The NJCTS mission did not include research until we realized that we could lead an effort to bring researchers together to work collaboratively to find answers for the cause of TS.
In 2017 NJCTS research partners were responsible for first-ever breakthrough research findings into the genetics of Tourette Syndrome. Less than a year later the team’s second breakthrough occurred which indicated that TS is indeed an inherited disorder and, like Autism, potentially 300 – 400 genes contribute to having the disorder. These breakthroughs changed the course of genetic research into Tourette Syndrome.
How did this all start?
NJCTS founder Faith Rice saw a newspaper article that Dr. Jay Tischfield, a professor at Rutgers University, was awarded more than $20 million in federal funding to build and run the world’s largest university-based biorepository for mental health disorders. Tourette Syndrome was not on the list of disorders to be included in the biorepository. Knowing about the lack of progress in TS research, Faith reached out to Dr. Tischfield.
“I didn’t think such a prominent scientist would even take my call, but he did and we talked for more than an hour about the need, the lack of collaboration among researchers, and lack of progress in finding answers for this overwhelming neuropsychiatric disorder,” Faith said.
“Within a month of that call Dr. Tischfield agreed to add TS to the list if I could recruit enough families to provide genetics samples to show there was support for such research and in turn raise the money to add TS to the repository’s portfolio.”
So the effort began to recruit families to participate in this new and promising research. Over the next two years, 200 New Jersey stepped forward to participate.
Thanks to those families, a collaboration with Yale University, and funding from the State of New Jersey, NJCTS and Rutgers established the NJCTS Cell & DNA Sharing Repository – the world’s first sharing resource of TS clinical data and genetic samples from which all qualified scientists could draw for their research.
Four years into the pilot study, the National Institute of Mental Health (NIMH) recognized the TS repository as an important federal research asset and funded its expansion to 25 collection sites around the world with the goal of identifying genetic factors that play a role in causing TS.
All of this was made possible because individuals and families answered the call! More research needs to be done to find answers, treatments and eventually a cure for TS. You and your family are critical to making that happen. Without participation from individuals and families, no research can be done. SO PLEASE STEP UP – PARTICIPATE – YOU CAN BE THE DIFFERENCE!
Email firstname.lastname@example.org to become part of this breakthrough research. If we can provide more information, please call NJCTS at 908-575-7350.
Please act today.