Replay: International Legends of Sickle Cell: Professor Clarisse Lobo & Dr. Kleber Fertrin
Cheat Codes: A Sickle Cell Podcast
Release Date: 10/24/2023
Learnings from the Red Cell Revolution
Cheat Codes: A Sickle Cell Podcast
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,...
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Health Related Quality of Life Metrics & Health Outcomes in SCD
Cheat Codes: A Sickle Cell Podcast
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,...
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Rising Stars in Sickle Cell: Dr. Sharl Azar
Cheat Codes: A Sickle Cell Podcast
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...
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Driving Change: MiCaringHeart & the Fight for Sickle Cell Care
Cheat Codes: A Sickle Cell Podcast
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 SHOW DESCRIPTION Cheat Codes is intended for patients,...
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‘So What Did I Miss?’: A Recap of the 2023/2024 NASCC Meeting
Cheat Codes: A Sickle Cell Podcast
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...
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Rising Stars in Sickle Cell: Dr. Alyssa Schlenz
Cheat Codes: A Sickle Cell Podcast
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...
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Good Sickle Cell Care
Cheat Codes: A Sickle Cell Podcast
In this live episode from the NASCC meeting in Stowe, Vermont, Dr. Z and Dr. C are joined by a powerhouse panel: Dr. Payal Desai, Dr. Seethal Jacob, Dr. Pat McGann, and Dr. Andy Ellner to unpack what truly defines great sickle cell care. The group explores the importance of comprehensive, continuous, and patient-centered models, from inpatient to outpatient settings, pediatrics to adulthood. They discuss integrating technology, clinical trials, and multidisciplinary teams to improve quality of life and prevent long-term complications. It’s an insightful look at how collaboration, innovation,...
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History & Founding of NASCC
Cheat Codes: A Sickle Cell Podcast
In this episode of Cheat Codes, Dr. Z and Dr. C sit down with Dr. Julie Kanter, Dr. Sophie Lanzkron, and Dr. Marsha Treadwell to spotlight the National Alliance of Sickle Cell Centers (NASCC). They explore how NASCC came to life, its mission to unite multidisciplinary teams, and its role in setting consensus guidelines for sickle cell care. From building a national registry to fostering collaboration between clinics, community organizations, and patients, the conversation captures a pivotal movement toward consistent, high-quality care nationwide. Listeners will hear how NASCC is shaping the...
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Building Community in Patient Advocacy - One Warrior at a Time
Cheat Codes: A Sickle Cell Podcast
In this episode of Cheat Codes, Dr. Z and Dr. C are joined by renowned advocates TaLana Hughes and Cassandra Trimnell to explore what “the sickle cell community” truly means. They discuss how patients, caregivers, providers, and allies form interconnected, and often overlapping, communities that bring hope, support, and change. From building trust to celebrating wins, the conversation highlights the power of connection, the importance of access to information, and how to find your “tribe” in the sickle cell space. Whether local or global, online or in person, community remains the...
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Sickle Cell Advocacy: Stories, Struggles, and Self-Care
Cheat Codes: A Sickle Cell Podcast
On this episode of Cheat Codes, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, is joined by sickle cell advocates Teonna Woolford, Cassandra Trimnell, and Rae Blaylark discuss the challenges and rewards of sickle cell advocacy. They delve into personal journeys, the nuances of advocacy, and the importance of self-care. The conversation highlights the power of community, the significance of setting boundaries, and the need for therapeutic support. The advocates also reflect on the impact of their work and offer advice for the next generation of sickle cell...
info_outlineThis episode of Cheat Codes is our first bilingual podcasting experience. In the first half of the episode, Dr. Z and Dr. C speak with Professor Clarisse Lobo and Dr. Kleber Fertrin in English about their experience with sickle cell in Brazil. In the second half, we hear from them in their native Portuguese language.
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.
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 guests featured in this episode have been compensated for their time.