NJCTS Youth Spokesman says “The kids of New Jersey cannot speak for themselves” and encourages lawmakers not to forget the 28,000 NJ children with TS.
February 23, 2009- New Jersey Center for Tourette Syndrome was recognized by the State Senate on Monday for its accomplishments in providing support for the 28,000 New Jersey children and families dealing with Tourette Syndrome. Senate Resolution 77, sponsored by Sen. Christopher “Kip” Bateman (R-16) and Sen. Jeff Van Drew (D-1) applauds NJCTS for its “Wednesday is TS Day” advocacy campaign. Families from across New Jersey gathered at the statehouse to cheer as the organization was recognized by State Senator Richard Codey during the voting session.
NJCTS Youth Spokesman Dean Roncati led a group of kids with TS to personally thank Senator Bateman and Senate President Codey for their support. “It takes courage to live life with Tourette. It also takes courage to be an outspoken supporter,” said Roncati, “The kids of New Jersey cannot speak for themselves and rely on [lawmakers] for help.”
Tourette Syndrome is a neurological disorder most frequently characterized by involuntary motor or vocal movements known as tics. TS is diagnosed at the alarming rate of 1 in 200 children. For most of these kids, TS is accompanied by other conditions like obsessive-compulsive and attention deficit disorders, learning disabilities, anxiety and depression. Without proper treatment and support, TS can have a debilitating effect on a child’s ability to learn and become self-sufficient.
New Jersey Center for Tourette Syndrome is a collaboration among the Tourette Syndrome Association of New Jersey, Rutgers University and healthcare professionals throughout the state to provide referrals for comprehensive diagnostic and treatment services, training opportunities for medical and school professionals as well as coordinated services for families. NJCTS established the world’s first Tourette Syndrome DNA Sharing Repository at Rutgers University which will lead researchers across the globe to understand more about this puzzling disorder- leading someday to better treatments and even a cure. NJCTS has made New Jersey the epicenter of this exciting bio-research.
“There is such a strong demand for clinical professionals who are knowledgeable in TS and its associated disorders, so NJCTS has developed training to raise a new generation of doctors and therapists who can recognize TS and help New Jersey families find the best treatments,” said Executive Director Faith Rice. Through school in-service training, hospital grand rounds and teacher workshops at colleges throughout the state, NJCTS is helping to demystify TS and make the path of understanding clearer and safer for each newly diagnosed child.
At the heart of NJCTS is a commitment to advocacy – educating the public about TS, breaking the stigma attached to this misunderstood disorder and helping TS kids reach their full potential. The “Wednesday is TS Day” campaign is a two-fold effort to create understanding: TS families are encouraged to share their perspective and the general public is challenged to open their minds to the facts of this neurological disorder.
“We are very excited about this Senate Resolution, and we are very proud of our youth advocates who came to Trenton and stood up for the thousands of kids who currently need, or will come to rely on, the services of NJCTS for proper treatment and an effective education,” said Rice. “We’re proud of our progress, but there are thousands of kids who are not receiving proper care yet, and until there is a cure for TS, we’ve got a lot more work to do.”
For more information on NJCTS, please call 908-575-7350 or visit www.njcts.org.