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.
Community Statement: Biogen announces BRAVE Phase 3 Pediatric Study of Omaveloxolone
Industry News
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
Advocacy
Our upcoming events.
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
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
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
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
rideATAXIA Hometown Boston
Join our local Boston committee for a family-friendly ride along the original battlefields where the Revolutionary War began! The Boston FA community has a strong history of raising funds for FA research. This will be our third annual rideATAXIA Hometown Boston event.
rideATAXIA
43rd Annual Claxton Classic Golf Tournament
Golf tournament. Entry includes breakfast, green fees, cart, driving range, and lunch.
Grassroots
rideATAXIA Chicago 2025
Save the date for rideATAXIA Chicago! More details to come soon!
rideATAXIA
Fine Arts for FA: Curtain Call for a Cure
Curtain Call for a Cure is a cabaret filled with musical numbers from everyone’s favorite broadway shows, put on entirely by students from the Sioux Falls area. This year’s show will feature fan favorites from past FA4FA performances, in honor of the program’s 10th anniversary.
Grassroots