Friedreich's Ataxia Research Alliance Explained
| Friedreich's Ataxia Research Alliance |
| Headquarters: | Downingtown, PA |
| Status: | 501(c)(3) nonprofit organization |
| Founders: | Ronald J Bartek, Raychel Bartek |
| Founded: | 1998 |
| Revenue: | $7,533,537 |
| Revenue Year: | 2017 |
| Expenses: | $6,811,814 |
| Expenses Year: | 2017 |
| Services: | Grantmaking for medical research; public awareness and education |
| Leader Name: | Paul Avery |
| Leader Title: | Chairman |
| Leader Name2: | Ron Bartek |
| Leader Title2: | President |
| Leader Name3: | Jen Farmer |
| Leader Title3: | CEO |
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.[1] [2] [3] 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.[4] Research is also advanced by its partnership with the Muscular Dystrophy Association.[5] FARA organizes various cycling fundraising events[6] One of the biggest events is the RideAtaxia[7] which is a sponsored bicycle ride in various locations akin to Race for the Cure.[8] The organization maintains a large patient registry.[9]
Notes and References
- Book: . 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. 978-1414467771.
- Web site: Friedreich's Ataxia Research Alliance. May 2023.
- Web site: The Friedreich's Ataxia Research Alliance (FARA) Announces Recipients of the 2016 Ataxian Athlete Initiative (AAI).
- Web site: Charity Navigator - Rating for Friedreich's Ataxia Research Alliance.
- News: Wright . Kristi . The Race Against Time for Friedreich's Ataxia—A true test of endurance . Santa Clara Weekly . May 15, 2008.
- News: Racing For A Cure, Kate Walker Received High Honor . Winn Parish Enterprise . Feb 20, 2019.
- News: Holohan . Meghan . MIND & BODY How one of these twins with the same rare disease is working to find a cure . 17 November 2019 . October 2, 2019.
- Web site: CureFA Ride Ataxia . CureFA Ride Ataxia . March 13, 2019.
- News: Lindskog. Chad. 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. October 15, 2018. Evansville Courier & Press.
