Member Stories

My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 at the time), physical conditions deteriorated and stopped work. My mother even thought he was lazy and wanted to just stay home. Better understanding his Read More…

Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I found out that mine was shrinking. My sister and I both have a rare form of genetic Ataxia called SCAR8, ARCA1, SYNE1 or Ataxia of Read More…

I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. She had a vision through her school and had failed it. What was so unusual about that was she had her annual exam with her Read More…

My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had balance issues that I attributed to a ‘wonky’ knee. I spent about 50 years working in the education field as a teacher, assistant principal, math Read More…

My name is Julie Guillot, and my son, John, has Ataxia.  John’s journey began on January 19, 1998, just a few weeks after he was born.  As a newborn, he was admitted to the hospital with RSV and had routine blood work performed.  The blood work showed that his platelet counts were low, Read More…

My name is Terrence A Reed Jr, retired U.S. Army. I also served in four combat zones (1 Afghanistan, 3 Iraq). Now that I think back, I think I first noticed while still serving on active duty on Schofield barracks in Hawaii. We did a lot of physical training, and Read More…

I have a genetic disorder called Batten Disease-CLN2. Doctors don’t know why I didn’t start showing symptoms until I was in my forties- this usually only happens to very young children. There is no cure but there is a treatment for the type of Batten Disease I have. I had Read More…

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 Read More…

I was correctly diagnosed with genetic Spinal Cerebellar Ataxia in my early 30’s. Although I have been feeling the effects since my late teens (Not sure which SCA number). As time passes, it’s becoming increasingly difficult to perform routine tasks. My legs and hands have become increasingly weaker. I have Read More…