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.
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 | Jul 10, 2025 | News

Meet the 2025 FARA Fellows

FARA News, Research
News | Jul 7, 2025 | News

Press Release and Community Statement: Lexeo Therapeutics Announces FDA Breakthrough Therapy Designation for LX2006 in Friedreich Ataxia

Industry News
News | Jul 3, 2025 | News

June/July 2025 - Advocacy Newsletter

Advocacy
News | Jun 30, 2025 | News

Press Release: Muscular Dystrophy Association and Friedreich’s Ataxia Research Alliance Announce New Collaborative Grant to Study Cardiac Fibrosis in Friedreich’s Ataxia

FARA News
News | Jun 23, 2025 | News

Press Release: Larimar Therapeutics Announces FDA Recommendations on Safety Database, and Other Details of Nomlabofusp BLA Submission for Friedreich’s Ataxia Program

Industry News
News | Jun 18, 2025 | News

Press Release and Community Statement: Biogen Initiates Phase 3 Pediatric Study of Omaveloxolone for the Treatment of Friedreich Ataxia

Industry News
News | Jun 5, 2025 | News

Webinar Recording: Biogen May 2025 Update

FARA News, Industry News
News | Jun 5, 2025 | News

Webinar Recording: Lexeo Therapeutics May 2025 Update

FARA News, Industry News
News | Jun 4, 2025 | News

Design Therapeutics Announces Start of Friedreich Ataxia Patient Dosing Ex-U.S. in its RESTORE-FA Phase 1/2 Multiple-Ascending Dose Trial of DT-216P2

Industry News
News | Jun 3, 2025 | News

Gehr Family shares their FA journey, how they raise awareness of Friedreich's ataxia, and the upcoming Cure FA Soirée with local media outlets

Industry News
News | May 7, 2025 | News

Community Statement: Biogen announces BRAVE Phase 3 Pediatric Study of Omaveloxolone

Industry News
News | May 2, 2025 | News

April/May 2025 - Advocacy Newsletter

Advocacy
FARA events

Our upcoming events.

EVENT | Aug 6 2025

Community Conversations: FA Drug Development Pipeline

Join us for the next FA Community Conversation on Wednesday, August 6, at 12 p.m. ET. FARA hosts these virtual sessions to keep the FA community informed and engaged. They are live, interactive events that offer individuals living with FA and their families the opportunity to learn and ask questions.

Education
Virtual
EVENT | Aug 9 2025

Swing for a Cure: Softball Tournament

Softball tournament 10U Rec Friendly. $125/Team for 2 Games. Features Bet & 50/50 Raffles, Concession Stand, No Gate Fees, and Shirts for Pre-Order.

Grassroots
Greentown Athletic Club, Uniontown
EVENT | Aug 10 2025

Rock 'N' Jock Charities: Night of Entertainment

A Night of Entertainment featuring Steve Smith and The Nakeds with special guests, a silent auction, dinner, drinks and dancing.

Grassroots
The Crowne Plaza Warwick, Warwick
EVENT | Aug 11 2025

Rock 'N' Jock Charities: Golf Tournament

Golf Tournament benefitting FARA and A Wish Come True.

Grassroots
Potowomut Golf Club, East Greenwich
EVENT | Aug 16 2025

8th Annual Race for Matt & Grace Golf Tournament

Golf tournament benefitting The Race for Matt & Grace, Inc.

Grassroots
Valley Country Club, Warwick
EVENT | Aug 24 2025

Team FARA: Liam Kruesi Aquabike Race

Team FARA Member Liam Kruesi will be the first person living with FA to race in the Aquabike of the Fort De Soto Triathlon Series in St. Petersburg, FL.

Grassroots
Fort De Soto Park, St. Petersburg
EVENT | Sep 7 2025

Fuzzy Buzzy Charity Golf Tournament 2025

The Fuzzy Buzzy Charity Golf Tournament is an annual event held every year since 1986.

Grassroots
Windham Country Club, Windham, New Hampshire
EVENT | Sep 13 2025

Teeing Up for Tye

Teeing Up for Tye is a golf tournament in memory of Tye Bell, inspired by his passion for golf. Funds from Teeing Up for Tye will benefit the Tye Bell Memorial Scholarship and FARA.

Grassroots
Mill Creek Country Club, Salado, Texas
EVENT | Sep 17 2025

7th United Against Ataxia Hill Day

Advocacy
Virtual
EVENT | Sep 20 2025

Race for Matt & Grace

This daylong event features a 5K, 1.5 Mile Fun Walk and an after-party with food and live entertainment.

Grassroots
Rhode Island College, Providence
EVENT | Sep 21 2025

rideATAXIA Hometown Twin Cities

Join us this September for a family-friendly ride along the Mississippi River Greenway Trail!

rideATAXIA
Scharr’s Bluff Gathering Center, Hastings, Minnesota
EVENT | Sep 27 2025

USF Research Reception Brunch

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
USF Health Morsani College of Medicine & Heart Institute, Tampa