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Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.
At the University of South Florida College of Medicine 2010 Commencement, on May 6, in Tampa, FL, Nygel Lenz, an advocate and leader in the ataxia community, received one of two Dean's Awards presented by USF Medical Dean Dr. Stepehn Klasko. Lenz spoke at a USF Health forum last fall about the challenges of living with Friedrieich's ataxia, a rare neuromuscular disorder. Friedreich's affects the body's ability to balance, as well as causing muscle weakness and other problems. Lenz was presented with the award "in recognition that patients are our best teachers".
FARA is proud to share the video of the address of Billy Tauzin, President and CEO of the Pharmaceutical Research and Manufacturers of America (PhRMA), at the PhRMA meeting on March 18th, 2010, The presentation includes a beautiful and moving tribute to Keith Andrus and his legacy that continues to drive us forward. Mr. Tauzin is a champion for FA, Keith Andrus and all individuals with rare diseases as he challenges his colleagues in the pharmaceutical industry to make therapeutics for rare disease a high priority.
Students wheel themselves to class in the North Branford High School hallway during the Open Your Heart fundraiser. Approx. 30 N.B.H.S. students and staff chose to be in a wheelchair during the school day on Friday. The purpose of the event is to heighten the school community's awareness of the challenges people with physical handicaps must endure throughout their daily lives.