The University of South Florida (USF) will again bring together leading researchers and patients searching for a treatment for Friedreich's ataxia and related disorders at the seventh annual scientific symposium "Understanding Energy for A Cure." The symposium will be held 5 to 8:30 p.m., Thursday, Sept. 17, at the USF Marshall Student Center Ballroom, USF Cedar Circle, Tampa, FL 33620.
The event, free and open to the public, is hosted by the Friedreich's Ataxia Research Alliance (FARA) and the USF Ataxia Research Center.
For the first time, the symposium will include a panel discussion with several biotechnology and pharmaceutical industry leaders about new clinical trials testing drugs and gene therapy for Friedreich's ataxia. The panelists include representatives from Agilis Biotherapeutics, LLC; Horizon Pharma, plc; Reata Pharmaceuticals Inc; and Retrotope, Inc. The companies collaborate with FARA and academic institutions to focus on research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and lead to treatments that eliminate symptoms.
Patients with Friedreich's ataxia and their families come to USF from across the country to share their thoughts and perspectives about energizing the search for a cure. The event will also be attended by supporters of the FARA Energy Ball gala, held on Saturday, Sept. 19.
The scientific symposium will again be broadcast through the Ustream's CureFA channel, with opportunities for visitors to join the conversation long distance. To watch the presentations in real-time, visit http://www.ustream.tv/channel/curefa on Sept. 17 at 6 p.m. EST. A Ustream account/membership is not needed to join.
Friedreich's ataxia is a rare, progressive neurodegenerative disease affecting children and adults for which there is currently no approved therapy. Symptoms include neurologic, cardiac, orthopedic, and endocrine dysfunction.
The symposium will be hosted by Clifton Gooch, MD, professor and chair of the Department of Neurology in the USF Health Morsani College of Medicine. Theresa Zesiewicz, MD, professor of neurology and director of the USF Ataxia Research Center, will update attendees on the Friedreich's ataxia initiatives at USF, one of 10 sites in the international FARA Collaborative Clinical Research Network.
FARA President Ron Bartek and Jennifer Farmer, FARA Executive Director, will give an overview of progress nationwide in Friedreich's ataxia research.
Featured speaker Sanjay Bidichandani, MBBS, PhD, 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, will talk about the pipeline of investigational treatments for Friedreich's ataxia. He was part of the group that discovered the gene for Friedreich's ataxia and, over the last 15 years, his research has helped characterize the disease's genetic and epigenetic defect.
USF Health's Dr. Gooch will moderate a question-and-answer session on patients' perspectives of living with Friedreich's ataxia and clinical trial participation.
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