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Learn about Williams syndrome


Published: Wed, May 12, 2010 @ 12:00 a.m.

By HAROLD GWIN

gwin@vindy.com

YOUNGSTOWN

If you mention Williams syndrome to someone you know, chances are they’ve never heard of it.

It’s a rare genetic condition, occurring about once in every 10,000 births, that causes medical and developmental problems.

The Williams Syndrome Association in Troy, Mich., plans to make the public more aware of Williams syndrome and has launched a weeklong national awareness campaign that runs through Saturday that will feature fund-raising walks and other events across the country.

Two local families with children who have Williams syndrome would like to see a local awareness project developed and are interested in organizing a Mahoning Valley event in the future.

Justin Frease, son of Linda and David Frease of Boardman, was diagnosed in 1986 when he was 6 months old.

“I can tell you, back then, no one even knew about it,” said Linda Frease.

“I was overwhelmed,” she said, explaining that she didn’t know anyone else who had Williams syndrome and found the local medical community unable to provide references. Getting in touch with the national organization proved to be a major help, she said.

Anita and Joseph Graff of Boardman have a 3-year-old son, Billy, who was diagnosed as a baby after developing an eating disorder, a common symptom.

Anita Graff said she will be attending a national Williams syndrome convention in July to learn more about fundraising for research.

She wants to launch a local effort, looking at perhaps a run or a golf outing as a way to spread awareness and raise research money.

Linda Frease said she and her husband are both runners and participate in a number of local races each year. They’re willing to help Graff set up a Williams syndrome run, she said.

According to the national organization, most young children with Williams syndrome are described as having similar facial features, including a small, upturned nose, a long upper lip, wide mouth, full lips, small chin and puffiness around the eyes. Most also have some type of heart or blood vessel problems, and there are a host of other developmental issues they may face.

One common characteristic is an overly friendly personality that makes them want to strike up a conversation and be friends with everyone.

“They are the friendliest people you’ll ever know,” Linda Frease said.

Older children and adults with Williams syndrome often demonstrate intellectual strengths and weaknesses, such as strong speech, long-term memory and social skills but weak fine-motor and spatial relations.

Anita Graff said the closest event to the Mahoning Valley during awareness week is Brittany’s 5K Run/Walk Benefit for the Williams Syndrome Association on May 29 in Coshocton Lake Park in Coshocton County. Registration begins at 7:30 a.m. at the picnic shelter behind the Lake Park Pavilion. Race time is 8:15 a.m. For information, call (740) 502-3818.

Anyone interested in learning more about Williams syndrome or getting involved in a fund-raising effort should contact the Williams syndrome Website at www.williams- syndrome.org.


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