In this episode of #ThroughTheGenes, hosts  Wunmi Bakare, Christelle Salomon, and Dima Hendricks, engage in a profound conversation with Dr. Sharl Azar, Medical Director at Massachusetts General Hospital, about the racial disparities in sickle cell disease treatment and advocacy. 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

In this episode of the Through the Genes podcast, hosts Wunmi Bakare and Christelle Solomon explore the complexities of sickle cell disease and the transformative role of stem cell donation with guests Akshay Sharma and Dapo Bakare

In this episode of the #ThroughTheGenes podcast, hosts Wunmi Bakare and Christelle Salomon engage in a heartfelt conversation with Maite Rodriguez about her daughter Alessia's journey with sickle cell disease and the transformative therapies they pursued. 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. 

To conclude our discussion on the topic "What Happens To The Body In Gene Therapy", our hosts - Wunmi Bakare and Christelle Salomon - sat down with Dr. Elizabeth Krieger, who is a pediatric hematologist-oncologist specializing in bone marrow transplant and cellular therapies. Discover why chemotherapy is carried out for these therapies, the side effects of chemotherapy, and why some protocols require radiation and others do not. #ThroughTheGenes #TTGS2 #TTGPodcast #GeneTherapy #TTGxBeam #TTGxSynthego #TTGxUCSF #TTGxSCP #SickleCellDisease #TransformativeTherapiesForSickleCell #SickleCellAwareness #SickleCellEducation

In this episode of #ThroughTheGenes, we delve into the transformative role of fetal hemoglobin in treating sickle cell disease. Join hosts - Wunmi Bakare and Christelle Salomon - as they explore groundbreaking gene therapy advancements with Dr. Matt Porteous, Co-founder of Kamau Therapeutics. Discover how genome editing techniques are being used to reactivate fetal hemoglobin, offering new hope for patients by reducing the severity of sickle cell symptoms. We explore the FDA-approved therapies, Lyfgenia and Casgevy, and discuss the transformative potential these treatments hold. Discover the science behind these therapies, the journey from concept to approval, and the impact on patients' lives. Tune in to learn how gene therapy is reshaping the future for those living with sickle cell disease. #throughthegenes #sicklecell #genetherapy #patientadvocacy #sicklecellwarriors #patientexperience #healthpodcast #transformativetherapy #healthcare #experimentaltherapies #geneticdisorder

<p>In this episode of Through the Genes, we had Pediatric Hematologist-Oncologist, Dr. Mark Walters with us. The hosts discussed the topic, The Journey to Transformative Therapy - Maintaining Eligibility.This is an episode for anyone who is interested in how a sickle cell patient maintain their health so they are a perfect candidate for cell and gene based therapies, so, if this is you, then this is the episode for you.If you enjoyed this episode, go ahead to like and share with someone and if you haven&#39;t subscribed, you should do that now.<br><a href="https://www.youtube.com/hashtag/genetherapy">#GeneTherapy</a> <a href="https://www.youtube.com/hashtag/ttgxbeam">#TTGxBeam</a> <a href="https://www.youtube.com/hashtag/ttgxsynthego">#TTGxSynthego</a> <a href="https://www.youtube.com/hashtag/ttgxucsf">#TTGxUCSF</a> <a href="https://www.youtube.com/hashtag/ttgxscp">#TTGxSCP</a> <a href="https://www.youtube.com/hashtag/sicklecelldisease">#SickleCellDisease</a> <a href="https://www.youtube.com/hashtag/transformativetherapiesforsicklecell">#TransformativeTherapiesForSickleCell</a> <a href="https://www.youtube.com/hashtag/sicklecellawareness">#SickleCellAwareness</a> <a href="https://www.youtube.com/hashtag/sicklecelleducation">#SickleCellEducation</a></p>

<p>In this episode of Through the Genes, hosts Wunmi Bakare, Dima Hendricks, and Christelle</p><p>Salomon engage in a heartfelt discussion about their personal journeys with sickle cell disease</p><p>and the transformative therapies they have explored. They share their motivations for seeking</p><p>experimental treatments, the emotional and physical challenges they faced, and the importance</p><p>of mental health and self-care. The conversation highlights the resilience of sickle cell warriors</p><p>and the impact of their experiences on their identities. The episode concludes with a</p><p>light-hearted quick-fire round, reinforcing the bond among the speakers and their commitment to</p><p>patient advocacy.</p>

<p>In this episode of Through the Genes, host Wunmi Bakare engages with guests Seonni and Vanesha from the Mind the Gap podcast to discuss the complexities of visible and invisible disabilities, personal health journeys, and the importance of advocacy within the South Asian community. The conversation explores their experiences with health diagnoses, the impact of caregiving, and the cultural stigma surrounding health issues, particularly sickle cell disease. The guests share insights on the need for greater awareness and education, emphasizing the power of storytelling and personal narratives in fostering understanding and support.</p><p><br /></p><p>Keywords</p><p><br /></p><p>Keywords:</p><p>disabilities, health, identity, podcast, advocacy, South Asian community, sickle cell disease, mental health, personal growth, caregiving</p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>

<p>Through the Genes Podcast | Bonus Episode: Curative Therapies Beyond the Borders</p><p><br /></p><p>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.</p><p><br /></p><p><br /></p><p><br /></p><p>#NHGRIxTTP #ThroughTheGenes #GeneTherapyPodcast #ThroughThePain #global #MedicalResearch #SickleCellGeneTherapy #SickleCellDisease #Letstalkaboutsicklecell #SickleCellTreatment #SickleCellResearch #ClinicalTrials #CRISPR #GeneEditing </p>

<p>In <strong>Season 2</strong>, we go deeper—confronting ethical dilemmas, highlighting critical clinical insights, and sharing unfiltered patient experiences that matter most to the sickle cell community. This season empowers warriors, caregivers, and providers with knowledge to navigate curative therapies with clarity and confidence. We also introduce our newest sickle sister, Christelle Salomon,</p><p>🧬 <strong>Featured Experts &amp; Guests:</strong></p><ul><li><p>Dr. Mark Walters</p></li><li><p>Dr. Matthew Porteus</p></li><li><p>Dr. Akshay Sharma</p></li><li><p>Dr. Elizabeth Krieger</p></li><li><p>Chris Lundy</p></li><li><p>Oladapo (Daps) Bakare</p></li><li><p>Dr. Marsha Treadwell</p></li></ul><p>Supported by <strong>Beam Therapeutics</strong>, <strong>Synthego Corporation®</strong>, and <strong>Kamau Therapeutics</strong>, this series is a must-listen for anyone seeking hope, truth, and transformation in the fight against sickle cell.</p><p>💥 <strong>Mark your calendar – Season 2 premieres June 19</strong>. Let’s change the narrative, together.</p><p>#ThroughTheGenes #SickleCellAwareness #GeneTherapy #PatientVoices #HealthEquity #WorldSickleCellDay</p>

<p>In this episode of #ThroughTheGenes, we are joined by Kira Dineen, host of the award-winning podcast, <em>DNA Today</em>. Kira brings her expertise in genetics to the conversation as we explore the intersection of DNA, gene therapies, and sickle cell disease. Together, we discuss how science is advancing treatment options and how storytelling can amplify the voices of those affected by genetic conditions. Tune in for an engaging conversation that blends cutting-edge science with powerful personal narratives, shining a light on the future of gene-based therapies for sickle cell warriors.</p>

<p>In this episode of <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a>, we’re excited to welcome back Dr. Staci Martin as she puts Acceptance and Commitment Therapy (ACT) into practice. Dr. Martin provides an in-depth exploration of mental health challenges specific to individuals with sickle cell disease, especially those undergoing curative therapy.</p>

<p>Dr. Staci Martin joins us for a conversation that explores various aspects of mental health and self-care for individuals with sickle cell disease, particularly those undergoing the curative therapy process. The chapters cover topics such as common mental health issues, preparing for curative therapy, identity crisis and self-discovery, developing mental health tools, support for individuals unable to pursue curative therapy, establishing healthy boundaries, challenges of identity crisis and survivor's guilt, qualifications for a therapist, self-help resources, and acceptance and commitment therapy (ACT). The conversation emphasizes the importance of psychological flexibility and finding support in one's tribe. In this conversation, Staci and Dima discuss the power of thoughts and beliefs in shaping our lives. They explore the concept of limiting beliefs and how they can hold us back from reaching our full potential. They also discuss strategies for identifying and challenging these beliefs, as well as creating empowering beliefs that support our goals and aspirations. The conversation emphasizes the importance of taking action and aligning our thoughts with our values.</p>

<p>This episode concludes part two of the interview with <em><strong>Genesis Jones. </strong></em>She shares her experience with post-transplant complications, specifically hemolytic anemia, and the treatments she has undergone. She discusses the challenges of managing chronic pain and the impact it has on her mental health. </p> <p><br /></p> <p>Later in the episode, Wunmi and Dima interview <em><strong>Wynona Coles</strong></em>, 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.</p> <p><br /></p>

<p>In this conversation, <em><strong>Dr. Caterina Minniti</strong></em> discusses curative therapies for sickle cell disease, focusing on gene therapy. She explains the process of preparing for gene therapy, including the discontinuation of hydroxyurea and the use of blood transfusions. Dr. Minniti also discusses the ideal patient for gene therapy, the timeline for the preparation process, and the manufacturing process of edited stem cells. She compares and contrasts gene therapy with stem cell transplantation and bone marrow transplantation, highlighting the potential complications and ongoing research in the field.</p> <p><br /></p> <p>We are also joined by <em><strong>Genesis Jones. </strong></em> 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. </p> <p><br /></p>

<p>Welcome to episode 3 of #ThroughTheGenes.</p> <p>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!</p> <p>YouTube episode: <br />https://youtu.be/ZzzvIOizFtM #SickleCellDisease #GeneTherapy #Healthcare #Podcast #ThroughTheGenes #SickleCellAwareness</p>

<p>Welcome to Episode 2 of <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">⁠#ThroughTheGenes⁠</a>. In this episode, we hear from <a href="https://www.technologyreview.com/author/jimi-olaghere/" rel="ugc noopener noreferrer" target="_blank">Jimi Olaghere</a> a patient who successfully undergone a curative therapy. </p> <p><a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">⁠#ThroughTheGenes⁠</a> 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 <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">⁠#ThroughTheGenes⁠</a> 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 <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">⁠#ThroughTheGenes⁠</a>, visit <a href="www.ThroughTheGenes.com." rel="ugc noopener noreferrer" target="_blank">⁠www.ThroughTheGenes.com.⁠</a> Don't forget to like, comment, and subscribe for more episodes!</p> <p>Youtube Episode: <a href="https://youtu.be/Ykg9xrNgnL0" target="_blank" rel="ugc noopener noreferrer">https://youtu.be/Ykg9xrNgnL0</a> <a href="https://www.youtube.com/hashtag/sicklecelldisease" rel="ugc noopener noreferrer" target="_blank">⁠#SickleCellDisease⁠</a> <a href="https://www.youtube.com/hashtag/genetherapy" rel="ugc noopener noreferrer" target="_blank">⁠#GeneTherapy⁠</a> <a href="https://www.youtube.com/hashtag/healthcare" rel="ugc noopener noreferrer" target="_blank">⁠#Healthcare⁠</a> <a href="https://www.youtube.com/hashtag/podcast" rel="ugc noopener noreferrer" target="_blank">⁠#Podcast⁠</a> <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">⁠#ThroughTheGenes⁠</a> <a href="https://www.youtube.com/hashtag/sicklecellawareness" rel="ugc noopener noreferrer" target="_blank">⁠#SickleCellAwareness⁠</a><strong></strong></p>

<p>Welcome to Episode 1 of <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a>, a show that highlights the risks, benefits, and limitations of cell and gene-based therapies as a curative option for sickle cell disease. In this inaugural episode, we delve into the history of sickle cell research with esteemed guests Vence Bonham Jr., JD, and Dr. Matthew Hsieh. <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a> 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. In this episode, you will learn: -The historical milestones in sickle cell research</p> <p> -Key contributions by researchers and medical professionals</p> <p> -How past research has shaped current treatment options and future possibilities</p> <p> -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 <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a> 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 <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a>, visit <a href="www.ThroughTheGenes.com." target="_blank" rel="ugc noopener noreferrer">www.ThroughTheGenes.com.</a> Don't forget to like, comment, and subscribe for more episodes! <a href="https://www.youtube.com/hashtag/sicklecelldisease" rel="ugc noopener noreferrer" target="_blank">#SickleCellDisease</a> <a href="https://www.youtube.com/hashtag/genetherapy" rel="ugc noopener noreferrer" target="_blank">#GeneTherapy</a> <a href="https://www.youtube.com/hashtag/healthcare" rel="ugc noopener noreferrer" target="_blank">#Healthcare</a> <a href="https://www.youtube.com/hashtag/podcast" rel="ugc noopener noreferrer" target="_blank">#Podcast</a> <a href="https://www.youtube.com/hashtag/throughthegenes" rel="ugc noopener noreferrer" target="_blank">#ThroughTheGenes</a> <a href="https://www.youtube.com/hashtag/sicklecellawareness" rel="ugc noopener noreferrer" target="_blank">#SickleCellAwareness</a><strong></strong></p>

<p>Premiering June 19, 2024 (World Sickle Cell Day), the #ThroughTheGenes is an informative podcast series highlighting the risks, benefits, and limitations of gene-based therapies as a curative option for sickle cell disease. The show is hosted by sickle sisters, Wunmi Bakare and Dima Hendricks, taking you behind the lived experience of patients who participated in the curative process; revealing their high, lows and everything in between.</p> <p><br></p> <p>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 <a href="https://www.genome.gov/research-at-nhgri/Projects/Democratizing-Education" target="_blank" rel="noopener">Democratizing Education for Sickle Cell Disease Gene Therapy Project</a> supported by the National Human Genome Research Institute (NHGRI-NIH). </p>