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.
Janaury 2025 - Advocacy Newsletter
AdvocacyLarimar Therapeutics Announces Dosing of Adolescents in Nomlabofusp Pediatric Pharmacokinetic Run-In Study for Patients with Friedreich’s Ataxia
Industry NewsSolid Biosciences Receives FDA Fast Track Designation for SGT-212 Dual Route of Administration Gene Therapy for Friedreich’s Ataxia
Industry NewsPress Release & Community Letter: Solid Biosciences Announces FDA IND Clearance for First-In-Industry Dual Route of Administration Gene Therapy to Treat Both Neurologic and Cardiac Manifestations of Friedreich’s Ataxia
Industry News
December 2024 - Advocacy Newsletter
AdvocacyPTC Therapeutics Announces Vatiquinone NDA Submission to FDA for the Treatment of Children and Adults Living with Friedreich's Ataxia
Industry NewsLarimar Therapeutics Announces Positive Initial Data from Ongoing Long-term Open Label Extension Study & Progress Across Nomlabofusp Program for Friedreich’s Ataxia
Industry News
Highlights of FA research from ICAR 2024
Research
November 2024 - Advocacy Newsletter
AdvocacyLarimar Therapeutics Presents Additional Data from Phase 1 Studies and Phase 2 Dose Exploration Study Supporting the Nomlabofusp Clinical Program at ICAR 2024
Industry NewsLexeo Therapeutics Announces Complete Enrollment of LX2006 SUNRISE-FA Phase 1/2 trial and Alignment with FDA on an Accelerated Approval Pathway
Industry NewsLarimar Therapeutics Announces Three Poster Presentations at the 2024 International Congress for Ataxia Research (ICAR) on November 12–15, 2024
Industry News
Our upcoming events.
Runway to the Cure
Join us on February 1, 2025, from 6-10 PM for Runway to the Cure at Banyan Air in Ft. Lauderdale, FL. Enjoy dinner, a silent auction, and music while supporting Friedreich’s Ataxia research!
Grassroots
FA Research Reception - Chandler, AZ
The Friedreich’s Ataxia Research Alliance (FARA) is pleased to present this 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
Rare Disease Week in D.C.
Join FARA and the EveryLife Foundation in Washington D.C. from Monday, February 24 to Wednesday, February 26 for a chance to engage with the rare community, learn about legislative priorities, and share your story with your Members of Congress! The event is free to attend, and EveryLife will coordinate all training, meetings, and events for you.
Advocacy
Rare Disease Week in D.C.
Join FARA and the EveryLife Foundation in Washington D.C. from Monday, February 24 to Wednesday, February 26 for a chance to engage with the rare community, learn about legislative priorities, and share your story with your Members of Congress! The event is free to attend, and EveryLife will coordinate all training, meetings, and events for you.
Advocacy
Rare Disease Week in D.C.
Join FARA and the EveryLife Foundation in Washington D.C. from Monday, February 24 to Wednesday, February 26 for a chance to engage with the rare community, learn about legislative priorities, and share your story with your Members of Congress! The event is free to attend, and EveryLife will coordinate all training, meetings, and events for you.
Advocacy
Rare Disease Day at NIH & FDA
The FDA and NIH will be holding a joint event for Rare Disease Day from Thursday, February 27 and Friday, February 28. This event is free to attend and has both an in-person and virtual option, allowing you to attend even if you can’t make it to DC!
Advocacy
Rare Disease Day at NIH & FDA
The FDA and NIH will be holding a joint event for Rare Disease Day from Thursday, February 27 and Friday, February 28. This event is free to attend and has both an in-person and virtual option, allowing you to attend even if you can’t make it to DC!
Advocacy
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
rideATAXIA Gainesville 2025
Get ready for an amazing day at Depot Park! Whether you're up for a 4 or 16-mile ride on the scenic Gainesville-Hawthorne Trail or a 1-mile walk/ride within the park, there's something for everyone. After your ride, join us for a celebration of your incredible fundraising efforts to help find treatments and cures for FA.
rideATAXIA
The 15th 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
Burrows Hill Foundation Night to Fight FA
The Burrows Hill Foundation to Fight Friedreich's Ataxia is hosting A Night to Fight FA at the Akerson Tower in the Navy Marine Corps Memorial Stadium on April 12, 2025. This event will include dinner, open bar, and silent and live auctions.
Grassroots
11th Annual Tampa Bay Kids Triathlon
TBKT offers youth athletes the unique opportunity to swim, bike and run in and around Adventure Island. Ages 6-14 can participate. A portion of registration fees is donated to the Friedreich’s Ataxia Research Alliance (FARA).
Grassroots