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.
Monday, May 17, 2010
Youngstown News, Learn about Williams syndrome