Thal Pals: The Alpha Beta Revolution
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.
Episodes
REPLAY: Thalassemia Myth-Busting: Part 1
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
All in the Family: Living with Thalassemia Together
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 Radhi
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. T
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
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 fatigu
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 a
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 consider
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 fatigu
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 w
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, an
Thalassemia Myth-Busting: Part 2 – Complications, Exercise, & Transfusions
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
Thalassemia Myth-Busting: Part 1 – Fatigue, Hemoglobin & Iron Levels
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
Navigating Fertility, Pregnancy, & Parenthood with Thalassemia
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
Breaking the Silence: Thalassemia, Stigma & Strength in the Arab Community
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.
Transitioning with Thal: From Pediatric to Adult Care
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 th
A Legacy of Hope: The Cooley's Anemia Foundation Journey
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
Cultural Stigmas and Unity in the Thalassemia Community
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 empow
Life with Thalassemia: A Mother's Story
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 th
Mentors and Milestones: Inspiring the Next Generation of Hematologists
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.
Building the Perfect Thalassemia Care Team: Insights from Dr. Sujit Sheth
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 t
Unlocking Nutrition Secrets for Hemolytic Anemias - Part 2
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
Navigating Nutrition for Hemolytic Anemias - Part 1
On this episode of Thal Pals, NinaMaria hosts Tamara Schryver, president of the Thrive with Pyruvate Kinase Deficiency Organization. They discuss the importance of nutrition for patients with hemolytic anemias such as thalassemia and PKD. Tamara offers practical dietary tips and emphasizes the significance of nutrient-dense foods and vitamins. Stay tuned for the next episode, where they delve deep
Spreading the Word: Lab Tests – Part 2
On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain how MRI is used to measure iron accumulation in vit
Understanding Lab Tests: Hemoglobin and Ferritin Explained – Part 1
On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferritin, describing its function, the importance of tr
Live in Atlanta: Thriving with Thalassemia
On this episode of Thal Pals we're live in Atlanta, Georgia for the 2024 Cooley's Anemia Foundation's 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals, opens with a heartfelt introduction, followed by
Iron Will – Management of Iron Overload
On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emphasizes the need for regular monitoring and patien
Cooley's Care Walks
On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The episode covers ways to get involved, the impact of
Introducing a New Thal Pal
On this episode, we reintroduce you to NinaMaria Badalamenti as our new co-host of Thal Pals. NinaMaria is a patient advocate who has previously appeared on the show. Alongside Dr. Kevin Kuo, the two discuss what's new in 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
Replay: Cooley's Anemia Foundation Family Conference: A Teen Conversation
On this episode we're live in Los Angeles, California from the Cooley's Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia. To learn more about Cooley's Anemia Foundation, click this link. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients
Replay: Dr. Nica Cappellini - Mother of Thalassemia
Dr. Kevin Kuo and Laurice Levine talk to the "mother of Thalassemia" Dr. Nica Cappellini on today's show. 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, Thal Pals strives to provide listeners with critical education, the latest scientific updates, a
Thalassaemia International Federation Guidelines
On this episode, we speak with Dr. Androulla Eleftheriou, the Executive Director of the Thalassaemia International Federation as well as Dr. Khaled Musallam, Chief Research Officer at the Burjeel Hospital at Burjeel Medical City in Abu Dhabi, UAE. We discuss the Thalassaemia International Foundation guidelines on non-transfusion dependent thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta Rev
Cooley's Anemia Foundation Family Conference: A Teen Conversation
On this episode we're live in Los Angeles, California from the Cooley's Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia. To learn more about Cooley's Anemia Foundation, click this link. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients
Thalassemia: Perspectives from Thailand with Dr. Vip Viprakasit
SHOW NOTES FOR PODCAST PLAYERS: On this episode, Dr. Kevin Kuo sits down with Suwit Sumponpan, a medical science liaison working with Agios Pharmaceuticals and professor Vip Viprakasit, M.D. to discuss treating thalassemia internationally. Note: a portion of this interview is conducted in Thai. For the English portion, please see the time in the show notes. SHOW DESCRIPTION Thal Pals: The Alpha
Managing Thalassemia While Working Full-Time
On this episode, host Laurice Levine sits down with news producer and thalassemia patient NinaMaria Badalamenti to discuss working a full-time job while managing her disease. 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, Thal Pals strives to provide l
Generations & Thalassemia
On this episode, host Laurice Levine speaks with patient advocates Ralph Colasanti, Rucha Shah and NinaMaria Badalamenti about how different generations of patients have dealt with managing their 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 ep
Disease Burden
On this episode, Dr. Kevin Kuo and Laurice Levine are recording in New Orleans where they take an existential dive into the concept of "disease burden" in 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, Thal Pals strives to provide listener
Dr. Nica Cappellini - Mother of Thalassemia
Dr. Kevin Kuo and Laurice Levine talk to the "mother of Thalassemia" Dr. Nica Cappellini on today's show. 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, Thal Pals strives to provide listeners with critical education, the latest scientific updates, and
LIVE in New Orleans: A Red Cell Revolution
We're LIVE from New Orleans, Louisiana! Listen to our live podcast panel featuring members of the sickle cell, pyruvate kinase deficiency, and thalassemia communities and leading KOL's in each field. We are proud to introduce the Red Cell Revolution! The Red Cell Revolution is an Agios patient advocacy movement that is driven by a relentless desire to find common ground with these communities and
Replay: Merula & Dina Steagall: Managing Thalassemia as a Family
FLASHBACK ALERT! #Thalassemia is a family affair. Join us in revisiting one of our favorite #ThalPal episodes "Merula & Dina Steagall: Managing Thalassemia as a Family" Merula, Founder of Brazilian Blood Cancer Society (ABRALE) and Thalassemia major patient, is joined by her daughter Dina as they share their family's journey. Merula is the Founder of Brazilian Blood Cancer Society (ABRALE). https
A chat with our hosts, Dr. Kuo and Laurice
On this episode, hosts Dr. Kevin Kuo and Laurice Levine take a deeper dive into their respective journeys 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, Thal Pals strives to provide listeners with critical education, the latest sci
Shirin Taki, Thalassemia Patient Advocate
On this episode, hosts Dr. Kevin Kuo and Laurice Levine welcome Thalassemia patient and advocate Shirin Taki to discuss her journey with the disease as well as her experience navigating the Canadian healthcare system. 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. E
Merula & Dina Steagall: Managing Thalassemia as a Family
Merula Steagall is a manager, mother, thalassemia major patient, creator of important social projects and, especially, an innovator. She is joined by her daughter Dina Steagall as they share their family's journey with thalassemia. Merula is the Founder of Brazilian Blood Cancer Society (ABRALE). https://www.abrale.org.br SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended
Cooley's Anemia Foundation
On this episode your host, Dr. Kevin Kuo welcomes guest host Laurice Levine as they speak with Ralph Colasanti who is the executive president of the Cooley's Anemia Foundation. For patient resources you can visit Cooley's Anemia website: https://www.thalassemia.org/ SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater comm
Introducing Thal Pals: The Alpha Beta Revolution
Introducing Thal Pals: The Alpha Beta Revolution Podcast. On this episode we meet your host, Dr. Kevin Kuo. His guests are Laurice Levine and Keely Gilroy. Laurice is a patient advocate living with Thalassemia and Keely is a Thalassemia medical director from Agios Pharmaceuticals. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the
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