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
| Jul 20 2024

FA Research Reception Chicago

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, Hyatt Regency Lisle
EVENT
| Jul 21 2024

rideATAXIA Chicago

Registration now open!

rideATAXIA, Channahon Central Park
EVENT
| Jul 26 2024

Fine Arts for FA: Curtain Call for a Cure

Curtain Call for a Cure is a cabaret filled with musical numbers from everyone’s favorite broadway shows, put on entirely by students from the Sioux Falls area.

Grassroots, Lincoln High School
EVENT
| Jul 27 2024

Fine Arts for FA: Curtain Call for a Cure

Curtain Call for a Cure is a cabaret filled with musical numbers from everyone’s favorite broadway shows, put on entirely by students from the Sioux Falls area.

Grassroots, Lincoln High School
EVENT
| Aug 2 2024

Daniel Price Streaming Live

The Friedreich's ataxia community outreach Facebook Group will host a one-hour live music performance to raise money to help fund research for FARA. Music will be Electronic Dance/Ambient soundscapes by Daniel Price. Music will be performed via Facebook live broadcast. This event is available online to the general public and is suitable for all ages.

Grassroots, Virtual
EVENT
| Aug 11 2024

Rock 'N' Jock Charities: Night of Entertainment

Grassroots, Garden Pavilion, Crowne Plaza
EVENT
| Aug 12 2024

Rock 'N' Jock Charities: Golf Tournament

Grassroots, Potowomut Golf Club
EVENT
| Aug 24 2024

FA Research Reception Tacoma

Registration, hotel block, and full agenda will be available soon.

Education, Hotel Murano
EVENT
| Sep 8 2024

Fuzzy Buzzy Charity Golf Tournament

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

Grassroots, Windham
EVENT
| Sep 13 2024

Golf-ATAXIA 18 Hole Scramble

Grassroots, Brentwood Golf Club
EVENT
| Sep 14 2024

rideATAXIA Hometown Twin Cities

rideATAXIA, Wakefield Park Community Building
EVENT
| Sep 21 2024

Race for Matt & Grace

Join the families of FA patients Matt DiIorio, Grace Hopkins, and Alex Fielding at Rhode Island College in Providence for the Annual 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
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
| Jul 15, 2024

Meet the Community – Caroline Spencer

Community
Blog
| Jul 8, 2024

Meet the Community 2: A Closer Look – Marieke van Driel

Community
Blog
| Jul 1, 2024

Meet the Community – Claire Juip

Community
Blog
| Jun 17, 2024

Meet the Community – Kyle Duhon

Community
Blog
| Jun 10, 2024

Meet the Community – Hayden Clay Rogers

Community
Blog
| Jun 3, 2024

Meet the Community – Anita Gracey

Community
Blog
| May 28, 2024

Meet the Community – Tyler Ray Rogers

Community
Blog
| May 20, 2024

Meet the Community – Bernhard "Bernie" Metz

Community
Blog
| May 2, 2024

Meet the Community – Jason Drake

Community
Blog
| Apr 15, 2024

Meet the Community – Gabriel Queiroz Pereira & Fernanda Cenci Queiroz

Community
Blog
| Apr 1, 2024

Meet the Community – Joe Tyler

Community
Blog
| Mar 18, 2024

Meet the Community – Rina

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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