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: Sokol Todi, PhD; Wayne State University I have been attending the Ataxia Investigators Meeting for nearly a decade. I was a junior faculty at the time of my first participation. I had worked in the Ataxia field for a few years and was looking for a scientific family Read More…
At NAF, we support researchers in many ways, including our grant process. Research grants allow Ataxia investigators to request funding for their studies. Lay summaries are available below for the research grants we funded in 2021. $655,000 Funded Overall 13 Research Studies Funded Research Seed Money Grants Research Seed Money Read More…
NAF, along with Ataxia Global Initiative, and Ataxia UK, recently partnered with Critical Path Institute (C-Path) for the launch of their Critical Path to Therapeutics for the Ataxias (CPTA) Consortium. CPTA is a public-private partnership focused on accelerating the development of treatments for inherited Ataxias. The work of the Consortium will Read More…
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…
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