Spring 2015 בס"ד

grassrootsA Family Health & Wellness Magazine Then & Now: Letter from the Founder Rabbi Yosef Ekstein Research & Findings Dr. Dvorah Abeliovich In The Words of Our Gedolim Facts & Figures: What You Never Knew about Dor Yeshorim Behind the Scenes: What DOES Dor Yeshorim with the do with my Q&A blood? Shadchan Featured inside! A Project of:

Dor Yeshorim: Eliminating the incidence of fatal and debilitating recessive genetic diseases1 and assisting families who have children affected with genetic disorders. from Letter the Founder in the MEDIAMEDIA If only that carriers only married non-carriers— I had known...” and by using anonymous “Dor Yeshorim, an Orthodox Jewish program using advanced molecular technology to Dear Fellow Jew: IDs, not screen young people considering marriage, was formed to enhance the effort to have I could not tell you how many times I have names, to healthy children by sparing potential partners the agony of conceiving genetically heard those words—spoken by broken­ avoid the defective children.” hearted young fathers and mothers sobbing unnecessary harm in anguish over the suffering and loss of their caused by stigmatizing individuals and their precious little babies. And I would know– families. it happened to me. Four awful times. “His screening program has spared thousands from the horror of his personal losses. Dor Yeshorim was founded in 1983, under Now Dor Yeshorim's Rabbi Yosef Ekstein braves the stem cell frontier." That’s why we founded Dor Yeshorim—so the guidance of Gedolei Yisroel represented that no one would ever have to go through by virtually every community in Klal Yisroel. such pain and anguish. Dor Yeshorim has performed close to 400,000 genetic blood screenings—sparing Consider our community’s situation 30 years over 4,200 families the horror of losing “Today, the number of children born with TaySachs in the Jewish community in the U.S. ago: The only way young adults seeking children and serving Klal Yisroel with reliable and Canada each year has dropped to between three and six from between 30 and 40.” partners in marriage would find out if they and proven relief. were Tay-Sachs carriers was by taking a voluntary genetic test. The screening available Today, Dor Yeshorim has expanded well then was unacceptable for Torah observant beyond its original mission of preventing “...Dr. Elaine Zackai, director of the Clinical Genetics Center at the Children's Hospital of . Tragically, the only alternative was Tay-Sachs by testing for several devastating Philadelphia, wrote: ‘The ideal screening program is one in which the participant...does not finding out too late- when children were genetic diseases, providing peace of mind even become stigmatized as a carrier. The Dor Yeshorim program is one such program.’ ” diagnosed with the fatal Tay-Sachs disease. with anonymity and dignity, researching causes and prevention of genetic disease, So Dor Yeshorim began with one simple idea: advocacy, support for families facing the Preventing tragedy and suffering by ensuring worst, and so much more.

Thanks to Dor Yeshorim, our community has “Genetic screening...and other applications of genetic engineering are permissible come so far. But there is more to do. Let’s in when used for the treatment, cure or prevention of disease....legitimate keep screening our young men and women— implementation of the Biblical mandate to heal. If Tay-Sachs disease...or other genetic US HEADQUARTERS and keep working on ever-new fronts of diseases can be cured or prevented...then it is certainly permitted in Jewish Law.” 429 Wythe Avenue preventing genetic disease. , NY 11249 Hotline: 718-384-6060 Office: 718-384-2332 osef Ekstein “Rabbi Ekstein heads Dor Yeshorim, the world's most active and most efficient [email protected] Founder, Dor Yeshorim community-based center for the prevention of genetic diseases. In 1996, the Y Robert Wood Johnson Health Leadership Program recognized Rabbi Ekstein HEADQUARTERS for his ‘outstanding commitment to reducing the number of babies born with Rechov Hamarpeh 5 718.384.6060 • 429 Wythe Avenue, Brooklyn, New York 11249 lethal genetic diseases prevalent among Eastern European Jews.’” Har Hotzvim Jerusalem, 91506, Israel Office (02) 649-9888 Dor Yeshorim 718.384.6060 3 grassroots

Wouldn’t it be simplest for the When would you say the time is right Shadchan to call Dor Yeshorim to call DY to check compatibility in the to check compatibility? process?

Dor Yeshorim will never release any information to me as a shad- Many people make the mistake of waiting until the very last chan – or any other third party. As a parent, I appreciate this; I minute to call Dor Yeshorim — sometimes even right before would not want others having access to my children’s results. To the couple becomes engaged. It is the responsibility of every protect everyone’s privacy and avoid creating stigma, no names are shadchan and parent to insist upon early on in with the ever recorded in the system and results are only provided via a re­ the process of a shidduch, perhaps even before the families or turn phone call to a telephone number that is registered on the file. individuals meet. Ideally, part of the initial research should be running the numbers by Dor Yeshorim, before anyone is too Using identifying numbers instead of names also ensures that emotionally invested in a relationship, and pain can be avoided. no one is ever personally labeled as a carrier. Dor Yeshorim will only say if a couple is compatible or incompatible. By preventing In fact, this is why Dor Yeshorim does not test an already people from knowing the status of a carrier, the possibility of engaged couple. Dor Yeshorim does not intend to break pursuing other shidduchim is not jeopardized. shidduchim; it exists to prevent avoidable pain and suffering in Q&A Klal Yisroel! As a shadchan, especially one who believes strongly in checking Shadchan compatibility early on, I often find myself in possession of numer­ Exchanging numbers to check compatibility is not a ous Dor Yeshorim numbers to be swapped between families. With commitment—it is simply part of the research. It is also A veteran Shadchan texting, it’s very easy to just snap a picture and send it along to the advisable for individuals to be screened early, before a potential shadchan. This presents a tremendous achrayus on my part not to shidduch arises. This is why mix the numbers up. Since I can receive multiple numbers per week, Dor Yeshorim arranges shares her thoughts on testing it would be very easy to send the wrong number to a family. After one screening in high particularly close call, I made it my policy to delete any Dor Yeshorim schools. Getting for genetic compatibility numbers that are given to me immediately after forwarding it to the screened right family, and I urge others to do the same. True, this takes more early helps time, and sometimes frustrates the families (“why do you need his compatibility number again? I just sent it to you a month ago!”), but it helps me be checks be a simple sure to never send the wrong number to a family Chas V’shalom. So and smooth part of while it would be convenient just to keep a database of numbers for researching a Imagine the peace of mind of easy access, I’ll leave that to the professionals at Dor Yeshorim! shidduch. a parent walking her child In today’s society, genetic testing is an important part of the shidduch process. down to the chuppah, armed Is it really so imperative when considering with the knowledge that she shidduchim? Yes! Genetic testing is a crucial part of researching a shidduch. did her hishtadlus to prevent When you are interested in pursuing a shidduch you ask all kinds ...it exists to prevent of questions about the family’s hashkafos, friends and shuls. Isn’t pain and suffering in future the health of future children at least as important? avoidable pain and generations of Klal Yisroel! I recall the case of a couple who did not undergo genetic testing suffering in klal yisroel. because neither of them had a family history of any genetic disease and so they mistakenly thought that they could not be carriers. Tragically, they ended up having two children with Rachmana L’tzlan. Today, they struggle to keep up with the expensive, time consuming and often painful treatments to help their children live a little longer. One phone call could have prevented the pain they are experiencing.

Dor Yeshorim 718.384.6060 5 grassroots Research& Findings with . Dvorah DrAbeliovich Professor of Human Genetics at the Hadassah Hebrew University Medical School

For these families, standard testing is insufficient, as the genetic When Dor Yeshorim was established must be identified and thoroughly researched — only then can reliable in 1983, its goal was to prevent Tay- testing methods be developed. Dor Yeshorim spares no expense in applying Sachs disease that was prevalent its expertise so that when the time comes, testing will be available for these among the Ashkenazic population. families, and siblings will have the means to ensure healthy families of their At that time, the mutation causing Tay-Sachs disease was unknown and own. Many times these efforts lead to the addition of more diseases to Dor we used enzymatic tests to determine Yeshorim’s screening panel, preventing further tragedy in Klal Yirsroel. Dor Yeshorim is world- carrier status. The human genome Grassroots Magazine spoke with Dr. Dvorah Abeliovich, professor of Human project has made it possible to identify renowned for its testing of Genetics, regarding Dor Yeshorim’s advanced genetic research initiatives the causing many genetic in identifying and testing for unexplored genetic diseases and mutations. diseases using DNA technology. Since known genetic diseases. the have a common GRASSROOTS MAGAZINE: objective is to minimize, and where ancestral origin they share mutations – Tell us about Dor Yeshorim’s possible, eliminate the incidence of “founder mutations” which trace back What is less known, is that developing advances in researching hereditary genetic disorders and serious to the original “mother and father” of genetic diseases and mutations, and recessive diseases common in the the Ashkenazi population. Mutations why this is so important. Jewish community. causing recessive disease can therefore Dor Yeshorim helps many exist within a healthy population; Dr. Dvorah Abeliovich: Advancement in testing has helped Dor only if both parents are carriers of a The main purpose of Dor Yeshorim Yeshorim further achieve its mission of families each year affected by recessive mutation are their children is to cease the transmission of preventing tragedy. Today, we are able at risk. Screening individuals for the genetic disorders frequent among the to test for an extremely high number of recessive mutation has allowed the obscure, under-researched Jewish community and to prevent potentially dangerous mutations. We even prevention of the birth of children the recurrence of genetic diseases in have the ability to test for rare genetic dis­ affected by severe recessive diseases. genetic diseases. families with affected children. Its orders among the individual families who Continued on page 8 turn to Dor Yeshorim for additional testing.

Dor Yeshorim 718.384.6060 7 grassroots In the WordsWord of Our Gedolim The Dor Yeshorim program was created with great effort and care under the advice of Torah luminaries, both present and past, as well as with the world’s foremost experts and researchers in the field of genetics. Dor Yeshorim strictly adheres to the dictates of the Gedolim never revealing carrier status and only testing for Research& Findings with absolutely necessary diseases. . Dvorah mutations. Finding a mutation can take tremendous leap forward. Robotics many months—sometimes years. When provide the advantages of ensured Dr a mutation is found, we must then prove speed, precision, and high exactitude, Abeliovich that it is responsible for the disease, by with a much smaller possibility of Continued from page 7 studying how the mutation affects the human error in the process. Robots The process of identifying founder individuals. When we are certain that can reliably test high volumes of blood mutations is very complex, laborious the familial mutation was identified, samples, with much stricter quality and expensive. Dor Yeshorim initiates we must then determine whether this control than before. In the research many research projects and organizes mutation is a “founder mutation” in the stage, robots can process thousands teams of clinicians, scientists and Ashkenazi Jewish population by testing of tests and produce a tremendous bioinformatics experts with the goal thousands of Ashkenazi individuals to amount of reliable data within a of identifying more disease-causing prove that it is not just a rare onetime reasonable time period. mutations found in the Jewish mutation. Once a new founder mutation We work with excellent laboratories population. is identified it can be included in the and medical centers which utilize the preventive program of Dor Yeshorim. highest quality cutting-edge technology. GRASSROOTS MAGAZINE: The initiative’s scope is incredible. How does the process work? GRASSROOTS MAGAZINE: Though the research process is very What technological advancements Dr. Abeliovich: costly, it is worth all of the expense have been helpful? At first, we identify families with and effort. Dor Yeshorim has been children who suffer from genetic Dr. Abeliovich: successful thanks to Rabbi Ekstein and recessive disorder. Using blood samples The use of robotics has done the devoted workers involved in the gathered from the affected children, wonders for testing. We have various stages of the process, allowing their parents and family members, progressed from human hand Dor Yeshorim to continue preventing we can study the DNA and search for laboratory work to robotics. This is a tragic genetic diseases.

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hrough providing compatibility for a recessive disease, they are informed that checks, leading research and offering they are incompatible. Even so, exact details of counseling, Dor Yeshorim has grown carrier status is generally not revealed. Keeping T into a tremendous force fighting carrier status unknown prevents stigma, anxiety genetic disease in Klal Yisroel. and undue stress associated with the knowledge Since its inception in 1983 as a Tay-Sachs that one is a carrier. Dor Yeshorim offers genetic testing program, Dor Yeshorim has expanded counseling for those found incompatible. its testing to numerous other genetic recessive Dor Yeshorim does not test for every genetic disorders, including , Familial disease. The primary goal of Dor Yeshorim is to Dysautonomia, and more. Dor protect Klal Yisroel from devastating recessive Yeshorim also actively participates in medical diseases which result from both parents being research of genetic diseases and offers counseling carriers. Dor Yeshorim exists to build, not break and support to families suffering from genetic shidduchim. Therefore, Dor Yeshorim keeps up- illness. These services are made possible mainly to-date on new treatments and medical findings through generous contributions from donors who so that if a disease is found to be treatable, realize the importance Dor Yeshorim of Dor Yeshorim’s can reconsider mission. The minimal whether to fee participants pay The primary goal of continue covers only a fraction testing for it as of the program’s costs. opposed to, how Dor Yeshorim runs Dor Yeshorim is to constructive mostly on donations and it is in light Behind sponsorships. of creating The first step in protect Klal Yisroel shidduchim.

THE the process involves Families the collection of DNA from devastating who are affected samples. To promote by rare genetic Scenesat Dor Yeshorim accuracy, DNA is taken illness will from blood samples which recessive diseases” often contact provide more accurate Dor Yeshorim, “I’m calling from Dor Yeshorim... results than DNA taken who will use “I’m calling fro m Dor Yeshorim... from swab tests. Each participant receives an all the resources necessary to find the cause for your numbers are compatible. identification number – no names are used in the the disease and provide medical guidance. The your numbers are compatible. process to ensure complete confidentiality. The nature, frequency and severity of these obscure samples are then sent to a laboratory where a diseases are carefully studied and may be added We wish you mazal and bracha.” panel of tests are run and the information is saved to the testing panel. We wish you mazal and bracha.” in a database. No expense is spared to ensure Dor Yeshorim and its generous supporters that the tests are precise and comprehensive. work B’ezras Hashem, to help research and Throughout the process, details are double- eliminate devastating genetic diseases in checked by at least two experts to ensure that Klal Yisroel as well as provide resources and Thousands of people have heard a similar everything is done with utmost accuracy. counseling to affected families. Dor Yeshorim When someone calls requesting a works tirelessly and feels privileged to be compatibility check, the individuals’ test results entrusted with ensuring the health and future of message, but how many realize the extent to are compared. If both are found to be carriers our doros. which Dor Yeshorim goes to help the tzibbur?

Dor Yeshorim 718.384.6060 11 grassroots

id You Know

Thanks to Dor Yeshorim, the prevalence of Dor Yeshorim sets an industry standard for devastating genetic diseases has dropped genetic testing, utilizing cutting edge technology, dramatically within the Jewish community. and testing methods alongside an innovative, DFor example, Kingsbrook Hospital once had one highly regulated system renowned for its of the largest Tay-Sachs wards, with a waiting inherent confidentiality and ease of access. list of patients. Thanks to the work of Dor Yeshorim, the ward has been closed for good. Dor Yeshorim processes an astounding 22,000 compatibility requests annually. Dor Yeshorim Dor Yeshorim arranges mass screenings at also provides genetic counseling and medical over 400 schools in 11 countries worldwide, guidance for families with children affected screening over 20,000 new individuals per year. with genetic diseases and couples found to be Dor Yeshorim also has representatives in every incompatible. populated Jewish city around the globe for individual screenings as well. Dor Yeshorim remains at the forefront of genetic research, collaborating with world renowned The discounted testing fees, kept minimal to geneticists and medical institutions to research ensure access to all, reflect only a small portion new advancements in education, treatment and of the actual overall cost the organization prevention of genetic diseases. incurs to research, screen, test, and handle unlimited compatibility checks and Dor Yeshorim receives and handles hundreds meticulous data entry. Individuals can request of requests for guidance and resources from compatibility results numerous times without families afflicted with obscure genetic diseases. incurring additional fees. Dor Yeshorim painstakingly identifies their mutations and develops reliable screening methods to prevent the recurrence of those diseases in their families.

Hotline: (718) 384-6060 [email protected]

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