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Fundraising plays a big role in Tourette Syndrome education and awareness

We don’t know who will cross the finish line first on November 15 in the 5th annual NJ Walks for TS at Mendham, but “Christian’s Crusaders” are in the lead for fundraising, with $6,600 raised to date, and Lee Concepcion is challenging other teams to “bring it on!”

“This is bringing out my competitive side,” she admits, “and I want to win, but I have to let others know how easy it is to form a team and raise money. After all that my family has received from the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), we couldn’t pass up this opportunity to let other TS families have the benefit of the same support.”

Nine-year-old Christian Concepcion was diagnosed with TS in August 2013. Lee recognized the tics — jerking motions so severe that she became concerned that he would injure himself – but she wasn’t prepared when her pediatrician said it could be TS.

“I burst out crying,” she says. “The next few months were a nightmare, emotionally. I became obsessed with looking up all the information I could find on TS.  We contacted the NJCTS TS Clinic at Rutgers, and by October, we were seeing a clinician and Christian was participating in a workshop on social skills.”

TS Teen Ambassador program Changes Lives

When Christian’s TS intensified, Lee contacted NJCTS again.

“Our school has been wonderful, and when I heard about the Youth Advocate Program, I called NJCTS,” she says. “That was all I had to do.  They set everything up with the school, and they sent us Tommy Licato — a demi-god.”

Licato, who is one of the Walk’s youth co-chairs, gave a simple, direct presentation that has inspired Christian to already look forward to becoming an NJCTS Youth Advocate himself.

Money Raised Through Family, Friends, Employer Match

“It’s been so fun and easy to raise money for the walk,” says Lee.  “My aunt put a notice in her church bulletin. Christian’s school is holding a dress-down day, with the money going to the team. And my husband’s employer has a matching program for employee donations.  NJCTS wasn’t on the list, but it was easy to add it.”

“The difference the NJCTS Youth Advocate program has made for our family is overwhelming,” adds Lee. “That’s why I feel so strongly about giving back through this walk. There is no way I would ever want another family to think that TS is something you can’t get through.  Thanks to NJCTS, we know we can, and we know that our son’s future is limitless.”

Please stand up and walk the walk by joining NJCTS and scores of youth advocates from across the state to promote awareness, acceptance, action and advocacy of Tourette Syndrome and its associated disorders. This event will strengthen the statewide education outreach and peer advocacy programs of NJCTS, which supports children and families with TS, ADHD, OCD, anxiety disorders, Asperger’s Syndrome and other neurological disorders.

It’s not too late to walksponsor a team, or donate.

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