Senator learns about education programs that had profound impact on the lives of teenagers Dean Ronati and David Brummer, as well as the proposed Tourette Syndrome legislation
NEWARK – Over the years, Senator Frank Lautenberg (D-NJ) has been instrumental in assisting the autism community in the Garden State. On August 7, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) visited the Senator at his office in Newark to initiate a similar relationship on behalf of the TS community, which is populated by more than 28,000 children and more than 85,000 individuals in the state alone.
Accompanying NJCTS were Conrad and Dean Roncati, as well as Marc and David Brummer. Dean and David are teenagers with TS, an inherited neurological disorder characterized by vocal and motor movements known as tics, and were instrumental in demonstrating to the Senator the remarkable work NJCTS has accomplished in the state and on their behalf.
David Brummer wholeheartedly agrees. Prior to his classmates getting educated by NJCTS, David regularly was bullied and singled out for having Tourette. Now, “everything that was difficult melted away. Working with NJCTS has been a tremendous source of learning and comfort.” Now 20 and a student at Skidmore College in Upstate New York, the Livingston native has led presentations for NJCTS at his former middle school and at Overlook Hospital in Summit.“I was really the first case of Tourette Syndrome in my school,” said Dean Roncati, 18, of Closter. “But thanks to NJCTS coming and doing education programs for my teachers and classmates, it’s been much easier for the school to handle kids with Tourette Syndrome. NJCTS showed a video, talked about TS and answered questions, and it really helped everyone understand what Tourette is all about.”
Dean’s father, Conrad, used the opportunity to not only to put New Jersey’s success in tackling Tourette Syndrome, but also prop up Senate bill S. 2321, federal TS legislation which was introduced by Senator Robert Menendez (D-NJ) in April after originally being proposed to the House of Representatives by Congressman Albio Sires (D-NJ13) in December 2011.
“What we have done here in New Jersey is nothing short of phenomenal. We have created an alliance with Rutgers University. We have world-renowned people who are looking into Tourette Syndrome. That’s huge. To come from New Jersey is very, very special,” Conrad Roncati said. “Now, what we want to do through the NIH (National Institutes of Health) with the legislation is to have centers of excellence like NJCTS spread around the country to do research, collect data and generate databases of genetics. We are looking for a cure. We hope these programs won’t be needed in the future, but right now, they are, which is why this legislation is so vital.”
Another aspect of the legislation – providing for even more education and family support – was succinctly summed up by Marc Brummer, who described what he and his family have been through as a result of David and his other son, Aaron, having TS.
“Kids with Tourette Syndrome have such a difficult time in school. With any kid who is ticcing, you obviously don’t want to tic in the middle of the class because you become an object of derision for the people who don’t get it. You can suppress the tics, but if you’re concentrating on suppressing, you can’t do the work,” said Marc Brummer, who owns the famous Hobby’s Deli about 3 blocks north of Senator Lautenberg’s office. “So what we need is more education like what NJCTS does so the class and teachers learn that it’s just an interruption as if the intercom were calling someone to the office. NJCTS has been so successful at helping the kids and families deal with it and get through it, and we need more of that.”
More information about the legislation, as well as NJCTS programs and services, is available by calling 908-575-7350 or by visiting www.njcts.org.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.