New Jersey teen wants to see more acceptance and education

NJ+Walks+for+TS+LOGO2Hallie Hoffman wants you to know that people with Tourette Syndrome (TS) are more than just their diagnosis.

“TS is just one group we belong to, just as people may identify themselves with other groups such as athletes or musicians,” she said, “TS is not a disorder that puts people at social odds with others, as it is sometimes portrayed in the media.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school-age children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder. Hallie is one of them, and she joins other teens as Youth Co-Chairs for this year’s NJ Walks for TS at Princeton.

NJ Walks for TS is a 5K walk and family fun run at Mercer County Park on March 29 by the New Jersey Center for Tourette Syndrome (NJCTS). The event raises awareness while breaking the stigma attached to the disorder.

“Our mission is one of acceptance and education, and we need the public’s help to accomplish this.” said Hallie.

To help is to attend the walk or donate. Proceeds from NJ Walks for TS will benefit the Education Outreach Programs of NJCTS, which include youth leadership development, in-services for educators and students, hospital grand rounds presentations for healthcare professionals and scholarships for students with TS.

Education is a very powerful tool in fighting the stigma attached to this disorder, and Hallie knows this well. Her interest in learning more about TS led her to invite a speaker to her school to talk about the disorder- before she even had a diagnosis.

“Even though I knew I had TS, my parents were afraid that if I got the diagnosis, I would be bullied by my peers,” Hallie said. ” It was my interest in educating others about TS that helped me confront my parents about getting a diagnosis, and shortly after I became trained as a Youth Advocate for NJCTS.”

Youth Advocates travel to schools and hospitals to train students and healthcare professionals about TS. Last summer, Hallie was in the first class of the Tim Howard NJCTS Leadership Academy.

“Young people with TS are a force, they are motivated and dedicated to helping their peers living with TS and other neurological disorders,” NJCTS Executive Director Faith W. Rice said. “NJ Walks for TS was founded for kids, by kids- and the work they are able to accomplish will help a new generation.”

Hallie is counting on the public to make this year’s event bigger than ever.

“Not only is [NJ Walks for TS] really fun, but it’s a great way to be a part of a larger goal,” she said. “A 5K may not seem that important, but the support shown and the money raised make a huge difference.”

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.

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Applications for 2015 Tim Howard NJCTS Leadership Academy accepted through January 30!

The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity and will be accepted through Friday, January 30.

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially.

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Tim Howard’s book “The Keeper” is now available!

Here’s are two excerpts from Tim Howard’s new book, “The Keeper,” which came out yesterday, December 9. The first is from the chapter called “Like Coming Home” and talks about arriving at Everton Football Club:

“At the start of the ’06-’07 season, I step out onto the field at Goodison Park, where Everton plays. It’s the derby with Liverpool, the hometown rivals. I love the feel of the place — the rickety old stadium, as historic and un-corporate as they come. I love the fans, their pure, passionate, and deafeningly loud dedication to the team. I love the fact that the team has taken a chance on me, that they’ve pulled me out of a dark place. Standing there on the field, about to play Liverpool, all I want to do is play my heart out. I’ve come home.”

This one is from an early chapter called “Goals That Matter”, when Howard first learned that he had Tourette Syndrome & OCD:

“I struggle in school — I’m hyperactive, and I have trouble sitting in my seat. My mother, aware of my desperate need to move, to run, signs me up for soccer by age 6. I fall in love with the game. I love the fluid back-and-forth, the challenge of playing a game using only one’s feet. By age 11, I begin to show strange behaviors; I touch things compulsively. I become obsessed with picking up random items for no logical reason. Then I develop tics — twitches and jerks that I can’t control no matter how hard I try. Mom and I learn that I have Tourette Syndrome (TS) and Obsessive Compulsive Disorder (OCD). The doctor tells my mom that often, these conditions have a “flip side,” and he’s seen cases where kids have special gifts. It is only on the sports fields that I feel relief, so I focus on my athletic skills exclusively….obsessively.”

You can read much more about Tim Howard, who is a Board Member of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) here:

Advice & learning from the Tim Howard NJCTS Leadership Academy

Hi there, my name is Adam and I have Tourette Syndrome. I am a National Tourette Syndrome Youth Ambassador. I know this is a little late, but I want to talk about my experience at the Tim Howard NJCTS Leadership Academy, which took place August 1-3 at Rutgers University. My favorite part of the academy was the amazing feeling I had knowing that the people there knew what I was going through. It’s called empathy. They could feel what I was feeling and I could feel for them, too.

I learned a lot about TS when I was there. I learned about what goes on in the brain when someone tics. I learned about experiences that the coaches have had throughout their life and got to ask them questions about how to handle my experiences. I learned how to organize myself effectively and efficiently during the executive function workshop. I learned about the social aspects of TS, like the benefits of being honest and open when dealing with friends and other relationships.

Lastly, I want to give some advice to the readers of this post. My advice to you, the reader, is to find that thing that you’re so so passionate about. Whether it be soccer or baseball, singing or theater, cooking or politics, doing that thing that you’re passionate about will make you so happy, so proud and confident in yourself, that you never want it to end. Mine is Tourette Syndrome advocacy.

Thank you for reading this, and I hope you find your passion.

Tim Howard NJCTS Leadership Academy was amazing!

Two weekends ago, my sister and I went to the Tim Howard NJCTS Leadership Academy. It was such an amazing experience. I made so many new friends and I learned so much! We had the opportunity to hear from medical professionals and learn more about our disorder. We worked hard while we were there, but we had so much fun. We immediately bonded with everyone there, and I would highly encourage others to go!

Things Tim Howard Could Save … the world?

Today I was standing in line to get lunch and was doing a bunch of vocal tics and the person standing in front of me wasn’t reacting a whole bunch, so I thought to myself, “Maybe she knows what Tourette’s is because of Tim Howard. Maybe one day everyone will know what Tourette’s is and people will stop staring at me in public when i’m ticcing.” What a nice thought it was.

Also Tim Howard is becoming an internet sensation!!! #ThingsTimHowardCouldSave is trending right now on Twitter and if he could save your parents divorce and the save the citizens from being eaten by Jaws, maybe just maybe he could save my sanity one of these days!!! Lol, OK maybe i’m being a bit dramatic, stares in public don’t make me loose my sanity completely, but I sure would feel a lot better if people stared less often!