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 24, 2025 | News

Janaury 2025 - Advocacy Newsletter

Advocacy
News | Jan 23, 2025 | News

Larimar Therapeutics Announces Dosing of Adolescents in Nomlabofusp Pediatric Pharmacokinetic Run-In Study for Patients with Friedreich’s Ataxia

Industry News
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

December 2024 - Advocacy Newsletter

Advocacy
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
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 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
Capitol Hill, Washington D.C., District of Columbia
EVENT | Feb 25 2025

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
Capitol Hill, Washington D.C., District of Columbia
EVENT | Feb 26 2025

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
Capitol Hill, Washington D.C., District of Columbia
EVENT | Feb 27 2025

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
Natcher Conference Center, Bethesda, Maryland
EVENT | Feb 28 2025

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
Natcher Conference Center, Bethesda, Maryland
EVENT | Feb 28 2025

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
Global
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