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.

Learn About FA Community Events Find a Community Event Near You
Party image

Upcoming Community Events

FARA education logo
EVENT | Apr 26 2025

FA Research Reception – Charlotte, NC

The Friedreich’s Ataxia Research Alliance (FARA) is pleased to present this free, in-person educational event for the FA community in Charlotte, NC. 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
Charlotte Marriott SouthPark Hotel, Charlotte, North Carolina
View event details
Grassroots events logo
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
View event details
Grassroots events logo
EVENT | May 6 2025

Raise A Glass to FARA - Wine Tasting

Raise a glass to FARA with a wine tasting at Gooseneck Vineyards! $30 Admission includes a aomplimentary glass of wine and appetizers.

Grassroots
Gooseneck Vineyards, North Kingstown, Rhode Island
View event details
FARA education logo
EVENT | May 7 2025

FARA Flash Talks Session #1

Education
Virtual
View event details
rideATAXIA Hometown logo
EVENT | May 10 2025

rideATAXIA Hometown Chico

Join us on May 10 for a pre-Mother's Day family-friendly ride!

rideATAXIA Hometown
Bidwell Park, Chico, California
View event details
Logo for Education Event with Pharma
EVENT | May 15 2025

An Informational Session with Lexeo Therapeutics

Education
Virtual
View event details
rideATAXIA Hometown logo
EVENT | May 17 2025

rideATAXIA Hometown San Luis Obispo

Join us for a fun 5-mile ride or 1-mile walk on the Bob Jones Trail in beautiful Avila Beach and then stay for a celebration at Mulligan's (food and drink for purchase).

rideATAXIA Hometown
Mulligan’s Restaurant, Avila Beach
View event details
Grassroots events logo
EVENT | May 17 2025

New Jersey Seaside Stride

The NJ Seaside Stride is a fun, family-oriented event hosted by NJ families working to raise awareness and research funds for FA. The event features a walk on the boardwalk, lunch, and gift auction.

Grassroots
Tri-Boro First Aid Squad, Seaside Park, New Jersey
View event details
rideATAXIA Hometown logo
EVENT | May 19 2025

rideATAXIA Hometown Danville

rideATAXIA
Danville, CA, Danville, California
View event details
Logo for Education Event with Pharma
EVENT | May 22 2025

An Informational Session with Biogen

Education
Virtual
View event details
FARA education logo
EVENT | May 28 2025

FARA Flask Talks Session #2

Education
View event details
Grassroots events logo
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
View event details
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 Sydni Dupre
Blog | Apr 21, 2025

Meet the Community: Sydni Dupre

Community
Read Story
Photo of Natalija Stanojevic
Blog | Apr 7, 2025

Meet the Community: Natalija Stanojevic

Community
Read Story
Two photos of Tyler
Blog | Mar 31, 2025

Meet the Community: Tyler and Amanda

Community
Read Story
Blog | Mar 25, 2025

Meet the Community: Julie Haffner

Community
Read Story
Photo of Sam Dupree
Blog | Mar 17, 2025

Meet the Community: Sam Dupre

Community
Read Story
Photo of Sienna Helms
Blog | Feb 24, 2025

Meet the Community: Sienna Helms

Community
Read Story
Blog | Feb 20, 2025

Giving Back Through Surgical Tissue Donation by Jake Juip

Community
Read Story
Photo of Matt LaFleur and his new book about Friedreich's Ataxia
Blog | Feb 10, 2025

Meet the Community 2: A Closer Look – Matthew LaFleur

Community
Read Story
Photo of Christian Haun
Blog | Feb 3, 2025

Meet The Community: Christin Haun

Community
Read Story
ICAR 2024 patient panel
Blog | Jan 14, 2025

Living with FA, Leading in Research: FA Patient-Researchers Present at ICAR 2024

Community, Research
Read Story
Photo of Aidan LeCompte
Blog | Nov 11, 2024

Meet The Community: Aidan LeCompte

Community
Read Story
Photo of Daniel Huber
Blog | Oct 28, 2024

Meet The Community: Daniel Huber

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 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 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
FOLLOW FARA FOR THE LATEST FA NEWS

Connect with FARA on Social

FaceBook logo

Facebook
Instagram logo

Instagram
YouTube logo

YouTube
LinkedIn logo

LinkedIn
X Twitter logo

X/Twitter

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.

Subscribe

Email Lists

Terms & Conditions