Powering research to treat and cure Friedreich’s ataxia
Dear FA family,
Although the circumstances of our meeting are difficult, we are glad that you have found the Friedreich's Ataxia Research Alliance.
Research leading to new treatments for Friedreich’s ataxia
Join a passionate community and change the course of this rare disease
Apply for FA research grants
Collaborate with the FA research community
Use FARA resources to accelerate FA research
Latest news from our community.
Solid Biosciences Receives FDA Orphan Drug Designation for SGT-212 Dual-Route Gene Therapy for the Treatment of Friedreich’s Ataxia
Industry News
Solid Biosciences Doses First Participant in First-in-Class Phase 1b FALCON Trial Evaluating SGT-212 Dual-Route Gene Therapy for the Treatment of Friedreich’s Ataxia
Industry NewsJob Posting: Clinical Operations Manager
FARA News
December 2025 - Advocacy Newsletter
Advocacy
FA Community Conversations FA Cardiac Disease Webinar: Recording Available on YouTube
Education
Community Statement: 2025 Update from Biogen
Industry NewsCIRM announces $7.4 million funding award for CRISPR/Cas9-mediated gene editing of hematopoietic stem and progenitor cells for Friedreich’s ataxia
Industry News
Solid Biosciences Receives FDA Rare Pediatric Disease Designation for SGT-212 Dual Route of Administration Gene Therapy for Friedreich's Ataxia
Industry NewsJob Posting: Advocacy Program Coordinator
FARA News
November 2025 - Advocacy Newsletter
Advocacy
Lexeo Therapeutics Reports Third Quarter 2025 Financial Results and Operational Highlights
Industry News
FA Symposium Recordings Now Available!
Education, FARA News
Our upcoming events.
Pull for a Cure
Join FARA and Hunters & Liars for a day of clay shooting, auctions, dinner and fellowship in support of a great cause!
Grassroots
Rare Disease Day
Rare Disease Day is a global movement to raise awareness of rare diseases and work towards equity in health care, particularly access to diagnosis and approved treatments for people living with a rare disease. Since its inception, thousands of Rare Disease Day events have taken place across the world, reaching millions of people and fostering a growing public understanding of rare diseases and the high unmet medical need of this community.
Advocacy
Hope for ToMORROW
Join Hope for ToMORROW to celebrate FARA and its contributions to research for Friedreich's Ataxia.
Grassroots
Houston FA Research Reception
This is a free, in-person educational event for the FA community. FA Research Receptions provide individuals and families affected by FA with up-to-date information about Friedreich’s ataxia research and an opportunity to meet others in the community.
Education
rideATAXIA Hometown Lake Charles
We invite you to join us for a fun 3-mile ride at Sam Houston Jones State Park and celebrate your fundraising efforts with teammates.
rideATAXIA
BBQ Love Fest
The 3rd Annual BBQ Love Fest fires up the grills once again for a day of mouthwatering barbecue, live music, and community spirit in Tampa, April 25th, 2026!
Grassroots
rideATAXIA Hometown Chico
Join us on May 9 for a pre-Mother's Day family-friendly ride!
rideATAXIA
New Jersey Seaside Stride
SAVE THE DATE! The NJ Seaside Stride is a fun, family-oriented event hosted by NJ families working to raise awareness and research funds for FA. The event features a walk on the boardwalk, lunch, and gift auction. More info to come.
Grassroots
Cure FA Soirée
The 9th Cure FA Soirée is an evening of arts benefitting FARA hosted by the Gehr family and the Oklahoma FA Community.
Grassroots
rideATAXIA Chicago 2026
Save the date for rideATAXIA Chicago! More details to come soon!
rideATAXIA
rideATAXIA Philly 2026
Save the date for rideATAXIA Philly! More details to come soon!
rideATAXIA
FARA & CHOP FA Symposium
Save the date! This is a free day-long event filled with presentations for people living with FA and their families, with the option to participate in-person or virtually. More information to come.
Education