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 | Feb 1 2025

Runway to the Cure

Join us on February 1, 2025, from 6-10 PM for Runway to the Cure at Banyan Air in Ft. Lauderdale, FL. Enjoy dinner, a silent auction, and music while supporting Friedreich’s Ataxia research!

Grassroots
Banyan Air, Fort Lauderdale, Florida
EVENT | May 3 2025

BBQ Love Fest

BBQ Love Fest was born out of the love of Bar-B-Que, with renowned pitmasters from all over the country. Along with local Cook Teams competing for your vote as who is the best local pitmaster. Mix incredible music all day long and find out how Tampa does BBQ Love Fest. BBQ Love Fest is more than a good time, it’s a philanthropic event that supports FARA.

Grassroots
Perry Harvey Sr. Park, Tampa
EVENT | Jun 7 2025

Cure FA Soirée

The 8th 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
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 | Nov 11, 2024

Meet The Community: Aidan LeCompte

Community
Blog | Oct 28, 2024

Meet The Community: Daniel Huber

Community
Blog | Oct 21, 2024

Meet The Community: Kendall Harvey

Community
Blog | Oct 4, 2024

Meet the Community 2: A Closer Look — Alijana Shakya 

Community
Blog | Sep 23, 2024

Meet the Community 2: A Closer Look – Alex Fielding

Community
Blog | Sep 16, 2024

Meet the Community: Allison Rice

Community
Blog | Sep 9, 2024

Meet the Community: Anthony Monaco

Community
Blog | Sep 3, 2024

Meet the Community 2: A Closer Look – Shelby Wright

Community
Blog | Aug 26, 2024

Meet the Community 2: A Closer Look – Richard Brown

Community
Blog | Aug 20, 2024

Meet the Community – Leticia Lima Mota

Community
Blog | Aug 12, 2024

Meet the Community – Mekayla Holm

Community
Blog | Jul 29, 2024

Meet the Community – Xande Fateicha

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 finding treatments and cures for FA. 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 is an opportunity to hangout online for adults with any kind of ataxia and their friends, family, or caregivers. Contact dillon.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
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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