Thal Pals: The Alpha Beta Revolution

In this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalamenti and Dr. Kevin Kuo tackle common myths and misconceptions about thalassemia. They discuss the importance of communicating symptoms like fatigue to healthcare providers, the complex relationship between hemoglobin levels and how patients feel, and the realities of iron overload for both transfusion-dependent and non-transfusion-dependent individuals. The episode also explains why ferritin isn't the only important measure of iron overload and uses memorable analogies to make these concepts clear. Tune in for part one of this myth-busting series and get ready for more insights in the next episode!   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guest featured in this episode have been compensated for their time.  

On this episode of Thal Pals: The Alpha-Beta Revolution Podcast, recorded live at the Cooley's Anemia Foundation (now Thalassemia Foundation of America) Patient Family Conference in Chicago, hosts Nina Maria Badalamenti and Dr. Kevin Kuo explore the theme "All in the Family: Living with Thalassemia Together." Joined by two families – Madina, her husband David, and daughter Alexia; alongside Radhika, her husband Dan, and daughter Seema – they discuss how thalassemia impacts entire households, from navigating diagnosis transitions and treatment logistics to the emotional toll on spouses, children and parents. The conversation dives deeply into stigma, with Radhika sharing how her family hid her diagnosis during the HIV/AIDS era and the liberation that came from finally opening up, while Madina reflects on overcoming shame after transitioning from non-transfusion-dependent to transfusion-dependent care. The episode highlights the power of community, the importance of provider empathy, and the hope that comes from connection and mutual support.   For more information about the Thalassemia Foundation of America, visit thalassemia.org.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.  

This episode of Thal Pals: The Alpha Beta Revolution brings together leading advocates from around the world to explore how community, culture, and connection strengthen the global thalassemia movement. NinaMaria sits down with Craig Butler, Maria Hadjidemetriou, and Dina Steagall to discuss the power of storytelling, cross-cultural support, and the importance of meeting patients where they are. Together, they share personal experiences and real-world examples of how advocacy can transform care, expand access, and empower patients to live fuller lives. This uplifting conversation highlights the many ways individuals and organizations can build community and create meaningful change.   For more information about Cooley's Anemia Foundation, visit thalassemia.org.   For more information ABRASTA, visit ABRASTA.org.br.   For more information about Thalassemia International Federation (TIF), visit thalassaemia.org.cy   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guest featured in this episode have been compensated for their time.  

On this episode of Thal Pals: The Alpha Beta Revolution, Madina Margeson shares her powerful journey living with beta thalassemia, from being told she was "lucky" as a child to discovering the long-term impact of years without proper care. After uncovering serious complications in adulthood, Madina took control of her health, advocating for answers, seeking expert care, and ultimately transforming her approach to treatment. She opens up about fear, stigma, and the emotional toll of late diagnosis, while highlighting the life-changing importance of community and education. Her story is a compelling reminder that "stable" isn't always enough, and that pushing for better care can change everything. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.  TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guests featured in this episode have been compensated for their time.

In Part 2 of our Stages of Life series, NinaMaria and Dr. Kevin Kuo welcome back Dr. Scott Peslak for a deep dive into the unique considerations thalassemia patients face in their 20s, 30s, and beyond. The conversation covers fertility and pregnancy planning, navigating cellular therapies, and balancing parenthood with thalassemia care. Dr. Peslak also discusses aging with thalassemia, from fatigue and bone health to cardiac and endocrine monitoring, emphasizing how proactive care and the right medical team can support long, thriving lives. This episode offers clarity, encouragement, and practical guidance for anyone moving through adulthood with thalassemia.   SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.   This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.    TRANSPARENCY STATEMENT  Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Hosts and guest featured in this episode have been compensated for their time.