COMMUNITY SEPHARDIC COMMUNITY SEPHARDIC SALUTE TO THE HIGH SCHOOL GRADUATES OF 2016 > > 2016 OF GRADUATES SCHOOL HIGH THE TO SALUTE From Genetic Disease: FromGenetic Safeguarding Jews Safeguarding EXPANDS TO THE THE TO EXPANDS DOR YESHORIM YESHORIM DOR The Ultimate Team Player Ultimate The A Tribute to Red Nesser – – Nesser Tribute Red to A Dave Gordon Dave P.42 RABBI ELI J. MANSOUR J. ELI RABBI Sivan -Tammuz 5776July2016 THE BLIND FAITH BLIND THE CONUNDRUM WORDS OF WORDS

Volume XV Number 10 MEIRA BAUMAN

Safeguarding Jews From Genetic Disease: DOR YESHORIM EXPANDS TO THE Fresh SEPHARDIC COMMUNITY Defined

ITS FOUNDING the health of Klal Yisrael’s future of their baby’s symptoms. Panic-stricken, Thirty years ago, genetic disease was a generations. With much dedication, he Rabbi Ekstein and his wife began a long taboo topic – a reality which added even sought the haskama (encouragement) of and arduous journey, going from doctor more heartache to already suffering families. Gedolim and lay leaders alike, across many to doctor, in search of a diagnosis and a While today, the words “genetic disease” communities. He wanted, Dor Yeshorim to cure for their precious baby. After months are still associated with tremendous pain become an entity that could help all Jews, of heart-rending agony in the face of the and anguish, no longer is the fear and across every denomination. Eventually, he unknown, they were finally given a proper stigma of the disease a debilitating factor. hoped to eliminate genetic diseases from diagnosis: Tay Sachs disease. That’s all due to one courageous individual, Klal Yisrael for good. “That very minute when we first received Rabbi Josef Ekstein, who, after, rachmana “As Jews, we’ve undergone many the diagnosis from the medical experts,” l’tzlan, losing four children to Tay Sachs challenges and hardships throughout the explained Rabbi Ekstein, “was the first disease, set out on a heroic mission to build long years we’ve endured in galut,” Rabbi time that my wife and I had ever heard of a fortress of education, prevention and Ekstein said. “Yet, when a parent loses the words ‘Tay Sachs.’ From that moment research around genetic disease. Its name? a child, rachmana l’tzlan, a nightmare I on, what was once a carefree and happy that Dor Yeshorim. wish on no one, is the most painful parenthood evolved into a frightening Reservations Seating from experience of all. It’s a tragedy I fervently maze of medical visits, with us in and out At Estreia, we recognize that locally-grown produce adds an Despite the noble cause it was built to 732.994.7878 5:00pm to 10:30pm serve, Dor Yeshorim did not have an easy start. hope and pray that no other parent should of hospitals and facilities, watching our entirely new dimension to the dining experience. Taste the crisp, [email protected] Sunday - Thursday Rabbi Ekstein’s mission to ensure that not a ever have to undergo. Especially not if precious little boy regress. garden freshness of our farm-to-table ingredients. single child in Klal Yisrael would struggle with it’s one that, with a minimum effort of “A short while later, Hashem entrusted hishtadlut, could easily be prevented.” a beautiful baby girl into our hands. Yet, 978 River Avenue View our complete menu genetic disease was met with resistance at Lakewood, NJ 08701 at www.estreia978.com first. People knew so little about the concept When Rabbi Ekstein’s firstborn son turned our blissful joy at the birth of our second You'll Understand the Difference. and feared what they didn’t understand. For just six months old, he began to display precious neshama was short-lived, as she, these reasons, they were reluctant to let Dor signs of extremely delayed development. too, began showing those all-too familiar Yeshorim into their lives. After their regular pediatrician was unable signs of regression that we knew only so Yet, Rabbi Ekstein, with superhuman to label the cause, Rabbi Ekstein and his well from our son. strength, stamina and determination, wife began to visit other professionals, each “Our third child was, baruch Hashem forged forward in his mission to safeguard of whom could not pinpoint the source born a completely healthy baby and did Supervised by the KCL - Mashgiach Temidi 30 COMMUNITY MAGAZINE not experience any of the same symptoms ITS PROGRAMS of her older siblings. But her next two Dor Yeshorim constantly seeks to siblings were also diagnosed with the reproduce and multiply its existing same debilitating and fatal disease that successes so as to prevent even more their oldest brother and sister were agony and suffering from pervading suffering from.” Klal Yisrael’s families. It heavily invests ITS ROOTS in ongoing genetic research to ensure that this dream remains a reality. In During this time, the resources and so doing, it has become responsible research available on genetic disease in for the identification of numerous general and Tay Sachs, in particular were disease-causing genetic . primitive at best. Hundreds of families Dor Yeshorim’s acclaimed and proven were experiencing heartbreaking anguish premarital genetic screening program, of as they gave birth to children with Tay Sachs thirty-three years, is the most successful of and other genetic diseases. With nowhere its kind in the world! To date, Dor Yeshorim to turn to ease their burden and relieve has tested more than 427,500 individuals. some of their pain, these families chose to Under the direction of the Gedolei Hador, remain quiet about this genetic disease, so each individual that Dor Yeshorim tests they would not be stigmatized and denied is identified throughout the process bya shidduchim for their healthy children. unique, nine-digit identification number. Rabbi Ekstein knew it was time to create As part of its strict confidentiality policy, Dor massive change in the way genetic disease Yeshorim does not reveal the carrier status was researched and regarded. He is of the of any testee. This, in turn, helps reduce the firm belief that if “something that can be heartache and stigma that comes along with avoided, why not avoid it?” Not wanting the knowledge that one is a carrier of genetic others to experience the unspeakable disease. It also helps provide much-needed tragedies that he underwent, Rabbi Ekstein, peace of mind to individuals going through the together with other dedicated individuals, shidduchim process, who fear being a carrier of began to develop the blueprints for the genetic disease. entity that, today, is Dor Yeshorim. Dor Yeshorim screens tens of thousands ITS IMPACT of young men and women in 400 schools across the globe, making the genetic To date, Dor Yeshorim is responsible screening process simple for these for preventing over 4,760 families in Klal individuals. More than 25,000 individuals Yisrael from, rachmana l’tzlan, having are tested and close to 23,000 compatibility children born with genetic disease. This results are facilitated each year, through its organization, under the expert leadership highly efficient system. and guidance of Rabbi Ekstein, has helped The premarital genetic screening to eliminate Tay Sachs and many other program proceeds as follows: After a blood debilitating genetic diseases from the Jewish sample is drawn, each testee is given an community worldwide. identification number. Then, before a In fact, in light of Dor Yeshorim’s lifesaving couple meets, they exchange ID numbers, work, the Tay Sachs ward at Kingsbrook keying the information into Dor Yeshorim’s Jewish Medical Center in , New automated system. Within a few hours, York, once one of the largest Tay Sachs wards Dor Yeshorim calls them back with the in the world, has closed its doors for good, results. If their genetic makeups are due to a complete lack of admissions. The compatible, the couple may proceed with Director of Pediatrics at Kingsbrook Jewish the , secure in the knowledge Medical Center, Dr. Hua-Chin Chen, wrote that they will not have children affected a heartfelt letter to Rabbi Ekstein, thanking with the genetic diseases they tested for. him for his tireless work in eradicating this If, rachmana l'tzlan, they were not found disease. “I just wanted to write you a final to be compatible genetically, Dor Yeshorim chapter regarding [the] Tay Sachs disease,” will advise the couple on the dangers the letter read in part. “Through your of continuing with the match and offer aggressive system to prevent support and guidance, as needed. this serious medical problem, we have Dor Yeshorim encourages those it eliminated this disease. Our last Tay Sachs screens to check shidduch compatibility patients passed away five years ago and before a couple meets for the first time there have been no admissions since. I am – because, of course, incompatibly is grateful for your success and the support of much harder to bear after an emotional the Jewish communities.” connection has been established.

32 COMMUNITY MAGAZINE ITS FAMILIES was to develop a comprehensive testing screened for both Dor Yeshorim’s Ashkenazic panel that would test Sephardim for the genetic and Sephardic panels. Those who were tested Dor Yeshorim does not for one moment diseases that they are susceptible to, in the by Dor Yeshorim before this time period should forget who its incredible and lifesaving hopes of eliminating the recurrence of genetic call the Dor Yeshorim office to update their work is for - the individual members of Klal disease from the Sephardic community, as well. information. An additional blood specimen is Yisrael. It aims to provide the utmost peace Dr. Ohad Birk, the head of the Genetics not needed, in most cases. of mind to our communities, doing all it can Institute at Soroka Medical Center, located in Since Dor Yeshorim’s announcement to assist families of children who, rachmana Be’er Sheva in , believes that the dearth about the addition of its Sephardic testing l’tzlan, were born with genetic disorders. of research done around Sephardic genetic panel, many Rabbanim and leaders, both of Dor Yeshorim has become the go-to source diseases is partially due to the fact that the Sephardic and non-Sephardic denominations, for any genetic question or referral request, genetic dynamics of the Sephardim are more have embraced the development. In May providing professional, compassionate and complex than those of Ashkenazim. While of 2015, Hacham Yitzchak Yosef, shlita, the sensitive guidance. Ashkenazim hail from various countries, Rishon L’Tzion of Eretz Yisrael and Av Bet Din On an ongoing basis, Dor Yeshorim they are all susceptible to the same genetic of the Chief Rabbinate of Israel Supreme Bet conducts groundbreaking genetic research. Its diseases. Sephardim, however, will have Din, called upon all Sephardim to be tested dedicated team of researchers works together for genetic inconsistencies. They insisted that with each family to painstakingly identify its testing our children for genetic compatibility genetic . They then develop reliable before they embark on marriage can, and

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...

Letter from Hacham Yitzhak Yosef. Approval of Hacham Ovadiah Yosef, A"H.

will, help them to avoid the problems testing protocols to ensure that preventative different genetic diseases and mutations that can potentially arise if they do not measures are put in place. The earlier a family depending on their country of origin. This screen beforehand. calls, the more time Dor Yeshorim has to adds an additional layer of complexity when Recently, in December of 2015, Gedolei develop methods to safeguard the health and setting up a panel for genetic testing HaDor and Roshei Yeshiva from the Sephardic shidduchim potential of their future children. Recently, after investing many resources and communities in Israel released a Kol Koreh. ITS SEPHARDIC ADDITION much time into this facet of the organization, The announcement stated that, before getting Dor Yeshorim unveiled a panel that screens for engaged, every single Jew, regardless of whether Recently, Dor Yeshorim began to expand thirteen additional genetic diseases that are they are of Ashkenazic of Sephardic descent, its reach, launching a Sephardi genetic prevalent in non-Ashkenazic communities. It should get tested by Dor Yeshorim to ensure the screening initiative that tests for genetic should be said, however, that certain genetic compatibility of the shidduch. Dor Yeshorim is diseases that are commonly found among diseases that are on Dor Yeshorim’s Ashkenazic now working tirelessly with the Rabbanim and the Sephardic community. Many people have panel can also be found among those of community leaders abroad to help establish the misconception that genetic diseases are Sephardic descent, including Tay Sachs and cystic this lifesaving initiative so that it can continue something that only affect the Ashkenazic fibrosis. Additionally, a Sephardic individual with protecting the futures of all Jewish communities. community. Yet, that is not the truth. In recent Ashkenazic blood from a few generations back, years, many families from the Sephardic can also be a carrier for Ashkenazic genetic Dor Yeshorim is an international nonprofit organization community began reaching out to Dor diseases. There are also genetic diseases found that is dedicated to the prevention of Jewish genetic Yeshorim for genetic assistance, as they, too, only among Sephardim. Because of these diseases. Dor Yeshorim conducts screenings at locations all gave birth to children with fatal and debilitating possibilities, it’s imperative that all Sephardim over the world, spearheads ongoing and groundbreaking genetic diseases, rachmana l’tzlan. be screened for genetic diseases, whether genetic research and assists families that currently have In the past, very little research had they’ve coupled with another Sephardi, or with children who are affected with rare genetic diseases. For been done regarding Sephardic genetic an Ashkenazi individual. more information about Dor Yeshorim’s programs or if you diseases. And so, a couple of years ago, Dor Those who joined the Dor Yeshorim program have any genetic-related questions, please contact them Yeshorim began the process of conducting after January of 2016 and indicated that they at: (718) 384-6060, email [email protected] or visit groundbreaking genetic research. The goal are of Sephardic descent, were automatically their website at www.DorYeshorim.org.

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