Skier races toward Tourette Syndrome Awareness

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler and her family received a proclamation from Jefferson Township Mayor Russell Felter which recognizes June 4th as TS Awareness Day.

Kyla Butler of Oak Ridge, NJ, is making a name for herself not only as one of the top skiers in the tri-state area but also as an advocate for Tourette Syndrome.

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.

Kyla was diagnosed with Tourette Syndrome in third grade but she never let it hold her back. This past March, Kyla represented the state of New Jersey in Gilford, New Hampshire at the Pice Invitational Ski Race for the second year in a row. She was invited to participate in this race after placing in the top 10 in her age group and third in New Jersey this year.

Now, this sixth grader strives to raise awareness of this misunderstood, misdiagnosed disorder and she is starting in her own backyard. On May 18, 2016, Kyla met with Mayor Russell Felter and asked him to recognize June 4th as Tourette Syndrome Awareness Day in Jefferson Township.

Kyla encourages everyone to learn more about Tourette Syndrome to combat the stigma these children face. Her efforts represent the spirit of The GreaTS movement which recently was launched by the NJ Center for Tourette Syndrome and Associated Disorders, Inc (NJCTS) and soccer star Tim Howard. The GreaTS is a worldwide movement which aims to help individuals with TS and associated mental health disorders develop the confidence, leadership, and self-advocacy skills necessary to overcome their challenges and find their own paths to personal greatness.

“We applaud Kyla’s good work and she is part of a statewide effort to have June 4th recognized as Tourette Syndrome Awareness Day in every corner of New Jersey,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making biases a thing of the past. Kyla is truly One of The GreaTS!”

The Butler Family proudly displays their Mayor's proclamation

The Butler Family proudly displays their Mayor’s proclamation

NJCTS Youth Advocate featured on ABC’s “Protect Our Children” special

PROTECT_OUR_CHILDREN_Date Time WABCOn April 16th, ABC aired the, “PROTECT OUR CHILDREN: COPING, STRESS, & MOVING FORWARD” special hosted by Eyewitness News Anchor, Diana Williams. This special describes what experts are referring to as an epidemic of stress-related problems plaguing our children. It’s not easy being a kid these days and the American Psychological Association says one in three teens is stressed. Doctors report they are treating kids as young as six for Migraines and Ulcers. NJCTS Youth Advocate Tom Licato of South Plainfield, NJ, was featured in the program along with other young people dealing with physical, mental, and economic stress-related problems.

“Meeting a 17 year old High School Junior on a mission to educate others about Tourette Syndrome, he’s clearly a leader and a powerful advocate,” said the special’s producer, Jeelu Billimoria. “Finally being diagnosed in 6th grade was a relief for him and he continues to be treated at Overlook Medical Center’s Neuroscience Institute.”

Click here to watch one of NJCTS’s finest advocates on ABC.

 

October is National Bullying Prevention Month

The NJ Center for Tourette Syndrome joins the movement to prevent bullying,
expanding its Youth Advocate Program

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

NJCTS Youth Advocate Mike Hayden presents to the Cresskill school district.

This October, schools and organizations all across the country are observing National Bullying Prevention Month. All students should feel safe in school and have the opportunity to grow and thrive, academically and socially, and through its  Youth Advocate program, the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is taking special steps to prevent bullying.

NJCTS Youth Advocate presentations inform youth about Tourette Syndrome (TS)—a misunderstood and misdiagnosed disorder that affects 1 in 100 school-aged children who are often the targets of bullying. Advocates are 13- to 18-years-old and either have a TS diagnosis or live with a sibling or family member with TS. In addition to providing an overview of the neurological disorder, the Advocates promote understanding and tolerance, and deliver a strong anti-bullying message. The presentations have grown to include a discussion of the Six Pillars of Character: Trustworthiness, Respect, Responsibility, Fairness, Caring, and Citizenship.

“NJCTS has long been and continues to be one of the most important organizations addressing childhood bullying in NJ schools,” said Dr. Stuart Green, Director of NJ Coalition for Bullying Awareness and Prevention and Associate Director of Overlook Family Medicine. “Their innovative youth advocacy program provides a much-needed service. The program empowers and gives voice to youth with TS, shines a light on a commonly misunderstood and stigmatized condition, and helps NJ youth and their teachers strengthen their empathy for those who are vulnerable and targeted. The NJCTS Youth Advocates are heroes for an important cause – they deserve our recognition and support.”

In recognition of the efforts to improve school climate and reduce rates of bullying, NJCTS regularly coordinates Youth Advocate presentations in schools and community groups, reaching thousands of students throughout New Jersey. Since the program’s launch in 2009, NJCTS Youth Advocates have conducted more than 250 presentations, raising awareness and increasing sensitivity and understanding.

“Our Youth Advocates foster understanding, sensitivity, and tolerance of TS while displacing the myths and stereotypes that are often associated with this misunderstood and misdiagnosed disorder,” said NJCTS Executive Director Faith W. Rice. “By educating others, we hope that each new generation will grow up with a better understanding of TS, making biases a thing of the past.”

During National Bullying Prevention Month, NJCTS will be training a new “class” of Advocates on Saturday, October 24 from 10 a.m. to 4 p.m. at the Morris County Library, 30 East Hanover Ave., Whippany, NJ 07981.

For more information or to attend the training, please contact Gina Maria Jones, M.Ed, NJCTS Education Outreach Coordinator, at gjones@njcts.org or 908-575-7350.

Award-winning Dawson Coyle to perform at Sunday’s NJ Walks for TS at Medford Lakes

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

South Jersey singer/songwriter Dawson Coyle to perform at NJ Walks for TS at Medford Lakes on September 20.

The first South Jersey 5K for Tourette Syndrome is coming to Medford Lakes this Sunday and Dawson Coyle can’t wait.

The Gloucester County native is making a name for himself throughout the region as an award-winning singer/songwriter and will bring his sound to NJ Walks for TS.  He says encouraging audiences with his music is a big part of what he does, but this event holds an even deeper meaning for the 16-year-old.

Dawson was diagnosed with Tourette Syndrome (TS) at the age of five. A neurological disorder, TS is characterized by involuntary movements or sounds known as tics. As many as 1 in 100 children exhibit symptoms of TS which is frequently accompanied by ADHD, obsessive-compulsive disorder, mental health issues, and learning disabilities.

“Having TS and being aware of the everyday struggle of all that comes along with it makes it a very real issue for me,” he said.

NJ Walks for TS is a day of advocacy and awareness, started for kids, by kids to benefit kids with Tourette Syndrome. In addition to encouraging peers and younger kids to embrace life by connecting with something they enjoy doing, Dawson would like to help bring the public to a greater understanding of TS.

“This is not a joke,” he said, “I’ve heard the term [Tourette] negatively in describing others as a joke my whole life and it’s not funny.”

“For me, personally, when I hold back my motor tics, it’s like holding back a blink but in every part of your body—it’s exhausting,” he said. “[TS] waxes and wanes, it’s very possible to see me not ticking for extended periods of time…there is no rhyme or reason.”

For Dawson, and many of the other 20,000 school aged children and teens with TS, the outward appearance is the tip of the iceberg.

“Many times we struggle with our thoughts,” he said. “Depression, anxiety, OCD and so many other things come along with it.”

Ultimately, he wants everyone—especially those struggling with the disorder—to know that “those things do not have to overtake someone with TS.”

Dawson credits his faith, parents and music for helping him keep a positive mindset.

“I really want to be an encouragement to others with TS,” he said, “to show them that they can find something they’re good at, work hard at it and, in return, can also encourage and inspire others.”

All proceeds from NJ Walks for TS at Medford Lakes will benefit the NJ Center for Tourette Syndrome’s (NJCTS) Education Outreach Program, which delivers in-service trainings to schools and hospitals across the state, youth leadership training, and scholarships.

To register or donate, visit http://njcts.org/walk. On-site check-in begins at 8 a.m., Sunday, Sept. 20 at Beach 1/Vaughan Hall (Tabernacle Road) in Medford Lakes.

For more information on Dawson Coyle, visit http://www.dawsonmusic11.com/

2015 NJCTS Youth Scholarship Award Essay: “I Am Who I Need To Be”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2015 Children’s Scholarship Award contest. I hope you enjoy it!

MaroG

MaroG

Growing up I never really understood much about Tourette syndrome other than it made me twitch all the time and I never made many friends because of it. I was quickly rooted out as the weird kid in the third grade, when it first developed, and it didn’t get much better the following year, or the one after that. I was never very popular and I was typecast as the weird twitchy kid with no friends up threw middle school. It’s not that I was bullied; rather everyone in school always ignored me so that I was never included in games or parties because I guess sitting near the kid who had a twitch was too uncomfortable for all of them and it was easier to push me aside. But what really bothered me was that if they thought it was uncomfortable for them then they really didn’t understand how much the twitching bothered me. Needless to say I spent most of my time alone when I was younger because of this and even though most would probably be very upset about this I learned to manage it. Yes it would have been nice to have a few friends growing up, but more importantly this taught me a sort of independence that is very important to me now.

Even though Tourette’s makes focusing on a single spot very difficult for me when I’m constantly jerking my head from side I have loved reading ever since I was young. In middle school, when I still didn’t have any friends I’d read every day to pass the time simply because it was better than doing nothing. I read because I’m bored and I have a lot of free time on my hands in and out of school. Or at least that’s how it started back then because as time went on I realized that reading wasn’t just a passing interest, it became necessary for me and it still is.

Eventually all the childish bullying stopped bothering me when I began to realize that I am who I am and there’s simply nothing anyone can do to change it, and I don’t want to change. So if I’m stuck like this I had might as well prepare to be like this for the rest of my life, and I am.

And eventually the bullying stopped all together; my classmates forgot what it was that made them not like me and they forgot that they didn’t like me to begin with after I learned how to control the Tourette’s on my own a little bit better, or maybe they just decided let it go. But unfortunately the damage was done, the end result to all this was I never learned how to interact socially, and I didn’t even realize it until high school. Whenever someone wanting to talk approached me I didn’t know what to say or how I should say it. Should I be serious or joking, sincere or sarcastic, should I try to continue the conversation or try to break away? The idea of having to talk to someone became anxiety, and the Tourette’s didn’t stop, it wasn’t as bad as when I was younger but I was still struggling to focus and not lose control of my head, making any confrontation that much more nerve racking because I really didn’t want anyone to notice.

But that doesn’t mean that I’ve become some sort of social pariah who hides away behind a book all the time. It’s true that Tourette’s was never easy to deal with but that just meant that I had to work through it if I wanted to take back a normal life that I always wanted. Medication was always out of the question because that would only cover the problem, not fix the problem and. I would just be running away from my personal reality. If I couldn’t face that I cant face anything. I had to learn that even though having Tourette syndrome had a big effect on how I ultimately turned out it doesn’t define who I am, and even though I didn’t turn out how I wanted to, I am who I need to be.