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.

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.

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.

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.

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.

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.

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.

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.