2017 NJCTS Youth Scholarship Award Essay: “Tourette Syndrome will always be a part of me”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Trevor S.

At ten years old, I was diagnosed with Tourette Syndrome and it has had an impact on my life at first. Being so young, I did not really understand what Tourette Syndrome was, or what I was diagnosed with. It made it a little difficult to communicate with friends and let them know exactly what I was doing or why I ticced. One of the things that I wanted to do when I grew up was to learn more about Tourette Syndrome so I would learn more about me as a person. I moved to New Jersey two days before the start of my freshmen year. At the start of junior year, my mom found out about the [NJCTS Tim Howard Leadership] academy and it was an awesome experience. It helped me learned more about myself as I learned a lot more about TS than I previously had. The time I had at the academy left me feeling great that I finally understood who I was and I could explain to people about TS. I explained what TS was to my friends who were curious and I ended up becoming a youth advocate for TS. During the first couple months of school, I attended a presentation and answered questions for the students about TS. I have also attended two TS walks. I have recently been accepted to the academy again and look forward to attending it. Tourette Syndrome has had such an impact on my life that I do not believe I can imagine my life any other way. My letter for college was about Tourette Syndrome and how it had affected my life. I have been accepted into all but one of my colleges and have received the presidential scholarship at every university. Tourette Syndrome is, and will always be a part of me. It does make certain things interesting such as school and sports but it invites me to see new things. In school, I do well and I get to have extra times on my tests when it is needed. While there are some negatives, the positives outweigh the few negatives by a lot. I have made many new friends through the academy and other places and my knowledge in general has increased.

2017 NJCTS Youth Scholarship Award Essay: “Life’s a Twitch”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Anna B.

One of my all time favorite quotes is by Scott Hamilton, “The only disability in life is a bad attitude.” From my own experience, I can honestly say this is very true. Life with Tourette is very unpredictable and sometimes you just have to learn to roll with the punches. I am not always the best at this, according to my parents my attitude is, “less than awesome.” At least it used to be, with age and acceptance it has improved tremendously.  

As a twelve year old who’s tics were becoming more obvious by the day, I decided to make a difference. I wasn’t going to let my so called ‘disability’ hold me back. I knew without explaining myself the kids at school were going to make fun of me because they didn’t understand. That’s why I did research and wrote my own speech to present. If the kids are uneducated and pick on me it’s just because they don’t understand, but if they understand and still are unwilling to accept me then that’s their problem. I gave my very first speech to my class in the sixth grade which coincidentally was also the day I got my diagnoses. All the positive reactions empowered me. During my research I came across the National Tourette Syndrome Association’s Youth Ambassador Training program in Washington, DC, and the New Jersey Center for Tourette Syndrome (NJCTS). I was trained to be an advocate for TS and given a presentation to use in schools. I began presenting professionally to small classrooms but it wasn’t until I became involved with NJCTS that I really began making a difference. I attended the first patient center education training and another training on how to present in classrooms. My sophomore year of high school I spoke to around 50 doctors and other medical professionals about Tourette. Every presentation I did gave me a little boost of confidence, which for a shy kid was life changing.

Though my transition through it all seemed like smooth sailing was far from it. To put it gently, freshman year I was a hot mess. I had developed coprolalia and let it get the better of me. My bad attitude really was crippling. I focused on what was going wrong instead of focusing on how I could use it to my advantage. [NJCTS Family Retreat Weekend at] Camp Bernie changed that for me. I made amazing friends who I am actually talking to as a write this four years later. Hearing their experiences and sharing coping techniques was huge for me. Being in a place where my differences were not only accepted, but embraced as well, was utterly life changing. Steven, a teacher who also struggles with coprolalia, made me realize that even if I didn’t improve I could still be successful and teach special education as well. Once I was able to come to terms with my Tourette I was able to help others do the same.  

Now I am a happy, successful, eighteen year old pursuing my dreams and doing my best to empower those around me to do the same. My favorite example of this was a presentation I did a few years back. A third boy was being bullied for his TS so I did a presentation at his school. After the presentation, he came up to me and said, “Thank you, I think I’m going to have friends now.” It all starts with a good attitude and self acceptance.

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.

NJCTS Youth Advocate Mary Kate Donahue delivers keynote address at Dare to Dream Conference

NJCTS Youth Advocate Mary Kate Donahue delivered the keynote address at the 2016 Dare to Dream Student Leadership Conference at Stockton University on May 9.

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This wasn’t Mary Kate’s first rodeo. She is an accomplished speaker and children’s book author and she loves sharing her story. As a student at Stockton University, she was honored to have the opportunity to inspire high school students visiting her campus.

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“This was an amazing experience,” said Mary Kate. “The kids were awesome and ready to be educated. They were so eager to learn and they are the reason I love doing things like this!”

We’re proud of you, Mary Kate! You are One of The GreaTS!

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NJCTS Youth Advocate Mary Kate Donahue with Dare to Dream MC LeDerick Horne

 

NJCTS Youth Advocate Tess Kowalski delivers keynote address at Dare to Dream Conference

Dare to dream

NJCTS Youth Advocate Tess Kowalski delivered a moving keynote address at the 2016 Dare to Dream Student Leadership Conference at Mercer County Community College on April 29.

The New Jersey Department of Education, Office of Special Education Programs sponsors regional Dare to Dream Student Leadership conferences that highlight strategies and information to prepare high school students with disabilities for college and career readiness. Each conference features keynote presentations from accomplished students and young adults with disabilities who have demonstrated exemplary self-advocacy and leadership skills.

As teens and young adults living with Tourette Syndrome—a misunderstood, misdiagnosed neurological disorder characterized by involuntary sounds and movements known as tics—NJCTS Youth Advocates are uniquely positioned to speak to and inspire others who are overcoming obstacles. Advocates are trained to educate others about Tourette Syndrome promoting acceptance, tolerance, self-advocacy, and leadership.

“Tess did an outstanding job at the Mercer conference,” said Bob Haugh, Project Coordinator for Dare to Dream. And we couldn’t agree more!

NJCTS Youth Advocate Tess Kowalski delivers keynote address at the Dare to Dream conference at Mercer County Community College.

NJCTS Youth Advocate Tess Kowalski delivers keynote address at the Dare to Dream conference at Mercer County Community College.

Youth Advocate Jacob speaks to students at Deal School

Recently, NJCTS Youth Advocate Jacob Gerbman presented to the fifth graders at Deal School in Deal, NJ. The students learned about Tourette Syndrome, acceptance, and treating others with respect. After Jacob’s presentation, the students welcomed their classmate, Nolan, to the front of the room to answer some questions about his experience with TS. Together, Jacob and Nolan helped to create an open and supportive atmosphere for all students in attendance. School counselor Christine Priest said, “Jacob was amazing. He was such as good role model not only to Nolan but the other students as well.” Nolan said afterwards he “felt like a star!”Image-1 Image-3 Image-5 Image-8

Teens Hit the Town for NJ Walks for TS

There’s a pack of girls on the loose in Central Jersey. The Youth Co-Chairs of the NJ Walks for Tourette Syndrome at Princeton are going door-to-door recruiting support for their mission of advocacy on behalf of the 1 in 100 New Jersey kids living with Tourette Syndrome, a neurological condition known for involuntary movements or sounds known as tics.

Tess Kowalski, 16, of Plainsboro; Hallie Hoffman, 16, of Hillsborough; and Ally Abad, 16, of North Brunswick understand the physical, emotional, and academic challenges that accompany a TS diagnosis. All three are uniquely talented and share a passion for demystifying the disorder by volunteering as Youth Advocates through the NJ Center for Tourette Syndrome (NJCTS). They are trained to deliver educational presentations to clinicians, teachers, and peers to build acceptance and understanding of TS.

All proceeds from NJ Walks for TS at Princeton will benefit the NJCTS Education Outreach Program, which provides in-service trainings and Youth Advocate presentations to schools and hospitals across the state, promoting awareness of the disorder.

Tess, Hallie, and Ally are spokespersons not just for the walk, but for the programs the walk will benefit.

“I love to educate the public, teachers, and students about TS so that one day, a kid will have TS and will be accepted because their friends and teachers would have already learned about it,” said Tess. “(As a Youth Advocate) I’m speaking up so that they won’t have to. I hope that soon, a kid with TS won’t have to explain their condition to other kids, that their friends will already know about TS and accept them.”

Tess and her sister Paige, 13, were the inspiration for the Princeton event of NJCTS’s statewide NJ Walks for TS program. The Kowalski Family, led by Tim and Leslie, have served as hosts since 2014. NJ Walks began in 2010 in North Jersey as the first advocacy event for kids, by kids, to benefit NJ kids.

The Youth Co-chairs are asking residents and local businesses for a show of support by registering for the 5K walk/family fun run at www.njcts.org.

Ally invites walkers, runners, kids, and families of all abilities to join the movement on April 3rd because “not only is it a nice thing to do, but it’s important to learn about what other people go through.”

“Having so many people from the local community—whether they have TS or not—makes everyone feel incredibly encouraged and accepted,” adds Hallie. “Whether you have TS or not, the walk is a fun and active event that takes little effort but makes a huge difference for the people affected by its benefits.”

To help these three in their walk for TS, join them on April 3rd at Mercer County Park West in West Windsor for an afternoon of fun, food from The Corner Bakery Cafe at Princeton Marketfair, music from NJ 101.5, and a message of self-empowerment by registering today at www.njcts.org or call 908-575-7350.

Tess and Paige are on a roll!

NJCTS Youth Advocates Tess and Paige Kowalski have been on a roll lately. In addition to their presentation at Hamilton Primary School they also presented to the 6th grade class at Temple Emanu-El in Westfield, NJ this week. They educated approximately 50 students and 2 instructors about Tourette Syndrome and the associated disorders and shared their TS stories. Brava, ladies!

Tess and Paige educate Temple Emanu-El about Tourette Syndrome

Tess and Paige educate Temple Emanu-El about Tourette Syndrome and the associated disorders

Some of the factors that cause tics to increase

Some of the factors that cause tics to increase

Tess and Paige show a clip of "I Have Tourette's but Tourette's Doesn't Have Me"

Tess and Paige show a clip of “I Have Tourette’s but Tourette’s Doesn’t Have Me”

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Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige lead the group in an exercise to help them understand what it can be like living with TS.

Tess and Paige take questions from the class.

Tess and Paige take questions from the class.

NJCTS Youth Advocates educate students at Hamilton Primary School about TS

Earlier this week, NJCTS Youth Advocates Tess and Paige Kowalski were joined by Youth Advocate-in-training Cami Jimenez to present to the third graders at Hamilton Primary School in Bridgewater, NJ. More than 115 students learned about Tourette Syndrome, acceptance, and treating others with respect. After school that same day, Education Outreach Coordinator Gina Maria Jones presented to 50 faculty and staff members. Now, the Hamilton School community has the tools to help kids with TS thrive. Way to go, ladies!

Paige and Tess discuss what causes tics to become worse.

Paige and Tess discuss what causes tics to become worse.

Paige and Tess share their TS stories.

Paige and Tess share their TS stories.

Cami, Paige, and Tess take questions from the third graders.

Cami, Paige, and Tess take questions from the third graders.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

NJCTS Education Outreach Coordinator Gina Maria Jones looks on as the Youth Advocates answer questions.

 

NJCTS Youth Advocates present to nearly 900 students and teachers about Tourette Syndrome

Eric Baldwin, Sarah Baldwin, Rachel Flynn, Principal Robin Bazzel, and Anna Baldwin after their presentation on Tourette Syndrome and the Associated Disorders at Clearview Middle School.

Eric Baldwin, Sarah Baldwin, Rachel Flynn, Principal Robin Bazzel, and Anna Baldwin after their presentation on Tourette Syndrome and the Associated Disorders at Clearview Middle School.

Today, NJCTS Youth Advocates Anna, Sarah, and Eric Baldwin presented to the 7th and 8th graders at Clearview Middle School in Mullica Hill, NJ. Nearly 900 students and teachers learned about Tourette Syndrome, tolerance, and acceptance. The Baldwins were joined by their cousin Rachel who spoke about her TS for the first time! Here they are with Clearview Middle School Principal Robin Bazzel. We are so proud of the great work this family is up to, spreading understanding and awareness of TS throughout South Jersey. Bravo!