From East Brunswick to Washington: Tourette Syndrome Needs Support Now
Thursday, September 26, 2013 • 5:42pm
EAST BRUNSWICK – Amanda Silvers has been battling Tourette Syndrome for 13 years. The daily struggle in school, at home and in her everyday life has brought about consistent pain emotionally, physically, socially and financially. And like most of the 1 in 100 children, teenagers and adults who are affected by this inherited, misdiagnosed and misunderstood neurological disorder, she is longing for the day those struggles are eradicated by a cure – or at least hope for one.
That is why Silvers, an East Brunswick High School graduate who is a freshman at Ithaca College in Upstate New York, stands firmly behind the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013. The bill, tagged H.R. 146, 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 (NIH) with respect to Tourette Syndrome.
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 TS and its associated disorders. And to Silvers, 18, that kind of awareness, advocacy and hard work could very well lead to a cure in her lifetime.
“I cannot express how much stress and pain I have been through. However, when I started working with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), they brought new resources and knowledge (of the legislation) that gave me hope that there would someday be a cure,” said Silvers, who has worked closely with NJCTS over the past several years to give in-service presentations at schools. “I knew I wanted to be a part of that difference.”
Silvers, who has been thoroughly trained by NJCTS and is a National Tourette Syndrome Youth Ambassador, believes that not only is this bill necessary, it is something that everyone – not just those affected by TS – should support wholeheartedly.
“The more people that know what the disorder is, the better chance that someone will find interest in the subject and find a cure,” said Silvers, who has visited the Plainsboro office of Congressman Rush Holt (D-NJ12) to secure his support for the bill. “This bill is absolutely necessary, not only for this generation of kids, but for future generations as well. With the deepest respect and passion, I ask every Senator and Representative of Congress to sign this bill. It may or may not affect your life, but the Tourette community depends on it.”
Showing support and making Congressional Representatives aware of this bill is a simple, 30-second process. Anyone – whether they are of voting age or not – can go to POPVOX to support the bill and leave a note for their Representative stating why they believe the bill is so important. All comments are automatically and immediately forwarded to those Representatives.
And, as with any bill, if enough people say it’s important, Representatives will take notice. That’s what happened in Congressman Holt’s District 12, and countless other Congressional Districts across the country.
“The importance of the CARE for Tourette Syndrome Act of 2013 cannot be understated, neither can the need for everyone in the TS community – those affected, their family and their friends – to show their support and alert their Representatives,” NJCTS Executive Director Faith W. Rice said. “The future quality of TS education, advocacy and research hinges on whether this bill becomes law. So make today the day you join us in saying, ‘Yes!’ to this vital piece of legislation.”
More information about Tourette Syndrome and bill H.R. 146 is available by visiting www.njcts.org, the TSParentsOnline blog, the Speak Out For Tourette Syndrome page on Facebook or POPVOX.
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