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Sires Reintroduces Legislation to Expand Research for Tourette Syndrome

Press Release

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Location: Washington, DC

Congressman Sires reintroduced H.R. 146, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act to expand and further coordinate efforts towards research for Tourette syndrome. This bill would promote activities at the National Institutes of Health (NIH) aimed at combating and diagnosing Tourette syndrome.

"Tourette syndrome continues to be a misunderstood disorder that is too often stigmatized, I am eager to reintroduce legislation that will work towards helping the lives of those affected by this syndrome" stated Congressman Sires. "While symptoms can be suppressed overtime, too many individuals, particularly children, face the everyday challenge of trying to manage tics whether at school or in various social settings. Expanded and collaborative research can teach us more about the cause and treatment of the disorder to help improve the lives of those individuals impacted by Tourette syndrome."

Tourette syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. The NIH estimates that 200,000 Americans suffer from the most severe form of Tourette syndrome, while as many as one in 100 exhibit milder symptoms such as chronic motor or vocal tics. Although symptoms continue for many through adulthood, the disorder generally peaks in severity during childhood.

The CARE for Tourette Syndrome Act would seek to improve the daily life of those living with Tourette syndrome and their families by expanding and coordinating research efforts on the disorder to advance our understanding of the syndrome. Specifically, this bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome, including the availability of medical and social services for individuals with Tourette syndrome and their families. It would also instruct the Secretary of HHS to award grants to public or nonprofit private entities to establish new Centers of Excellence focused on Tourette syndrome research. Such Centers would be established on a regional basis, and would conduct research, including investigations into the cause, diagnosis, early detection, prevention, control and treatment of Tourette syndrome.

"I am proud to reintroduce the CARE for Tourette Syndrome Act and bring to the forefront the need for an increased commitment to preventing and treating this disorder. It is my hope that through this legislation, we can grasp a better understanding of Tourette syndrome and in turn, help enhance the lives of so many," expressed Congressman Sires.


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