National Ataxia Foundation

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National Ataxia Foundation Our Vision: A World Without Ataxia. https://www.ataxia.org/about-naf/

Lexeo Therapeutics is conducting a late-stage clinical trial to evaluate whether the investigational gene therapy, LX200...
14/10/2026

Lexeo Therapeutics is conducting a late-stage clinical trial to evaluate whether the investigational gene therapy, LX2006, may improve heart function and limit the progression of Friedreich ataxia cardiomyopathy (FA-CM).
The study is a global study with multiple locations across the U.S. and will first enroll individuals aged 16 years and older, followed by children aged 6 to under 16 years of age.

If you are a diagnosed individual or caregiver who would like to learn more about this trial, visit: https://trials.lexeotx.com/clinical-trials/sunrise-fa2/

Together, our Walk N' Roll community raised over $40,000 to support the mission of the National Ataxia Foundation.Thank ...
14/10/2026

Together, our Walk N' Roll community raised over $40,000 to support the mission of the National Ataxia Foundation.

Thank you to everyone who walked, rolled, donated, volunteered, and cheered us on. Your support helps bring hope to the Ataxia community every day.

Thank you, Richfield! 🎳A heartfelt thank you to everyone who supported and helped raise awareness for Ataxia. Special ...
14/10/2026

Thank you, Richfield! 🎳

A heartfelt thank you to everyone who supported and helped raise awareness for Ataxia. Special thanks to Mark Minkin for organizing such a wonderful event and to everyone who showed up, bowled, volunteered, and gave back.

Learning from one another is one of the strengths of our community.Take a look at this helpful tip shared by someone liv...
13/10/2026

Learning from one another is one of the strengths of our community.

Take a look at this helpful tip shared by someone living with Ataxia. 👇

Have a tip to share? Visit ataxia.org/tips

🎉Congratulations to our 2026 Extreme Hike team!Through every mile of the journey, this team helped raise awareness of At...
13/10/2026

🎉Congratulations to our 2026 Extreme Hike team!

Through every mile of the journey, this team helped raise awareness of Ataxia and advance our shared mission. Despite challenging weather conditions, they kept moving forward, coming together to support the Ataxia community and raise funds for NAF's work.

We're proud to celebrate this incredible accomplishment and grateful to have you as part of our community.

Living with Ataxia can mean facing changes that make everyday tasks more difficult.For Sandy, living with SCA1 has meant...
12/10/2026

Living with Ataxia can mean facing changes that make everyday tasks more difficult.

For Sandy, living with SCA1 has meant giving up work and many of the activities he once enjoyed. He reminds others that no two days are the same and encourages people to be patient, as some things simply take more time.

Read Sandy’s full story: https://www.ataxia.org/sandy-wilson/

Together, we're making ataxia impossible to ignore.Congratulations to the Denver and Colorado Springs Support Groups for...
12/10/2026

Together, we're making ataxia impossible to ignore.

Congratulations to the Denver and Colorado Springs Support Groups for helping secure four proclamations recognizing Ataxia Awareness Day in Colorado. We are grateful for this community's dedication to raising awareness and driving change.

Join Lexeo Therapeutics for an informational webinar about the latest developments in its Friedreich ataxia (FA) gene th...
09/10/2026

Join Lexeo Therapeutics for an informational webinar about the latest developments in its Friedreich ataxia (FA) gene therapy program.

Dr. Gregory Aubert of Lexeo Therapeutics and Dr. Theresa Zesiewicz of the University of South Florida will share updates on the SUNRISE-FA 2 clinical trial, which is evaluating an investigational gene therapy called LX2006. The trial is studying whether this therapy may improve heart function and slow the progression of heart disease associated with Friedreich Ataxia.

This webinar is designed for individuals living with Friedreich Ataxia and their families who want to learn more about emerging research and potential treatment options.

Register Now: https://us02web.zoom.us/webinar/register/WN_yqlnIQg0RRK8ub-1R76gJA

Hunstsville showed up in a big way! 👟💙Thank you to everyone who joined us for theHuntsville Walk N' Roll and helped make...
09/10/2026

Hunstsville showed up in a big way! 👟💙

Thank you to everyone who joined us for theHuntsville Walk N' Roll and helped make the day such a success. Together, our community raised nearly $8,000 to support our mission of accelerating the development of treatments and improving the lives of people affected by Ataxia.

We’re so grateful for every participant, donor, volunteer, sponsor, and supporter who made this event possible.

learn more about how you can support the Huntsville Walk N' Roll: https://secure.qgiv.com/event/2026huntsvillewalk/

08/10/2026

In episode 4 of NAF This Week, Andrew reflects on the loss of Dr. Susan Perlman, a beloved leader and pioneer in the Ataxia field whose contributions have made a lasting impact on our community. He also shares highlights from his recent travels to Washington, D.C., and Boston, where he is participating in conferences focused on rare disease research, collaboration, and efforts to advance treatments.

Links & Resources Mentioned:
🔗 Ask the Expert with Dr. Sue Perlman: www.ataxia.org/asktheexpert
🔗 Milken Institute FasterCures: https://milkeninstitute.org/health/fastercures
🔗 Act for ALS: https://milkeninstitute.org/health/fastercures
🔗 Synapticure: https://www.synapticure.com/with/ataxia
🔗 N-Lorem Foundation: https://www.nlorem.org/

Stay Connected with NAF:
Visit www.ataxia.org to learn more about Ataxia, find resources and support, get involved, and follow the latest progress in Ataxia research.

Subscribe to our channel and join us each week for NAF This Week:
https://nafbx.podbean.com/

Address

PO Box 27986

55427

Opening Hours

Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

Telephone

+17635530020

Website

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