Episoder
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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 trends, and the use of MRI for accurate iron measurement. The conversation emphasizes the need for monitoring and understanding lab results in context with patients' overall health and lifestyle.
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 featured in this episode have been compensated for their time.
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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 a panel featuring Pranav Saha, Dr. Zahra Pakbaz, and Robert Mannino. Each shares their experiences balancing thalassemia with their personal and professional lives, emphasizing the importance of prioritizing health, being your own advocate, and following your dreams. The panel also discusses the value of learning from one's journey and from others, fostering a community that encourages thriving despite the challenges of 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 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 featured in this episode have been compensated for their time.
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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 patient-doctor collaboration, explaining the potential organ damage caused by excess iron. NinaMaria shares insights on managing one's health and the significance of patient education and communication. The episode highlights the various complications of iron overload, the role of liver and heart MRIs in monitoring, and the importance of adhering to chelation therapy to prevent severe health issues.
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 featured in this episode have been compensated for their time.
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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 fundraising, and the diverse activities surrounding these walks.
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 featured in this episode have been compensated for their time.
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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 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 featured in this episode have been compensated for their time.
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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, 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 guests featured in this episode have been compensated for their time.
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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 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 guests featured in this episode have been compensated for their time.
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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 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 guests featured in this episode have been compensated for their time.
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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, 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 guests featured in this episode have been compensated for their time.
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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 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.
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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 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.
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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 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 guests featured in this episode have been compensated for their time.
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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 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.
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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 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 guests featured in this episode have been compensated for their time.
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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 their treaters.
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. Kevin Kuo, Laurice Levine, Mike Callaghan, Cassandra Trimnell, Teonna Woolford, NinaMaria Badalamenti, Clarisse Lobo, Jill Welle, Tamara Schryver, Rae Blaylark, Ralph Colasanti, Rucha Shah, Alejandra Watson, Biree Andemariam, Charles Jonassaint, Sujit Sheth, Nirmish Shah have been compensated for their time.
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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://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
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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 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.
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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. 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.
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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 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.
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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 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 guests featured in this episode have been compensated for their time.
- Se mer
