District 12 constituents with Tourette Syndrome discuss legislation with Congressman Rush Holt

April 18, 2012 - PRLog -- Congressman Rush Holt (D-NJ12) was well-informed about Tourette Syndrome when he signed on as a co-sponsor of bill H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011, earlier this year.

After meeting 12-year-old Tess Kowalski and 17-year-old Amanda Silvers, two of his constituents who have Tourette, Holt’s knowledge of TS – and the growing need for more research and support – has grown by leaps and bounds.

The Kowalski family, of Plainsboro, and the Silvers family, of East Brunswick, are advocates for Tourette Syndrome, a neurological disorder which affects as many as 1 in 100 people – including Tess and Amanda.

During a visit to Congressman Holt’s office with the New Jersey Center for Tourette Syndrome (NJCTS) on Friday, April 13, they spoke at length about what it is like to live with Tourette, how they received their diagnosis and what they are doing to help educate their communities about the disorder.

“Many people with Tourette Syndrome find that their condition is misunderstood,” Congressman Holt said. “New efforts to collect data and conduct research, such as the CARE for Tourette Syndrome Act, are a promising way to increase understanding of the disorder and to improve the lives of so many people.”

A primary purpose of this legislation is to 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.

Tess Kowalski and her family discussed the legislation with Congressman Holt and also introduced him to NJCTS’ student-led peer in-service training program, which she led recently at South Brunswick High School and will again on Monday, April 23, at Terrill Road Middle School in Scotch Plains.

Amanda Silvers discussed her role as a teen leader of NJCTS’ patient-centered training program, which has educated doctors, nurses and pediatric residents about TS. During one of her presentations, Silvers talked to more than 75 physicians at Saint Peter’s University Hospital.

Congressman Holt was highly impressed with the poise, intelligence and determination the girls displayed during his meeting with them and emphasized that in part because of their efforts, a brighter future for those with TS is on the horizon.

“The two young people who visited me, Tess Kowalski and Amanda Silvers, articulately described their lives with Tourette Syndrome, and I wish everyone – especially doctors and research scientists – could hear from them,” Congressman Holt said.

NJCTS Executive Director Faith W. Rice is proud that Congressman Holt has chosen to stand alongside the Center, bill H.R. 3760 and the thousands of New Jersey residents who have Tourette Syndrome.

“We wanted to personally thank Congressman Holt for co-sponsoring bill H.R. 3760 and emphasize the importance of his participation,” NJCTS Executive Director Faith W. Rice said. “It was wonderful to see how well he took to what Tess and Amanda had to say about living with Tourette Syndrome, and we look forward to continuing to work with Congressman Holt well into the future.”

More information about NJCTS or bill H.R. 3760 is available by visiting www.njcts.org. To register your support for H.R. 3760, please visit www.popvox.com/bills/us/112/hr3760.