The discussion delves into the historical context of race in medicine, the challenges faced by sickle cell warriors, and the systemic barriers in healthcare.

Dr. Azar shares insights on the importance of advocacy, the role of healthcare providers, and the future of gene therapy for sickle cell disease.

We hope you enjoy this conversation, leave a comment below to share your thoughts and ask your questions about gene and cell based therapies and treatment for sickle cell disease.

#sicklecelldisease #racialdisparities #healthcareadvocacy #genetherapy, #systemicbias #sicklecellawarenessmonth

They engage with Dr. Akshay Sharma, a pediatric bone marrow transplant physician, who provides insights into the donor's perspective, the HLA screening process, and the various methods of stem cell collection. The conversation also touches on the emotional and physical challenges faced by donors, the importance of blood group compatibility, and the need for diverse donor registries.

Personal reflections from Dapo Bakare, Wunmi's brother and donor, highlight the family bonds and support systems that play a crucial role in the transplant journey.

The episode concludes with a call to action for listeners to consider joining donor registries and participating in clinical research to help advance treatments for sickle cell disease.

#ThroughTheGenes #TTGS2 #TTGPodcast #GeneTherapy #TTGxBeam #TTGxSynthego #TTGxUCSF #TTGxSCP #SickleCellDisease #TransformativeTherapiesForSickleCell #SickleCellAwareness #SickleCellEducation

The discussion covers the emotional and practical challenges of caregiving, the decision to have another child as a potential donor, and the complexities of preparing for a bone marrow transplant.

Maite shares her family's experiences, the support they received, and their hopes for Alessia's future post-transplant, emphasizing the importance of community and open communication throughout their journey.

Don't forget to subscribe and share with someone that needs to hear it. 

#ThroughTheGenes #TTGS2 #TTGPodcast #GeneTherapy #TTGxBeam #TTGxSynthego #TTGxUCSF #TTGxSCP #SickleCellDisease #TransformativeTherapiesForSickleCell #SickleCellAwareness #SickleCellEducation

#throughthegenes #sicklecell #genetherapy #patientadvocacy #sicklecellwarriors #patientexperience #healthpodcast #transformativetherapy #healthcare #experimentaltherapies #geneticdisorder

Salomon engage in a heartfelt discussion about their personal journeys with sickle cell disease

and the transformative therapies they have explored. They share their motivations for seeking

experimental treatments, the emotional and physical challenges they faced, and the importance

of mental health and self-care. The conversation highlights the resilience of sickle cell warriors

and the impact of their experiences on their identities. The episode concludes with a

light-hearted quick-fire round, reinforcing the bond among the speakers and their commitment to

patient advocacy.

Keywords

Keywords:

disabilities, health, identity, podcast, advocacy, South Asian community, sickle cell disease, mental health, personal growth, caregiving

In this episode of #ThroughTheGenes, the hosts of the Let's Talk about Sickle Cell Podcast, Jenica Leah and Maya Bloomberg discuss the critical topic of sickle cell disease, focusing on advocacy, treatment options, and the disparities in healthcare systems between the UK and the USA. They share personal stories and insights into the challenges faced by sickle cell patients, including the high costs of treatment, the importance of mental health support, and the role of community in advocacy. The conversation highlights the need for education and awareness to improve patient outcomes and the power of collaboration among advocates to drive change.

#NHGRIxTTP #ThroughTheGenes #GeneTherapyPodcast #ThroughThePain #global #MedicalResearch #SickleCellGeneTherapy #SickleCellDisease #Letstalkaboutsicklecell #SickleCellTreatment #SickleCellResearch #ClinicalTrials #CRISPR #GeneEditing

🧬 Featured Experts & Guests:

• Dr. Mark Walters

• Dr. Matthew Porteus

• Dr. Akshay Sharma

• Dr. Elizabeth Krieger

• Chris Lundy

• Oladapo (Daps) Bakare

• Dr. Marsha Treadwell

Supported by Beam Therapeutics, Synthego Corporation®, and Kamau Therapeutics, this series is a must-listen for anyone seeking hope, truth, and transformation in the fight against sickle cell.

💥 Mark your calendar – Season 2 premieres June 19. Let’s change the narrative, together.

#ThroughTheGenes #SickleCellAwareness #GeneTherapy #PatientVoices #HealthEquity #WorldSickleCellDay

Later in the episode, Wunmi and Dima interview Wynona Coles, the research lab manager at the National Heart, Lung, and Blood Institute at the National Institutes of Health. They discuss curative therapy options for sickle cell disease, with a focus on gene therapy. They cover topics such as the role of the referral transplant coordinator, eligibility criteria for gene therapy, pre-testing for the therapy, the process of stem cell collection, and the success stories of curative therapy. They also touch on the FDA approval of gene therapy and the timeline for the entire process.

We are also joined by Genesis Jones. Genesis is a sickle cell warrior, survivor, advocate, student, and speaker, shares her journey with curative therapy. She discusses her life before the therapy, the motivation behind pursuing it, the challenges she faced during the transplant journey, and the concerns and side effects she experienced.

Amanda Olaghere shares her experience as the caregiver to her husband, Jimi, who participated in a gene therapy clinical trial for sickle cell disease. Before the trial, their lives were filled with constant hospital visits and emergency room visits due to Jimi's pain crises. The decision to participate in the trial was made after reading an article about another patient's success story (Victoria Gray). The couple weighed the risks and logistics, including Jimi's work, Amanda's pregnancy and a global pandemic. Amanda discusses the challenges of being a caregiver, including adjusting to hospital life, outsourcing tasks, and managing her mental health. Despite the difficulties, the trial brought hope and a sense of relief for their future. #ThroughTheGenes provides an in-depth look at the lived experiences of patients who have participated in the curative process, sharing their highs, lows, and everything in between. This series is designed for patients, caregivers, community-based organizations, researchers, and educators, aiming to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease. Subscribe to the #ThroughTheGenes email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news. To learn more about #ThroughTheGenes, visit www.ThroughTheGenes.com. Don't forget to like, comment, and subscribe for more episodes!

YouTube episode: https://youtu.be/ZzzvIOizFtM #SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness

⁠#ThroughTheGenes⁠ provides an in-depth look at the lived experiences of patients who have participated in the curative process, sharing their highs, lows, and everything in between. This series is designed for patients, caregivers, community-based organizations, researchers, and educators, aiming to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease. Subscribe to the ⁠#ThroughTheGenes⁠ email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news. To learn more about ⁠#ThroughTheGenes⁠, visit ⁠www.ThroughTheGenes.com.⁠ Don't forget to like, comment, and subscribe for more episodes!

Youtube Episode: https://youtu.be/Ykg9xrNgnL0 ⁠#SickleCellDisease⁠ ⁠#GeneTherapy⁠ ⁠#Healthcare⁠ ⁠#Podcast⁠ ⁠#ThroughTheGenes⁠ ⁠#SickleCellAwareness⁠

-Key contributions by researchers and medical professionals

-How past research has shaped current treatment options and future possibilities

-The clinical information referenced in the show comes from patient educational materials developed by the Democratizing Education for Sickle Cell Disease Gene Therapy Project, supported by the National Human Genome Research Institute (NHGRI-NIH). Subscribe to the #ThroughTheGenes email list to stay up to date as new episodes, tools, and resources become available, and to receive other TTG-related news. To learn more about #ThroughTheGenes, visit www.ThroughTheGenes.com. Don't forget to like, comment, and subscribe for more episodes! #SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness

This collaborative effort aims to help patients and their support networks navigate emerging developments in gene therapies for sickle cell disease. The clinical information referenced on #ThroughTheGenes was taken from patient educational materials developed by the Democratizing Education for Sickle Cell Disease Gene Therapy Project supported by the National Human Genome Research Institute (NHGRI-NIH).