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Welcome
Hello, and welcome to the Web site of the
Friedreich's Ataxia Research Alliance [FARA]. This site is
designed for patient families, scientific
investigators, and healthcare professionals
interested in Friedreich's Ataxia [FRDA]. The materials provided
here include basic background information on FRDA
[its cause, symptoms, and potential treatments],
summaries of current research, scientific abstracts, links to publications from scientific and
medical journals, guidelines for research grant applications, explanations of current clinical
trials and ongoing studies, FARA Updates, information helpful to patient
families, and information on how you can make a donation or raise funds to support
the research.
Research Pipeline
FARA has supported and is supporting these efforts by providing various combinations of direct funding, essential clinical infrastructure, advocacy and awareness efforts.
› View the Research Pipeline
Spotlight on...
› New FARA Position: VP / Chief Executive for Science
FARA is seeking a Vice-President / Chief Executive for Science to help advance their scientific goals. Key responsibilities include: Chairing the FARA Scientific Advisory Board, Overseeing the FARA Grant Program, and Serving as FARA Scientific Ambassador to the larger research community.
› 2008 Kyle Bryant Translational Research Award
The Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) invite proposals, under a competitive Request for Applications (RFA) process, to award a grant focusing on pre-clinical and clinical investigations...
› 2008 NY Emmy Win! The Keeping Kids Healthy Friedreich's Ataxia segment on PBS featuring the Bode / Caruso family, the Orth family, and the Simpson family won the New York Emmy for Health / Science Program / Special. The show will air on channel Thirteen / WNET in New York on Friday, May 2 at 2:30 pm and Saturday, May 3 at 6:30 am. Click to learn more about the program.
› Sean Baumstark, co-organizer of Ride Ataxia II, was selected to participate in the passing of the Olympic Torch in San Francisco on Wednesday, April 9. 536 people applied to carry the torch, and Sean was one of the thirty-five chosen in San Francisco.
Click on the following links to read and view press coverage:
http://www.nbc11.com/newsarchive/15795809/detail.html
http://cbs13.com/video/?id=32165@kovr.dayport.com
› Cyclists Bring Attention to Disabling Disease — Friedreich's Ataxia
› Cyclist with Rare Neuromuscular Disorder to Arrive in Las Vegas March 27 Following Cross-Country Journey
› Author, Kristy Wright, is donating 75% of all royalties her novel, The Basker Twins in the 31st Century. Visit www.baskertwins.com to read excerpts and to purchase a copy.
› We are pleased to be able to announce today that Santhera Pharmaceuticals is now recruiting patients with Friedreich's Ataxia in the United States, for a Phase III clinical research trial looking at the effects of idebenone on the nervous system and the heart. We are looking for patients between the ages of 8 and 17 years who have been diagnosed with Friedreich's Ataxia.
› Sign an online petition to support Sam & Alex with their Extreme Makeover: Home Edition application. Visit Sam & Alex's page.
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