Click here to watch archived live stream of symposium
The annual scientific symposium hosted by by FARA and USF was live streamed for the first time, with more than 900 views via social media
Tampa, FL (Sept. 7, 2012) – Scientists, clinicians and patients gathered at the USF Health Center for Advanced Medical Learning and Simulation (CAMLS) in downtown Tampa Sept.6 to share research insights and energize the search for a cure for Friedreich’s ataxia and related disorders.
The fourth annual scientific symposium “Understanding a Cure” was held Thursday eveniug, Sept. 6, at USF Health CAMLS in downtown Tampa. The symposium was hosted by Friedreich Ataxia Research Alliance (FARA) and the USF Ataxia Research Center (ARC), and included a tour of CAMLS.
This year, for the first time, the scientific symposium was live streamed through the FARA Facebook page, with opportunities for visitors to join the discussion long distance. To connect to the archived live stream and learn about cutting edge research advances in Friedreich’s ataxia, visit: http://www.facebook.com/CureFA/app_196506863720166 . A Facebook account is not needed to join.
Friedreich’s ataxia is a rare, debilitating neuromuscular disorder. Symptoms, typically emerging between ages 5 and 15, often progress to severe disability and include the following: loss of coordination and muscle weakness that leads to wheelchair use, energy deprivation and fatigue, vision impairment, hearing loss, slurred speech, aggressive scoliosis, diabetes, and life-shortening cardiac disease. There is not yet an approved treatment or a cure.
“This year’s Friedreich’s Ataxia Symposium built upon the momentum of the last three years by highlighting some of the most promising discoveries yet from leading researchers in the field,” said Theresa Zesiewicz, MD, professor of neurology and director of the University of South Florida Ataxia Research Center, who moderated the symposium. “The opportunity for patients who could not be with us in person to join the interactive symposium in real-time via Facebook generated a lot of excitement. We’ve had some lively discussions.”
Symposium speakers
Symposium speakers included Helene Puccio, PhD, research director for INSERM, Department of Translational Medicine and Neurogenetics, Institute of Genetics and Molecular and Cellular Biology (IMCBG) in Illkirch, France. Dr. Puccio’s laboratory develops animal and cell models to help understand the pathophysiology of Friedreich’s ataxia and the function of frataxin, a protein severely deficient in people with Friedreich’s ataxia. The preclinical models are used by Puccio and other researchers worldwide searching for potential new treatment approaches to ataxias, including gene replacement therapy.
Pediatric cardiologist R. Mark Payne, MD, professor of pediatrics and medical and molecular genetics director at Wells Center for Pediatric Research-Indiana University School of Medicine, shared his expertise on cardiomyopathy, or deterioration of heart muscle, related to Friedreich’s ataxia. Dr. Payne conducts research on heart disease caused by mitochondrial defects.
Guy Miller, MD, PhD, CEO of Edison Pharmaceuticals, Inc., spoke about advances in developing drugs to treat mitochondrial diseases that share a common feature – defects in how the body makes and regulates energy metabolism.
Kyle Bryant, FARA ambassador
FARA President Ron Bartek and Jennifer Farmer, FARA executive director, addressed progress nationwide in the research and management of Friedreich’s ataxia.
A highlight of the program was a panel discussion in which patients talked about overcoming the daily challenges of living with Friedreich’s ataxia.
Stephen Klasko, MD, CEO for USF Health and dean of the Morsani College of Medicine, welcomed symposium participants, and Clifton Gooch, MD, chair of neurology at USF Health, provided closing remarks.
USF is one of 11 sites included in FARA’s Collaborative Clinical Research Network, an international network of centers that share data and resources to advance treatments and clinical research for people with Friedreich’s ataxia.
About USF Health
USF Health is dedicated to creating a model of health care based on understanding the full spectrum of health. It includes the University of South Florida’s colleges of Medicine, Nursing, Public Health and Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. Ranked 34th in federal research expenditures for public universities by the National Science Foundation, the University of South Florida is a high impact global research university.
About The Friedreich’s Ataxia Research Alliance (FARA)
FARA is a non-profit organization dedicated to curing FA through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. For more information, go to www.curefa.org.
