Bay Village Local Youth Meets with Congress to Advocate for the Tourette Syndrome Community

Eleven-year-old Noah Cronin from Bay Village was one of 116 young people selected nationwide to attend the Tourette Association of America’s (TAA) Ambassador training in Washington, D.C., where they met with Rep. Greg Landsman as well as staff members for Sen. Bernie Moreno, Sen. Jon Husted, Rep. Max Miller & Rep. David Taylor to advocate for greater support for people living with Tourette Syndrome and other Tic Disorders.

It is estimated that 1 in 50 school-aged children in the U.S. are affected by Tourette Syndrome or another Persistent Tic Disorder, conditions that cause involuntary movements and sounds known as tics. Tourette Syndrome is a neurological disorder that impacts individuals of all races, ethnicities, and genders. Due to the complexity of the condition, approximately 50% of those with Tourette Syndrome remain undiagnosed. Because the condition is highly stigmatized and often misunderstood, individuals with Tourette Syndrome often face bullying, misdiagnoses, and a systemic lack of support, all of which can have a deep impact on quality of life and sense of belonging.

The TAA Ambassador Program brings together, trains, and supports youth, teens, and young adults to advocate for people living with Tourette Syndrome and other Tic Disorders in their community. The goal is for Ambassadors to educate their peers, school administrators, local leaders, and elected officials about Tourette Syndrome. TAA Ambassadors spread tolerance and understanding while dispelling myths and stereotypes that are often associated with this misunderstood and misdiagnosed condition. Learn more about the TAA’s Ambassador programs.

“I’m really excited to be chosen as a Junior Youth Ambassador and have had the chance to meet other kids like me! I want to help teach people more about Tourette Syndrome so they can understand what it’s like and how hard it can be,” said Noah. “I hope that sharing my story with members of Congress can help to get the support and resources people with TS need.”

“The TAA Ambassador Program is designed to strengthen the resilience of young people living with Tourette Syndrome and other Tic Disorders, while providing them with the tools needed to take action and advocate for change at the personal, local, and national level,” said Jasmine Tarkoff, Board Chair, TAA. “By sharing their stories and experiences, these ambassadors not only educate others about Tourette Syndrome, but also inspire hope, and foster a sense of community.”

In Washington, D.C., Noah took part in public speaking workshops, built leadership and advocacy skills, and connected with other young advocates. The training culminated in the TAA’s annual ‘Trip to the Hill’ on Tourette National Advocacy Day, where Noah met with congressional representatives to share his personal story and raise awareness about the challenges of living with Tourette Syndrome.

During this year’s advocacy day, a record-breaking 350+ Tourette Syndrome advocates from across the world gathered on Capitol Hill, meeting with over 200 legislators to champion policies that impact the daily lives of the Tourette Syndrome and Tic Disorder community. The specific supports that Noah and the other Ambassadors were advocating for included:

• Support $2.5 million in continued funding in Fiscal Year 2027 (FY27) LHHS-Appropriations for the Public Health Education and Research Program on Tourette Syndrome at the Centers for Disease Control and Prevention (CDC).
• Support sustained FY27 funding for medical research at the National Center on Birth Defects and Developmental Disabilities, National Institute of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS), and National Institute of Mental Health (NIMH).
• Co-sponsor and support passage of the Safe Step Act (H.R. 5509/S. 2903) to improve step therapy protocols and ensure patients are able to safely and efficiently access the best treatment for them.

To help advocate for those struggling with Tourette Syndrome from home, you can send a Take Action Letter at tourette.org/take-action. It’s quick, easy, and helps secure critical federal funding for TS research and public health education.