The Friedreich's Ataxia Research Alliance (FARA) is a

501(c)(3) A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of ...

, non-profit, tax-exempt organization formed to support the research on

Friedreich's ataxia Friedreich's ataxia (FRDA) is a rare, inherited, autosomal recessive neurodegenerative disorder that primarily affects the nervous system, causing progressive damage to the spinal cord, peripheral nerves, and cerebellum, leading to impaired ...

. It was formed in 1998 by Ron and Raychel Bartek. 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 Charity Navigator is a charity assessment organization that evaluates more than 230,000 charitable organizations based in the United States, operating as a 501(c)(3) organization. It provides insights into a nonprofit's financial stability, adh ...

since 2011. Research is also advanced by its partnership with the

Muscular Dystrophy Association Muscular Dystrophy Association (MDA) is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related Neuromuscular disease, neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived wi ...

. FARA organizes various cycling fundraising events One of the biggest events is the RideAtaxia which is a sponsored bicycle ride in various locations akin to

Race for the Cure Susan G. Komen (formerly known as Susan G. Komen for the Cure; originally as The Susan G. Komen Breast Cancer Foundation; often referred to simply as Komen) is a breast cancer organization in the United States. Komen works on patient navigation ...

. The organization maintains a large

patient registry Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. Registries are different from ...

References

Medical research organizations Health charities in the United States Organizations established in 1998 1998 establishments in Pennsylvania Medical and health organizations based in Pennsylvania Rare disease organizations {{Nonprofit-org-stub