Congress creates caucus for Tourette syndrome


Tourette syndrome may get a higher profile in Congress now that a congressional caucus has been formed to highlight the condition.

The Congressional Caucus on Tourette Syndrome was formed by Rep. Steve Cohen (D-Tenn.) and Rep. Peter King (R-N.Y.). Caucuses – and there are hundreds – are established as sorts of internal lobbying organizations by members of the House.

"The bipartisan Congressional Caucus on Tourette Syndrome is long overdue and will increase awareness on this often misunderstood neurological disorder and promote legislation to help those who are suffering from it," Rep. Cohen said in a statement.

Rep. King, who noted that he was a recipient of the Tourette Syndrome Association’s 2013 Public Policy Award, said in the same statement, "I look forward to working with my colleagues on the Congressional Caucus on Tourette Syndrome to recognize, educate and address the needs of the children and adults that endure the stigma, isolation and psychological impact of this disorder."

According to the National Institute of Neurological Disorders and Stroke, Tourette syndrome, named for the French neurologist who first described it in 1885, is a neurologic disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations. These are popularly called tics.

The Tourette Syndrome Association says that it is often misdiagnosed and inadequately treated, and estimates that 200,000 Americans have the condition. TSA President Judit Ungar said in a statement that the new caucus should be helpful, noting that "congressional support has proven to be instrumental in accelerating progress in other disorders, such as cancer, autism, and Parkinson’s disease."

The goals of the caucus include increasing knowledge and awareness of Tourette syndrome and its impact on patients and educating members of Congress on current and future research for Tourette syndrome and also about related disorders, including attention-deficit/hyperactivity disorder and obsessive-compulsive disorder.

Currently, additional caucus members include Elijah Cummings (D-Md.), Ted Deutch (D-Fla.), Keith Ellison (D-Minn.), Steve Israel (D-N.Y.), Zoe Lofgren (D-Calif.), Carolyn McCarthy (D-N.Y.), Joseph Pitts (R-Pa.), Albio Sires (D-N.J.), Ed Whitfield (R-Ky.), John Yarmouth (D-Ky.), and Bill Young (R-Fla.).

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