Edgemont Student Named National Tourette Syndrome Youth Ambassador

May is an important month for Edgemont's Jack Klion. On the 26th, he turns 14. But May 15 also marked the beginning of National Tourette Syndrome Month, important to Jack because he has the often misdiagnosed and misunderstood disorder.

The eighth-grader, a scrappy hockey player who's a major fan of the New York Rangers, recently traveled to Washington, DC, to participate in the National Tourette Syndrome Youth Ambassador Program, which trains teens to advocate for themselves and for others afflicted with Tourette's, and to provide their peers and younger children with accurate information about TS by going into classrooms, schools and clubs to speak about the disorder.

"It was a lot of fun," said Jack, who teamed up with his mother, Jennifer Rosin, at the Washington program. Forty-six teen-agers representing 29 different states participated in this year's program, which was held in the spring.

"The whole focus was on training us to become ambassadors for Tourette's," said Jack. "Our job is to educate other kids about what Tourette's really is."

Gilles de la Tourette syndrome, its official name, is a condition that causes a person to make repeated, quick movements or sounds they cannot control. The movements or sounds are called tics.

The syndrome, which is four times as likely to occur in boys as in girls, is believed to be linked to problems in certain areas of the brain, and can be severe or mild. In fact, many people with very mild tics may not even be aware of them or seek medical help. A small percentage of people have more severe forms of Tourette syndrome, including vocal tics and outbursts.

Youth Ambassadors, said Jack, also met with their representatives and staff in the U.S. Congress, speaking to them about the syndrome and asking them to continue funding for the Tourette Syndrome Association and for the Centers for Disease Control, which has helped out by conducting research into Tourette's.

"The more funding that's received, the more research that can be done," said Jack. With more research, those afflicted with TS over the years have benefited from improved medications to treat their symptoms.

Jack, who currently has a mild form of Tourette's, was diagnosed when he was in the first grade. "In the fourth grade, things got terrible," he said. "I would repeat every sentence, and I would get tics whenever I tried to say words that started with 't' and 'r'."

A variety of drugs were prescribed to help Jack overcome the symptoms, but some gave him nightmares and others made him tired and foggy.

"Then, I'll never forget it -- I was on a ski trip in Colorado, and suddenly noticed that my tics had subsided," he said.

His Washington trip reminded Jack that Tourette's comes in many different forms. He spoke of one youth ambassador who lives in upstate NewYork and had to travel to Long Island from his home to find a physician qualified to treat the syndrome. He also expressed admiration for youth ambassadors who suffered from more severe forms of TS than his own.

Jack also has been inspired by Edgemont's own Ethan Kempner, a 2011 EHS graduate who also served as a Youth Ambassador and has advocated on behalf of young people afflicted with TS. Ethan currently attends Tufts University.

Jack has already spoken to seventh and 11th grade classes in Edgemont, as well as Fifth graders at Mamaroneck Avenue Elementary School in White Plains. He hopes the students he talks to will better understand and become more tolerant of those afflicted with Tourette's.

To learn more about Tourette syndrome, visit the National Tourette Syndrome Association website.