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 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 NewsPTC 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 NewsCapsida Biotherapeutics to Present New Preclinical Data for Friedreich’s Ataxia Next-Generation Gene Therapy to Target CNS, Cardiac Tissues and Sensory Regions
Industry News
Global Ataxia Advocacy Organizations Unite to Host Largest International Congress for Ataxia Research in London
FARA News, ResearchPapillon Therapeutics Receives Rare Pediatric Disease Designation from the U.S. Food and Drug Administration for PPL-001 for the Treatment of Friedreich's Ataxia
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
This multi-day event, hosted by the EveryLife Foundation, unites rare disease advocates to raise their voices on Capitol Hill. Participants learn about policy proposals affecting the rare disease community and have the chance to advocate directly to Congress.
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
BBQ Love Fest
BBQ Love Fest was born out of the love of Bar-B-Que, with renowned pitmasters from all over the country. Along with local Cook Teams competing for your vote as who is the best local pitmaster. Mix incredible music all day long and find out how Tampa does BBQ Love Fest. BBQ Love Fest is more than a good time, it’s a philanthropic event that supports FARA.
Grassroots
Cure FA Soirée
The 8th Cure FA Soirée is an evening of arts benefitting FARA hosted by the Gehr family and the Oklahoma FA Community.
Grassroots
FA Research Reception – Oklahoma City, OK
More details TBD. 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 Chicago 2025
Save the date for rideATAXIA Chicago! More details to come soon!
rideATAXIA