Jewish World Review /May 5, 1999 / 19 Iyar, 5759

Barbara Krasner-Khait

The making of
a genetic sleuth

THERE IS NOTHING EXTRAORDINARY about the graves of immigrants David and Fanny Lustig in Forest Park's Waldheim Cemetery. Buried in 1938 and 1941 respectively, they seem lost, hidden away in one of 300 cemeteries, two people out of 200,000 laid to rest in Waldheim's 350 acres.

But there is indeed something extraordinary about the couple interred there.

David and Fanny were first cousins who married, and unknowingly passed the Beta-Thalassemia trait -- an inherited form of anemia --on to their children. (the marrying of first-cousins is permitted by Jewish Law)

Now the many carriers among their descendants must be on guard: the offspring of two carriers have a 25 percent chance of inheriting the fatal form of the disease, Thalassemia Major, which causes death before adulthood.

David and Fanny's grandson, 80-year old Alex Lustig of Wilmette, Illinois, is listed by the cemetery as the person responsible for the graves. Lustig was diagnosed as a Beta-Thalassemia carrier by his personal doctor, a hematologist, some 15 years ago. While Beta-Thalassemia is fairly common among people of Mediterranean, Middle Eastern, Far Eastern, and to a lesser extent even Sephardic Jews, it has been rarely seen among Ashkenazim.

Lustig's family came from the town of Ostrow Mazowiecka ("Ostrova"), Poland, in the former Pale of Settlement.

THE PRECIOUS NETWORK OF A FAMILY
Five years ago, Dr. Charles Scriver at the McGill University Montreal Children's Hospital Research Institute determined that local businessman Stanley Diamond is a carrier of a unique mutation of the trait.

Also with roots in Ostrova, Diamond has been unrelenting in his search for other carriers and has became a driving force in Jewish genealogy as a result.

President of the Montreal Jewish Genealogical Society and Coordinator of the Internet-based Jewish Records Indexing - Poland Project, he founded the Ostrow Mazowiecka Research Family, which now has more than 50 members around the world.

Early in 1998 a California member of this research family gave Diamond a partial map of Waldheim's Ostrover Verein plot --- the map given her by the cemetery office to find the graves of her Dunn family relatives.

When Diamond, also interested in the Dunn family, spotted the names of David and Fanny Lustig on the map, he quickly surmised that they were the American equivalent names assumed by Dawid Lustig and his wife, Frajda Bengelsdorf. David and Fanny were the children of sisters Feyga and Chaya Widelec, and nephew and niece of Diamond's great-grandfather, Yankiel Widelec.

Knowing that both may have inherited the Beta-Thalassemia trait, a potential catostrophe for their children, Diamond had been searching for their gravestones and family for three years.

Diamond verified the couple's identity with Lori Hanff, Waldheim's Family Services and Preplanning Manager, and shared details of his research. Understanding the importance of the request, Hanff confirmed the fathers' given names on the stones, and Diamond learned that a Mr. Alex Lustig took care of some of the Lustig family graves.

Says Diamond, "Fortunately, I was able to quickly locate the telephone number for the only Alex Lustig in the Chicago area. I immediately called and followed up with documentation about the family history and my genetic research. When I mentioned I would be in Phoenix the following week, Alex urged me to call his son, Steven, a resident of the area, which I did the first day. I am so glad I did!"

TRACING A COMMON ANCESTOR
Alex faxed Diamond's information to Steven, who delivered the news in person to Diamond: the Lustig family also carries the Beta-Thalassemia trait. "I started to shake," says Diamond. Luckily, Alex's second cousin, Dr. James Lustig of Akron, Ohio, has been tracking and warning that part of the family. Dr. Lustig has now picked up the gauntlet and has become actively involved in locating and warning other distant branches of the Lustig family.

Upon finding these Lustig cousins, Diamond dashed off an excited E-mail message to Dr. Scriver and Hebrew University-Hadassah Hospital's Dr. Ariella Oppenheim, both of whom have been following the trait among Ashkenazim.

The discovery that David and Fanny's descendants were carriers of the Beta-Thalassemia trait convinced Diamond and these two geneticists that common ancestor Hersz Widelec, born in 1785, must be the source of the family's novel mutation. Diamond had now provided the scientists with the greatest number of generations ever reconstructed in the study of the Beta-Thalassemia trait in a clean gene pool.

BREAKING THE CHAIN OF DISEASE
This groundbreaking work helps geneticists all over the world understand the trait and its effects on one family. Says Dr. Oppenheim, "A most important contribution of Stanley Diamond's work is increasing the awareness among his relatives and others to the possibility that they carry a genetic trait which, with proper measures, can be prevented in future generations. In addition, the work has demonstrated the power of modern genetics in identifying distant relatives, and helps to clarify how genetic diseases are being spread throughout the world."

Thanks to the Waldheim Cemetery records, Alex Lustig was quickly found. "I gave Stan as much information as I knew," he says very modestly, unaware of the contribution he has made to genetic research.

VALUE OF CEMETERY RECORDS FOR SCIENCE AND GENEALOGY
What makes the cemetery records so valuable is that they provide much more current information than the records accessible from Polish archives. They provide the link between living families and immigrant ancestors.

As Diamond asserts, "That is why Waldheim's Ostrover Section was so important to me and why burials in all Jewish cemeteries are of potential importance for scientific research as well as conventional genealogical study and familyreunification."

Waldheim is managed by three superintendents, only one of whom has computerized decedent information. Says Hanff, "Every day I get calls. I can't even tell you how many. It gets really busy between Pesach and Sukkot. We can help someone with one or two names quickly. If the request entails more than that, the caller should write to the cemetery."

From the database, callers like Diamond are able to learn which funeral home made the arrangements, who is responsible for care of the grave, as well as date of death. Fortunately for Diamond, the Lustigs, and Beta-Thalassemia research, the Ostrover Verein is included in this database.

NEED FOR SITE MAPS
Unfortunately, site maps run against Waldheim's policy, but other linkages to the disease can be made. Without seeing the Lustig names in the tailored map passed on to him, Diamond's search for Beta-Thalassemia trait carriers could not have broken through a very frustrating impasse.

For more information about Diamond's research, you may access his Web site by clicking here.

For more information about Jewish Records Indexing - Poland, an Internet-based project that has already indexed 500,000 Jewish birth, marriage, and death records from more than 100 Polish shtetls, towns, and cities, click here.