Hillsdale Teen Inspires his Community to Tackle Tourette Syndrome

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette's walk on May 22, 2016.

NJCTS Youth Advocate Mike Hayden and T3 co-organizer Meghan McIntyre welcome NJCTS Education Outreach Coordinator Gina Maria Jones at the Teens Tackle Tourette’s walk.

Mike Hayden is taking his Tourette Syndrome advocacy efforts to the next level.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics and is frequently accompanied by other neurological or mental health disorders. 1 in 100 school-age children lives with TS and many report feelings of isolation and have been bullied because of their disorder.

Hayden, now 16-years-old, was diagnosed with TS in fourth grade although he started showing symptoms in kindergarten. In 2012, he decided that he wasn’t going to let his diagnosis hold him back so he stepped up to become a Youth Advocate for the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

NJCTS Youth Advocates lead presentations about TS in schools and community groups to raise awareness, promote understanding and tolerance, and deliver a strong anti-bullying message. They also present with NJCTS-partner doctors at hospitals to educate medical professionals about TS.

When it was time for Hayden’s honors English class at Pascack Valley High School to choose an issue to which to bring attention for their final project, Hayden shared his personal journey with TS and the class was instantly inspired. They organized the group “Teens Tackle Tourette’s” and spent the school year organizing, promoting, and producing a fundraising walk.

“It was an incredible feeling to know that my class truly cared about this cause,” said Hayden. “They knew it was close to my heart and I had many people tell me that there was no question in their mind that this is the cause they wanted to support. It is amazing that they would support me in raising awareness for this issue that many people are incorrectly educated on.”

Hayden recalled that when his family needed help after he received his TS diagnosis they called NJCTS for education and support. To better educate his classmates, he decided to partner with NJCTS Education Outreach Coordinator Gina Maria Jones and Executive Director Faith Rice for a series of in-class presentations about Tourette Syndrome and associated disorders.

“I figured that if we were going to learn about TS, we might as well get the experts in to help teach us,” said Hayden on reaching out to NJCTS for guidance. “I have had many years of experience with NJCTS, so I know that they are truly the best of the best when it comes to education and outreach.”

The Teens Tackle Tourette’s T3 walk took place on May 22 at the Pascack Valley High School Campus and raised more than $1,120 which was donated to NJCTS. During the walk, there were several guest speakers as well as food, games, and giveaways.

“NJCTS is proud to work with young people who take the initiative to raise awareness,” said Education Outreach Coordinator Gina Maria Jones. “It is because of Youth Advocates like Mike that our Youth Development programs are so successful and we hope that all kids living with TS will follow in his footsteps.”

Soon after hosting the Teens Tackle Tourette’s walk, Hayden led a Youth Advocate presentation to 150 fifth graders at Fairmount School in Hackensack on May 24 and delivered the keynote address at the Dare to Dream Student Leadership Conference at William Paterson University in Wayne, NJ on May 25.

“Youth Advocates like Mike Hayden live out the mission of NJCTS and advance public perception, understanding and acceptance of people with TS and associated disorders,” said NJCTS Executive Director Faith Rice. “We are so proud of everything Mike has accomplished.

Teens tackle Tourette’s with fundraising walk

NJCTS Youth Advocate Mike Hayden inspired his high school English class to organize, promote, and host a TS awareness event with “Teens Tackle Tourette’s.” They recently held their main event by hosting an awareness walk on their HS campus. Over the past few months, NJCTS and Mike have educated his class about Tourette Syndrome and answered questions about the misunderstood disorder. The T3 students are a passionate group and we are so proud of all they have accomplished. Check back soon for more pictures and details.

A group of students enjoy the Teens Tackle Tourette's (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

A group of students enjoy the Teens Tackle Tourette’s (T3) walk, held at Pascack Hills High School on Sunday, May 22. The class raised more than $1,120 for the New Jersey Center for Tourette Syndrome. Pascack Hills student Michael Hayden poses with Dr. David Levesque, of Westwood. The two have Tourette syndrome and have made it their mission to spread the word about the disease.

Read the story in Pascack Valley Community Life.

#My5ChangesLives

#My5ChangesLives

#My5ChangesLives

Invest in NJCTS Youth Development programs

Donate at http://gofundme.com/TimHowardTSFund

  gfm_logo_300dpiWe are introducing a social media campaign to help raise money for NJCTS Youth Development programs including the NJCTS Tim Howard Leadership Academy and we want you to join us. As you may know, we are trying to build momentum to increase GoFundMe donations and a little goes a long way. If we can get as many people as possible to donate just $5 we can make a difference.

Invest in NJCTS Youth Development programs. Donate at http://gofundme.com/TimHowardTSFund

Donate $5 or more and challenge your friends and family to do the same. Then, take a picture of your hand, your 5, and use the hashtag #My5ChangesLives on Facebook, Twitter, and Instagram.

Your messages can be as simple as:

  • Or share your story and add… Please give me “5” by donating $5 (or more) to NJCTS Youth Development programs. http://bit.ly/1IROIoA #my5changeslives

As many as 20,000 kids in NJ have TS. That means there are thousands who would benefit. If we all gave a little, the NJCTS Youth Development programs will grow to meet the needs of more kids and teens. All it takes is $5 to change lives, share at http://bit.ly/1IROIoA. Imagine what we can do with more!

Thank you for your 5!

Our connection with Tim Howard & NJCTS … in print!

Hi everyone! Some of you may have seen this article on CentralJersey.com last week that talked about “a mother’s connection between her children and a soccer legend.” I just wanted to share with you the e-mail my mom sent the reporter that led to the wonderful story. I hope you enjoy it!

PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, "The Keeper: The Unguarded Story of Tim Howard," about the soccer legend’s life with Tourette Syndrome.
PHOTO BY PAM HERSH/Leslie Kowalski proudly shares a copy of the book, “The Keeper: The Unguarded Story of Tim Howard,” about the soccer legend’s life with Tourette Syndrome.

I know you saw me in the emotional place of just having seen my children beautifully described in a national book, but bringing it home and quietly having the time to read Tim Howard’s book has been a very rewarding experience.  Of course it’s a story of his life in the world soccer stage, but I know that very close to his heart is Tourette/OCD advocacy.

He describes extremely well what it feels like to have tics, sensory issues and compulsions — something that so few people understand.  He also describes his own evolution as a TS advocate and wanting to keep that cause central to his work and how that advocacy grounds him.

It started with contacting the amazing and wonderful Faith Rice (the director of the NJCTS) many years ago, and continued with winning a $50,000 Pepsico grant to support programs for kids with TS (which has ultimately led to the development of the unique and extraordinary Tim Howard Academy — http://www.mycentraljersey.com/story/news/local/outreach/caring-communities/2014/07/17/us-goalie-tim-howard-gives-face-tourette-syndrome/12795993/  and  http://news.rutgers.edu/feature/world-cup-superstar-tim-howard-inspires-tourette-syndrome-program-making-debut-rutgers/20140720#.VI7ITNxb474), and also joining the NJCTS board of directors so that he can help very directly.

It’s been 3 years since our trip to the UK to meet Tim Howard.  Today, Tess is 15, and is homeschooled; Paige is 11 and attending public school and is thriving.  In many ways our trip to meet Tim Howard (and his mom, who is lovely, too) still looms large in our lives.

Continue reading

NJ Walks for TS at Mendham photos … we had fun!

Here are some photos of me and the other Youth Advocate Co-Chairs from the 5th annual NJ Walks for TS at Mendham on November 15. Hundreds of people came out to support the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), TS awareness and Tourette education for every school in New Jersey!

Continue reading

You can be a part of #GivingTuesday!

Tuesday, December 2 is #GivingTuesday! As part of a global movement that inspires a celebration of giving to kick off the holiday season, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to be a part of #GivingTuesday.

You can join in this effort with a donation to NJCTS on December 2! With #GivingTuesday, the holidays can be about both giving AND giving back! Everyone wins! And joining the movement is as easy as 1-2-3:

  1. Simply decide you’re going to donate. Then, once you do, then share the photo below with EVERYONE you know on Facebook and Twitter to announce that you’re going to donate to NJCTS on December 2.
  2. Donate to NJCTS on #GivingTuesday by visiting http://www.njcts.org/donate-form.php.
  3. After donating, come back to the Teens4TS blog to share another photo we will provide that will announce that you donated! You also can get this “I GAVE TO NJCTS!” photo by visiting the NJCTS Facebook page.

Thank you for considering being a part of #GivingTuesday!

NJ Walks for TS really making a difference all over New Jersey

My name is Sarah. I’m a senior in high school, a Youth Advocate for the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) and Youth Co-Chair of the 5th annual NJ Walks for TS event in Mendham, NJ.

I am writing to urge you, your family and friends to come out and join us when NJ Walks for TS at Mendham on November 15. Click here to register.

All proceeds from this very special event support the NJCTS Education Outreach Program which provides information and training to teachers, doctors and students statewide to ensure greater understanding and acceptance for kids and adults living with Tourette Syndrome.

I have been a part of this program for the past four years and have personally presented a message of acceptance and stigma-conquering facts to well over a thousand school kids, teachers and doctors.

Not only does the program educate professionals but it provides kids like me with an opportunity to develop skills as a public speaker and advocate; and it also strengthens my ability to deal with my own Tourette Syndrome diagnosis.

Parents of kids with TS also present workshops to teachers and doctors and TS experts join our team to present grand rounds at hospitals in every part of New Jersey.

To date, more than 60,000 NJ teachers and doctors have attended our presentations. Please help this program to continue to grow by giving generously to our Walk and throughout the year.

We are happy to provide any additional information on this and other NJCTS program offerings. Thanks for helping us make an enormous difference in the lives of so many kids and families.

See you on November 15 when NJ Walks for TS at Mendham. Here is another way you can participate, too!

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.

5th annual NJ Walks for TS at Mendham event features 3 dynamic youth co-chairs

The 5th annual NJ Walks for TS at Mendham event is set to take place Saturday, November 15, in New Jersey’s picturesque Morris County. Funds raised by this year’s walk will benefit the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Education Outreach Program, which trains teachers, doctors, nurses and other professionals about how to identify, diagnose and manage TS.

Many of the programs involve Youth Advocates, and their work is coming full circle. The 2014 Youth Co-Chairs are a product of NJCTS outreach and training.

Each member represents a different stage in growing up and a different stage of involvement in NJCTS advocacy programs. What these uniquely talented young people share is  a commitment to helping others with TS live in a world more tolerant and accepting to this misunderstood condition.

Sarah Ethridge of Chatham and Tommy Licato of South Plainfield are experienced advocates: Both were selected to the inaugural class of the Tim Howard NJCTS Leadership Academy. They travel to hospitals across New Jersey (and even Yale University) to educate doctors about TS and deliver anti-bullying school in-service presentations to hundreds of students.

Tommy is in his mid-teens, Sarah is a high school senior, and they are joined by 11-year-old Erin Miskell of Nutley. They each play an important role in this year’s walk and encourage others to get involved. Here’s a little bit about each co-chair:

Continue reading