NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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Have you ever wondered what goes on behind the scenes to bring a new drug to market? The process can take a long time. This is because of the many steps required. This is particularly true once human clinical trial participants are involved. In this article, we will explore the Read More…
Guest Author: Ellie Martin According to the World Health Organization, rehabilitation is defined as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment.” Rehabilitation can help by making everyday activities more enjoyable. Using rehabilitation services is a way Read More…
When I was a teenager I remember my father used to weave a little when he walked. We played a lot of golf, and he often toppled over when he tried to tee up his ball. “Damn middle ear,” he said, and we all nodded in agreement. Back then nobody Read More…
This is a periodic newsletter for Ataxia clinicians to keep them up-to-date on patient resources and other medical news. To begin receiving this newsletter, join as a professional member of NAF at www.ataxia.org/JoinNAF. Hello from NAF’s Clinical Services Team Hello Ataxia Health Professionals, As we welcome Spring here in Minnesota, Read 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…
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 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 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…
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