3rd annual Youth Advocate 5K’s roots are in Tourette Syndrome community

EDITOR’S NOTE: This story appeared in the Sunday editions of the Central New Jersey Courier News newspaper and on MyCentralJersey.com on October 21.

On Nov. 19, 2010, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) held its first annual 5K to benefit Garden State kids with Tourette Syndrome. Called New Jersey Walks For TS, that initial event was a great day with a lot of effort put behind it.

Now, as the third annual event – now dubbed the Youth Advocate 5K Family Run/Walk – is set to take place at Mendham’s Borough Park on Saturday, Nov. 3, I reflect back on the roots of this wonderful event – which started out with a simple phone call based on an even simpler idea.

I decided I wanted to put my time and effort toward a good cause. Being that my cousin, Basking Ridge native T.J. Stanley, has TS made it the perfect cause to tackle. He had made a documentary about his life and how TS has affected him, and after one viewing, I knew it that it was time to get started on creating an advocacy event.

After sending out mass e-mails about wanting to do some kind of fundraiser for the cause, I got a call back from one organization – NJCTS. They said they were on board with anything I wanted to do and that I called at the perfect time, as they were looking to push forward with an advocacy event, too. I got T.J. and another cousin, Brendan McCarthy, involved and the games began.

Six long months of conference calls, planning, fundraising, interviews, searching for sponsors, designing and e-mails back and forth, finally paid off on that cold November day in 2010. When walk day arrived, everyone involved was so excited for the day to begin. My entire town – I grew up in Mendham and graduated from West Morris Mendham High School this past June – was so supportive.

The local schools and businesses donated money, food and time, and the families who came out to support also donated. We had food, entertainment, prizes and good conversation. My cousins and I gave a speech to kick off the morning, and it could not have been a better day. We raised more than $27,000 that first year, but even more important, we raised awareness for TS and of NJCTS – which is always seeking to promote advocacy on behalf of those with Tourette.

Last year, at the second annual event, we raised another $28,000, and the goal this year is to raise enough to eclipse the $100,000 plateau for the three years. But raising money isn’t the only goal. Before everything started, I had to ask myself, “What really is the goal?” It was, still is and always will be to raise awareness about TS in middle schools and high schools just like mine. T.J., Brendan and I want young people to go out and make a difference in their communities.

That’s what makes this year’s 5K so special. It’s specifically geared toward children – and event by kids, for kids and about kids. The “A-Team,” as NJCTS calls them, these kids are being taught the skills of awareness, acceptance, action and advocacy.

My cousins and I plan to keep being a part of this 5K every year it exists – raising more money, getting more people involved and spreading the word. It was not an easy first six months back in 2010, but it was definitely worth it.

I believe that through the efforts of myself, my cousins, NJCTS and its incredible network of volunteers, people are more aware of the TS cause. More and more people know about this 5K and how Tourette Syndrome has affected so many people’s lives.

I will continue to spread the word, and in the next two years, I want to bring the enthusiasm of NJCTS to my college campus of James Madison University in Harrisonburg, Va., creating a TS support group. You’ll see me, as well as several of my friends from college, at this year’s 5K. Come out and support the TS community, as well as the efforts of NJCTS, my family and the town of Mendham. It’s truly a cause worth supporting.



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