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

rideATAXIA Hometown logo
EVENT | Aug 11 2026

rideATAXIA Hometown — rideWILD: Haleakala

In Support of Friedreich's ataxia (FA) research, on August 11, 2026, we will ride our bikes to the top of a Volcano in Hawaii. Haleakala - Sea Level to 10,000' in 35 miles.

rideATAXIA Hometown
Haleakala, Maui, Hawaii
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Grassroots events logo
EVENT | Aug 15 2026

Saddle Up for FARA

Join the Edmonson Family for cocktails, dinner, and an exclusive trunk show with luxury western vendors flying in from across the country.

Grassroots
Bear Hill Cattle Company, Dade City
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FARA education logo
EVENT | Aug 20 2026

Community Conversations: FDA’s Accelerated Approval Pathway

Join us on Thursday, August 20, at 12 PM ET for FARA’s next Community Conversations webinar. This session will explore the FDA’s Accelerated Approval pathway and its role in advancing treatments for Friedreich's ataxia.

Education
Virtual
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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
Choctafaula Ranch, Auburn, Alabama
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rideATAXIA Hometown logo
EVENT | Aug 23 2026

rideATAXIA Hometown Cleveland

Join us on Saturday, August 23 for rideATAXIA Hometown Cleveland! Registration to open in June.

rideATAXIA
Berea, OH
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EVENT | Sep 3 2026

Living Life Happily: Access to a Cure

Living Life Happily: Access to a Cure, hosted by hosted by Peace Love ACCESSibility, brings our community together to support accessibility, inclusion, and research for a cure for people living with Friedreich’s ataxia.

Grassroots
The Owenego, Branford, Connecticut
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EVENT | Sep 11 2026

Tee It Up - Fall Flower, Pumpkin & Gourd Pick-Up

Purchase fall flowers, pumpkins and gourds to make a difference! Your purchase will make a difference for all living with Alzheimer’s/dementia “ALZ” and Friedreich’s ataxia “FA”.

Grassroots
1350 Arlington Avenue, Columbus
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EVENT | Sep 11 2026

GolfATAXIA

Proceeds from the GolfATAXIA Scramble will support the Friedreich’s Ataxia Research Alliance (FARA) in their efforts to find treatments and cures for FA

Grassroots
Brentwood Golf Club, White Lake
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EVENT | Sep 12 2026

Teeing Up for Tye

Teeing Up for Tye is a golf tournament in memory of Tye Bell, inspired by his passion for golf. Funds from Teeing Up for Tye will benefit the Tye Bell Memorial Scholarship and FARA.

Grassroots
Mill Creek Country Club, Salado, Texas
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EVENT | Sep 13 2026

Fuzzy Buzzy Charity Golf Tournament

The Fuzzy Buzzy Charity Golf Tournament is an annual event held every year since 1986.

Grassroots
Windham Country Club, Windham, New Hampshire
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rideATAXIA Hometown logo
EVENT | Sep 19 2026

rideATAXIA Hometown St. Louis

Join us Saturday, September 19th for a ride/walk to benefit FARA! Registration to open in June 2026.

rideATAXIA
Hammerstone’s, St. Louis, Missouri
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rideATAXIA Hometown logo
EVENT | Sep 19 2026

rideATAXIA Hometown Twin Cities

Join us Saturday, September 19 for a family-friendly ride along the Mississippi River Greenway Trail!

rideATAXIA
West Shelter – Spring Lake Park Reserve, Hastings, Minnesota
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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

Blog | Aug 3, 2026

Meet The Community: Donovan Simpson

Community
Read Story
Blog | Jul 27, 2026

Meet The Community: Savannah Glenn

Community
Read Story
Blog | Jul 20, 2026

Meet The Community: Hayden Howard

Community
Read Story
Blog | Jul 13, 2026

Meet The Community: Kanhaiya Lal Kumawat

Community
Read Story
Photo of Lilly Woods
Blog | Jul 6, 2026

Meet The Community 2: A Closer Look — Lilly Woods

Community
Read Story
Blog | Jul 2, 2026

A Reflection on Friedreich's Ataxia and Research from Sam Dupre

Community
Read Story
Photo of Deborah Medford
Blog | Jun 8, 2026

Meet The Community: Deborah Medford

Community
Read Story
Blog | Jun 1, 2026

Meet The Community: Kadence Foley

Community
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Photo of Carly and a horse
Blog | May 25, 2026

Meet The Community: Carly Stinson

Community
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photo of Shay
Blog | May 18, 2026

Meet The Community: Shay

Community
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Blog | May 11, 2026

Meet The Community: Christina Laurin

Community
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Blog | May 5, 2026

Meet The Community: Amelia and Laurel

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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