New Jersey students get lessons about Tourette from NJCTS Youth Advocates

NJ Center for Tourette Syndrome’s (NJCTS) Youth Advocates inspired, educated and spread awareness about Tourette Syndrome to a total of 1800 Cresskill, N.J., students from May 11 through May 15, as part of a weeklong TS awareness campaign in the district.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It is estimated that 1 in 100 children show signs of the disorder—as many as 20,000 school aged kids in New Jersey alone. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, and learning disabilities. Kids with TS are at increased risk for bullying and report feelings of isolation due to their condition. NJCTS Youth Advocates share their experiences with TS and spread messages of encouragement, acceptance, and self-advocacy.

Drew Friedrich spoke about TS to over 600 high school and 400 middle school students on May 11. Drew is 22 years old, a recent graduate of County College of Morris, has been a Youth Advocate since 2012, and was a coach at the first annual Tim Howard Leadership Academy last August.

“Drew did an amazing job connecting with the students and was comfortable in his skin, TS and all,” NJCTS Education Outreach Coordinator Gina Jones said. “He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion.” Continue reading

The final push

I have approximately a month of university left. A very, very scary prospect.

Before I forget – last semester I wrote a dissertation about the impact Tourette syndrome can have on educational attainment, which was interesting to research and write! I will share the results from this and the possible implications these can have soon, but I simply don’t have the time to write about it right now!

This semester is all about drama. I am directing a short play based on the book The Man Who Mistook His Wife for a Hat by Oliver Sacks which has been a really enjoyable experience (although it is testing my organisational skills!).

I am also going to be playing Dorothy in our university production of The Wizard of Oz. This is literally a dream come true for me. I never thought I would truly be able to tread the boards in a blue gingham dress with ruby slippers…but that’s what I will be doing in under three weeks time!

I feel lucky to be playing this role now, but a few years ago I would have thought it would be completely impossible for me to. But TS has not been a barrier to me achieving my goals and reaching my dreams! I have said things along these lines so many times before, and although I always tank I truly mean it, there is always a voice in my head to say the contrary. However, that little voice is now fading, and hopefully soon it will be gone for good!

Youth Co-Chair believes people won’t be sorry if they come to NJ Walks for TS at Princeton on March 29

NJ Walks for TS at Princeton is a 5K walk and family fun run on March 29. With a little more than 2 weeks to go, now is the best time to register and start getting in shape for spring.

“People won’t be sorry they came,” Youth Co-Chair Ethan Lederman said. “They’ll get exercise, meet some great people who have TS, and support this very important cause.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary movements or sounds known as tics. It often accompanied by other disorders including ADHD, anxiety, obsessive-compulsive disorder, depression and learning disabilities. As many as 1 in 100 school children show symptoms of TS, which means there are more than 20,000 New Jersey children living with the disorder.

“It can be really, really difficult to live with TS, because you usually don’t just have TS but TS and a bunch of other disorders,” Ethan said. “It helps if you’ve known someone with TS because it’s hard to describe how it can affect your life and you might be more sympathetic about reminding people not to stare or assume you’re just a ‘bad kid.’ ”

Ethan met Tess and Paige Kowalski through the family retreat weekend program of the New Jersey Center for Tourette Syndrome (NJCTS). Tess and Paige both have TS, and Tess is the teen responsible for bringing NJ Walks to the Princeton area.

“We’ve had a lot of the same struggles with TS,” Ethan said.

Ethan and the Kowalski’s also share an interest in educating the public about the disorder. Through the NJCTS Youth Advocate Program, the teens travel throughout the state meeting with political leaders, and delivering trainings to peers and healthcare professionals.

“This year, I got to speak to a state senator and Senator [Robert] Menendez’s staff on all the ways I’m very grateful to have NJCTS,” Ethan said. “TS isn’t something people talk about very much. I’m very proud to be part of the walk because I know it will be a good one. It is very important because it spreads awareness of TS, which not that many people really understand.”

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.

“NJ Walks for TS is a one-of-a-kind event for kids, by kids,” NJCTS Executive Director Faith W. Rice said. “Our Youth Co-Chair committee is working hard to spread the word and invite the public to join us in a celebration of awareness, advocacy and acceptance.”

With spring and warm weather around the corner, now is the time to prepare for one of the first 5Ks of the season, or simply a stroll with friends and family. Registration and donations can be made through www.njcts.org.

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.”

Legacy of Princeton teen is growing with 2nd annual awareness event

NJ Walks for TS at Princeton returns to Mercer County on Sunday, March 29. The 5K walk/family fun run will take place at Mercer County Park (East Picnic Area) in West Windsor. The second annual walk is growing, and teen Tess Kowalski of Plainsboro is at the center of what promises to be a powerful day.

NJ Walks for TS originated in 2010 in Morris County, and last year the 15-year-old and her father, Tim, brought NJ Walks to the Princeton area. This year, she leads an impressive Honorary Committee and Youth Co-Chairs.

This year’s Honorary Committee will be co-chaired by District 14 Senator Linda Greenstein and Assemblyman Daniel Benson. They are joined by District 7 Senator Dianne B. Allen and Assemblyman Herb Conaway, Jr., and Princeton Mayor Liz Lempert. This list is expected to grow.

“Their support means so much to NJCTS and the 20,000 kids with Tourette Syndrome in New Jersey,” NJCTS Executive Director Faith W. Rice said.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder remains misunderstood and misdiagnosed in the medical community. Proceeds from NJ Walks will benefit the Education Outreach Programs of NJCTS which train health-care professionals, educators and students across the state.

“Each dollar will make a difference in helping us improve diagnosis, treatment and life for kids with TS and their families,” Rice said. “We are also working in schools to spread an effective anti-bullying message of awareness and acceptance that benefits all students and training a new generation of youth leaders, but we can’t do it without support.”

“You don’t have to know about it [TS] to walk,” but should, said Tess, “because it feels good, it’s a nice thing to do.”

Just like the Honorary Committee, the NJ Walks for TS at Princeton Youth Co-Chairs are also spreading the word. In addition to Tess, the Youth Co-chairs include, Ethan Lederman of Howell, Hallie Hoffman of Belle Mead, and Anna Heicklen of Medford Lakes.

Register for the walk here, and donate for the walk here. For more information, please visit www.njcts.org.