David Fajgenbaum, MD, MBA, MSc (Penn Med’13, WG’15) justifiably feels he is living in overtime ever since he had his last rites read to him five years ago. Speaking to alumni at a WCNY Speaker Series event on November 9, David shared where his life had been directed showing us a photo himself as a hulking quarterback during college. When his mother was diagnosed with cancer during his freshman year at Georgetown University, he refocused his life on training to become a doctor. The next year, his mother perished from cancer. His response was to create an organization Actively Moving Forward (with the same initials of his mother Anne Marie Fajgenbaum) to support other grieving young people.
After college, he completed a master’s degree in public health at Oxford University and then attended the University of Pennsylvania for medical school. During his third year of med school, David spent five months hospitalized with multiple organ system failures. He was finally diagnosed with idiopathic multicentric Castleman disease (iMCD), a deadly hematologic illness (more deadly than lymphoma, prostate cancer and breast cancer), where the immune system attacks and shuts down multiple vital organ systems. He had his last rites read, and needed a seven-agent combination chemotherapy regimen to survive.
Upon recuperation, David returned to medical school and helped with the development of a then newly funded rare disease center at UPenn. He suffered a relapse and nearly died. When the world’s experts could not answer basic questions about the disease, he decided to dedicate his life to advancing research and treatments for iMCD. In 2012, he co-founded the Castleman Disease Collaborative Network (CDCN) to accelerate research and treatment for iMCD. He also began conducting research into the disease during his last year of medical school.
CDCN has the advantage of David’s unique perspectiveas a patient of the disease he seeks to cure. David quickly observed that the greatest hurdles to finding a cure actually were not medical problems — they were business problems, such as lack of an overarching strategy, limited collaboration, and inefficient use of tissue samples and funding. He decided to attend Wharton and during his first year, relapsed for the fourth time. He had spent every moment in the previous 17 months working to advance research, along with dozens of other Castleman disease experts — but it still wasn’t enough. He told himself that, if he survived that relapse, he would turn outside the Castleman disease community for help to cure the disease. He immediately recruited Wharton classmates to get involved — “people who can get things done,” as he called his classmates and alumni. And feeling like he needed to live with no regrets because he didn’t know when the disease would return and kill him, he adopted his personal motto, “Think it, do it.”
Today, David is Research Assistant Professor of Medicine in the Division of Hematology/Oncology and Associate Director of the Orphan Disease Center at the University of Pennsylvania. You could say Penn Med hired him to cure his own disease. His foundation CDCN has connected over 5,000 patients and loved ones with 347 physicians, and is flipping the model of how research is done. In the traditional model, research organizations first raise money and then invite individual researchers to apply to use that funding according to how those researchers see fit. In contrast, CDCN built a community of experts from around the globe who were crowdsourced to develop an international research strategy, and recruited them to conduct prioritized projects to fulfill that strategy. CDCN is currently waiting for data to come back on four potentially breakthrough studies and is inviting individuals to contribute funding to enable the next five studies on CDCN’s expert-guided, patient-focused International Research Agenda.
Equally important, CDCN is changing the paradigm of how research and cures are approached for other diseases. Using the above model, CDCN is:
- Democratizing research — instead of allowing a fewresearchers to hoard samples from other researchers
- Engaging patients in the research process and helping them to feel less alone
- Generating clinically meaningful research data to help patients
About 95% of rare diseases don’t have a single approved treatment. David hopes that his approach will help to speed up new drug development and help to identify drugs already approved that may be effective for other diseases in need of treatments.
David truly could write a book about personal lessons learned:
- Helping others is therapeutic.
- Hear the clock, outwork your opponent. Think it. Do it. Three years ago, he thought of writing a book for grieving young adults and just did it. Its title is: Question the status quo, and change the game. Fight through adversity by staying positive.
- Know that it takes an army — a Wharton army. Some 200 MBA students donated, and more than 15 are active members of the CDCN Leadership Team. Experts identify studies, and the CDCN Leadership Team focuses on execution. For instance, Wharton classmates recently helped to negotiate with a pharmaceutical company to establish a collaborative research study of the largest sample set ever studied for Castleman disease.
- Find your Castleman disease. We all can change the world, but we’ve got limited time to do it.
David encouraged his listeners to find that thing that makes them passionate. If you haven’t yet “found your Castleman disease,” or you want to be a part of building a new model to cure Castleman disease and many other illnesses, David said, “We need you. We need your support.”
David is eagerly looking for anyone to help on many fronts, but most notably, fundraising to enable high-impact research studies. CDCN raised $200,000 this past year and held the Quest for a Cure Gala at Penn’s Jordan Medical Education Center on November 20. However, any donations and input are welcome, especially from Wharton alumni! Visit www.CDCN.org/wharton to donate or learn more about how you can help.