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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Hello my name is Sly. I’m 33 years old. Started to show symptoms at age 21, diagnosed at age 25. Fun fact: before I got diagnosed is that I hiked half Dome in Yosemite. It took me and my family about fifteen hours. When I moved in an apartment with Read More…
I was diagnosed with Gluten Ataxia Disease 2 years ago. I went to every specialist and checked myself into the hospital for tests. I had a brain MRI. Every doctor said I was fine. I was so dizzy 24/7. But no doctor helped me. They said to take anxiety meds. Read More…
Shortly after returning from a once in a lifetime vacation to Turkey in 2010, at age 58, I began to experience odd neurological symptoms and profound exhaustion. I felt like I was bobbing up and down inside as if I were on a boat or as if the pull of Read More…
My name is Neyveth Duarte and my dad was officially diagnosed with Ataxia earlier this year. My dad is my hero and he is going through a really hard time due to his current symptoms. Growing up my dad was a very active man who played baseball for over 3 Read More…
I grew up in a small & rural town of about 3,500 people in central Minnesota. I was raised in a blue-collar middle class home, with both loving parents and two older brothers. I was an average athlete in high school (for a small town) playing football and baseball, and 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…
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…
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…
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