On October 20, 2012, 160 patients, family members and friends attended our 6th Annual Patient Meeting at the Philadelphia Marriott Courtyard Downtown. Our distinguished speakers were Raphael E. Pollock, MD, PhD (MD Anderson Cancer Center), Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center), Dina C. Lev, MD (MD Anderson Cancer Center), James Church, MD (Cleveland Clinic) and Benjamin Alman, MD (University of Toronto).
Subjects discussed included tumor biology and current treatments, the ongoing Sorafanib (Nexavar) demoid study, the activity of Nefapam in desmoid tumors, beta catenin mutations in desmoids and treatment of desmoids in FAP.
Kevin Reilly, a former NFL player whose career with the Philadelphia Eagles was cut short by an arm and shoulder amputation from a desmoid tumor, gave a talk inspiring us to move ahead with courage.
And definite highlights were two speeches given by celebrity Rosie O’Donnell at both the Patient Meeting and Running for Answers. With her characteristic humor she gave a lighter perspective to our plight as desmoid patients and hope for the future through raising awareness and funding for research.
Dr. Mehmet Oz of the famed Dr. Oz show sent a special video to play at the meeting where he expressed his support of DTRF and his desire to build awareness for the need to support desmoid tumor research.
The patient breakout sessions allowed for closer connections and commiserating as we could share with each other and also ask questions of the physicians and researchers. It was an informative and inspiring day for all as we were renewed in our quest for a cure and uplifted for our journeys ahead.
Check out pictures from this special day here!