News & Press Releases
Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.
STATegics, Inc. announces a grant from FARA to Support it's Program
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The Alliance’s 'member spotlight' is currently shining on …
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FARA ADVOCATES FOR PATIENTS …
FARA (the Friedreich’s Ataxia Research Alliance) advocates for the thousands of children and adults across the United States who were born with Friedreich’s ataxia and are fighting this disease bravely but dying young because they currently have no treatment. FARA is an IRS-recognized public charity that funds medical research aimed at treatments and a cure for Friedreich’s ataxia — a rare, hereditary, debilitating and life-shortening neuromuscular disorder. Childhood onset of symptoms usually occurs between the ages of 5 and 15 and includes loss of strength and coordination in the arms and legs requiring early, full-time wheel chair use in most cases; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); energy deprivation; diabetes, and severe heart disease that frequently is the cause of early death.
Read More: The Alliance’s “member spotlight” is currently shining on …
SAVE THE DATE! 4th Annual Friedreich's Ataxia Symposium October 8th, 2011
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Gathering lets people with disease know they're not alone
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NEW DURHAM TOWNSHIP — Paula and Tom Hook had 95 guests at their New Durham Township home this weekend, many of them using wheelchairs. The guests fished and used the family swimming pool. They tie-dyed T-shirts and enjoyed meals and snacks. They talked and laughed together.
Some came from as far away as New England. One man traveled from Paris.
All were affected in one way or another with what is known as an orphan disease – Friedreich’s Ataxia, which causes loss of coordination in arms and legs, fatigue, vision impairment, hearing loss and slurred speech, aggressive curvature of the spine, diabetes and a serious heart condition.
The get-together was called FA Woodstock at the Flying H Ranch. It was the second event.
“We hope soon to be celebrating a cure at one of these gatherings,” Paula said.
“Last year, we had 30 people,” she added. “This year: 95.”
Read More: Gathering lets people with disease know they're not alone
FARA/RepliGen Webinar – Tuesday July, 26th 1:00pm EST
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- Determined to fight it
- FARA President's Letter
- EPI-A0001 Improves Neurological Outcome Endpoint in 28-Day Phase 2A Double-Blind Placebo-Controlled Clinical Trial in Friedreich’s Ataxia
- FARA Grant Funding Opportunities 2011
- FDA Grants Orphan Drug Designation to EPI-743 and Allows Expanded Access in Mitochondrial Diseases Including Friedreich’s Ataxia