Replay: Merula & Dina Steagall: Managing Thalassemia as a Family
Thal Pals: The Alpha Beta Revolution
Release Date: 01/31/2023
Results from a Global Health Literacy Survey in Thalassemia
Thal Pals: The Alpha Beta Revolution
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...
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Building Connections - Live from the TIF Pan-American Conference!
Thal Pals: The Alpha Beta Revolution
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 SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution...
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Thalassemia Myth-Busting: Part 2 – Complications, Exercise, & Transfusions
Thal Pals: The Alpha Beta Revolution
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:...
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Thalassemia Myth-Busting: Part 1 – Fatigue, Hemoglobin & Iron Levels
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...
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Navigating Fertility, Pregnancy, & Parenthood with Thalassemia
Thal Pals: The Alpha Beta Revolution
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...
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Breaking the Silence: Thalassemia, Stigma & Strength in the Arab Community
Thal Pals: The Alpha Beta Revolution
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...
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Transitioning with Thal: From Pediatric to Adult Care
Thal Pals: The Alpha Beta Revolution
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...
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A Legacy of Hope: The Cooley's Anemia Foundation Journey
Thal Pals: The Alpha Beta Revolution
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...
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Cultural Stigmas and Unity in the Thalassemia Community
Thal Pals: The Alpha Beta Revolution
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,...
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Life with Thalassemia: A Mother's Story
Thal Pals: The Alpha Beta Revolution
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...
info_outlineFLASHBACK 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://www.abrale.org.br
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 voices from the Thalassemia community.
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.
Sponsored by Agios Pharmaceuticals