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
Annual United Against Ataxia Hill Day was on September 20, 2023. At this virtual event, Ataxia advocates spoke with their Congressional Members to help them fully understand what Ataxia is and what legislative action is needed. 5th Annual United Against Ataxia Virtual Hill Day Was a Huge Success Virtual Event 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…
Friedreich’s Ataxia Research Alliance (FARA) is encouraging Reata Pharmaceuticals to submit a New Drug Application (NDA) for Omaveloxolone, which recently completed a Phase III clinical trial as a treatment for Friedreich’s Ataxia (FA). FARA is also urging the Food and Drug Administration (FDA) to consider approving the NDA. FARA has Read More…
The National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) applaud the United States Senate on behalf of Ataxia patients and their families for passing the National Ataxia Awareness Resolution of 2020 (S.Res. 717). Led by U.S Senator Elizabeth Warren (D-MA) and U.S. Senator Cindy Hyde-Smith (R-MS), this Read More…
Guest Author: Movement Disorder Policy Coalition Movement disorders such as Ataxia, Parkinson’s, Huntington’s, and tardive dyskinesia can affect every aspect of a person’s life. That includes the ability to work, travel, exercise, engage in leisure activities and interact with friends and family. But wise policymaking can help these people continue Read More…
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