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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NAF staff will be working remotely until further notice, doing our small part in slowing the spread of the COVID-19 virus. What this means is business as usual, just remote: In-person meetings for our staff (external and internal) will be rescheduled as phone/video calls. NAF staff will work from their 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: Lori Shogren, Community Program and Services Director It was a pleasure to attend the Twin Cities Ataxia Support Group Meeting on November 16. This was a working meeting to develop the group’s 2020 programming. It was great to see everyone participate in this process by sharing their ideas and Read More…
Giving Tuesday is a global day of giving that is recognized on the Tuesday after Thanksgiving each year, usually through social media efforts. To celebrate, people donate time, talents, and/or resources to causes that are important to them. This year, #GivingTuesday is on December 3, 2019. At NAF, Giving Tuesday Read More…
Author: Lori Shogren, Community Program and Services Director NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day happened on September 25, 2019. We are so grateful for all the support in planning the day and will cherish the relationships that were built Read More…
Photo: Andrew Rosen (right) presents a Certificate of Appreciation at the Orange County Walk N’ Roll to Cure Ataxia Author: Andrew Rosen, Executive Director The life of an Executive Director at a nonprofit like NAF is filled with many different tasks. While I enjoy coming to the office and working 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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