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.
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 NewsLexeo Therapeutics Reports Third Quarter 2025 Financial Results and Operational Highlights
Industry News
FA Symposium Recordings Now Available!
Education, FARA NewsLexeo Therapeutics Announces Progress in FDA Discussions for Accelerated Approval Pathway and Positive Interim Clinical Data for LX2006 in Friedreich Ataxia Cardiomyopathy
Industry News
September/October 2025 - Advocacy Newsletter
AdvocacyLarimar Therapeutics Announces Positive Data from Ongoing Long-term Open Label Study and Updates to Nomlabofusp Program for Friedreich’s Ataxia
Industry NewsWebinar Recording: Solid Biosciences September 2025 Update
FARA News, Industry NewsSiblings Jake and Claire Juip face Friedreich's ataxia together
CommunityLexeo Therapeutics Reports Second Quarter 2025 Financial Results and Operational Highlights
Industry NewsPress Release & Community Statement: PTC Therapeutics Receives Complete Response Letter for Vatiquinone NDA
Industry News
August 2025 - Advocacy Newsletter
Advocacy
Our upcoming events.
Kendra Scott Gives Back VIRTUAL Event
Shop Kendra Scott ONLINE December 12th-December 15th and use code GIVEBACK-KSADT at checkout to donate 20% of sales to the Cure FA Soirée.
Grassroots
Kendra Scott Gives Back In-Store Event
Join us for a Kendra Scott Giveback Event to support FARA & the Cure FA Soirée! Shop their stunning jewelry collection IN-PERSON on Dec. 14th 2-4pm at the Spring Creek Plaza. Mention the Cure FA Soirée at the register!
Grassroots
FA Community Conversations: FA Cardiac Disease
Join us on Tuesday, December 16, at 7pm ET for a conversation about FA cardiac disease. In this session, learn more about the symptoms and clinical management of FA cardiac disease plus ongoing research that's helping scientists and clinicians learn more about the FA heart.
Education
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
Tampa Bay Kids Triathlon
The TBKT offers youth athletes, experienced and first-timers alike, the unique opportunity to swim, bike and run in and around Busch Gardens’® premier water park, Adventure Island.
Grassroots
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
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