The following information was provided by the Social Security Administration. How do I apply for disability benefits? How long does it take to get a decision after I apply for disability benefits? Answer: You can apply for disability benefits online at www.ssa.gov/benefits. To get a decision on your disability application Read More…
This is a new 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 Manager Welcome to NAF’s first issue of Ataxia Med News. Intended Read More…
With Mother’s Day approaching, NAF would like to recognize all the amazing moms in the Ataxia community. Whether you are a mother navigating her own diagnosis or caring for loved ones living with theirs, we know that you face this journey with courage, strength, and resiliency. You are an inspiration. Read More…
Taking part in research is one way to help accelerate the development of treatments for ataxia. Some people like playing an active role in improving our understanding of ataxia by participating in clinical trials and other research studies. However, participating in research is a deeply personal choice. There are a Read More…
NAF is seeking a motivated law/pre-law school or public policy graduate/undergraduate student for a May 15 -October 1, 2023, Public Policy & Advocacy Internship. The internship will provide students with the opportunity to learn about federal and state rare disease, research development, health policies, programs, and advocacy strategies while developing Read More…
Each year on the final night of the Annual Ataxia Conference we honor members of the Ataxia community for truly standing out in the field of Ataxia research or awareness. We want to congratulate this year’s awardees and thank them for their dedication and achievements to the Ataxia community! Check Read More…
NAF to Award $735,000 in Ataxia research grants in 2023 There was a robust pool of applicants for NAF research grants in 2023. It demonstrates the energy to accelerate treatment development in this space. We were thrilled to see so many studies with high scientific merit! These grants allow Ataxia Read More…
Mike De Rosa, a 23-year Green Beret Special Forces Veteran, is set to hike Mount Kilimanjaro in October to raise awareness for Ataxia. Mike, a North Carolina native, entered the United States Army in June 1982, immediately after finishing High School. Eyes set on joining the Special Forces group, he served Read More…
The FDA recently the FDA announced approval for SKYCLARYS (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia. NAF is thrilled about this announcement and proud to have been involved in the process, from clinical trial recruitment to educating our community about Read More…
The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…
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