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College student dedicated to curing his own cancer speaks at OHSU

Josh Sommer will discuss how individual patients, patient advocacy groups can help expedite research breakthroughs, accelerate their own cures


Josh Sommer will discuss his campaign to find a cure for a rare bone cancer of the head and spine called clival chordoma, and his belief that patients can and should play an active role in bringing about treatments for their own conditions.

Josh was diagnosed with clival chordoma in 2006 while attending Duke University. Determined to find his own cure, Josh volunteered for two years in an oncology lab at Duke. In 2008 he received a two-year Echoing Green Fellowship for Social Entrepreneurs for his pioneering work in bridging patient advocacy and research. 

Today Josh is executive director of the Chordoma Foundation, an organization he and his mom, Simone Sommer, M.D., founded to unite patients, doctors and scientists to accelerate treatments for chordoma, which typically is resistant to chemotherapy and radiation and is prone to multiple recurrences; the average survival after diagnosis is seven years.

“In a few short years, Josh has created a new culture by which patients interact with top researchers and pharmaceutical companies to accelerate research,” said Charles Keller, M.D., leader of Pediatric Cancer Biology Program in the Papé Family Pediatric Research Institute at OHSU Doernbecher Children’s Hospital, and a member of the OHSU Knight Cancer Institute and the Oregon Stem Cell Center at OHSU. “Josh exemplifies the need for personalized medicine, and the Chordoma Foundation has made possible amazing research in the United States and internationally that has resulted in high-profile, high-impact publications in the scientific journal CELL, among others.”

Josh is the inaugural speaker of the Miles Alpern Levin Lectureship, sponsored by the Miles Alpern Levin Initiative for Rhabdomyosarcoma Research and hosted by and hosted by the OHSU Knight Cancer Institute and the Pediatric Cancer Biology Program at Oregon Health & Science University Doernbecher Children’s Hospital.


Tuesday, April 26, at 4 p.m. 


OHSU Doernbecher Children’s Hospital, 11th floor, Vey Auditorium, 700 S.W. Campus Drive, Portland, OR 97239. The lecture will be streamed live online.


In addition to addressing the important role of patient advocacy he will focus on various issues and special challenges that are associated with cancer detection, diagnostics, prognostics and treatment of rare cancers; strategies to improve screening, scientific collaborations and interactions; and new technologies.

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