Tim How
From-(www.people.com)-When soccer star Tim Howardagreed to partner with New Jersey Center for Tourette Syndrome six months ago, he didn't know that he would capture the attention of the nation with 16 saves at theWorld Cup, thrusting the disorder into the spotlight and inspiring his very own internet meme, #ThingsTimHowardCouldSave. But he couldn't be happier.
"The more that I get publicized, the more awareness gets created," Howard, 35, tells PEOPLE. "Sometimes I tic or twitch or cough, and it's a very public thing. The more open people with TS can be, the easier it is to live with it on a daily basis."
The U.S. goalie, who was diagnosed with TS in the sixth grade, teamed up with NJCTS for the Tim Howard NJCTS Leadership Academy, a pilot program catering to youths with the disorder. Tourette syndrome, or, as it is more commonly called, Tourette's, is characterized by physical and vocal tics. Howard's inaugural three-day program, designed to teach kids with TS how to advocate for themselves, ran from Friday to Sunday and welcomed 23 teens, ages 14 to 18.
"As much as we want to help every day, the support system isn't always there for them," Howard says. "When they wake up and go to school, they need to learn tools to cope with and live with TS. That's what the academy is for."
He adds: "Some kids are so empowered, they do it on their own. But for a lot of kids with TS, it's such a visible condition. They're very shy, as ' was, and they try to hide it. They shouldn't have to."
Hallie Hoffman, 14, was one of the lucky teens who attended the academy. "I had so many questions about what it's like to get married or go to college with Tourette's," she tells PEOPLE. "I'd never really met anyone who was an adult with the disorder."
The intensive program was led by adult coaches also diagnosed with TS and featured a variety of experts on the disorder, including noted Yale psychiatrist Dr. Robert A. King.
"The kids attended workshops to teach them about themselves, their disorder, their strengths," Faith W. Rice, executive director of the NJCTS, tells PEOPLE. "They learned how to be resilient."
While the program offered looks at the biological and psychological perspectives of TS, the social component most interested Hoffman.
"There were a lot of really intimate moments where everyone was just so honest with each other," she says. "There was this one workshop where all the coaches sat in a sort of panel, and we just got to ask them any question. It was extremely personal, but it felt like such a safe environment. We could ask them anything and they would answer."
One of her primary concerns? "What's it like to date or marry someone without Tourette's?" Hoffman asks. "What do they think of you? It affects our friendships, but it's a lot different when you're talking about somebody you're going to spend the rest of your life with."
For her part, coach Marisa Lenger, 29, wasn't afraid to share her bad dating experiences with the group. "I had a situation once where a guy got very quiet when I brought it up in conversation," she tells PEOPLE. "And he said, 'It's going to take me a while to get used to you.' I tossed 40 bucks on the table and walked out."
Now she's in a great relationship. "With my boyfriend now, it's never been a question," Lenger says. "He always tells me I'm so comfortable with it, I've never given him an excuse to be uncomfortable with it. I've never made it a point of dismay."
Lenger's advice to teens with TS is to not be afraid to laugh about it. "There are things about Tourette's sometimes that are funny," she says. "I twitch my head to the side. And I can't stand next to a wall because there have been too many times to count where I've accidentally hit my head on the wall."
Overall, the weekend was a success, and Howard hopes to host the program on a yearly basis. "We'd like to expand the academy sooner rather than later," he says.
"There were many tears and there was much laughter," adds Rice of the inaugural weekend.
"Well no one actually cried," Hoffman clarifies. "I'd say some of the adults got emotional when it was over. I think they were sad to see it end."
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"The more that I get publicized, the more awareness gets created," Howard, 35, tells PEOPLE. "Sometimes I tic or twitch or cough, and it's a very public thing. The more open people with TS can be, the easier it is to live with it on a daily basis."
The U.S. goalie, who was diagnosed with TS in the sixth grade, teamed up with NJCTS for the Tim Howard NJCTS Leadership Academy, a pilot program catering to youths with the disorder. Tourette syndrome, or, as it is more commonly called, Tourette's, is characterized by physical and vocal tics. Howard's inaugural three-day program, designed to teach kids with TS how to advocate for themselves, ran from Friday to Sunday and welcomed 23 teens, ages 14 to 18.
"As much as we want to help every day, the support system isn't always there for them," Howard says. "When they wake up and go to school, they need to learn tools to cope with and live with TS. That's what the academy is for."
He adds: "Some kids are so empowered, they do it on their own. But for a lot of kids with TS, it's such a visible condition. They're very shy, as ' was, and they try to hide it. They shouldn't have to."
Hallie Hoffman, 14, was one of the lucky teens who attended the academy. "I had so many questions about what it's like to get married or go to college with Tourette's," she tells PEOPLE. "I'd never really met anyone who was an adult with the disorder."
The intensive program was led by adult coaches also diagnosed with TS and featured a variety of experts on the disorder, including noted Yale psychiatrist Dr. Robert A. King.
"The kids attended workshops to teach them about themselves, their disorder, their strengths," Faith W. Rice, executive director of the NJCTS, tells PEOPLE. "They learned how to be resilient."
While the program offered looks at the biological and psychological perspectives of TS, the social component most interested Hoffman.
"There were a lot of really intimate moments where everyone was just so honest with each other," she says. "There was this one workshop where all the coaches sat in a sort of panel, and we just got to ask them any question. It was extremely personal, but it felt like such a safe environment. We could ask them anything and they would answer."
One of her primary concerns? "What's it like to date or marry someone without Tourette's?" Hoffman asks. "What do they think of you? It affects our friendships, but it's a lot different when you're talking about somebody you're going to spend the rest of your life with."
For her part, coach Marisa Lenger, 29, wasn't afraid to share her bad dating experiences with the group. "I had a situation once where a guy got very quiet when I brought it up in conversation," she tells PEOPLE. "And he said, 'It's going to take me a while to get used to you.' I tossed 40 bucks on the table and walked out."
Now she's in a great relationship. "With my boyfriend now, it's never been a question," Lenger says. "He always tells me I'm so comfortable with it, I've never given him an excuse to be uncomfortable with it. I've never made it a point of dismay."
Lenger's advice to teens with TS is to not be afraid to laugh about it. "There are things about Tourette's sometimes that are funny," she says. "I twitch my head to the side. And I can't stand next to a wall because there have been too many times to count where I've accidentally hit my head on the wall."
Overall, the weekend was a success, and Howard hopes to host the program on a yearly basis. "We'd like to expand the academy sooner rather than later," he says.
"There were many tears and there was much laughter," adds Rice of the inaugural weekend.
"Well no one actually cried," Hoffman clarifies. "I'd say some of the adults got emotional when it was over. I think they were sad to see it end."
Students at the academy
COURTESY FAITH W. RICE, NJCTS
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