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Walk into almost any high school cafeteria in America and you’re likely to see cliques- But the dining room at the Tim Howard NJCTS Leadership Academy was remarkably different. "No one sat alone, you had athletes and artists- shy kids and outgoing ones- sitting side by side," said Faith W. Rice, executive director of the New Jersey Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS). The teens were embarking on a journey of self-discovery, as Rice explained "to learn more about themselves, anticipate challenges and build upon their strengths”. Despite differences in their hometowns, hobbies and interests- each of the 22 participants shared the bond of Tourette Syndrome (TS). This neurological disorder causes involuntary muscle movements and vocalizations known as tics. As many as 1 in 100 people show signs of TS which is frequently accompanied by other disorders including ADHD, OCD and learning disabilities.
In the days following the three-day event, the teens described the Academy as "life changing."
"Just having the chance to be around others living with the same disorder is a powerful thing but combining that with opportunities to learn strategies for dealing with the disorder and how to build upon your talents made the weekend truly a one of a kind experience " said Rice.
"Now I know what other people with TS look like and how they succeed in their daily lives," said Hallie Hoffman of Hillsborough, NJ. "It’s all so different."
Hoffman was particularly impressed with the level of information shared by leading TS experts in brain biology, psychology and social skills.
"I love to talk about TS and educate people on it," said Hoffman "But now I feel a lot more confident in knowing the correct information about TS and I’m confident in the facts."
Part of the mission of NJCTS is to break the stigma and correct misinformation about TS. "Knowledge is power," said Rice, "we’re pleased to offer this innovative learning experience." Through the Academy, participants were educated on the latest in TS research and treatment options- but also the soft skills needed to live successfully with a very visible disorder.
For Lewis Victor of East Aurora, NY, before the Academy, he struggled to suppress his tics- to the point of physical pain.
After meeting a group of confident and successful young adult "coaches" at the Academy, his muscles no longer have to ache.
"I feel a lot better, because I was keeping so much in," said Victor. And he says the information gained through the weekend is already making a difference in his social relationships.
"I haven’t been suppressing my tics and I just started a new job- a coworker asked me about it and we got into a long conversation about TS," said Victor, pleased with his new knowledge and the response of his new friend.
The first class of the Tim Howard NJCTS Leadership Academy are already changing the climate for those who have TS and a new generation who have yet to receive this diagnosis. They are drawing strength from each other and the education and bonds fostered at the Academy are strong.
"I’ve been keeping in touch with some [classmates] from the Academy," said Victor.
So has Hoffman who "just became so close with everyone…it was meant to be."
No cliques at this Academy, just kinship and an understanding that this group learned a great deal about themselves and their shared disorder and will now advocate for themselves, each other, and the thousands with TS and its associated disorders they haven’t met yet.
For more information about the Tim Howard NJCTS Leadership Academy, or about TS, call 908-575-7350 or visit www.njcts.org.
New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the Tourette Syndrome community
