NAF

2021 AAC Is Going Virtual

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…

EL-PFDD Meeting

View the recording of the Externally-Led Patient Focused Drug Development Meeting for Polyglutamine Ataxias live-stream from September 25, 2020. What is an Externally-Led Patient-Focused Drug Development Meeting? An Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting gives the FDA and other key stakeholders, including medical product developers, health care providers, and federal partners Read More…

NAF Statement on Racism and Social Injustice

We have been shaken, saddened, and angered by the death of George Floyd here in NAF’s hometown of Minneapolis. We have also been strengthened by the peaceful anti-racism protests that have swept the country, and the necessary conversation that is occurring. The National Ataxia Foundation condemns all forms of racism and social Read More…

Certainty In Uncertain Times

Author: Joel Sutherland, Development Director Uncertain times? I don’t think so! Granted, we are not sure if summer camps will be open for the kids in the next several weeks. We are not sure when scheduled weddings will take place with more than 10 people in attendance or when family Read More…

Light at the End of the Tunnel

Author: Sue Hagen, Research Services Director I heard a story about a father and his son out on a bike ride who came upon a drainage tunnel that ran underneath the highway. They decided to get off their bikes and go exploring. They entered the tunnel and started walking when Read More…

NAF Attends First Ever Virtual Hill Day

Author: Lori Shogren, NAF Community Program and Services Director The first ever virtual Hill Day on March 18th was a tremendous success! This event was organized by the Alliance for a Stronger FDA which is an advocacy organization that NAF is proud to be a member of. For Alliance members Read More…

8 Things to Do While You Are Social Distancing

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…

2020 NAF Funded Research

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 Office is Working Remote

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…

Reflections On a Challenging Week

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…

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