10 reasons to LOVE NJ Walks for TS at Mendham

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) will be hosting its 4th annual NJ Walks for TS at Mendham on Saturday, November 23, with all proceeds benefiting the School In-Service program to educate students and teachers at schools in ever corner of New Jersey about TS, bullying, advocacy and much more.

Here are 10 reasons you will love NJ Walks for TS at Mendham if you get involved! And you don’t have to travel all the way to Mendham, N.J., to be a part. Check out these awesome options:

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  1. Registration is $22.50 through the end of the day TODAY. As of tomorrow, November 1, registration will be $25. Register yourself or an entire team NOW and save!
  2. The School In-Service Program costs NJCTS $71,000 each year. The fundraising goal for this year’s NJ Walks for TS at Mendham is just $50,000, and so far we have received a little more than half that. Help us not only reach but surpass that goal by donating or fundraising today!
  3. This year’s walk has a stellar Honorary Committee, each member of which is fully dedicated toward helping New Jersey’s Tourette Syndrome community. See who’s on the committee!
  4. On November 23, registration and check-in will begin at 9 a.m. The walk itself will begin at 10 a.m.
  5. If you attended the NJ Walks for TS at Ramapo in April, you might remember the fantastic music provided by The Lappes, a four-piece, smooth rock fusion band from North Jersey. They will be with us in Mendham, too. Read more about The Lappes, and get excited!
  6. Prizes will be given out to the captains of the THREE (3) biggest teams, the team which raises the most money and the top TWO (2) individual fundraisers not associated with a team. 
  7. There will be a 50/50 raffle: Be sure to have cash on hand to purchase THREE (3) tickets for $5, SEVEN (7) tickets for $10 and TWENTY (20) tickets for $20.
  8. There also will be a silent auction! A golf foursome at prestigious TPC Jasna Polana Golf Course in Princeton, valued at $900, will begin at $450, while the American Girl 2013 Doll of the Year, worth $110 now and more than $200 by the end of the year, will begin at $100. Winners must be present, and winning bids can be paid by cash, check or credit card.
  9. “Free To Be Me” bracelets will be available for purchase once again! You can buy ONE (1) for $3 or TWO (2) for $5.
  10. The “Ain’t No Can’t” hat and book bundle, valued at $20, will be on sale at the registration/check-in tables for only $5. Find out why this would be a terrific holiday gift for your child!

Research update: The genetics of TS and OCD

PLEASE NOTE: TSParentsOnline, the New Jersey 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 the Tourette Syndrome Foundation of Canada.

The genetic architecture of TS is largely unknown. Geneticists agree that TS is indeed a hereditary or genetic condition, meaning it is passed down from parent to child. Beyond that, little is understood about the topic.

Researchers have long sought to understand which genes specifically cause TS. Scientists continue to make strides in answering this question with the latest breakthrough coming from a team researchers from Massachusetts General Hospital and the University of Chicago.

These scientists published a report in the October issue of PLOS Genetics, which contained the first direct confirmation that both OCD and TS are highly heritable (or very inheritable). The report also discusses some major differences in the genetic makeup of the two conditions as well with OCD heritability being concentrated in specific chromosomes and TS heritability being spread among many different chromosomes.

According to one of the co-authors of the report, finding the exact genes responsible for TS is similar to trying to locate the proverbial needle in a haystack. This research attempted to narrow down where in this genetic haystack there might be needles. In doing so, this work demonstrated that the majority of genetic susceptibility to both TS and OCD can be discovered using what is called the GWAS or genome wide association study method.

The study confirmed that 20 percent of the genetic susceptibility of TS come from rare variants. In contrast, OCD derives all its susceptibility from common variants. That said, both TS and OCD have “shared genetic liability.” Additional investigations of these findings could help scientists to identify the affected genes and better understand how the expression changes contributes to someone having TS and OCD.

Further down the road, a greater understanding of the genetic origins of these conditions could contribute to the development of new therapeutic approaches. To read the full article, click here.

Wow, it’s gone!

My husband’s job of 14 years, not the tics. (Got you excited, didn’t I?)

Before you all go telling me how sorry you about the big sad scary loss, let me tell you that this is the best thing that has ever happened to us. He was OVER his job. With the new changes comes new opportunities for us as a family — GREAT opportunities. We walk the kids to school every day, pick them up together, shop together, cook together and hang out all the time. It’s awesome.

No work for him means I get to go back to work! I’ve started writing 2 times/week for an old producer who has 3 shows up for a series. There is talk of her hiring me full time for production on the set. But first … I need a sample script. Which I don’t have — not an updated one. Still, she read my book and thinks that would be a great sample script as all the material is there.

And yet … yet … as awesome as that all sounds, I would really like to publish the Mommoir sucker first. Plus I have a full time job interview tomorrow for a decent company because, well, I hear health benefits are kind of important!

I tell you all this because, for some reason, I am not in fear at all. It’s been nothing but hopeful joy and expectation. I swear, TS taught me that. I have really learned to live with uncertainty and to create my own norm. It took a while, but how wonderful it is here!

Stink’s tics are pretty low, though there are some vocals now. (I’m thinking a week of Halloween parties, gluten, school, tests and a pending Disneyland Trip are the culprit. Ya think?)

Keeping this short, but wanted to thank you all for your wonderful comments and support. I could not be so balanced without you. I hope I have given you as much centering as you have given me.

So, on a Halloween note, let’s take a show of hands: Who is letting their kids just go plum crazy on Tic Trick or Treat and stuff themselves full of more candy than we have complaints about TS?

Where tics and compulsions meet: TS plus OCD

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

Tourette Syndrome and Obsessive Compulsive Disorder often occur together.  In fact, the Centers of Disease Control and Prevention states that more than one-third of persons with Tourette Syndrome also have Obsessive Compulsive Disorder.

Often, tics and compulsions can look similar and be difficult to distinguish. Actually, to an observer it may be impossible to determine whether a behavior is a compulsion or a tic without asking the person performing the behavior and even then it may remain a mystery. The key to distinguishing a tic from a compulsion is the motivation behind the act.

As an example, lets break down a simple motor tic which could very well be a simple compulsive behaviour .  The behavior is blowing on the back of the right hand. If the behavior is a tic the person may feel a premonitory urge to perform the tic.

The premonitory urge could be a tickle on the hand, a sensation in the elbow joint prompting the movement, a sensation in the lips to purse, a feeling in the chest prompting a need to exhale a breath.  Premonitory sensations may be any feeling or urge that prompts the tic, creating the itch that needs to be scratched. The person scratches that itch and the tic is performed.

If the behavior is a compulsion, the person is prompted by a different mechanism to perform the exact same behavior.  The person may have an obsession that there may be dust on the back of the hand, a thought that they may need to blow on the back of the hand to prevent something bad from happening, a feeling of anxiety or emotional unease unless they blow on the back of their right hand. The person then performs the behavior, (not a tic), and temporarily relieves the uneasiness or anxiety.

As you see from this scenario, the behavior from the outside observer is identical. Continue reading

Coprolalia, Part 1: The Nature of Coprolalia

Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.

The term coprolalia is used to describe involuntary vocalizations that are obscene or socially inappropriate.  Coprolalia includes swearing, but also includes saying things that are culturally taboo, socially unacceptable or inappropriate because of age or context.

For example, a child using any kind of obscene language, or anyone saying negative comments about another’s ethnicity or physical appearance. Coprolalia may also refer to these phrases or words being said inside the persons head or kept to themselves which also causes internal distress for the individual.

Coprolalia can be a symptom of some neurological disorders as well as certain brain injuries.  Coprolalia occurs  as a symptom in only about 10 percent of people with Tourette Syndrome. Copopraxia are gestures and actions of the same nature as coprolalia.

Coprolalia:  Where tics and compulsions meet: Neurologically GiftedCoprolalia can occur in Obsessive Compulsive Disorder as well as Tourette Syndrome.  People who have Obsessive Compulsive Disorder as well as Tourette Syndrome have a greater struggle as the two disorders may interact with and/or perpetuate coprolalia.   The obsession with performing, (or not performing), the inappropriate behavior provokes the urge to perform the inappropriate behavior and vice versa.

Coprolalia is a particularly distressing symptom for people with Tourette Syndrome.  The nature of coprolalia, being socially inappropriate, makes everyone involved uncomfortable, that is, until everyone understands what coprolalia is and why it occurs. Continue reading

Money matters: Presentation on financial planning for children with disabilities coming to NJ on 11/7

We encourage anyone within driving distance of Denville, N.J., to take advantage of this valuable presentation!

The NJCTS Parent Connection at Morris/Sussex scored a successful debut on September 12 when it bridged the gap for parents of children with Tourette Syndrome and other associated neurological disorders who often find it extremely difficult to locate, get to know and ultimately bond with other families struggling to mitigate through similar circumstances.

The Tourette Syndrome Association of New Jersey, in collaboration with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), hopes to build on that momentum when it partners with the nationally renowned Cole Shotz law firm to foster a discussion about establishing trusts to provide financial security for children with disabilities at the next NJCTS Parents Connection at Morris/Sussex meeting on Thursday, November 7, at St. Clare’s Hospital, 25 Pocono Road in Denville. The meeting will run from 7 to 8:30 p.m.

The NJCTS Parent Connection is a bi-monthly meeting designed to provide face-to-face discussion, encouragement, friendship and networking for TS families through focusing on coping strategies. Tourette Syndrome – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 children – is difficult to live with and often can be very complicated and frustrating for fathers and mothers.

Part of that difficulty includes coming up with the necessary funds to combat the sky-high cost of caring for a child with a neurological disorder, such as TS, or another disability. A lack of planning – whether or not the use of a trust is involved – can negatively impact a family’s ability to receive government assistance for their child. During this meeting, discussions on the funding of trusts, financial planning and issues such as the designation of a guardian for a child with special needs upon his or her attainment of age 18 where appropriate will take place. A question-and-answer session will follow the Cole Schotz presentation.

“Parents of children with Tourette Syndrome often express the need to connect with other families in their area,” NJCTS Family Outreach and Volunteer Coordinator Leanne Loewenthal said. “The NJCTS Parent Connection is an opportunity to get to know parents nearby and share the joys and challenges – including financial ones – of living with a child diagnosed with Tourette Syndrome. A support network of others is vital to a family’s success, so we hope all TS families in the Morris/Sussex county area seek to ‘make a connection’ at this important, informative event.”

The NJCTS Parent Connection at Morris/Sussex is scheduled to meet in 2014 on January 2, March 13 and May 8. If you do not live in the Morris/Sussex county area, there are four other regional NJCTS Parent Connection locations throughout New Jersey:

  • Middlesex/Union counties: JFK Medical Center in Edison
  • Somerset/Hunterdon counties: Somerset Medical Center in Somerville
  • Atlantic/Ocean counties: Richard Stockton College in Galloway
  • Burlington/Camden counties: Virtua Hospital in Marlton

Families interested in participating in the November 7 NJCTS Parent Connection at Morris/Sussex should RSVP by e-mailing Leanne Loewenthal at LLoewenthal@njcts.org. As a NJCTS Parent Connection date approaches, please stay tuned to www.njcts.org for updates on if the group still will take place on that date.

Need to just a few more families for a Tourette Syndrome TV documentary!

Thank you so much NJCTS for all your help on our show. We have spoken to a few AMAZING families and are just looking for a few more to throw into the bunch. Once again, here’s the details:

The creators of the hit TV show “Undercover Boss” are searching for families where 2 or more people have Tourette Syndrome to participate in a new documentary style TV show to share awareness in a positive light.

Our goal is to bring light to this syndrome and educate people throughout the United States about Tourette. We want to show viewers that a family with Tourette lives a normal, everyday life despite the immense challenges they face.

We are conducting short casting interviews now for our project and would love to talk to you!

Please contacts us with your contact info, explain to us who in your family has Tourette and why you would be interested in participating. We ideally are looking for families that have two or more people under the same roof who have Tourette.

If that’s you and you’re interested, please contact Vanessa Garcia at 424-732-6419 or vanessa.garcia@studiolambert.com, or Sage Sinopoli at 424-732-6397 or sage.sinopoli@studiolambert.com. More information is available by visiting www.studiolambert.com.

Invitation to participate in Tourette Syndrome dissertation research

PLEASE NOTE: TSParentsOnline, the New Jersey 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 Caitlin Kilmer.

My name is Caitlin Kilmer and I am a fifth-year clinical psychology doctoral student at Immaculata University. I am in the beginning stages of my dissertation and am conducting a study examining anxiety, stress and executive functioning in children 7 to 17 years of age with Tourette Syndrome.

I am inviting you to consider participating in my study. In order to participate, your child needs to be between the ages of 7 and 17 years of age and have a diagnosis of Tourette Syndrome. Child participants may not have a diagnosis of intellectual disability, serious mental health disorder (e.g., bipolar disorder), serious behavior disorders (e.g., conduct disorder), sensory impairments (e.g., blindness, deafness) or a major neurological disorder.

The study consists of a packet of information that you will receive in the mail. The packet will contain a consent form, an assent form, three questionnaires, a sheet to log tics, as well as a stamped return envelope. You will complete the consent form as well as one questionnaire. Your child will complete an assent form and two questionnaires.

You or your child, depending on age, will keep track of the frequency of his/her tics on a provided form for a one-week time period. After the one-week time period, all forms are to be placed in the stamped return enveloped and mailed back to the researcher. For participating in the study, your name will entered into a drawing to win a $50 gift card.

If you are interested participating in this study, I welcome the opportunity to discuss this with you by phone or e-mail. In addition, I would be happy to provide any further information you may require in order to make a decision; please contact me at ckilmer@mail.immaculata.edu or 610-457-9880, or my dissertation chair, Dr. Marie McGrath, at mmcgrath@immaculata.edu or 610-647-4400 ext. 3437.

Thank you for your time.

Caring for the Caregiver: Respite services

The number of children diagnosed with a disability in Canada (and around the United States and world) has increased in recent years, and this has brought considerable attention to the topic of childhood disability supports and services.

Families of children with exceptionalities may require a number of different supports over time (initial diagnosis, transitions etc.) and across different contexts (school, home, daycare etc.). Respite services are just one of the many supports that might be useful to a family with one or more children with a disability.

The goal of respite services is to provide parents or guardians of children with limiting conditions with some temporary relief from their care-giving duties. Many parents or guardians, whether they have children with or without disabilities, use informal arrangements to achieve this. They hire a babysitter, or ask a friend or relative to provide temporary care while they go to a medical appointment, take a break or visit a friend.

Unfortunately, these informal arrangements are not always feasible when a child has one or more exceptionalities. According to the CanChild Centre for Childhood Disability Research, families of children with exceptional needs not only have a greater need for temporary care supports, they also tend to have greater difficulty making these types of arrangements. Public or private “respite services” are designed to fill this service gap.

So what are respite services? Continue reading