“There was a really important moment in my own battle against Castleman disease,” Dr. Fajgenbaum says. “I went from hoping that things would work out and hoping that someone else would figure out a drug, to wanting to turn my hope into action.”

While in medical school, Dr. David Fajgenbaum spent months hospitalized in critical condition from idiopathic multicentric Castleman disease, an extremely rare disorder of the lymph nodes. The physician eventually sought a cure himself, spearheading a fresh approach to research and discovering a treatment that has put him into extended remission.

Today, David Fajgenbaum is co-founder and executive director of the Castleman Disease Collaborative Network and associate director, patient impact, for the Penn Orphan Disease Center, which has recently directed its attention to the novel coronavirus that causes COVID-19.

Cytokine storms are one of the most devastating effects of COVID-19. While such storms may sound like an unusual meteorological phenomenon, these storms are medical ones. Normally, cytokines regulate the human body’s immune system. When attacked by an infection, though, cytokines can be released in excessive amounts, leading to organ failure.

The Penn Orphan Disease Center in Philadelphia has moved quickly to study cytokine storms and the hyperactivation of the immune system. Dr. Fajgenbaum is leading that effort using a unique and innovative crowdsourcing approach to clinical research.

“The steps we’re taking right now against COVID-19 are right out of the same exact playbook that we used to figure out how to save my life,” Fajgenbaum tells CCC’s Chris Kenneally. “My book’s called Chasing My Cure, but really we should have probably titled it Chasing Our Cures, because thankfully the drug that I identified that’s saving my life, we’re also giving it to other patients, and it’s saving other patients’ lives as well.

“This process of dissecting a disease, searching for drugs that could be repurposed, and then tracking how they work, running clinical trials, this is exactly what we’ve done – I’m only alive today and being able to talk to you because of that playbook. And we hope that utilizing the exact same approach for COVID-19 is going to be really powerful.

“There was a really important moment in my own battle against Castleman disease,” Dr. Fajgenbaum adds. “That was after my fourth relapse, when I learned there were no more drugs in development and that if I didn’t get involved in research, that no one was going to identify a drug that could save my life. I went from hoping that things would work out and hoping that someone would figure out a drug to saying, to wanting to turn my hope into action by fighting back against this disease and by conducting research and doing the work myself.”

About Dr. Fajgenbaum


Dr. David FajgenbaumDr. David Fajgenbaum is a groundbreaking physician, scientist, disease-hunter, and bestselling author. One of the youngest individuals ever appointed to the faculty at Penn Medicine, David Fajgenbaum is the author of Chasing My Cure: A Doctor’s Race to Turn Hope into Action.


Author: Christopher Kenneally

Christopher Kenneally hosts CCC's Velocity of Content podcast series, which debuted in 2006 and is the longest continuously running podcast covering the publishing industry. As CCC's Senior Director, Marketing, he is responsible for organizing and hosting programs that address the business needs of all stakeholders in publishing and research. His reporting has appeared in the New York Times, Boston Globe, Los Angeles Times, The Independent (London), WBUR-FM, NPR, and WGBH-TV.
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