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.
Meet the 2025 FARA Fellows
FARA News, ResearchPress Release and Community Statement: Lexeo Therapeutics Announces FDA Breakthrough Therapy Designation for LX2006 in Friedreich Ataxia
Industry News
June/July 2025 - Advocacy Newsletter
Advocacy
Press Release: Muscular Dystrophy Association and Friedreich’s Ataxia Research Alliance Announce New Collaborative Grant to Study Cardiac Fibrosis in Friedreich’s Ataxia
FARA NewsPress Release: Larimar Therapeutics Announces FDA Recommendations on Safety Database, and Other Details of Nomlabofusp BLA Submission for Friedreich’s Ataxia Program
Industry NewsPress Release and Community Statement: Biogen Initiates Phase 3 Pediatric Study of Omaveloxolone for the Treatment of Friedreich Ataxia
Industry NewsWebinar 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
Advocacy
Our upcoming events.
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
Community Conversations: FA Drug Development Pipeline
Join us for the next FA Community Conversation on Wednesday, August 6, at 12 p.m. ET. FARA hosts these virtual sessions to keep the FA community informed and engaged. They are live, interactive events that offer individuals living with FA and their families the opportunity to learn and ask questions.
Education
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
Fuzzy Buzzy Charity Golf Tournament 2025
The Fuzzy Buzzy Charity Golf Tournament is an annual event held every year since 1986.
Grassroots
Teeing Up for Tye
Teeing Up for Tye is a golf tournament in memory of Tye Bell, inspired by his passion for golf. Funds from Teeing Up for Tye will benefit the Tye Bell Memorial Scholarship and FARA.
Grassroots