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.
April/May 2025 - Advocacy Newsletter
AdvocacyWebinar Recording: Solid Biosciences April 2025 Update
FARA News, Industry NewsPress 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
March 2025 - Advocacy Newsletter
AdvocacyPress Release & Community Update: Lexeo Therapeutics Reports Fourth Quarter and Full Year 2024 Financial Results and Operational Highlights
Industry NewsLarimar Therapeutics Provides Nomlabofusp Development Update and Reports Fourth Quarter and Full Year 2024 Financial Results
Industry NewsSKYCLARYS™ (omaveloxolone) Approval by Health Canada Ushers in a New Era for Friedreich’s Ataxia Treatment in Canada
Industry NewsDesign Therapeutics Initiated Phase 1 Single Ascending Dose Trial of DT-216P2 in Healthy Volunteers
Industry NewsFA Community Statement from Biogen
Industry NewsPress 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
February 2025 - Advocacy Newsletter
AdvocacyJob Posting: Development Manager (Major Gifts)
FARA News
Our upcoming events.
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
FARA Flash Talks Session #1
Education
rideATAXIA Hometown Chico
Join us on May 10 for a pre-Mother's Day family-friendly ride!
rideATAXIA Hometown
An Informational Session with Lexeo Therapeutics
Education
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
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
rideATAXIA Hometown Danville
rideATAXIA
An Informational Session with Biogen
Education
FARA Flask Talks Session #2
Education
Fine Arts for FA: Shrek the Musical
SHREK THE MUSICAL is presented through special agreement with Musical Theatre International (MTI). All authorized performance materials are also supplied by MTI. www.mtishows.com Book and Lyrics by David Lindsay-Abaire. Music by Jeanine Tesori. Originally produced on Broadway by DreamWorks Theatricals and Neal Street Productions.
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
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