Teen works for Tourette's understanding

Dylan Brady, 14, who was diagnosed with Tourette syndrome in August, is now a Tourette's ambassador and speaks at schools to dispel myths about his condition. He recently sang and played percussion at the Long Island Tourette Syndrome Association's annual fundraiser. Videojournalists: Ed Betz and Chris Ware (June 15, 2013)

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Dylan Brady is a rock star, sort of.

He is the lead singer and plays drums in a band, has hazel eyes, a slim build and a fauxhawk hairstyle. When he visited Glen Head Elementary School in May, the fifth-graders he was there to see clamored for his autograph.

"You're really cool," they told him.

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When Brady, 14, a high school sophomore, graduates from college, he said his dream is to become a musician, singing and playing his music onstage with his fraternal twin, Cody, or as a solo artist.

But for now, his stage is a rapt audience of students who aren't there to hear his musical stylings. He's got another message for them, which he delivers as a Youth Ambassador for the Tourette Syndrome Association.

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For a time, his family felt helpless about Brady's tics, his father said.

But "Dylan has been fortunate," his mother added. "His school is supportive."

Brady kicked off his ambassadorship in March, addressing third-, fourth- and fifth-graders at Sea Cliff Elementary School. Cody Brady, who is seven minutes older than his brother, thinks his sibling is a good fit for his new role.

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"It's really good for him and gets him out there," he said. "It shows people there's nothing abnormal about him, just that he has this medical condition that prevents him from doing things as fast as others."

Brady's tics don't inhibit his performances or his singing on his school's Men Aloud Chorus and the Madrigal Singers. But they do affect his schoolwork and sports activities, said Brady, who is on his school's soccer and ice hockey teams. The medication meant to help alleviate his tics makes him lethargic, he said.

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"It's affecting my grades. I'm falling asleep in class. I'm beyond tired all the time." Even so, he noted that he is on the high honor roll at school.

A report Brady wrote for his English class helped him qualify as a Youth Ambassador. In it he wrote:

"Completely relaxed, nothing on my mind but the math test question. Suddenly I move. I move and move again. I cannot concentrate; the tics change the topic in my brain to them . . . The obnoxious taunting of my tics drive me crazy . . ."

Despite his challenges, Brady's family said he inspires them.

"Dylan has to work hard for everything, and he's driven to do well and to be what he can be," his mother said. "We wish for him the same thing we wish for all of our kids, that they have peace and happiness."

Tics don't thwart Brady's hopes for his future, which include wanting to motivate people with weight issues to get healthy. Or stop him from signing autographs.

As he noted at the end of the essay for his Youth Ambassador application:

"I will always pursue my passions in life and continue to do my best. Tourette's will not stop me. I have Tourette's, Tourette's doesn't have me."

On becoming an ambassador

The Youth Ambasador program was founded a decade ago by Jen Zwilling, who at the time was a Long Island preteen. "Any interested youth can go online, get the information and learn to do the presentation," she said. "We know that we reach millions of people. We hear from people all over the world that they are doing presentations because of the information on the TSA website (TSA-USA.org)."

For more information and resources on Tourette's, visit:

li-tsa.org or send an email to

longisland.tsa@gmail.com

Entertaining duo

Dylan and Cody Brady perform as a duo at social events. Dylan sings, plays the ukulele and the cajón (drum) box while Cody plays keyboard and electric bass guitar. See them perform:

July 13 in Sea Cliff at the Sea Cliff Palooza

Aug. 1 at Sea Cliff's Sunset Serenade Park

Test your Tourette's knowledge

1) What is the TSA motto?

2) True or false: Those with Tourette's make involuntary physical movements or vocal sounds known as 'ticks.'

3) True or false: Tourette's, which affects children and adults, is a hereditary disorder.

4) True or false: Tourette's can be cured with medication.

5) Which French neurologist is the disorder named after?

6)True or false: It is not important to treat Tourette symptoms early.

7) True or false: The Youth Ambassador program is an advocacy platform designed only for those who have Tourette's.

8)True or false: Those diagnosed with Tourette see onset before the age of 18.

9) Approximately how many people in the United States have been diagnosed with Tourette syndrome?

10) What are common Tourette symptoms?

Source: Tourette Syndrome Association

Answers:

1) "I have Tourettes but Tourette's doesn't have me."

2) False; they make 'tics.'

3) True

4) False

5) Georges Gilles de la Tourette

6) False

7) False

8) True

9) 100,000

10) Facial grimacing, tongue clicks, winking, blinking, kicking, sniffing, throat-clearing, yelping, shoulder-shrugging, head-jerking, jumping, touching others, twirling

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