NORTHPORT, New York, Mar. 12
BY: Andrew Wroblewski
Now a freshman at Northport High School, four years ago, Jack Muise was confused.
At 10 years old, Muise had a few symptoms – he was coughing, calling out in class, not anything unusual for a young boy, he said – but then they changed.
“I didn’t really understand it all that well,” Muise, now 14 years old and diagnosed with Tourette syndrome, said.
The coughing and calling out in class turned into coprolalia, attention deficit disorder, obsessive-compulsive disorder, depression and anxiety – all symptoms that he now battles on a day-to-day basis.
“It was hard to get through,” he said.
Now, Muise is hoping to help others get through and understand what he battles each day – he was named youth ambassador by the national Tourette Syndrome Association (TSA) on March 3.
With the TSA, Muise and a select group of others will head to Washington, D.C. from March 23-25 to complete a training program that will enable them to educate their peers and younger children with accurate information on Tourette syndrome and other Tic disorders.
The Northport native is thrilled to have the opportunity to help others understand the very same disorder that confused him just a few years ago.
“I want to be able to raise awareness,” he said. “I want other people to understand these disorders, not just like mine, but all of them.”
One of three Long Island teenagers selected by the TSA – which was founded in 1972 and claims to be the only national, voluntary health organization serving the Tourette syndrome community – following the training, Muise will travel to classrooms, school and clubs to teach understanding, sensitivity and tolerance for Tourette syndrome and its symptoms.
“Over the years I’ve heard great stories about the training in [Washington, D.C.] and presentation [that] the other kids have made,” Muise said. “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.”
Just as Muise said, the program also aims to displace myths and stereotypes often associated with the disorder.
“The goal of this exciting program is to educate children all over the country about [Tourette syndrome], a widely misunderstood disorder. We are following the motto ‘think globally, act locally,’” Jennifer Zwiling, founder of the program, said in a press release.
On March 25, all those involved in the program’s training are set to participate in National Advocacy Day, during which they’ll meet with local, elected officials on Captiol Hill to inform them of how Tourette syndrome is affecting themselves and those around them.
“All participants are committed to the goal of the Youth Ambassadors – promoting awareness, acceptance and understanding of Tourette syndrome,” Annetta Hewko, TSA president, said.
Originally published: Long Islander News: Half Hollow Hills
(Thursday, Mar. 12, 2015; A5)