Those attending PRIM&R’s Advancing Ethical Research conference this week were able to hear from Dr. David Fajgenbaum, a physician and also the author of Chasing My Cure. Fajgenbaum was in medical school when he first fell seriously ill, with what was eventually diagnosed as idiopathic multicentric Castleman disease. His experience, which included nearly dying five times, pushed him to lead the charge to find a cure for his condition. His was one of the many rare diseases that had no approved treatments; he simultaneously became investigator, patient, and study subject.
His story was recounted in a 2017 New York Times article (UAMS’ own Dr. Frits van Rhee is quoted in it as well) and in a 2016 Science article. He is now involved in something called the CORONA project, a database collating information about treatments given to COVID patients.