Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now. LEARN MORE!
I’m actually reluctant to tell my story as it’s far from positive. Currently my tremors are more disabling than my balance issues, which are dreadful. I suppose I noticed things weren’t quite right about 10 years ago. I was diagnosed with Cerebellar Ataxia about 2 years ago, and to be honest Read More…
I was born in a family with SCA2 back in India. My father had the symptoms of Ataxia as well as all his five siblings. At that time, it was not genetically tested, but all of his siblings were symptomatic. All of them were wheelchair-bound at the end. However my Read More…
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 Read More…
When Charlie Ruehl was in high school, his mom Susan recalls he would always miss the same step at the bottom of their staircase. She chalked it up to him being off-balance and in a hurry—after all, he was an athletic, teenage boy and he was always running off to Read More…
My unwanted guest arrived when I was conceived. He rode in on my DNA and set up residence in the part of my brain called the cerebellum. This is located in the lower back of the brain and controls the major muscles and coordination. He lived very quietly, in fact Read More…
My name is Tom Lawson and I am 46 years old, married with three children and a dog. I was diagnosed with Cerebellar Ataxia six years ago. Being diagnosed with a chronic auto immune disease was unsettling, no doubt. It’s sobering. It’s terrifying. It is a reminder of my fragility Read More…
My Ataxia Story My name is Robert (Bob) Budack and this all began with me when I was about 15 years old (in about 1967). I started having double vision occasionally. Since it was very sporadic at that time, I tried to ignore it as best I could. (Little did Read More…
This a poem I wrote for Brian Oliveira my husband who passed away from complications associated with Spinocerabellar Ataxia Type 3 (SCA3). Dedicated to Brian OliveiraWritten by Sari Oliveira Imagine for a second what it would be like:Just to live? Imagine having your entire life where living was exhausting?But you Read More…
Episodic Ataxia: The Invisible Impairment Often misdiagnosed, misunderstood, and unseen. A sufferer writes of a silver lining in his tale of swoon and gloom. by Timothy Wahl My childhood was the picture of any normal kid. I hopped, skipped, and jumped just like the rest. Then, at age 11, my Read More…
I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical research of Cerebellar Ataxia. I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk Read More…
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