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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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David Brown

I was a high school baseball coach for 25 seasons and had a successful 20 years in as the Public Address announcer for all the programs football and basketball games – both boys and girls. About five years ago, I sold my lucrative Financial Planning practice of 33 years and was looking forward to a fun filled retirement when I began to notice something was wrong. My balance was askew and I had a few cognitive issues plus my speech was impacted as well. After several exams, I was told I had MSA-C and my brain was actually shrinking. I left coaching and gave up announcing (easier said than done – I miss it all very much) cold turkey for life of reading and watching television. I’m bored. My friends say not but walk tentatively and I can hear it my speech. At times, I feel helpless.

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

Two months ago- MSA-C.

How Has Ataxia Impacted Your Life?

I can barely walk anymore and my wife does all the chores.

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

My wife is as trapped as I am.

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

Exercise-go for walks daily and three times a week I meet up with a support group at an MMA boxing site.

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

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 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. 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 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 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 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 Read More…

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