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
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Upcoming Community Events

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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, Providence
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rideATAXIA Hometown logo
EVENT | Sep 21 2024

rideATAXIA Hometown Ann Arbor

rideATAXIA
Dexter, MI, Dexter, Michigan
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Pharma-Hosted Education Event Logo
EVENT | Sep 24 2024

An Informational Webinar hosted by Lexeo Therapeutics

Lexeo Therapeutics will be hosting this webinar to share information and preliminary data from their phase 1/2 trial of LX2006, a gene therapy that targets the heart.

Education
Virtual
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FARA advocacy logo
EVENT | Sep 25 2024

6th United Against Ataxia Hill Day

Advocacy
Virtual
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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, Branford
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EVENT | Sep 28 2024

Drive-In Movie Fundraiser for FARA

Join us for a great cause and a fun night at the drive-in! Admission includes movie screening, popcorn, and soda.

Grassroots
Parking Lot of FBMJ’s Offices, Livonia, Michigan
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rideATAXIA Hometown logo
EVENT | Oct 5 2024

rideATAXIA Hometown Sunnyvale

rideATAXIA
Sunnyvale, CA, Sunnyvale, California
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Grassroots events logo
EVENT | Oct 5 2024

Epic Game Day

Play board games to Cure FA!

Grassroots
Natural Twenty Games, Henderson
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rideATAXIA Philly logo
EVENT | Oct 6 2024

rideATAXIA Philly

Save the Date! Registration to open in June.

rideATAXIA
Montgomery County Community College, Blue Bell, Pennsylvania
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FARA education logo
EVENT | Oct 7 2024

FARA & CHOP FA Symposium

The FA Symposium is a day-long event that provides 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. There is an option to participate in-person or virtually.

Education
Crowne Plaza – King of Prussia, King of Prussia, Pennsylvania
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FARA Energy Ball
EVENT | Oct 19 2024

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
JW Marriott Tampa Water Street, Tampa, Florida
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rideATAXIA Dallas logo
EVENT | Nov 2 2024

rideATAXIA Dallas

rideATAXIA
Lewisville Railroad Park, Lewisville, Texas
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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 Allison Rice
Blog | Sep 16, 2024

Meet the Community: Allison Rice

Community
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Photo of Anthony Monaco working out
Blog | Sep 9, 2024

Meet the Community: Anthony Monaco

Community
Read Story
Photo of Shelby Wright in graduation cap and gown.
Blog | Sep 3, 2024

Meet the Community 2: A Closer Look – Shelby Wright

Community
Read Story
Photo of Richard Brown reading his book on publish day
Blog | Aug 26, 2024

Meet the Community 2: A Closer Look – Richard Brown

Community
Read Story
Blog | Aug 20, 2024

Meet the Community – Leticia Lima Mota

Community
Read Story
Photo of Mekayla Holm at a baseball game
Blog | Aug 12, 2024

Meet the Community – Mekayla Holm

Community
Read Story
Photo of Xande Fateicha
Blog | Jul 29, 2024

Meet the Community – Xande Fateicha

Community
Read Story
Photo of Elvis Trompf DJ-ing
Blog | Jul 22, 2024

Meet the Community – Elvis Trompf

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

Meet the Community – Caroline Spencer

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

Meet the Community – Kyle Duhon

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
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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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Facebook
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Instagram
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YouTube
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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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