Advocacy

Ataxia Patient Advocacy Organizations Applaud the US Senate for Passing the Bipartisan “National Ataxia Awareness Day of 2020” Resolution

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…

Movement Disorder Advocacy: Making Policy a Priority

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…

2020 Ataxia Hill Day

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…

NAF Statement on Racism and Social Injustice

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…

NAF Attends First Ever Virtual Hill Day

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…

NAF Seeks Support of a Resolution for National Ataxia Awareness Day

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…

United Against Ataxia

Author: Lori Shogren, Community Program and Services Director  An IAAD Like No Other September 25th is International Ataxia awareness Day (IAAD). Over the last 20 years IAAD has grown from a day to create awareness about Ataxia into a movement to fight Ataxia through awareness, advocacy, and fundraising. Today, thousands participate in IAAD through social Read More…

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