National Ataxia Foundation

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

We’re proud to share that NAF’s first staff-led, peer-reviewed publication has been accepted in "The Cerebellum".Built f...
05/20/2026

We’re proud to share that NAF’s first staff-led, peer-reviewed publication has been accepted in "The Cerebellum".

Built from feedback shared by more than 600 members of the Ataxia community, this research highlights the importance of patient voices in shaping research, care, and treatment development.

Read the lay summary on our website to better understand the findings: https://bit.ly/4uqWsZM

Read the full article in "The Cerebellum": https://bit.ly/4tNT4qD

IntraBio announced today that the U.S. Food and Drug Administration (FDA) has accepted for review its supplemental New D...
05/19/2026

IntraBio announced today that the U.S. Food and Drug Administration (FDA) has accepted for review its supplemental New Drug Application (sNDA) for AQNEURSA® (levacetylleucine) for the treatment of Ataxia-Telangiectasia (A-T) in adults and pediatric patients.

Read More: www.ataxia.org/pharmanews

Could you take on the Grand Canyon? We have 26 spots available for Xtreme Hike 2026! This challenge is for advocates, fa...
05/19/2026

Could you take on the Grand Canyon? We have 26 spots available for Xtreme Hike 2026!

This challenge is for advocates, family members, caregivers, community supporters, and anyone ready to push themselves for families affected by Ataxia. Our crew from last year braved the journey, had an unforgettable experience, and raised more than $300K to support NAF's mission!

Learn more at www.ataxia.org/hike

Tips from physical therapists and other healthcare professionals can sometimes lead to simple adjustments that make ever...
05/19/2026

Tips from physical therapists and other healthcare professionals can sometimes lead to simple adjustments that make everyday movement feel safer and more manageable. Thanks to Patricia for sharing this helpful tip with the community.

Have a tip to share? Submit it at ataxia.org/tips

Living with Ataxia can come with challenges that others may not always understand.Ana shares her journey to an SCA2 diag...
05/18/2026

Living with Ataxia can come with challenges that others may not always understand.

Ana shares her journey to an SCA2 diagnosis and what it’s like learning to navigate symptoms that are often misunderstood.

Stories like Ana’s help raise awareness, build understanding, and remind others in the Ataxia community that they are not alone. Read her story and consider sharing your own experience with the Ataxia community.

Read Ana’s Story: www.ataxia.org/ana/

Meet Juan Mato, the latest researcher featured in our Faces of Ataxia Research series. Juan’s NAF-funded research focuse...
05/16/2026

Meet Juan Mato, the latest researcher featured in our Faces of Ataxia Research series.

Juan’s NAF-funded research focuses on Spinocerebellar Ataxia Type 3 (SCA3) and how peripheral neuropathy symptoms, like numbness and pain, impact people living with Ataxia.

Read more about his work and the discoveries helping move research forward. www.ataxia.org/faces-of-ataxia-research-juan-mato/

New clues into SCA1: RNA gets trapped inside toxic ataxin-1 clumps in brain cells, disrupting the production of proteins...
05/15/2026

New clues into SCA1: RNA gets trapped inside toxic ataxin-1 clumps in brain cells, disrupting the production of proteins and contributing to disease.

Read the full article to learn how these findings may help researchers better understand the mechanisms driving SCA1.

Read More: https://bit.ly/4fjQhBT

Minnesota Walk N’ Roll is heading back to CHS Field! Join us for a day of community, connection, and fun as we come toge...
05/15/2026

Minnesota Walk N’ Roll is heading back to CHS Field! Join us for a day of community, connection, and fun as we come together to support families affected by Ataxia.

Now’s the perfect time to start your team, invite your friends and family, and help make this year’s event bigger than ever.

Learn more and get started: www.ataxia.org/WalkMN

NAF was in Washington, DC this week advocating for the Ataxia community and the future of rare disease treatment develop...
05/15/2026

NAF was in Washington, DC this week advocating for the Ataxia community and the future of rare disease treatment development.

Courtney Bockhop and Andrew Rosen attended a scientific workshop hosted by the EveryLife Foundation that brought together patient advocacy organizations, industry leaders, and the FDA to discuss patient-centered approaches to rare disease therapies. Conversations like these are critical to ensuring the patient voice remains part of the drug development and regulatory process.

Andrew also joined fellow advocacy leaders on Capitol Hill the following day for Community Leader Hill Day, meeting with legislators to advocate for policies that support the rare disease community.

Learn more about NAF advocacy efforts and how you can get involved at www.ataxia.org/advocacy

Join our Research and Treatment for DRPLA webinar, co-hosted with CureDRPLA. An expert will explore how DRPLA is studied...
05/14/2026

Join our Research and Treatment for DRPLA webinar, co-hosted with CureDRPLA. An expert will explore how DRPLA is studied and the current state of research and drug development for the disease. Whether you're newly diagnosed or supporting a loved one, this session is for you.

Register Now: www.ataxia.org/webinars

Address

PO Box 27986
Golden Valley, MN
55427

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+17635530020

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