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National Ataxia Foundation

Accelerate!

Seth Johnson

I am 41 years old and currently live in Ashland, VA. I have SCA2. My Mom, Aunt, Grandfather and cousin all have or have had it as well.

I started to feel off earlier this year and knew what to get tested for because of my Mom. I can still trail run, ride a bike and work. But I have to admit they are getting more challenging.

I have found a lot of hope in joining the Ataxia community and look forward to the weekly webinars and meetings. I have also found that staying active and PT helps me both physically and mentally.

The best thing about this new diagnosis for me is the ability to focus on the things that really matter like family and friends.

I will continue to try and help with any studies I can and fundraising.

I still get down about my new situation but I just have to remember to think around the problem and find comfort in all the good that I have in my life.

Read Other Member Stories

Jo Ann Kovar

My name is Jo Ann Kovar.  I’m a 60-year-old resident of Ames, Iowa.  I moved here 22 years ago from South Louisiana.  When I first moved here, I led an Read More…

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Bud Manley

I had a normal childhood growing up other than I was uncoordinated when it came to playing sports. I was bright, did well in school, and went on to receive Read More…

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Brian Oliveira

Hi I’m Brian and this is my story… I was diagnosed in 2010 with Cerebellar Ataxia type 3 (sca3) it’s genetic and another family member has the same disease. My Read More…

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Kathryn Smith-Hanssen

Life as I knew it, irrevocably changed fifteen years ago. It wasn’t an immediate event, but a slow, unraveling of my ability to move about normally. The rare, inherited condition Read More…

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Shawn Andrus

My name is Shawn Andrus, many call me either, husband, father, son, uncle, and one calls me Godfather. I was diagnosed officially with Ataxia in January of 2020 at 48 Read More…

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Pat Clementz-Peterson

The Michael and Patricia Clementz-Peterson Family Fund has supported NAF in many ways throughout the years. Since 2017, they generously pledge to match donations made to NAF’s Summer Match Challenge. Read More…

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Are you ready for fun and learning at the largest Ataxia conference of the year?

2023 Annual Ataxia Conference: Partnering for Progress

Join us to connect, learn, and take action toward accelerating treatment development!