On April 19, Congressman Leonard Lance (R-NJ7) and the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) conducted a roundtable discussion in which three Garden State teenagers discussed TS and how it has affected either themselves or people they know and with whom they interact.
It was an exciting 90 minutes for the three youth in attendance. Josh Klapper, Thomas Burke and Cory Singer all had an opportunity to paint a picture for Congressman Lance of what it is like to live with Tourette or personally experience its effects in the life of a friend or family member.
Singer, a senior at South Plainfield High School and a budding musician who on May 5 made his television debut on Bravo Media’s “The Kandi Factory,” was adamant that more education is needed in schools – something NJCTS offers on a regular basis.
“Students and teachers usually have no idea what TS is. We need to give more education about Tourette Syndrome and what it is, especially to the teachers,” said Singer, 18, who attended the roundtable with his mother, Jill Pavel. “Teachers say, ‘Whenever you have the tics, leave the classroom.’ That’s wrong. And awareness is key to fixing it. People with TS should never be ashamed of who they are. We are who we are, and our flaws are what make us good. With the help of this organization (NJCTS), we can get the word out there.”
Klapper, a sixth-grader at Terrill Middle School in Scotch Plains, was excited to tell the Congressman about the popular HBO TS documentary “I Have Tourette, But Tourette Doesn’t Have Me.”
“I didn’t know much about TS at first, but after I saw that movie, I saw how many people were like me, and I started to understand it,” said Klapper, who along with his mother Susan, also informed the Congressman about his fifth-grade Tourette service project with which NJCTS assisted. Congressman Lance was impressed with Klapper, noting: “You are very courageous, Josh, and you should be very proud.”
Burke, a junior at Seton Hall Prep in South Orange who hails from Summit, doesn’t have Tourette himself, but his 13-year-old brother has autism and his work at a karate studio for special-needs children frequently brings him into contact with kids who have TS and associated disorders.
“Many of the kids I work with have severe autism, OCD, ADHD and a few have Tourette. I’ve learned a lot from being here today about what Tourette is,” said Burke, 16, who was joined at the roundtable by his mother, Anne. “It’s become something that’s pretty important to me. Tourette Syndrome is just something you see on TV or just hear about. It’s real, and kids you encounter in everyday life have it. And they’re no different than you or me.”
