A symposium focused on the rare genetic disease Friedreich’s ataxia, titled, “Understanding Energy for A Cure“, will gather some of the most prominent researchers and disease experts under one roof and help bridge the communication gap between patients and reliable sources of information and updates on FA. The event is hosted by the University of South Florida (USF), Friedreich’s Ataxia Research Alliance (FARA) and the USF Ataxia Research Center, and will be held on Thursday, September 17, 2015, between 5:00 to 8:30 p.m. at the USF Marshall Student Center Ballroom, USF Cedar Circle, Tampa, FL 33620. Entrance to the event is complimentary and is open to the public, and will also be attended by supporters of the FARA Energy Ball gala, held on Saturday, Sept. 19.
While this is not the first time for USF hosts an FA symposium, this year’s event will feature a panel discussion with a number of biotechnology and pharmaceutical industry leaders covering new clinical studies on drugs and gene therapy for Friedreich’s ataxia. These esteemed panelists include key representatives from Agilis Biotherapeutics, LLC; Horizon Pharma, plc; Reata Pharmaceuticals Inc; and Retrotope, Inc. The companies were invited for their collaborative relationship with FARA and academic institutions to shed light on ongoing and planned research programs aimed at enhancing quality and longevity for those afflicted with Friedreich’s ataxia, while discovering and developing treatments that eliminate disease symptoms. Patients and families affected by FA will be coming to USF from all over the country for the opportunity to share their experiences and opinions on the search for a treatment for FA.
Those who cannot attend the symposium can watch the live broadcast through Ustream’s CureFA channel and even have an opportunity to join the discussion remotely. Tune in by visiting their website on Sept. 17 at 6 p.m. EST. A Ustream account or membership is not needed to join.
“Understanding Energy for A Cure” will be hosted by professor and chair of the Department of Neurology in the USF Health Morsani College of Medicine, Dr. Clifton Gooch. Some of the key speakers invited to the event are Theresa Zesiewicz, MD, professor of neurology and director of the USF Ataxia Research Center, who will be updating attendees on the university’s FA initiatives. FARA President Ron Bartek and Jennifer Farmer, FARA Executive Director, will give an overview of progress nationwide in research.
Featured speaker Sanjay Bidichandani, MBBS, PhD, is the chair of pediatric medical genetics and professor of pediatrics and biochemistry and molecular biology at the University of Oklahoma College of Medicine and member of the FARA Board of Directors. He will be discussing today’s lineup of development stage treatments for Friedreich’s ataxia. He was also part of the group that discovered the gene for FA and, over the last 15 years, his research has helped characterize the disease’s genetic and epigenetic defects.
USF Health’s Dr. Gooch will also participate in a question-and-answer session on patients’ experiences of living with Friedreich’s ataxia and participating in clinical trials for the disease.