LEARN ABOUT FA FROM INDIVIDUALS WITH FA, FAMILIES, RESEARCHERS, & MORE

Attend an Educational Event

The Friedreich’s Ataxia Research Alliance (FARA) hosts several educational events throughout the year including webinars, regional research receptions, and the annual Friedreich’s ataxia (FA) Symposium in Philadelphia which can be attended virtually or in-person.

These events highlight updates on the FA drug development pipeline, clinical management of FA, insights on living with FA and more. Speakers include researchers and pharmaceutical partners working on FA, clinicians with FA expertise, and individuals with FA and their caregivers.

Learn About FARA’s Educational Events
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GATHER TO RAISE FUNDS AND AWARENESS FOR FA

Attend a Community Event

With the help of local communities around the country, FARA hosts a wide array of events such as fundraisers and advocacy events. These events are one of many ways to contribute to FA awareness and finding treatments and cures.

For individuals living with FA and their families, attending community events offers invaluable opportunities to connect with others on the same journey, feel empowered, develop the skills and confidence to advocate for themselves, and witness first-hand the collective strength of community.

Learn About FA Community Events Find a Community Event Near You
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Upcoming Community Events

EVENT | May 21 2026

FARA Flash Talk #2

Join us this May for our annual FARA Flash Talks webinar series! Each session will consist of Flash Talks from FARA Graduate Research Fellowship recipients and FARA Fellows, moderated by FA community members. Learn more about some of the ongoing FA research projects made possible by your fundraising efforts. The talks are suitable for a lay audience. A brief Q&A will follow each talk.

Education
Virtual
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Logo for Education Event with Pharma
EVENT | May 26 2026

An Informational Webinar with Solid Biosciences

Join Solid Biosciences for an informational webinar on Tuesday, May 26 at 12 PM ET for people living with FA and their families. Matthew Harmelink, MD, Therapeutic Area Head of Neuromuscular, and Seth Rotberg, Senior Manager of Patient Advocacy, will provide an update about Solid's FALCON gene therapy (SGT-212) phase 1b study.

Education
Virtual
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Grassroots events logo
EVENT | May 27 2026

City Barbeque Give Back Event

Eat at City Barbeque in support of FARA! Present flyer or use online code to have 20% of sales donated to FARA.

Grassroots
City Barbeque, Newark
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EVENT | Jun 1 2026

9th Annual Race for Matt & Grace Golf Tournament

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

Grassroots
Potowomut Golf Club, East Greenwich
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FARA education logo
EVENT | Jun 13 2026

Oklahoma City FA Research Reception

Education
Omni Oklahoma City Hotel, Oklahoma City, Oklahoma
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Grassroots events logo
EVENT | Jun 13 2026

Cure FA Soirée

The 9th Cure FA Soirée is an evening of arts benefitting FARA hosted by the Gehr family and the Oklahoma FA Community.

Grassroots
Omni Oklahoma City Hotel, Oklahoma City, Oklahoma
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Grassroots events logo
EVENT | Jul 17 2026

44th Annual Claxton Classic Golf Tournament

Your registration fee includes continental breakfast, green fees, cart, driving range, drinks, buffet lunch, and prizes.

Grassroots
Compass Pointe Golf Course, Pasadena, Maryland
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rideATAXIA Chicago logo
EVENT | Jul 19 2026

rideATAXIA Chicago 2026

Save the date for rideATAXIA Chicago! More details to come soon!

rideATAXIA
Channahon Central Park, Channahon, Illinois
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Grassroots events logo
EVENT | Jul 25 2026

FA Fest

Enjoy food, beverages, a casino with blackjack (for fun, not money), tarot card readings, digital portraits, yard games, raffle prizes and more.

Grassroots
Freeman Residence, Edina
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rideATAXIA Hometown logo
EVENT | Aug 2 2026

rideATAXIA Hometown Boston

Registration coming soon!

rideATAXIA
Lexington Visitors Center, Lexington, Massachusetts
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Grassroots events logo
EVENT | Aug 22 2026

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
Thompson Rod and Gun Club, Thompson
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Grassroots events logo
EVENT | Aug 22 2026

Sweet Caroline's 21 for FARA

Join us for a night of music and celebration to raise funds for the Friedreich's Ataxia Research Alliance (FARA)! Hosted by the Smith Family. Featuring Blackberry Breeze.

Grassroots
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SUPPORT FARA IN THE SEARCH FOR TREATMENTS AND CURES

FARA Ambassador Program

The FARA Ambassador Program is a united volunteer team of individuals living with FA. FARA Ambassadors are positive, supportive, peer representatives for the FA community who actively raise awareness and funds for FARA. Their dedicated support of FARA is key to continued success toward FARA’s ultimate goal of treatments and cures for FA.

Learn About the FARA Ambassador Program Meet the Ambassadors
Team of pople at event

Meet the Community

photo of Shay
Blog | May 18, 2026

Meet The Community: Shay

Community
Read Story
Blog | May 11, 2026

Meet The Community: Christina Laurin

Community
Read Story
Blog | May 5, 2026

Meet The Community: Amelia and Laurel

Community
Read Story
Blog | Apr 27, 2026

Meet The Community: Frankie Leath

Community
Read Story
Blog | Apr 13, 2026

Meet the Community 2: A Closer Look – Ilva Johannsdóttir Madsen

Community
Read Story
Blog | Mar 30, 2026

Meet The Community: Emily Rogez

Community
Read Story
Blog | Mar 16, 2026

Meet The Community: Destiney Key

Community
Read Story
Photo of Zach Gault
Blog | Mar 9, 2026

Meet The Community: Zach Gault

Community
Read Story
Blog | Mar 2, 2026

Meet the Community: Janice

Community
Read Story
Blog | Feb 23, 2026

Meet the Community: Theresa Kornfell

Community
Read Story
Photo of Josh Wooten
Blog | Feb 16, 2026

Meet the Community: Josh Wooten

Community
Read Story
Preston Lynch and Family
Blog | Feb 9, 2026

Meet the Community: Preston Lynch

Community
Read Story
POWER THE CURE FOR FRIEDREICH’S ATAXIA

The FA App

The FA App helps connect and empower individuals with FA worldwide so they can meaningfully participate in FA research. The FA App is available on iOS and Android.

Download FA App
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FAPG, FA HANGOUTS, FA TEEN HANGOUTS

Other Ways to Connect

There are many other platforms that individuals with FA and their families can use to connect with each other, both through FARA and externally. The Friedreich’s Ataxia Parents Group (FAPG) is a free international email-based support group for parents and guardians of children with FA or other childhood-onset/undiagnosed ataxias. The FAPG is run by a group of parents of individuals with FA.

Each month, FARA ambassadors host virtual Hangouts (for adults) and Teen Hangouts (for ages 13-19). FA Hangouts are an opportunity to hang out online for adults with Friedreich’s ataxia (caregivers to assist are welcome to accompany adults with FA). Teen Hangouts is an opportunity to hang out online for teens with ataxia, moderated by two adult FARA ambassadors. Visit the page to learn more about the schedule and guidelines.

Visit FAPG Website Learn more about FA Hangouts
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FOLLOW FARA FOR THE LATEST FA NEWS

Connect with FARA on Social

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Join FARA’s Community Newsletter

Stay up to date on the latest educational events for the FA community and more. FARA offers monthly newsletters for community members, researchers, FA advocates, and more. Choose your preferences using the form to the right and you’ll be on your way to staying connected and informed.

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