Children feel less alone through Tourette's syndrome organization
by JESSICA L. FINCH Associate Editor

Although Tourette's syndrome is not an extremely rare disorder, children who have the condition usually don't know many others like them.

There might be only one child in a school district.

To help fill that void, the Tourette Syndrome Association of Greater New York State has formed a camp for children with the neurological disorder. The chapter sends children from around the state to Hickory Hills in Bath, N.Y., for a three-day retreat.

The results have been wonderful, chapter founder Sue Connors said.

"Sometimes at camp is the first time they meet someone else with Tourette's," she said. "It makes a huge difference. They meet people who understand them, and they feel that someone accepts them."

Connors added that there is a change in the children's demeanors when they find others like them. They are more outgoing and "throw" themselves into the camp activities.

To raise the funds needed to support the annual camp and other programming, a Chiavetta's chicken barbecue has been planned from 4 to 7 p.m. Friday, Aug. 24 at the Independent Health Youth and Family Center, 5005 Sheridan Drive, near Mill Road.

Dinners are $7.99 presale by calling 839-4430 or $8.99 at the door. Entertainment, which includes karaoke, will be provided by a disc jockey.

"Our chapter works on a lot of local awareness and advocacy," said Connors, who founded the Western New York chapter in 1983.

It grew to encompass all of New York State, except New York City. Connors founded the chapter because she lived for three decades with undiagnosed Tourette's.

"For 30 years I had been looking for a diagnosis," she said, adding that the first symptoms occurred when she was 6 years old.

Watching a TV show one day she realized that she had Tourette's. Upon being diagnosed, there was the realization that many of her family members have the condition as well.

"It can be hard. It affects the while family; it can be very embarrassing," she said.

Connors added that living with Tourette's can be socially devastating for children and adults. The severity can vary, and in some cases people suffer from uncontrollable tics, while others shout out, sometimes inappropriate words. In schools, children with the condition are often victims of teasing or bullying.

Tourette's is often accompanied by another disorder, sometimes obsessive compulsive disorder or attention deficit hyperactivity disorder. It is also hereditary.

One of Connors' missions has been to educate others about the disorder by traveling around the state holding workshops.

A retired teacher from Mill Middle School, Connors uses her experience to speak about the disorder and how is affects families and individuals.

Across the state, 700 families are members of the TSA and 400 are in Western New York.

To help fund workshops and the three-day overnight camp, attend the chicken dinner on Aug. 24. Takeout will be available.

Donations can also be made by mail to TSA of Greater NY State, 268 Mill St., West Seneca, NY 14224.

Barbecue fundraiser planned

The Tourette Syndrome Association of Greater New York State will hold a chicken barbecue to raise money for camp from 4 to 7 p.m. Friday, Aug. 24 at the Independent Health Youth and Family Center, 5005 Sheridan Drive. Call 839-4430.