Thal Pals: The Alpha Beta Revolution

Thal Pals: The Alpha Beta Revolution

BloodStream Media
Država Združene države Amerike
Jezik EN
Epizode 43
Zadnja 19.08.2026

Thal Pals: The Alpha Beta Revolution is a podcast for patients, caregivers, providers, and others affected by thalassemia. Episodes offer education, scientific updates, and perspectives from the thalassemia community. The show is sponsored by Agios Pharmaceuticals and directs listeners to RethinkThalassemia.com for more information. It is intended for informational and educational purposes only and is not medical advice.

Epizode

  • All in the Family: Living with Thalassemia Together 19.08.2026 48min
    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.  
  • Building Community Through Advocacy in Thalassemia 08.07.2026 28min
    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.  
  • The Turning Point - How Madina Margeson Took Control of her Thalassemia Journey 27.05.2026 55min
    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.
  • Stages of Life in Thalassemia - Part 2 (ASH) 22.04.2026 37min
    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 1 (ASH) 08.04.2026 27min
    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.  
  • Transfusion Experience 25.03.2026 16min
    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.  
  • Learnings from the Red Cell Revolution 28.02.2026 30min
    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.  
  • Results from a Global Health Literacy Survey in Thalassemia 28.01.2026 43min
    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.
  • Building Connections - Live from the TIF Pan-American Conference! 07.01.2026 43min
    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.
  • Thalassemia Myth-Busting: Part 2 – Complications, Exercise, & Transfusions 05.11.2025 20min
    In part two of their myth-busting series, NinaMaria Badalamenti and Dr. Kevin Kuo continue to break down common misconceptions about thalassemia. They discuss the risks and complications for both alpha and beta thalassemia, the importance of individualized care, and why physical activity is encouraged for people living with the condition. The episode also covers genetic inheritance, the realities of transfusion schedules, and the need for patients to advocate for themselves. Tune in for practical insights and empowering advice for the thalassemia community!   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.
  • Thalassemia Myth-Busting: Part 1 – Fatigue, Hemoglobin & Iron Levels 22.10.2025 19min
    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.  
  • Navigating Fertility, Pregnancy, & Parenthood with Thalassemia 17.09.2025 33min
    Hematologist Dr. Arielle Langer joins host NinaMaria Badalamenti to unpack fertility, pregnancy, and family planning for people with thalassemia. From timing and iron control to genetic counseling, birth control options, and postpartum care, this episode offers practical, clear guidance for every stage of the 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.    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.
  • Breaking the Silence: Thalassemia, Stigma & Strength in the Arab Community 23.07.2025 28min
    In this powerful Arabic-language episode, Dr. Sherif Badawy shares his journey from Egypt to the U.S., his lifelong passion for thalassemia care, and the silent weight of stigma families often carry alone. From gene therapies to community education, this one's about more than medicine—it's about connection. A must-listen for anyone impacted by thalassemia or passionate about rare disease advocacy. 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.  
  • Transitioning with Thal: From Pediatric to Adult Care 25.06.2025 32min
    In this episode of Thal Pals, NinaMaria speaks with nurse practitioner Melony Avella-Howell about the challenges and solutions in transitioning from pediatric to adult care for patients with chronic illnesses like thalassemia and sickle cell disease. They discuss the importance of community support groups, tailored transition programs, and the roles of providers in helping young adults navigate this vulnerable period. Melony shares insights from her experience in hematology, emphasizing the need for individualized care plans and proactive patient advocacy. Together, they highlight the significance of addressing both medical and life challenges to ensure comprehensive care.   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.
  • A Legacy of Hope: The Cooley's Anemia Foundation Journey 21.05.2025 43min
    On this episode NinaMaria talks with influential leaders of the Cooley's Anemia Foundation (CAF). Guests Bob Ficarra, Craig Butler, and Ralph Colasanti discuss the foundation's 70-year history, advocacy efforts, and pivotal role in advancing research and patient care for thalassemia. The conversation also emphasizes the significance of patient involvement, global outreach, and ongoing initiatives such as gene therapy and the annual CAF conference. Join us as we explore how CAF continues to impact patients' lives through comprehensive support and a strong sense of community.   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.  
  • Cultural Stigmas and Unity in the Thalassemia Community 23.04.2025 41min
    On this episode of Thal Pals: The Alpha Beta Revolution, patient advocate NinaMaria discusses the cultural stigmas surrounding thalassemia with three guests, Ralph Colasanti, Radhika Sawh, and Erick Phyakeo. Each shares their personal experiences with the condition and the cultural barriers they have faced and overcome. The conversation highlights the importance of community, connection, and empowerment among Thal patients, aiming to break down stigmas and encourage others to share their stories.   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.  
  • Life with Thalassemia: A Mother's Story 19.03.2025 32min
    On this episode of Thal Pals, host NinaMaria talks with Maria Saradpan about her experiences as a caregiver to her daughter Camila, who has thalassemia. Maria shares her journey from initial fear and isolation to finding a supportive community and growing relationships with fellow caregivers and patients. The importance of a strong caregiver network, blood donations, and positive experiences at the hospital are highlighted. The episode also features Camila and her sister Mikayla discussing their unique bond and experiences 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. Host and guest featured in this episode have been compensated for their time.  
  • Mentors and Milestones: Inspiring the Next Generation of Hematologists 26.02.2025 34min
    Join NinaMaria and Dr. Kuo in conversation with guests Dr. Priya Chandrakumaran and Dr. Hayoung Roh, hematology residents, as they share their journeys and passion for hematology. They discuss their motivations, the importance of patient-centered care, and experiences with thalassemia patients. Their insights highlight the value of mentorship and patient interactions in shaping medical careers.    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 the Perfect Thalassemia Care Team: Insights from Dr. Sujit Sheth 12.02.2025 28min
    On this episode of Thal Pals, NinaMaria interviews Dr. Sujit Sheth, a renowned red cell doctor specializing in thalassemia and other red cell disorders. Dr. Sheth emphasizes the importance of assembling a dedicated care team, advocates for patient self-advocacy, and provides valuable insights into individualized patient care. He also discusses the impact of advancements in medical technology and the critical role of continuous communication within care teams. Tune in to learn more about optimizing care for thalassemia patients and the hopeful future of treatment options. 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.
  • Unlocking Nutrition Secrets for Hemolytic Anemias - Part 2 23.12.2024 22min
    On this episode of Thal Pals, NinaMaria concludes our two-part series on nutrition with guest Tamara Schryver, a nutrition scientist and president of the Thrive with Pyruvate Kinase Deficiency Organization. They dive into the roles of antioxidants for those with hemolytic anemias, the controversial debate over vitamin A and E supplements, and the significance of a balanced diet. They also discuss the importance of physical activity for individuals with Thal and PKD, and how dietitians and healthcare providers can collaborate to create effective health plans.   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.  

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