Telling the TD Story

NOTD advocates on behalf of the estimated 750,000 U.S. citizens who have some form of TD. NOTD visits Washington, DC, during or just prior to Tardive Dyskinesia Awareness Week each year (the first full week of May) to educate elected representatives and Congressional staff on the debilitating, often permanent reality of living with TD. These personal meetings with constituents have a real impact in educating policymakers about TD and the effect TD can have on quality of life. This group approach of bringing together people who have TD and their caregivers to tell their harrowing stories puts a face to TD and are often highly memorable because of their emotional impact.

Building a Movement

All 50 states and the District of Columbia now recognize Tardive Dyskinesia Awareness Week with a variety of awareness efforts including recognition in State House of Representatives, press articles, social media, and even television news reports.  

As a member of the Movement Disorders Policy Coalition, NOTD frequently meets with other organizations to discuss insurance issues and state legislative efforts that can affect people with movement disorders. This includes policies such as step-therapy requirements and the treatments that may or may not be covered by commercial or government insurance plans.  

Join Us. Your story makes the difference.

If you would like to be considered as a volunteer patient advocate, please email us at There are many ways you can help others in your shoes – from appearing in videos to speaking in front of healthcare practitioners. And if you are selected to participate in a trip, all expenses will be covered.

Those who participate in these advocacy efforts not only enjoy the experience of sharing their stories, they often forge new, long-lasting friendships as well. So please join us in building this movement!