Academy Empowers a New Class of Teen Leaders

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

NJCTS Tim Howard Leadership Academy Class of 2015 in their Leadership Academy edition GreaTS shirts

The NJCTS Tim Howard Leadership Academy honors a new set of leaders in the Class of 2015.  Each of the 35 participants took part in an intensive four-day training promoting self-empowerment, self-leadership, and resilience—all important skills to succeed while living with Tourette Syndrome.

Tourette Syndrome (TS) is a neurological disorder characterized by uncontrollable movements known as tics. As many as 1 in 100 people show signs of TS which is frequently accompanied by other disorders including ADHD, OCD, and learning disabilities.

Created in 2014 in partnership with U.S. Men’s Soccer goalkeeper and TS advocate Tim Howard, the Academy is the only leadership program for teens diagnosed with Tourette Syndrome in the nation. During the opening ceremony, Howard’s inspiring video message welcoming the Class of 2015 encouraged them to “learn as much as you can from the expert team we have assembled and enjoy the time together with others who will guide and inspire you.”

Our partners at creative agency BNO introduced The GreaTS movement during opening ceremonies. This powerful movement aims to spread awareness of TS around the world and inspire individuals with TS to come out from behind the shadows, which is also a primary goal of the Leadership Academy. BNO premiered a video about The GreaTS featuring Tim Howard and the room erupted with applause.

The Academy took place at Rutgers University from August 6-9 and emphasized the biological, psychological, and social components surrounding a TS diagnosis. Leading TS experts from area Universities including Rutgers, Yale, and the University of Pennsylvania led presentations and workshops throughout the program. Participants had the opportunity to learn from the neurologists, geneticists, psychologists, and social workers and were able to ask their most burning questions about their diagnoses.

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

Dr. Jay Tischfield and Dr. Gary Heiman led a tour through the NJCTS Cell & DNA Sharing Repository

“We want them to leave as experts, ready to face a public who is misinformed about TS,” said Leadership Academy Director Melissa Fowler. “They have a unique opportunity to learn more about their diagnosis from our expert presenters.”

Each of the 35 participants—who hailed from New Jersey, New York, Pennsylvania, Illinois, Maryland, Indiana, Washington, Virginia, and California—contributed thoughtful questions and were eager to share life-skills tips with one another. They were assigned to teams led by coaches—successful young adults with TS.

In smaller “Team Talk” sessions, personal, powerful, and emotional discussions continued about the four pillars and developing the goals participants set for themselves as a final project. The coaches were asked about driving, getting accommodations in college, how TS affects them at work, and dating.

“It means so much to teens to engage with coaches and presenters who are the ideal role models,” said NJCTS Executive Director Faith W. Rice. “Learning from others who are living successful lives with a TS diagnosis is invaluable.”

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

The NJCTS Tim Howard Leadership Academy Class of 2015 built friendships to last a lifetime

Over the course of the Academy, participants spoke of resilience and leadership and defined personal goals for themselves. With the lessons and skills they gained, this class will step up to be the voice of awareness in their own communities.

The 2016 NJCTS Tim Howard Leadership Academy dates will be announced soon. For more information visit www.njcts.org/teamup.

Young Millburn actor with Tourette’s Syndrome prepares for college

Alec Wolf finds freedom when he is on stage and he doesn’t let his TS hold him back. We are delighted to have Alec chosen as a finalist of our Youth Scholarship Award and we look forward to seeing his continued success, in school and on stage!

PHOTO COURTESY OF CINDI WOLF Alec Wolf, as Dr. Fredrick Frankenstein, sings on his peers' shoulders in MHS Limelight Players' production of "Young Frankenstein," in November 2014.

PHOTO COURTESY OF CINDI WOLF
Alec Wolf, as Dr. Fredrick Frankenstein, sings on his peers’ shoulders in MHS Limelight Players’ production of “Young Frankenstein,” in November 2014.

Alec was recently profiled in The Item of Millburn and Short Hills:

The only time Alec Wolf says he feels free from Tourette’s Syndrome is when he’s on stage.

Wolf, 18, clears his throat and jerks his body uncontrollably several times a day, but he says the tics are part and parcel of the character he plays every day in real life: Alec Wolf.

In the theater, however, they’re nowhere to be found.

“I can have a million personalities when I’m acting, and it’s not the one with Tourette’s,” said Wolf, who graduated from Millburn High School last month. He was awarded the New Jersey Center for Tourette’s Syndrome and Associated Disorders (NJCTS) 2015 Youth Scholarship after submitting his essay, “The Things that Make Me Tic (Pun Intended).”

Continue reading…

In case you missed his essay, you can read it here.

 

An empowering, invigorating, life-changing experience

In 2014, NJCTS introduced the inaugural Tim Howard Leadership Academy—a four-day intensive program for high-school-age teens with Tourette Syndrome, held in August at Rutgers University. The experience was life-changing for the participants and we are thrilled to be able to bring it back this year. Recently, NJCTS Tim Howard Leadership Academy Alum Hallie Hoffman wrote about the profound impact the Academy had on her. 

Imagine you are a teenager, and you have come to a place where there are many other kids your age. Many of them share similar interests as you, and all of you have come here to learn and have fun. You will meet adults who are proof that you will do fine in life. You will learn about many different aspects of yourself—physically, emotionally, and socially—and you will feel comfortable sharing these because no one is judging you here. You will talk and laugh with kids whom you have become closer with in only a few days than people you have known for years. You all came here because you share Tourette Syndrome, but what strikes you the most about the other kids is everything except that. You see them as athletes, musicians, actors, writers, dancers, and now friends. None of them are defined by their tics, and you know that they don’t define you by your tics either. Most importantly, everyone gets it. They understand the sadness, anger, frustration, shame, and fear. They know what it is like to feel alone, to feel different. But in this moment, none of that exists anymore. For the first time in many years, possibly even your entire life, you know that you are exactly where you are supposed to be.

This is the NJCTS Tim Howard Leadership Academy. Last summer, I had the incredible opportunity to be a part of the inaugural group, and it was a life-changing experience. Prior to the Academy, I had never met more than a few kids with Tourette Syndrome, and I had never met an adult with it. At the Academy, I was able to clearly see that I am not alone. Talking with such confident and accomplished adults who also have TS gave me the confirmation that I needed to know that TS will not stop me from getting where I want to be in life.

It was not until I went to the Academy that I realized how much I had unconsciously suppressed my tics. Knowing that my tics didn’t require an explanation and that no one would feel uncomfortable by them gave me the freedom I needed to let them out. In doing so, I learned just how exhausting it had been to always attempt to filter my tics. Most incredibly, my tics quickly lessened because there was no added stress or effort to suppress them.

I remember the one night that a group of us huddled together around the piano, joking about how talented people with Tourette’s are. After singing many different pop songs and show tunes, we finally sang “Let It Go” from Frozen. As soon as we had finished, all of us realized at the same time that this was the perfect theme song for people with TS. The words “Let it go, can’t hold it back anymore,” and “Let the storm rage on, the cold never bothered me any way,” were a perfect narration for our lives.

Those three days were some of the best of my life. I met so many incredible kids and coaches, all of whom have inspired me. Learning about other people’s lives with Tourette’s helps me understand that I am never alone, and that there are so many others who understand my struggles. I still use everything I learned from the Academy, including everything from how our brains work differently, to study skills to help us in school, and even ways in which to relax that can lessen tics. One of my favorite activities, hearing from a panel of adults with TS, was an incredibly honest and enlightening experience. All of the participants had so many questions that had been on our minds, such as how TS can affect us in college, jobs, and relationships. The coaches answers were amazingly truthful in a way that brought us all together, and they reassured us that while there are struggles ahead, everything will be okay.

I am beyond excited to have the opportunity to return to the Academy this summer. I cannot wait to see the friends I made last summer, and I look forward to making many new friends as well. What is so amazing about the Academy is that it is something that never gets old; even though I went last year, there is always so much more to take from this experience. The Academy is a place where kids with Tourette’s can come together and grow, no matter where they are at in their journey when they first arrive. I know that this year I will learn a completely different set of lessons and skills, because I am at a different place in my life than I was last year. It is with this flexibility and focus on both individuality and the community that the Academy is able to offer so much to every person who comes.

I truly wish that all kids with Tourette’s could attend the Academy. It was such an empowering, invigorating, life-changing experience for me. Because of the skills and confidence that the Academy gave me, I was able to really start to speak out this year and be comfortable in who I am. A famous soccer goalie says to kids with Tourette’s, “You can do anything any one else can do.” This is what the NJCTS Tim Howard Leadership Academy has taught participants such as myself, and I look forward to this year when it will continue to spread this message of acceptance, self-esteem, and empowerment.

2015 NJCTS Youth Scholarship Award Essay: “The Things That Make Me Tic (Pun Intended)”

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!

AlecW

AlecW

It is about 11:45 on a Wednesday morning, My friends and I are leaving Panera, where we just had lunch. As we are on our way out, my head jerks against my shoulder, and returns to its normal spot. This is common for me. It is just another one of my tics, But, as I look up, I see a man staring at me. His eyes are wide, and he makes a wide path around me, I stick out my chin and walk away with a smile. One man’s reaction to my Tourette Syndrome means nothing to me, but how I have grown to overcome it means everything. I have Tourette’s, and I tic, and sometimes I cannot control it. For me, however, it is not a barrier. It is a motivation to work harder. Like most people who have Tourette’s, I do not involuntarily swear (less than ten percent actually do), but I am proud to represent everyone no matter what form of the condition they have, I try to be a model of “Nothing is impossible to overcome!” When I see people look up to me, it makes me feel good to stand for what I believe in.

Last fall I auditioned for my high school musical, Young Frankenstein, In the past, I had been cast in mostly ensemble or minor roles, I assumed it was because the director thought my Tourette’s would be a distraction to the audience. I did not care that I was probably going to be given the same sized role as I had in prior years, I sang my heart out and acted to the point where I left my audition exhausted. Two days later, I was cast as the lead, Dr. Fronkensteen. My Tourette Syndrome was no longer an obstacle in my eyes. I have learned that when I am on stage, my tics disappear. I am a completely different person. I worked as hard as I could to get to this point, proving I can be an inspiration to others. When I work my heart out, I can beat any obstacle, especially if it is something preventing me from doing what I love.

In Spamalot a musical I performed in last summer, there is a song called “Find Your Grail.” It is about finding what a person desires to make him happy. I have found my grail: theatre. It is the aspect of my life that has had the most major impact on my development as a young adult. Theatre has taught me the importance of leadership, confidence, and commitment, and aided in developing my creativity and communication skills, It has helped me grow into my shoes by teaching me that being who I want to be is what matters; no one else’s opinion should affect how I think of myself.

Finding my grail has completely changed the way I look at the world. One moment I thought I knew myself, and the next, I realized that my grail was not at all what I thought it was, Maybe my grail is being who I want to be, Maybe it is truly being myself, knowing that every day, my Tourette’s is not a disability, but a motivation to work harder. I am proud to say I have Tourette Syndrome, and I am proud to call myself an individual. I am who I want to be. I am Alec.

2015 NJCTS Youth Scholarship Award Essay: “Pushing Through”

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!

Meghan Ward photo

I was diagnosed with Tourette Syndrome at seven. At the time, my brother was the one who had been diagnosed with Tourette, and he was having a difficult time coping with it. While we were following up with the doctor, my mother asked what my chances were of being diagnosed as well. The doctor said that, while I was sitting in my mother’s lap, “your daughter is ticcing right now”. Due the experience I had with my brother, I understood what was being said and did not have a bad reaction to being told I had Tourette. I, in turn, asked “if I was like Justin” and that I was happy Justin wasn’t alone. Dealing with my Tourette has been easier for me as I am on the more mild side of the spectrum.

In order to understand what my brother and I were dealing with, my family became more involved in the TS community. We were able to learn more about the disorder and about how it passes down genetically from the father. Being diagnosed with Tourette has brought closer together and we became more involved with the TS community. We would go to a camp that had other kids, just like us, who could learn more about each other and how TS had affected us differently. By going to this camp, it helped me realize that I wasn’t the only one who was different and that even celebrities could have disabilities and overcome the obstacles. The kids at the camp were taught to recognize our tics and became more aware of them in others.

Tourette has affected my school life both academically and socially. I’ve always had trouble concentrating in school. Knowing I have Tourette has helped me understand why I do the things I do and why I have difficulty staying still in my seat which made me focus on myself rather than the teachers. It has also made me more aware as well as defensive towards stereotypical remarks. I believe now that i am less likely to judge people by their mannerisms as I had been before.

A contribution my family was able to make to the TS community was being featured on a news program regarding Tourette Syndrome. By doing this news segment, we were able to help make people aware of the disorder, how it affects the child diagnosed, and the child’s family. This made me hopeful that people would be able to put a face to the syndrome.

Overall, being diagnosed with Tourette Syndrome has had positive and negative effects on my life. It has made me the person I am today; more aware of others disabilities and helping others who are in the same situation as I am. I have even volunteered on the First Aid Squad for my town. Tourette Syndrome is a part of my life and it makes me who I am.