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.

New Jersey teens: Are you a high school senior with TS? Yes? Then apply for a scholarship!

The NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to annouce the 2015 scholarship awards to graduating New Jersey high school seniors diagnosed with Tourette Syndrome.

The NJCTS Children’s Scholarship Program was established in 2004. Over the past 11 years, NJCTS has awarded more than 200 scholarships to graduating high school seniors in every corner of New Jersey. In 2014, 19 students were awarded scholarships by NJCTS.

To view the 2014 winners and other past NJCTS Children’s Scholarship essays,   please click here. A scholarship award recipient must:

  • Download/print out, complete and return the application form by May 1, 2015
  • Be domiciled in the State of New Jersey
  • Be a high school senior in a private, public or home school
  • Be planning to attend a college or trade school on a part-time or full-time basis in Fall 2015 
  • Have a diagnosis of Tourette Syndrome
  • Provide a record of grades from 9th grade to present
  • Provide letters of recommendation from a member(s) of his/her school staff (such as teacher or guidance counselor), coaches (who have known you for four years or less) and/or community people who know you well (church or other community members)
  • Submit an essay of 1 to 2 pages, typed and double spaced, describing how Tourette Syndrome has played a part in your life. You may also submit media (pictures, video, music) displaying your talent(s) no more than 5 minutes in length.

The winners will be selected based upon academic achievement, community involvement and accomplishments as an individual living with this challenging and complex neurological disorder. The amount of the prize, criteria and selection of the winners shall be in the sole discretion of NJCTS, which reserves the right to determine the amount of the award and whether to award it based upon the applications.

Winners will be announced in June following a review of all applications by the NJCTS Children’s Scholarship Committee, they will be notified by mail.

The winner also must agree to having his or her essay published here on the Teens4TS blog; appear in local media publications and on www.njcts.org, if applicable; speaking to local students about Tourette Syndrome, if deemed necessary; and attending meetings with state and federal legislators, if necessary. Winners also may have NJCTS present the scholarship award at their school’s year-end awards assembly/banquet.

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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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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Positive distractions

This past weekend was quite difficult. My head jerking tic came back with a vengeance. It has been painful and exhausting. After a day or two, I realized I had a giant lump on the base of the back of my neck. The next day I began one of my hitting tics, which is hitting my shoulder repeatedly. So, as you can imagine, it was not long before I had a bit of a bruise on my right shoulder. Today, I am not ticking nearly as much, but I am still a bit sore.

It was not just physically that I have felt exhausted, but mentally as well. The only other time I could think of when my tics actually hurt was when they first became a huge problem and I was finally diagnosed with Tourette’s. So, those thoughts and the anxiety that it was going to continue getting worse before it would get any better added to the natural effects of sitting around and doing nothing all weekend…well, you can probably imagine how epically BLAH I felt. 

I will admit that by Sunday evening, when I had started my hitting tic, I was beginning to feel downright horrible and slightly depressed. As I sat at home by myself Monday, I started searching within myself for ways to make myself feel better. I quickly discovered that all the old negative coping skills I used to apply in this situation were all that I could think of. I wondered…where have all the positive distractions I had adopted in time?

This morning, as I was browsing the YouTube universe, I came across a video by Emma Blackery about being angry and things to do when you are angry that will help you feel better and calm down. As I was watching this video, I began thinking of the positive distractions and coping skills that I have learned over the years. So, I thought I would share some of the things I love to do that really help calm me down when I’m anxious or upset or angry or help distract me when I am feeling depressed.

NUMBER 1!!!

Music. Everyone loves music. You can’t tell me that you genuinely do not like music of some kind. Not everyone likes the same genre of music or the same artists, but I am pretty positive that we all like some form of music or another. If not, let me know because I have never met anyone who doesn’t.

Anyway…yeah…Music is a great escape. When you can find a song that expresses exactly how you are feeling in that moment, it is as if someone finally understands what you are going through and what you are feeling. And when you find out that someone else likes the same artists or songs, you instantly have something in common with that person that you can talk about. Music brings people together in ways you can’t even imagine. Music can brighten your day and bring a whole new perspective and attitude into your day. Happy music makes people happy!

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OCD IS REAL!!!

It hurts so much to be told by the ones who you love the most that your OCD isn’t real and you should just “get over it”. It hurts so much when I try to explain that OCD is just as real as any other disorder and when my mom tells me that that’s complete BS. She screams at me that it’s my fault and makes me feel so much shame over something I wouldn’t wish on my worst enemy.

This isn’t the first time this has happened, and I’m sure it won’t be the last, but it hurts just as much every time. Mental illness is real. I live with it every day and I know all too well how real it is.