Thal Pals: The Alpha Beta Revolution

BloodStream Media
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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.

  1. Jul 8 ·  Video

    Building Community Through Advocacy in Thalassemia

    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.

    Building Community Through Advocacy in Thalassemia

  2. May 27 ·  Video

    The Turning Point - How Madina Margeson Took Control of her Thalassemia Journey

    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.

    The Turning Point - How Madina Margeson Took Control of her Thalassemia Journey

  3. Apr 22

    Stages of Life in Thalassemia - Part 2 (ASH)

    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.

    Stages of Life in Thalassemia - Part 2 (ASH)

  4. Apr 8

    Stages of Life in Thalassemia - Part 1 (ASH)

    Being an adult with thalassemia comes with unique challenges—and victories—at every stage of life. On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria Badalamenti and co-host Dr. Kevin Kuo sit down with Dr. Scott Peslak, physician scientist and director of the Adult Comprehensive Thalassemia Program at UPenn. From navigating the tricky transition from pediatric to adult care, to managing transfusions, iron chelation, and long-term health in your 30s, 40s, and beyond, Dr. Peslak shares insights for thriving at every age. He also highlights what life looks like for patients in their 50s, 60s, and beyond—and why comprehensive adult care and new research initiatives are critical for the future of the thalassemia community. Whether you're newly navigating adult care, managing chronic treatment, or supporting a loved one, this episode gives real-world guidance, hope, and strategies to help you live well with thalassemia. 🎧 Listen now — link in bio! .. Listen, rate, review, and subscribe wherever you get your podcasts! .. 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.  .. Thal Pals is sponsored by @Agios Pharmaceuticals Inc. Visit Agios.com to learn more. .. This podcast is not intended as medical advice. Please consult your healthcare team with any treatment re­lated questions.

    Stages of Life in Thalassemia - Part 1 (ASH)

  5. Mar 25

    Transfusion Experience

    In this special episode, NinaMaria steps into the guest seat as Dr. Kevin Kuo interviews her about her lived experience with transfusion-dependent thalassemia. She opens up about the gratitude she feels for transfusions, the logistical and emotional challenges of treatment days, and how fatigue and scheduling impact her daily life. Together, they explore what new patients should know when considering transfusions, including practical tips, self-compassion, and advocating for personal needs. This honest, relatable conversation offers valuable insight for patients, caregivers, and providers navigating the transfusion journey.   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.

    Transfusion Experience

  6. Feb 28

    Learnings from the Red Cell Revolution

    This special crossover episode brings together advocates from PK deficiency, thalassemia, and sickle cell disease to share insights from the Red Cell Revolution and the powerful connections formed across rare hemolytic anemias. NinaMaria Badalamenti leads a heartfelt conversation with Jill Welle, Laurice Levine, and Cassandra Trimnell about the common challenges these communities face, from fatigue to stigma to navigating complex care. Together, they explore how collaboration, shared education, and collective advocacy strengthen each individual movement. The episode offers hope, perspective, and a reminder that these rare-disease communities are stronger together.   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 guests featured in this episode have been compensated for their time.

    Learnings from the Red Cell Revolution

  7. Jan 28

    Results from a Global Health Literacy Survey in Thalassemia

    On this episode of Thal Pals: The Alpha Beta Revolution, NinaMaria Badalamenti and Dr. Kevin Kuo sit down with two giants in the thalassemia field, Dr. Sujit Sheth and Dr. Nica Cappellini, to unpack findings from a new global health literacy survey. The conversation explores why patient understanding of hemoglobin levels, monitoring, and treatment goals remains so critical, whether someone lives with transfusion-dependent or non-transfusion-dependent thalassemia. Through personal stories and decades of expertise, the guests illuminate how far care has come, where gaps remain, and what true collaboration between patients and clinicians can look like. It's an insightful and empowering discussion for anyone impacted by thalassemia.   To read A White Paper on Global Health Literacy in Thalassemia, click here.   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.

    Results from a Global Health Literacy Survey in Thalassemia

  8. Jan 7

    Building Connections - Live from the TIF Pan-American Conference!

    On this special episode of Thal Pals, we're live at the TIF Pan-American Conference in Washington, DC! With an introduction by Brian Goff, CEO of Agios Pharmaceuticals, hosts Dr. Kevin Kuo and NinaMaria Badalamenti speak with distinguished panelists Radhika Sawh, Rafaela Palharini and Florencia Cillo. They share their personal experiences, discuss the importance of openness and support systems, and emphasize the evolving conversation from surviving to thriving with thalassemia. For more information on the new thalassemia treatment, visit thalassemiatreatment.com. 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.

    Building Connections - Live from the TIF Pan-American Conference!
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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.

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