Last month we asked for your feedback about the FDA’s decision to refuse to file Biohaven’s NDA for troriluzole. More than 3,000 people stepped up to make their voices heard! 97% of respondents agree that the FDA should apply regulatory flexibility and accept the NDA filing for troriluzole for a Read More…
Thank you for submitting your comments for the FDA! NAF gathered feedback from the Ataxia community to submit to the FDA. We’re concerned with the FDA’s decision to refuse to file Biohaven’s new drug application (NDA) for troriluzole without a full review of the clinical trial results. Read our full statement Read More…
Author: Mark Hazlin, NAF Board Member In 2021, as I logged into the virtual platform for the National Ataxia Foundation (NAF) Hill Day for the first time, I was nervous. As a PR person in Washington, DC, I’ve been to these advocacy events before. I have a good idea of Read More…
Please join us for the Annual United Against Ataxia Hill Day on September 20, 2023. This will be a virtual event. Ataxia advocates will speak to their Congressional Members. All meetings will be virtual and run approximately 15-30 minutes in duration. You will be assigned 2-5 meetings between 9am and Read More…
I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical research of Cerebellar Ataxia. I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk Read More…
Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is no cure, no approved treatments to slow the disease course, and that it is relentlessly progressive can feel overwhelming and Read More…
Author: Sherry McLaughlin, NAF Support Group Leader What do you do when you or a loved one has been diagnosed with a Rare Disease? You search for a physician who is knowledgeable, and you seek out others with the same condition. This is exactly why the Pacific Northwest Rare Disease Read More…
Please join us for the fourth United Against Ataxia Hill Day on September 21, 2022. Ataxia advocates will speak to their Congressional Members. All meetings will be virtual and run approximately 15-30 minutes in duration. You will be assigned 2-5 meetings between 9am and 5pm. Your Congressional Members need to Read More…
NAF, FARA, and more than 100 volunteer advocates will come together to raise awareness about Ataxia and supporting legislation that directly impacts our community. The third United Against Ataxia Hill Day will be held on Wednesday, September 29, 2021. Ataxia advocates will speak to their Congressional Members to make the Read More…
NAF joined efforts spearheaded by the American Brain Coalition (ABC) to create a Neuroscience Center of Excellence at the FDA. We signed on to ABC’s letters to Congress. One letter asks Congresswoman DeGette and Congressman Upton to include the Neuroscience Center of Excellence in their Cures 2.0 legislation. The other letter urges Congressional Neuroscience Caucus co-chairs Read More…
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