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December 17, 2004/Tevet 5 5765, Vol. 57, No.16
Genetic disease project begins
STEPHANIE N. HENSCHEL
Staff Writer
An initiative is underway to educate the largely Ashkenazic Jewish community about the prevalence of certain genetic diseases and the importance of carrier screenings.
Andi and Sherman Minkoff have collaborated with several nonprofit agencies in the community - including Council for Jews with Special Needs, Jewish Family and Children's Service, the Deustch Family Shalom Center of Temple Chai and the Young Leadership Division of the Jewish Federation of Greater Phoenix - to launch the Jewish Genetic Diseases Project.
The project, which began by disseminating information to doctors and rabbis to generate interest, is aimed at those of "child-bearing years." Its purpose is to raise awareness of Jewish genetic diseases and to provide affordable screenings.
A letter sent out by the Minkoffs Dec. 1 explained why the issue was an important one. One in 25 Ashkenazic Jews is a carrier of the Tay Sachs gene; one in 40 is the carrier of the Canavan gene; and, if both parents are carriers, a newborn has a 25 percent chance of being afflicted with one of four prevalent fatal diseases.
In fact, even the American College of Obstetrics and Gynecologists has recommended that Ashkenazic Jews be screened for those diseases, as well as Cystic Fibrosis and Familial Dysautonomia.
But screenings can be very expensive. One test panel for these four diseases can run up to $350, according to Sherman Minkoff.
He said that during the 1970s, there were many screening days in the area. But they have since fallen "under the radar."
Other communities have organized mass screenings, he said. "We thought that it was appropriate to look at that."
So Minkoff and his wife, who were recently awarded the Tree of Life award from Jewish National Fund, spoke with the collaborative agencies to see if they would be interested in creating such a thing.
As luck would have it, they were.
"We've all now come together and created this program," Minkoff said.
Moving to the second step of the project, Minkoff explained, means creating a program that the community can get involved in.
So the group organized a screening day, to be held April 3. Medical and genetic experts will make presentations about the different diseases and how the screening process works. Screenings will be offered, for a nominal price.
As the expense for the screenings is a bit burdensome, Minkoff and his collaborators hope to raise the necessary funds. So far, more than $40,000 has been raised through the Jewish Community Foundation, St. Joseph's Hospital and Medical Center and anonymous donations. The goal is to raise $25,000 more.
"The more money we can raise, the more people we can screen," Minkoff said.
Minkoff said he also hopes the program will continue on an annual basis.
To make a donation to the project, send a check, payable to Jewish Family and Children's Service, to Susan Aceves at JFCS, 4220 N. 20th Ave., Phoenix 85015. Indicate the donation is for the Jewish Genetic Disease Project. Call 480-209-1952.
Contact the writer here
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