April 24, 2025 – Tourette Syndrome (TS) is a genetic condition. TS and other Persistent Tic Disorders affect as many as 1 in 50 people. Tics have been noted by doctors for centuries, and TS was identified in the late 1800s. Today, technological and scientific advancements have led to evidenced-based diagnostic criteria, tools, and treatments.
It is a testament to the collective work of individuals, families, clinicians, scientists, educators, and public health experts that TS is now widely recognized, diagnosed, and treated.
Secretary Kennedy’s comments underscore the continued importance of the Tourette Association of America’s 50+ year effort to raise awareness and advance the scientific understanding of TS and other Tic Disorders.
However, our work is not done.
The CDC estimates that only 50% of people living with Tourette Syndrome have received a diagnosis. People living with TS regularly face stigma and skepticism about the veracity of their condition, associated symptoms, and its causes. TS and other Tic Disorders are extremely complex, and more research and support are critically needed.
We deeply value our long-standing partnership with HHS and look forward to working with Secretary Kennedy and his team to improve outcomes and expand understanding in service of the people we represent. We encourage him and his team to meet with people who live with tics to learn from their experiences, and we ask our community to take action by contacting their congressional delegations to share their stories and request stronger protections and support.
