H.R. 3760, which would provide more research and 4 to 6 Centers of Excellence for TS, was introduced by fellow New Jersey Congressman Albio Sires in December 2011
WASHINGTON, D.C. – The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to announce that United States Congressman Frank LoBiondo (R-NJ2) has become the 42nd Congressman to co-sponsor the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2011.
The CARE Act, with bill number H.R. 3760, was introduced to the House of Representatives by Congressman Albio Sires (D-NJ8) on December 20, 2011. Congressman LoBiondo is the ninth New Jersey Congressmen to co-sponsor the bill. Former New Jersey Congressmen Steven Rothman and the late Donald Payne signed on in early 2012, joining Sires and the following re-elected Congressmen:
- Robert Andrews (D-NJ1)
- Jon Runyan (D-NJ3)
- Chris Smith (R-NJ4)
- Leonard Lance (R-NJ7)
- Rodney Frelinghuysen (R-NJ11)
“I’m pleased to support this bi-partisan legislation, which will leverage the expertise and resources of the federal government to further research and treat Tourette Syndrome,” Congressman LoBiondo said. “I applaud the determination and efforts of the NJCTS and the countless families in South Jersey and across the nation who continue to advocate for a better understanding and quality of life for those afflicted by this disorder.”
This bill 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, a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and adults.
It also would establish 4 to 6 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 neurological disorders such as Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder, anxiety and depression.
NJCTS, the nation’s first center of excellence for TS, was established in 2004. It is the only agency in New Jersey – and one that leads the nation – that supports the needs of children and families dealing with TS, an often misunderstood and misdiagnosed inherited neurological disorder characterized by repeated involuntary movements and uncontrollable vocal sounds called tics.
NJCTS Executive Director Faith W. Rice believes support for individuals and families with Tourette Syndrome is something of which everyone can be a part.
“We are pleased that Congressman LoBiondo has signed on with this important legislation and hope that other Congressmen and Senators will follow in his footsteps,” Rice said. “New Jersey has changed the face of TS research, education and support through partnerships and collaborations, and we look forward to seeing more develop on behalf of the children and families nationwide affected by Tourette Syndrome.”
One of those families is the Baldwins, who are from Mantua in Congressman LoBiondo’s district. The Baldwins, who have three children – all with TS – joined Rice for a visit to the Congressman’s office on November 19. Two of the children – Anna, 14, and Sarah, 12 – shared their personal experiences about what it’s like to have TS and why this bill is so important.
“As of right now, no medicines are manufactured for Tourette Syndrome,” said Anna, who is part of NJCTS’ Peer Youth Advocate program. “Finding a cure would not only help me and my family, but families all over the country. Tons of kids would benefit from it.”
“Our family is not the only family with this problem,” said Sarah, who attends Clearview Middle School “My friend, who I’ve known since third grade, was diagnosed with Tourette Syndrome in fourth grade. I’ve seen kids mock her, imitating the way she jerks her head and the sounds she makes. Being a kid is hard, but being a kid with Tourette Syndrome is much harder.”
Read more from the Baldwin family on the TSParentsOnline blog. The complete language of bill H.R. 3760 and other legislative press releases pertaining to TS are available by visiting www.njcts.org. To register your support for H.R. 3760, please visit POPVOX.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.