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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

Sandy Wilson

I was diagnosed with SCA1 in 2010, five years ago I had to stop work due to it becoming too hazardous, I lost my ability to do everyday tasks like Read More…

Rochelle

Hi, I’m Rochelle I am 60 years old mother of three adult children and grandmother to 3. All of my life even as a teenager I loved working with children. Read More…

William Tartaglia

My story started about four years ago. It has been a long road. Finally on the 13th of August 25 I was diagnosed with Ataxia caused by a degenerative of Read More…

Sarah FitzGerald

In June 2024, I had a massive hemorrhagic stroke caused by an AVM. I was 23 at the time and working out at the gym. The next 6 months I Read More…

Luís Frija

I’m 50 years old from Portugal and work in the contact center industry from home. My journey with Cerebellar Ataxia really began in 2018 when I received my diagnosis. For a long time, my main Read More…

Amir

My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. You may wonder why, after Read More…

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