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Double your impact during the Annual Ataxia Research Drive! Donate before December 31st to have your gift matched!  LEARN MORE!

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

A Poem for Brian

This a poem I wrote for Brian Oliveira my husband who passed away from complications associated with Spinocerabellar Ataxia Type 3 (SCA3).  Dedicated to Brian OliveiraWritten by Sari Oliveira Imagine Read More…

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Timothy Wahl

Episodic Ataxia: The Invisible Impairment Often misdiagnosed, misunderstood, and unseen. A sufferer writes of a silver lining in his tale of swoon and gloom. by Timothy Wahl My childhood was Read More…

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Greg Gary

I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical Read More…

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Bridget George

Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is Read More…

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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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Donations needed this hour to reach our goal!

You’ve been such a great friend by staying connected with NAF. If it’s not too much to ask, would you consider giving today so that our anonymous donors can match your gift?