Powering research to treat and cure 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.
Research leading to new treatments for Friedreich’s ataxia
Join a passionate community and change the course of this rare disease
Apply for FA research grants
Collaborate with the FA research community
Use FARA resources to accelerate FA research
Latest news from our community.
FA Community Conversations – FDA’s Accelerated Approval Pathway: Recording Available on YouTube
EducationPress Release: Graviton BioScience Announces Clearance of Investigational New Drug (IND) for GV101 for the Treatment of Friedreich's Ataxia
Industry News
August 2026 - Advocacy Newsletter
Advocacy
Community Statement: Update from Biogen
Industry News
Press Release: Cellares and Papillon Therapeutics Partner to Automate Manufacturing of PPL-001 for Patients With Friedreich’s Ataxia
Industry News
Community Statement: Update from Biogen
Industry NewsMeet the 2026 FARA Fellows
FARA News, Research
July 2026 - Advocacy Newsletter
AdvocacyWebinar Recording: PTC Therapeutics June 2026
FARA News, Industry News
Press Release: Larimar Therapeutics Reports Positive Open Label Data and Submission of First Module of Rolling BLA for Accelerated Approval of Nomlabofusp for Friedreich’s Ataxia
Industry NewsWebinar Recording: Lexeo Therapeutics May 2026
FARA News, Industry News
Press Release & Community Statement: Lexeo Therapeutics Announces Publication in JAMA Cardiology of Phase I/II Data for LX2006 in Friedreich Ataxia
Industry News
Our upcoming events.
Fuzzy Buzzy Charity Golf Tournament
The Fuzzy Buzzy Charity Golf Tournament is an annual event held every year since 1986.
Grassroots
rideATAXIA Hometown St. Louis
Join us Saturday, September 19th for a ride/walk to benefit FARA! Registration to open in June 2026.
rideATAXIA
rideATAXIA Hometown Twin Cities
Join us Saturday, September 19 for a family-friendly ride along the Mississippi River Greenway Trail!
rideATAXIA
Team FARA: Rare Link Triathlon Relay
Team FARA's Rare Link, led by Liam Kruesi, will be completing a triathlon relay-style.
Grassroots
Race for Matt & Grace
5K and Family Fun Walk to cure FA
Grassroots
rideATAXIA Philly 2026
Join us at Montgomery County Community College for an amazing day with our FAmily. Choose between a 3-, 6-, 26-, or 46-mile ride, or a 1.5-mile walk/ride on campus – there's something for everyone! After your ride, join us for an awesome celebration of your fundraising efforts to help find treatments and cures for FA.
rideATAXIA
FARA & CHOP FA Symposium
Save the date! This is a free day-long event held in King of Prussia, Pennsylvania, filled with presentations for people living with FA and their families, with the option to participate in-person or virtually.
Education
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
The FARA Energy Ball
The FARA Energy Ball is a high-energy gala that brings together hundreds of supporters to raise funds for critical research into Friedreich's ataxia (FA).
FARA Energy Ball
Mattoberfest 2026
Enjoy an Octoberfest event for FARA in Matt DiIorio's memory.
Grassroots
Team FARA: TCS New York City Marathon
FARA is an Official Charity Partner for the 2026 TCS New York City Marathon. Team FARA will run the marathon to redefine what is possible when we work together towards a common goal- treatments and a cure for Friedreich's ataxia (FA).
Grassroots
rideATAXIA Dallas 2026
Get ready for an amazing day at Lewisville Railroad Park on Saturday, November 7! Registration is now open.
rideATAXIA