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).
SIGN THE PETITION
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…
The health and safety of our community is our number one priority at NAF. We wanted to let you know that we are pivoting to a completely virtual 2022 Annual Ataxia Conference. We will no longer offer an in-person option. While we’re very disappointed that we do not get to Read More…
Author: Lori Shogren, Community Program and Services Director A Note About the 2021 Annual Ataxia Conference We know how valuable it is for those living with Ataxia and their caregivers to come together in person at our annual conference to gain strength from shared experiences. The current COVID-19 pandemic necessitates Read More…
Author: Andrew Rosen, Executive Director Hello Ataxia Community: As I sit at my desk on this Friday afternoon, I am amazed that it was less than one week ago that NAF, on the strong and wise counsel of our Medical and Research Advisory Board (MRAB), made the difficult decision to Read More…
We regrettably announce that the 2020 Annual Ataxia Conference has been cancelled due to evolving concerns over the fast moving situation with coronavirus COVID-19. We want everyone to know that this decision was not made lightly. The health and safety of our Ataxia community is our main priority. We did Read More…
Author: Linda Snider Sidwell, MD, NAF Board Member and Support Group Leader The 2020 Annual Ataxia Conference in Denver, Colorado is going to be a world class conference with scientists, pharmaceutical companies, and of most importantly, Ataxians. I’m hoping to see you there. Why do you want to come to Denver you Read More…
Author: Lauren Sormani, NAF Support Group Leader I was diagnosed with Spinocerebellar Ataxia Type 8 in 2017 when I was 21 years old. A few months after my diagnosis I found a support group near me and I attended. I was thrilled to meet other people with Ataxia, but what Read More…
Author: Dana Mauro, NAF Support Group Leader Hi, let’s talk about Ataxia. When my husband, John, was diagnosed with Ataxia, we were desperate for information. We scoured the internet looking for anything on Ataxia, but all too often what we found was inaccurate and just caused us more worry. We wanted Read More…
Author: Andrew Rosen, Executive Director A Note from Andrew Hi Everyone: August in Minnesota. It is hot and humid, and thoughts have turned to my three teenagers getting ready to go back to school. I love the pace of summer – everything slows down a bit, the days are long, Read More…
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