2016 NJCTS Youth Scholarship Award Essay: “My Life with Tourette Syndrome”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

Having Tourette Syndrome has impacted my life in so many ways. It has influenced the choices I’ve made and the people I’ve met. My experience with Tourette’s has helped shape me into the person I am today. I’m not ashamed of my Tourette’s (in fact, I’m almost proud of it), and I feel that it has helped make me a better person.

I was diagnosed with Tourette Syndrome in the fifth grade, at the age of ten. I’ve suffered from vocal and motor tics since I was in the second grade. Neither I nor my parents understood what caused them, and my teachers and other students would often become frustrated with me. Even my own family would grow tired of my constant noise-making and movements. I didn’t know what was wrong with me. Eventually, someone told my mother to look into Tourette Syndrome. I was finally diagnosed with Tourette’s in the fall of 2008.

Instead of letting my Tourette’s drag me down, I used my diagnosis as motivation to better myself. I began taking karate lessons later the same year after my diagnosis. In eighth grade, I decided to play football. It was a rough season, but it ended up being one of the best decisions I’ve ever made. Football gave me an outlet in which to channel my frustration. I was never a great athlete, but I worked hard, so by my senior year, I had earned a starting varsity spot on my high school’s football team.

In my junior year, I participated in a research study for a new Tourette’s medication. This was done at Overlook Hospital, in Summit, New Jersey, under the supervision of Dr. Roger Kurlan. The medicine worked well for me. I greatly enjoyed the opportunity to be able to possibly help others with Tourette’s.

In conclusion, Tourette Syndrome is a part of my life. My experiences with Tourette’s have greatly contributed to the person that I am today. I’m not ashamed of my Tourette’s, instead I embrace it as part of who I am. I have never let my Tourette’s drag me down, and I hope to inspire others with Tourette’s to embrace it and use it as motivation to better themselves as well.

Research project: Looking for participants to count their tics

My name is Rebecca and I am a 7th grade student at St. Gregory the Great Academy in Hamilton, New Jersey. Every year, I am required to submit a science experiment to the Mercer County Science and Engineering Fair. This year, I have decided to conduct my research on Tourette Syndrome. I have been diagnosed with Tourette Syndrome since I was nine years old and I have a high level of interest in understanding more about the disorder. Many organizations, including: NJCTS, Camp Twitch and Shout, the Rutgers University Tourette Syndrome Clinic and my private doctors and psychologists, have been a tremendous help to me and my family in coping with my Tourette Syndrome. I have learned to accept my tics and to be proud of myself and my accomplishments. I am so much more than a kid with Tourette Syndrome. I am also a great student, a competitive swimmer, an avid reader and a lot of fun to be around!

Right now, I am asking for help with my research on Tourette Syndrome. I am looking for participants with Tourette Syndrome to count their tics for me. My hypothesis is that students with Tourette Syndrome will have an increase in tics after school. I need volunteers who are willing to count their tics for 30 minutes on 3 school days and 3 non-school days. My experiment is due on January 11, 2016, so I am hoping to collect all of my data by the end of December.  

Here’s what you need to participate: A permission form and an explanation of the procedure and a data collection table. Please contact me at 609-647-6051 or dheimowitz@gmail.com if you have any questions.

CARE for Tourette Syndrome Act reintroduced by New Jersey Senator & Congressman

Congressman Albio Sires and Senator Bob Menendez have reintroduced the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act to expand and further coordinate efforts towards research for Tourette syndrome.  This bill would promote activities at the National Institutes of Health (NIH) aimed at combating and diagnosing Tourette syndrome.

“Tourette syndrome continues to be a misunderstood disorder that is too often stigmatized, I am eager to reintroduce legislation that will work towards helping the lives of those affected by this syndrome,” stated Congressman Sires. “While symptoms can be suppressed overtime, too many individuals, particularly children, face the everyday challenge of trying to manage tics whether at school or in various social settings.  Expanded and collaborative research can teach us more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by Tourette syndrome.”

“Today, we reintroduce the CARE for Tourette Syndrome Act to reinforce our commitment of increasing awareness and attention to combat this condition,” said Senator Menendez. “This legislation aims to expand our research efforts into this commonly misdiagnosed and misunderstood disease, allowing us to provide families and individuals with TS the security and peace of mind they desperately need – knowing we will continue to build on the progress already made at research centers like the one at Rutgers University, to better the lives of those it affects.  I look forward to working together with both the House and the Senate to find solutions that ensure this important bill is able to become law.”

Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics.  The NIH estimates that 200,000 Americans suffer from the most severe form of Tourette syndrome, while as many as one in 100 exhibit milder symptoms such as chronic motor or vocal tics.  Although symptoms continue for many through adulthood, the disorder generally peaks in severity during childhood.

Specifically, this bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome, including the availability of medical and social services for individuals with Tourette syndrome and their families.  It would also instruct the Secretary of HHS to award grants to public or nonprofit private entities to establish new Collaborative Research Centers focused on Tourette syndrome research.  Such Centers would be established on a regional basis, and would conduct research, including investigations into the cause, diagnosis, early detection, prevention, control and treatment of Tourette syndrome.

Faith Rice, the executive director of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), said the bill would bring added awareness to the disorder and could provide vital services to those coping with Tourette syndrome nationwide.

“It’s a population that continues to suffer from misdiagnosis, misunderstanding and the tremendous stigma that’s associated with Tourette syndrome,” Rice told The Jersey Journal. “This puts a serious light on the disease, the disorder, and an awareness that we certainly could not create on own.”

Established in 2004, the Somerville, N.J.-based organization is the nation’s first center of excellence for Tourette syndrome and a loose model for what Sires and Menendez hope to replicate across the country. United States Men’s National Team goalie Tim Howard – a North Brunswick native who suffers from Tourette syndrome – sits on the organization’s Board of Directors.

Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

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!

TS Success Stories: Jackie, 20

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

My story! Jackie’s Life with Tourette Syndrome 

Q: What is your name and how old are you?

A: My name is Jackie, I’m 20 years old, and I’m a Junior in college.

Q: How long have you had Tourette Syndrome?

A: I’ve had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn’t officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?

A: I’ve had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?

A: I have OCD, anxiety, and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?

A: Living with Tourette’s has it’s challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette’s has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette’s Syndrome Association friends if I didn’t have TS. Tourette’s has also given me confidence. I don’t mind explaining or answering questions and I love educating people about TS. In fact i’m going to be educating 200-400 medical school students about Tourette’s in September! Having Tourette’s is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said “people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life.”

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

Continue reading

Market research study for teen Tourette patients

PLEASE NOTE: Teens4TS, the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS), and its directors and employees assume no responsibility for the accuracy, completeness, objectivity or usefulness of the information that follows in this blog post. None of the stated parties endorse any part of this post. It is merely being posted here for informational purposes only at the sole discretion and responsibility of MedQuery, Inc.

7 strategies for highly successful teens

Vanessa Van Petten is the founder, CEO and lead writer for Radical Parenting.

Hi! Happy New Year! I’m so excited to announce a new life-changing program I have created for teens. In this fun, entertaining and inspirational talk I go over the 7 strategies for highly effective teens. This is nothing like your typical high school presentation. Here are some highlights:

  • Groundbreaking research insights about the teen brain and behavior
  • Hilarious and inspiring videos
  • Immediately applicable action steps to motivate and encourage teens from all levels
  • Relatable stories for teens to feel engaged and understood

I can’t give too much away, but in this talk we delve into both the lighthearted and serious issues teens face including:

  • Effective communication with peers, parents and teachers
  • Mastering the online environment — preventing cyberbullying, staying savvy online and building a digital reputation that lasts
  • School — life balance, reducing stress and finding the right outlets
  • How to have healthy relationships with the important people in a teen’s life
  • Planning for the future, smart college applications, resume building and finding your life passions

I am stoked about this new talk and have already booked out January, February and March at High Schools, youth conferences and Parent groups around the US. Please contact our manager Lynn Campbell for pricing and date availability at manager@radicalparenting.com.

Find out if we might already be coming to your city! And yes, of course, we have tween, parent and teacher versions!

School, social media and life … take up a lot of time!

I’ve been meaning to write a blog for a long time now, but I’ve been SOOOO busy these past few, well, months! I’m graduating this coming spring, and it takes up more time than I thought. Which is pretty normal, I guess, but I’ve been ignoring that the first few months of the school year.

The thing is, I have to make a thesis, which consists of research and than a practical part, in which I have to test my research results. But to do research, you have to read a LOT. And that’s my problem, I have very little concentration and because of that, I don’t like to read. Well, to be honest, I’m afraid of books.

All the time when I’m reading, I really struggle to have enough concentration to even understand what the book says and that constantly reminds me of the fact that I have Tourette and that, because of that, there’s something I cannot do. I don’t like it when I’m reminded of that, and I’m actually really afraid of that feeling, so books were just not my thing..

For the first few months I just ignored the fact that I had to read, but that also meant that I fell a few months behind. So I finally decided to go back to my psychologist and have a session of EMDR, which is a great therapy that helps me with just about anything.

After one session it was way better, and now I’m almost back where I have to be to graduate and turn in my thesis on time. I’m still struggling to start working on it every time I need to, but I noticed I wasn’t the only student — especially not the only student with Tourette — who has that problem.

I don’t really know how to change it, except for working late at night. But that only makes it worse in the morning, and I still have two days of interning every week, so I have to get up early those days. I do keep my free Wednesdays and weekends, to rest, otherwise I go crazy. So I only have two days a week left to work on my thesis and other school stuff, but that’s OK. In the end, I really think it’s gonna be OK and I will be able to turn in my thesis on time and, if so, I might even graduate early!

To end on a positive note: The Dutch TSA is now the third most influential patient organization on social media in THE ENTIRE COUNTRY (The Netherlands)! And that’s for a big part because of me! I did a social media course a few months back and now everything is organized, and I really know what I’m doing, so our Kloutscore went up big time!

We now have way more influence and also much more interaction, followers and likes, and I’m really proud of that! Of course, it takes up a bit (more) of my time, but I really love it! It’s really a lot of fun doing it and seeing my follower count go up every day 🙂 So … NJCTS, need a pro to run your social media? 😉

Teens4TS Showcase: 3 NJ teens educate 120 Yale docs on Tourette

Between them, teenagers Grace Hawruk, Tommy Licato and Tess Kowalski have delivered more than a dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). They’ve spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.

But prior to October 8, each of their presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, the trio was invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.

“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”

Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety. Continue reading