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

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

TommyL

When I was twelve years old, I was sitting in the lunch room, and in an instant, the school went into lockdown. For most students this is not a serious issue. They stay quiet and out of sight. For me, lockdowns are a challenge because I have Tourette Syndrome (TS), a disorder characterized by involuntary movements and sounds called tics. While the rest of the cafeteria was quiet, I couldn’t help but involuntarily yelp and twitch my neck. It felt as though the eyes of the world were glaring at me with their ears wide open to the noises I was making. I was not expecting the comment that would hurt worse than the constant staring and whispers from that school year. This unlikely offender was a quiet, but kind person who sat in front of me and asked, “Why are you doing that? What’s wrong with you? Someone should put you in a cage or something!” It was at that moment that I knew that I had to speak out about Tourette Syndrome and advocate for myself.

About a month later, a person from the New Jersey Center for Tourette Syndrome and
Associated Disorders, Inc., came to my school and educated my peers about TS. During both presentations I stood up and stated that I had TS and I deserved respect. Through speaking out at the presentation, I became more confident and unafraid to say I have TS. In a span of six months, I went from being bullied, and afraid to feeling confident and free to be me. I learned through that entire experience that I wanted to be the one up in front of a crowd helping kids with TS come out of their shells. I later became a National Youth Ambassador and Patient Educator for Tourette Syndrome. I continued on to speak at schools, hospitals, and universities. My most rewarding experiences were when I spoke to children with TS and their peers.

Out of the adversity I have faced, I have learned to be resilient. I have developed thick
skin that has made every comment and stare bounce right off. I have learned to get back up after each defeat and push through to every victory. Throughout every tough event in life, I have turned to music to get through them. It is a known phenomenon that people with TS don’t tic while performing. Music is the reason that I wake up at 5:00 every morning to be at my before school choir class. Throughout my life I have had two passions: music and Tourette Syndrome. It is my hope to combine them into a career in music therapy. I hope to do research to figure out the correlation between the reprieve from tics and music in Tourette Syndrome patients. Hopefully, one day I will come up with a viable way to treat people with TS through music.

Through my past experiences I have learned to see each challenge as a gift. If I didn’t go through what I have in life, I wouldn’t be me or have done half the things I’ve accomplished over the years. My past experiences are what made me who I am today, and I wouldn’t change any part of them. They are what gave me the drive to be successful and create a positive change in the world. I will meet each new challenge and goal with the same intensity. I will continue to be resilient, because no matter what I do in life there will be staring, comments, and people who say I won’t succeed. If there is one thing I have learned, it is that people say many things, but they aren’t always right. Someday I will be living proof that nothing, and no one, will stop me from accomplishing my goals in life.

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.

2017 NJCTS Youth Scholarship Award Essay: “My Tourette’s, My Advantage”

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

Tim Howard, an amazing athlete playing Premier Soccer and two-time representative in the World cup. He defines himself as a player who happens to have Tourette. We have this in common. No, I am not a professional soccer player, but I am a successful student, passionate person, and someone who has compassion for everyone beyond belief, who happens to have Tourette. Many view my Tourette as a disability. I, on the other hand strongly believe it is to my advantage. The person who I see in the mirror everyday is not the once shy kid who was afraid to speak out. I am someone who is not afraid to advocate or my condition, someone who smiles at the sight of a challenge, someone whose ambition is so high that whatever my life has to throw at me I can easily pick myself up, dust off my shoulder and trek forward. I already have one challenge completed: not let my Tourette control me.

I was diagnosed with TS at seven years old, and Howard was one of many who my dad told me about who was very successful in various fields of life that had Tourette. It was great to have these examples when I was forced to resolve awkward questions from peers and the occasional bullying in school. Even teachers would make comments about the unusual things I would do in the classroom. I was very shy about my tics and never spoke out to advocate for my condition. As I look back to who I was then, and who I became today I realized that the NJCTS Tim Howard Leadership Academy changed me. Those three weekends showed me that I don’t have to hide, and I should be proud of who I am.

During my first year at the Academy, my confidence boosted tremendously. I was able to talk about my tics in a light-hearted fashion and I also started to feel a sense of pride about having Tourette. I no longer view Tourette as a disability because it makes me who I am today. Throughout the academy many professionals in the medical field helped me to improve myself with the condition I have. With this new information, I was able to teach important lessons and advocate for others at the end of my third year. The coaches and others who attended the academy made me a better person today by teaching me how to advocate for myself. They shared stories with me in meetings which allowed me to share my story, thus shaping me into the person who is not afraid to speak out and advocate for our “advantage”. The Tim Howard Leadership Academy is near and dear to my heart. This academy was the first time I was able to express my true self in front of newly made friends, and not to be embarrassed about my condition. It was a great opportunity to let out my inner “Noah” without the fear of rejection and abnormalcy to people who go through similar situations in their life.

I truly believe that my Tourette has guided me to become a person who not only could defy expectations but to accomplish triumphs I never expected to complete. Who would have thought a kid with a so-called “disability” could get into every school they applied to and have so many options to better their future. I would encourage people with Tourette or other “advantages” to speak out, to let the world know that we can do anything we set our mind to. Yes it might be a struggle, but that just means we will work 10 times harder than an average person. Whatever my future is – a doctor, a lawyer, a teacher – I know that with my little buddy by my side (Tourette) we can defy the odds and do anything. Now I might not be the greatest athlete or the most brilliant student but I am who I am. The condition called Tourette will be a part of me for my entire life but it will not be a limitation. I cannot control how people view me. can only control how I view myself.

 

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.

BRTV Morning Show interviews Girl Scouts about their efforts to raise awareness of TS

Ilina, Jaclyn, and Cami from Girl Scout Troop 60808 were interviewed by the Bridgewater Raritan High School’s morning news show about their effort to raise awareness for Tourette Syndrome. They want everyone to wear blue on Friday in recognition of Tourette Syndrome Awareness Day in New Jersey on June 4th. Way to go, girls!

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.

Watch NJCTS Youth Advocate Tess Kowalski’s interview on ABC’ NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! If you missed the segment that aired on Sunday you can watch it here. Bravo!

Watch for One of The GreaTS on ABC’s NJ Viewpoint

We are so proud of NJCTS Youth Advocate Tess Kowalski and Tim Kowalski who were recently interviewed by ABC’s Ken Rosato for NJ Viewpoint. Thank you for representing NJCTS and for all you continue to do to raise Tourette Syndrome awareness! Tune in to ABC on May 29 at 5:30am. And in case you miss it, we’ll be sharing the clip here too. #StandWithTheGreaTS

ABC Host Ken Rosato interviewed NJCTS Youth Advocate Tess Kowalski and Tim Kowalski for an upcoming episode of NJ Viewpoint.

ABC Host Ken Rosato interviewed NJCTS Youth Advocate Tess Kowalski and Tim Kowalski for an upcoming episode of NJ Viewpoint.

ABC Host Ken Rosato sits down with Tim and Tess Kowalski and John Miller of the Tourette Association of America to discuss TS advocacy in the region.

ABC Host Ken Rosato sits down with Tim and Tess Kowalski of NJCTS and John Miller of the Tourette Association of America to discuss TS advocacy in the region.

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