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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Chance to thank NJ Senator for supporting Tourette Syndrome was invaluable

MyCentralJersey.com

MyCentralJersey.com

A few weeks ago, Senator Stephen Sweeney visited the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to meet a few of the kids and families who benefit from the organization’s resources and tireless efforts. His visit was chronicled well by the local media, MyCentralJersey.com, with a video, photos and a story.

As those who consider NJCTS part of your family know, budget cuts have affected NJCTS funding drastically over the last four years, and threats to resources and services seemed inevitable.  So when the Center got the incredible news that they would be receiving a grant in this year’s State budget, my son, Ethan (13) and I were grateful for the chance to thank Senator Sweeney and let him know how our lives have been changed forever for the better because of the support and services of NJCTS.

As any parent of a child with TS knows, an occasion on par with meeting an important government official for a press conference, replete with reporters, cameras and ink barely dry on grant funds gifted, has the potential to create a stress-storm of epic proportions.

Despite our efforts to prepare Ethan for the change in routine and create calm, he woke up ticking, anxious, unreasonable and angry.  Of course, we considered cancelling, but we had committed, and Ethan very much wanted to tell his story.

At the NJCTS office, we sat around a conference table with the other kids/families who would be sharing with the Senator their stories about the ways in which NJCTS had helped them.  Up until the minute Senator Sweeney walked through the door, Ethan’s vocal tics were frequent, and he persistently fake head-butted me, one of his newer tics where he thrusts his head forward as though he’s going to hit me in the face and stops short before he actually does.

And then Senator Sweeney entered the room, and his presence was calming.

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“Best weekend of the year” returns as registration for 10th annual NJCTS Family Retreat Weekend opens

The popular Saturday night Talent Show once again will be a featured portion of the NJCTS Family Retreat Weekend from June 6-8 at YMCA Camp Bernie in Hunterdon County, N.J.

The popular Saturday night Talent Show once again will be a featured portion of the NJCTS Family Retreat Weekend from June 6-8 at YMCA Camp Bernie in Hunterdon County, N.J.

The NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) is turning 10 this year, and as part of the anniversary celebration, it is proud to announce that registration for the 10th annual NJCTS Family Retreat Weekend – to take place June 6-8 at YMCA Camp Bernie in beautiful Hunterdon County, N.J. – is now open.

The NJCTS Family Retreat Weekend – dubbed by past attendees as “the best weekend of the year” – always has been a source of encouragement, fun, inspiration, learning and relaxation to children with TS and their families. Nearly 200 people from all over New Jersey and the Tri-State Area attended in 2013, and more are expected in 2014 as NJCTS expands the weekend and its programming to celebrate a decade of memories.

“I can’t say enough about the NJCTS Family Retreat Weekend experience at Camp Bernie,” camper Jenifer O’Neill said after taking her family on the retreat in 2013. “The work that the team at NJCTS puts into this amazing program is unsurpassed. It is place where our kids can feel comfortable being themselves and know they are not alone. The professionally led groups for parents are so supportive and educational, and the presence and support of youth advocates is also a tremendous plus. It is priceless to have time to spend with other families, see familiar faces and share stories. I also love making new connections and deepening existing ones.”

The weekend will begin earlier this year, running Friday afternoon through Sunday afternoon, to accommodate additional program and allow attending families to help NJCTS celebrate 10 years of accomplishments, advocacy, awareness and, of course, camaraderie. Cabins are expected to fill up fast this year, so families are encouraged to register early by filling out the 2014 NJCTS Family Retreat Weekend online registration form. The cost for this year’s weekend is $40 per person, and the registration deadline is May 1. Continue reading

Camp Carton offers sleepaway opportunity for kids with TS ages 10-12 in Tri-State Area

]Well-known sports radio personality Craig Carton has Tourette Syndrome (TS) – an inherited, misdiagnosed, misunderstood neurological disorder characterized by tics. Two of his children have TS, as well. And to Carton, that’s reason enough to launch Camp Carton this July at the Ramapo for Children Camp in Rhinebeck, N.Y.

Camp Carton is a seven-day sleepaway camp serving children ages 10 to 12 diagnosed with TS and living in the Northeast – primarily New York, New Jersey and Connecticut. The camp, which will be fully funded by Carton’s Tic Toc Stop Foundation, will host up to 50 children during its debut week – July 14 to 20.

“I am creating the camp because I know there are a lot of kids with Tourette’s whose families are a little wary of sending them to a camp because they don’t know how the other kids will handle or react to the tics and some of the other things that come along with Tourette’s,” said Carton, a popular part of WFAN Sports Radio’s “Boomer and Carton” morning show in New York. “So my thought was, why not give those kids an opportunity this year to have a sleepover camp experience where the families don’t have to worry and the kids can enjoy camp for what it’s supposed to be.”

Collaborating with Carton to help make Camp Carton a success is the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS), which annually hosts its own Family Retreat Weekend at YMCA Camp Bernie in Port Murray, N.J. Carton hopes many NJCTS families will consider Camp Carton because of its close proximity to New Jersey and appeal as a parent-free option in addition to the Family Retreat Weekend. Continue reading

Still thinking about Camp Bernie

It has been just over a month since my family and I attended the annual NJCTS Family Retreat Weekend at Camp Bernie for the 5th time, and I am still thinking about the experience.

Every year, I look forward to catching up with folks that I only see at the retreat, participating in the support-group discussions with other parents, and enjoying the camp activities. Reconnecting with our old friends, and meeting new families, reassures my wife and me that we are not alone in the struggles (and unique joys!) of living with children affected by TS.

This year, despite my wife breaking her ankle just before the teen discussion panel (!), I left camp rejuvenated and inspired.

What I look forward to the most at Camp Bernie, however, is watching my daughters. It is one of the few places outside of our home that they can tic with little to no anxiety or embarrassment, and it provides them with a valuable opportunity to interact with others that have TS.

The welcoming environment not only makes them feel that they are an integral part of a larger community, it fosters their confidence in who they are and what they have to offer.

My younger daughter, who has been very resistant to standing on a stage, spent hours practicing with her sister to perform in front of everyone at the talent show, while my older daughter, recognizing that what she has to say is important and may help others, participated in the teen discussion panel.

Over the years, I have watched them grow to be self-assured kids who advocate for themselves and others, and their experiences at Camp Bernie have undoubtedly been an important part of this process.

The annual retreat has had a tremendously positive impact on our lives and others who attend. I look forward to participating in future years and meeting new friends, watching our old friends continue to grow, and, most importantly, taking my daughters to a very special place where they can just have fun.

Camp = fun activities, educational seminars, new friendships

For nearly a decade, children and families affected by Tourette Syndrome and its associated disorders have converged upon YMCA Camp Bernie in beautiful Hunterdon County each June for a few days of fun, learning and the realization they are not alone in their daily battles.

It’s been one month since the 9th annual Family Retreat Weekend took place, and many of the nearly 50 families who attended the event put on by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) still can’t stop talking about it – especially the kids, many of whom already have asked their parents to circle June 6-8, 2014, on their calendars for the 10th anniversary weekend.

“The weekend was wonderful. The kids did not want to leave, and neither did my husband and I,” said Anne Marie Palmeri, whose family attended the event for the first time. “I think it was a great experience for my older son. It made him feel like he was not alone. He was able to talk to other kids about having TS. It was just a great family experience, and we all agreed that we would make this a family tradition each year.”

Families had plenty of opportunity to bond while participating in many of the camps numerous activities, including a wall climbing, swimming, canoeing, volleyball, basketball, archery, arts & crafts, yoga and much more. There also was a campfire and a Talent Show led by DJ Harry Hubert – always two of the biggest hits at the Family Retreat Weekend. Continue reading

More to say about Camp Bernie

Again this year me and my two daughters packed up the van and headed out for our favorite weekend of the year. All year I wait for these three precious days of TOTAL RELAXATION. And I do mean total relaxation.

As a parent of a child with Tourette, you are always on your guard when you go out in public. You know what I mean — that nagging voice at the back of your head worrying about if your child will have a ticcing episode and how people around you will react.

No matter how hard you try not to think about it, it is always there lurking below the surface. My mamma bear instincts are always on high alert when out in public — ready to spring in to action to protect your child. There’s also that feeling you get when your child goes off with another group of kids by themselves, hoping that they will have a NORMAL kids day.  How you long for those days before diagnosis when you didn’t have this concern.

Well, if you’re sitting there reading this and are nodding your head saying, “Yes, I know what she means” and have never been to Camp Bernie, I suggest you mark your calendar right now today to attend next years camp. Circle June 6-8, 2014, in red pen, mark it with stars and start counting off the days. Continue reading

“Approaching Tourette Syndrome” article in Chinese publication describes Camp Bernie experience

The following story was written (originally in Chinese and translated here into English) for the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) by Lichun Zhang and appeared June 28 in an all-Chinese publication online and in print:

Chinese Camp picTourette Syndrome, also known as multiple tics-coprolalia syndrome, refers to involuntary and sudden multiple tics and twitching, accompanied by the outbreak of vocal and Tourette tic disorders. Currently, Tourette Syndrome and autism incidence is almost the same, and although Tourette Syndrome has drawn mainstream attention and launched a wealth of research, Asian-Chinese groups know very little about it.

Understand Tourette Syndrome

It is understood that Tourette Syndrome pathogenesis is related to genetic factors, neurotransmitter imbalance, psychological, environmental and a variety of other factors, and may be a result of interactions between these factors during development. Onset is mainly between 2 to 15 years old, more in males than in females.

The symptoms are often intermittent, sometimes more severe and other times less severe. The symptoms increase when stressed, anxious, fatigued or lack of sleep; reduce when relaxed; and can disappear when asleep. Patients often have normal IQ. Some children have problems with attention, learning difficulties, mood disorders and other psychological problems, sometimes complicated with obsessive-compulsive disorder, attention deficit hyperactivity disorder and other disorders. First reported by the French physician Gilles de la Tourette, as early as 1885, the pathogenesis of Tourette Syndrome is not well understood due to the complexity of the disease and the limitation of research. Continue reading

From first-timers to long-timers, families tout value of retreat weekend

For nearly a decade, children and families affected by Tourette Syndrome and its associated disorders have converged upon YMCA Camp Bernie in beautiful Hunterdon County each June for a few days of fun, learning and the realization they are not alone – that help not only is out there, but is readily and plentifully available.

This year’s Family Retreat Weekend on June 7-9 was the best yet put on by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) – thanks to a generous grant from the Brad Cohen Tourette Foundation; sponsors such as the HAPI Foundation, ShopRite, Wegmans and Costco; many hard-working volunteers; and the scores of children and families who traveled as many as 150 miles to be a part of the “best weekend of the year.”

Each attending family had a different motivation behind attending, but there was a general theme that emerged – especially from the numerous first-time families: “We are not alone, and we are so glad that there are professionals and other families out there just like us who can help us.”

“This was our first weekend, and it was invaluable,” said Megan Devero, who attended camp with her daughter. “It was helpful for my daughter to meet and spend time with other kids experiencing the same issues that she has so she realizes she is not alone in this. She could have fun, relax and be herself.” Continue reading

Camp is my time to relax

Price of Camp: $100
Cost of gas: $20
Lost wages: $200+
Weekend with no funny stares and explanations: PRICELESS

Just another FABULOUS experience once again at the NJCTS Family Retreat Weekend at YMCA Camp Bernie. This is truly our favorite weekend of the year.

For the kids, it a great opportunity to meet others like themselves. As a parent it is a weekend where I can COMPLETELY relax — that I can put my mama bear guard down and don’t have to worry about tics. It is also a time to vent and talk about our struggles during the year.

I’m not kidding when I say this is my favorite weekend of the year. It is so nice to be able to go out in public and be completely relaxed. Just the fact that you don’t have to explain things to people is the best feeling in the world.

Had another wonderful weekend, and can’t wait till next year.