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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

Freyglee Borges

I am from Venezuela, South America, I am 24 years old and living a “normal life” studying at university. My Ataxia is quite rare. I got sick 5 years ago, Read More…

Cameron Dingerson

My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming premiere of The Thirteenth Olympian, Read More…

Valentina

Todo empezó a los 9 años cuando estaba en el colegio y la profesora y mi mamá se empezaron a dar cuenta que levantaba los brazos lateralmente para caminar y Read More…

Denny

My name is Denny and I am 71 years old living in a small town in Northern Minnesota.  I have had a diagnosis of Ataxia (unknown origin), for twelve years. Read More…

Liliana Haefliger

One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when I drank wine, but also Read More…

Dušan Stojanovich

“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full of imagination. He had a Read More…

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