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The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE

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, I have 2 little ones but I know God will see me through.

When Were You Diagnosed? Which Type (If Known)?

Autosomal Recessive Spastic Ataxia

How Has Ataxia Impacted Your Life?

I’m slowly moving and fell a lot before the cane.

What is One Thing You’d Like the People to Know About Ataxia?

We try our best.

Share Your Advice – How Can Others Support Someone with Ataxia?

Let them cry and tell them they are doing great. Encourage them to keep going.

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community. 

Recent Member Stories

Tyler

My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother Read More…

Tracy B

My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” Read More…

Shaun Wesley Best

My Ataxia journey began in 1978, following a three-month coma I experienced the year before, at age 12. Since then, I’ve faced significant balance challenges Read More…

J.C. Myers

Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we Read More…

Susan Harding

I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother Read More…

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