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
| 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
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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
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EVENT
| Aug 11 2024

Rock 'N' Jock Charities: Night of Entertainment

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

Rock 'N' Jock Charities: Golf Tournament

Grassroots, Potowomut Golf Club
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EVENT
| Aug 24 2024

FA Research Reception Tacoma

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

Education, Hotel Murano
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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
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EVENT
| Sep 13 2024

Golf-ATAXIA 18 Hole Scramble

Grassroots, Brentwood Golf Club
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EVENT
| Sep 14 2024

rideATAXIA Hometown Twin Cities

rideATAXIA, Wakefield Park Community Building
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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
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EVENT
| Sep 26 2024

Living with Purpose - An Evening to Cure FA

Help us Celebrate Life with Purpose. Hors D'oeuvres, Dinner, Dessert, Cash Bar, Raffle, Silent Auction, Complimentary holistic practicioners.

The Owenego
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EVENT
| Oct 5 2024

Epic Game Day

Play board games to Cure FA!

Grassroots, Natural Twenty Games
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EVENT
| Oct 6 2024

rideATAXIA Philly

Save the Date! Registration to open in June.

rideATAXIA, Montgomery County Community College
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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 Elvis Trompf DJ-ing
Blog
| Jul 22, 2024

Meet the Community – Elvis Trompf

Community
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Photo of Caroline Spencer with husband and dog
Blog
| Jul 15, 2024

Meet the Community – Caroline Spencer

Community
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Photo of Marieke van Driel
Blog
| Jul 8, 2024

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

Community
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photo of Claire Juip
Blog
| Jul 1, 2024

Meet the Community – Claire Juip

Community
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Photo of Kyle Duhon and two puppies
Blog
| Jun 17, 2024

Meet the Community – Kyle Duhon

Community
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Photo of Hayden Clay Rogers
Blog
| Jun 10, 2024

Meet the Community – Hayden Clay Rogers

Community
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Photo of Anita Gracey
Blog
| Jun 3, 2024

Meet the Community – Anita Gracey

Community
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Photo of Tyler Ray Rogers
Blog
| May 28, 2024

Meet the Community – Tyler Ray Rogers

Community
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Photo of Bernie Metz
Blog
| May 20, 2024

Meet the Community – Bernhard "Bernie" Metz

Community
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Photo of Jason Drake
Blog
| May 2, 2024

Meet the Community – Jason Drake

Community
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Photo of Gabriel Queiroz Pereira and Fernanda Cenci Queiroz
Blog
| Apr 15, 2024

Meet the Community – Gabriel Queiroz Pereira & Fernanda Cenci Queiroz

Community
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Photo of Joe Tyler and his wife
Blog
| Apr 1, 2024

Meet the Community – Joe Tyler

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 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
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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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