Friedreich's Ataxia Research Alliance
 | |
| 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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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]
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]
References
- 1 2 Friedreich's Ataxia Research Alliance (2024). "Form 990: Return of Organization Exempt from Income Tax (2024)" (PDF). Internal Revenue Service. Retrieved June 20, 2026 – via curefa.org.
- ↑ Medical and Health Information Directory: A Guide to Organizations, Agencies, Institutions, Programs, Publications, Services, and Other Resources Concerned with Clinical Medicine, Basic Biomedical Sciences, and the Technological and Socioeconomic Aspects of Health Care. Gale Cengage Learning. 2010. ISBN 978-1414467771.
- ↑ "Friedreich's Ataxia Research Alliance". May 2023.
- ↑ "The Friedreich's Ataxia Research Alliance (FARA) Announces Recipients of the 2016 Ataxian Athlete Initiative (AAI)".
- ↑ Wright, Kristi (May 15, 2008). "The Race Against Time for Friedreich's Ataxia—A true test of endurance". Santa Clara Weekly.
- ↑ "Racing For A Cure, Kate Walker Received High Honor". Winn Parish Enterprise. Feb 20, 2019.
- ↑ Holohan, Meghan (October 2, 2019). "MIND & BODY How one of these twins with the same rare disease is working to find a cure". Retrieved 17 November 2019.
- ↑ "CureFA Ride Ataxia". CureFA Ride Ataxia. Retrieved March 13, 2019.
- ↑ Lindskog, Chad (October 15, 2018). "Archuleta battling debilitating disease SAM ARCHULETA, THE 15-YEAR-OLD SON OF USI BASEBALL COACH TRACY, SUFFERS FROM THE RARE NEUROMUSCULAR DISORDER FRIEDREICH'S ATAXIA". Evansville Courier & Press.
- 1 2 Pilotto, Federica; Chellapandi, Deepika M.; Puccio, Hélène (February 2024). "Omaveloxolone: a groundbreaking milestone as the first FDA-approved drug for Friedreich ataxia". Trends in Molecular Medicine. 30 (2): 117–125. doi:10.1016/j.molmed.2023.12.002.
- ↑ "European Commission Approves Omaveloxolone as First Therapy for Friedreich Ataxia". NeurologyLive. Retrieved June 20, 2026.
- ↑ "First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day" (Press release). Friedreich's Ataxia Research Alliance. February 28, 2023. Retrieved June 20, 2026.