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 it’s all I ever think about. Clearly things could be worse and I am grateful that I was more or less ok until I was 60.  I fret for my wife and family as much as myself. I think it’s because of the tremors that things seem dire, brushing my teeth is the hardest thing I do all day. I feel l ..read more

Are you traveling somewhere? Don’t assume that an activity isn’t accessible! Jessica, who has Ataxia and uses a wheelchair, traveled to the Florida Keys with her parents in June 2023. She went swimming with dolphins, fishing & snorkeling from a boat, and cruising through the Everglades. Read about her experiences and find all the links at the end. Article offered by Day Undefined Find every day accessible items. Swimming with Dolphins and Airboating with Alligators: Accessible Activities in Florida Guest Author: Jessica B. Swimming with Dolphins When we first arrived at ..read more

According to the National Council on Independent Living, Centers for Independent Living (or CILs) are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. Kory Macy, a person with Ataxia who uses a wheelchair, explains what CILs are and why they may be helpful to people with Ataxia. The US has 403 Centers for Independent Living Find your local CIL or SILC. Why Centers for Independent Living May Be a Good Option for People with Ataxia Guest Author: Kory Macy My name is Kory Macy and I was diagnosed with AOA2 whe ..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 father died of congestive heart failure and he walked with assistance till the very last day; he was 74. However the neurologist correctly diagnosed as OPCA (Olivo Ponto Cerebellar Atrophy) from the symptoms only and told us that there’s no cure. I knew this from birth almost and learnt from school how an autosomal dominant inheritan ..read more

Have you ever wanted to volunteer as an Ataxia research participant? Have you been unsure about how to find out about ongoing research studies? Have you wanted to help researchers better understand Ataxia? One answer to all three of these questions is a patient registry.   A patient registry collects specific data about a particular condition, such as various forms of Ataxia. Collected information may include:  Basic demographic information  Health information  Quality of life information  Contact information  The information collected in a patient regi ..read more

We’re thrilled to introduce some fresh faces joining our mission here at NAF! Meet our newest board member and the five staff who have joined our team this year. With diverse backgrounds, talents, and a shared passion for making a difference, these individuals bring unique perspectives and skill sets that promise to not only enrich our team but also propel NAF toward achieving our ambitious goals. Keep reading to learn more about them and get a glimpse into the hearts and minds behind our mission. The Ataxia community welcomes you! Meet Our New Board Member Bryan Tabery Bryan i ..read more

Ataxia is complex; the diverse symptoms it presents makes every individual’s experience uniquely challenging. As a person ages, determining whether changes are caused by Ataxia or unrelated causes can be difficult, especially when symptoms impact the way a person thinks and feels.  It is important to understand Ataxia’s impact beyond the physical or visible symptoms. Historically, the effects of Ataxia on cognitive abilities are understudied and can be overlooked. It is in this context that we celebrate a significant achievement in Ataxia research. “The Cerebellar Cognitive Affective ..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 do something. But a few years later, in 2013, his sister Mary started missing that same bottom step. Susan felt something was off, but, even as a licensed nurse practitioner, she couldn’t explain it. By this time, Charlie was already in college and living on his own. Fortunately, he began a summer internship in New York City and ..read more

Many people with Ataxia are interested in participating in clinical research, but are not sure where to start. It can be tricky to know where to start looking for information. Our Participate in Ataxia Research webpage is a good place to start.  However, we often receive questions about how to use external databases to find ataxia research opportunities – including ClinicalTrials.gov. We have made this guide to help you learn how to use the search tools on ClinicalTrials.gov to find Ataxia-specific information.   ClinicalTrials.gov is an online database of clinical research ..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 I didn’t know that he was there. About 20 years ago, in my early 60’s, he began to show his presence in many strange ways. He was causing me to have vertigo, walk slightly off balance, and causing a slight difference in my speech, like I’d had a couple of drinks. It felt like my tongue was a little thick.  Sixteen years a ..read more