Friedreich's Ataxia Research Alliance

The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, tax-exempt organization formed support research to improve the quality of life of Friedreich's ataxia patients. It was formed in 1998 by Ron and Raychel Bartek to form grants to develop treatments for Friedreich's ataxia.[2][3][4]

Friedreich's Ataxia Research Alliance
Founded1998
FoundersRonald J Bartek, Raychel Bartek
Legal status501(c)(3) nonprofit organization
HeadquartersDowningtown, PA
ServicesGrantmaking for medical research; public awareness and education
Chairman
Paul Avery
President
Ron Bartek
Executive director
Jen Farmer
Revenue (2017)
$7,533,537[1]
Expenses (2017)$6,811,814[1]
Websitewww.curefa.org

Research is also advanced by its partnership with the Muscular Dystrophy Association[5]

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.[1]

Events

Besides funding grants the organization brings together patients through events such as an annual cycling fundraising event in Dallas, Texas.[6] This makes it easier to advance clinical trials by having access to a large patient registry.[7]

The Alliance hosts several philanthropic events both locally around the chapters and nationwide. One of the biggest events is the RideAtaxia.[8] It is a sponsored bicycle ride in various locations akin to Race for the Cure, where participants bike to raise money to support research for Friedreich's Ataxia. [9]

See also

References
  1. "Charity Navigator - Rating for Friedreich's Ataxia Research Alliance".
  2. 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.
  3. "Friedreich's Ataxia Research Alliance".
  4. "The Friedreich's Ataxia Research Alliance (FARA) Announces Recipients of the 2016 Ataxian Athlete Initiative (AAI)".
  5. Wright, Kristi (May 15, 2008). "The Race Against Time for Friedreich's Ataxia—A true test of endurance". Santa Clara Weekly.
  6. "Racing For A Cure, Kate Walker Received High Honor". Winn Parish Enterprise. Feb 20, 2019.
  7. 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.
  8. 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.
  9. "CureFA Ride Ataxia". CureFA Ride Ataxia. Retrieved March 13, 2019.


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