USF ataxia Symposium2012

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					                            Media contact: USF Health Public Affairs
                                           Anne DeLotto Baier, (813) 974-3300 or

 Advances in ataxia research to be featured at USF Health’s
        innovative learning and simulation center
              Friedreich’s Ataxia Research Alliance and USF host Sept. 6th event

Tampa, FL (Aug. __, 2012) – Scientists, clinicians and patients will gather 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. This year, for the first time, the scientific symposium will be live streamed through
the Friedrich Ataxia Research Alliance (FARA) Facebook page, with opportunities for visitors to
join the discussion long distance.

The fourth annual scientific symposium “Understanding a Cure” will be held from 6 to 8 p.m.
on Thursday, Sept. 6, at USF Health CAMLS, 124 South Franklin Street, Tampa, FL 33602.
The symposium, free and open to the public, is hosted by FARA and the USF Ataxia Research
Center (ARC). At the pre-symposium poster session, from 5 to 6 p.m., attendees can learn about
new research on Friedreich’s ataxia and talk directly to investigators about the findings.

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 will build 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 USF Ataxia
Research Center, who moderates the symposium. “The opportunity for patients who cannot be
with us in person to join the interactive symposium in real-time via Facebook has generated a lot
of excitement. We’re looking forward to lively discussions.”

Symposium speakers will include 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,
will share his expertise on cardiomyopathy, or deterioration of heart muscle, related to
Friedreich’s ataxia. Dr. Payne conducts research on heart disease caused by mitochondrial

Guy Miller, MD, PhD, CEO of Edison Pharmaceuticals, Inc., will speak about advances in
developing drugs to treat mitochondrial diseases that share a common feature – defects in how the body
makes and regulates energy metabolism.

FARA President Ron Bartek and Jennifer Farmer, FARA executive director, will address
progress nationwide in the research and management of Friedreich’s ataxia.

Stephen Klasko, MD, CEO for USF Health and dean of the Morsani College of Medicine, will
moderate a panel discussion 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 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.

For more information about the upcoming symposium, please call (813) 974-5909.

                                         - 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) –

The Friedreich’s Ataxia Research Alliance is a non-profit organization dedicated to curing Friedreich’s
ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA
research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA
also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of
information that drive medical advances. For more information, go to

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