Thal Pals: The Alpha Beta Revolution
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.
Episodes
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. ...
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 a...
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 pati...
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 highlig...
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 DES...
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...
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 phys...
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 deeper into these topics.
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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...
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 M...
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 Pra...
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...
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 d...
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 impa...
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 inte...
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 update...
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...
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 inte...
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...
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 provi...
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