And it was that bill, also known as H.R. 3760, that brought Lance to the Somerville Public Library on Tuesday, May 1, for a roundtable discussion with some of the constituents from District 7 that utilize NJCTS’ programs and services.
Lance spent nearly an hour carefully listening to the cares, concerns and questions posed by the Cannizzaro family of Flemington, the De Los Santos family of Alexandria Township, the Foster family of Somerset, Alissa Letts of Hillsborough and Marilyn Lamarca of North Plainfield.
Each family told their story of how Tourette Syndrome entered their lives, as well as noted the importance of how H.R. 3760 – which was introduced by Congressman Albio Sires (D-NJ13) in December – would change the lives of so many with the neurological disorder that effects as many as 1 in 100 people.
Among the topics discussed were getting more education about Tourette into schools and how NJCTS already has helped bridge that gap through its in-service presentations, educational conferences and awareness activities. Bullying and diagnosis of the disorder also were talked about. But education was clearly on the minds of each member of the roundtable.
“Thanks to the support from NJCTS and the education opportunities they provided us and for us, we were able to go into the school district and advocate for our son,” said Alissa Letts, whose 16-year-old son, David, was diagnosed with TS in seventh grade.
However, as Greg Foster pointed out, not all school districts are open to outside organizations coming in to educate their students – no matter what the topic.
“Public awareness for autism is far greater than it is for Tourette Syndrome, but not all of the school districts are receptive,” said Foster, who noted that the prevalence for autism – about 1 in 88 – is similar to that of TS (1 in 100). Lance’s response to Foster’s assertion was clear: “We have to make them receptive.”
Another problem for families with Tourette Syndrome, as brought up by Susan De Los Santos, is that often the diagnosis of TS comes years later than it should – if at all.
“Doctors are not aware of the syndrome or taking into consideration that it exists. They need to know,” said De Los Santos, a social worker at Somerset Medical Center whose 11-year-old son, Sam, also spoke with Congressman Lance at the roundtable.
Lance also had an excellent response for De Los Santos: “One of the concerns we have in Washington is that Tourette Syndrome is not spotted when it should be. There needs to be greater awareness in the health system and the school system. Education is important regarding the public nationwide in general with Tourette Syndrome.”
After listening to each constituent and addressing every question posed to him, Lance personally thanked each family, as well as NJCTS, for setting up the opportunity.
“I want to thank you all for being here, especially the young people,” he said. “You are very strong advocates for Tourette Syndrome. The most effective advocates are young people. I want you to know you have lots of support and that you will have even more support as we continue.”
NJCTS Executive Director Faith W. Rice is grateful for that support, noting that without aid from the federal level, families with Tourette would not receive the type of help they need.
“We are delighted that Congressman Lance has signed on as a key co-sponsor of H.R. 3760,” Rice said. “We hope that the entire New Jersey delegation will follow in Congressman Lance’s footsteps, sign on as co-sponsors for this legislation and show why New Jersey is at the forefront of providing services for Tourette Syndrome families, outreach to the medical community, training for teachers and research into better treatments and a cure.”
More information about bill H.R. 3760, which seeks to establish Centers of Excellence across the nation to undertake extensive research into the causes, treatments, diagnosis and preventions of TS – is available by visiting www.njcts.org or www.popvox.com/