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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Guest Author: Jay Armstrong, NAF Support Group Leader At my 7 year olds son’s first baseball practice the coach asked if a parent would be willing to help with a pop-up drill. It was mid-day. Hot. And most of the parents were tucked deep in the shade. The coach, a Read More…
Author: Mary Ann Peterson, NAF Research Associate Many feel powerless when they are first diagnosed with Ataxia. Brain donation gives the donor and family the power to provide researchers knowledge to fight back against the disease. The examination of diseased brain tissue by a trained researcher remains the gold standard Read More…
Author: Joel Sutherland, Development Director Mark your calendar for Saturday, October 3rd beginning at 1:00pm EDT for the 2020 National Ataxia Foundation Virtual Walk N’ Roll. Register to join us AND win prizes. This Virtual Walk n’ Roll will feature appearances from many people across our Ataxia community. You will hear from Read More…
NAF and FARA held our second Hill Day on Thursday, September 10, 2020! The event raised awareness about Ataxia and supported legislation that directly impacts our communities. Ataxia Hill Day 2020 Was a Success Thank you to all who helped us Flood the Hill for #AtaxiaHillDay. Twenty Senate meetings were held 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…
The Voice of the Patient Report (PDF) for Polyglutamine Ataxias and DRPLA is now available. This report summarizes information from the Externally-Led Patient Focused Drug Development (EL-PFDD) meeting we hosted on September 25, 2020. We would like to offer our thanks to the patient panelists, phone callers, and individuals who submitted Read More…
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…
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…
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…
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…
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