NEW BRUNSWICK – On June 7, the Cell and DNA Repository at Rutgers University celebrated its fifth anniversary of collecting genetic samples from individuals with Tourette Syndrome that are made available to scientists conducting TS research worldwide.
Founded by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) in 2007, the Cell and DNA Repository earlier this year was federalized by the National Institute of Mental Health and is the world’s only Tourette Syndrome repository, receiving samples and data from 26 collection sites around the world.
Dr. Jay A. Tischfield, the Director of the Human Genetics Institute of Rutgers University who oversees much of the work at the repository, on June 14 accompanied NJCTS to a meeting with Congressman Frank Pallone Jr. (D-NJ6) for a discussion about the repository and its vital importance to the Tourette Syndrome community.
“Within three months of opening, we had requests for samples from Harvard, Yale, Riken Brain Institute in Japan and the National Institute of Mental Health,” said Tischfield, who has collaborated with NJCTS on the work at the repository from the beginning. “The samples are now spread throughout the world, which was our purpose.”
Tischfield also explained how, without NJCTS, those who have Tourette Syndrome in the Garden State would not have anywhere to turn for help battling the misdiagnosed, misunderstood, inherited neurological disorder that affects 1 in 100 children.
“We do a great job in New Jersey because of (the NJCTS) organization,” Tischfield said. “But it’s important to remember that there is no cure for Tourette. And there is no medication for the tics that come with it. There are medications for the co-morbid conditions, such as OCD and ADHD, but in children, there can be serious side effects. The real issue, from my perspective, also is failure for most kids to get properly recognized. This leads to problems in school and elsewhere.”
Pallone was impressed with not only the function of the repository, but also the programs and services of the New Jersey Center for Tourette Syndrome.
“When I return home from Washington, I am able to hear directly from organizations and constituents who are effected by our work in Congress, and to take back with me invaluable insight about the needs of my district,” Pallone said. “My recent meeting with representatives from the New Jersey Center for Tourette Syndrome & Associated Disorders was remarkably informative, leaving me with a much greater understanding of the effects of these disorders, the groundbreaking research being done right in my district to find the cause and treatment of these disorders, and also how I can assist with their efforts. I look forward to working with the Center to help raise awareness and understanding of these disorders.”
Pallone also took note of the Center’s plans for a potential building location on the Livingston Campus of Rutgers University, which would house research, medical, educational and other facilities associated with the Center and Rutgers’ Graduate School of Applied and Professional Psychology.
“It’s a unique idea, one that is centered on a place where families could come in and participate in important TS research,” NJCTS Executive Director Faith W. Rice said. “Pulling all of these ideas together, along with the research component, will greatly enhance our collaborative process.”
More information about the repository and the programs and services offered by NJCTS is available at www.njcts.org.
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