Assemblyman Troy Singleton to Chair NJ Walks for TS Honorary Committee

Assemblyman Troy Singleton (D-7) will chair the NJ Walks for TS at Medford Lakes Honorary Committee

Assemblyman Troy Singleton (D-7) will chair the NJ Walks for TS at Medford Lakes Honorary Committee

The first NJ Walks for TS advocacy event in South Jersey has a champion in Assemblyman Troy Singleton (D-7) who will serve as chair of the event’s Honorary Committee.

NJ Walks for TS at Medford Lakes will take place on Sunday, Sept. 20 at Beach 1/Upper Aetna Lake. It’s an offshoot of the highly successful NJ Walks for TS at Mendham which began in 2010 to support the work of the NJ Center for Tourette Syndrome and Associated Disorders (NJCTS). NJ Walks for TS was started by kids, for kids; in fact, the impetus behind bringing this event to South Jersey is the Heicklen family who want to raise awareness and support for the thousands of kids and families living with TS.

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary vocal or muscle movements known as tics. TS is frequently accompanied by ADHD, obsessive-compulsive disorder, anxiety, depression or learning disorders. As many as 1 in 100 people show signs of TS, however, the disorder often remains misunderstood and misdiagnosed. Proceeds from NJ Walks will benefit the Education Outreach Programs of NJCTS which deliver outreach to healthcare professionals, educators, and students across the state.

“Assemblyman Singleton’s support means so much to the families and professionals we serve,” said NJCTS Executive Director Faith W. Rice. “We’re grateful for his commitment to raising awareness of this important advocacy event.”

“It is an honor to serve as Chair for the Honorary Committee for the first ever South Jersey walk for Tourette Syndrome,” said Assemblyman Singleton. “Tourette Syndrome affects thousands of children in our community every day. It is through events such as the NJ Walks for Tourette Syndrome in Medford Lakes that we can together, continue to spread awareness and stand up on behalf of those with Tourette Syndrome. I encourage everyone to join me on September 20th and support this great cause.”

NJ Walks for TS at Medford Lakes will feature activities for families, music and an atmosphere of acceptance for all ages. Registration is $22.50 now through August 31st, after then it will be $25. Donations will be accepted online for individuals and teams-regardless of event attendance. Sponsorships are still available for corporations, small businesses and individuals by calling 908-575-7350.

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Next Wednesday Webinar “Anxiety & Test Taking in School” is August 19

LOGO2Join us for our next webinar in the Wednesday Webinar series on August 19, 2015, from 7:30pm to 8:30pm EST.

Students from elementary to high school are taking more tests than ever. How does the anxiety around testing affect them and their results? This webinar will give parents and students alike ways to identify stressors and help students cope with the anxiety around test taking.

Dr. Colleen Martinez is a licensed clinical social worker and a registered play therapy supervisor with more than 20 years experience providing clinical services to children and their families. She has worked in hospital, correctional, outpatient mental health, private practice, and school settings, and specializes in play therapy and treating children. In her private practice, she provides supervision and consultation to individuals and agencies, particularly regarding interventions with children. She provides school based play therapy to preschoolers in Irvington, NJ and is also a part time lecturer at Rutgers University in their MSW program.

Register for the webinar
After registering you will receive a confirmation email containing information about how to join the Webinar.

Register Today for South Jersey’s First NJ Walks for TS Event on Sept. 20

5k walk and family fun run in Medford Lakes will benefit NJ Center for Tourette Syndrome

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The NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is expanding its successful NJ Walks for TS program to include South Jersey. Registration is now open for individuals and teams to join NJ Walks for TS in Medford Lakes on September 20th.

NJ Walks events in North and Central Jersey draw hundreds of children and adults as a show of support to their loved ones living with TS—an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics. People with TS frequently have associated mental health and learning disabilities including obsessive-compulsive disorder (OCD), depression, anxiety, and attention deficit hyperactivity disorder (ADHD).  As many as 1 in 100 people have symptoms of TS, yet the disorder is often misunderstood.

All funds raised by NJ Walks for TS will benefit the NJCTS Education Outreach Program which delivers professional trainings to educators and healthcare providers, anti-bullying and youth leadership training as well as college scholarships for high school students diagnosed with TS.

The annual 5K walk and family fun run has taken place in Mendham since 2010 and in Princeton/West Windsor since 2014. NJ Walks is designed by kids, for kids and is presented in Medford Lakes by the Heicklen family. Known as a day of  “advocacy and self empowerment” on behalf of the 20,000 school-aged children living with Tourette Syndrome in New Jersey, the September 20th walk is part of NJCTS’s commitment to serving families and professionals in the region.

“We are pleased to bring this exciting event to Burlington County,” said NJCTS Executive Director Faith W. Rice, “Over the past decade, our outreach to schools, hospitals, and community organizations in South Jersey is making a difference in the quality of life for the TS community and has the potential to help children who have yet to be diagnosed and improve services to the children and families living with TS.”

“Since its inception, NJ Walks for TS has drawn support from state and federal legislators, sponsors, and the hundreds who attend to make the day a celebration of what makes us unique,” said Rice. “The focus here is that what makes us different makes us stronger—everyone has fun when we stand up for advocacy, awareness, and empowerment.”

Registration is $22.50 per person until September 1, when the price increases to $25 per person. To register, or to make a donation, visit www.njcts.org.

Teaching Compassion for Kids with Anxiety Disorder

Editors note: Earlier this spring, the Bergen Record published a series about kids and anxiety. The series focused on how anxiety affects North Jersey kids, their families, school systems, and the mental health community. TS Parents Online contributor TomO was inspired to write the following letter in response.

Photo illustration: JOHN TOMAC/The Record

Photo illustration: JOHN TOMAC/The Record

Anxiety disorder
a serious issue

Regarding “Child’s fear can become parents’ nightmare” (Page BL-1, April 12):

I am hopeful that parents, schools, friends and neighbors take the time to educate themselves and understand that this is an illness. It is not something that a child, or adult, has any choice about – they must live with the anxiety, and the disease has control over them. I am a father of a 14-year-old and I am very proud of him. He has been diagnosed with anxiety disorder.

As The Record article states, it is very difficult for families to deal with these illnesses. It wears you down, poses a financial burden, and you never know what to expect next. The lack of understanding from colleagues, families, schools, communities and friends is heartbreaking to experience.

I can’t begin to tell you how many times my wife and I get “the look” in a restaurant or have had to leave a social or family function.

“What’s wrong with you?” “Can’t you control your child?” “What kind of parents are you?” These are the negative messages conveyed by the judgmental glances.

I once offered to a school official a chance to have a content expert come into the school and talk about the impact anxiety disorder has on people. I was told by the school: no. I was told that school wouldn’t be the appropriate place.

If not at schools, then where is the appropriate place? Anxiety is one of the leading illnesses in children and teens today. What is more important than teaching our children compassion for other children’s struggles?

Two research opportunities at Overlook Medical Center

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Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ
Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Phase2a, Open-Label Trial Evaluating the Efficacy, Safety, and Pharmacokinetics of Orally Administered SNC-102 in Adult Subjects with Tourette Syndrome

Ages: 18-75

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ
Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02217007?term=synchroneuron+tourette%27s&rank=1