Summary
Overview
Physician-scientist David Fagenbaum shares his incredible story of nearly dying five times from a rare disease called Castleman disease, discovering his own life-saving treatment through off-label drug research, and founding EveryCure—a nonprofit using AI to match existing FDA-approved drugs with diseases they weren't originally designed to treat. His journey from Georgetown football player to medical pioneer demonstrates how repurposing existing medications could save countless lives while addressing the systemic failures in pharmaceutical research.
From Football to Medicine: Early Life and Mother's Cancer
David grew up in Raleigh, North Carolina as the son of an orthopedic surgeon who worked with the NC State football team, which sparked his love for football. He was a dedicated athlete who tracked his performance obsessively from age 10, eventually playing quarterback at Georgetown. His life trajectory changed dramatically when his mother was diagnosed with glioblastoma brain cancer just weeks into his freshman year, shifting his focus from sports medicine to finding treatments for diseases like hers.
- David's father was an orthopedic surgeon for NC State football, leading David to fall in love with the sport
- As a 10-year-old, David obsessively tracked his athletic performance with posters on his wall measuring speed and throwing distance
- His mother was diagnosed with glioblastoma just weeks after he arrived at Georgetown
- She survived 15 months after diagnosis, passing away during his sophomore year
- David promised his mother he would dedicate his life to finding treatments for patients like her
" She pointed to her head and she looked at us and she said chiquita banana lady "
" The last thing I ever told her. I said, mom, I'm going to be okay. And I'm going to dedicate my life to trying to find treatments for patients like you. "
First Illness: Nearly Dying from Castleman Disease
In his third year of medical school at Penn, David began experiencing extreme fatigue, swollen lymph nodes, and fluid retention. Within weeks, he went from delivering babies to being hospitalized with multiple organ failure. He was diagnosed with Castleman disease, a rare condition where the immune system attacks vital organs. Over six months, he nearly died five times, received seven different chemotherapies simultaneously, and gained 100 pounds of fluid while unconscious in the ICU.
- David noticed extreme fatigue, enlarged lymph nodes, and fluid around his ankles while on an OBGYN rotation
- Emergency room doctors told him his liver, kidneys, and bone marrow were shutting down
- He gained 100 pounds of fluid, went blind in one eye from retinal hemorrhage, and was on dialysis
- A friend accidentally hit him in the head with a stethoscope, nearly causing a fatal brain hemorrhage due to his critically low platelet count
- His father spent every night sleeping on a hospital couch by his bedside
" I remember in my brain, I thought to myself, I'm like, it doesn't matter because I'm about to die. And I'm like, why did I think that? "
" All those three years that I was dying from this thing and all those five times I said goodbye to my family, like, it was in that CVS. And I just never knew it. "
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