FARA

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FARA Together, we will cure Friedreich's ataxia! http://www.curefa.org

A sincere thank you to all the generous sponsors of the 2026 FARA Energy Ball!
10/23/2026

A sincere thank you to all the generous sponsors of the 2026 FARA Energy Ball!

Meet Maisie Rochat, who is running the 2026 TCS New York City Marathon as a member of Team FARA!Maisie is running in hon...
10/22/2026

Meet Maisie Rochat, who is running the 2026 TCS New York City Marathon as a member of Team FARA!

Maisie is running in honor of her friend, Annie, who lives with FA.

Maisie has already raised over $4,000 as part of her efforts! Support her fundraising page at https://give.curefa.org/fundraiser/7483590.

Join an upcoming virtual FA Hangout!Saturday, October 24, 9PM ET/6PM PTFA Hangouts are hosted by volunteer peers and are...
10/22/2026

Join an upcoming virtual FA Hangout!

Saturday, October 24, 9PM ET/6PM PT

FA Hangouts are hosted by volunteer peers and are open to adults living with Friedreich's ataxia. The upcoming session will talk about Halloween plans. Caregivers are welcome to accompany an individual with FA if communication assistance is needed.

To access the invitation link, email [email protected].

Please join us at McRae’s American Bistro & Cocktails on November 4, 2026, for a rideATAXIA Dallas Give Back Night! 📍McR...
10/22/2026

Please join us at McRae’s American Bistro & Cocktails on November 4, 2026, for a rideATAXIA Dallas Give Back Night!

📍McRae’s American Bistro & Cocktails: 9913 Garland Road, Dallas TX 75218
📅 November 4, 2026 from 5-10PM
🍽️ 25% of dinner food sales donated to FARA

Thank you to Penn/Baudin Families for a Cure for putting this fundraiser together!

Reservations Recommended. Walk-ins Welcome. Must mention Give Back Night.

Congratulations to The Highest Road film on its World Premiere this past weekend at the Newport Beach Film Festival in N...
10/21/2026

Congratulations to The Highest Road film on its World Premiere this past weekend at the Newport Beach Film Festival in Newport Beach, CA! Over 150 people, including 7 FA families and 3 industry partners, gathered at the historic Lido Theater for the premiere screening.

Read a review of the Highest Road from this weekend at https://www.onthereels.com/p/the-highest-road-breaks-new-ground.

Congratulations to Mayme Killeen for being selected as a 2026 RARE Artist Finalist for her art piece titled 17 Shoelaces...
10/21/2026

Congratulations to Mayme Killeen for being selected as a 2026 RARE Artist Finalist for her art piece titled 17 Shoelaces.

17 Shoelaces represents the period following Mayme’s diagnosis with FA. As she began using leg braces to help her walk, the braces often rubbed against her shoelaces, causing them to break. Some of those broken shoelaces are incorporated into this piece, reflecting that chapter of her journey.

Read more about Mayme's piece and vote for her to be one of the 2026 RARE Artist Awardees at https://ow.ly/a7MN50ZSpm3. Voting closes on October 23, 2026.

Sites in Florida, Illinois, New Jersey, and Texas are now recruiting for FORWARD-FA, a global study of nomlabofusp spons...
10/21/2026

Sites in Florida, Illinois, New Jersey, and Texas are now recruiting for FORWARD-FA, a global study of nomlabofusp sponsored by Larimar Therapeutics. Nomlabofusp aims to deliver human frataxin by daily injection of a recombinant fusion protein under the skin. Participation in the study involves daily doses of nomlabofusp or placebo for 72 weeks.

Eligible participants must be between 12-40 years old, have a genetic diagnosis of FA with two GAA repeat expansions, and be able to walk 25 feet with or without an assistive device within three minutes. Other eligibility criteria applies and will be assessed by a study doctor.

There are additional sites planned for this study both within and outside of the United States. FARA will continue to update the community as additional sites open.

Click https://ow.ly/Ft4I50ZFjtr for more details including site contact information and eligibility requirements.

Anyone considering participating in a clinical trial should discuss the matter with their physician. FARA does not endorse or recommend any particular studies.

Please welcome Noah Miller, another member of Team FARA running in the 2026 TCS New York City Marathon!Noah is a scienti...
10/20/2026

Please welcome Noah Miller, another member of Team FARA running in the 2026 TCS New York City Marathon!

Noah is a scientist at Lexeo Therapeutics, who has worked to design and optimize their manufacturing process for their FA Gene Therapy.

He has already raised over $3,000 as part of his efforts! Support his fundraising page at https://ow.ly/peYT50ZTIS8.

Check out the latest Ambassador blog post — a recap of the 2026 FA Symposium and rideATAXIA Philly!On Sunday, October 11...
10/19/2026

Check out the latest Ambassador blog post — a recap of the 2026 FA Symposium and rideATAXIA Philly!

On Sunday, October 11, rideATAXIA Philly was held at its usual location, Montgomery County Community College in Blue Bell, PA, and raised over $410K for FA research! The following day, on Monday, October 12, the 19th annual FARA & CHOP Symposium welcomed over 235 in-person attendees, including 35 individuals with Friedreich’s ataxia, as well as many participants who joined virtually.

Read the recap from FARA Ambassador Brittany Sommerfield at https://ow.ly/b39h50ZYXUa!

Despite the rainy weather, the spirit at rideATAXIA Philly this weekend was nothing short of amazing!The ride welcomed o...
10/16/2026

Despite the rainy weather, the spirit at rideATAXIA Philly this weekend was nothing short of amazing!

The ride welcomed over 500 participants, including 35 individuals living with FA. Together, we raised over $405,000 for FA research! From attendees, to volunteers, to our sponsors, it was a wonderful day of community.

Thank you all for your commitment to advancing treatments and a cure for FA.

Address

Downingtown, PA
19335

Telephone

+14848796160

Website

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