Member Stories

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…

This past January I woke up with balance issues. Within a week I was using a cane. In June, my neurologist diagnosed me as having sensory ataxia. My condition seems to have progressed rather rapidly! During the past seven months, I have struggled when standing and walking. When I sit Read More…

In medical school, one of my professors told me I had a gait disorder. I told him, “No I don’t!” Well, he was right of course. 20 years or so later I found myself unable to run, and gradually noticed weakness in my quads and legs, and eventually a very Read More…

Hi I am a 62-year-old Indian male living in New Delhi, India. My discovery of Ataxia was quite by accident. I suffer from Essential Tremors and the doctor suggested a gene test about 15 years back. The SCA 12 gene was dominant, but since it was more an ET diagnosis, Read More…

I have Multiple Sclerosis and Ataxia affects my walking. I never thought of Ataxia as a separate thing, but a friend has it as well. The neurologist at the hospital notice it as well as my MS Specialist. When Were You Diagnosed? Which Type (If Known)? 2021. Not sure what Read More…

A Life of Resilience: Kamal Ansari’s Journey with Ataxia Kamal Ansari gazed out of the window, the sun casting long shadows over his garden. At 72, he had seen more than most could imagine, and his journey had been one of perseverance and resilience. Born in Pakistan, Kamal had served Read More…

Hello..My name is Jean Marc Roy. I am married with two adult children and a grandson. I also have five siblings. I’m 62 years old. In 2013 I had a mining accident and ended up having three operations on my back which resulted with severe drop foot. I have severe Read More…