A Northport teen will be standing on the steps of Capitol Hill, in Washington, D.C., this month to speak with lawmakers about Tourette’s syndrome.
Jack Muise, 14, is a ninth-grader at Northport High School. At the age of 10, Jack was diagnosed with Tourette’s syndrome, a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics, according to the National Institute of Neurological Disorders and Stroke.
Sponsored through the national Tourette Syndrome Association, Jack was selected as a youth ambassador — a title that will give him the opportunity to attend a two-day training in Arlington, Va., with 39 other 13- to 17-year-olds, from March 23 to 25, to learn how to educate peers about the disorder.
Jack, who says he is very excited about the training, learned about the program through his Tourette’s syndrome support group, which generally meets once a month from September through June in Old Brookville in Nassau County.
The youth ambassador program originated from Jack’s own support group — the national group’s Long Island chapter. Jennifer Zwilling, now 24, who also has Tourette’s syndrome, started the training program in 2008.
“The goal of this exciting program is to educate children all over the country about TS, a widely misunderstood disorder,” Zwilling said in a press release. “We are following the motto ‘think globally, act locally.’ Understanding and tolerance are the program’s goals.”
Since 2008, the youth ambassador program has completed more than 1,000 activities, including presentations, interviews and training sessions and, through its combined efforts, has reached over 5.5 million people.
Following the training, all of the youth ambassadors, Jack included, will meet with their respective local representatives on the steps of Capitol Hill on March 25.
Jack will be meeting with U.S. Rep. Steve Israel (D-Huntington), New York’s 3rd Congressional District representative, to advocate for support for the neurological disorder, he said.
“I think people don’t understand, for me personally, it’s when I say inappropriate things that I can’t control and people think I’m weird,” Jack said. “I just want to be able to explain what it is and make them aware and hopefully make them better people in general.”
After returning to Long Island, Jack, along with the three other Long Island youth ambassadors, will visit schools throughout Nassau and Suffolk County to educate children about the disorder.
Jack, who joined his support group three years ago, said that prior to joining, he never really knew or understood what the disorder was.
“Jack’s been through a lot,” Jack’s mom, Stephanie Muise said. “He’s had a lot of challenges, even just today. He’s really focused on training and how to talk to people about Tourette’s and hoping to raise awareness. He really wants people to understand him.”
Jack said that in his free time he likes to solve Rubix’s Cube and do card tricks. He also sings and is learning to play the piano.
“Over the years I’ve heard great stories about the training in D.C. and presentations the other kids have made,” Jack said in a press release. “I’m really excited that it’s my turn. It will be great to be able to share my story and educate others about a very misunderstood disorder.”