Mendham teenager Emily Carrara has known T.J. Stanley her entire life. But even though the cousins have the same blood running through their veins and have shared laughs, stories, heartaches and other parts of life over the past 18 years, it doesn’t mean they know everything about each other — or at least haven’t known everything all along.
It wasn’t until they were 11 that Stanley, of Basking Ridge, was diagnosed with Tourette Syndrome, and before that point, Carrara had no idea her fun-loving, vivacious cousin had something “wrong” with him.
Even more time passed by — until a graduation party for Stanley’s sister Jackie a little more than two years ago — before Carrara truly became aware of just what TS is (a neurological disorder that affects as many as 1 in 100 people) and how it changes the lives of not only those who have it, but everyone around them.
At that party, Stanley showed Carrara a documentary about his life with TS — appropriately named “TS Has TS” — that the aspiring filmmaker had made and posted on YouTube. After Carrara finished viewing the video, her life was forever altered. ”
A couple days after (the party) I got an idea that I wanted to contact someone,” said Carrara, who sent an e-mail to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) right away. “I definitely didn’t know the extent of what his feelings were. I became informed about it, and I just wanted to do something.”
NJCTS, which at the time had been wanting to organize a walk/run fundraiser for quite awhile, immediately partnered with Carrara to create an event by kids, for kids and about kids with Tourette Syndrome. Soon after, the first New Jersey Walks For TS event, on Nov. 20, 2010, in Mendham’s Borough Park, was born.
The event, which raised more than $27,000 and featured more than 300 walkers, was such a success that this year’s walk — set to take place Saturday, Nov. 19, has an established goal of raising $50,000.
“It isn’t just about how much money we’re going to raise, it is also about the awareness,” said Carrara, who has received quite a bit of help organizing the walk from another cousin, 17-year-old Brendan McCarthy of Ho-Ho-Kus. “But I can raise this money for the cause, so why not go all out?”
Such extraordinary efforts have made the lives of Stanley and other kids with TS a little bit easier.
“Last year at the walk was the first time I met someone that I didn’t know who had Tourette’s,” said Stanley, a senior at Ridge High School who is one of only three students of which he is aware that has TS. “It was shocking, but it was a really cool experience, to learn that I’m not alone.”
And having this event in Mendham, where Carrara says there are quite a few students with Tourette and a great need for more awareness, is important.
“There’s a lot of kids that I didn’t even know that have it in this town,” Carrara said. “I’ve learned about the different kinds of tics (facial, motor, verbal), and even though I know a lot, there is still so much to learn.”
Read much more from Carrara and Stanley on NJCTS’ latest venture, the Teens4TS blog.
This year’s New Jersey Walks for TS event, also at Mendham’s Borough Park, will begin with registration and stretching at 9:30 a.m., followed by the walk/fun run at 10 a.m. Among the performing entertainment acts will be Danielle Piacentile, a teenager with TS who will sing the National Anthem; Sparkee, the Somerset Patriots’ mascot; the Band of Jugglers, who will thrill the crowd with several balancing acts; Leigh McLachlan, a balloon artist; Al Pal the Town Clown and more.
Opportunities to register both individuals and teams, as well as donate and fund-raise on behalf of yourself and/or others, for the walk are still available by visiting the New Jersey Walks For TS website. Donations will be accepted through Dec. 1.
Prizes will be awarded for the best team banner, best hat and the top individual and team fundraisers. The top fundraising team (two or more people) will receive a package of sports tickets to the Somerset Patriots and the Rutgers University basketball teams, while the best individual fundraiser (not part of a team) will win a one-night stay at the Hanover Marriott.