Tourette Syndrome Association of New Jersey
50 Division Street • Somerville, New Jersey 08876
Phone 908-575-7350 • Fax 908-575-8699
Web Site: www.tsanj.org • e-mail: NJTSA@aol.com
FOR IMMEDIATE RELEASE
TUESDAY, DECEMBER 6, 2005
NEW JERSEY LEADS THE WAY
WITH RELIEF FOR TOURETTE SYNDROME SUFFERERS
New HBO documentary raises awareness about TS, and Tourette Syndrome Association of New Jersey, Inc is providing
some great answers
SOMERVILLE, NJ - Dec 6, 2005 -- Late last month, a compelling new film entitled: "I Have Tourette's, But Tourette's Doesn't Have Me" made its' national debut on HBO. The half-hour documentary, which continues to air on HBO Family through mid-December, highlights the experiences of over a dozen American kids suffering with the neurological disorder which causes individuals to make uncontrollable vocal and/or motor tics that they "just can't help". The film -- interviews with kids between the ages of 6 and 13 -- explores what it is like to grow up with Tourette Syndrome, what measures they are taking to control it, and the challenges they face in their efforts to be accepted into the social mainstream as a "normal" kid.
TS is far more common than most people think -- "As many as one in every hundred individuals may show at least a partial expression of TS-like symptoms at some point," according to recent research released by Yale University scientists. In New Jersey, that translates to well over 80,000 individuals.
"I'm thrilled that the documentary, as well as other recent news activity, is bringing attention to the disorder", states Faith Rice, president of the Tourette Syndrome Association of New Jersey, Inc., a local 501-3(c) not-for-profit dedicated to serving the needs of individuals and families with TS. "It's amazing how widespread TS is and how misunderstood it is, and this increased level of awareness can only help."
"But, what's equally as important to understand is just how underserved the community is that has to deal with TS is...," Rice goes on. "...and happily, this news can call some attention to the work we're doing and the ways we are trying to address this problem for people here in New Jersey."
New Jersey Center for Tourette Syndrome created -- a model program for the Treatment of TS
Earlier this year, through a grant provided by The New Jersey Department of Health and Senior Services, TSANJ -- in conjunction with UMDNJ Medical Schools in Newark and New Brunswick; and the Rutgers University Graduate School of Applied and Professional Psychology -- inaugurated The New Jersey Center for Tourette Syndrome (NJCTS).
The New Jersey program -- the first of its kind in the nation -- will offer a much-needed diagnosis and treatment resource for the thousands of New Jersey families with TS. There is a severe shortage of facilities and professionals with expertise in Tourette Syndrome, and the lag time from onset of symptoms to proper diagnosis often stretches to seven years or more.
"NJCTS will not only serve New Jersey families in immediate need," Rice observes. "It will also provide a wonderful opportunity for training a new cadre of experienced professionals that will be qualified to treat future cases of TS. The participation of UMDNJ Schools and Rutgers promotes the study of TS and specialization for new generations. There's nothing quite like it, and hopefully, it will serve as a model for similar programs in other states.
"In conjunction with the Center", Rice goes on, "a DNA genetics consortium will be created through the National Institutes of Health's DNA and cell Repository based at Rutgers. The consortium will make DNA samples available to researchers studying the causes and new treatments for TS... or, maybe even a cure. The stars have aligned to make New Jersey the hub of positive activity for an underserved group that can surely use the help."
TSANJ has been championing the needs of TS families for years
Other services provided by TSANJ include:
- referrals and support through the 24-hour 877-NJTS-INFO helpline
- a program of family support groups held at hospitals throughout the state
- school and legal advocacy
- educational and professional training
- public and professional awareness
- a highly successful school in-service program. (So far, over 30,000 teachers have received training on how to spot and deal with TS kids in school.)
- a summer camp for TS kids
- scholarship programs
Families and/or others seeking information or help can reach the Tourette Syndrome Association of New Jersey, Inc. at 877-NJTS-INFO or www.tsanj-org.
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