscious of what's going on. They get me in there, they hook me up, and, • • • • • • • um, • • • they're pumping me full of all these • • • drugs, um, to try to get the heart rate down, Amyotarone. They just give me an IV of it. They're just trying to do this. • • • And after about 8 hours of my heart at this elevated rate, they come in and say, • • we're going to have, uh, to shock you. I'm like, really? And • • • • • • • • • • • I'm like, in the morning now, • • • • • • • • • • • • • • • • • like, wow, this is real. All of a sudden, this is real. • • My wife is with me, and I'm like, I want her with me. But I'm like, that's selfish. I don't want her to see me be shocked. So I asked her, do you want to be here for this? And she's like, no. • So she leaves the room, and they give me, • • • um, a Twilight drug and said, you won't remember anything. • • Uh huh. So they hit me. I remembered, no way, • • • really.

And this is to get your heart rhythm back into a normal range, right?

It's a • • • reset. So they were trying to reset my heart. And it • • did. • • • • • • And, • um, they said most people, just after it happened, the nurse said, you did so well. I'm like, what does that • • • • mean? They said, you didn't swear. I'm • • • • • • • • • • • • • like, I got through that. • • • • • And, • • um, they described it like being hit by a truck. And I said, I don't know what that means, but I played football, and I feel like I just got hit by a professional linebacker, and I didn't have any pads on. I mean, it just wax the hell out of • • • • • • you. • • Uh, so the rest of the night and when you're nice to • you, you're watching your • • • monitors. • • • • • • • • • • And I said a prayer that • • • night, and I said I would never, ever talk about it to • • • anybody. • • And a few days later, we had someone visiting us, a good friend of ours, and she was on a spiritual journey long before I was. And she asked the one question where I had to tell what • happened. And she asked, how does this change your relationship with God? And I looked at her, and I'm like. I said, it didn't. I said, when I'm sitting there and I'm watching those monitors and I'm watching my heart, trying to get back to where it was, this abnormal • • • state. I said a prayer of thanks. I said, thank you for the great life I • • • had. Please watch my offer. My wife. Please watch over my • girls. I'm not the type of person to sit there and beg and plead. So I said a prayer of • • thanks, • • • mhm, because I've been thankful for all the great opportunities I've had. Sure. • • • So the thing I said I would never talk about. I talked about. • • • • • • And it's been a real journey since then. • So then the doctors are trying to figure out what caused all this. So they went down the Lyme disease • • route. • • • • They did, um, all these different things. I did a cardiac MRI. I don't know if you ever had to do one of those. That's not one of those MRIs where you can just put in the tube. I fall asleep in those things.

Mri I do, too. That doesn't bother • • me.

Yeah, so they put me in, but you got to hold your • • • • • breath throughout, um, the test so your chest isn't moving up and • • down. And so they can isolate what's going on the • • chest. And after that cardiac MRI, they sort, uh, of had an idea that maybe it was sarcodosis. So that was their working theory at that • • time. And they would not let me leave the hospital until I had an • • • • ICD and, um, pacemaker installed on my • chest. So from the time I entered the hospital, the time I left, it was eight • • days. Went through all these • • • tests. It wasn't • • • • • • • • • until several, um, weeks later that I actually did a Pet scan. And that was basically their • • confirmation • • • that it looks like sarcastosis. As you probably know, they never can say it is sarcodosis unless they do a • • biopsy and they can actually confirm it. Well, Pet is noninvasive, • • • so, • • • uh, they figured out it looks. • • • • • • • • • • •

Like where in your heart, Jack, is it on a valve. • • • • • • • • • • • •

Or the way it was described to me, it's both on the • • • inside and the external of the heart. And that's the tricky part is the external part of the • • heart. The internal part of the • • • • • • heart. • Um, you can eventually address through ablazion. But if it's also on the external part of the heart, the external ablaze procedure is much different. They have to go underneath your ribcage and • • • up and then break the sac around the heart, then try to do the blazing that way, which is a much more tricky operation. Yeah, but I went from being on no medications whatsoever to being on. I can't tell you how many • • • • • • pills. One of the reasons I reached out to you is a lot of the folks talk about how the sarcmens just beat them up. And I've been fortunate. • The methotrexate I'm • • • • on and, um, the pregnantone I'm • • on, they really didn't, um, beat me up too bad. But the cardiac meds just wailed on me. Amy odorone. One of the side effects of amioterone • • • • • • • is, • • um, sun. But if you get in the • • • • • • sun, you just start burning up rather quickly. Like I could literally, on a sunny day, walk across a sunny parking lot when my wife would pick me up from the train station and I'd be beat • red. So it turned me into a • • • • • vampire. And you're an outdoors guy, right? • • So, nine, 09:00 the morning to four, 04:00 the afternoon. I just stayed in the • • shadows, and it • • just killed me. Just. • • Absolutely. I wanted to be. • • • • • • • • •

Outside. Are you retired • • • or what is your job? Were you not working? What was going on then?

So I'm still working. Uh, • I work for, um, Blue Cross. Blue Shield of • • Illinois. I don't know if you've ever, um, heard of Lean or Six Sigma, but that's sort of my gig. Basically it's process improvement type of work. I go in and look at • • • • • • things. • • • • Um, yes, but in the summer months, I like to be outside. I love the • • • • • • • • fish and do all that stuff. So that was really a Downer trying to get addressed to those drugs. And there's other drugs that they keep on wanting to slow your heart down. So lisinopril is one of • • them. It just slows everything down. And I was being lethargic, and I'm like, this is not how I want to • • • • • • be. And so that sort of started the journey towards getting off. How do I get off? Uh, these cardiac meds. So they transitioned me about a year later to this drug called Soda • • • • • Law, which doesn't have any side effects. Amy, odorone, but it has different side effects, which is more • • lethargy. And I'm • like, I can't do • • • • • • • • • this. I started, um, exploring • • • Ablation and • • • • • my, • • • • • um, um, electrical cardiologist. He's done a bunch of Ablations, but the fact that it might have to be both internal and • external, he said, I want to give you • • to refer you to one of the experts in the field to do this, because if it's external, I don't have experience doing that.

Tell us all what Ablazion actually • • • • is.

So my understanding, I'm going to get this wrong, and you get people. Okay.

I won't correct you, that's for sure.

So it's basically the same approach as an angio. They come in • • • through the leg, • • and when they find a • • • • • • • • • • • spot, • • um, they believe is • • Sark, they try to poke it and figure out, is this causing the heart to go crazy or not? Yeah. And if it • does, then • • • • • they do, um, some type of cauterization or some type of way • • • to remove that tissue.

The granuloma.

Yes.

Right.

Okay. • • • • • • So I, um, talked to two different experts. • • • • One guy said, you just might have to live this way the rest of your life. And I talked to another guy like, you're too young to be living like • this. This is what we can do for you. And it • • • was considered a high risk procedure. But I'm like, I can't continue to live like • • • • this is like.

You can't pass a couch without taking a nap.

Right.

With talking about the lethargy and all • • • that.

It wasn't that, um, bad. • But for me not to be able to work • • • • • out, that was my • • • • release. I needed to be able to work out, • • • • and it • • just beat me to the point I couldn't do anything. Got it. So eventually actually did this • ablasian. And before you do the Ablasion, they stopped you on all cardiac meds because they want the SARC to be • • • active. So what does that mean? When the sarcas is active in the heart, that means you can go into V TAC. And • • so two • • days before the procedure, I'm off all cardiac meds. I'm sitting at my desk upstairs, my wife's downstairs, and my device • • • fires. And so I • scream and she comes running up and she finds me basically in a fetal • • • • • • • position, um, • • • because I wanted to be tack. And so the device did what it was supposed to do. They've called an insurance policy, and • • • it reset the heart. And • • • • • • so the guy doing the um, Ablaze like, yeah, we want your heart to be active so we can find it. And after he did the procedure, he came in and visited with me, and he • • • • • • said he was all amped up, all excited. He's like, we found five spots, and we got him. • • • • And he's like, no more um restrictions, no more cardiac men. You can start going back and doing your normal • • activities. • • And they were in there for five, 5 hours. And they said, we still see stuff on the external part of the heart. But you know what? We had you under for five, 5 hours, see what this • • • does. And here I am, a year later, I haven't had • • • • events, and I'm off cardiac meds, which is good. I'm working out again, but I always have to watch my heart rate because you don't want this little device to fire.

And so you still have • • • • • the um, pacemaker. Is that essentially what it is? Pacemaker and ICD ICD, which is basically shocks your • • • • heart. So if that thing fires, that means you're • • • • • • having laypersons from heart • • • attack.

Correct. And the technology in the ICD is nothing but amazing. They can set the levels as to when it goes into pacing • • • • • mode, when it, um, will fire a warning to your heart to say, Knock it off and then to the full • • • • • • • • • • • • • reset. It's just rather amazing. The other thing about the • Ablazion • is the device was pasted me, like, seventy, 70% of • • the. So instead of my heart working on its own device had to keep on helping it. And I'm like, that doesn't sound right to • • • me. And so after the um, Ablasian, I'm being paced less than one 1% of the which is just • • • • huge. My heart's • • • working by itself now, which is what I • wanted.

You're still taking a very small amount of prednisone, right?

Yeah. • • So when I did all this started, they had me at twenty, 20, and then they stepped it down. I'm at two, 2.5 • • now. • • • • • And • • the Maxwellsight, I'm on • • fifteen, 15 once a • • • • • • • • • • • • • • • week. I know that's • • • • low, • • • • but it's still a drug. Also, they throw in • • • the Alanronite and • • • • • the • • • um, looking for the other drug. I'm on folic acid. So the allndronate to try to help • • • alleviate bone loss. Um, I think the folic acid does something else to counter one of the side effects of the • • methotrexide. Okay. By Sark Dock, actually. Who's one of the docs has been on your • • podcast, Dr. • • • • • • Sparn. He's, uh, my Doc. • • • • • Wow. Listening to your podcast has started connecting a bunch of dots for • • me. I think one of the podcasts you talked about, what's the most important factor in dealing with Sarcodosis? I'm listening to this, and I'm trying to • guess, and I like health. And I was wrong. It was zip code. And I'm like, okay, I'm very fortunate to be where I • • am. One of the leading guys in Sark research is • • here. He's my Doc. So I got very lucky. • • • And my cardiologist, um, at Northwestern, have been nothing but outstanding. • • • • And the guy to do the Ablation, um, was out of the University of Chicago, who was considered a leading expert in doing Ablasians. • • • And I feel very fortunate. • • • • • • So I guess when I wrote you just like three years. • • • • • • Wow. I know a lot of this discussion on this is • • about the people that hits the most is the pulmonary people. • • • • • But there's a small population of cardiac people out here, too, • • that there's additional level of complexity that goes into it.

And even rarer is those of us who are neurosark people. • • • • • • • • So, • • • um, it is a lot. So, uh, let's back up a little bit. Thank you for sharing the story of your • • incident, but you mentioned your wife and your daughters, and you are my age, so I'm assuming that your daughters are grown or nearly grown. So tell us about your family • • • • life.

Yeah. So my wife and I, next year, will be married. Forty, 40. We were high school • • sweethearts. I was a football player. She was a • • cheerleader. Cute.

You got me by a couple of years on the marriage. I think we were on thirty 38th year, but, yeah, go ahead.

All right. • • • • • • • • And with, um, the Air Force Academy. So, uh, I was in the Air Force, and both daughters were born • • while we were in the Air Force. Uh, so the oldest, Christine, • is, • uh, thirty 35. The Madeline is thirty 31 • • • and is an occupational therapist. • • Uh, and she loves what she does. And she • • welcomed a son into the, uh, world a year ago. So it's our first grandchild. And my daughter Madeline is in marketing, um, living downtown Chicago, having a blast. • • • • • • • • • • So it's been a lot of fun with the girls raising them. They're, uh, both University of Iowa grads, and they had a lot of fun • there and learned a lot, and they made a lot of friends. In • • • fact, my wife's, um, husband is also she met him at the University of • • • • • • • • • • • • • • • • • Iowa. Again, both of, um, them are very close to us. • • So we're staying here for a while. Yeah.

Your daughter's husband, I • • • believe. Yeah. • • Right. Well, that's, um, • • • • • • • • • • • cool. So you've led an active life. You were a football • • • • • • • • • player. I've got to talk a little bit about the bicycling and so • • • • forth. So you, uh, were riding one 120 miles • • • a prior to this. And I consider myself pretty avid cyclists. But for me, one 100 miles a week is a week that I put a star next to in my logs. Like, this was a really good week. And you were doing that • • regularly. Yeah.

That was several years ago when I was really, just really into • • • • • it. And, • • • um, my baseline is jogging. So that's where I started. And I've • done four • • • • marathons, including the Boston Marathon, which was joy to Drew. Congrats. Thank you. • • • • • • And three of the four marathons, um, I did under four, 4 hours was my goal. And • • • • so I was training for this, um, one • marathon. And I usually never signed up in advance • • because if the weather was bad in Chicago, I didn't want to be running in nasty weather. And so I went to sign up the day before, and they were like, • • • no, it's, um, all full. I'm like, But I trained for a marathon. I'm ready to go. So someone then told me about triathlons. And I swam in high school, too. So I'm like, okay, I can do the swimming part. So I got on a bike and it was one of these old swim • bikes. And I realized, all right, I got to do something better than this. And so I started upgrading the • • bikes. • • And my very first Triathlon, um, I did was a half Iron Man because I trained • • • for a marathon. I'm like, uh, I can do this stuff. And I'm like, after I did it, I'm like, oh, I can do a full Iron Man. And my wife's • • like, not happening. • •

Uh, so a full Iron Man for people that don't know is you start out with • • • • a two, 2.4 miles, I • • • • • think. And then you ride your bike. One 112 miles, you run a marathon, correct. All back to back to back, correct?

Yeah. So I did a half version of. • • • • • • • • • •

That. So we • • • host an Ironman event here, uh, in Roanoke, Virginia, where I live, and it's a half. And I just did the bike part last • • • year. Not as part of the event, uh, but just to do it. And of course, here we live in the mountains, • • • • • so it's a very • • difficult. Fifty 50 it is. • • • Fifty, 56 miles. • • Uh, • • right. I can't imagine doing, um, all those other things on either side of it yet. Lots of. Lots of people do. Or to double it. That's. • • • • • • • • •

Crazy. But it's something I really enjoyed. I just enjoyed the feeling of being outside and in • • • • • shape again. That's part, uh, of the journey. I'm trying to what's my • • new exercise normal. So last • • • • • • • • summer I was only, um, able to get forty, 40 miles a on the • • • • • • • • • • • bike. I think I even wrote this to you. I'm pedaling, I'm pedaling. I'm like, I know I'm going fast. And I look down the speedometer and I'm like, no, you're • • • • • • • • • • • not. That's part of getting older, too. I understand that. • • • • But just the energy doesn't seem to be close to what I've expected on the trajectory of getting • • • • • older.

Now, the ablation that you had done, uh, when was that?

That was March of last year.

So you're still basically recovering from that, would you • • • • • • • • • • • • say? • • • • • •

Um, • • • • • again, I don't think so. • • • • • Because it's a year out and I had no cardiac events. So should I start having cardiac events • • • • again then? Maybe I need to go back and get another • • one. And I've heard there's been people that have to go back and get repeated ablations, but I think if I go back again, they're going to play with the external part of the heart because there's still the scarring there on • that. • • • • • • • But otherwise, I, um, feel pretty good.

So you're walking around feeling good, • • but your fitness level hasn't returned to the fitness level that you had pre ablaze and • precise.

No, not even close, right?

It might not. • •

Right. I will never run seven and a half miles every other day ever again. It just won't happen. Right. So I now do • • intervals. I was told that's mhm even better for me. So I get my heart rate to a certain, um, • • point, and then I walk until it gets to a certain point. And I keep on bouncing up, back and forth.

Right?

Because • • • • • • • • • again, I don't want this device to. • • • • • • • • • •

Fire. Um, it seems to me like you're living right on the edge. So you're doing intervals, which is where you run really hard and you watch your heart rate get jacked up. And then when it gets to a certain point, you walk until it comes back down. And then you do it • again. And, uh, then you walk until it comes back down. Then you do it again. And I've done this on the bike, and I've done it running as • • • • well. And the word, um, when you're running is, • • • • uh, Norwegian word • • • • • fartlek, which is not what it is. I think it's F-A-R-T-L-E-K. • Fartlek. It's named after the guy that developed. So, um, you're doing that. So you're really pushing the boundaries, right?

Yeah, I'm trying to get back to feeling fit. So I guess to answer your early • • • question, I'm better than where I was before the Ablaze, but I'm not preparedak event. Uh, so not even • • • close.

So how have you reimagined your life now since you've had to go through. • • • • • • • • • • • • • •

Sarcodosis? • • • • • • • Um, I think I take things more in stride now. • • • • • • Maybe it's just, um, everything I just look at, • • like, thankful for every moment I have now. Because, again, I thought this could have been it. I can't tell you how many times my wife and I have been told that if I had not been in • • • shape, no way. There's just no way I would have made it. So the fact • • • • • • • • • that I just, um, did a stress test, and the nurse looked at my record and she's like, I've never seen anyone be in V tag that long and come out of it. • Okay. • • • • • • So I feel very blessed. Um, so I try to look at that. I do a lot of volunteer • • • • work. I refocused my energies, um, and doing volunteer work again with the skill set I have, it's very specialized. • • • So I work with a group called Catch a Fire, which • • is basically a clearing house for, um, nonprofits to find volunteers. So over the last three years, I've done about over ninety 90 with • them, ranging • • • • • • • from, um, helping do Mission Vision value statements to Excel training, • • to doing data analysis to doing all these different • • things. And I've met all these different non profits across the United States. I've actually worked with some guy in Australia, worked with a couple of folks in • • • • • • Africa. It • • really seemed to be focusing more on • • that, hoping to get to retirement, um, at some point. Right. Because I think that • • • • will keep my mind • • active.

Right. And when you go outside and so you ride your bicycle • • • • • • now on the trails and paths, um, around Chicago, trying to stay off the road so you don't have to fight with the cars.

Right. So they converted old rail lines around here a long time ago. So there's a whole network. The one near me is called the Prairie Path. • And it's limestone paved • • • • • • and it's just a much safer • • ride. Back in my heyday, when I was really, um, going at it, I would ride on the streets, but I usually drive a half hour west of where I am to get more towards the countryside where there is less • • • • traffic. All it takes is one guy not paying attention • • and you're in a world of hurt.

Yeah, no, it's • • true. I'm riding more and more offroad myself, but I still do get out on the roads. We're very fortunate • • • that you can be rural very quickly when you're outside Roanoke, Virginia, as opposed to Chicago. • • • • Right. We're a small • • • • city. Virginia's Blue Ridge is how, um, we're now marketing this. • • • • • • • •

Region.

And you've got a grandchild. • • • • • • • • • • Um, four years ago I had none. Now I have six.

Holy cow.

So, grandchildren changed the way I, uh, look at • • • • life, that's for • • sure. And, um, I'm sure that that's the same for • • • you. • • • • •

Absolutely. He just turned one. And so, • • • • • • • • • • • • um, we've actually, uh, made going over the last three weekends. We're looking around, it's snowing outside. Let's see if our daughter wants to visit her. So we go over • • • • there, we eat lunch, and then we play for a couple hours until he's ready for a nap. So that's just really refocus what's going on. • • • • And he's at an age • • • where he's very active, like my oldest daughter was. And • • so it's like playing with my daughter again. He wants to fly around the room. And so it's just a lot of fun doing that. • • So it's the point. Now he recognizes me and as soon as he sees me again, he wants to start flying around the room. So it's a lot of fun. But I will tell you, making that little kid fly around the room, I'm gassed after it's over. Right. • • • So I think again, that's part • of dealing with how my body reacts to stuff. Now, before I could do anything, • • • • and I'd be • • • • • • fine. • • • • •

Yeah, it's frustrating. You, uh, can't do what you once did. So they call sarcaidosis the Snowflake disease because it impacts each of us • • • • differently. I've also run the Boston Marathon.

Um, Congratulations.

Thank • • • • you. I just always thought of myself as, uh, the guy that would always be fit and would always be healthier • • • • • than a certain large percentage of the people walking around beside me. • • • And I guess now I think I was arrogant to think that because sarcodosis just knocks you back a step. Two steps, three steps. • And it's hard to realize that • • • • • while playing with my grandchild tires me • • • • out.

Yeah, • • • • • • • • • • absolutely. Again, your form of, um, it is • • • much. I think each form is so unique, and I was so lucky to have my aspect of it addressed through the Ablasian. So it's sort of like. But every time I go out, I am looking at that watch going, Is my heart gonna play nice today or not? So it's always in the back of your mind, is what's going to • • • • • • • • • • • • • • • • • happen? To answer, I think, your earlier • • • • • question, it's always there in being thought of.

So your doctor, Dr. • • Spoon, said that your sarcoidosis is not active, but he described it as simmering. Can you tell us what that is? Because I hadn't heard that before, but I think there are times when that's been my • • case.

Right. So the last Pet scan I • • • • • • • had, he said, um, great • • • • • • news. There's no stark activity, uh, in the • • heart. There's no stark activity in the • • lungs. But as I look at your lymph nodes, they're • • glowing. And he said, it's not • • active. So let's just call simmering. It's • • there. • And let's not mess with your current medication • • regime, because ideally, they would love to taper you off. But I've had more than a few doctors tell me that if • • • you let the Sark flare again as you taper your meds, it comes back with a vengeance. And I really don't want vengeance, because vengeance, in my case, means I get more scarring on my • • heart. And then I got to rinse and repeat the medications, the ablaze again. So if I have to live with the • • medication regime I live on right • • now, so be it. And I think I've heard a couple of people on your • • • • podcast. I've just got to learn to live with what's being done. But in my choice with the cardiac Mans, I had another alternative, which was the ablasian. • Right.

But you don't want to have to do another ablaze, • • • • • because even if that works, your heart will never • • be what it once. • • • • • • • • •

Was.

Every time they do that, it hurts your heart a little bit more. Right. And every flare you get hurt your heart a little bit more • • • permanently. • •

And the phrase heart transplant has been used in front of me before, and that • • • • just scares me. • • • • • • • • • • • • • • • • • And again, I don't want to ever get there, • • • • but it's out • • • • • • • there so whenever they do an Echo cardiogram, they're looking to ejection fraction. And I'm like, • • • • • • borderline. Okay. And they're like, if it drops to a certain point, then, • • uh, the next consideration • • • • • is heart transplant. I'm like, let's not go there • • • • • • yet. Let's see what we can do without before we get there. • • •

Right. So you get up in the morning • • • • • • and do you work from • • • • home? What do you do? Do you go to work?

I'm in a hybrid schedule. So two days at home, three • • • • • • • • • days at work. • Um, and, • um, three days are downtown Chicago. Uh, so if you ever been to • • • • Chicago, the Blue Cross building is right across from Millennium Park. If you ever went and saw the • • bean. I can see that from my office. Wow. • • • • • • • • • • • And the Metro, which is the, um, commuter training. You take that in • • • • there. We actually have a bus that runs from this train station, um, to the building. But I walk. I walk every time. So it's about twenty, 25 minutes. And again, I like being • outside.

Yeah, I love the bean. The bean is so • • • • • • • cool. It's a sculpture that's shaped like a bean, and it's about the size of a small house. Is that fair?

Yeah, that's fair.

And it's just you see a mirror reflection no matter where you walk around it or under it or • • • • • • whatever. I love the bean. That's so cool. Um, and so you're, uh, walking twenty, • • • • • • 25, um, three days a week, and you're feeling fine, right?

Yeah, they're back. So I'm walking fifty, 50 • • • • • • minutes. It's feeling okay. • •

Um, • • • • • • • • • • • • • • awesome. You mentioned your relationship with God before we were talking, and other people have brought that up. Have you become more or less religious, or do you look at things in a more philosophical way? • • • • • • • •

Now I'm going to go • • • towards no. But I also will say I continued, I'm continuing my spiritual journey. I'm continuing to try to • • • • • • • • • • • understand my faith, • • • um, about that. So right now I'm reading something • • that's • • where there was a group • • • • • • • • of priests, um, that actually did a critical evaluation of, • um, the four Gospels, trying, uh, to say, is this something that Jesus really would have said? And it's • • • • • really in depth. So I keep on exploring things. They might not be popular topics to talk about, but I'm just trying to • • • explore my • • • • • • • • • • faith. If you think about the volunteer work, I • • • • • • do think Christianity, a lot of it is about giving • • • • • • • • • • back. So, yes, I've been doing more and more and more of • • • • • • that. • • • • • But, • • • um, it's something I continue to explore, and it's just to • • me, it's fascinating. I think the underlying • • message • • • of Jesus, • • • • again, • • • • uh, love your • • neighbors • • • • • and love God above all. I think that's a great message, and it's hard to practice it sometimes loving your neighbors, but it's great to aspire to that. • • • • So I'm really interested in understanding about • • • that.

Got you, Jack. Is there anything else you want to add at this. • • • • • • • • • • •

Point. • • So this is an um aside. • • • • • • • • So after I had this cardiac • • • • • • • • • event every year since, two, um, thousand and one, I've gone on a canoe • • • trip. I don't know if you heard of • • • • • • • • • • • • Quetico.

Yes, I've been there three times.

Okay. • So for the • • • • • listeners, if you've heard of Boundary Waters in • • Minnesota, it's a place where there's no motor boats. It's canoes only quadico is the Canadian version of that. It has bigger in • • size and it may allow fewer people • • in. So I've been doing quadico trips, eight day, seven night trips since two 2001. And when nine • • • 911, we were in the • • • • • • • field. Nine 911, I what happened • • • on • • Tuesday? And, • • uh, uh, we were in the field. We had no • • idea. And when we came out of the field, we were • • • • • • • • • • told they like playing jokes. And you come back like, there's something like the camp ran out of hot water and the guy that picks us up • • • • says they • • • bombed the towers in the Twin Cities. • • • Um, I'm like, who's going to bomb Minneapolis St. Paul, right? Yeah. And so we thought it was a joke. We didn't believe it. And it took a phone call • • • home and for my seven year old daughter at that time to say, yes, they bombed New York to make it • • • • • real. • • Anyway, I go up to quitaco every year. And after this cardiac event, I said, I'm going. And my wife is like, you're not. I'm going. • • • • • • • • • • • • • • And two months before a • • trip, I got a blood clot. So with • • • • • this device, the ICD pacemaker, um, they run wires, uh, through your veins, down to your • • • heart. And typically, if a blood clot shows, it shows up • • • early. But mine showed up late. So now I'm on blood • • thinners. And if you know about the credit • • • • • • • code, there is no seven 711, no emergency care. You're all by yourself.

There's no communication.

Correct. Unless you have a • • • cell phone, right? Yeah.

When we went, there were no cell phones, no walkie talkies, • • nothing.

And • • so I'm going. Even with this heart condition • • • • • • • • • • and my reaction to Amy odorone • • • • • and the blood thinners, I'm going, which • • is • • • fairly not smartly, dangerous. A month before I went, I'm owing the grass • • • • • and come in and take a shower. And I'm washing myself. I'm, um, like, what's • • • this? I had a • • • • • hernia. • • And so I'm like, come • • • • on. So I bought one of those • • • • girdles that pushed it in. So I, um, went to Quidico that year with. You • • did? Yes. With all that going on. And my wife was not pleased, but I'm like, I got to go. This is sort of, um, like my annual • • • release. So I thought you would appreciate that • • story. It goes back to what I need to, um, be. • • • • • • • • • • • • • • • • • •

Outside. One of my bucket list things is to get back • • • • • • there. It's been over twenty 20 since I went, but I went three years in a row with a local group of guys and the fishing is the best fishing I've ever had in my • • life. But it's rigorous because we would paddle, I think, about one 110 miles where they dropped us off. Then we would sort of paddle back to a pickup • • • point in the canoe. And then you Portage between the Lakes. So you're carrying your canoe, you're carrying your backpack, you're looking out for • • • • bears, and you just basically fished your way to the, um, next campsite. Is that how you guys did it?

Absolutely. • • And there's • • something people like. It's just canoeing. Well, the portagne is what kills people. So I brought a couple of newbies this year, • • • and the portages just kick their butt.

Yeah, well, they can be a mile • • • • long. Some of them are very short. You hop for there's four, 400 within the Quittico Wilderness.

Right.

And only, as I recall, only two, 200 of even have names, and the rest of them are just regarded as large puddles. They're not worthy. But you go • • • • from body of water to body of water to body of • • • • • • water, and you follow your map and, • • um, hope you don't get lost. I had some scary moments, but I can't believe you're able to do that with • • • Sarcardosis.

Yeah. So I'm still doing it • • • • • • • • • and made it through that trip. Uh, okay. But, • • um, that's what I want to • • • • • • do. And you've talked about it, I think, on your podcast several times • • about you got to get back • to what feels right. Your body might not be one 100% the way you want it, but you got to get back to what you want to • • do • is make the effort. So I just keep on making the • • • • • effort.

Do you carry the canoe yourself when it's your, um, turn on the. • • • • • • •

Portage? This year I did, yes. This year I, um, canoe because I had a solo canoe, and I did • • • a solo paddle because I was with two other guys, two new guys, and I couldn't find a four fourth.

I • • • • sold. Okay. Call me. What month do you go? • • •

Typically, I typically go after Labor Day just because the mosquitoes are down. Okay. And that's a good time to go. And again, if you're going back there at some point and you want a suggested • • • route, I've been through all the entry points in quadico, and I've hit most of the major paths, so I definitely have suggestions or, uh, tell you where it would be fun to go.

Okay. Yeah, we'll have to talk. We'll start boring people really fast if we get into a deep dive into this remote Canadian • • • • • wilderness. • • • • • But, yeah, I can't believe that I'm, um, talking to somebody else who's actually been there, because when I bring it up, • • everybody, they have no idea what I'm talking about. Sometimes boundary waters mean something to people. Right. But critico, you fly in on a float plane, they drop you, uh, off, and • • then it's fantastic. I love it. Well, Jack, thank you so much good luck at the critico this year. If you're planning, uh, to go in September again. • • Absolutely. Okay. All • right. And I wish you all the luck in the world with fighting sarcodosis. • • • And thanks, uh, for fighting the good • • fight.

Alright. Uh, thanks and I appreciate you let me tell my. • • • • • • • • • • • • • • •

Episode 59 | Angelica wants to know how her grandmother died.

Mon, 11 Apr 2022 05:01:00 -0500

Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.

Show Notes

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

email Angelica agauptman@gmail.com

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

The following is a web generated transcript from my interview with Angelica Gauptman.I'm sorry for typos and misspellings.

Welcome back to the Sarc Fighter podcast. And joining me now is Angelica Galtman • • in California. Angelica, welcome. You're just across the bridge from San Francisco.

Yes. Thank you. I am. Yes.

All right. So that you are in Marin County, and you were just telling me that, it's often foggy in San Francisco, but it's always beautiful in Marin County.

Yes. As soon as you kind of cross the middle of the Golden Gate Bridge, it's like a wall. • • It's kind of like the Marinas, the heavens, and San Francisco the opposite. It's very funny. Always very funny to drive across the bridge.

Got it. Okay. Well, now, um, you are a high school student applying, to colleges. But we were just talking before we began recording. You are looking to go to some fairly impressive colleges. Where have you applied?

I've applied to a lot of the IVs, Stanford, Harvard, UPenn, Columbia, um, and a lot of the UCS. UCLA is definitely my top choice. So, yeah, I guess they are, um, • pretty hard to get into, but we'll see.

Yeah, well, those are high levels, but • • you obviously have the grades in the background and so forth to handle that sort of thing.

Possibly. I don't know what they're looking for, so I have no idea, but hopefully something will get me there.

Let's talk a little bit about your sarcoidosis story. And when I say yours, I mean your grandmother's. So your grandmother died from complications related to sarcoidosis. Is that the best way to put it?

Yes, I'd say so, yeah.

All right. And you are trying to figure out if there's a connection between prednisone and vitamin • • • D, • which, um, could be very controversial. There are so many places to start here, but let's just jump in with your grandmother's story. Um, when was she diagnosed with prednisone?

Um, two, 2007. She was diagnosed with pulmonary circuit two, 2007 and then pregnant on, I believe, in two 2009.

Okay. And she took prednisone for quite a long time.

Up until two 2017. Okay. Did she pass IN 2017?

20 17.

Took it all the way through?

Yeah, all the way through. Do you know what levels of, uh, doses she was • • • taking?

Do you know what I think it was? Two 200, but I will need to • • • • check.

Wow. Okay. That would be a lot. Yes.

She was on a lot of it.

A lot of PREDNISONE. All right, so she was also taking was she prescribed vitamin D or did she just take vitamin D?

Um, at the time, they were prescribing her vitamin D supplements. But now that I look into her case • • file, she, um, was over producing vitamin D naturally, as a lot of pulmonary circulations patients do. It just didn't come up on the scans because the vitamin D that she was producing was actually in an inactive • • state. So it didn't come up on the scans that they did. They had to do a scan for inactive vitamin D to find it, but they didn't do that. So they just prescribed her more vitamin D supplements instead of doing the second • • scan.

Got it. And what eventually led to her death, according to your hypothesis • • • then? • • • •

So, • • • • um, I think that the overabundance of vitamin D that was in her system, • • • um, um, with the over, like, immense amount of predisone that she was • • taking led to the hemorrhage that she had. So the hemorrhage was an, um, internal bleeding. It was a really big part of it. A, um, really big bruise on her abdomen. And she developed that about a week or • • • • so after, um, they up her credit zone a little • • bit because they had been taking it down slowly. But they upped it again. And once they upped it, she, um, kind of developed that bruise. And that's what we went to the hospital • • for. And, uh, that's what led to, um, her kidney failure and her untimely death. Um, so I believe that the prednisone and vitamin D are what caused the hemorrhage or the bruise. And that's what caused her to pass away.

Now you're taking a course where you look into correlations, causations, that sort of thing. What is it?

It's AP research.

And so you started looking at other patients to • • see if your grandmother was not the only one. Tell us why you thought that and what you found.

So, um, in the class, we are taught to, uh, create our own project. And it was supposed to be a gap in the knowledge that is there today. And so this, to me was a gap in the knowledge because nobody. I talked to researchers at Stanford, UCSF that had, um, been researching, especially pulmonary circuit oysters for years. And they had never come across or thought of anything like this. And there were no real scholarly articles out there about this or scholarly work. So this, um, was my gap. And in the class we're supposed to create our own methodology and collect our own data. So I thought that there was no better way since there was no data on this out there, there was no better way than to • • • interview other patients to see if • • • they had similar experiences with prednisone or vitamin D. And, um, so when I talked to quite, um, a few, they had told me that they never developed hemorrhage, uh, that large bruise on their abdomen. However, they told me that they also were over prescribed vitamin • • • D because again, the doctors and researchers didn't do that second scan for the inactive form of vitamin D. And they said that when they were taking vitamin D and prednisone, there were a lot of detrimental, • • • • um, effects on their bodies that they experienced. And one man actually told me that he did start to • • • • • ease very easily when they upped his Joseph prednisone while he was on vitamin • • • • D, which didn't happen when he was off of vitamin • • • D.

Interesting.

So he was continuing to take the • • pretinosome, which, most of us do. I think that's for ninety 90% of patients, that's the first line of defense is prednisone. So almost everybody listening to this, if they have had • sarcodosis, has, taken prednisone. But the vitamin, uh, D is the wildcard here. And so you found at least one other person. How many patients have you • • • • • interviewed?

So, um, through FSR, I interviewed • four. And, um, then outside of FSR, on my own findings, I interviewed about ten to fourteen.

Okay, all right, got it. And these patients were • • • all were they taking vitamin D because they were in the supermarket and they said, oh, I'm going to take vitamins. Vitamin D is good for you. Or were they prescribed vitamin • • D?

No. Every single one of them was prescribed a vitamin D supplements, except for the very few of them, • um, whose doctors actually thought to do the scan for inactive vitamin D and saw the circuit patients overproduce it naturally. So, aside from the two that were taken off the supplements because of that second scan, everybody was prescribed vitamin D • • supplements.

Got it. So are you still actively looking for people to • • interview?

I am, yes. So, • • um, while my project itself is due in the next month for the class, I will definitely be continuing to research myself. So, yeah, I'm definitely looking, um, for more interviewees.

Yeah. Okay. So what kind of person was your • • • • grandmother?

My grandmother was amazing. She was just the best person. She was my best friend, really, • truly. She, uh, was the one who kind of. My parents were both at, um, work • • very most of the day. So she was the one who I kind of spent most of my time with when I was, um, • • little. And, um, when I grew • • • • • • up, • • um, she was honestly an incredible woman. She taught me to Cook, she taught me manners. She taught me everything honestly. And, um, while the disease definitely slowed her down, she had oxygen tanks that she was trapped to and she couldn't really • • travel. Even though, um, she loved to travel, she, um, still somehow • • always helped me with whatever I needed. She always was there for me. Whenever I had an event at school, she would always help me with those. • • • • So she • • was so absolutely selfless. It was honestly inspiring to me.

That's an amazing story. And then, when did she first start noticing that there was something • • • • • • wrong?

When I was about • five. I, um, don't even remember what she noticed. If I'm being honest, I think I was too young to notice. And when she passed, I was only thirteen.

Well, um, it's been a long time, so I don't really know what caught how she noticed it, but I just • • remember, I, um, was sitting on the couch when I was five and there was a man that came with oxygen tanks into our house at about seven or eight. 08:00 p.m. It was late for me back • • then, and, um, he strapped her to the oxygen tanks or strapped them onto her, I guess so. That's just what I • • • remember. I remember she had a lot of trouble breathing.

That's what I remember it to • • • • • be, ultimately, because it's very hard in many, um, cases for doctors to even diagnose • • sarcoidosis. So I was just wondering if you, um, knew anything about • • how that all came.

So, um, they didn't really know what it was back then as well, as much. It was even less research than it is now. And at that time, she was in her late fifty 50s and told her that she was one of the really rare people and that, um, this illness only traveled • • within very young women, which now we see is not true at all. But so, um, yeah, at the • • time, they didn't expect • • it. They, um, thought it was actually literally anything • • • else, but, um. Yeah, so that's what they kind of told her. They said that you're one of the rare women that isn't in her twenty 20s or 30s that got • • • • this interesting.

Wow. So she lived with you're, spending most of your time with her, your parents are at work and she's got these oxygen tanks. What was her daily life.

Like?

It was very selfless. Again, I don't know how to describe • • • it. She was on bedrest, sadly, for most of the last few • • • years. • • Um, it was very hard for her. The oxygen tanks and the absolute lack of energy that she had and the lack of mobility that she • • had. So, um, her life was mostly just taking care of me and my little cousins. I have three little cousins who are all boys, who at the time lived with her as • • well. And, um, so she would take care of us all the time. She would Cook for the whole • family. So her daily life was just taking care of others. Always. It was always helping my little cousins with their homework, helping me with my homework, cooking for us, cleaning the • • house. So, um, it was selfless, very selfless.

But she was able to do that even with the sarcoidosis. Uh, did she have the oxygen tanks that you pulled on a little cart or how did she get Around?

Um, well, the oxygen tanks were on wheels, so she could walk and kind of stroll them. But cooking wise, uh, she kind of just stood and seared it on the pan and put it in the oven. And then for all of our homework, we would be usually sitting for that and then cleaning wise. I mean, she didn't mop the floors or anything like that, but she'd, like, clean up the dishes or something that required standing and moving her arms instead of running around the house.

And she just continued to do that right on through Sarcaidosis.

Oh, • • • • yes.

Wow. What was your grandmother's name?

Lydia Glaser.

It must have been very sad for you and your family when you took her to the hospital because of what looked like a bruise. And then she didn't come home.

Yeah, it was shocking. And, um, there were definitely aspects of, • • um. Um, I guess layers of shock that came in as well, because it was really interesting. She had • • actually been doing, um, a lot better on the last two days before her passing, then her entire week • that she spent there, and they had actually signed her out of the ICU and put • • • her into, um, normal hospital room. And she would be fine to go over the night. So, um, in the morning, they said that she would be free to go. And then that morning, her kidneys started shutting down. And so, • • • um, that was the shocking, um, part, I think it was. Two days later, she passed away. Um, and again, the kidneys were also another kind of thing in my research that I looked at as well, because, um, of kind of the connection of vitamin D and prednisone and all that. So all of it, her whole case, honestly, is just such a • mystery. And I'm trying, um, so hard to kind of connect the dots, but it's very hard, as you can • • • imagine. • • •

Wow. So you reached out to the foundation for sarcoidosis research. Did you just find them with a Google search or how did that come to be?

Yes. So I believe, um, it was my sophomore year of high school. I'm a senior now, so two years • • • ago, • •um, I don't know. I felt like I was old enough to kind of • • • start researching and looking into her case file and all that • • stuff. But, • • • um, before I even began or thought of my • research, I just wanted, um, to do something that would contribute to the community that my grandmother was in, and that would kind of, I don't know, not honor her, • • but, yeah, I guess it is honor her in a way, because I just saw how she was such an active person. She loved to travel before Circuit Oasis, and now she couldn't. And I couldn't imagine a whole community, um, of people going through that. • So not only in, um, her name, but also for the community. I just kind • • of reached, um, out. I asked for an internship, but I was sixteen 16 and would, uh, only give out internships to eighteen 18 • • or. And so they, um, actually had to redo. I feel terrible for Mindy. They had to redo their entire paperwork to allow me to intern and volunteer at the age of • • • sixteen 16. And I got put with Jim and his peer mentor team • • and. Yeah, it just kind of took off from • • there.

Wow. How old are you now? Are you eighteen?

I'm eighteen 18.

Yeah. Eighteen 18 now. Okay, so you've been doing this for two years? Yes. And will you continue, uh, to work with FSR?

Definitely. I'm trying to start a youth advocacy program at my high school where I've been trying, um. It's getting very close. • • • • Um, I have a lot of ideas for FSR, and, uh, I also just love working with everybody in the gym. It's a great community that I love being a part • • • • of. • • • • •

Wow. • Um, and so when will you feel like you have a sample size • • • or enough, uh, data to move, uh, • • forward with • • your project or feel like it's Done?

I don't think I'll ever feel like it's done if I'm being honest. I think I want to keep pursuing this until I get a solid answer or until I start testing it in the lab or something like that. So I don't think my hypothesis is enough for me. And I don't think gathering enough evidence to support it is enough for me. I think I want to actually see the evidence to have, um, it kind of be enough and then see how we can. I mean, if it's true and if it's plausible to • • see how I can keep, um, helping and seeing if maybe people should start testing for this inactive form of vitamin D and seeing how I can kind of make that happen. So I don't think that it's honestly ever going to be done for me. This project. Um, even with hypothesis, that's definitely not what I'm ending with now.

You will know soon if you've been accepted to Harvard or one of these other places. Are you going to be a medical student? Because you told me that you also might look at being a lawyer. I can't imagine you having the time to study for the bar exam and doing this.

Yeah. So it really depends. I'm just so unsure of my major right now. I have two very different kind of spheres and majors that I could go into right now. I've been working at a law firm for the past couple of years. I really like that sphere, um, of work as well. But even if I were to go into law, I think that I would still continue this with what time I had and maybe pass it on to somebody else and just kind of help out as much as I could. But I definitely don't want this project and this hypothesis to kind of • • • end because I think it is, um, so important. So if I do study, end up researching medicine in College, um, and have that be my major truth, this is definitely going to be my preferred project. But if it's lost, then either I'll pass it onto someone or just continue it on my downtime.

Yeah. So have you gotten any sort of interest, uh, from researchers that are already out there in the field, that have been through all of this and are looking for • • something to dive more deeply • • • into?

So I've run this by, um, the two researchers that I think would be most interested in right now or have given me the most interest. • • Um, one young man, uh, at Stanford, Dr. Matthew Baker, he showed a lot of interest in this. He's helped me with, the abstract of my paper and my hypothesis. And then Dr. Laura Copp at UCSF, uh, has also kind of responded and given me • • some feedback. So, I think it's kind of • • also, I can't imagine being a researcher and • • having all of these medical students with me and then • • having a high school student trying to call me and say, • • hey, here's what I've been • • • doing. Why don't you take me • • on? So I, um, don't know. I can't imagine really that happening for me now, but it's shocking that I've gotten so much feedback from all these researchers. And although these responses from them so far, those two have been the most promising. But I definitely want to start trying to get into labs and things like that, which maybe would be possible with Stanford, um, sooner or later.

So you do realize how otherworldly this sounds - high school student calls and says, I need you to look into this. And here's what I think. And I've already interviewed people, and that just doesn't happen every day.

Yeah, I know. It's silly. I feel silly talking about it if I'm being honest, because I don't know, I can't really take myself seriously. So I can't imagine all of these people with MDS and PhDs and who've been working and researching for so long looked like taking me seriously, which is completely fair. But somehow I've been getting all these responses. So I guess something must be working or they just find me to be funny.

I don't know. But you have a real story with your grandmother, and you obviously have, uh, a drive and a passion, and you've gone about it the right way by going through the foundation, for sure. And if you've got Mindy and Jim Kuhn on your side, um, those people, uh, when they speak, people listen.

You're doing it the right • • way.

Hopefully. Yeah, hopefully. We'll see. Hopefully this takes off somehow.

All right, so you and I are speaking right now. On the ten 10 March in 2022 and very comfortably, um, ten, 1030 in the, uh, my time. And you are up at what, seven, 730? Yes, 730. And about to go to • • • school?

Sadly, • • yes.

So where do you go to school?

Redwood High School in Larksburg, California.

Um, Redwood high School. And you're taking AP • • • • classes?

Well, not a lot. Three.

So when you get to College, how many College credits will you already • • have?

More than I need. So I think I would have a semester, uh, done already.

It depends how many classes I take there.

Right. And if you get into, say, Harvard, they'll accept all of your AP credits. You • hope.

I hope my AP exams should allow for • • • • • that, um, to be a realistic thing, but I'm not sure because some of the classes AP research. I don't think there is a College credit for • • it. But we'll see. I don't know. It depends on every school takes different credits, but hopefully they'll take all of my credits.

Yeah, • • well, and are you taking a lot of chemistry? Uh, and so forth and so • on?

Biology. I love biology. Biology. Physiology. Tech. Chemistry. I took last year. It's very interesting, but for some reason, physiology and biology is really my thing. I really love that.

Okay. But you said, sadly, you're going to school today or are you just over it?

Yes. Senioritis is kicking in. I'm not sure if you're familiar with the term, but it's really big over here. I'm, um, done. I'm ready. I'm ready for the • summer.

Yeah, we had that term even back when I was in high school. In the dark ages.

Yeah.

All right. So if somebody wants to reach out to you, if they listen to this and they want to be interviewed or they want to share a story.

How do they do • • • • it? Well, they can email, um, me or they can. I mean, I have social media. Um, that's also a thing, but, um, they could also reach me through Mindy or, uh, Jim as well. They all have my, um, contact information. But John, I can leave, um, my email with you as well.

Okay, let's do that. And I'll just put it in the show notes and then people can just click on that and send you an email. And I don't think you'll, um, be covered up with people, but hopefully somebody listening to this will say, wow, this young lady is on to something. And let's give her the opportunity, uh, to succeed.

Hopefully. Okay. Angelica, thank you so much for your time this morning.

Episode 58 | Time to get ready for Sarcoidosis Awareness Month!

Mon, 28 Mar 2022 05:00:00 -0500

April is Sarcoidosis Awareness Month! In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate! Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc!

Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Episode 57 | Sarc Patient Robin Goble has lost her balance, but she’s fighting to keep her life upright.

Mon, 14 Mar 2022 05:00:00 -0500

Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons. Then sarcoidosis showed up in her life. Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems.

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Shakshuka

Serves 4

Ingredients and Prep

· 3 Tablespoons Extra Virgin Olive Oil

· 1 - 4 oz can green chilies

· 2 onions chopped

· 1 – 14.5 oz can diced tomatoes

· 2 yellow/red bell peppers

· ¼ cup water or vegetable broth

· 4 cloves of garlic

· 2 bay leaves

· 2 teaspoons tomato paste

· 4 eggs (or 1 can Chickpeas drained)

· 1 teaspoon ground turmeric

· 2 oz feta cheese (or vegan tofu feta)

· 1/8 teaspoon cayenne pepper

· ¼ teaspoon black pepper

· 1 – 2 cups of fresh spinach, washed and torn

· 1 Tablespoon Za’atar (optional)

· Cooked cous cous or rice for serving

Heat oil in skillet. 12 inch is best. Set heat to medium/high. Add onions and peppers – sauté until soft. Add garlic, tomato paste, cumin, turmeric, black pepper and cayenne. Cook for about three minutes.
Add in chiles, tomatoes, water, spinach and bay leaves. Bring to a simmer and cook 10 minutes.
Remove bay leaves and transfer 1 -2 cups to a blender (or use an immersion blender) until smooth and return to skillet.
Make 4 indentations with a spoon with the sauce and crack an egg in each well. (For vegetarian version add chickpeas in place of eggs) Cover and cook 6-10 minutes. Add feta and sprinkle with Zaatar.

Serve over Cous Cous (we like Israeli) or rice.

(I adapted this recipe from The Complete Mediterranean Cookbook: 500 Vibrant, Kitchen-Tested Recipes for Living and Eating Well Every Day (The Complete ATK Cookbook Series) Paperback – December 27, 2016) My family loves all the recipes we have tried. https://www.amazon.com/Complete-Mediterranean-Cookbook-Vibrant-Kitchen-Tested/dp/1940352649

Episode 56 | Dr. Shu-Yi Liao wants to know how sarcoidosis moves in the body.

Mon, 28 Feb 2022 05:00:00 -0500

Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not? Beyond that, what can be done to stop or prevent the disease?

Show Notes

More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Episode 55 | Erica Courtenay-Mann Has Sarcoidosis on her Vocal Cords. But she is speaking out!

Mon, 14 Feb 2022 05:00:00 -0500

Erica Courtenay-Mann was feeling tired all the time. Beyond tired. Fatigued and unmotivated, but nobody understood. It was the onset of sarcoidosis. After several attempts for treatment -- her doctor noticed her neck didn't look right. This is her story.

Show Notes

Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Bonus Episode | Universal Barriers in Dealing with a Chronic Disease: A Sarcoidosis Perspective

Mon, 07 Feb 2022 05:00:00 -0500

In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own. The discussion is led by Sarc Fighter host John Carlin.

Show Notes

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 52 | Dr Divya Patel and Novartis are looking for a few good Sarc patients

Mon, 31 Jan 2022 05:00:00 -0500

As we begin 2022, there is even more reason for hope. On this episode of the Sarc Fighter podcast, Dr. Divya Patel joins me. Dr. Patel explains the clinical trial process and describes the trial she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research.

Show notes

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 54 | Calvin Harris’ lungs are clogged with Sarcoidosis -- but he wants to run a marathon.

Mon, 17 Jan 2022 05:00:00 -0500

Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community. He also writes a popular blog called Run Your Own Race. And that's what he is doing. In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a marathon with his sights set on completing the famous New York City marathon in the near future.

Read Calvin's Blog https://sarcoidosisnews.com/category/columns/run-your-own-race-a-column-by-calvin-harris/

Foloow Calvin on Peloton Calvinfnharris

Follow me on Peloton SarcFighter

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 53 | Reasons for hope in the fight against Sarcoidosis in 2022

Mon, 03 Jan 2022 05:00:00 -0500

As we begin a new year it's time to take a look at what's ahead in 2022. Both for ourselves and for the sarcoidosis community at large. In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medicine, sarcoidosis awareness or patient outreach.

Show notes

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 51 | Amy Whaley fights on through a life that was different than she imagined.

Mon, 20 Dec 2021 05:00:00 -0500

Amy Whaley is a caregiver. Her husband, Bobby suffers from a severe case of sarcoidosis. They are fighting sarc together. In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married.

Amy is the first care giver to appear on the Sarc Fighter podcast. Like all caregivers, she is essential to the life of the person with Sarcoidosis. Without these loving people's sacrifice, we could not go on with our daily lives. It's important to note the impact sarcoidosis has not just on the patient, but those around them.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.warrendrobinson.com/

Episode 50 | Warren Robinson‘s father died suddenly. And the family struggled to find out why.

Mon, 06 Dec 2021 05:00:00 -0500

Warren D. Robinson is a Television Producer with a law degree to boot. When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc. In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death. Here was a man who lived to help others and always took great care of himself, from getting proper exercise to eating right and everything else healthy people do. Then one day he just didn't wake up.

Learn more about Warren and his background as an attorney and producer for Netflix.

The back story to Buried by the Bernards -- Warren's show on Netflix https://indianapolisrecorder.com/indianapolis-producer-brought-us-buried-by-the-bernards/

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 49 | Adam Bernardi has sarc in all the wrong places.

Mon, 22 Nov 2021 05:00:00 -0500

Adam Bernardi has a great job working in Hollywood. He's met some big name celebs, and even worked with them. He's edited or worked on projects you've likely seen. But none of that could prevent sarcoidosis from attacking his nervous system.

In Episode 49 of the Sarc Fighter podcast, Adam shares the story of how difficult it was for doctors to diagnose his sarcoidosis, and how the disease has shut down parts of his body that at times can cause embarrassing situations. Thanks to Adam for an honest and forthright discussion.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 48 | Dr. Jinny Tavee is a neurosarcoidosis specialist with a unique approach to fighting the disease

Mon, 08 Nov 2021 05:00:00 -0500

Dr. Jinny Tavee, the Chief, Division of Neurology at National Jewish Health clinic in Denver is one of the leading experts in the United States when it comes to neurosarcoidosis. Neuro sarc only affects a small percentage of all sarcoidosis patients, but her approach for treatment extends beyond those who are unfortunate enough to have sarc in their brain or spinal cord. In Episode 48 of the Sarc Fighter Podcast, Dr. Tavee delves into how your entire body, mind, and spirit can be engaged to help you overcome sarcoidosis-related issues.

More About Dr. Jinny Tavee https://www.nationaljewish.org/doctors-departments/providers/physicians/jinny-tavee

See a Talk Jinny gave for the Foundation for Sarcoidosis Research https://youtu.be/zzOT-tpsUBQ

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 47 | Women of Color Fight Back!

Mon, 25 Oct 2021 05:00:00 -0500

African American Women are three times more likely to suffer from sarcoidosis than whites, and their sarcoidosis mortality rate is 13 times higher than Caucasians and 1.5 times higher than African American men.

Why?

What is going on with women of color that isn't happening in other groups? Why are they having a harder time than everyone else. There are multiple reasons, and the Foundation for Sarcoidosis Research is hoping to get to the bottom of it.

FSR has created the Women of Color Patient Advisory Committee and the Women of Color Clinical Advisory Committee to address these concerns. Starting in 2021 these patients, clinicians and researchers are going to be looking at what's behind these terrible outcomes for these women.

Join me in Episode 47 as Sarc patient Chasta Posey and Dr. Ennis James of the Medical University of South Carolina take a deep dive in the causes and effects of the way African American women are treated.

The news release from the Foundation for Sarcoidosis Research has more startling statistics on the impact on African American Women. https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Hear more about Chasta's story! https://www.podbean.com/ew/pb-n9ky6-d8615a

Meet Dr. Ennis James: https://youtu.be/SaKMLmfYmCA

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 46 | Lisa Pflug is early in her journey with neurosarcoidosis, but already suffering the effects.

Mon, 11 Oct 2021 05:00:00 -0500

Lisa Pflug's hand started shaking one day and she couldn't make it stop. For months neither she nor her doctors could explain it. Then they started looking at her spinal cord, and they found the problem.

In this Episode of the Sarc Fighter Podcast, Lisa shares the story of her journey through sarcoidosis, from her shaking hand to life on prednisone and hopefully a better life thanks to Remicade.

Lisa is right handed and she is thankful sarcoidosis has only affected her left hand, allowing her to pursue her passion as a painter. Here is one of her creations -- a flying egret.

Promised links are below. But here are a couple of photos from my trip to Zion, Grand Canyon, and Bryce National Parks.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Episode 45 | Fantastic results from trial of new sarcoidosis drug from aTyr Pharma

Mon, 27 Sep 2021 12:50:57 -0500

Atyr Pharma has just released the results of a patient trial of a drug called aTyr 1923. The drug had shown early promise, and the trial more than verified that thinking.

Atyr 1923 Not only allowed patients to dose down or even off of Prednisone, but it actually improved lung function in patients -- something that is rarely if ever accomplished.

In this episode of the Sarc Fighter podcast, aTyr President and CEO, Dr. Sanjay Shukla joins me to talk about the results, the meaning behind the trial and what happens next, as this leading edge science advances to the next stage, and hopefully to the point where it becomes a solution for so many people in the Sarcoidosis space.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Juliet's Story: https://beatsarc.podbean.com/e/juliet-coffer-can-barely-walk-without-losing-her-breath-but-she-was-determined-to-step-up-to-fight-sarcoidosis/!)

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 44 | Brandi Cleaver faces down what may be a terminal case of sarcoidosis.

Mon, 13 Sep 2021 05:00:00 -0500

Living in a rural area can be tough when you are faced with a rare disease like sarcoidosis. So Imagine living in remote North Dakota and trying to find a diagnosis and medical care. That is the case for Brandi Cleaver. At one point she and her friends held fundraisers in order to get her to Cleveland and the care she needed. At one point in her life Brandi was one of those people who showed up on horseback during search and rescue operations. Now, she is stuck at home most of the time, practicing self care and raising her son. In this episode she shares her story of fighting back against sarcoidosis.

John's Moose Encounter! https://youtu.be/fXXTdVo90Zg (You'll enjoy this

Meet Joe McCorry: https://beatsarc.podbean.com/e/episode-4-joe-mccorry-has-been-fighting-sarcoidosis-for-a-long-long-time/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 43 | Joe McCorry has been fighting Sarcoidosis for a long, long time.

Mon, 30 Aug 2021 10:45:57 -0500

Maybe we could call it "sarcoidosis creep." For people who have chronic sarc, it seems like if it doesn't get better, it slowly gets worse. When that happens, people's lives change. Their activities become more and more curtailed. Usually because their health is declining. That's what happened to Joe McCorry of Chicago. In this episode of the Sarc Fighter podcast, Joe talks about how sarc has taken over different organs in his body and how it's forced him to slow his life to a crawl.

The latest blog from Charlton Harris: https://sarcoidosisnews.com/2021/08/23/dont-have-anything-prove-with-sarcoidosis/

Charlton's Interview on the Sarc Fighter Podcast: https://beatsarc.podbean.com/e/sarc-fighter-charlton-harris-is-having-a-hard-time-breathing-a-really-hard-time/

John's Moose Encounter! https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 42 | Juliet Coffer can barely walk without losing her breath. But she was determined to step up to fight sarcoidosis.

Mon, 16 Aug 2021 05:00:00 -0500

Juliet Coffer lives in a cottage in the UK. By her description, it is a small home, yet her lungs only permit her to take a few steps at a time without running out of oxygen. In this episode, Juliet describes what it is like to push on when every breath seems to be an adventure. But not only that -- she has found a way to get around her house in a way that has raised tens of thousands of dollars to fight the disease.

Learn more about her remarkable spirit in this episode of the Sarc Fighter Podcast.

From Juliet:

Just Giving page for details of my fundraising, if anyone would like to donate to my campaign for SarcoidosisUK: https://www.justgiving.com/fundraising/julietcoffer

Interview with BBC local TV where they came to film the last 100m of my walk: https://www.youtube.com/watch?v=KNZlMiNV2z4

SarcoidosisUK ‘ Patient Story’ and the full story behind why I did my fundraising: https://www.sarcoidosisuk.org/juliet-coffer-patient-story/

I can be contacted on

Twitter: @julietcoffer

Instagram: juliet_coffer

Facebook: Juliet Coffer (I believe there’s only one of me!)

ohn's Moose Encounter! https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 41| Dr. Matt Baker is researching a promising new drug to fight sarc at Stanford University.

Mon, 02 Aug 2021 05:00:00 -0500

Dr. Matt Baker at Stanford University is studying Sarilumab also known as KEVZARA as a treatment for sarcoidosis. Sarilumab is already approved for rheumatoid arthritis, but it's anti-inflammatory properties make it a great candidate to treat sarcoidosis as well.

In this interview, Dr. Baker explains in layman's terms how Sarilumab works in your body to keep the autoimmune process from creating inflammation, which in turn causes many of the problems people suffer with sarcoidosis.

Matt Baker's bio and info: https://profiles.stanford.edu/matthew-baker

Matt's research on Sarcoidosis: https://www.stopsarcoidosis.org/sarilumab/

John's Moose Encounter! https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 40 | Writer Rebecca Stanfel is bringing the sarcoidosis message to the masses. And, man, does she know the story.

Mon, 19 Jul 2021 05:00:00 -0500

Rebecca Stanfel has been dealing with sarcoidosis for 17 years. Not just dealing with it, but at times, barely hanging on. All of this from a once world class cyclist, wife and mother who happens to have an amazing gift for writing. Her essays on living with sarcoidosis while struggling with the pandemic have been published in the Washington Post and HuffPost.

During the pandemic, Rebecca moved away from her family for eight months -- to ensure her immune system would not be compromised by her husband and son who were not able to quarantine simply due to their daily responsibilities. Rebecca has had such a tough run with sarc, to the point she has been bed-ridden for months at a time, that she could not risk getting COVID-19. In this episode of the Sarc Fighter Podcast, Rebecca talks about her writing, her decision to move out and the years-long struggle she has faced as sarcoidosis overtook much of her body.

Washington Post Essay: https://www.washingtonpost.com/health/pandemic-requires-patience-time-will-pass/2021/04/16/a75cdeea-9631-11eb-b28d-bfa7bb5cb2a5_story.html

Huff Post Essay: https://www.huffpost.com/entry/immunocompromised-covid-vaccine-cdc_n_60b043c9e4b04ddf13ebecd6

Rebecca's Blog Chronic Town: https://chronicville.wordpress.com/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

The following is a web-generated transcript of this podcast. Please excuse grammatical and spelling errors.

John Carlin: Coming up on the Sark Fighter podcast.

Rebecca: And I couldn't get out of bed. I mean, literally, I couldn't get out of bed. I couldn't walk. There were eleven steps from the bed to the toilet, and I would fall over more than once. I broke a wrist.

John Carlin: Cyber bribs The Sark Fighter brings you FSR patient advocate and writer Rebecca Stanford, who has recently published in the Washington Post and Huffington Post.

Rebecca: I was saying to myself, I was saying to my family, I was saying to the world, my health and my life are worth enough for me to do this.

John Carlin: Rebecca's, amazing, um, perspectives. Coming up next here on the Sark Fighter podcast.

Rebecca: This is the Sark Fighter podcast living with Sarcoidosis and other rare diseases. Here's your host, John Carlin.

John Carlin: Well, hello and welcome. This is episode 41 of the Sarc Fighter podcast, brought to you in part by a grant from a tire Pharma. I do this podcast to offer my fellow Sark Fighters hope. The official Sark Fighter song is called Zombie by Mark Styer and his band, the White Hot Lizards. You can hear Mark's story, the story behind his lyrics in episode twelve, and just tell me if you listen to that song, if it doesn't kind of paint a picture of your life. I call this the Sark Fighter podcast because I'm fighting Sark. And so are you. Whether you're a caregiver, a patient or researcher, it's a place where we all can gather. People tell me they feel like they're all alone. They don't know anybody else who has Sarcastosis. They can't find treatment for Sarcoidosis or maybe effective treatment or diagnosis. And I just want to let everybody know that there is a reason for hope. We talked to fellow, uh, Sark patients. We've talked to the top researchers in the United States, especially the last couple of episodes, people from places like Yale and Stanford and Sarcodosis UK. And really, the podcast has exceeded my own expectations in terms of its, uh, reach and the accessibility of the people who are really making a difference as all of us try to find a way to get through a life with Sarcoidosis. And I just have to tell you that we, uh, do release every other Monday. And as I'm speaking today, my trusty dog, my boxer Dougal, is settled on the, uh, chair that used to be my chair, but now it's his chair here in my office and he's all curled up in the studio and Google just makes my life so much better. But then again, I am a huge pet person. Now, today, it's all about a new perspective. My guest is an outstanding writer and she has broken through to some big time publications with her message about what it's like to live with Sarcoidosis. The Delta variant notwithstanding, when we talk about the COVID pandemic, we are emerging right now with about 70% of the US population being vaccinated, give or take. And I'm speaking to you in early July of 2021. And that's the best information I have right now. So it looks like the pandemic will be ending at some point sometime soon, unless the Delta variant or some other variant comes along and people continue to get vaccinated. But man, that was a tough haul for Rebecca Stanford, who is a voice for everyone who is immunocompromised by Sarcodosis. Or perhaps maybe the treatments that we all take to keep it at Bay, to the point where she moved out of her home for eight months so she could self quarantine from her husband and teenage son. And in The Washington Post, she wrote about that a little bit, and there was so much good information in both The Washington Post and the Huff Post. But I'm just going to read you an excerpt of what she shared with the world in The Washington Post. Rebecca writes, I hated being apart from them. I hated missing some of Andrew's final months at home before going to College. I hated not being able to hug them. I hated physically backing away from my son. I hated fearing for my life. But my years with Sarcaidosis made all this feel more possible. I'd learned that romantic love and parental bonds can hold up to long stays in the hospital, and I knew a confined and boring year wouldn't kill me. I had the emotional musculature in place already. If that's not somebody telling you how bad it is, but putting a shine on it, a positive spin on it all at the same time. I don't know what is. And there's just some fantastic writing and ideas being communicated in just a couple of sentences there. And that is Rebecca. She's, um, a philosopher, all right? As a writer, she knows the value of an analogy, and she takes exception to my use and really the common use of the term Sark fighter, or even Sark warrior. She thinks that using the language of war word like battle warrior, fighter make it more difficult to deal with a chronic illness like Sarcidosis. And actually, of course, that's just the opposite of the way I feel. I named this podcast The Sark Fighter Podcast. I open every time that I upload a new episode saying, because I'm fighting Sark, and so are you. And we're all going to get through this, and we're going to take, um, it to this disease. And when I go for a long bike ride, because I've gotten through a training session weeks and weeks of training, and I get a big bike ride done. And not only do I enjoy the fact that I was out there and I was enjoying the ride, but you know what? I took one back from Sarcodosis, which is trying to take one from me. So for me, it's all about the battle. But Rebecca makes a great, uh, case for her approach. And I will tell you quickly that she, of course, has had an extremely difficult run with Sarcodosis for, I think I want to say 16 years. Correct me if I'm, uh, wrong. It's 16 or 17 years to the point that doctors actually predicted she would leave this life long ago, that she would, uh, not live to see her son grow up. And yet here she is. And actually, for the last three years, she's actually kind of had things mostly under control. And all of this language and philosophy from a woman who at one point was competing to be on the US Olympic team as a cyclist. And she was right there in the late 80s. And Rebecca, uh, and I have so much to talk about. And all of it is coming up next here on the Sark Fighter podcast. Hi, I hope you're enjoying the Shark Fighter podcast. You may be wondering, what can I do to help? How can I be a part of the Sarqua dosas solution? It's simple. Make a donation to Kicks, kick in to stop Sarcoidosis. 100% of the money goes to the foundation for Sarcoidosis Research. Look for a link in the show notes of the Sarkfighter podcast. Welcome back to the Sark Fighter podcast. And joining me now is a fellow Sark fighter, although she might disagree with that term, Rebecca Stanford, who is a fellow advocate and works with FSR, but also an, uh, excellent writer. And she's been writing about her struggle with Sarkoidosis. Rebecca, welcome to the program.

Rebecca: Thank you so much for having me, John.

John Carlin: So you've been fighting Sarcodosis for a long time. Let me put it this way. I know you object to the term fighting, and we're going to talk about that. You have been plagued with Sarcodosis for a long time.

Rebecca: I have, yes. I have been living with Sarcore dosis for 17 years. I was diagnosed in my early 30s. I had just given birth to my son, who was three months old when I was first diagnosed way back in 2004.

John Carlin: So everything was going along swimmingly. And then what happened?

Rebecca: We were moving, um, back to our home in Montana. And I developed I'm sure a lot of people have the same story. I developed a nagging cough and bronchitis that wouldn't go away. So I ended up in the urgent care facility here where I live. And, um, got a call on a Friday night when they were closing. We read your chest X ray, and it looks like you might have Lymphoma. So call an oncologist on Monday. It turned out that I had Sarcoidosis, um, not Lymphoma. And at the time, I was incredibly relieved by that. And then over the next years, the disease progressed, first to my heart, where I have an AICD implanted, liver, bones, joints, skin, and most profoundly neurological, um, and now some gastrointestinal involvement. So I think of the disease is sort of hop scotching around my body.

John Carlin: And you have not been able to keep that in check?

Rebecca: Well, for the past three years, I'm knocking on something wood here. I have been able to keep it in check. Before then. It was pretty much a horror show of having, um, an illness affect one organ and switching drugs and then breaking through or the medication is not working. And then trying a different, stronger drug, progressing to doing high dose cytoxin, which is a cancer drug, spending months in the hospital with uncontrolled pain and vertigo and episodes of blindness. And then my last hospitalization was the summer of 2018. And I don't know if medications finally kicked in or if the disease has quieted down. I mean, I still have symptoms. I still have to manage it, but it's profoundly better than it was. But before that, it was 14 years of just sort of constant going from one to the other.

John Carlin: I want to pick through that a little bit. You said episodes of blindness. Can you tell me about that?

Rebecca: Yes. What would happen, um, is in 2007, I had aseptic meningitis. I didn't know it at the time. That was how the neurosurquoid presented itself. So it was just this unbelievable pain, like, terrible pain. And then my vision would just blank out for periods of time. Thankfully, very short periods of time, but it was completely terrifying. So I'd be laying that or I'd be getting up. So, um, fortunately, that has not been a part of my life for a while.

John Carlin: Would that last for a minute or two minutes or hours or what would be.

Rebecca: No, it would be minutes.

John Carlin: Okay.

Rebecca: Yeah. Wow.

John Carlin: And so that was sarcoidosis Was it on an optic nerve or somewhere in your brain that was blocking a signal or what was it?

Rebecca: The consensus was it was on, um, the optic nerve as well as I believe it was cranial nerve number eight, if I'm remembering, which is the vestibular ocular, which is what controls your sense of balance.

John Carlin: Wow. You have had a tough run. And then the cytoxin. I went through a year of the citoxin, uh, as well. That is no picnic at all.

Rebecca: No.

John Carlin: Did it work?

Rebecca: You know, it's looking back, it is so hard to tell. I mean, at that point in my life, I think if the doctor had said, here's a bottle of Drano, it's going to allow you to be the kind of mother that you want to be. It's going to allow you to function more. I would have chugged the drain out. It's hard to tell some of those drugs. The side effects are so profound. I don't know about with you, but I was getting it every other week, so I would get this dose, and then I'd come home and I'd be sick for five days, six days, seven days. I don't know. That said, the neurologic symptoms have retreated somewhat, and I'm more functional, as I'm sure so many of your people who listen to, um, your podcast. No, I mean, sometimes it's difficult to tell with this disease, with the medications. I don't know of many people who have been put on radicate or taken cells after methyltrexate or retoxin or thalidomide or actor, uh, who take it and say miraculously, oh, I'm cured, right? I don't think that's the typical course in my understanding. I could be wrong.

John Carlin: Yeah. And, well, you never know. You never know if you're cured or if you're just in a pleasant window for the next episode. So you've been three years. I'm going on two years, um, without a flare up. And although I have permanent damage, it sounds like you have some permanent damage. So you always feel like it's there. Um, but it's much better than a flare. What are you taking right now?

Rebecca: Right now I'm taking Axar. I'm, uh, still on ten milligrams of prednisone and I have low Immunoglobulin, which allows me to get IVIG monthly. I think my insurance, um, company would fight it, but the doctor I see says that he, um, thinks that the IVIG is very good in helping with all the nerve neuropathy issues that seem to be my main problem. So those three things.

John Carlin: All right, I want to go back in your life a little bit. You were a national caliber athlete?

Rebecca: Yes. When I was a teenager, I was a bit of a biking phenomenon. I was a track cyclist. Um, we lived in Baton Rouge, Louisiana, um, several national medals. I was at the Olympic Training Center for three times and I was a contender for the 1988 Olympic team. So, yeah, that's, um, in my background. And then I picked the sport up again in one year. We lived in Montana and just had fun racing in a kind of low key way. And it's been a real joy. In the past few months, I somehow, in the pandemic, found a new bike and it's been really just wonderful. I've been riding my bike around in a mellow, low key way. Rediscovering that joy I felt when I was 16 or 17. That sense of freedom and the wind in your hair. So I really enjoying.

John Carlin: Um, that when I've talked to people who led a very active lifestyle. And let's face it, if you live in Montana, you're not there to sit on the couch and watch television.

Rebecca: Um, correct.

John Carlin: And then along comes Sarquoidosis.sarcoidos And to me, it seems like such a limiting factor for people who really want to live that active lifestyle. Has it made like that cycling or that hiking or whatever you want to do in the great outdoors and big sky countries? It made it that much more difficult for you.

Rebecca: It was devastating. So I should also say that I gained £100 on the premise zone, which I've since lost. I think being on the predominant zone and being bedridden and having no pleasures left in life except eating. But when we moved to Montana, my husband and I, our way of interacting together as a couple, uh, and as a family was to hike. So we did long hikes. You've been to Glacier National Park? We did back country hikes and glacier into the Bob Marshall Wilderness. We live with hiking trails out our back door. So after work, um, we would meet for a run. I used to run up those trails, which is unlike me now. We're blessed with Lakes close to us. So lots of kayaking in the summer, cross country skiing in the winter. And then suddenly, that was just gone. And I couldn't get out. Um, of bed. I mean, literally, I couldn't get out of bed. I couldn't walk. I counted. There were eleven steps from the bed to the toilet. And I would fall over more than once. I broke a wrist. I broke ribs. And so people would say, oh, why don't you go for pretty drives? Drive up to the top of the path and look at the view. And it's not the same when you participate in something that you love, and it's this whole body experience. And you're with a person that you love, and you have those conversations when you're walking that you don't have just sitting around the house. It was devastating. Um, and I still don't, um, think we figured out a good way a second thing to do that was just as good as that for us. So it was hard on me. It was hard on my husband. It was hard on my son to lose that capacity.

John Carlin: I believe it. So your son. I'm doing the math. Your son's got to be around 17 years old.

Rebecca: He's 17. Yeah.

John Carlin: Okay. And he likes to do the outdoor stuff now he does.

Rebecca: And I feel like part of it was as he was growing up, it was just his dad taking him out. It pains me that I did not get to teach my own son how to ride a bike or how to ski. I'm a much better skier than my husband. Um, so for a while, I think he was kind of your typical preteen glued to video games. But now he's very active. He's a hiker. He's a rock claimer. So, um, it all worked out.

John Carlin: Yeah. We went through a similar thing. I have three sons, and we went through that similar phase. So I'm not surprised.

Rebecca: Um.

John Carlin: When you said you were trying to walk from the bed to the bathroom and you would fall at that point, which part of your body was failing due to sarcudosis?

Rebecca: It was all neurological. It was all the vertigo from the cranial nerves.

John Carlin: Got it. So you couldn't. Could you not feel your feet? Could you not guide your legs? What was happening?

Rebecca: It was like living on a ship at sea in a storm that was somehow spinning around. It was the most profound dizziness I have ever felt. And later I learned that I had neuropathy in the feet and probably I wasn't picking my feet up, but at the time, it was just this dizziness that I couldn't control.

John Carlin: It was dizziness. Wow. And so that's what made you fall down. So it wasn't like your legs weren't strong enough to carry you. You just didn't have the balance.

Rebecca: Right. And at the time, we lived in a house. We had to move because of the house. It just didn't work. So the bedroom that I slept in was on the second floor, and any kind of family the kitchen and eating area was down the flight of steep stairs, and the vertigo got so bad, I would crawl down those stairs to have family dinner. I mean, I could not walk down the stairs safely.

John Carlin: That is just amazing. But now you said you found a bike in the pandemic and you have the balance to get on a bicycle and ride.

Rebecca: Yes. And right now, I'm not having tremendous vertigo issues, which is great. Um, I also picked up wild ice skating, um, this last winter. So skating on some of our Lakes was sort of the longer blade speed skates, kind of across between cross country skiing and skating. I picked that up this winter, so I feel really fortunate. What is that, like heaven? You would like it. I think if you like cycling, you have no resistance on ice, so it's a sense of flying because there's no resistance.

John Carlin: Um, but it takes a lot of Vo. Um, two Max. You got to be able to breathe as if you were running. I would think, no, you have to have strong legs.

Rebecca: Um, well, I think if you could walk, you could do it, especially if you've ever been on skates before, like hockey skates or figure skates. And with those longer blades, it really isn't a lot of Max. Uh, one push on your skate will send you meters down the ice.

John Carlin: How, uh, do you get good, clean ice without snow on it and all that kind of stuff? Does that just happen naturally?

Rebecca: Luck if there's a cold snap before we get snow or if there's a thaw and then it refreezes, um, before snow. And then in a town near us in Butte, they actually have an outdoor speed skating track that they clean. So I got to practice up there.

John Carlin: Yeah, I think that's an experience that most people, uh, just got to live far enough north to be able to do that.

Rebecca: Look for videos on YouTube. They have an aerial video of some Montana skaters on wild ice that's taken from a drone. Uh, it's amazing, but it's definitely something. You need all the safety equipment, and you need to do it with people, and you need to do it with people who know what they're doing in terms of knowing the ice.

John Carlin: Um, right. Let's talk about your writing a little bit. So you are a graduate of Berkeley. Did you major in English or what did you major in?

Rebecca: No, I majored in the tremendously employable profession of medieval women's intellectual history.

John Carlin: Of course, those firms are always hiring.

Rebecca: What it did, in my defense, is it taught me. I think I got, uh, an education where I learned how to think, and I also learned how to write. Looking back, I really wish I had studied journalism, um, because Berkeley had a great journalism program. But you can't tell a 20 year old anything, as I'm sure you know, if you have kids.

John Carlin: Yeah, well, I'm one of those people who think that you go to College to grow up and to learn how to think.

Rebecca: Me too.

John Carlin: If you happen to major in something where you can get a job in that area, so much the better. But I think that the major reason to go to College for four years is to learn how to think. And I totally agree. Get a broad education and a little bit of knowledge about a lot of things to figure out how the world works. So that's my two cent and my wife and I disagree on that, but she majored, um, in accounting. She's, um, an accountant. It, uh, just worked for her, and she's very good at it. But, um, anyway, so you started, uh, writing about Sarcoidosis, and you've been published in a couple of big publications with some op eds. Uh, tell us about the two most recent.

Rebecca: The two most recent pieces. One was in the Washington Post. I've, um, lost all sense of time. I think it was like, a couple of months ago. And then I think last month was in half post.

John Carlin: Yeah, I read both of those. And you are just so articulate. Um, when it comes to telling the Sarkodosis story, what made you think I'm going to write about Sarcodosis, and The Washington Post is going to publish it?

Rebecca: Well, a little bit of background, so I was working as a writer and a journalist when I got sick. And then, of course, I lost one. Um, of the things I lost when the disease was very active in my brain was the ability to read text and to write. I still had issues reading a book. It slowed down a lot for me, the process of reading. So I wasn't, um, able to meet deadlines. So I wasn't writing. But, um, writing has always been since I was a kid. It's been my way to engage with my reality. It's a way to make sense of things. If I sit down and I want to write in my Journal or I want to write something, it's how I process. So gosh, I think it was 2008. I started a blog called Chronic Town where I just wrote about the experience of having this illness and being apparent to a young child. And, um, that kind of led. People said, oh, this is so great. You should try to get it published. So I had a couple of personal essays published in High Country News, which is a magazine. It's about life in the west. And, um, then people said, oh, you should turn it into a book, which didn't work as a process for, um, me. And then my son is growing up and I feel like I missed a lot of time with him with illness and being sick so much in the hospital. So I sort of decided a couple of years ago, I'm not going to worry about writing right now. I'm just going to focus on being a mom and being present in his life. When he deigns to speak to me, most of the time the door is closed. But when COVID hit, my doctor was very concerned, um, and he said, you're going to either need, um, to keep your son completely locked in his bedroom and not interacting in the world, or you're going to have to live somewhere separately. Unfortunately, we have the financial resources that I could live separately. So for eight months, I moved out of the family home and moved into an apartment across town. And suddenly I had a lot of time on my hands and writing was what I turned to. And I picked it back up. And I had so many feelings about covet as someone who was, immunocompromised, living in a state where people were burning masks down the street because they felt that was too much of an infringement to wear masks to protect people like me. And I just felt like I had to write. So all these ideas started coming out and I sent them off to different, um, places. And I feel really fortunate the Post took that I need to back up.

John Carlin: Because I know that you talked about this in one of your essays, but you were so afraid because, um, you're immunocompromised immunocompromised because of the drugs and because of Sarcodosis. So you moved away from your family for eight months, basically lived like a hermit.

Rebecca: Well, I come home for dinner in the summer. We'd have dinner on the deck because that was outside. And I go for walks outside with my husband Jay and my son Andrew. And then it got difficult in the winter. So we bought these giant air filters and I would sit in the living room and 10ft away, they were at the table and we kind of shouted each other across the room. And I was very fortunate to get an early vaccine. I had got an extra dose. So, yeah, I did move.

John Carlin: Um, out and that. I mean, just the decision to do that. I'm trying to envision how I would have approached that. I would have resisted that at all costs. I guess you just felt like that was the best path.

Rebecca: Yeah. I think part of it was watching my son struggle for those eight weeks when he was locked down, struggling with anxiety and not seeing his friends and being depressed and not being able to go out. Um, looking back, do I think we could have found a solution where we all stayed together? Yes. At the time, it was so freaky. And I think I already had this instinct from all the time in the hospital that when I'm sick, I'm the one that goes away, that we just sort of slotted into that. Um, but on the other hand, in, um, a lot of ways, it was a very empowering time because I was saying to myself, I was saying to my family, I was saying to the world, my health and my life are worth enough for me to do this. Okay.

John Carlin: So you're by yourself, you have a lot of time on your hands, and you start writing and what thoughts are coming to you that are motivating you to sit down and begin this process?

Rebecca: Well, I kind of became an amateur epidemiologist because I also had a lot of time reading to read everything about covet. And I love public, uh, health issues. I think what first motivated me was rage. It, um, was really the sense of there are other people like me who are either elderly or they're immunocompromised or they have some other risk factor. And there was a segment of society that just did not seem to care whether we lived or died. And I think that was sort of the first thing about writing, about my experience, about what is it like to have an illness and to be immunocompromised with this disease. We are not some small group of other. We are your families, your friends, your neighbors, your teachers. Um, so I think that was what kind of first got me writing and then you're a journalist. I'm sure you know this once your brain gets going with ideas, then that builds on other ideas. And that's just the process for, um, me.

John Carlin: Yeah. So you put that out there so that people hopefully would get the message that, hey, there's a bunch of us out here and you should care about us, and you need to be careful. Does A, did that work or B, did at least make you feel better that you got it out there?

Rebecca: It felt a lot better to get it out there and especially to get it published in a national publication, because there was that sense that, yes, as a writer, you innately believe that you have something worth saying. But it's also great when you get that affirmation from someone saying, yeah, this is something worth other people, um, reading and from both of the publications, the overwhelming response I got from kind of online comments was positive. Other people with circuitosis, especially in the Washington Post, um, writing, just saying, thank you for I've never read anything about Sarcoidosis in a major newspaper. Thank you. Which I found really interesting, just that notion. And it's something that I felt with a blog even way back then of just that aloneness with a rare disease.

John Carlin: So you had an epiphany. Um, and I want to talk about this because the name of this podcast is the Sark Fighter Podcast. And you and I both volunteer with the foundation for Sarcodosis Research, and they are fond of calling all of us with warriors. So we have the word warrior, and we have the word fighter. And for me, it is a determination to fight back against what's restraining me. And you have come to terms with language that says, it's not biting. Tell me about that.

Rebecca: This is by saying, I think we all have different thought for how we deal with everything in our life. And what I'm saying right now, I do not mean as a judgment against you or anyone who likes to use images of war thinking about illness. It's something that was very important to my thinking about illness as well. For over a decade. As I said, I got diagnosed when Andrew was three months old. And the first thought that came into my head was, I'm going to beat this. I'm going to fight this. I'm going to live to see my son grow up. And I had doctors who told me otherwise. You know, I had an electrophysiologist. My son was 910 months old, saying, oh, you could drop dead at any moment. He would say very casually. And when Andrew was two or three, I had another doctor say, well, you're not going to live to see your son graduate from high school, but at least you know what you're going to die of. Like, a lot of people don't have that. And he offered this to me as a sort of comfort. So for me, the stakes were very high. The stakes are very high for all of us. Life is something we want to hold on to. And I think in our culture, when the stakes are high, we turn to the language of war. We have the war on drugs. We have the war on cancer. Lyndon Johnson had the war on poverty. And I think what war conveys is you're giving it everything that you've got, and it's very important. And this is something, um, that I thought this way, too, for a decade. At the time, I had a therapist. She was a little old lady who is a cancer survivor, a former beatnik. And she would tell me when I would go in, um, for my cytoxin, and she would say, I want you to visualize every molecule of that chemo going into your body as a nuclear warhead. That's going to destroy the problem that's going on.

John Carlin: This is a Beatnick telling you this.

Rebecca: Yeah, in a cancer or nerd lived with cancer. And all this time I'm fighting the disease. Right? I'm tired, but I'm going to fight to get out of bed. I'm going to fight to be with my son. I'm going to fight to make it down the stairs to dinner. I'm going to fight to watch a television show. What happens if you fight and you can't do it? How do you feel about yourself then? So one day, I was getting cytoxin, and my body reacted to it horribly. So I had to get huge doses of ibbenadryl. And I'm sitting there in my Benadryl haze, watching the stuff drip into me slowly, and I'm thinking about what my therapist had said, that this is like it's a war. I'm going to win this war. And I had this epiphany. And I think this is especially true for a disease where it's your own immune system is a component. Like, I am both the aggressor and I am the battlefield. So I'm dropping these nuclear warheads into my, um, body, and yet I am the field into which they land. And that kind of put me on this path of thinking about how do we as individuals and how do we as a society think about illness? And this is clearly not something that's unique to Sarcoidosis. If you read Most Obituaries, where someone has died of any kind of illness cancer, Alzheimer's, multiple sclerosis, covet, uh, they'll say so and so fought valiantly, and he lost his battle with blah. And I don't like the thought that you're a loser if an illness kills you. So when I was in College, in one of my, um, classes, we had to read Susan Sontag's book, Illness as a Metaphor. It's a very famous book. It's kind of a philosophy of the Illness book. And sue, the writer, had cancer, and she got very frustrated with sort of the metaphors people use to talk about illness. And for me, it just stopped working to think about it in that way. I was down on myself. I was depressed. I felt like I was a loser. I felt like I wasn't trying hard enough. Even the way that some of the doctors, if they give you a drug and it doesn't work, you fail the drug. Right. I mean, that's the language that was getting used, and it just wasn't working for me. So, I don't know, for a while, I was sort of casting around for how do we think about illnesses? And I still don't have a great answer, how to envision an illness if you're not going to use the language of war. But for me, personally, I now think of myself as living with Sarkoidosis. I don't believe that I'm ever going to get magically cured in this disease is going to just go away. Like, I think I will be living with symptoms. I'll be very happy if that happens. I'm not trying to be a Downer, um, and say it's never going to happen. But for me, I feel like I need to just take every day that I have in front of me as a gift. Every day when I'm functional, every day when I'm able to do the things that I can, then I'm living with this illness to a certain extent. I'm sharing my body with this disease. And for me, it has allowed me to get the rest that I need. It has allowed me to try to find some balance. Before this, I'm sure we've all done this. This was my pattern. It would be like I'd feel okay one day. So I would do everything I could, everything I could. And then I couldn't get out of bed for a week, and I feel horrible about myself, and I'd feel like a loser. So for me, I've kind of been on this journey. I'm, uh, still thinking about it. I'm doing research now into theories of metaphorical thinking. Why is it that we need metaphors? What purpose do they serve to think about? How do we, as individuals living with a disease and how do we, as a larger society, want to do serious and chronic illnesses?

John Carlin: Has it helped your mental health to adopt this approach that doesn't use the language of war?

Rebecca: Tremendously. It has, like I said, because I think this is part of it, too. As a former athlete, as someone that was used to thinking of my body as a tool, as something that I could push so suddenly to push and, um, wind up in the hospital, instead of pushing and winning this phase of the illness, it was profoundly depressing for me. I have found a lot of relief in that notion that I live with Sarcoidosis. I don't like Sarcoidosis right now. I'm living with Sarcoidosis, and I have to manage it. So, uh, I think of myself more like a manager of a difficult work, uh, crew. Some of who, uh, want to do their job and some of who want to run around and meet granuloman places. I don't want it to. But I'm the manager, right? And I have to learn how to function as best I can in this body now.

John Carlin: So when you get out on your bike or when you're doing the ice skating, don't you just feel a little bit like I just beat Sarcoidosis? I stole one from Sarcodosis.

Rebecca: No, I feel so lucky. I feel so fortunate to whatever it is, the drugs, to the prayers that people have sent me. From different religions to the randomness of the disease being in a process of less activity. I feel joy on the bike if I feel anything related to the disease. Sometimes I feel not angry, but just that sense. Like, 20 years ago, I could have written off this path. And now I'm just out writing for an hour, but I really try to stay grounded. What can I do today, and what can I do today that's going to allow me to do something tomorrow, right? So, sure, I'd love to go out and do intervals on my bike, but then I'll be in bed for three days. So what can I do today that will allow me to be present in my life tomorrow that will, um, allow me to function the next day, if that makes any sense.

John Carlin: Sure. I've talked to some people who, um, are on the podcast who are in that state right now, where you have been at various times, uh, where for whatever reason, whether it's pulmonary, whether it's cardiac, whether, um, it's neuro, their activities are extremely limited. So gardening for 15 um minutes is a victory. I hear that there I am using the language of winning and losing again, but I still sense that there's that determination.

Rebecca: Um, it's the determination.

John Carlin: But the journey is the destination, and you're not stopping to smell the roses along the way. The roses may be the destination.

Rebecca: Yeah. And if anyone wants to go read 4000 blog entries, this has been something I've been working on the entire 17 years, because I am a high achieving person in everything that I do. I'm very goal oriented. And so this notion that, okay, I'm going to work on an article today. I'm going to work until I'm tired. I'm not going to work until I finish it. I'm going to work until I know I've reached what I can do. I'm going to do that 15 minutes of gardening. Right? I'm not going to do my whole yard. That has been a work in progress for me, and it remains a work in progress to try to stay in the day that I'm in, not in the past. I think all of us deal with a lot of trauma from past medical experiences, and I think we all have a lot of anxiety about the future. Even if you're doing better, I'm sure you feel that sense of when is that other shoe going to drop again? And what am I going to do when it drops? And so try not to live with that, but also, um, be smart enough to have plans in place for when that happens.

John Carlin: If that happens, how do you balance that? The other shoe could drop any day. I got to go have some fun right now while I can, but at the same time thinking I don't want to have too much fun because I don't want to cause the other shoe to drop. How do you find that balance?

Rebecca: Work in progress every day is something I think I'm negotiating, I'm figuring out. I mean, two weekends ago, my husband and I have not been on a vacation, and we used to be avid travelers since the pandemic started. And he's been really busy with work. So we drove 5 hours to Standpoint, Idaho, and we stayed for a long weekend, and we went for a bike ride one day. We went for a hike the next day, and we went kayaking next day. And he knows and I know that I was going to come home and I was going to spend the next day in bed. So, I mean, there are those times where have you heard of that? I think her name is Christine Mizarondo, the writer with the spoon theory.

John Carlin: I have not.

Rebecca: Oh, well, you and your listener should go Google this. It's the spoon theory. She had a, um, different chronic illness. But it was the notion that everybody from the most healthy teenager to somebody who's debilitated with an illness, we each have a certain amount of energy. And the way she envisioned it with spoonfuls of sugar. So my son and everyone has to figure out how many spoons they have. So my son Andrew might have 50 spoons a day. I might have five. Right. And you need to figure out what's my energy capacity and how do I want to spend it. I thought it was brilliant, what you put together. And she put it forward much more articulately than I did. And it's easy to find on the Internet.

John Carlin: All right. And we'll put a link in the show notes. It's not too much different than what I looked look at. Which is, I don't play video games, but my son certainly did. And you start out as you're fighting, and you've got a lifeline up there, right? And every time the bad guy hits you, you lose a little bit more of that lifeline. And then when you lose your entire lifeline, the game is over. And so I look at it, I start every day with this lifeline, and, um, everything I do is subtracting from that just a little bit. And then at some point, it's over. I was doing yard work this weekend. I was amazed that I was being so productive. I was raking some leaves left over from last winter. And I mowed the lawn, and I washed and waxed the car. And I kept thinking, man, it's like my lifeline is just not diminishing today. And I walked in the house, and it was like, boom, I was just done. And I said to my wife and my son's coming over for dinner, I said, I need a 15 minutes nap or I'm not going to make it through the night. And I just went from full blast to asleep. But that's the same thing with the spoon thing.

Rebecca: It sounds like the same thing. Exactly. You have the same thing? Yeah.

John Carlin: Holy cow.

Rebecca: I think an advantage. It sounds like that you have and that I have is having people in your life that understand that. And that's what would break my heart. On the blog, I get comments from people with different illnesses saying, oh, my family thinks I'm a Faker. Right. They don't look sick. Right. So you just must be lazy. And so I think it's a sense of blessing, for lack of a better word, that you have a wife, and I have a husband. I have a son that understands that when I come in and say, I need to take a nap, it's not laziness.

John Carlin: Right. And as a high achieving person, you have to convince yourself it's not Laziness.

Rebecca: Oh, yeah. That's the first person you've got to convince.

John Carlin: And that is very tough. I want to ask you if you have ever asked yourself, Why me? Here you are, up until sarcadosis strikes. You are an elite athlete. I mean, you're at a training camp with Lance Armstrong.

Rebecca: Yeah, right.

John Carlin: And you're at Berkeley. So obviously you've got some academic game. You don't just walking into Berkeley. So, uh, you're smart, you're athletic, you're doing all this stuff, and all of a sudden, bang. Do you ask yourself, Why me?

Rebecca: I used to a lot. I used to constantly. I used to. And then I would go back and I would try to figure out because the current or. I don't know if it's current anymore. But at the time, the thinking was with Sarca doses, that you had a genetic predisposition to the disease. And then there was some kind of exposure that would happen, whether it was a toxin or a virus or something that would set off the disease. And I would go back and I would think, was it because I went to high school in Baton Rouge, Louisiana, and the shadow of the oil refineries was at that time that I went to flea, sprayed a yard in California instead of flee sprayed myself. So I was covered in insecticide. And I honestly think what helped me deal with that end of it was getting treatment at the cancer treatment center, where you see people from seven year olds to 97 year olds who have an illness. Why? I don't know. Why are some people born into poverty? Why are some people? I just think for me, I've had to embrace the randomness of the universe, and that spending a lot of time thinking, Poor me. Why did this happen to me? It's just not helpful for me.

John Carlin: I have to say I agree. But I also think that healthy people should be able to Dodge some of the pitfalls that not healthy people have. And you're doing everything right. And it still gets you. And to me, because I'm not as high achieving as you. But it just felt like I'm living a clean life. I'm living a good life. I'm not abusing my body, and I'm fit, and I'm running, um, marathons. And all of, um, a sudden boom. And it just seemed like I was the most unlikely person. To me, it seemed that way.

Rebecca: No, I felt that way too. But then if you spend time in any kind of illness community, you see that there's so many people like that. And you have to like, for me, I just remember for cancer and who knows what it's like with Sarca doses. Hopefully, the researchers at FSR is funding, are going to figure this out. But it's one random mutation in a cell, right? So, yeah, we're setting ourselves up for success. Eating our five servings of veggies and getting our exercise and getting a good night's sleep. But I know some people derive a lot of. And I don't mean to denigrate that when they talk about the randomness of the, um, universe. I know faith is very, uh, important for some people, and I don't mean to speak that that isn't a way to think about it for me. I don't believe that any kind of God or any kind of force made me sick for a reason. But I do think there is so much that we can learn from illness, that we can learn from hardship, that can make us better people, that can make us more compassionate and more empathetic. And that's, I think, where I try to focus on the why me? Um, I don't know, but what am I going to do with it?

John Carlin: You mentioned already that illness is a metaphor, which is a book. But you also, uh, in one of your emails to me, uh, before we began talking today, um, talked about the history and the need for a metaphor. What was that all about?

Rebecca: Well, I'm no expert on this. I'm just starting to do some reading and some research. But I'm sure, you know, when we're in elementary school and, um, high school, we learn a metaphor is a literary device that we use as a comparison. So you're busy as a Bee or you're a solid Oak tree, right? So it's this comparison. There's been a lot of research, I think, starting in the 80s, that metaphors are not just a way to compare something in a piece of writing, but that what a metaphor does is it takes an abstraction like illness, like poverty, like drug use, and it connects it with something concrete war, so that our brains actually process information and can do that higher level of abstraction by using an internal metaphor. So by comparing illness to something else, we take that abstraction and we can make sense of it, if that makes any sense. And that's part of our brains that evolved over time and that allows us to have these higher conceptual ideas.

John Carlin: We say, all right, I'm going to fight Sarcidosis, and I'm at war with Sarcidosis, and that's a way of helping us understand. But maybe we're jumping to the metaphor. That's just too easy.

Rebecca: Like I said, it's certainly a metaphor. It's certainly a way of thinking that conveys all out effort. It conveys intensity, and it conveys high stakes. And I think it's a metaphor that's floating around out there in our society. Right. We have the war on drugs. We had the war on poverty. I think it was Reagan or, I don't know, the war on cancer. Right. And I don't think it's just for people that have illness. I think it's the broader society uses these metaphors and finds comfort and finds a way to think about them as well.

John Carlin: So what's next for you? Will we see you popping up in the Washington Post again? Or HuffPost, or are you still putting stuff out there?

Rebecca: Yeah, I don't want to get put into a niche of only writing about covet and how hard it is to live with covet when you're immunocompromised. So I have an essay I'm working on about returning to the bike in middle age. Um, the joys, like I was talking about. Um, I have an essay that, um, I'm working on about just this topic about how do we, um, think about illness as a society and what are the benefits of the ways we think about it now, and what are the pitfalls of it that I'm hoping to send around with writing? It's just a process that you send, um, things out and you get rejected, and then you send them back out. So hopefully you'll see, um, me out there again soon.

John Carlin: Well, I certainly wish you all the best. And I can't tell you how much I've enjoyed this philosophical approach to Sarcoidosis and how much I appreciate you being willing to share your story with the, uh.

Rebecca: Thank you. And I'm honored to have you bond. It's such a great thing that you're doing. Thank you. Thank you for having me. Um, um, uh.

John Carlin: Remember, Rebecca is an advocate, an avid volunteer for the foundation for Sarcodosis Research, along with me and many others. But she wanted me to be sure to tell you that all of the opinions expressed are her own and not those of FSR. And I would add the same for myself as well. But can you imagine being told by your doctor you probably wouldn't live to see your son grow up? Can you imagine moving out of your home to be safe during the pandemic? I've heard of people kind of staying in their rooms or keeping distant or wearing masks. But moving out of your home on your doctor's orders, that had to be so difficult. And then think of the loss that she, uh, must have felt going from a world class athlete to bedridden. And then, as she writes in some of her essays, missing years of her life dealing with Sarcudosis. And then she just talked a little bit about how Sarcoidosis prepared her for the difficulty of the Pandemic. So, yes, she was more at risk, but she also already kind of knew how to deal with this kind of difficulty. And then what do you make of her argument that we're not fighting Sarcudosis. We are not warriors. We are simply living with our bodies, which happened to have a flaw for an unknown reason. And she can chalk it up to the randomness of the universe. I'd really like to see some comments on this, and I think it's a wonderful perspective. It's not my perspective. I feel like I have to battle it. I feel like everything I do is in some way trying to get ahead of whatever Sarcodosis wants to do to me. In my thinking, that's a battle. But I'm not saying she's, uh, wrong, and I really appreciate her perspective. It's a new way to think about, um, it. And I just want to know what you think. So if you want to leave me a comment on it, and if I get a bunch of comments, I'll be sharing them in future Sarkfighter podcast. And then, of course, we want to thank Rebecca for all her work with the foundation, uh, for Sarcodosis research, and for her ability to so eloquently spread the word to the rest of the world about Sarcoidosis and for her continuing to do so. Now, if you're new to Sarcodosis, trying to figure out what you have, what's going on in your body, go back and listen to episode two. My interview with Dr. Simon Hart, and he basically goes over Sarcoidosis 101, tells you everything about Sarcodosis, the best that we know about what's causing it, why there's no cure, what's happening to your body, why it can invade any part of your body. All of that is back in episode two. And if you want to know more about me and my backstory, it's in episode one. I'll tell you. A recent release is an interview with Leo Casimo, who heads up Sarcodosis UK. And if you're listening in the UK, I'm so happy to have you aboard. But if you're looking for answers about what's going on in the UK, check out episode um, 38. And then I'm just coming off two episodes featuring some of the top Sarcoidosis researchers in the world. And if you are looking for hope, check out episodes 39 and 40 with Dr. William Damski of Yale University and Dr. Matt Baker of Stanford both making promising inroads and studies of new ways to beat the effects of Sarcodosis, creating medicines and treatments that, if they get all the way through, could be on label and specifically targeting Sarcodosis, which, as I speak right now, almost every drug that anybody takes for Sarcodoses, even the common ones like methatrexate, are off label. In other words, they're not drugs that were developed specifically for Sarcoidosis. And everybody knows that when you get to some of the more expensive drugs, the insurance companies throw up as many walls as they can. They don't approve it until your doctor writes numerous appeals. And then, uh, you get the medicine typically. Usually. Although I just talked with somebody who's been on the podcast recently who needs Remicade, and, uh, his insurance company change. And now he's going four months, um, without Remicade, because his, um, insurance company, his new insurance company won't approve it because it's what they refer to as being off label. So the fact that Doctors Baker and Damsky are making progress, as well as ATAR and some other companies that we've, um, talked about, are, uh, making progress with Sarca dosage, specific treatments, which will be, quote, unquote, on label if they're all approved, is just amazing. So you're going to want to go back and listen to those and I will say that all these doctors, even though their expertise is, uh, beyond this world, they did a great job of keeping the conversation in layman's terms and I think you want to go back and listen to those please. Also don't forget to go back and listen to the bonus episodes um, on Sarcoidosis and COVID and also a special, um, one on Sarcodosis and prednisone and just how hazardous it is to take prednisone even though it is the very first thing that doctors recommend, it is still the best treatment for Sarcoidosis for the short term. But anyway, there was a whole town hall on that and I moderated those that those are back there so those are listed as, um, bonus episodes and their opportunities. All the right people came together in the room at one time and you can figure out what's going on with that. Also, if you ever want to send me an email, it's in the show, notes Carlinagency at um@gmail.com, you can follow the Sarkfighter with the word the in front of it on Instagram and also Sarkfighter on Facebook. I have a Facebook page and I post updates, uh, and hopefully some interesting insights, things like Rebecca's op eds. I have links to those in there and have done that over time. I appreciate your interest in the SARC Fighter podcast. It just helps, uh, me reach more people and grow the show and if you would share it on your social media, it's much appreciated. And if you like the podcast, please tell just one person and if you would like give the show a nice review on Apple podcasts. Thanks again to Rebecca Stanfield for joining me here today and for sharing her insight and her perspective. And let's hope that she continues to write and to share the message and spread the message of what we're all dealing with with Sarcoidosis. Until next time, keep fighting.

Episode 39 | Dr. William Damsky may be on the verge of a sarcoidosis breakthrough.

Mon, 05 Jul 2021 05:00:00 -0500

Dr. William Damsky, MD, Ph.D., is a leading researcher at Yale University. He is pioneering a study using the off label drug, Xeljanz (say:ZEL-janz) to fight sarcoidosis of the skin, with so far - great success. Damsky and his team have been able to make disfiguring cases of dermatological sarcoidosis disappear in a handful of cases. They are now moving ahead with a more robust clinical trial to see just how promising this treatment may be -- perhaps for sarcoidosis in other parts of the body as well.

In this Episode of the Sarc Fighter podcast, Dr. Damsky explains in easy to understand terms how this drug works within the body to block the autoimmune response behind sarcoidosis.

William Damsky MD, PhD Bio https://medicine.yale.edu/profile/william_damsky/?tab=bio

Xeljanz https://www.xeljanz.com/

Background on the study at Yale School of Medicine https://medicine.yale.edu/news-article/yale-experts-treat-severe-disfiguring-sarcoidosis-with-novel-therapy/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Episode 38 | Sarcoidosis is world wide. How they fight it in the UK

Mon, 21 Jun 2021 05:00:00 -0500

Sarcoidosis UK is doing its best to fight sarc in the United Kingdom. The organization is small but mighty and looking to grow its influence as it raises awareness about the disease and reaches out to patients to offer them help in a confusing sarcoidosis world.

In Episode 38 of the Sarc Figher podcast, Leo Casimo, Senior Executive, joins in from London to talk about the efforts of Sarcoidosis UK , and how patients there are coping with the disease while tryng to help one another and raise awareness for research.

Here's a link to Juliet's fundraiser and story: https://www.justgiving.com/fundraising/julietcoffer

Sarcoidosis UK https://www.sarcoidosisuk.org/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Charlton's blogs https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/

My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940

The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/

Just so you know I am not affiliated with any of these companies in any way. I talked about these products in the podcast so I'm sharing my information with you. I buy them on line or in the store and pay full price!

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 37 | Sarc Fighter Charlton Harris is having a hard time breathing. A REALLY hard time.

Mon, 07 Jun 2021 05:00:00 -0500

Charlton Harris is a strong voice for Sarcoidosis patients, thanks to his blog, No Tears for Sarcoidosis. And he knows the Sarc story first hand, as the disease has severely damaged his lungs to the point he needs to stay on oxygen much of the time, and a long walk is a hard day. Despite all that, Charlton perseveres and continues his work as a professional video editor and producer.

In this episode of the Sarc Fighter podcast we meet the man behind the blog and learn about his personal struggle with sarcoidosis.

Want to read all of Charlton's blogs? https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/

Sarcoidosis News https://sarcoidosisnews.com/

My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940

The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/

Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up.

I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison."

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Bonus Episode | Sarcoidosis and COVID-19 Presented by the Foundation for Sarcoidosis Research

Mon, 31 May 2021 05:00:00 -0500

With vaccines for COVID-19 now available, Sarcoidosis Warriors are rightfully concerned about how the vaccines might impact them. Will they interact negatively with my condition or my medications? Can the vaccine trigger a flare? Will the vaccine work if I'm immune suppressed?

Sarc Fighter Podcast Host John Carlin interviews two leading doctors to get answers to your questions. Dr. Peter Sporn, the Director of the Northwestern University Sarcoidosis Center of Excellence and Dr. Wonder Drake of Vanderbilt University School of Medicine answer all of your questions and concerns.

Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up.

I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison."

Listen to the Town Hall: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 36 | Sarc Fighter Janet Mockovciak is giving it her all.

Mon, 24 May 2021 05:00:00 -0500

Janet Mockovciak is in her 60's but she may have been fighting Sarcoidosis since she was a teenager! Janet has been an active outdoor person having traveled to Africa to follow gorillas, and Patagonia where she participated in all kinds of outdoor adventures. She will talk about how sarcoidosis has forced her to curtail her explorations -- and made her adopt a new normal. But she isn't giving up! At the end of the recent ski season, she took to the slopes with an oxygen tank in her backpack. Go Janet!

Janet is a fellow member of the Patient Advisory Council for the Foundation for Sarcoidosis research. As such she is helping to bring the patient voice to the Foundation to help ensure that our voice as patients is heard and acted upon by those on the front lines of fighting the disease.

Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up.

I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison."

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 35 | Nadia Silvera may need a double lung transplant. Thanks sarcoidosis.

Mon, 10 May 2021 05:00:00 -0500

Nadia Silvera may need a double lung transplant because of sarcoidosis. Nadia reached out to the Sarc fighter podcast after hearing some of the stories you are telling. Lioke many people she limped along with Sarcoidosis for years, not realizing how truly serious it might be. Now she is staring down the face of a serious procedure that may save her life, but will change it forever. Listen as she tells the story of not wanting to deal with the side effects of the drugs, while not knowing that sarc was slowly taking over her lungs.

Also I will update you on the elimination diet and my recent bout with a tumor in my bladder.

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-and-foundation-sarcoidosis-research-announce-town

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Bonus Episode | Sarcoidosis Town Hall: Is Prednisone "Poison?" presented by the Foundation for Sarcoidosis Research

Mon, 03 May 2021 11:16:11 -0500

As part of Sarcoidosis Awareness month, the Foundation for Sarcoidosis Research asked me to host a Town Hall meeting on the topic of prednisone with a panel that included Jessica Reid, a fellow sarc fighter, who has faced years of treatment with prednisone, Dr. Elliott Couser Chair of FSR's Scientific Advisory Board, and Dr. Sanjay Shukla CEO of aTyr Pharma which is working on a steroid-sparing drug that may offer relief for patients so they do not have to endure the terrible side effects from prednisone.

FSR asked me to host the event, which I gladly did after suffering from two years of prednisone therapy.

Here is the news release on the event.

Watch the Predisone Town Hall on You Tube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 34 Lindsey Norenberg on how to eat to beat inflammation.

Mon, 26 Apr 2021 05:00:00 -0500

Sarcoidosis at some level, is inflammation in our bodies -- where we don't want it and where it can cause permanent damage to our organs. One theory in fighting it, is to eat healthy foods i.e. those foods like sugar, grains and dairy that are known to cause inflammation. Lindsey Norenberg watched her husband struggle with cardiac sarcoidosis, and she decided to change careers after seeing the healing effects of proper eating. In this epidose of the Sarc Fighter podcast, Lindsey talks about how she helped her husband, and is helping me to find a path to better eating. Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

Panel discussion on steroids and sarcoidosis to be held on Tuesday, April 27 at 12:00pm ET / 9:00am PT

SAN DIEGO, April 20, 2021 (GLOBE NEWSWIRE) -- aTyr Pharma, Inc. (Nasdaq: LIFE), a biotherapeutics company engaged in the discovery and development of innovative medicines based on novel biological pathways, and the Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, today announced that they will hold a Virtual Town Hall on Steroids and Sarcoidosis to discuss treatment options and strategies for patients living with sarcoidosis. The event will be held on Tuesday, April 27, 2021 at 12:00pm ET / 9:00am PT.

The Town Hall discussion will feature a panel of leading experts related to sarcoidosis treatment and advocacy, including:

John Carlin (Moderator) – Host, Sarc Fighter Podcast, FSR Patient Advocate and member of FSR’s Patient Advisory Committee
Jessica Reid, RN, FNP – FSR Patient Navigator for Sarcoidosis
Elliott Crouser, MD – Professor of Pulmonology, Critical Care and Sleep Medicine, The Ohio State University and Chair of the FSR Scientific Advisory Board
Sanjay S. Shukla, MD, MS – President and CEO, aTyr Pharma

Registration is open to anyone who wishes to attend. For more information and to register, please visit FSR’s website at https://www.stopsarcoidosis.org/steroids-and-sarcoidosis-town-hall-meeting/. Following the event, a replay will be available on the aTyr website at www.atyrpharma.com.

“We look forward to participating in this important discussion with FSR and other leading experts regarding current treatments for sarcoidosis and the need for new therapeutic options with increased efficacy and reduced side effects for this chronic, debilitating disease,” said Sanjay S. Shukla, M.D., M.S., President and Chief Executive Officer of aTyr. “While corticosteroids are a treatment option for many sarcoidosis patients, they have limited efficacy and may have serious side effects when used long-term. ATYR1923 offers a potential new mechanism to resolve lung inflammation associated with pulmonary sarcoidosis, a form of sarcoidosis in the lungs, and may be a potential alternative to steroid treatment that can improve patient outcomes with reduced toxicity.”

“We are pleased to collaborate with aTyr for this important event on steroids and sarcoidosis,” said Mary McGowan, CEO of FSR. “The mission of FSR is to support patients through research and education, so it’s especially timely to have this discussion during Sarcoidosis Awareness Month as part of our ongoing efforts to discover possible treatments.”

Sarcoidosis is an inflammatory disease characterized by the formation of granulomas, clumps of inflammatory cells, in one or more organs in the body. Sarcoidosis in the lungs is called pulmonary sarcoidosis and occurs in more than 90% of all sarcoidosis patients. Pulmonary sarcoidosis is a major form of interstitial lung disease, a group of immune-mediated disorders which can cause progressive fibrosis, or scarring, of lung tissue. Approximately 150,000 to 200,000 Americans live with pulmonary sarcoidosis. The prognosis for patients with pulmonary sarcoidosis ranges from benign and self-limiting to chronic, debilitating disease, permanent loss of lung function and death. Current treatment options include corticosteroids and other immunosuppressive therapies, which have limited efficacy and are associated with serious side effects when used long-term that many patients cannot tolerate.

About ATYR1923

aTyr is developing ATYR1923 as a potential therapeutic for patients with inflammatory lung diseases. ATYR1923, a fusion protein comprised of the immuno-modulatory domain of histidyl tRNA synthetase fused to the FC region of a human antibody, is a selective modulator of Neuropilin-2 that downregulates the innate and adaptive immune response in inflammatory disease states. aTyr recently completed enrollment in a proof-of-concept Phase 1b/2a trial evaluating ATYR1923 in patients with pulmonary sarcoidosis. This Phase 1b/2a study is a multi-ascending dose, placebo-controlled, first-in-patient study of ATYR1923 that has been designed to evaluate the safety, tolerability, steroid sparing effect, immunogenicity and pharmacokinetic profile of multiple doses of ATYR1923. In response to the COVID-19 pandemic, aTyr completed a Phase 2 clinical trial with ATYR1923 in COVID-19 patients with severe respiratory complications. This Phase 2 study was a randomized, double blind, placebo-controlled study that was designed to evaluate the safety and preliminary efficacy of a single dose of ATYR1923.

About aTyr

aTyr is a biotherapeutics company engaged in the discovery and development of innovative medicines based on novel biological pathways. aTyr’s research and development efforts are concentrated on a newly discovered area of biology, the extracellular functionality and signaling pathways of tRNA synthetases. aTyr has built a global intellectual property estate directed to a potential pipeline of protein compositions derived from 20 tRNA synthetase genes and their extracellular targets. aTyr’s primary focus is ATYR1923, a clinical-stage product candidate which binds to the Neuropilin-2 receptor and is designed to down-regulate immune engagement in inflammatory lung diseases. For more information, please visit http://www.atyrpharma.com.

About the Foundation for Sarcoidosis Research (FSR)

Established in 2000, The Foundation for Sarcoidosis Research (FSR) is the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients. Since inception, FSR has fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. For more information, please visit www.stopsarcoidosis.org.

Forward-Looking Statements

This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. Forward-looking statements are usually identified by the use of words such as “anticipates,” “believes,” “estimates,” “expects,” “intends,” “may,” “plans,” “projects,” “seeks,” “should,” “will,” and variations of such words or similar expressions. We intend these forward-looking statements to be covered by such safe harbor provisions for forward-looking statements and are making this statement for purposes of complying with those safe harbor provisions. These forward-looking statements include statements regarding potential therapeutic benefits and applications of ATYR1923; timelines and plans with respect to certain development activities (such as the timing of data from clinical trials); and certain development goals. These forward-looking statements also reflect our current views about our plans, intentions, expectations, strategies and prospects, which are based on the information currently available to us and on assumptions we have made. Although we believe that our plans, intentions, expectations, strategies and prospects, as reflected in or suggested by these forward-looking statements, are reasonable, we can give no assurance that the plans, intentions, expectations or strategies will be attained or achieved. All forward-looking statements are based on estimates and assumptions by our management that, although we believe to be reasonable, are inherently uncertain. Furthermore, actual results may differ materially from those described in these forward-looking statements and will be affected by a variety of risks and factors that are beyond our control including, without limitation, uncertainty regarding the COVID-19 pandemic, risks associated with the discovery, development and regulation of our product candidates, the risk that we or our partners may cease or delay preclinical or clinical development activities for any of our existing or future product candidates for a variety of reasons (including difficulties or delays in patient enrollment in planned clinical trials), the possibility that existing collaborations could be terminated early, and the risk that we may not be able to raise the additional funding required for our business and product development plans, as well as those risks set forth in our most recent Annual Report on Form 10-K, Quarterly Reports on Form 10-Q and in our other SEC filings. Except as required by law, we assume no obligation to update publicly any forward-looking statements, whether as a result of new information, future events or otherwise.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Source: aTyr Pharma, Inc.

Episode 33 | John Riffs on an encounter with a Doc who is not Sarc Aware!

Mon, 12 Apr 2021 16:11:59 -0500

As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis... And how this might have an impact on my own diagnosis with a new medical problem. I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month!

FSR's fantastic page that includes the media tool kit! https://www.stopsarcoidosis.org/awareness/

April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April
April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.

Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 32 | April is Sarcoidosis Awareness month! Tricha Shivas tells us how to fight back!

Mon, 05 Apr 2021 05:00:00 -0500

April is the month we all re-double our efforts to let the world know we are here. To tell the world that sarcoidosis exists, that it's a problem. That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways. Defense number one for this disease is the Foundation for Sarcoidosis Research. In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help! FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fighter Podcast to talk about the many, many events taking place in April to help spread awareness of Srcoidosis.

Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities!

April’s Sarcoidosis Awareness Month Events

April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April
April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.

Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 31 | Susan Bassi's Life slowed to a crawl when Sarcoidosis made its appearance.

Mon, 29 Mar 2021 05:00:00 -0500

Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles. Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys.

Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease. And she brings special insight to the task because she is living it. Listen in as she talks about how sarc showed up in her joints and just kept spreading.

Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities!

April’s Sarcoidosis Awareness Month Events

April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April
April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.

Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 30 Kevin McDevitt's sarcoidosis spread from his finger ... to his heart!

Mon, 15 Mar 2021 05:00:00 -0500

For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition. In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly. Yet he is fighting back and 2021 promises to be much better for him than 2020.

Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and an adjustment to his diet and lifestyle. In this podcast Keven shares the details of his harrowing battle with sarcoidosis and all he is doing to get his body and his life back under control.

Also in this episode, I'll tell you about my attempt at the Elimination Diet. As of this recording, I am 2/3 of the way through the 3 week diet that forbids sugar, dairy and grains. Plus a bunch of other stuff. I am doing this under the guidance of Lindsey Norenberg, of Nourish by Lindsey -- whose husband, Ryan joined me on Episode 27 to talk about how he is fighting the inflammation in his body through the use of an anti-inflammatory diet as well as CBD oil. I hope you enjoy my update and continue to follow along with my progress as I slowly begin to add foods back to see what might trigger an inflammatory response!

Here are links mentioned in the podcast, beginning with those from Kevin.

Parasarcoisosis::

https://www.stopsarcoidosis.org/what-is-sarcoidosis/complications/ Wahls Protocol: https://terrywahls.com/ https://www.youtube.com/watch?v=KLjgBLwH3Wc Yoga Nidra: https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q https://allyboothroyd.com/ Dave Asprey/Bulletproof Coffee https://www.bulletproof.com/recipes/bulletproof-diet-recipes/bulletproof-coffee-recipe/ Viome: https://my.viome.com/login Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.healthline.com/nutrition/elimination-diet

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Background on Elimination Diet: https://www.healthline.com/nutrition/elimination-diet

Episode 29 Susie Torres fights for diagnosis as she battles Sarc and other illnessess. And - I explore the anti-inflammatory Elimination Diet

Mon, 01 Mar 2021 05:00:00 -0500

In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her. Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital.

Note: I first met and interviewed Susie in early 2020 -- pre-pandemic. Susie writes that since we did the interview she has had gastric bypass surgery and lost 100 lbs! She also writes that her sarcoidosis is in remission, but she is still battling another rare disease -- possibly Sjogren’s Syndrome (SHOW-grins), which is is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.

Utah Sarcoidosis Support https://www.facebook.com/groups/2028388207424165/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Meet Lindsey Norenberg https://www.nourishbylindsey.com/about

Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451

Just Thrive Probiotics https://justthrivehealth.com/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 28 Sarc Fighter Andrena Johnson is making a Sacroidosis Documentary

Mon, 15 Feb 2021 05:00:00 -0500

Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness. Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis. Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget. But thanks to friends in high places in the industry, she was able to get it on Prime Video where people began watching it. Before long she realized she needed to make a big time, full length documentary about sarcoidosis. In this episode of the Sarc Fighter podcast, Andrena details her own journey with sarc as well as her acting career and how she started her current documentary project.

Andrena on IMDB https://www.imdb.com/name/nm4315892/bio?ref_=nm_ov_bio_sm

Project Purple Facebook page https://www.facebook.com/Sarcoidawarenessfilm/

Andrena in Coffin https://www.imdb.com/title/tt1667416/fullcredits?ref_=tt_cl_sm#cast

Andrena's production company on FB https://www.facebook.com/ascreativeproduction/

Surviving Sarcoidosis mini-documentary https://www.amazon.com/Surviving-Sarcoidosis-Deborah-Rice/dp/B082DR6N88

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://pubmed.ncbi.nlm.nih.gov/12442909/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 27 Diet and CBD - Can they be effective? Ryan Norenberg offers proof.

Mon, 01 Feb 2021 05:00:00 -0500

Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet. Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease. There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others. For many people, these are only marginally effective.

So you ask yourself, "What if I just ate better?" or "Should I avoid certain foods?"

Ryan says yes. In fact his wife is now a certified Holistic Nutritionist.

In addition, Ryan has turned to a newer alternative - CBD oil. In this podcast, he explains how he uses this over-the-counter therapy to reduce inflammation.

Give the podcast a listen and see if there isn't an opportunity for you to make some lifestyle adjustments, that could improve your situation.

Additional notes from Ryan!

Lindsey Norenberg's Website https://realmofcaring.org/

Here are a couple related to the Omega6/3 topic:

This is an abstract to a research document that one would need to pay for but you can get the idea of it in the abstract provided.

https://www.healthline.com/nutrition/optimize-omega-6-omega-3-ratio

This is a good one I found geared more towards the layman. It explains the importance while providing some specific information about different foods and sources of omega 6’s and 3’s.

As it is with CBD, it is important to get fish oil from a reliable source. As it is unregulated, there is a potential of high mercury content. Additionally, it is recommended to consume in a true liquid oil form that is stored and shipped at cooled temperatures vs capsules that have been on a store or warehouse shelf for unknown time at unknown temperatures. I currently use Nordic Naturals Ultimate Omega liquid available on Amazon and shipped with a cold pack. I take 2800 mg/daily (1 teaspoon).

The probiotic I take is Ther Biotic complete. This one has 12 strains of bacteria.

Here are some related to cannabinoid therapy:

Cannabinoids-as-novel-anti-inflammatory-drugs.pdf

This one focuses more on THC than CBD specifically but provides a good overview of our endocannabinoid system and how it works.

https://realmofcaring.org/roc-research/research-library/?_sft_condition_=inflammation&_sfm_publication_year=1972+2022

Here is a group related to inflammation

Research Library - Realm of Caring Foundation

Here is a group of research articles related to cannabinoids and their impact on immune function.

https://store.healthylivingshop.com/

Here is a link to the Cleveland Clinic Healthy Living Shop. The supplements on this site have been vetted by the CC and they consider trustworthy and reliable. However, that doesn’t mean that there are not other good options out there but the buyer needs to beware.

https://www.charlottesweb.com/

This is my trusted source of CBD. There are several other good ones out there as well. They offer different types (gummies, oil, lotions…) and different ratios of CBD/THC ranging from 100% CBD isolate to full plant extract containing up to the .03% federal limit on THC content.

R44742.pdf

Here is an article I found describing the legislation that established the hemp laws.

Ryan also advises:

.03% THC adds up and is not completely negligible in its effects at higher doses. The Realm of Caring can offer some support here as well. If you do decide to try CBD, I recommend you read up on the “entourage effect”. You can find some articles on the Realm of Caring Research Library page. Basically, studies are limited but there is evidence to believe that CBD is more effective in the presence of THC and other cannabinoids vs isolated by itself.

Charlotte’s Web offers discounted pricing if you register with them and offers further discounts if you subscribe to recurring deliveries. I have found the subscription to be the most cost-effective way to get it.

Episode 26 Amy Cobb is a Nurse Practitioner treating COVID Patients - And Fighting Sarcoidosis in Her Own Body.

Mon, 18 Jan 2021 05:00:00 -0500

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life. Amy is a mother of three who works full time as a nurse practitioner. Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19. In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical professional.

More on the Sarcoidosis Documentary from Mission Purple. https://www.facebook.com/Sarcoidawarenessfilm/

Atyr Pharma News Release https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-completion-enrollment-phase-1b2a-clinical

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 25 Tracy Bawtinheimer was a world traveling executive until...

Mon, 04 Jan 2021 05:00:00 -0500

In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes. At one point doctors told her she had a one percent chance of survival. Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 24 Sarc Fighter Frank Rivera fights long Covid-19

Mon, 28 Dec 2020 13:40:22 -0500

Frank Rivera is one of the loudest voices in the Sarcoidosis community. But COVID-19 didn't care. It hit him with a vengeance, then it came back.

In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID" because it just doesn't go away.

Despite his condition, Frank continues to work as a volunteer, helping other sarc patients. In fact, he recently formed a new outreach group called strongerthansarcoidosis.org to help make it easier for people to get answers about doctors, medications and navigating the tangles mess that is too often between sarc patients and the care they need and deserve.

Stronger than Sarcoidosis https://strongerthansarcoidosis.org/

Frank's Blog https://lifeasararepatient.blog/?fbclid=IwAR0YpnPmGOgXX6GKxG9SHwetjuye8G4cJCbErhV1yxHSBPf7cLukJSg4k2o

Frank on Facebook https://www.facebook.com/fjr311

Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/

The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 23 Even doctors can get sarcoidosis. Taufiq Ahmad shares the story of his decline.

Mon, 07 Dec 2020 05:00:00 -0500

Dr. Taufiq Ahmad lives a quiet life in the UK. But slowly he felt that normal activities were wearing him out.

In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch. Even though he is a physician -- Sarcoidosis was not one of the causes on his radar.

Ultimately, however it was determined that #sarcoidosis had badly damaged his heart.

Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/

The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 22 Meet Mary McGowan the new CEO of the Foundation for Sarcoidosis Research

Mon, 16 Nov 2020 14:12:11 -0500

In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research.

More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.linkedin.com/in/oziomachioma/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 21 Why Sarc is more prevalent in women with Ozioma Chioma PhD

Mon, 09 Nov 2020 04:00:00 -0500

Ozioma Chioma is a postdoctoral fellow at Vanderbilt University. A microbiologist, she is putting her skills to work thanks to a grant from the Foundation for Sarcoidosis Research. Ozi - as she is often called, is looking specifically for a link between hormones in women and sarcoidosis. Her preliminary findings indicate there is such a link. This could lead to a cure or at least a better treatment down the road.

Dr. Chioma will talk about her research, how far they have come and what's next.

More on Dr. Chioma https://medicine.vumc.org/person/ozioma-chioma-phd

Also in this podcast, I give you the rundown for the November FSR Summit that will be held virtually this year on November 14. I will be moderating a patient panel discussion that day! Hope to see you there. Whether it's self care, dealing with COVID fears, or trying to eat better -- or meeting other Sarc Fighters there are many reasons to attend.

Check out the summit agenda here: https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 20 Mark Landiak was hiking the Grand Canyon, when ...

Mon, 26 Oct 2020 06:00:00 -0500

Cardiac Sarc Fighter Mark Landiak has had a tough run of it. One day he is feeling great, getting some fresh air with his daughter on a hike most people would never undertake. The next, he isn't sure what's wrong -- but it's not good. In Episode 20 of the Sarc Fighter Podcast, Mark talks about his struggles to get through that day and how it cot worse after that. But not to be held down, Mark has written a book on how he fought sarcoidosis and how you can too. He's also a mega-fundraiser for the Foundation for Sarcoidosis Research.

Mark's Website: https://gettingbetterwithmark.com/

A quick look at Mark's story: https://gettingbetterwithmark.com/story/

Mark's Blog: https://gettingbetterwithmark.com/coping-with-sarcoidosis/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 19 Desiree was a cover girl for health ... until.

Mon, 12 Oct 2020 06:00:00 -0500

Desiree West-McCarty was young, beautiful and healthy. So much so that she was on the cover of a magazine with the caption "A picture of Health." Then she started getting headaches. "I was on the beach in Hawaii, and it hurt so bad I cried," Desiree said. Over time she would come to learn that she had neurosarcoidosis in her brain. In Episode 19 of the Sarc Fighter podcast, Desiree details her story, of how things went from headaches to the hospital and more.

After we recorded the podcast Desiree emailed the following about prednisone...

Shortly after our conversation, I remembered a fact that I had forgotten: I said that at the time of my stroke, I was just taking CellCept, but I forgot that I was also tapering off prednisone at the time. I think I was down to 20 mg/ day. A theory is that the prednisone taper was too fast and that could be what triggered the stroke. After the stroke, they upped my prednisone dosage to 80 mg/day again and did a slow taper over the course of about 9 months. I loathed prednisone, but it helped me in so many ways, too. I definitely have a love-hate relationship with it.

Meet Mary McGowan -- the new CEO for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/fsr-announces-new-ceo/

Sample agenda for November Summit https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 18 Want to Feel Better? Mindy Buchanan talks today about the November FSR Summit and how it will help.

Mon, 28 Sep 2020 08:56:35 -0500

Mindy Buchanan is the Patient Engagement Manager for the Foundation for Sarcoidosis Research. In this episode, she talks about the success of the September virtual summit and how you can participate in the upcoming sarc summit in November.

As you may know, in a typical year, Sarcoidosis Warriors (Sarc Fighters!) have the chance to travel to cities across the United States to attend meetings, listen to speakers and meet one another -- All in an effort to become more familiar with the Sarc struggle. This year, thanks to COVID-19, the summits have become virtual. FSR has worked so hard, to make it so that we can all continue our respective battles with the most support possible!

More info on the November Summit and how to sign up: https://www.stopsarcoidosis.org/patient-summits/

Meet Mindy! https://www.stopsarcoidosis.org/about/staff/

Sarc and Pregnancy, a new study. https://sarcoidosisnews.com/2020/09/10/sarcoidosis-linked-higher-risk-some-pregnancy-complications-swedish-study-shows/

Sarc Merch from FSR https://www.stopsarcoidosis.org/fsr-sarc-store/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 17 aTyr Pharma CEO Sanjay Shukla talks about how a new drug could be the answer for many sarc fighters!

Mon, 14 Sep 2020 20:49:18 -0500

aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs. aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with.

The drug, called aTyr1923 is in the second stage of clinical trials. It has shown great promise in mice, but the results in humans are still undetermined. Why is aTyr willing to take on such an expensive and risky undertaking? How do you try to cure a disease that has no known cause? And why focus all your efforts on a relatively small number of potential patients? I asked Sanjay all those questions, and he had some enlightening answers!

More about aTyr https://www.atyrpharma.com/about-life/overview/

Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/

Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 16 Mary Morlino Fights Back After Sarc Knocks Her Down!

Mon, 31 Aug 2020 06:00:00 -0500

Mary Morlino was living a good life. Skiing in Europe. Tennis. She was an aerobics instructor. Then one day she became very sick and it would be years before doctors could diagnose the culprit. Sarc. In Episode 16 Mary shares her story about how she has bounced back and is taking the fight to Sarcoidosis and other rare diseases by working for the #EveryLife Foundation.

Listen in as Mary takes you step-by-step through her battle with sarc -- including the time she suffered cardiac arrest in her kitchen!

You will want to learn more about the EveryLife Foundation, so here are some links.

Main Website - https://everylifefoundation.org/
Follow us on social media @everylifeorg
Stay up to date on how to get involved in advocacy by signing up for our monthly newsletter at www.RareReport.org
To nominate someone for the Rare Voice Awards – (Nominations close September 8th, 2020). https://rareadvocates.org/rarevoice-awards/
To submit to the Rare Artist program (Submission Deadline October 1st on Facebook) - https://www.rareartist.org/

If you want to participate in the survey to see how sarcoidosis patients are fairing with COVI-19. Click here: https://www.research.net/r/FSRSARC

Do you like "Zombie" the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on YouTube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 15 Reg Alexander Needed a New Heart

Mon, 17 Aug 2020 06:00:00 -0500

Reginald Alexander knew there was something terribly wrong with his heart. But neither he nor his doctors could figure out what it was. Meanwhile, things got worse and worse. Eventually he passed out in a public place and might have died, had he not fallen next to a doctor and a nurse! Eventually they learned that it was sarc -- and that Reg would need a new heart. In Episode 15 Reg recounts the story of the slow decline of his condition until suddenly it was almost too late.

Follow his challenge here on his Facebook Group. https://www.facebook.com/groups/RegHealthJourney/about

Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.instagram.com/5000miles.us/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 14 Barbara Mouradian Fights a two front battle with Sarc and still swims with sharks!

Mon, 03 Aug 2020 06:00:00 -0500

Barbara Mouradian and her husband Dan are amazing people. She is fighting sarc in her lungs and her heart, while Dan is raising money by riding his bike thousands of miles. They have a family and busy lives, yet Sarc rears its head several times a year to interrupt their plans. In fact, Barbara never knows when she will have a good day, or when she will need to just stay in bed. Despite it all, they are upbeat and energetic! As to the part about the sharks -- Well, you'll just have to listen. :)

Here are some links to Dan's fundraising efforts. Please consider helping him to help the cause!

https://www.instagram.com/stopsarcoidosis/ http://www.5000miles.us Thanks also to The White Hot Lizards and Sarc Patient Mark Steier for allowing me to use their song, Zombie as the official music for the Sarc Fighter podcast.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 13 Angela Frelander talks about how you can help fight Sarcoidosis

Mon, 20 Jul 2020 06:00:00 -0500

Angela Frelander is the person between you and a cure. Ok -- I won't put it all on her shoulders, but without her, The Foundation for Sarcoidosis Research and all the people working to make our lives better would not have the resources they need to keep going. Angela is the Director of Development for the Foundation. It is her job to raise money in order to keep everything going. COVID-19 has made everything that much more difficult. In this podcast, Angela talks about the challenges and how you can help.

Make a donation to the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/donate/

Other ways to give to FSR https://www.stopsarcoidosis.org/ways-to-give/

Many Thanks to Mark Steier and The White Hot Lizards for allowing their song, Zombie to be the official music of the Sarc Fighter Podcast! Mark is a fellow sarc fighter and you can hear his story in Episode 12 of the Sarc Fighter Podcast!

Here is the YouTube channel for the White Hot Lizards https://www.youtube.com/channel/UCmmkG9P6IaIQ8gGuLvM0G-A

Want a healthier diet Read this post by Charleton Harris https://sarcoidosisnews.com/2020/07/17/healthy-diet-lifestyle-treatment-control-inflammation/

And this by Athena Merritt https://sarcoidosisnews.com/2020/07/07/vegetarian-diet-pain-relief-reduce-inflammation/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 12: Mark Steier sings the song of Sarcoidosis and tells his own sarc story.

Mon, 06 Jul 2020 06:00:00 -0500

Mark Steier is a talented musician. His battle with sarcoidosis has dominated his life to the point he wrote and performed a song, called Zombie to describe the battle.

One stanza goes as follows: "Learn to suffer You’ll feel pain someday And learn endurance - Your strength will fade away

Dead man walking Trying to keep up the pace

Dead man walking

Counting down the days."

I can tell you that Mark's haunting melody is catchy -- but more than that it resonated with me -- as I'm sure it will with you. In this episode of the Sarc Fighter Podcast, Mark describes his fight with sarc and describes the feelings and emotions that led him to the lyrics. We will listen to the song in pieces, and then at the end -- in its entirety.

More than that, Mark is donating the proceeds from Zombie to the Foundation for Sarcoidosis Research.

If you would like to donate in honor of his efforts, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent to the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

May I suggest that you make a donation and also share the links above on your social media? The more people who know about Sarcoidosis, the easier it will be to raise funds to fight the disease. Zombie takes our message and puts it in easily consumable terms anyone can understand and relate to.

I've talked to so many people already, and I feel like some portion of each person's story is represented in this song. For some reason, I just think this song is important.

Meanwhile, if you would like to contact me all of my info is below.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 11 Andrea and Reading Wilson -- Founders of the Foundation for Sarcoidosis Research

Mon, 22 Jun 2020 06:00:00 -0500

Andrea Wilson knew she had a problem -- but doctors couldn't figure out what it was. Eventually, they discovered it was sarcoidosis. Despite living in a major city with great healthcare and the insurance to pay for it, Andrea struggled. Eventually, she and her husband, Reading took action - founding the Foundation for Sarcoidosis research.

Listen as they tell the story of growing from a fledgling concept at their kitchen table, to a multi-million dollar foundation that drives research and patient outreach around the world.

It is a true honor to have Andrea and Reading as guests on the Sarc Fighter podcast.

Here is some quick background on the founding of FSR https://www.stopsarcoidosis.org/about/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me carlinagency@gmail.com

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 10 Kerry Wong Talks about how sarc stole her life

Mon, 08 Jun 2020 06:01:00 -0500

Kerry Wong of Westchester, New York has an all too familiar story. Years and years of misdiagnosis followed by the ultimate discovery of sarcoidosis. When it was finally diagnosed, it gave her some answers but not much relief.

Note: Kerry had many great fundraisers planned for 2020 that were canceled because of the Coronavirus pandemic -- including a day at Yankee Stadium -- although we discussed that in the interview, I deleted that portion as it was no longer relevant.

Kerry's KISS and Westchester Support Group: https://www.stopsarcoidosis.org/support-group/kiss-westchester-support-group/

Kerry's article with the U.S. pain Foundation https://uspainfoundation.org/blog/pain-awareness-month-always-aware-of-my-chronic-pain/

Kerry's Support Group in Westchester (may not be meeting until COVID-19 pandemic is over) https://www.burke.org/media/news/2019/11/sarcoidosis-support-group/1971

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

https://www.stopsarcoidosis.org/coronavirus/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Bonus Podcast: Roundtable discussion on Sarcoidosis Associated Pulmonary Hypertension from Madrid, Spain

Tue, 12 May 2020 09:44:51 -0500

Hello Sarc Fighters. In this bonus podcast, we listen to the Sarcoidosis Associated Pulmonary Hypertension (SAPH) Guidelines Roundtable held on Monday, September 30, 2019, alongside the 2019 ERS Congress in Madrid, Spain.

Bayer is the original sponsor of the scientific and educational activities held during the event in Madrid.

It is presented in conjunction with the Foundation for Sarcoidosis Research and WASOG - the World Association for Sarcoidosis and Other Granulomatous Disorders.

Unlike most of the Sarc Fighter podcasts, this one is primarily for physicians. In particular, those working with patients who suffer severe cases of sarcoidosis in the lungs and how to determine if these advanced cases are driven by Sarcoidosis Associated Pulmonary Hypertension.

Panel members include:

Robert Baughman, Internist at University of Cincinnati with specialties in Pulmonary Diseases, Lung Disease, Interstitial Lung Disease https://www.wasog.org/committee/Baughman
Professor Athol Wells, Consultant and chest physician based at Royal Brompton Hospital https://www.rbht.nhs.uk/specialists/professor-athol-wells
Professor Marc Humbert, Head of the Pulmonology and Intensive Respiratory Care Department at University of Paris
Steven D. Nathan, Director of the Advanced Lung Disease Program and director of the Lung Transplant Program at Inova Fairfax Hospital https://www.inova.org/doctors/steven-d-nathan-md

Episode 9 COVID-19 & Sarcoidosis: What are the real risks? First data with Dr. Robert Baughman

Tue, 05 May 2020 14:38:44 -0500

Are sarcoidosis patients more likely to get COVID-19 and if they do, will outcomes be worse? For the first time, medical science has an answer to that question. Just in are the results of a study conducted by the University of Cincinnati, Albany Medical Center, and The Foundation for Sarcoidosis Research. The study was headed by Dr. Robert Baughman of the University of Cincinnati who talked to the Sarc Fighter Podcast about his findings.

Take the survey: https://redcap.research.cchmc.org/surveys/?s=TJXWAK4FCJ

Here is Dr. Baughman's bio: Dr. Baughman is Professor of Medicine at the University of Cincinnati. After completing undergraduate training at Yale University, he received his medical degree from Case Western Reserve School of Medicine. He joined the Internal Medicine staff at the University of Cincinnati after completing both an Internal Medicine residency and fellowship training in pulmonary diseases at the University of Cincinnati. His major research interests include: the treatment of sarcoidosis and bronchoalveolar lavage. Along with his long time collaborator Dr. Elyse Lower, he has developed several novel treatments for sarcoidosis, including methotrexate, thalidomide, leflunomide, and infliximab. Current studies include treatments for sarcoidosis associated fatigue and pulmonary hypertension due to sarcoidosis. He is on the editorial board of multiple subspecialty journals, and his publications include over 150 original papers and over 70 review articles and/or book chapters. He is on the editorial board of several journals, including American Journal of Respiratory and Critical Care Medicine and Chest. In addition, Dr. Baughman is the recent editor of books on sarcoidosis, interstitial lung disease, and ventilator associated pneumonia. He has been an active member of WASOG since its inception and is President Emeritus.

Here is the New Release from the study:

On April 27, 2020, the Johns Hopkins University Coronavirus Resource Center reported that over 3 million individuals world wide have been infected with COVID-19, including 979,077 in the United States. The vast majority are adults. In the United States, approximately 210 million individuals are above the age of 18. About 200,000 of these people have sarcoidosis.

COVID-19 has changed our world. In sarcoidosis, there have been many questions asked about COVID-19. These include:

Is a sarcoidosis patient more likely to get COVID-19 infection?
If a sarcoidosis patient becomes infected, does he or she have a worse outcome?
Is there increased risk if a patient is taking prednisone or other immunosuppressive drugs?
Does taking hydroxychloroquine protect a sarcoid patient from COVID-19?
Does race affect the risk or the outcome for COVID-19?

In order to answer these questions, The Foundation for Sarcoidosis and University of Cincinnati launched a questionnaire three weeks ago. They asked their patients to tell them if they had been infected with COVID-19 or not. If infected, they were asked to report what happened.

To date, over 1600 sarcoidosis patients have responded. Of these, only 31 patients, which is less than 2% of the total, reported having COVID-19 and most were able to be treated at home. None required mechanical ventilation.

We were unable to identify an increased risk associated with race, use of prednisone, or treatment with infliximab (Remicade). Also, the use of hydroxychloroquine (plaquenil) was neither protective nor a risk factor for infection.

Dr Robert Baughman, principal investigator of the study, had the following comment: “When COVID-19 began, there was controversy about the additional risks of sarcoidosis and treatments. This information, although only preliminary, found the rate of infection only slightly higher than the national average. Also, sarcoidosis patients with COVID-19 mostly did well, which is what we are seeing for many of our other patients.” Dr. Elyse Lower, co-director of the University of Cincinnati Sarcoidosis center added, “Thank you FSR for working on getting this information together in a timely manner.”

Dr. Marc Judson of Albany Medical Center and co-investigator of the study added the following comment: “Although more sarcoidosis patients need to participate in this survey to reach definite conclusions, these preliminary results are reassuring. These data show no obvious signal of a particularly poor outcome from COVID-19 infection in sarcoidosis patients. Furthermore, these preliminary results do not suggest that steroids or other immunosuppressive medications are placing sarcoidosis patient at a greater risk of a poor outcome. This has been an important undertaking by the FSR.”

This study is ongoing and we need more information now.

Episode 8 Patient Bob Gross tells his sarcoidosis story and more on sarc & COVID-19

Tue, 28 Apr 2020 09:24:29 -0500

In this episode, we learn about how Bob Gross, of Maine, has been trying to deal with Sarcoidosis from insurance problems, to prednisone to everything in between. I'll also look at the latest from the medical world as COVID-19 continues to be a problem, especially for people who are immunosuppressed.

Webinar on surviving Sarcoidosis in a COVID-19 Crisis https://www.thoracic.org/patients/lung-disease-week/2020/sarcoidosis-week/webinar.php

Grant money to help Sarc patients who have lost jobs or other financial means during COVID-19 https://sarcoidosisnews.com/2020/04/22/nord-opens-covid-19-financial-assistance-program-for-rare-disease-community/

Grant money awarded to help determine Sarc vs. Tuberculosis https://sarcoidosisnews.com/2020/04/13/nih-2-million-grant-wayne-state-university-researchers-to-develop-diagnostic-tests-sarcoidosis/?

You're stronger than you think! https://sarcoidosisnews.com/2020/04/08/nord-rare-disease-advice-covid-19-youre-stronger-than-you-think/

Cleveland Clinic COVID-19 free virtual test https://my.clevelandclinic.org/landing/preparing-for-coronavirus

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Episode 7 My Methotrexate issues and Cheryl Bradford tells her sarcoidosis story

Mon, 20 Apr 2020 06:00:00 -0500

In this episode, I talk about my issues with methotrexate (and ask you to share yours) while Cheryl Bradford of Queens, NY shares the details of how Sarcoidosis has slowly taken over her body to the point she can no longer work.

Cheryl's Facebook page https://www.facebook.com/cheryl.bradford.144

Cheryl Bradford Instagram https://www.instagram.com/iamshashe/

Web MD on Methotrexate https://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rheumatic-oral/details

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Episode 6 The Threat from COVID-19 with Jim Kuhn and Mindy Buchanan

Sun, 12 Apr 2020 21:21:52 -0500

Here on World Sarcoidosis Day the Sarc Fighter podcast looks at how we are all fighting the threat from COVID-19. Sarc patient Jim Kuhn shares the extreme measures he is using to stay safe, while he and Mandy Buchanan also dispense valuable insight on how to stay sane during these times of isolation.

The latest from Fauci https://www.nbcnews.com/politics/donald-trump/fauci-earlier-social-distancing-measures-obviously-would-have-saved-more-n1182186

Inspire https://www.inspire.com/groups/stop-sarcoidosis/?origin=freshen

20,000 U.S. COVID-19 Deaths... https://www.nbcnews.com/health/health-news/live-blog/coronavirus-live-updates-u-s-surpasses-20-000-deaths-lead-n1182086

Harvard Business Review. https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief?fbclid=IwAR1F_8DAVyZ8pNABoCGxlrJCbwSHHfXnmGXkjDCp5XSmXTyQnTbESeZ7o_o

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Episode 5 Chasta Posey tells her Sarcoidosis story from blindness to finding a path to positivity

Mon, 06 Apr 2020 09:20:19 -0500

Chasta Posey tells her sarcoidosis story in this episode of the Sarc Fighter podcast.

Chasta has a compelling story to tell about how sarcoidosis attacked her body and her life at a very young age. She has dealt with blindness, kidney issues, and breathing difficulties just to name a few. Yet through it all, she remains soooo positive.

Chasta is an advocate for the Foundation for Sarcoidosis Research.

Find her on Facebook at https://www.facebook.com/chasta.posey

Chasta's Linked In https://www.linkedin.com/in/chasta-posey-03990a80/

Chasta's Instagram https://www.instagram.com/chasta_lafaith/

Caronavirus Covid-19 update for Sarcoidosis patients https://www.stopsarcoidosis.org/coronavirus/

CNN Story on U.S. Open Tennis Courts setting up to fight Covid-19 https://www.cnn.com/2020/03/31/us/us-open-coronavirus-hospital/index.html

Other links associated with the Sarc Fighter Podcast:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Episode 4 Maggie Hudson of FSR on how we are fighting sarcoidosis

Mon, 23 Mar 2020 06:00:00 -0500

NOTE: This podcast was recorded in the early days of the caronavirus pandemic. I made several references to the status of the precautions at the time of the recording. They may seem outdated by the time you listen to this. I already know that The Foundation for Sarcoidosis Research has postponed its Chicago summit originally scheduled for April 3-5 to August 30 - September 1. Here is the link. https://www.stopsarcoidosis.org/rescheduled-chicago-patient-summit/

This podcast is an introduction to the Foundation for Sarcoidosis Research, which is fighting for funding to support research to beat sarcoidosis. I interviewed Maggie Hudson, who is the communications manager for the Foundation. She is extremely knowledgeable about the various aspects of the fight against the disease. I hope you will enjoy learning more about FSR and the potential for an eventual cure.

Please remember the Sarc Fighter podcast is uploaded every other Monday at 6 a.m. But, during the month of April, sarcoidosis awareness month, I will be releasing an episode EVERY Monday profiling four people who are fighting sarc every day.

Here is the link to the Foundation for Sarcoidosis Research: https://www.stopsarcoidosis.org/

World Association of Sarcoidosis and Other Granulomatous Disorders https://www.wasog.org/

More on Maggie Hudson: https://www.stopsarcoidosis.org/about/staff/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

Buy Frank's book: https://www.amazon.com/Walking-Silent-Pain-Autobiography-Resilience/dp/B084QM4ZFV/ref=sr_1_1?crid=H7OUADZISLMH&keywords=walking+in+silent+pain&qid=1581713780&s=books&sprefix=walking+in+silent+pain%2Cstripbooks%2C160&sr=1-1&pldnSite=1

Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/

Are you a cyclist?

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Episode 3 Patient Frank Rivera bares his soul.

Mon, 09 Mar 2020 06:00:00 -0500

Sarcoidosis patient Frank Rivera has one of the most severe cases of Sarc you can imagine. "It's easier to tell you where I don't have it, than where I do," Frank told me during our talk on the podcast. Frank was one a runner. A good one, turning a marathon time of 2:30 and running under a 4-minute mile. Now, he walks with a cane. Despite the setbacks, Frank Rivera is one of the loudest voices in the fight against Sarcoidosis. He organizes a walk on Long Island. He's just published a book. He even worked to get a billboard in New York's Times Square to fight Sarcoidosis. I hope you enjoy our talk recorded in February of 2020 at Chevy Chase, Maryland during a meeting of advocates for the Foundation for Sarcoidosis Research.

Frank's Walk https://www.ticketor.com/sarcoidosisofli/event/6th-annual-sarcoidosis-of-long-island-awareness-walk-187357

Frank's website, Sarcoidosis of Long Island https://www.sarcoidosisofli.org/

Other mentions from the Podcast

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/