NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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Ataxia doesn’t wait—and neither should treatment. NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA). With an estimated 15,000 people in the U.S. affected by SCA, it’s time for decision-makers to understand the impact Read More…
Submitted by Theresa Nelson, Executive Director at Ataxia Connection It is an exciting opportunity for our organization, Ataxia Connection, to travel and attend the Annual Ataxia Conference (AAC) as a group and network with other individuals and care partners in the Ataxia community across the U.S., along with meeting the Read More…
Submitted by Mark Holdenried Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to sessions, each moment added to the feeling that we truly are not alone in this journey. Meaningful Moments and New Connections Before even boarding the Read More…
A generous family stepped forward to MATCH THE MATCH for April’s Accelerate! Double the Drive campaign. They contributed an additional $50,000 in memory of Carol Tate, whose legacy continues to inspire hope for families affected by Ataxia. We’re grateful for her family’s continued support of NAF’s mission to accelerate treatment Read More…
My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 at the time), physical conditions deteriorated and stopped work. My mother even thought he was lazy and wanted to just stay home. Better understanding his Read More…
Thank you for 15 Years of Chuck and Duck! We guarantee you will get a kick out of this! For the15th year, Charlton Heights Elementary School participants came together to celebrate a former student with Ataxia, raise vital funds for the community, and have a blast doing it (check out those Read More…
Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I found out that mine was shrinking. My sister and I both have a rare form of genetic Ataxia called SCAR8, ARCA1, SYNE1 or Ataxia of Read More…
I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. She had a vision through her school and had failed it. What was so unusual about that was she had her annual exam with her Read More…
Guest Author: Ellie Martin We all have days where we just don’t feel like ourselves and any task can seem overwhelming or impossible to achieve. Mental health holds significance for overall well-being and quality of life. Navigating the challenges of life with Ataxia can be difficult. Therefore, prioritizing mental health Read More…
My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had balance issues that I attributed to a ‘wonky’ knee. I spent about 50 years working in the education field as a teacher, assistant principal, math Read More…
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