FARA

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

ARIES (Assessing Real-World Experiences on SKYCLARYS®) is a three-year, remote, non-interventional research study for in...
06/02/2026

ARIES (Assessing Real-World Experiences on SKYCLARYS®) is a three-year, remote, non-interventional research study for individuals living with FA that have been prescribed or are taking SKYCLARYS® (omaveloxolone). This study is being run by Biogen and PicnicHealth.

Through the ARIES study, PicnicHealth securely collects your medical records and additional information you provide from short surveys you'll complete every 3 months. The ARIES Study will only review de-identified survey answers, data from Fitbit, and your medical records produced during your regular visits to the doctor.

The study is recruiting individuals who are 16 years or older, reside in the U.S., and are prescribed SKYCLARYS. Participants will receive $120 via an e-gift card upon eligibility confirmation plus additional compensation for completing surveys throughout the study.

Learn more or join the study at go.pic.nc/oab.

Check out this exciting lineup of upcoming FA community events! Explore the full calendar at curefa.org/events.9th Annua...
06/02/2026

Check out this exciting lineup of upcoming FA community events! Explore the full calendar at curefa.org/events.

9th Annual Race for Matt & Grace Golf Tournament
June 1, 2026
East Greenwich, RI

Fine Arts for FA: School of Rock The Musical
June 5-7, 2026
Sioux Falls, SD

Oklahoma City FA Research Reception
June 13, 2026
Oklahoma City, OK

Cure FA Soirée
June 13, 2026
Oklahoma City, OK

44th Annual Claxton Classic Golf Tournament
July 17, 2026
Pasadena, MD

rideATAXIA Chicago
July 19, 2026
Channahon, IL

FA Fest
July 25, 2026
Edina, MN

On May 28, FARA Director of Advocacy Brigid Brennan spoke on a panel titled "How Patient Advocacy Accelerates Early-Stag...
06/01/2026

On May 28, FARA Director of Advocacy Brigid Brennan spoke on a panel titled "How Patient Advocacy Accelerates Early-Stage R&D” at the 2026 Yale Innovation Summit. The Yale Innovation Summit is the Northeast’s largest innovation event and brings together experts in arts, biotech, civic, climate, health, and tech. Thank you to Yale Ventures for having us!

In today's , we spoke with Kadence Foley of Canada. When she's not working out or hanging out with friends, you can fin...
06/01/2026

In today's , we spoke with Kadence Foley of Canada. When she's not working out or hanging out with friends, you can find Kadence drawing or building legos!

Kadence talks about her experience transitioning from walking to becoming a full-time wheelchair user, explaining how she leaned on her friends and teachers during that transition. She shares, "Even though I may be in a chair and unable to do the things everyone else can do, I'm still human, I may have more needs than others, but that doesn’t make me different from other people."

Read Kadence's story at https://ow.ly/luVZ50Z6hAR

A reminder to register for rideATAXIA Hometown Boston 2026! Join us at Lexington Visitors Center Lawn (1875 Massachusett...
05/29/2026

A reminder to register for rideATAXIA Hometown Boston 2026!

Join us at Lexington Visitors Center Lawn (1875 Massachusetts Ave, Lexington, MA 02420) on Sunday, August 2!

Register now at give.curefa.org/boston.

Join FA Teen Hangouts on Thursday, June 11, to talk about adaptive travel!🗓️ Date: Thursday, June 11, 2026⏰ Time: 7PM ET...
05/29/2026

Join FA Teen Hangouts on Thursday, June 11, to talk about adaptive travel!

🗓️ Date: Thursday, June 11, 2026
⏰ Time: 7PM ET

👥 Age Group: Teens ages 13 to 19 (Please note: teens of all ages will be together)

❓Questions? Ready to sign up? Email: [email protected]

📝 Consent Form: Anyone under 18 years of age will need to have their parents or guardian sign a consent form.

Teen Hangouts are led by volunteers from the FARA Ambassador program.

Allison Rice helps make sure every donation gets where it’s intended to go. As an Accounting Associate, Allison works be...
05/28/2026

Allison Rice helps make sure every donation gets where it’s intended to go.

As an Accounting Associate, Allison works behind the scenes to ensure donations are accurately attributed to the correct account, event, or program. Her careful attention to detail helps make sure donor dollars are stewarded to support the research and programs that move FARA’s mission forward.

Her work may happen quietly in the background, but it plays an important role in helping FARA focus resources on the search for treatments and a cure for FA.

Allison also brings a personal connection to the mission. She is living with FA and has been a dedicated FARA Ambassador for many years.

Outside of work, Allison enjoys spending time with her kids and working in the garden.

Join an upcoming virtual FA Hangout!Sunday, May 31, 1PM ET/10AM PTFA Hangouts are hosted by volunteer peers and are open...
05/28/2026

Join an upcoming virtual FA Hangout!

Sunday, May 31, 1PM ET/10AM PT

FA Hangouts are hosted by volunteer peers and are open to adults living with Friedreich's ataxia. The upcoming session will discuss accessible travel. (Caregivers are welcome to accompany an individual with FA, if communication assistance is needed.)

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

FARA-funded research has revealed new findings on the genetics of FA.Inspired by observations from the FA natural histor...
05/27/2026

FARA-funded research has revealed new findings on the genetics of FA.

Inspired by observations from the FA natural history study about individuals reported to have two identical GAA repeat lengths, Dr. Sanjay Bidichandani, MBBS, PhD, and his team became curious about the DNA sequence of the GAA repeat expansion. They found that for approximately 20% of people with FA, the GAA repeat on one of their FXN genes is interrupted by another genetic sequence called GGA triplets. An additional 10% of people with FA have other minor sequence interruptions.

This discovery was published in the Journal of Human Molecular Genetics (https://ow.ly/bEwK50Z4URn), and Dr. Bidichandani described this work during the 2025 FA Philly Symposium (https://ow.ly/ABrX50Z4URm).

This work is notable because it redefines the spectrum of disease-causing mutations in the FXN gene and has implications for genetic testing for both people with FA and potential carriers. Questions about this new research should be discussed with a genetic counselor. (https://ow.ly/3TMj50Z4URp).

Thank you to everyone who participates in the UNIFAI Natural History Study! Your participation sparks the questions that lead to our deeper understanding of FA. (https://ow.ly/51w250Z4URo)

Thanks, too, to everyone who helps fundraise for FARA. Your generosity makes research possible.

The Neurobooth research team at Massachusetts General Hospital Neurology Clinic is recruiting participants for a new obs...
05/27/2026

The Neurobooth research team at Massachusetts General Hospital Neurology Clinic is recruiting participants for a new observational study. This study aims to create technologies that can detect early FA symptoms and support the development of potential treatments.

Individuals with FA between 8-30 years old who are able to walk with or without an assistive device are eligible for the study. The study team is also recruiting healthy controls. This is a new study and individuals who have previously participated in Neurobooth may be eligible to enroll.

Participation in the study involves four visits to Boston, Massachusetts over the course of 2 years. During study visits participants will perform several neurological tasks while wearing digital sensors. Participants will be compensated with a $100 gift card for each visit and will receive up to $800 of travel reimbursement per visit.

Learn more about the study at https://ow.ly/BJJ550WNAgC.

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

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