Cresskill students get lessons about Tourette Syndrome 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. He showed students that anything is possible and being different can be empowering. The students asked wonderful questions and started great discussion. Continue reading

Youth Advocates continue to spread the word about Tourette Syndrome across New Jersey!

Congratulations to NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Mike Hayden, who spoke with confidence and elegance about Tourette Syndrome to more than 200 third-, fourth-, and fifth-graders at the Bryan Elementary School in Cresskill, N.J., this afternoon.

I joined Mike for this incredible presentation, along with the school counselor, Superintendent Michael Burke, and our generous NJCTS supporter, Caryn Aronson, who organized this week’s presentations.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350. You can also read more about presentations like this on our Facebook page. “Like” us today!

“I’m gonna have more friends now” because of Youth Advocate presentation in New Jersey

Last week, my daughters Anna and Sarah gave a TS Youth Ambassador Presentation.  Like all of the ones they have given before, I sat in the audience and watched the faces of the kids as they learn about TS.  They have given well over 20 presentations, and each one has been a success.

The girls talk about TS, what it’s like to live with it and how important it is to treat people with respect. Then, they do a quick activity to let the kids have a chance to see how hard it is to do work when you have TS. (We love watching the teachers try and do this also!) At the end, there are always questions from the students. This is my favorite part because this is when I can watch the stereotypes get washed away.

The questions asked show that the kids are really interested and want to learn more about it. My children have not been bullied about their TS.  Mainly, I believe, because of the fact that they take the time to educate their peers about TS.

This presentation was given because there is a child in the school with TS who has been having a hard time.  The kids get to ask the girls questions about TS and not worry about hurting their feelings or seeming rude.  This opens up the dialogue for the kids in school.  All of the children are given a “TS Fact Sheet” to take home so that the parents can continue the discussion.

Anna and Sarah know that they are doing good things by speaking about this, but yesterday, they were able to see it with their own eyes.  After the presentation, the child for which it was given came up and met the girls.  After talking with them for a couple of minutes, he said, “I think I’m gonna have more friends now because of you”.  His mother sent me a picture of his daily journal:

NJCTS discusses Tourette Syndrome at Centenary College Abilities Day

HACKETTSTOWN — Spreading awareness of Tourette Syndrome and providing world-class resources is at the heart of the New Jersey Center for Tourette Syndrome’s (NJCTS) mission. This month, NJCTS took part in Abilities Day at Centenary College in Hackettstown.

Myself and volunteer Maddie Pucciarello discussed the programs and services of NJCTS with Centenary students, local teachers and school administrators.

Abilities Day was a wonderful opportunity for us to show students planning to become educators how education outreach provided by NJCTS can help them in their future careers to improve the lives of young students.

During the 150minute presentation, we shared information about NJCTS. Pucciarello, a graduate student in public health at Rutgers University, discussed her experience with Tourette Syndrome and how she became involved with the organization.

Tourette Syndrome is a neurological disorder characterized by involuntary movements or sounds known as tics. As many as 1 in 100 school-aged children show signs of TS, which is frequently accompanied by ADHD, obsessive-compulsive disorder, depression, anxiety or learning disabilities.

We are looking forward to returning to Centenary to deliver an in-service presentation for education students on the topic of Tourette Syndrome and its associated disorders.

For more information about Tourette Syndrome the Center and its Education Outreach Program, please visit www.njcts.org or call 908-575-7350.

Graduate students at Montclair State get tutorial on Tourette

On March 23, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) held a Graduate Student “Faculty” In-Serivce presentation at Montclair State University. Presented by Dr. Michelle Miller, more than 75 attendees — which included graduate students from the School of Psychology — were given a comprehensive look at Tourette Syndrome, ways to treat it, and ways to accommodate it in and out of the classroom.

The attendees described the presentation as “very informative & comprehensive” and an “excellent presentation with well-displayed, well-paced information.” To schedule one of these presentations at your location, please contact me at 908-575-7350.

Gina Maria Jones, M.Ed.

Education Outreach Coordinator

NJ Center for Tourette Syndrome & Associated Disorders, Inc.

908-575-7350

www.njcts.org

Rutgers graduate students learn about Tourette Syndrome for 12th straight year

Earlier this month, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) presented to incoming graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology (GSAPP) for the 12th straight year!

Led by Dr. Robert Zambrano and NJCTS Youth Advocate Tommy Licato, this required lecture is an important part of NJCTS’ relationship with Rutgers and a starting point for students who might be interested in our TS practicum program. The bottom line? Every doctoral candidate at Rutgers University for the past 12 years has heard a lecture from a doctor, a psychologist, a family with Tourette Syndrome and NJCTS!

NJCTS helps North Jersey residents at Self-Sufficiency Health Fair

On March 26, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) had a table at the Project Self-Sufficiency Health Fair in Newton. Coordinated by Project Self-Sufficiency Development Officer Whitney Mayer, the health fair attracted more than 75 people from that North Jersey tri-county area.

Community members were invited to attend this health fair to get more information about different organizations and the support(s) they offer. Some people asked questions but mostly took our peanut brochures and continued through the fair. Many people mentioned they had not heard of us before and were very glad we came.

To schedule an NJCTS table at your location, please contact me at 908-575-7350.

Gina Maria Jones, M.Ed.

Education Outreach Coordinator

NJ Center for Tourette Syndrome & Associated Disorders, Inc.

908-575-7350

www.njcts.org

NJCTS Youth Advocates take over Awareness Fair in Old Bridge

On March 31, the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) had a table for the Awareness Fair at Alan B. Shepard Elementary School in Old Bridge. Coordinated by School Counselor Jean Czarkowski, the fair was attended by more than 250 kids and teachers in grade K-5. They took turns rotating through the gym to see different exhibits/vendors and learn about different “abilities.”

I had the privilege of manning the NJCTS table at the fair, along with NJCTS Youth Advocates Ally Abad and Tommy Licato. The kids asked wonderful questions and seemed very compassionate and excited to learn!

To schedule an NJCTS table at your location, please contact me at 908-575-7350.

Gina Maria Jones, M.Ed.

Education Outreach Coordinator

NJ Center for Tourette Syndrome & Associated Disorders, Inc.

908-575-7350

www.njcts.org

New Jersey 7th-graders learn a lot from Youth Advocate Presentation

My daughters Sarah and Anna did a New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) Youth Advocate Presentation for more than 150 7th-graders last week at Galloway Township Middle School, and to put it bluntly…they killed it.

The presentation went great.  The audience really learned something and thought this was a great presentation to talk about. The kids were really into it and asked a lot of questions.  The Vice Principal, teachers and guidance counselor loved it. They said they want the girls to come back next year for the incoming 7th grade. Here are some pictures:

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 I 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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