Take Action for Tourette Awareness

Advocate for the Tourette Syndrome and Tic Disorder Community

Join the Tourette Association of America (TAA) in advocating for the most pressing policy issues facing the TS and Tic Disorder community. Learn more about our public policy priorities and get involved locally. By completing this form, you will send a letter to your Senators and Representative on behalf of the 1.4 million Americans who live with TS and other Persistent Tic Disorders. These letters are key to gaining support and ensuring federal funding for Tourette Syndrome research and public health education. For a personal touch, please consider adding a story to your letter.

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Dear [elected official],

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As your constituent impacted by Tourette Syndrome (TS) and other Tic Disorders, I am reaching out to ask for your hand in guiding our unified mission to raise Awareness, Research, and Support. Tourette Syndrome, or Tourette, is part of a spectrum of hereditary, childhood-onset, neurodevelopmental conditions referred to as Tic Disorders.  Approximately 1 in 50 school-aged children has Tourette Syndrome or another persistent Tic Disorder. This lifelong condition affects both children and adults of all races, ethnicities, and genders. Approximately 1.4 million people are living with Tourette Syndrome or another persistent Tic Disorder across this nation, and it affects all races, ethnic groups, and races. These conditions are characterized by sudden, uncontrollable movements and/or sounds called tics (e.g. head bobbing, arm jerking, shoulder shrugging, and grunting). Symptoms in Tic Disorders can range from mild to severe and in some cases, can be self-injurious, debilitating and markedly reduce the quality of life.

The CDC estimates that 50% of children go undiagnosed. Therefore, the continued need for the Tourette Health and Education Program, which educates medical providers, educators and the public at large, remains critically important. We need your help to ensure those who are undiagnosed receive appropriate medical care and those who have been diagnosed receive the best evidence-based treatment.

I am requesting your action and support for specific legislative initiatives that will positively impact individuals and families living with Tourette Syndrome and challenging co-occurring conditions including ADHD, OCD, Anxiety, and Depression.

-Support $2.5 million in Fiscal Year 2026 for the Public Health Education and Research Program on Tourette Syndrome at the Centers for Disease Control and Prevention (CDC).

-Provide a long-term extension of telehealth coverage.

-Oppose any cuts to Medicaid, which is the primary health insurance program for people with disabilities in the United States. It covers a variety of services, including preventive care, primary and specialty care, prescription drugs, medical equipment, and long-term services and supports.

-Join the Bicameral and Bipartisan Congressional Tourette Caucus. Both Senators and Representatives.  Please contact Representative Steve Cohen's (Craig Dulniak) or Representative Andrew Garbarino’s (Dominick Porcella) offices for more information.

-Support sustained federal funding for the National Center on Birth Defects and Developmental Disabilities, as well as for medical research at the National Institutes for Health’s (NIH) National Institute for Neurological Disorders and Stroke (NINDS) and the National Institute for Mental Health (NIMH).

-Co-sponsor the Safe Step Act, upon reintroduction, to improve step therapy protocol appeals and ensure patients are able to safely and efficiently access the best treatments for them.

With this letter, I encourage you and your staff to work directly with the Tourette Association of America (TAA) on the inclusion of Tourette Syndrome in proposed and pending legislative initiatives to support the growing number of families living with Tourette and Tic Disorders. Please contact TAA advocacy@tourette.org to answer questions or provide more information.

Thank you for your consideration. I look forward to hearing from you.

Sincerely, [Your information here]