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
Guest Author: Dr. Pravin Khemani Swedish Neuroscience Institute; NAF Medical and Research Advisory Board Member Hi folks! Social distancing is not social disengagement, so please stay as connected with your near and dear ones as possible…safely of course. Recruit your children or your tech-savvy friends and family to show you Read More…
We’re excited to announce that NAF will award $940,000 in Ataxia research grants this year! NAF’s Board of Directors approved funding for 25 Ataxia research grants in 2020. Nearly 60 applications were reviewed by a team of the world’s top Ataxia researchers. They selected the highest quality Ataxia research grant applications for Read More…
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…
Last year, Mike De Rosa Sr. and Ed Brand started the Joint Mission Bataan to Cure Ataxia (JMB). They marched more than 26 miles through the desert to support NAF’s mission and raise awareness about Ataxia. Together, they raised more than $35,000. This year, we had 31 representatives step up across the country Read More…
Guest Author: Rachel Gaffney, Outreach Specialist at Disability Benefits Help If you have Ataxia, you may experience a variety of challenges. Ataxia can be disabling, and if you are unable to work and earn a living because of the severity of the condition, you may qualify for disability benefits from the Social 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…
It can be hard to connect with other people who have Ataxia. NAF has a number of support groups around the country to help you learn and meet others. There are also lots of great online resources from other members of the Ataxia community. Finding them can be difficult if 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…
