Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
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 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…
NAF Awarded a Record Number of Projects in 2024 18 Studies Funded Totaling $845k Funded! We had our most competitive year ever for Ataxia research grant applications! As a result of the generosity of our donors, NAF was able to fund a record number of Ataxia research grants in 2024! 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 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 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 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…
Hi, my name is Daniel Queirolo, I’m Brazilian, 39 years old, married to an incredible woman and with an equally incredible 3-year-old daughter. About 2 years ago, I suffered from burnout caused by a huge workload, combined with a toxic boss and a terrible work environment. I felt really bad. 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 Read More…
