Powering research to treat 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.
Leading to the discovery and advancement of treatments for FA
Join a passionate community and change the course of this rare disease
Apply for a research grant and make an impact
Work with an experienced research community
Utilize FARA resources to help optimize the pace of research
Latest news from our community.
Webinar Recording: Biogen May 2025 Update
FARA News, Industry NewsWebinar Recording: Lexeo Therapeutics May 2025 Update
FARA News, Industry NewsDesign Therapeutics Announces Start of Friedreich Ataxia Patient Dosing Ex-U.S. in its RESTORE-FA Phase 1/2 Multiple-Ascending Dose Trial of DT-216P2
Industry NewsGehr Family shares their FA journey, how they raise awareness of Friedreich's ataxia, and the upcoming Cure FA Soirée with local media outlets
Industry NewsCommunity Statement: Biogen announces BRAVE Phase 3 Pediatric Study of Omaveloxolone
Industry News
April/May 2025 - Advocacy Newsletter
AdvocacyWebinar Recording: Solid Biosciences April 2025 Update
FARA News, Industry NewsPress Release & Community Update: Lexeo Therapeutics Announces Positive Interim Phase 1/2 Data for LX2006 in Friedreich Ataxia Cardiomyopathy Supporting Advancement to Registrational Study
Industry News
March 2025 - Advocacy Newsletter
AdvocacyPress Release & Community Update: Lexeo Therapeutics Reports Fourth Quarter and Full Year 2024 Financial Results and Operational Highlights
Industry NewsLarimar Therapeutics Provides Nomlabofusp Development Update and Reports Fourth Quarter and Full Year 2024 Financial Results
Industry NewsSKYCLARYS™ (omaveloxolone) Approval by Health Canada Ushers in a New Era for Friedreich’s Ataxia Treatment in Canada
Industry News
Our upcoming events.
An Informational Webinar with Design Therapeutics
Join Design Therapeutics for a webinar on June 11 at 7PM ET with speaker Chris Storgard, Chief Medical Officer at Design Therapeutics, who will discuss the FA GeneTAC® DT-216P2 program and upcoming clinical trials.
Education
rideATAXIA Hometown Boston
Join our local Boston committee for a family-friendly ride along the original battlefields where the Revolutionary War began! The Boston FA community has a strong history of raising funds for FA research. This will be our third annual rideATAXIA Hometown Boston event.
rideATAXIA
43rd Annual Claxton Classic Golf Tournament
Golf tournament. Entry includes breakfast, green fees, cart, driving range, and lunch.
Grassroots
rideATAXIA Chicago 2025
Save the date for rideATAXIA Chicago! More details to come soon!
rideATAXIA
Fine Arts for FA: Curtain Call for a Cure
Curtain Call for a Cure is a cabaret filled with musical numbers from everyone’s favorite broadway shows, put on entirely by students from the Sioux Falls area. This year’s show will feature fan favorites from past FA4FA performances, in honor of the program’s 10th anniversary.
Grassroots
Fine Arts for FA: Curtain Call for a Cure
Curtain Call for a Cure is a cabaret filled with musical numbers from everyone’s favorite broadway shows, put on entirely by students from the Sioux Falls area. This year’s show will feature fan favorites from past FA4FA performances, in honor of the program’s 10th anniversary.
Grassroots
Swing for a Cure: Softball Tournament
Softball tournament 10U Rec Friendly. $125/Team for 2 Games. Features Bet & 50/50 Raffles, Concession Stand, No Gate Fees, and Shirts for Pre-Order.
Grassroots
Rock 'N' Jock Charities: Night of Entertainment
A Night of Entertainment featuring Steve Smith and The Nakeds with special guests, a silent auction, dinner, drinks and dancing.
Grassroots
Rock 'N' Jock Charities: Golf Tournament
Golf Tournament
Grassroots
8th Annual Race for Matt & Grace Golf Tournament
Golf tournament benefitting The Race for Matt & Grace, Inc.
Grassroots
7th United Against Ataxia Hill Day
Advocacy
Race for Matt & Grace
This daylong event features a 5K, 1.5 Mile Fun Walk and an after-party with food and live entertainment.
Grassroots