New Jersey sub shop to host Tourette Syndrome fundraiser on November 5!

Youth Advocate Tommy Licato has done a lot of awareness work on behalf of the Tourette Syndrome community for years now — and he’s still in high school. Tommy’s incredible efforts on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) once again have yielded an opportunity for people to show their support for TS.

This time, Tommy has teamed up with Mr. Subs of South Plainfield to host a benefit fundraiser on Wednesday, November 5. From 4-8 p.m. that day, 15 percent of all proceeds at Mr. Subs will go toward the 5th annual NJ Walks for TS at Mendham, which supports the NJCTS School In-Service Program.

The School In-Service program educates students and teachers at schools in every corner of New Jersey about Tourette Syndrome, anti-bullying and self-advocacy. Tommy has been attending the walk for years and hopes that you will, too! But if you can’t, this fundraiser is a great way to take part. Or you can donate to the cause.

Mr. Subs is at 100 South Plainfield Avenue in South Plainfield. Hope to see you there on November 5!

Teens and specialists deliver critical Tourette Syndrome training in New Jersey

Physicians spend a lot of time in training, but when it comes to understanding the challenges of Tourette Syndrome, there’s a “gap”, according to Tolga Taneli, M.D. The psychiatrist specializes in the neurological disorder characterized by involuntary sounds or movements known as tics and he partners with the New Jersey Center for Tourette Syndrome (NJCTS) to educate healthcare professionals.

“Tourette Syndrome is diagnosed too late- from its first symptoms to diagnosis sometimes takes a decade or more,” said Dr. Taneli, “There is a training gap in physicians to make them able to recognize early symptoms.”

He emphases a “critical” need to train first-line physicians like family practitioners, pediatricians and internists- doctors who are more likely to encounter a patient before they seek the help of a specialist.

Because of its complex physical and cognitive manifestations, understanding Tourette Syndrome (TS) goes well beyond tics. Since 2011, NJCTS has delivered Patient-Centered Medical Education presentations to hospitals throughout New Jersey and beyond. The program consists of a specialist with TS expertise and teen advocates, living with TS, who are able to convey the emotional toll and communication challenges in a way that transcends clinical terms.

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NJCTS Youth Advocate Tommy Licato honored by Magic 98.3 FM

The New Jersey Center for Tourette Syndrome (NJCTS) is proud to congratulate Tommy Licato, recognized by WMGQ 98.3 as a “Kid who Makes Magic.”

The radio station honors local youth who are making a difference in their community. Licato, of South Plainfield, has demonstrated a sincere desire to use his experiences living with Tourette Syndrome (TS) to help others. As an New Jersey Center for Tourette Syndrome Youth Advocate, Tommy has been trained to lead peer in-services, present medical training alongside experts in the treatment of TS and mentor younger kids facing a new diagnosis.

In addition, Licato has spent countless hours fundraising and performing acts of advocacy to bring awareness and support to TS, a neurological disorder characterized by involuntary sounds or movements known as tics.

“I choose to educate people about TS because I don’t want people going through the bad experiences I did,” said Licato, who suffered bullying from classmates who didn’t understand his disorder, “Educating my peers changed my life for the better and I want to give another person with TS that same feeling.”

“Tommy has been a great part of what we do,” said NJCTS Executive Director Faith W. Rice, “We’re very proud of him and the good work he is doing on behalf of the 1 in 100 children in NJ living with this disorder.”

Licato was nominated by Nancy Toeltl, a lifelong family friend. He and the other children and teens selected as Magic 98.3′s “Kids who Make Magic” will receive a special gift and enjoy a night of fun at iPlay America in Freehold.

Being rejected by someone else with Tourette

I haven’t written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven’t felt secure enough to write about it until now. It’s been a full year though and I feel like I have enough distance from it now and strength to not let it hurt me anymore.

A year ago, I was a sophmore in college who had come back to school after my first summer as a counselor at Camp Twitch and Shout. I felt empowered because I had made a difference in children’s lives who had gone though what I had, and I felt accepted and loved after being welcomed into the camp twitch and shout family. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself.

I joined a new student group on campus and opened up to them about how I was involved in the Missouri Tourette’s Syndrome Association. I didn’t tell them that I had Tourette’s, but I ticced enough that it was probably obvious. After one of the meetings, another girl in the club who was a year older than me came up to me and told me that she was a Tourette’s Syndrome Youth Ambassador and when I asked how she got involved, she told me that she had Tourette’s. I was so excited!

I told her I have TS, too, and that I wished I could have been a youth ambassador but I was too old when I found out about the program. Even though I recognized her as one of the people who interviewed during sorority recruitment for a sorority that I was rejected from and even though the people during recruitment from that particular sorority were not very kind to me, I was still excited.

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about camp and after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong?

Now that I had opened my mouth, did she think for some reason that I was just a really lame person who she didn’t want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as “cool” as she is.

Later on, I decided to send her a message.

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One of our researchers talks about life with her younger sister who lives with TS

This blog is written by Diana Beljaars a PhD researcher from Cardiff University in Wales. Diana is originally from Holland and speaks Dutch and English. In this blog article she writes poignantly about her relationship with her sister who has Tourettes Syndrome.

My Touretty sister and me

Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then, things changed. She started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that finally could be named Tourette syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.

We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.

Diana’s sister has been blogging for Teens4TS for more than 2 years now. Read all about her adventures here!