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 | Apr 23, 2025 | News

Webinar Recording: Solid Biosciences April 2025 Update

FARA News, Industry News
News | Apr 9, 2025 | News

Press Release & Community Update: Lexeo Therapeutics Announces Positive Interim Phase 1/2 Data for LX2006 in Friedreich Ataxia Cardiomyopathy Supporting Advancement to Registrational Study

Industry News
News | Mar 31, 2025 | News

March 2025 - Advocacy Newsletter

Advocacy
News | Mar 24, 2025 | News

Press Release & Community Update: Lexeo Therapeutics Reports Fourth Quarter and Full Year 2024 Financial Results and Operational Highlights

Industry News
News | Mar 24, 2025 | News

Larimar Therapeutics Provides Nomlabofusp Development Update and Reports Fourth Quarter and Full Year 2024 Financial Results

Industry News
News | Mar 17, 2025 | News

SKYCLARYS™ (omaveloxolone) Approval by Health Canada Ushers in a New Era for Friedreich’s Ataxia Treatment in Canada

Industry News
News | Mar 10, 2025 | News

Design Therapeutics Initiated Phase 1 Single Ascending Dose Trial of DT-216P2 in Healthy Volunteers

Industry News
News | Feb 24, 2025 | News

FA Community Statement from Biogen

Industry News
News | Feb 19, 2025 | News

Press Release & Community Statement: PTC Therapeutics Announces FDA Acceptance and Priority Review for Vatiquinone NDA for the Treatment of Children and Adults with Friedreich's Ataxia

Industry News
News | Feb 18, 2025 | News

February 2025 - Advocacy Newsletter

Advocacy
News | Feb 11, 2025 | News

Job Posting: Development Manager (Major Gifts)

FARA News
News | Feb 4, 2025 | News

Letter to the FA Community from Astellas Pharma

Industry News
FARA events

Our upcoming events.

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 | May 6 2025

Raise A Glass to FARA - Wine Tasting

Raise a glass to FARA with a wine tasting at Gooseneck Vineyards! $30 Admission includes a aomplimentary glass of wine and appetizers.

Grassroots
Gooseneck Vineyards, North Kingstown, Rhode Island
EVENT | May 7 2025

FARA Flash Talks Session #1

Education
Virtual
EVENT | May 10 2025

rideATAXIA Hometown Chico

Join us on May 10 for a pre-Mother's Day family-friendly ride!

rideATAXIA Hometown
Bidwell Park, Chico, California
EVENT | May 15 2025

An Informational Session with Lexeo Therapeutics

Education
Virtual
EVENT | May 17 2025

rideATAXIA Hometown San Luis Obispo

Join us for a fun 5-mile ride or 1-mile walk on the Bob Jones Trail in beautiful Avila Beach and then stay for a celebration at Mulligan's (food and drink for purchase).

rideATAXIA Hometown
Mulligan’s Restaurant, Avila Beach
EVENT | May 17 2025

New Jersey Seaside Stride

The NJ Seaside Stride is a fun, family-oriented event hosted by NJ families working to raise awareness and research funds for FA. The event features a walk on the boardwalk, lunch, and gift auction.

Grassroots
Tri-Boro First Aid Squad, Seaside Park, New Jersey
EVENT | May 19 2025

rideATAXIA Hometown Danville

rideATAXIA
Danville, CA, Danville, California
EVENT | May 22 2025

An Informational Session with Biogen

Education
Virtual
EVENT | May 28 2025

FARA Flask Talks Session #2

Education
EVENT | Jun 7 2025

Go Hog Wild for FARA!

Go Hog Wild for FARA! $40 includes full meal with pig and sides, hamburgers, and hotdogs. Children under 12 free.

Grassroots
Portuguese American Social Club, Smithfield, Rhode Island
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