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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

Korkut Alp

Note: Korkut submitted his story in Turkish. Google Translate was used to translate his submission. The translation may not be accurate. We will include his submission in Turkish, followed by Read More…

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David Beavan

When I was a teenager I remember my father used to weave a little when he walked. We played a lot of golf, and he often toppled over when he Read More…

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Jerry’s Story

I’m actually reluctant to tell my story as it’s far from positive. Currently my tremors are more disabling than my balance issues, which are dreadful. I suppose I noticed things Read More…

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Parna Mukherjee

I was born in a family with SCA2 back in India. My father had the symptoms of Ataxia as well as all his five siblings. At that time, it was Read More…

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Jency W

I got diagnosed at 40 after always walking awkward and 2 years of being unsteady. Now I’m going to start physical therapy and apply for SSDI. It’s sad for me, Read More…

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The Ruehl Family

When Charlie Ruehl was in high school, his mom Susan recalls he would always miss the same step at the bottom of their staircase. She chalked it up to him Read More…

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