Friedreich's Ataxia Research Alliance
Organization to research Friedreich's ataxia
From Wikipedia, the free encyclopedia
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, tax-exempt organization formed to support the research on Friedreich's ataxia. It was formed in 1998 by Ron and Raychel Bartek.[2][3][4] FARA's turnover in 2017 was $7.3 million with over 98% spent on programs. It has had a Four Star rating from Charity Navigator since 2011.[5] Research is also advanced by its partnership with the Muscular Dystrophy Association.[6] FARA organizes various cycling fundraising events[7] One of the biggest events is the RideAtaxia[8] which is a sponsored bicycle ride in various locations akin to Race for the Cure.[9] The organization maintains a large patient registry.[10]
| |
| Founded | 1998 |
|---|---|
| Founders | Ronald J Bartek, Raychel Bartek |
| Legal status | 501(c)(3) nonprofit organization |
| Headquarters | Downingtown, PA |
| Services | Grantmaking for medical research; public awareness and education |
Chairman | Paul Avery |
President | Ron Bartek |
CEO | Jen Farmer |
| Revenue | $13,135,426[1] (2024) |
| Expenses | $13,277,236[1] (2024) |
| Website | www |
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Research
FARA maintains the Friedreich's Ataxia Clinical Outcome Measures Study (FACOMS), a longitudinal natural-history study of people with Friedreich's ataxia.[11] Natural-history data from FACOMS were used in the propensity-matched analysis that supported the 2023 U.S. Food and Drug Administration approval of omaveloxolone (marketed as Skyclarys), the first treatment approved specifically for Friedreich's ataxia.[11][12] FARA has stated that research it funded and the participation of patient families in clinical trials and natural-history studies contributed to the drug's development.[13]
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