The June 12 meeting proved more productive when, in addition to lauding Stanley for his achievement, Congressman Frelinghuysen agreed to become the fifth New Jersey Congressman and 39th nationally to sign on as a co-sponsor of H.R. 3760 – the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 introduced by Congressman Albio Sires (D-NJ13) in December.
The legislation – which also has been co-sponsored by New Jersey Congressmen Robert Andrews, Leonard Lance, Steven Rothman and Rush Holt – would amend the Public Health Service Act to provide for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health with respect to Tourette.
It also would establish regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders such as OCD, ADD, ADHD, anxiety and depression.
“Tourette Syndrome is an often misunderstood, misdiagnosed neurological disorder that affects more children than most people realize – 1 in 100 children,” Congressman Frelinghuysen said.
Congressman Frelinghuysen was most impressed with what Stanley and his family had to say about Tourette Syndrome, Stanley’s involvement in the TS community and with NJCTS, looking T.J. straight in the eye while saying, “You have something that you know more about than anyone else, and you should be very proud of yourself. You’re a hero now and been recognized for your contribution.”
After Stanley explained to the Congressman why he won a 2012 NJCTS Children’s Scholarship – for his work in making documentaries about living with Tourette Syndrome that can be found on You Tube, as well as for his role in collaborating with NJCTS on the annual New Jersey Walks For TS event in Mendham – NJCTS Executive Director Faith W. Rice accentuated how many more students just like Stanley would be greatly helped by the potential passing of the legislation.
“Programs and services by organizations such as the New Jersey Center for Tourette Syndrome can make THE difference in the lives of those with TS,” Rice said. “Having more centers of excellence nationwide will make that a reality and have a dramatic effect on individuals and families affected by Tourette Syndrome and its associated disorders such as OCD, ADD, ADHD, anxiety and depression.”
Stanley’s father, Jerome, noted that when his son was diagnosed with Tourette Syndrome in 6th grade, his family had to cope with misdiagnosis, improperly prescribed medication, uneducated school districts and other problems. Calling it “devastating at the time,” Jerome Stanley urged the Congressman to take note of the legislation, and the Congressman responded.
“This is legislation worthy of support, and I am proud to be a co-sponsor” Congressman Frelinghuysen said. “With more data collection and better coordination of Tourette Syndrome programs and activities at NIH, we can help enhance the lives of so many people.”
Thanks to the support of Congressman Frelinghuysen and other legislators from New Jersey and beyond, students such as Stanley – who recently graduated from Ridge High School and will attend Raritan Valley Community College in the fall – can have a brighter future.
“When people are educated about my Tourette Syndrome, I find it much easier to talk about it,” said Stanley, who wants to be a filmmaker. “Education is key, and things like this legislation can make that much more possible.”
More information about H.R. 3760 and its Senate companion legislation – S. 2321 – are available by calling the Center at 908-575-7350 or by visiting www.njcts.org.