Agency will educate about genetic diseases

A $2,500 grant from the Massachusetts-based Genzyme Corporation will enable the Jewish Family & Children’s Service of Greater Monmouth County to educate the community about diseases that disproportionately affect Ashkenazi Jews.

The program, Plan Your Jewish Genes, is targeted to older adolescents and their families with information about the roughly half a dozen genetic diseases that afflict Jewish families. They include Tay-Sachs and lesser-known conditions like Familial Dysautonomia and Canavan disease.

“We’re excited about the grant and doing something to educate the community about the issue,” said JFCS executive director Paul Freedman. “We hope to partner with other Jewish organizations and day schools to get this information out.”

JFCS will disseminate information covering screening, carrier frequency, and testing as well as what resources are available.

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Freedman applied on-line for the grant, which, he said, is renewable, and later watched a webinar hosted by Genzyme. “It was eye-opening,” he said. “Some of these other diseases are just horrendous.”

Freedman believes that Ashkenazi couples should get tested before having kids. Besides the fact that such couples should be fully informed, “there is some treatment for certain diseases; they have to be caught very early,” he said.

He also welcomes input from the community — including families who have had firsthand experience with such diseases. It would be worthwhile “if people wanted to share their experiences and just make sure that people saw this as something that could happen to them.”