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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Above: February 2021 Board of Directors Zoom Meeting NAF recently had a few changes to our Board of Directors. Joe DeCrescenzo, Mike Leader, and Bill Sweeney will be retiring after many years of dedicated service. We thank them for their time, commitment, and passion for the Ataxia community! We are Read More…
Last updated: February 2021 The coronavirus (COVID-19) pandemic is affecting communities worldwide. The health and safety of the Ataxia community is a priority at NAF. We have consulted with our Medical and Research Advisory Board, infectious disease specialists, the World Health Organization, and the Centers for Disease Control and Prevention (CDC) 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…
Below are lay summaries submitted for research completed in fiscal year 2019. Each study received a grant from NAF to support their research. To check out more information, click the “+” symbol next to the title of the study. Click the “-” symbol to collapse the lay summary for that 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…
The National Ataxia Foundation (NAF), the Friedreich’s Ataxia Research Alliance (FARA), and Ataxia UK are pleased to announce the date for the inaugural International Congress for Ataxia Research (ICAR) to be held at the Caribe Royale resort in Orlando, Florida, USA on March 15th – 18th, 2022. The Congress will 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…
Pre-competitive pharma industry consortium looks to accelerate development of treatments for Ataxia The National Ataxia Foundation (NAF) announced today the launch of the NAF Drug Development Collaborative. This pre-competitive pharmaceutical industry consortium has a principal goal of accelerating the development of treatments for Ataxia. The group will address the many 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…
