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COMMUNITY     E-mail story   Print story
Center fights scourge of genetic diseases
 
Carol Talmon is on a mission.

A medical laboratory technologist at St. Joseph's Hospital, she is sharing her expertise with the community for a fourth year as a volunteer collecting and labeling blood at the Jewish Genetic Diseases Center of Greater Phoenix screening.

"I have the capability and means to provide a very valuable service to my Jewish community," e-mailed Talmon, a longtime communal volunteer.

Talmon has been a member of St. Joseph's staff on hand each year, and the hospital, through its foundation, along with the Jewish Community Foundation, the Daron and Ron Barness Family Foundation, the March of Dimes, the Desert Foothills Jewish Community Association and Genzyme Corp., continues to help underwrite the testing. (Jewish News of Greater Phoenix is media partner for the event.)

A membership effort initiated this year also has helped to raise funds.

"I would love for the day to come when everyone will become aware and we no longer will have to watch the suffering of children and the families from these diseases," wrote Talmon.

The Jewish Genetic Diseases Center, founded in 2004 and incorporated in December 2006, is dedicated to heightening awareness, educating, and providing accessible and affordable testing to the local Jewish community for nine dread diseases prevalent among Jews of Ashkenazic background.

This year's testing will take place Sunday, March 30, at the Ina Levine Jewish Community Campus in Scottsdale.

According to the center's Web site, one in six Jewish individuals of Eastern European Ashkenazic descent is a carrier for a Jewish genetic disease. Couples in which both partners are carriers have a 25 percent chance in each pregnancy for the disease to surface. The diseases are either fatal in childhood or cause chronic disability and premature death.

Center founders Dr. Sherman and Andi Minkoff saw a need and responded by initiating a campaign to test Jews of child-bearing age.

Earlier screenings, begun in the 1970s, had gradually diminished. "It just was not on the community's radar," said Andi Minkoff.

The new center, in partnership with Council for Jews With Special Needs, Jewish Family & Children's Service, the Young Leadership Division of Jewish Federation of Greater Phoenix, Hadassah Valley of the Sun and the Valley of the Sun Jewish Community Center, has tested nearly 150 individuals at its annual event, and projects similar numbers for this year.

It has applied to the Jewish Community Foundation for a grant to organize a screening on the Arizona State University campus next fall. College students typify prime testing targets.

Lois Victor, who tragically lost two children to one of the genetic diseases and is a national advocate for testing through her three Victor centers, calls the Minkoffs "extraordinary people."

"Phoenix is lucky to have people like them," she said.

Others in the community have come forward in the campaign to prevent the occurrence of the diseases.

Marcia Weisberg, who has served on the board for the past two years, said having three healthy children of child-bearing age and three healthy grandchildren is a compelling reminder of the damage the diseases can cause.

"Jewish genetic diseases can potentially touch every Jewish family," responded Weisberg by e-mail, "and I have seen firsthand the devastation that Jewish genetic diseases can inflict." Weisberg has a great-niece with Gaucher's disease.

Online registration for the March screening includes educational information about the diseases and their impact and an online quiz for prospective participants.

This year's format seeks to streamline the educational components of the screening and reduce time for actual testing and requisite consultation with a genetic counselor.

Minkoff stresses that the focus of the center is prevention.

"Happy and healthy is what we want for everyone," she said.

    Details
  • Who: Jewish Genetic Diseases Center of Greater Phoenix
  • What: Education and Screening Event: screening for nine Jewish genetic diseases: Bloom syndrome, Canavan disease, cystic fibrosis, familial disautonomia, Fanconi anemia, Gaucher disease, mucolipidosis IV, Niemann-Pick disease, Tay-Sachs disease
  • When: 10 a.m.-4 p.m. Sunday, March 30
  • Where: Ina Levine Jewish Community Campus, 12701 N. Scottsdale Road, Scottsdale.
  • Cost: $50 for individuals ages 18-45; $300 for those over age 45.
  • Registration: Advance registration until March 26 at jewishgeneticsphx.org

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