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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…

National Ataxia Foundation Announces Launch of NAF Drug Development Collaborative

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…

About Brain Donation – Have You Ever Wondered?

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…

2020 Walk N Roll Goes Virtual

Author: Joel Sutherland, Development Director Mark your calendar for Saturday, October 3rd beginning at 1:00pm EDT for the 2020 National Ataxia Foundation Virtual Walk N’ Roll. Register to join us AND win prizes. This Virtual Walk n’ Roll will feature appearances from many people across our Ataxia community. You will hear from 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…

2021 AAC Is Going Virtual

Author: Lori Shogren, Community Program and Services Director A Note About the 2021 Annual Ataxia Conference We know how valuable it is for those living with Ataxia and their caregivers to come together in person at our annual conference to gain strength from shared experiences. The current COVID-19 pandemic necessitates Read More…

How Does a Clinical Trial Work?

Guest Author: Amber Trzeciak, Cadent Therapeutics Clinical trial phases can be a confusing concept to understand. The purpose of clinical trials is to determine how a drug or device (intervention) will interact with a human being. Trials are regulated by our governmental agency the FDA (US Food and Drug Administration). Read More…

EL-PFDD Meeting

View the recording of the Externally-Led Patient Focused Drug Development Meeting for Polyglutamine Ataxias live-stream from September 25, 2020. https://youtu.be/QyqgaNEnug8 What is an Externally-Led Patient-Focused Drug Development Meeting? An Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting gives the FDA and other key stakeholders, including medical product developers, health care providers, and federal Read More…

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