Young Investigator Draft grant recipient Dr. David Fajgenbaum pens book about his rare disease journey


For more than five years, Dr. David Fajgenbaum has been a friend, mentor, advisor, inspiration and partner to Uplifting Athletes and the Rare Disease Community.

Dr. Fajgenbaum was a recipient of one of the five research grants awarded at the inaugural Uplifting Athletes Young Investigator Draft in 2018. The research organization he helped launch, Castleman Disease Collaborative Network, which was a priority partner for our Young Investigator Draft initiative in both 2018 and 2019.

His vision as a researcher/scientist and passion to help others is infectious. Uplifting Athletes is extremely fortunate to have a close and personal relationship with Dr. Fajgenbaum.

“It’s been an honor to get to know David and to be able to call him a friend and a mentor,” said Uplifting Athletes Executive Director Rob Long, who was also a rare disease patient. “What he has accomplished, not only for the Castleman community, but the rare disease and medical community as a whole, cannot be understated.

“His humility and kindness are remarkable. We are proud to share David’s story to inspire others who have had the odds stacked against them.”

Dr. Fajgenbaum’s rare disease story is amazing. It has many layers and levels. A snapshot at a conference or as a guest speaker doesn’t do the depth and breadth of his journey justice.

So, Dr. Fajgenbaum added another bullet point to his already robust resume – book author.

Chasing My Cure: A Doctor’s Race To Turn Hope into Action by Dr. David Fajgenbaum is the inspiring memoir of a young doctor and former college football player who became a champion for people suffering from a rare, under-researched disease – all while battling his own.

Dr. Fajgenbaum’s memoir, released by Ballantine Hardcover, is available for sale starting September 10, 2019.

A former Georgetown quarterback nicknamed “The Beast,” David Fajgenbaum was also a force in medical school, where he was known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled over a condition they had yet to even diagnose; floating in and out of consciousness, Fajgenbaum prayed for the equivalent of a game day overtime: a second chance.

Miraculously, Fajgenbaum survived, but only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease—an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder.

When he relapsed on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment.

With the help of family, friends and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them; instead of waiting for the scientific stars to align, he proposed to align them himself.

“David Fajgenbaum, a self-proclaimed “rare disease quarterback,” shares with us his extraordinary story of assembling a team and a framework to conduct unprecedented collaborative research,” Georgetown University President Dr. John J. DeGioia said. “In his deeply personal memoir, he makes plain the urgency of hope, and explores how the human spirit might transcend suffering to inspire communities to take
 collective action against seemingly insurmountable odds.”

More than five years later and now married to his college sweetheart with a daughter, his hard work has paid off: a treatment that he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when forces of determination, love, family, faith and serendipity collide.

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