SALUTE TO THE HIGH SCHOOL GRADUATES OF 2016 > P. 42 Volume XV Number 10 Volume COMMUNITYSivan - Tammuz 5776 July 2016 Safeguarding Jews From Genetic Disease: DOR YESHORIM EXPANDS TO THE SEPHARDIC COMMUNITY THE BLIND FAITH A Tribute to Red Nesser – CONUNDRUM The Ultimate Team Player WORDS OF Dave Gordon RABBI ELI J. MANSOUR 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 mutations. 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 by a 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 Brooklyn, 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 shidduch, 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 genetic testing 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 Israel, believes that the dearth about the addition of its Sephardic testing l’tzlan, were born with genetic disorders.