MESSAGE FOR FA FAMILIES

Dear FA family,

Although the circumstances of our meeting are difficult, we are glad that you have found the Friedreich's Ataxia Research Alliance.

The FA Community is an active and supportive one. Together, we fund and facilitate research to slow, stop, reverse, and cure Friedreich’s ataxia (FA). We hope there is comfort in knowing you are not alone. Visit our Understanding FA section to help you to learn about and manage FA.
Visit Understanding FA
Community members and researchers at the Napierala Lab at UT Southwestern.
LIFE CHANGING RESEARCH

Leading to the discovery and advancement of treatments for FA

Join a passionate community and change the course of this rare disease

We work in collaboration and with a sense of urgency to build strong relationships, expand knowledge, and remove uncertainty.
Two women looking at a presentation
FUNDING

Apply for a research grant and make an impact

FARA funds a competitive, peer-reviewed grant program.

COLLABORATION

Work with an experienced research community

FARA fosters meaningful relationships, helping to develop new life changing treatments for FA.

KNOWLEDGE

Utilize FARA resources to help optimize the pace of research

Benefit from our thriving and experienced research community and utilize our extensive resource library.

Visit Research section
FARA NEWS

Latest news from our community.

News | Jan 21, 2025 | News

Solid Biosciences Receives FDA Fast Track Designation for SGT-212 Dual Route of Administration Gene Therapy for Friedreich’s Ataxia

Industry News
News | Jan 7, 2025 | News

Press 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
News | Dec 19, 2024 | News

PTC Therapeutics Announces Vatiquinone NDA Submission to FDA for the Treatment of Children and Adults Living with Friedreich's Ataxia

Industry News
News | Dec 16, 2024 | News

Larimar Therapeutics Announces Positive Initial Data from Ongoing Long-term Open Label Extension Study & Progress Across Nomlabofusp Program for Friedreich’s Ataxia

Industry News
News | Dec 5, 2024 | News

Highlights of FA research from ICAR 2024

Research
News | Nov 19, 2024 | News

November 2024 - Advocacy Newsletter

Advocacy
News | Nov 18, 2024 | News

Larimar Therapeutics Presents Additional Data from Phase 1 Studies and Phase 2 Dose Exploration Study Supporting the Nomlabofusp Clinical Program at ICAR 2024

Industry News
News | Nov 15, 2024 | News

Lexeo Therapeutics Announces Complete Enrollment of LX2006 SUNRISE-FA Phase 1/2 trial and Alignment with FDA on an Accelerated Approval Pathway

Industry News
News | Nov 14, 2024 | News

Larimar Therapeutics Announces Three Poster Presentations at the 2024 International Congress for Ataxia Research (ICAR) on November 12–15, 2024

Industry News
News | Nov 12, 2024 | News

Capsida Biotherapeutics to Present New Preclinical Data for Friedreich’s Ataxia Next-Generation Gene Therapy to Target CNS, Cardiac Tissues and Sensory Regions

Industry News
News | Nov 12, 2024 | News

Global Ataxia Advocacy Organizations Unite to Host Largest International Congress for Ataxia Research in London

FARA News, Research
News | Oct 16, 2024 | News

Papillon 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
FARA events

Our upcoming events.

EVENT | Feb 1 2025

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
Banyan Air, Fort Lauderdale, Florida
EVENT | Feb 8 2025

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
Hilton Phoenix Chandler, Chandler
EVENT | Feb 24 2025

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
Capitol Hill, Washington D.C., District of Columbia
EVENT | Apr 5 2025

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
Depot Park, Gainesville, Florida
EVENT | Apr 12 2025

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
Tampa Bay Sporting Clays, Land O' Lakes, Florida
EVENT | Apr 12 2025

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
Akerson Tower, Navy Marine Corps Memorial Stadium, Annapolis, Maryland
EVENT | Apr 19 2025

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
Adventure Island, Tampa, Florida
EVENT | May 3 2025

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
Perry Harvey Sr. Park, Tampa
EVENT | Jun 7 2025

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
Omni Oklahoma City Hotel, Oklahoma City, Oklahoma
EVENT | Jun 7 2025

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
Vast OKC, Oklahoma City, Oklahoma
EVENT | Jul 20 2025

rideATAXIA Chicago 2025

Save the date for rideATAXIA Chicago! More details to come soon!

rideATAXIA
Channahon Central Park, Channahon, Illinois
EVENT | Sep 17 2025

7th United Against Ataxia Hill Day

Advocacy
Virtual