DATE: Friday, May 16, 1997                  TAG: 9705160681

SECTION: LOCAL                   PAGE: B5   EDITION: FINAL 

SOURCE: BY PAT DOOLEY, STAFF WRITER 

DATELINE: NORFOLK                           LENGTH:   64 lines

TESTING TO BE OFFERED SUNDAY FOR GENE THAT CAUSES TAY-SACHS

The first local screening in 22 years to identify carriers of the deadly childhood disease Tay-Sachs will be from 10 a.m. to 4 p.m. Sunday at the Jewish Community Center of Tidewater.

Tay-Sachs is a genetic disorder that attacks the central nervous system of newborns. Most victims die by age 5.

It is most prevalent among Jewish people of Eastern European background, French Canadians and Cajuns, said Susan Becker, event co-chairman. In the United States, about one in 250 people is a carrier - a person who has the gene and can pass it on to offspring but who does not have the disease.

More than 800 people in South Hampton Roads are carriers and don't know it, said Becker, a Virginia Beach resident.

``People are under the misconception that Tay-Sachs has been cured,'' she said. Public awareness has fallen off, and testing is done less often. Sunday's screening is intended, in part, to educate people about the disease, she said.

There is no cure or treatment for Tay-Sachs, which destroys the brain and causes the body to gradually shut down.

But alternatives exist for couples identified as carriers, Becker said. Among them is screening embryos for the disease before implanting them in the uterus. The process was first used by doctors at Norfolk's Jones Institute for Women's Health in 1994. That baby, Brittany Nicole Abshire, is a healthy 3-year-old.

To produce a child with Tay-Sachs, both parents must be carriers. But if one parent has the gene, the child has a 50 percent chance of becoming a carrier.

Any at-risk person age 15 to 50 should attend the screening, which requires a blood test and takes about 10 minutes, Becker said. People who were adopted and do not know their ancestry also should consider testing. Pregnant women, however, require a different blood test.

``If you have a healthy child, don't take it for granted you're not a carrier,'' said Becker, who took up the cause after close friends gave birth to a Tay-Sachs baby, Bayli Atamian Zuck.

The 2 1/2-year-old, who lives in New York with her parents, recently was hospitalized with pneumonia, Becker said. The parents did not know they were carriers.

At Becker's urging, Gov. George F. Allen recently declared Sunday Virginia Tay-Sachs Awareness Day.

The local screening is co-sponsored by Eastern Virginia Medical School, the United Jewish Federation, the Hampton Roads Board of Rabbis and Jewish Family Services.

It is the model for a national screening Becker is organizing as chairman of the newly formed Tay-Sachs National Awareness Project.

That screening will be sometime next year, said Becker. She plans to ask President Clinton to proclaim a national Tay-Sachs Awareness Day.

``This is something I want to do,'' she said, ``to perpetuate Bayli.'' MEMO: For more information or to register for Sunday's screening, call

the local Tay-Sachs hot line at 489-8040, Ext. 590. ILLUSTRATION: Photo by MOTOYA NAKAMURA/The Virginian-Pilot

Susan Becker helped to organize a screening for carriers of

Tay-Sachs disease, a disorder that attacks the nervous system of

newborns. Behind Becker were her daughters Jennifer and Katie, in

hammock. KEYWORDS: TAY-SACHS

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