Friedreich’s Ataxia Research Alliance and University of South Florida host Sept. 5th event
Tampa, FL (August 28, 2013) – Leading scientists and clinicians searching for a treatment for Friedreich’s ataxia (FA) and related disorders will gather for the fifth annual scientific symposium “Understanding a Cure,” 6 to 8 p.m., on Thursday, Sept. 5, at the USF Health Center for Advanced Medical Learning and Simulation, or CAMLS, 124 South Franklin Street, Tampa, FL 33602.
The symposium, free and open to the public, is hosted by the Friedreich’s Ataxia Research Alliance (FARA) and the University of South Florida (USF) Ataxia Research Center. Speakers will share the latest advances in research — from harnessing stem cell technology to investigating the effectiveness of a new medication.
The event routinely draws patients with Friedreich’s ataxia and their families 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, held on Saturday, Sept. 7.
For the second year in a row, the scientific symposium will be broadcast through the FARA Facebook page, with opportunities for visitors to join the conversation long distance. To watch the presentations in real-time, visit https://www.facebook.com/CureFA/app_196506863720166 on Sept. 5 at 6 p.m. EST. A Facebook account/membership is not needed to join.
Friedreich’s ataxia is a rare, debilitating neuromuscular disorder. Symptoms, emerges either between ages 5 and 15 or in adulthood and can 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.
At last year’s symposium, Guy Miller, MD, PhD, CEO of Edison Pharmaceuticals Inc., announced that USF would lead a multisite study testing the safety and effectiveness of a potent antioxidant, the investigational drug known as EPI-743, for patients with Friedreich’s ataxia. Dr. Miller will return this year to report on the progress of that ongoing Edison-funded clinical trial, led by Theresa Zesiewicz, professor of neurology at USF Health.
Dr. Zesiewicz will join the discussion about the EPI-743 trial and update attendees on several other studies being conducted by the USF Ataxia Research Center.
Symposium speakers will include Mirella Dottori, PhD, principal investigator and senior research fellow at the Centre for Neuroscience Research, University of Melbourne, Australia, who will talk about Friedreich’s ataxia treatments with stem cells. Using skin cells from Friedreich’s ataxia patients converted into pluripotent stem cells, Dr. Dottori’s team recently induced these stem cells to generate the specific cell types that degenerate in Friedreich’s ataxia, including heart and nerve cells.
FARA President Ron Bartek and Jennifer Farmer, FARA executive director, will address progress nationwide in the research and management of Friedreich’s ataxia.
Dr. Zesiewicz will moderate a question-and-answer session on patients’ perspectives of living with ataxias, and Clifton Gooch, MD, chair of neurology at USF Health, will provide closing remarks.
USF is one of 10 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.
For more information, please visit http://www.curefa.org/energyball/sep5.html or call (813) 974-5909.
– About USF Health –
USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a global research university ranked 50th in the nation by the National Science Foundation for both federal and total research expenditures among all U.S. universities. For more information, visit www.health.usf.edu
– 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.
Video produced by USF Health Communications
