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Congressman Albio Sires Reintroduces Legislation to Expand Research for Tourette Syndrome in the 116th Congress

Feb 11, 2019
Press Release

(Washington, D.C.) – Congressman Sires reintroduced H.R. 1131, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2019 to expand and increase the coordination of Tourette syndrome research at the National Institutes of Health (NIH). Congressman Sires is joined by Rep. Steve Cohen (D-TN), Rep. Eliot Engel (D-NY), Rep. Adam Schiff (D-CA), and Rep. Ro Khanna (D-CA) as original cosponsors.

 “I am proud to reintroduce legislation that aims to help the lives of those affected by this syndrome which is too often stigmatized and misunderstood,” stated Congressman Sires. “The NIH’s work is critical for advancing our understanding of disorders and diseases that impact thousands of Americans daily. Expanded and collaborative research will enable us to provide greater insight into the causes of this disorder, in search of better treatments.”

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. 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 it. The bill would direct the Secretary of Health and Human Services (HHS) to develop a new system to collect data on Tourette syndrome and award grants to establish new Centers of Excellence focused on Tourette syndrome research. The centers would conduct research on the cause, early detection, and diagnosis along with prevention, control and treatment of Tourette syndrome.

“The NIH does critical research on Tourette’s Syndrome to understand this disease and search for a cure,” expressed Congressman Cohen. “As a co-chair and founder of the Congressional Tourette Syndrome Caucus, I’m pleased to join my colleagues in expanding and increasing the research funding in this bill.”

“There is no known cause for Tourette Syndrome, nor is there a medication available that completely eliminates symptoms. But this legislation offers hope. It will help further the work of dedicated scientists who aim to improve the lives of the individuals and families afflicted with TS. I’m proud to support this important step forward,” said Congressman Engel.

The full text of H.R. 1131 can be found here.