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בס"ד Summer 2017 OffspringsA Family Health & Wellness Magazine Featured inside! Uncovering A Genetic Mystery Pre-Marital Genetic Testing Not Just for Ashkenazim Passion & Commitment a Letter from Rabbi Ekstein A Qwith& the A Project of: ShadchanSee Page 10 Dor Yeshorim: Eliminating the incidence of fatal & debilitating recessive genetic diseases & assisting families who have children affected with genetic disorders. from Letter the Founder True passion and Thanks to Hakadosh Baruch Hu, our ground- breaking efforts have B”H made it possible to test for, and thereby eradicate numerous Commitment...” fatal and or debilitating recessive genetic disease prevalent in our communities as well Dear Friends, as many that are found in the Sephardic communities. Sephardim, who unfortunately “Help me help your children.” This is the are also susceptible to genetic disease, can prayer the Dor Yeshorim researchers, now receive testing for those diseases most professors, doctors, lab technicians, the prevalent in the Sephardic population. outreach and development teams and myself say whenever we are working. With Hashem’s Utilizing our experienced team of geneticists help, Dor Yeshorim has been able to make a and years of research and development, Dor tremendous impact on Jewish families across Yeshorim helps identify and develop testing the globe. From helping extinguish common for rare mutations to ensure the disease is genetic diseases within the Jewish nation, stopped in its tracks. We develop case-specific to assisting families suffering from rare or familial testing and screening to help save unidentified genetic diseases we take our hundreds of families from future despair. work very seriously and continue our efforts In addition to Dor Yeshorim’s well-known to ensure B’ezras Hashem the health of future premarital genetic screening program, we generations. offer support for families suffering from The continued support for Dor Yeshorim the anguish of a genetic disease. We offer from Jews around the world has given me guidance and aid in the form of medical an unbelievable sense of appreciation and an referrals, financial assistance, genetic even stronger motivation to aid in all aspects education and more. Dealing with a family of genetic disease prevention. member stricken by a disease is a difficult proposition as it is. We do everything in our power to make life easier, while preventing any more damage. As we continue to invest tremendous resources to ensure we provide the most DorYeshorim.org reliable and cost-effective genetic testing, our hope is that the true passion and US HEADQUARTERS commitment of our organization shines bright. 309 Rutledge Street Brooklyn, NY 11211 Sincerely, 718-384-6060 [email protected] osef Ekstein ISRAEL HEADQUARTERS Y Founder, Dor Yeshorim Rechov Hamarpeh 5 Har Hotzvim Jerusalem, 91506, Israel 718.384.6060 • 309 Rutledge Street, Brooklyn, N.Y. 11211 Office (02) 649-9888 בס"ד When Eli and Dina For 33 years, Dor Yeshorim had three children has worked tirelessly to eliminate the fear and diagnosed with a rare confusion that is caused by genetic disorder, harmful genetic disorders. they didn’t know Utilizing advanced research what to do. and development, we aim to They turned to us identify the disease-causing mutation and develop for help. testing in order to prevent debilitating diseases from reoccurring. We firmly stand with those affected and do everything in our power to help guide and assist individuals and their families towards the proper solutions. When there are no answers, Dor Yeshorim is the answer. To learn more about Dor Yeshorim, call 718.384.6060 or visit DorYeshorim.org DorYeshorim.org / 718.384.6060 / Summer 2017 3 Offsprings Cover Story Protecting Uncovering the Klal while A never losing Genetic site of the individual MysteryBy Shoshana Bernstein Nothing can ever truly prepare a After two perfectly healthy children, the double occurrence was a clear indicator that something was seriously wrong, especially considering that parent for the heartache and hardship there were other extended family members whose children were born with of a child born with a severe handicap. similar symptoms. For the Perlowski* family this was Along with the challenges of raising children who cannot see, came an especially true when their third and increasing concern as the older, sighted children reached marriageable age. “Shidduchim is a difficult enough parsha to begin with,” worried Mrs. then their fourth child were born with Perlowski. “Will anyone want to marry into our family?!” a severe vision impairment. They were Night after night she tossed and turned, contemplating the future. “Our told that the condition in unfortunately family is so wonderful! Everyone is well adjusted and happy. I can’t let shidduchim ruin that!” Determined, Mrs. Perlowski picked up the phone and known to degenerate and in many made the call that would change everything. She called Dor Yeshorim. cases, cause complete blindness. Unbeknownst to many, Dor Yeshorim, the preeminent premarital genetic screening organization, is also the premier worldwide source of information, guidance, and research when it comes to genetic conditions. Rabbi Ekstein, the founder, simply cannot rest when he hears of children suffering from genetic diseases. His mission of healthy generations, developed from his personal devastating loss of four children to Tay Sachs, has never wavered. “When he knows that there’s a sick child out there, it impacts him personally,” remarks Dr. Berish Y. Rubin, Ph.D. Professor, Department of Biological Sciences, at Fordham University. After assuring the family that they would remain at their side every step of the way, Dor Yeshorim invited the parents to meet with 4 Offsprings us in the New York headquarters. We cause of the disease. Their help could took a detailed history and discussed well provide the answers that would save the concerns at hand. The information future generations from blindness. provided, coupled with the knowledge that extended family members also We Found the Gene! suffered from severe vision impairment, Three months later, Mrs. Perlowski Dor Yeshorim provides guidance led Rabbi Ekstein and his team to answered her ringing phone. “We found and support to families concerned strongly suspect that there was indeed a the mutation!” exclaimed Rabbi Ekstein with or affected by genetic genetic component at play. with joy. Finding the answer had taken hours and hours of intense and extremely disease. We suspected that the children were costly research and analysis, done Whether it is in the form of affected with Achromatopsia, a disease with the most sophisticated laboratory medical referrals, genetic that is known to cause blindness. equipment available. The results showed education, financial assistance or However, after testing blood samples that the extended family had a rare and answers to questions regarding from both parents as well as their two hitherto undocumented mutation causing shidduchim, Dor Yeshorim is children, the results were surprising: no the blindness. one was a carrier for any of the known a vital source of information mutations for Achromatopsia! Knowing the exact mutation meant that and care when navigating Dor Yeshorim now had the information the emotional and physical The lack of positive proof of a disease is needed to develop case-specific genetic challenges of genetic disease. usually good news. Not in this case. No testing. This tailor-made test will allow definitive results presented a complicated the healthy Perlowski siblings and relatives challenge. Without a clear cause of the to enter into shidduchim with peace of disease, we could not begin working on mind, knowing that Dor Yeshorim has 4,970 developing a reliable compatibility test the necessary means to ensure both parties that would enable the older children to are not carriers of the genetic mutation families proceed with shidduchim. causing the vision impairment. An individual can be born with a The story does not end there. multitude of genetic variations that are harmless, such as distinct eye or With the genetic mutation clearly defined, hair color, or a benign polymorphism, Dor Yeshorim is currently working have been spared from having variation in the DNA, which doesn’t with a group of professors researching children born with fatal or change anything in the body,” explains the option of gene therapy for this debilitating genetic diseases Yoel Hirsch of the genetic research gene, which could potentially stop the department at Dor Yeshorim. “The regression of the disease. The hope is challenge becomes pinpointing the cause that one day we can call the family and of the disease.” say: “We have unraveled the genetic 22,000 mystery and hopefully with hashem’s help We needed to conduct more extensive improve and/or stop the regression of couples testing to help figure out the underlying your children’s eyesight.” each year go under the chupah cause of the blindness. In order to do so, knowing that they did the we would need DNA samples from the Thanks to Dor Yeshorim and tremendous right hishtadlus for their healthy children in the family as well as siyata d’Shmaya, the Mr. and Mrs. future generations all the extended family members who had Perlowski were recently zoche to a history of the mysterious disease. This walk their two eldest children to the would better help us with identifying the chuppah, hearts brimming with simcha, You too can have the zechus of specific genetic mutation. anticipating the nachas they so rightfully deserve. Their feeling of immense relief saving Jewish children from the Dor Yeshorim contacted all the and joy fuels Dor Yeshorim’s ongoing devastation of genetic diseases by family members in question and with efforts on behalf of klal Yisroel. supporting Case Specific Research sensitivity and patience, we explained the and Development! complicated case and how pivotal their *names have been changed to protect DNA samples would be to untangle the the privacy of individuals.

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