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

09/07/2026

Introducing your step-by-step guide to hosting your very own rideATAXIA Hometown event! 🚲

No matter the size or style of your event, the FARA team is here to support you every step of the way and help bring rideATAXIA to your hometown.

Planning for 2027 events starts NOW! If you are interested in hosting a Hometown event, reach out to [email protected] to begin planning or visit curefa.org/hometown for more information.

Join an upcoming virtual FA Hangout!Wednesday, September 9, 8PM ET/5PM PTSunday, September 27, 1PM ET/10AM PTFA Hangouts...
09/04/2026

Join an upcoming virtual FA Hangout!

Wednesday, September 9, 8PM ET/5PM PT
Sunday, September 27, 1PM ET/10AM PT

FA Hangouts are hosted by volunteer peers and are open to adults living with Friedreich's ataxia. The session on September 9 will talk about relationships and dating with FA. Caregivers are welcome to accompany an individual with FA if communication assistance is needed.

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

The FARA Grant Program is proud to award a Award for Innovative Mindset (AIM) to Nicholas Goeden, PhD, at Asymptote Gene...
09/04/2026

The FARA Grant Program is proud to award a Award for Innovative Mindset (AIM) to Nicholas Goeden, PhD, at Asymptote Genetic Medicines Inc, Pasadena, CA, to develop precision gene therapy technologies that enable safe, controlled frataxin expression throughout the central nervous system and peripheral tissues in Friedreich’s ataxia.

Learn more about this grant and other FARA-funded research at https://ow.ly/nCAa50ZG7TH

Join Lexeo Therapeutics for an informational webinar on Friday, September 25 at 12PM ET. During the webinar, Dr. Gregory...
09/04/2026

Join Lexeo Therapeutics for an informational webinar on Friday, September 25 at 12PM ET.

During the webinar, Dr. Gregory Aubert, VP of Clinical Development at Lexeo, and Dr. Theresa Zesiewicz, Director of the Ataxia Research Center at the University of South Florida, will share information about Lexeo's SUNRISE-FA 2 investigational gene therapy trial, a late-stage clinical trial to evaluate whether LX2006 may improve heart function and limit the progression of Friedreich ataxia cardiomyopathy (FA-CM).

This webinar is intended for people living with FA and their families.

Register at https://ow.ly/OP1r50ZETnV

Every few weeks, we spotlight a member of the team helping move FARA's mission forward. This week, we're turning the tab...
09/03/2026

Every few weeks, we spotlight a member of the team helping move FARA's mission forward. This week, we're turning the tables and celebrating the person who writes those stories: Maureen Juip.

Maureen generously gives her time to FARA and the entire FA family, always putting others first. As a volunteer on FARA's Communications team, Maureen focuses on bringing scientific updates and educational resources to the FA community. Her clear vision and thoughtful communication help ensure that important messages resonate across our community and with different stakeholders.

As a parent of two children living with FA, she also brings a deeply personal perspective to her work. She believes progress begins with informed, engaged advocates, and she and her family consistently lead by example, volunteering to speak on panels, participating in advocacy initiatives, and sharing their story to raise awareness.

In addition to the many hats she wears, Maureen serves as Secretary of FARA's Board of Directors, helping guide and support the organization's mission.

Outside of FARA, Maureen enjoys family dinners, competitive games of Settlers of Catan with her husband and five children, playing tennis, traveling, and building meaningful connections with other FA families.

We're grateful for all the ways Maureen helps educate, inspire, and strengthen our community.

Federal research funding helps drive progress toward treatments and cures for Ataxia. We want to make sure that research...
09/03/2026

Federal research funding helps drive progress toward treatments and cures for Ataxia. We want to make sure that research continues to be guided by science.

On September 23, Ataxia advocates will ask Congress to block a proposed OMB rule that could significantly change how federal grants are awarded and managed, including grants that support medical research.

It’s one of the ways our community will speak up for the future of Ataxia research during United Against Ataxia Hill Day.

Columbia University in New York, NY is currently recruiting participants for a study that aims to understand whether car...
09/02/2026

Columbia University in New York, NY is currently recruiting participants for a study that aims to understand whether cardiac output and fatigue in FA are impacted by aerobic exercise with and without the use of omaveloxolone.

This study is recruiting individuals with FA who are 13 years old and older, are able to walk with or without a walking aid, and able to sit safely on a stationary recumbent bike. This study aims to recruit both individuals who are not taking omaveloxolone as well as individuals who are taking omaveloxolone as prescribed by their doctors. Omaveloxolone will not be provided through this study. Additional eligibility criteria may apply and will be evaluated by a study doctor.

Participation in the study involves four visits to the study site for fitness tests on a stationary recumbent bike and other study assessments as well as adherence to an at home exercise regimen. Study participants are provided with travel compensation as well as a Fitbit and a recumbent bike for exercise at home.

For more information visit https://ow.ly/rl1450ZkIl7.

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

Need a bike rental for rideATAXIA Philly? 🚲Road bikes and hybrids are available from Bikesport and e-bikes are available...
09/01/2026

Need a bike rental for rideATAXIA Philly? 🚲

Road bikes and hybrids are available from Bikesport and e-bikes are available from Whitemarsh.

All rentals will be delivered to the event site on the day of the ride.

Read the details, including deadlines and cost, and reserve a rental bike at https://ow.ly/M1Vu50ZBBYP

In today's  , we spoke with Annette of Louisiana. Annette is passionate about maintaining an active lifestyle and enjoys...
08/31/2026

In today's , we spoke with Annette of Louisiana. Annette is passionate about maintaining an active lifestyle and enjoys weight training, rowing, cycling, and using her SkiErg machine. She shares that FA has led her to become more intentional in planning her days. To better understand and optimize her energy throughout the day, she keeps a journal tracking her daily activities, diet, and physical symptoms.

"Do the hard things, face the challenges, and learn from experiencing adversity," she says. "I am not defined by a diagnosis."

Read Annette's story at https://ow.ly/QkHu50ZGBJc ‎

Today is the LAST DAY to register for Hill Day 2026! Join FARA and NAF for the 8th annual United Against Ataxia Hill Day...
08/31/2026

Today is the LAST DAY to register for Hill Day 2026! Join FARA and NAF for the 8th annual United Against Ataxia Hill Day on September 23, 2026.

Hill Day is a virtual event that gives advocates the opportunity to raise awareness about Ataxia and advocate for legislative changes that directly impact ataxia drug development.

Register now: https://ow.ly/HPI050ZxNnB
Learn more about Hill Day: https://ow.ly/jkLc50ZxNnC

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