Sephardi Program Brochure

בס"ד Doing Our Part to Ensure Healthy Families Bez”h Specialized Screening for Sephardim The Dor Yeshorim Confidential Premarital Screening Program About Dor Yeshorim mkizeytpl c`n mzxnype About Dor Yeshorim (e"h,c mixac) Dor Yeshorim began over thirty years ago as a grass roots organization, The key to healthy generations is in our seeking to, and eventually succeeding, hands bez”h! Let’s do our hishtadlut to in eradicating Tay-sachs. Today, prevent devastation. Getting tested is a Dor Yeshorim is an internationally privilege and an obligation upon us. acclaimed, confidential, pre-marital The information in this brochure is vital genetic screening organization, standing to ensure the health of your family and at the forefront of genetic research and future generations. prevention. Headquartered in New York and Jerusalem, Dor Yeshorim serves the All the facts have been verified and Healthy Generations Jewish community in eleven countries the repercussions of genetic diseases exposed. The danger is real, but the across the globe. ultimate choice is up to each one of us. It has been absolutely confirmed Our mission: that Sephardic Jews are susceptible to • Provide confidential premarital serious risks of incurable genetic diseases screening worldwide, to boys and caused by incompatibilities between girls of marriageable age and prevent spouses. Dozens of Sephardic families are the devastation of genetic disease. suffering the consequences of children • Support families with children born with serious genetic diseases. affected by rare genetic disease Passionate letters by parents and through ongoing guidance and family members of children afflicted assistance. with genetic diseases, leading Sephardic rabbonim and seminary • Conduct ongoing, principals, urge parents and young cutting-edge research boys and girls of marriageable age on genetic diseases to undergo Dor Yeshorim screening currently afflicting tests prior to entering shidduchim. Jewish families This is a responsibility, an obligation with the goal of that lies on every eligible girl and providing testing boy—and their parents, as hishtadlut capabilities and to prevent serious illnesses that cause preventing the heartbreak, anguish, and serious recurrence of the health repercussions such as severe disease. debilitation and death. 2 • About Dor Yeshorim Our Mission • 3 Understanding Genetics Medically & Halachically Guided Understanding Genetics Dor Yeshorim is run in accordance Genes, made up of twisted strands of with the guidance and direction of DNA, are the blueprint for life; they tell halachic authorities and prominent our cells what to do and when to do it. Gedolim across the spectrum as well as a DNA is constantly subject to changes, preeminent board of medical experts. referred to as mutations. The mutations we hear about most often are usually Absolutely Confidential the ones that cause disease. A person Dor Yeshorim’s interactions, procedures who carries a mutated gene for a specific and communications are all strictly recessive disease is called a carrier. confidential; we do not reveal the carrier status of an individual. A participant Carriers are healthy and will never develop will only be informed of the genetic the disease! However, children of carrier compatibility with his/her potential parents for the same disease have a 25% spouse and not his/her genetic carrier chance of inheriting two altered genes status results. This cornerstone of and developing the disease. Dor Yeshorim the organization serves to ensure the tests for recessive genetic diseases; privacy of every individual and avoids diseases that require both the mother any potential stigma related to testing and father to pass along the same mutated outcomes. gene in order for the disease to occur. What makes Dor Yeshorim Unique? What makes Dor Yeshorim Our unique coded numbering system Did You Know? provides peace of mind and further No names are ever exchanged protects the privacy and dignity of throughout the Dor Yeshorim process. participants and their families. This Your privacy is paramount. system remains the only proven way to safeguard our communities. Autosomal Recessive Case Specific Genetic Testing In addition, Dor Yeshorim offers assistance and specialized screenings for families affected by rare, previously unknown genetic disease. Our non-stop research underscores our mission to do everything possible to protect future Jewish generations. 4 • What makes Dor Yeshorim Unique? Understanding Genetics • 5 Checking Compatibility Mass/School Screening Checking Compatibility Dor Yeshorim conducts mass screening When a match is considered, both sides drives at high schools, yeshivas, exchange ID numbers and day/month of seminaries and colleges worldwide. This birth and call Dor Yeshorim’s easy-access, makes screening access easy for boys 24-hour automated hotline. and girls approaching marriageable age and helps avoid the anxiety and expense Compatibility checks are fast, of last minute testing when a potential unlimited and free of charge. match arises. If neither or only one party is a carrier for the Blood samples are drawn and each same recessive disease, the match is deemed participant receives an identification genetically compatible and a Dor Yeshorim card and number. The samples are sent representative will call both parties, to the to CLIA certified, ISO accredited and phone number on file, to inform them that New York state licensed labs, under the they can proceed, risk free in regard to the supervision of Dor Yeshorim, where they tested genetic diseases. However, if both are undergo rigorous DNA testing. Results found to be carriers of the same disease they are entered into a highly regulated, central are informed that the match is genetically database under stringent quality controls. incompatible, advised of the risks of The Program: How Does It Work? proceeding and offered genetic counseling. Turnaround School and mass screening results Get tested and check compatibility are ready in 3 to 4 months; individual early! screenings in 2 to 3 weeks. It is imperative to check compatibility before meeting for the first time in order to avoid Dor Yeshorim also has representatives any last-minute rush, expense and potential in cities around the globe who conduct heartache. individual testing. To coordinate a mass screening event Did You Know? in a yeshivah or seminary or for more A Dor Yeshorim compatibility check is not information on testing locations and a commitment. It is the most important screening events please call the piece of information you need to assure the Dor Yeshorim office 718.384.6060 shidduch has future potential! Did You Know? Mass screenings are conducted at over 400 schools in 11 countries worldwide 6 • How Does it Work? Checking Compatibility • 7 The Sephardic Testing Panel Protecting the Klal while never The Sephardic Testing Panel losing sight of the individual Many people have the misconception When a family unfortunately has a history that genetic diseases are something that of genetic disease, Dor Yeshorim has only affect the Ashkenazic community. the ability to identify and screen for Yet, unfortunately, it is not so. In May additional genetic diseases not included in of 2015, Hacham Yitzchak Yosef, shlita, the regular panels, including neurological the Rishon L’Tzion of Eretz Yisrael and and metabolic disorders, instances such Av Bet Din of the Chief Rabbinate of as deafness, blindness, etc. Israel Supreme Bet Din, called upon all Sephardim to be tested for genetic Once a family contacts Dor Yeshorim, inconsistencies. Over the past few years, we provide ongoing and compassionate many individuals from the Sephardic guidance and support to help them community reached out to Dor Yeshorim navigate the disease and its implications because they unfortunately, gave birth while protecting their privacy and to children with fatal and debilitating maintaining absolute confidentiality. Case Specific Genetic Testing genetic diseases r”l. Based on experience Dor Yeshorim conducts extensive case and scientific research gathered through specific research to identify and develop the years of testing thousands of testing for the disease-causing mutation Sephardim, Dor Yeshorim introduced an and creates peace of mind by preventing all-new panel to test for genetic diseases these diseases from manifesting in most prevalent among the different future generations. segments of Sephardi Jews. It has B”H been proven effective in preventing many incompatible and high- The heartbreaking agony of families afflicted by genetic disease was risk marriages among Sephardic couples. the driving force for Dor Yeshorim to Over 30 thousand Sephardic Jews have create a comprehensive Sephardic already joined the program. We all Testing Panel and will B’ezras Hashem deserve healthy families. No one can eradicate their occurrence. safely assume that they’re exempt from a genetic disease. 8 • Case Specific Genetic Testing Testing Panels • 9 DISEASE WE CURRENTLY TEST COMMON BY FREQUENCY Achromatopsia - Total Color-Blindness (CNGA3) Iran Achromatopsia - Total Color-Blindness (CNGB3) Syria Ataxia Telangiectasia Morocco/Yemen/North Africa 1 out of 80 Congenital Adrenal Hyperplasia (CYP11B1) Syria Costeff Syndrome Iraq Cystic Fibrosis All Sephardim 1 out of 55 Cystinosis Morocco 1 out of 100 Developmental Encephalopathy Syria What We Test For Fanconi Anemia Type A Morocco/Tunisia 1 out of 100 Inclusion Body Myopathy Iran 1 out of 12 Infantile Cerebral and Cerebellar Atrophy (ICCA) Caucasus,

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