This SCDAA Masterclass, a special episode of Cheat Codes, was recorded live at the Sickle Cell Disease Association of America, Inc. (SCDAA) 2025 Annual National Convention in Chicago and explores the portrayal of sickle cell disease in the media. Panelists share personal stories and discuss the importance of authentic representation, highlighting both the challenges and progress in raising awareness. The conversation emphasizes the power of storytelling to drive advocacy, reduce stigma, and humanize the experiences of those living with sickle cell disease. Listeners will hear insights from patients, filmmakers, and advocates on how media can shape public understanding and support for the sickle cell community. We also hear opening remarks from Brian Goff, CEO of Agios Pharmaceuticals.

Learn more about the Sickle Cell Disease Masterclass Series at https://scdaamasterclass.com/

To hear more episodes of Cheat Codes: A Sickle Cell Podcast, please visit https://www.bloodstreammedia.com/cheat-codes

In this powerful episode of Cheat Codes, Dr. Z and Dr. C sit down with Dr. Santosh Saraf, one of the leading experts on kidney disease in sickle cell, to break down why renal complications are so common yet often overlooked. Dr. Saraf walks listeners through the early warning signs, the importance of routine monitoring, and how albuminuria, creatinine, and cystatin C can signal kidney stress long before symptoms appear. The discussion explores how anemia, hemolysis, blood pressure, and even treatment choices influence long-term kidney health, along with emerging therapies that offer new hope for protection and repair. This is an essential conversation for anyone living with sickle cell disease or caring for someone who is.

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

Cheat Codes: A Sickle Cell 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.

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 fatigue to stigma to navigating complex care. Together, they explore how collaboration, shared education, and collective advocacy strengthen each individual movement. The episode offers hope, perspective, and a reminder that these rare-disease communities are stronger together.

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 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. Please speak with your healthcare professional before making any treatment decisions.

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. Host and guests featured in this episode have been compensated for their time.

In this episode of Cheat Codes, Dr. Z and Dr. C sit down with Dr. Nirmish Shah of Duke University for a deep dive into how technology, wearables, and patient-reported outcomes are transforming the way clinicians measure quality of life in sickle cell disease. Dr. Shah shares the evolution of his work tracking daily symptoms, passive data, and long-term trends, and explains how these insights can help predict complications, personalize care, and strengthen the patient–provider relationship. The conversation explores everything from AI-driven analytics to hospital-based monitoring, highlighting how data can support—not replace—the human side of medicine. This episode offers a fascinating look at the future of sickle cell care and the innovations shaping it today.

To hear the episode with Dr. Charles Jonassiant and Jude Jonassiant referenced in the episode, CLICK HERE.

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

Cheat Codes: A Sickle Cell 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.

In this episode of Cheat Codes, Dr. Sharl Azar joins the hosts to discuss his journey from Oregon to leading the sickle cell program at Mass General in Boston. Dr. Azar shares the pivotal moments that inspired his passion for hematology and advocacy, including his work on groundbreaking legislation to improve care for sickle cell patients in Massachusetts. The conversation highlights the importance of community, systemic change, and the lived experiences of patients. Listeners will be inspired by Dr. Azar's commitment to equity, collaboration, and building a brighter future for those affected by sickle cell disease.

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

Cheat Codes: A Sickle Cell 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. Host and guests featured in this episode have been compensated for their time.

On this episode, Dr. Z and Dr. C welcome Shayan Siddiqui, founder of MiCaringHeart, to discuss his impactful work supporting sickle cell patients in Detroit. Shayan shares how his family's experiences inspired initiatives like Cabs for Kids, providing transportation to medical appointments, and Outsmart, offering free tutoring for children with chronic illnesses. The conversation highlights the challenges of healthcare access and the power of community-driven solutions.

For more information about MiCaringHeart, visit https://www.micaringheart.com/

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

Cheat Codes: A Sickle Cell 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. Host and guests featured in this episode have been compensated for their time.

In this special episode of Cheat Codes, Dr. Z and Dr. C hand the co-hosting mic to Dr. Julie Kanter for a lively walk through the history of the National Alliance of Sickle Cell Centers (NASCC) annual meetings. Alongside Dr. Sophie Lanzkron, Dr. Francis Coyne, and Dr. Alexis Leonard, they revisit key moments from 2022's belly-dancing dinner to 2025's record-breaking Vermont gathering. The conversation covers how NASCC consensus topics like pain management, iron overload, gene therapy readiness, and defining a "sickle cell specialist" have evolved year-to-year. Packed with behind-the-scenes stories, professional insights, and a look at NASCC's growing impact, this episode captures how a community of experts is shaping the future of sickle cell care.

For more information on the National Alliance of Sickle Cell Centers (NASCC), please visit: https://sicklecellcenters.org/

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

Cheat Codes: A Sickle Cell 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. Host and guests featured in this episode have been compensated for their time.

In this Rising Star episode from the NASCC meeting in Stowe, Vermont, Dr. Z and Dr. C spotlight Dr. Alyssa Schlenz, a psychologist transforming sickle cell care through early developmental screening and neuropsychological support. Dr. Schlenz shares her journey into the field, the critical role of prevention and early intervention, and the unique challenges faced by patients with neurodevelopmental disorders. She explains how routine, relationship-based screenings can identify issues early, reduce stigma, and improve long-term outcomes. This inspiring conversation highlights the power of psychology in comprehensive sickle cell care and the promising future being shaped by dedicated new leaders.

SHOW DESCRIPTION

Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.