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NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA)
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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

Debbie Pinkston

Ataxia is a family problem. It affects the individual diagnosed of course, but encompasses the rest of the family as caregivers, and those who must wonder and wait if it Read More…

Lisa Jockims

My name is Lisa Jockims. I am 56 years old and I live in Saskatoon, Saskatchewan Canada. I have been recently diagnosed with Ataxia Telangiectasia. Throughout my adulthood I have Read More…

Christina Rakshys

Hereditary Ataxia and Genetic Testing: A Family Affair Original Member Story Published in Generations – Spring 2009 When I was given the diagnosis of “Spinocerebellar Ataxia, type unknown” in 2005 Read More…

Mika

I am Spanish, I am 30 years old and I am a carrier of SCA3 ataxia. My grandmother and my aunt died due to the disease and my mother uses Read More…

Karen W

As a child, in the 1969’s-1970’s, I can remember my paternal grandfather walking with a wide, somewhat unbalanced gait. He was born in 1896 in rural Michigan, and never diagnosed Read More…

Robin C. Lee

Milian’s Journey with Ataxia – Searching for Answers, Hope, and Guidance My wife, Milian, has always been the picture of health—an active yoga practitioner and a strong advocate of mindful Read More…

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