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Event Gathers World-Renowned Researchers and Community Leaders to Find a Cure for Rare Disease, Friedreich’s Ataxia

Tampa, Fla. (PRWEB) September 02, 2014

Scientists, physicians, patients, families, and community leaders will join together in Tampa Bay from September 4-6 for the Friedreich’s Ataxia Research Alliance’s (FARA) sixth annual Scientific Symposium and FARA Energy Ball Gala. The Energy Ball benefits FARA and the USF Ataxia Research Center in their pursuit of treatment and cure for the 15,000 people worldwide affected by the progressive neuromuscular disease Friedreich’s ataxia (FA).

“The annual gathering provides an excellent chance for scientists to discuss research developments, for patients and their families to be updated on advancements, and for those who care about FA to lend a supportive hand,” says Ronald Bartek, President of FARA.

FA is the most common of the inherited ataxias. Over the course of the disease, individuals develop balance issues often leading to full-time wheelchair use, impaired speech, hearing and vision loss, and ultimately, a shortened lifespan due to heart complications. Currently, there is no known treatment or cure for FA.

International leaders in FA research and the FA community will attend the Understanding Energy for a Cure Scientific Symposium on September 4 to discuss advancements in FA therapeutic approaches. Updates of ongoing drug discovery efforts, clinical trials, along with emerging treatments in the fields of gene therapy will be discussed.

Individuals who live with FA will also share their personal experiences as part of a unique patient panel. One panel, featuring Orlando, FL resident Natchez Hanson and Philadelphia, PA resident Kyle Bryant, will address questions on what it is like to participate in a clinical trial. Another panel, featuring Gibson City, Illinois resident Emily Young and Portland, OR resident Sam Bridgman, will discuss the daily challenges of living with FA, as well as the strength they’ve found in taking action to support research advancement.

On September 6, the FARA Energy Ball, chaired by Tampa Bay Lightning CEO, Tod Leiweke and his wife Tara Leiweke, will take place at the A La Carte Event Pavilion. ABC Action News anchor, Wendy Ryan will Emcee the event. A live auction, featuring exclusive getaways, will follow cocktails and dinner, and guests will be treated to a high energy performance from The Spazmatics. Last year, FARA dedicated over $3 million towards drug discovery, development and clinical research worldwide, due in large part to funds raised at the FARA Energy Ball of 2013.

“Acting alone, there is very little any of us can accomplish,” says Bartek. “Acting together, there is very little we will not accomplish!”

SCIENTIFIC SYMPOSIUM: The free event is being hosted at the University of South Florida (USF) Health’s Center for Advanced Medical Learning and Simulation (CAMLS). For more information and to watch a live broadcast, visit

FARA ENERGY BALL:For more information about the FARA Energy Ball or participate in the auction, please visit

About Friedreich’s Ataxia Research Alliance

The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501©(3), non-profit, tax-exempt 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 about FARA, visit them online at

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