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

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EVENT | Aug 16 2025

8th Annual Race for Matt & Grace Golf Tournament

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

Grassroots
Valley Country Club, Warwick
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EVENT | Aug 17 2025

Softball Clinic for a Cause

Run by Paige Kussman, former D3 Coach and Personal Trainer. Hosted by Fury Platinum 14U Slaught.

Grassroots
Bolen Park Field #4, Leesburg, Virginia
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EVENT | Aug 24 2025

Team FARA: Liam Kruesi Aquabike Race

Team FARA Member Liam Kruesi will be the first person living with FA to race in the Aquabike of the Fort De Soto Triathlon Series in St. Petersburg, FL.

Grassroots
Fort De Soto Park, St. Petersburg
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EVENT | Sep 7 2025

Fuzzy Buzzy Charity Golf Tournament 2025

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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EVENT | Sep 12 2025

Tee It up Fall Flower Sale Delivery Day

Decorate your gardens with Mums, Celosia aka Cockscomb, Ornamental Cabbage/Kale, Ornamental Peppers, Pumpkins and Gourds. Your purchase will make a difference for all living with Alzheimer’s/dementia “ALZ” and Friedreich’s ataxia “FA”.

Grassroots
Grandview Heights and Marble Cliff
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EVENT | Sep 13 2025

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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rideATAXIA Hometown logo
EVENT | Sep 13 2025

rideATAXIA Hometown Cleveland

Ride along the beautiful Cleveland Metroparks towpath to help CURE FA!

rideATAXIA
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FARA advocacy logo
EVENT | Sep 17 2025

7th United Against Ataxia Hill Day

Advocacy
Virtual
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EVENT | Sep 20 2025

Race for Matt & Grace

This daylong event features a 5K, 1.5 Mile Fun Walk and an after-party with food and live entertainment.

Grassroots
Rhode Island College, Providence
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rideATAXIA Hometown logo
EVENT | Sep 21 2025

rideATAXIA Hometown Twin Cities

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

rideATAXIA
Schaar’s Bluff Gathering Center, Hastings
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FARA education logo
EVENT | Sep 27 2025

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
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FARA Energy Ball
EVENT | Sep 27 2025

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
Tampa Marriott Water Street, Tampa, Florida
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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 Carla Poletti
Blog | Aug 11, 2025

Meet the Community: Carla Poletti

Community
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Photo of Carrie Bolinger
Blog | Aug 4, 2025

Meet the Community: Carrie Bolinger

Community
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Photo of Tiffany Nash Fransen
Blog | Jul 28, 2025

Meet the Community: Tiffany Nash Fransen

Community
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Blog | Jul 21, 2025

Meet the Community: Alexander, Marion, and Oliver

Community
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Photo of Anna Morrow
Blog | Jul 15, 2025

Meet the Community: Anna Morrow

Community
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Photo of Megan Ploch
Blog | Jul 7, 2025

Meet the Community: Megan Ploch

Community
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Photo of Kailey Newcity
Blog | Jun 30, 2025

Meet the Community: Kailey Newcity

Community
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Blog | Jun 16, 2025

Meet the Community: Mark Kuchmas

Community
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image of Luciana Grasiele Nogueira
Blog | Jun 9, 2025

Meet the Community: Luciana Grasiele Nogueira

Community
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Blog | Jun 2, 2025

Meet the Community: Alyssa Hammers

Community
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Photo of Christi Wilson
Blog | May 27, 2025

Meet the Community: Christi Wilson

Community
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Blog | May 19, 2025

Meet the Community: Talia Cassel

Community
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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 finding treatments and cures for FA. 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 is an opportunity to hangout online for adults with any kind of ataxia and their friends, family, or caregivers. Contact fahangouts@gmail.com to get more information and join the email list. Teen Hangouts is an opportunity to hang out online for teens with ataxia, moderated by two adult FARA ambassadors. Contact farateenhangouts@gmail.com for more information.

Visit FAPG Website
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FOLLOW FARA FOR THE LATEST FA NEWS

Connect with FARA on Social

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LinkedIn
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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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