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…
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…
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: 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…
Author: Lori Shogren, Community Program and Services Director NAF partnered with FARA and the EveryLife Foundation for Rare Diseases to bring International Ataxia Awareness Day to Capitol Hill. United Against Ataxia Hill Day happened on September 25, 2019. We are so grateful for all the support in planning the day and will cherish the relationships that were built Read More…
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