Bayside, NY – March 5, 2025: On Wednesday, March 5, 2025, the Tourette Association of America (TAA), alongside more than 330 individuals and families from across the country, came together on Capitol Hill to champion policy changes that impact the lives of those affected by Tourette Syndrome (TS) and other Tic Disorders. Advocates, including individuals living with TS, families, medical professionals, and TAA youth ambassadors met with lawmakers to raise awareness of the condition, share personal experiences, and push for increased research funding, improved access to healthcare, and stronger protection for the TS and Tic Disorder community.

Among the attendees were Dash Mihok—actor, producer, and director—and Jeffrey Kramer—CBS Television Network producer and president of Juniper Productions—both of whom live with Tourette Syndrome.

Why We Advocate

• The Centers for Disease Control and Prevention (CDC) estimates that nearly 1.4 million Americans and 1 in 50 school-aged children live with Tourette Syndrome (TS) or another Persistent Tic Disorder.
• 48% of adults and 23% of children impacted by TS or another Tic Disorder have considered suicide at some point in their life. 27% of adults and 10% of children have attempted suicide in 2021-2022.
• 73% of adults and 50% of children impacted have felt discriminated against.
• Uncontrollable swearing, known as coprolalia, is often highlighted by the media, but is not experienced by the majority of those living with TS.

We advocate to reduce these statistics and to provide help and hope to our TS and Tic Disorder community.

Our 2025 Congressional Asks

• Support $2.5 million in continued funding in Fiscal Year 2026 (FY26) LHHS-Appropriations for the Public Health Education and Research Program on Tourette Syndrome at the Centers for Disease Control and Prevention (CDC).
• Support sustained FY26 funding for medical research at the National Center on Birth Defects and Developmental Disabilities, National Institute of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS), and National Institute of Mental Health (NIMH).
• Support a long-term, bipartisan extension of telehealth coverage.
• Continued support of disability-related programs under IDEA and Section 504.
• Co-sponsor the Safe Step Act (not yet introduced) to improve step therapy protocols and ensure patients are able to safely and efficiently access the best treatment for them.

About Tourette Syndrome
TS is a neurodevelopmental disorder that affects children, adolescents, and adults. The condition is characterized by sudden, involuntary movements and/or sounds called tics. Tics can range from mild to moderate and severe and are disabling in some cases. TS is one type of Tic Disorder – tics are the primary symptom of a group of conditions known collectively as Tic Disorders. The cause(s) of TS and other Tic Disorders remains unknown and there is no cure. According to the CDC, approximately 1 in 50 school-aged children has TS or another Tic Disorder and 50% of those children have yet to receive a formal diagnosis.

About the TAA
Founded in 1972, the TAA is the only national organization serving the TS and Tic Disorders community. The TAA works tirelessly to raise awareness, advance research, and provide ongoing support to individuals and families impacted by TS and Tic Disorders. The TAA directs a network of 31 chapters, 83 support groups, and recognizes 29 Centers of Excellence across the country. The TAA is a nonprofit 501(c)(3) organization. Learn more about Tourette Syndrome, Tic Disorders, and the TAA at tourette.org.

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