Baldwin family discusses need for Tourette Syndrome cure and legislation with Congressman Jon Runyan

Bill H.R. 3760 would establish regional centers of excellence across the country to conduct research into finding a solution for the inherited neurological disorder that affects 1 in 100


MOUNT LAUREL – Congressman Jon Runyan (R-NJ3) is not new to the plight of causes searching for cures. The Congressman has worked with the Leukemia-Lymphoma Society, the Cystic Fibrosis Foundation and the Juvenile Diabetes Foundation, while also serving on the Board of the Alzheimer’s Association of the Delaware Valley and hosting the “Score for the Cure” Golf Tournament benefiting prostate cancer research in New Jersey.

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), along with its partners and collaborators, is looking for a cure for TS – an inherited neurological disorder that characterized by vocal and motor movements known as tics and affects 1 in 100 children.

Bill H.R. 3760, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2011, would 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.On August 14, NJCTS and the Baldwin family visited Congressman Runyan at his office in Mount Laurel to discuss Tourette Syndrome and what is being done to bring about a cure – including the introduction in December 2011 of proposed federal TS legislation by Congressman Albio Sires (D-NJ13).

“We are so desperately looking for the research for a cure,” said Carolyn Baldwin, whose children, Anna, 13; Sarah, 12; and Eric, 9, all have Tourette Syndrome. “Right now, my children are on medication for blood pressure, which may help with tics, but you’re not really sure what the potential effects are. NJCTS has done a lot for us. Thanks to them and our research, we have been very fortunate. But there are a lot of people out there that desperately need more help, and the legislation can provide that.”

Anna, who participates in NJCTS’ Youth Advocate Program, was diagnosed with TS when she was 12. She was resolved to educate others about the disorder.

“I have an arm tic, one that pops my shoulder in and out,” Anna said. “Some find that weird. It is important to me that people learn more about TS, because the more we learn, the easier it will be for everyone who has the disorder.”

“Diagnosis is through observation. The earlier you get diagnosis, the better chance a kid has to be on the right track for treatment,” said Rice, who invited the Congressman to become the 41st co-sponsor of H.R. 3760 and join New Jersey Congressmen Rush Holt, Robert Andrews, Chris Smith, Leonard Lance, Rodney Frelinghuysen, Steven Rothman and the deceased Donald Payne as supporters. “Families need support to navigate their way through this maze because if you have a diagnosis, you will need help in schools, at home and in the community. This legislation will provide that much-needed support.”During the meeting, Congressman Runyan asked about the diagnosis tools available to help those with Tourette. The Baldwins and NJCTS Executive Director Faith W. Rice informed the Congressman that there are not enough, and that many children go undiagnosed for years.


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.