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
Team of people
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.

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Upcoming Community Events

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
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, Ohio
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, Michigan
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
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
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
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
EVENT | Sep 20 2026

Team FARA: Rare Link Triathlon Relay

Team FARA's Rare Link, led by Liam Kruesi, will be completing a triathlon relay-style.

Grassroots
Bayview Park, Long Beach, New Jersey
EVENT | Sep 26 2026

Race for Matt & Grace

5K and Family Fun Walk to cure FA

Grassroots
Rhode Island College, Providence
EVENT | Oct 11 2026

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
Montgomery County Community College, Blue Bell, Pennsylvania
EVENT | Oct 12 2026

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
EVENT | Oct 17 2026

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
USF Health Morsani College of Medicine & Heart Institute, Tampa
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.

Team of pople at event

Meet the Community

Blog | Aug 31, 2026

Meet the Community: Annette

Community
Blog | Aug 24, 2026

Meet the Community: Laxmi Singh

Community
Blog | Aug 17, 2026

Meet The Community: Kiersten Riggs

Community
Blog | Aug 10, 2026

Meet The Community: Antonio José Matos Moreira

Community
Blog | Aug 3, 2026

Meet The Community: Donovan Simpson

Community
Blog | Jul 27, 2026

Meet The Community: Savannah Glenn

Community
Blog | Jul 20, 2026

Meet The Community: Hayden Howard

Community
Blog | Jul 13, 2026

Meet The Community: Kanhaiya Lal Kumawat

Community
Blog | Jul 6, 2026

Meet The Community 2: A Closer Look — Lilly Woods

Community
Blog | Jul 2, 2026

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

Community
Blog | Jun 8, 2026

Meet The Community: Deborah Medford

Community
Blog | Jun 1, 2026

Meet The Community: Kadence Foley

Community
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
FA AppStore logo
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.

FA Hangouts logo

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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