#4 The Doctor Who Cured Himself: David Fajgenbaum’s Mission to Treat Rare Diseases

On this episode of Curveball, host Scott Reich sits down with Dr. David Fajgenbaum—an immunologist, author, and professor at Penn. David’s story is nothing short of extraordinary: after losing his mother to brain cancer as a college student, he channeled his grief into community-building by founding a national support network for grieving students. But life threw him another, even more staggering curveball when, as a promising med student, he was suddenly struck by a rare and deadly condition: Castleman disease. Not only did David nearly die literally five times, but in the face of scant research and little hope, he set out to find his own cure—eventually repurposing an existing drug to save his life.

In this compelling conversation, David shares how adversity reshaped his life’s purpose, the importance of community in overcoming grief, and why he’s now leading a global push to find new uses for existing medicines through EveryCure. Whether you’re interested in medical innovation, resilience in the face of the unimaginable, or simply the power of human connection, you won’t want to miss this inspirational episode.

Listeners will Learn:

• David describes channeling his grief after his mother’s passing into community action through founding Actively Moving Forward (AMF). He discusses the key benefits and challenges of creating a support community around grief on college campuses.
• Scott and David discuss the importance of connection in coping with adversity, especially rare diseases.
• David was not only a med student but also a patient with a deadly, little-understood condition. The podcast delves into the lack of information and statistics available for many rare diseases.
• David took a radically proactive approach to his own medical crisis, ultimately discovering a repurposed drug that saved his life. Scott and David highlight that treatments for rare diseases are often found by persistently searching outside the box, like drug repurposing.
• EveryCure, the organization David co-founded, aims to systematically identify new uses for existing medicines. He discusses the potential impact this approach could have not just for rare diseases, but for health care in general.
• David talks about how facing his own mortality gave him “clarity of purpose” and shifted his values.
• Throughout the episode, there’s a recurring theme about turning personal curveballs into motivation for positive change.

Our Guest:

Dr. David Fajgenbaum

Key Moments:

(00:00) From College Athlete to Grief Advocate

(04:36) Connecting Through Shared Rare Disease Experiences

(08:35) Sudden, Severe Health Crisis and Survival

(09:56) Deadly Diagnosis and Finding a Cure

(14:08) Exploring American Dreams and Expectations

(20:24) Integrative Strategy for Medical Research Collaboration

(24:56) Innovative Approach to Drug Repurposing

(29:52) Searching for “Low-Hanging Fruit Medical Solutions"

(35:45) Collaborative Strategies for Medical Research & Fundraising

(37:29) Incentive Barriers in Scientific Data Sharing

(40:52) Focusing on Children's Happiness Over Achievements