Navigation Links
Event Gathers World-Renowned Researchers and Community Leaders to Find a Cure for Rare Disease, Friedreich’s Ataxia
Date:9/2/2014

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 http://www.curefa.org/energyball/sep4.html.

FARA ENERGY BALL:For more information about the FARA Energy Ball or participate in the auction, please visit http://www.curefa.org/energyball/sep6.html.

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 http://www.curefa.org.

Read the full story at http://www.prweb.com/releases/2014/09/prweb12139752.htm.


'/>"/>
Source: PRWeb
Copyright©2014 Vocus, Inc.
All rights reserved

Related medicine news :

1. New drug prevents spread of human prostate cancer cells
2. Witnessing, Experiencing Traumatic Events May Worsen Heart Disease
3. Antibody therapy prevents gastrointestinal damage following radiation exposure in mice
4. To prevent leukemias dreaded return, go for the stem cells
5. Rapid Asthma Treatment in ER May Prevent Admission
6. Report says new evidence could tip the balance in aspirin cancer prevention care
7. Drug May Prevent Pancreatitis After Digestive Procedure
8. Decision guide reduced uncertainty over breast cancer prevention, study finds
9. HIV Prevention Pill Cost-Effective for High-Risk Men: Study
10. Report outlines successes, challenges in cancer prevention efforts
11. Additional blood pressure screening may reduce incidence of CVD events and death by up to 3 percent
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:2/9/2016)... ... February 09, 2016 , ... URise Products ... newest mobility device, the StandUp Walker. Made entirely in the USA, the StandUp ... 50 years. , StandUp Walker’s novel patent-pending design offers 2-in-1 benefits of ...
(Date:2/9/2016)... ... 2016 , ... Establishment Labs, a global breast implant and medical technology company, ... of Directors. , “We are honored to welcome David to our Board ... Jose Chacon Quiros, CEO of Establishment Labs. "David’s knowledge and experience will be invaluable ...
(Date:2/9/2016)... ... February 09, 2016 , ... ... service to expand access to affordable hearing aids , increase industry transparency, ... individuals in the United States. , “For the average consumer, the hearing aid ...
(Date:2/9/2016)... (PRWEB) , ... February 09, 2016 , ... ... grout cleaning and sealing company , is proud to announce that many of ... superior levels of customer service. The hard surface restoration franchises received customer recognition ...
(Date:2/8/2016)... (PRWEB) , ... February 08, 2016 , ... ... launched its newly redesigned website, federallabs.org . The site houses a wealth ... license available federal technologies through the process called technology transfer (T2). As a ...
Breaking Medicine News(10 mins):
(Date:2/9/2016)... 2016 The new report "Global Blood Monitoring & Cardiac Monitoring Devices ... Consulting group reveals that global market for blood monitoring & cardiac ... expected to grow to US$ 24,830.1 million by 2019 at a ... America , Europe , Asia-Pacific ... and Africa . The three major ...
(Date:2/9/2016)... , Feb. 9, 2016  Johnson & Johnson ... Capital Markets Global Healthcare Conference on Tuesday, Feb. 23, ... Dominic Caruso , Vice President, Finance & Chief ... Consumer will represent the Company in a session scheduled ... . --> www.investor.jnj.com . --> ...
(Date:2/9/2016)... , Feb. 9, 2016  Bluestar Silicones will ... product line for long-term implant applications and announce ... Design & Manufacturing (MD&M) West Conference (Booth #1759), ... --> --> Available ... Biomedical LSRs offer outstanding physical properties enabling our ...
Breaking Medicine Technology: