SOMERVILLE NONPROFIT SUPPORTS FAMILIES
    DEALING WITH TOURETTE'S
    By CHAD HEMENWAY
    Staff Writer

    Lisa Rongo said that once her child was diagnosed with Tourette syndrome it was as if her
    family was "in a tunnel, and you feel like there's no way out."

    "We asked if there was anything we could do -- any resources," Rongo said. "The doctor looked
    at us and simply said, 'No.' Meanwhile you have a child looking up at you saying, 'Mommy,
    mommy, make it stop.' "

    Now, Rongo helps families facing similar situations see light at the end of the tunnel. She is in
    charge of communications for Somerville's Tourette Syndrome Association of New Jersey Inc. --
    a nonprofit organization that has grown into a nationwide, if not worldwide, leader in
    advocacy, education and support services for doctors, families, school districts and others.

    The association trains doctors to recognize and treat the often misunderstood and
    misdiagnosed neurological syndrome that may affect as many as one in 200 children, said Faith
    Rice, executive director of the association.

    Rice and Rongo met with Courier News editors last Thursday to discuss the associations'
    efforts.

    "Pediatricians just aren't educated or interested sometimes," Rice said. "The child is often
    diagnosed with something like OCD (obsessive compulsive disorder) -- even in schools, where
    children with TS are shuffled off to classes with special needs or behavioral problems."

    Misunderstood symptoms

    Rice, whose own child was diagnosed with Tourette syndrome in the early 1990s, said 26,000
    schoolchildren in New Jersey have some form of the syndrome, which has wide-ranging
    symptoms that are often to blame for its misunderstanding. Tourette syndrome usually is
    accompanied by related disorders such as OCD, attention deficit disorder, depression, anxiety
    and learning disabilities, she added.

    However, Rice said the truth is children with Tourette syndrome simply need a little
    understanding because their minds, though plagued by a disconnect of appropriate
    neurotransmitters that can outwardly cause uncontrollable physical movements or sounds, can
    comprehend and learn.

    "People with (the syndrome) can lead very productive lives," Rice said. "People with Tourette
    syndrome graduate high in their class, hold jobs and can become doctors."

    The association is leading the charge for treatment and research for the Tourette syndrome.
    In 2000, the association partnered with Rutgers to create the New Jersey Center for Tourette
    Syndrome and Associated Disorders -- the only student-run clinic in the nation for Tourette
    patients and families.

    Rice said the University of Medicine and Dentistry of New Jersey also has joined the center's
    treatment and research efforts.

    "You can see families in individual or group settings here, getting support and treatment," Rice
    said. "It has really become an attractive program for Rutgers. It's grown to a point that there
    are waiting lists for students to get in because you learn so much, and it really is fascinating."

    Ground-breaking research

    Shortly after the center was created, Rice approached Jay Tischfield, a genetics researcher
    at Rutgers University, about his cell and DNA repository. Tischfield and his son have Tourette
    syndrome. This month, the public repository will be collecting samples from Tourette patients.
    It will be the first such collection in the world, Rice said.

    Getting rid of the stigma about the condition also presents a challenge, Rice said.

    For instance, the disorder is widely known for the inappropriate language it can cause a
    patient to involuntarily shout, but Rice said only 5 to 15 percent of cases actually have the
    symptom.

    The association, which Rice said started with a handful of volunteers in a basement office in
    1988, appears to be making a significant difference for those with Tourette syndrome.

    "I recently got a call from a woman who was gushing about her son graduating first in his class
    at a university," Rice said. "I didn't remember, but she said we got involved with the family
    when her son was in the fifth grade. The school wanted him removed to a school for
    emotionally disturbed children. We went in and educated the school and did it every year.

    "That's what we're about," she said. –From the Courier News website www.c-n.com
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