Friedreich's Ataxia Research Alliance

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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
CEO
Jen Farmer
Revenue (2017)
$7,533,537[1]
Expenses (2017)$6,811,814[1]
Websitewww.curefa.org
Co-founder Ronald J. Bartek in 2017

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.[1] 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]

References

  1. ^ a b c "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". May 2023.
  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. ^ 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.
  8. ^ "CureFA Ride Ataxia". CureFA Ride Ataxia. Retrieved March 13, 2019.
  9. ^ 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.


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