A Somerville nonprofit is not only raising awareness about Tourette syndrome, but also directly facilitating new research into the condition, thanks to a partnership with Rutgers University.
The New Jersey Center for Tourette Syndrome and Associated Disorders Inc. is celebrating the five-year anniversary of its collaboration with the Rutgers University Cell and DNA Repository, known as RUCDR Infinite Biologics.
Together, the two formed the NJCTS sharing repository, a growing bank of blood cell and DNA samples from patients with Tourette. Those samples are available to Rutgers researchers, but also can shipped to researchers around the world, providing a central resource for scientists trying to understand the genetic underpinnings of the condition.
Jay Tischfield, RUCDR's founder and CEO, said in the past, the Tourette syndrome community wasn't as well organized as other patient groups. That's a problem, he said, because when it comes to research funding "the squeaky wheel gets the grease."
NJCTS has worked to change that through traditional and non-traditional advocacy. Tim Omaggio, president of NJCTS's board, said the partnership will RUCDR allows his group to become more directly involved in the search for new treatments.
"Things just weren't moving quickly enough, and we wanted to make something happen," he said.
NJCTS helps recruit Tourette syndrome patients to donate blood samples. Those samples are processed and stored at RUCDR until requested by researchers.
The system has received grant funding from the National Institute of Mental Health.
RUCDR works with a number of nonprofits, in addition to its work for government and industry clients. The NJCTS repository is the only one of its kind — and it's also personal for Tischfield, who has a son with Tourette syndrome.
Tourette is characterized by "tics" — involuntary movements or vocalizations. On TV, the condition is typically stereotyped as one that causes people to blurt out curse words; Omaggio said only a small minority of patients have tics involving the use or profanity.
Still, the stigma surrounding Tourette can cause students to get chastised at school or be painted as troublemakers.
That's a shame, Tischfield said.
"Kids who are extremely talented end up — I don't want to be too literal here — but sort of on the trash pile," he said. "And this is something that can be avoided."
Tischfield said when he started working with NJCTS, there had not been much interest in Tourette syndrome among the pharmaceutical industry.
"It became obvious to me that the field needed a push scientifically," he said.
Not much has changed so far, but Tischfield is optimistic. He noted that drug discovery can cost hundreds of millions of dollars, and the chance of any new compound actually working is relatively low. He hopes the sharing repository will make TS more attractive to drug companies by making it easier for non-industry scientists to conduct the kind of early-stage research that is often too costly or risky for drug companies to undertake. Such research could then pave the way for a pharmaceutical company to come in and direct the science toward drug development.
As the sharing repository has grown in size and reputation, it's become a beacon of light in the Tourette syndrome community. Gary A. Heiman, a Rutgers geneticist in charge of the day-to-day operations of the NJCTS collaboration, said families affected by the condition are eager to help.
"I get contacted by people all over the United States saying, 'Can I participate?' " he said.