Safeguarding Jews From Genetic Disease: DOR YESHORIM EXPANDS TO THE SEPHARDIC COMMUNITY
By: Meira Bauman
Thirty years ago, genetic disease was a taboo topic – a reality which added even more heartache to already suffering families. While today, the words “genetic disease” are still associated with tremendous pain and anguish, no longer is the fear of stigma a factor. That’s all due to one courageous individual, Rabbi Josef Ekstein, who, after, rachmana l’tzlan, losing four children to Tay Sachs disease, set out on a heroic mission to build a fortress of education, prevention and research around genetic disease. Its name? Dor Yeshorim.
Despite the noble cause it was built to serve, Dor Yeshorim did not have an easy start. Rabbi Ekstein’s mission to ensure that not a single child in Klal Yisrael would struggle with genetic disease was met with resistance at first. People knew so little about the concept and feared what they didn’t understand. For these reasons, they were reluctant to let Dor Yeshorim into their lives.
Yet, Rabbi Ekstein, with superhuman strength, stamina and determination, forged forward in his mission to safeguard the health of Klal Yisrael’s future generations. With much dedication, he sought the haskama (encouragement) of Gedolim and lay leaders alike, across many communities. He wanted, Dor Yeshorim to become an entity that could help all Jews, across every denomination. Eventually, he hoped to eliminate genetic diseases from Klal Yisrael for good.
“As Jews, we’ve undergone many challenges and hardships throughout the long years we’ve endured in galut,” Rabbi Ekstein said. “Yet, when a parent loses a child, rachmana l’tzlan, a nightmare I wish on no one, that is the most painful experience of all. It’s a tragedy I fervently hope and pray that no other parent should ever have to undergo. Especially not if it’s one that, with a minimum effort of hishtadlut, could easily be prevented.”
When Rabbi Ekstein’s firstborn son turned just six months old, he began to display signs of extremely delayed development. After their regular pediatrician was unable to label the cause, Rabbi Ekstein and his wife began to visit other professionals, each of whom could not pinpoint the source of their baby’s symptoms. Panic-stricken, Rabbi Ekstein and his wife began a long and arduous journey, going from doctor to doctor, in search of a diagnosis and a cure for their precious baby. After months of heart-rending agony in the face of the unknown, they were finally given a proper diagnosis: Tay Sachs disease.
“That very minute when we first received the diagnosis from the medical experts,” explained Rabbi Ekstein, “was the first time that my wife and I had ever heard of the words ‘Tay Sachs.’ From that moment on, what was once a carefree and happy parenthood evolved into a frightening maze of medical visits, with us in and out of hospitals and facilities, watching our precious little boy regress.
“A short while later, Hashem entrusted a beautiful baby girl into our hands. Yet, our blissful joy at the birth of our second precious neshama was short-lived, as she, too, began showing those all-too familiar signs of regression that we knew only so well from our son.
“Our third child was, baruch Hashem born a completely healthy baby and did not experience any of the same symptoms of her older siblings. But her next two siblings were also diagnosed with the same debilitating and fatal disease that their oldest brother and sister were suffering from.”
During this time, the resources and research available on genetic disease in general and Tay Sachs, in particular were primitive at best. Hundreds of families were experiencing heartbreaking anguish as they gave birth to children with Tay Sachs. With nowhere to turn to ease their burden and relieve some of their pain, these families chose to remain quiet about this genetic disease, so they would not be stigmatized and denied shidduchim for their healthy children.
Rabbi Ekstein knew it was time to create massive change in the way genetic disease was researched and regarded. He is of the firm belief that if “something that can be avoided, why not avoid it?” Not wanting others to experience the unspeakable tragedies that he underwent, Rabbi Ekstein, together with other dedicated individuals, began to develop the blueprints for the entity that, today, is Dor Yeshorim.
To date, Dor Yeshorim is responsible for preventing over 4,760 families in Klal Yisrael from, rachmana l’tzlan, having children born with genetic disease. This organization, under the expert leadership and guidance of Rabbi Ekstein, the Rabbinical and medical advisory board and HaKadosh Baruch Hu, has helped to eliminate Tay Sachs and many other debilitating genetic diseases from the Jewish community worldwide.
In fact, in light of Dor Yeshorim’s lifesaving work, the Tay Sachs ward at Kingsbrook Jewish Medical Center in Brooklyn, New York, once one of the largest Tay Sachs wards in the world, has closed its doors for good, due to a complete lack of admissions. The Director of Pediatrics at Kingsbrook Jewish Medical Center, Dr. Hua-Chin Chen, wrote a heartfelt letter to Rabbi Ekstein, thanking him for his tireless work in eradicating this disease. “I just wanted to write you a final chapter regarding [the] Tay Sachs disease,” the letter read in part. “Through your aggressive genetic testing system to prevent this serious medical problem, we have eliminated this disease. Our last Tay Sachs patients passed away five years ago and there have been no admissions since. I am grateful for your success and the support of the Jewish communities.”
Dor Yeshorim constantly seeks to reproduce and multiply its existing successes so as to prevent even more agony and suffering from pervading Klal Yisrael’s families. It heavily invests in ongoing genetic research to ensure that this dream remains a reality. In so doing, it has become responsible for the identification of numerous disease-causing genetic mutations. Dor Yeshorim’s acclaimed and proven premarital genetic screening program, of thirty-three years, is the most successful of its kind in the world! To date, Dor Yeshorim has tested more than 427,500 individuals. Under the direction of the Gedolei Hador, each individual that Dor Yeshorim tests is identified throughout the process by a unique, nine-digit identification number.
As part of its strict confidentiality policy, Dor Yeshorim does not reveal the carrier status of any testee. This, in turn, helps reduce the heartache and stigma that comes along with the knowledge that one is a carrier of genetic disease. It also helps provide much-needed peace of mind to individuals going through the shidduchim process, who fear being a carrier of genetic disease.
Dor Yeshorim screens tens of thousands of young men and women in 400 schools across the globe, making the genetic screening process simple for these individuals. More than 25,000 individuals are tested and close to 23,000 compatibility results are facilitated each year, through its highly efficient system.
The premarital genetic screening program proceeds as follows: After a blood sample is drawn, each testee within the couple is given an identification number. Then, before meeting again, they exchange ID numbers, keying the information into Dor Yeshorim’s automated system. Within a few hours, Dor Yeshorim calls them back with the results. If their genetic makeups are compatible, the couple may proceed with the shidduch, secure in the knowledge that they will not have children affected with the genetic diseases in question. If, unfortunately, they were not found to be compatible genetically, Dor Yeshorim will advise the couple on the dangers of continuing with the match and offer support and guidance, as needed.
Dor Yeshorim encourages those it screens to check shidduch compatibility before a couple meets for the first time – because, of course, incompatibly is much harder to bear after an emotional connection has been established.
Dor Yeshorim does not for one moment forget who its incredible and lifesaving work is for - the individual members of Klal Yisrael. It aims to provide the utmost peace of mind to our communities, doing all it can to assist families of children who, rachmana l’tzlan, were born with genetic disorders. Dor Yeshorim has become the go-to source for any genetic question or referral request, providing professional, compassionate and sensitive guidance.
On an ongoing basis, Dor Yeshorim conducts groundbreaking genetic research. Its dedicated team of researchers works together with each family to painstakingly identify its genetic mutation. They then develop reliable testing protocols to ensure that preventative measures are put in place. The earlier a family calls, the more time Dor Yeshorim has to develop methods to safeguard the health and shidduchim potential of their future children.
ITS SEPHARDIC ADDITION
Recently, Dor Yeshorim began to expand its reach, launching a Sephardi genetic screening initiative that tests for genetic diseases that are commonly found among the Sephardic community. Many people have the misconception that genetic diseases are something that only affect the Ashkenazic community. Yet, that is not the truth. In recent years, many families from the Sephardic community began reaching out to Dor Yeshorim for genetic assistance, as they, too, gave birth to children with fatal and debilitating genetic diseases, rachmana l’tzlan.
In the past, very little research had been done regarding Sephardic genetic diseases. And so, a couple of years ago, Dor Yeshorim began the process of conducting groundbreaking genetic research. The goal was to develop a comprehensive testing panel that would test Sephardim for the genetic diseases that they are susceptible to, in the hopes of eliminating the recurrence of genetic disease from the Sephardic community, as well.
Dr. Ohad Birk, the head of the Genetics Institute at Soroka Medical Center, located in Be’er Sheva in Israel, believes that the dearth of research done around Sephardic genetic diseases is partially due to the fact that the genetic dynamics of the Sephardim are more complex than those of Ashkenazim. While Ashkenazim hail from various countries, they are all susceptible to the same genetic diseases. Sephardim, however, will have different genetic diseases and mutations depending on their country of origin. This adds an additional layer of complexity when setting up a panel for genetic testing
Recently, after investing many resources and much time into this facet of the organization, Dor Yeshorim unveiled a panel that screens for thirteen additional genetic diseases that are prevalent in non-Ashkenazic communities. It should be said, however, that certain genetic diseases that are on Dor Yeshorim’s Ashkenazic panel can also be found among those of Sephardic descent, including Tay Sachs and cystic fibrosis. Additionally, a Sephardic individual with Ashkenazic blood from a few generations back, can also be a carrier for Ashkenazic genetic diseases. This is why couples of mixed origin sometimes give birth to a child with Tay Sachs, rachmana l’tzlan. There are also genetic diseases found only among Sephardim. Because of these possibilities, it’s imperative that all Sephardim be screened for genetic diseases, whether they’ve coupled with another Sephardi, or with an Ashkenazi individual.
Those who joined the Dor Yeshorim program after January of 2016 and indicated that they are of Sephardic descent, were automatically screened for both Dor Yeshorim’s Ashkenazic and Sephardic panels. Those who were tested by Dor Yeshorim before this time period should call the Dor Yeshorim office to update their information. An additional blood specimen is not needed, in most cases.
Since Dor Yeshorim’s announcement about the addition of its Sephardic testing panel, many Rabbanim and leaders, both of Sephardic and non-Sephardic denominations, have embraced the development. In May of 2015, Hacham Yitzchak Yosef, shlita, the Rishon L’Tzion of Eretz Yisrael and Av Bet Din of the Chief Rabbinate of Israel Supreme Bet Din, called upon all Sephardim to be tested for genetic inconsistencies. They insisted that testing our children for genetic compatibility before they embark on marriage can, and will, help them to avoid the problems that can potentially arise if they do not screen beforehand.
Recently, in December of 2015, Gedolei HaDor and Roshei Yeshiva from the Sephardic communities in Israel released a Kol Koreh. The announcement stated that, before getting engaged, every single Jew, regardless of whether they are of Ashkenazic of Sephardic descent, should get tested by Dor Yeshorim to ensure the compatibility of the shidduch. Dor Yeshorim is now working tirelessly with the Rabbanim and community leaders abroad to help establish this lifesaving initiative so that it can continue protecting the futures of all Jewish communities.
Dor Yeshorim is an international nonprofit organization that is dedicated to the prevention of Jewish genetic diseases. Dor Yeshorim conducts screenings at locations all over the world, spearheads ongoing and groundbreaking genetic research and assists families that currently have children who are affected with rare genetic diseases. For more information about Dor Yeshorim’s programs or if you have any genetic-related questions, please contact them at: (718) 384-6060, email info@DorYeshorim.org or visit their website at www.DorYeshorim.org.