Dix Hills Teen Lobbies on Capitol Hill for Tourette Syndrome

Lee Gochman, a 15 year old from Dix Hills was among several teens chosen to speak on Capitol Hill on behalf of the NY Chapter of the Tourette Syndrome Association (TS). On April 3, 2008 Lee met with Representative Steve Israel as well as other NY Representatives and Senators in Washington, DC. Lee provided our representatives with information about TS.

TS is a neurobiological disorder characterized by involuntary movements and vocalizations. The typical age of onset is between 5 and 7 years and the disorder often brings with it additional co-morbidities, such as Attention Deficit Disorder, Obsessive Compulsive Disorders, sensory processing disorders and learning disabilities. It affects some 200,000 Americans and is often misunderstood. Despite how TS is presented in the media, Copralalia (uncontrolled swearing) only affects a small minority of those with the disorder. Education is the key to understanding.

Lee spoke with Mr. Israel and his staff about his personal experiences and how TS impacts on his education, ability to focus and carry out daily routines. He discussed the legislative issues that affect people with Tourette Syndrome (TS). In particular, Lee and many teens have benefitted from laws and funding which address necessary school accommodations and education for teachers to be properly trained. Lee highlighted the importance of research and continued education of the public in regard to TS. “No one chooses to have TS, it is hereditary."

In addition, Lee has been trained as a TS Youth Ambassador. In this role, Lee educates today’s youths about the facts and misconceptions of the disorder as well as promoting tolerance, by presenting in classrooms and schools. “It is important for my peers to become aware and for the correct information to be available.”

This was Lee’s first “trip to the Hill” and his first time attending the National TS Conference in Virginia, “but it won’t be my last. It was great to meet other teens and adults with TS and know we are not alone.” Tourette Syndrome Awareness month is May 15th-June 15th. “I want to get the word out to people and politicians that kids with TS are just as smart and capable as other kids.”

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