First Congressional Tourette Syndrome Caucus a success for entire nationwide TS community

Bi-partisan effort spearheaded by the Tourette Syndrome Association featured the support of 13 Representatives and focused on knowledge, awareness, education and research.

WASHINGTON, D.C. – Scores of families, legislators, nonprofit groups and government organizations showed up en masse September 17 for the first Bi-partisan Congressional Tourette Syndrome Caucus at the Rayburn House Office Building in Washington.

Hosted by the Tourette Syndrome Association (TSA) and co-chaired by Representatives Steve Cohen (D-TN9) and Peter King (R-NY2), the caucus was established to increase knowledge and awareness of Tourette Syndrome, and to educate Members of Congress on current and future research initiatives for TS.

Other Caucus members included Representatives Albio Sires (D-NJ8), Elijah Cummings (D-MD7), Ted Deutch (D-FL21), Keith Ellison (D-MN5), Steve Israel (D-NY3), Zoe Lofgren (D-CA19), Carolyn McCarthy (D-NY4), Joseph Pitts (R-PA16), Ed Whitfield (R-KY1), John Yarmuth (D-KY3) and Bill Young (RFL13).

Following opening remarks by Congressman Cohen and the introduction of new TSA President Annetta Hewko by the First Vice Chair of the TSA Board of Directors, Michael Wolff, two distinguished members of the TSA’s medical and scientific advisory boards took to the dais to carefully explain how Tourette Syndrome is a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and adults, and is a legitimate public health issue.

Dr. Douglas W. Woods, a professor in the Department of Psychology and Director of Clinical Training at the University of Wisconsin at Milwaukee, detailed the merits of Comprehensive Behavioral Intervention for Tics (CBIT) and how it can be used in conjunction with or in lieu of medication, dietary changes, supplements and psychotherapy, among other methods, to treat the symptoms of Tourette Syndrome and tics.

Dr. Tamara Hershey, an associate professor of psychiatry at Washington University School of Medicine, complemented Dr. Woods’ comments with an overview of the TSA’s research initiatives, including genetics, neuroimaging, neuropathology and clinical trials – including the use of Deep Brain Stimulation to treat severe Tourette Syndrome.

Kathy Giordano, TSA’s education specialist, also detailed the lengths to which TSA is going to educate families, teachers and other professionals about Tourette Syndrome through its in-service program.

The nearly 100 people in attendance – which included representatives from the Centers for Disease Control and Prevention, the U.S. Department of Education, the National Institutes of Health and the Food & Drug Administration – were thoroughly impressed by the vast array of work taking place in the national TS community.

“By successfully executing the first Congressional Tourette Syndrome Caucus, the Tourette Syndrome Association has demonstrated the clear and present need for the federal government to not only step up its awareness of TS, but further partner with organizations such as the TSA and the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to foster excellence in research, advocacy and support for the tens of thousands of TS families nationwide,” NJCTS Executive Director Faith W. Rice said. “We heartily applaud this effort and look forward to future endeavors and collaborations with the TSA and all corners of the Tourette community.”

More information about Tourette Syndrome is available by calling NJCTS at 908-575-7350 or by visiting www.njcts.org.