בס"ד

Dor Yeshorim Fulfilling Our Responsibility to the Next Generation , for over 26 years, has had one mission: premarital program is the best application of preventive medicine and the most successful application of genetic sciences to date, anywhere in the The total elimination of the occurrences of recessive genetic illnesses. world. To accomplish this mission, Dor Yeshorim utilizes a program that does no harm to participants, avoids their stigmatization, and is guided by halachah. The Dor Yeshorim program has become an integral part of the process in the Torah observant Ashkenazi Jewish community worldwide. Under the direction of Gedolei Yisroel and the world’s foremost medical Over 300,000 individuals have, since its inception, participated in the experts, Dor Yeshorim has managed to eliminate the incidence of Tay program, with over 22,000 individuals being screened and joining the Sachs disease, as well as other recessive genetic diseases common to the program every year. To date, more than 1,600 marriages of couples, where Ashkenazi Jewish community, while zealously guarding the privacy and both parties were carriers of a genetic , and therefore risked having dignity of Jewish families. affected children, have been avoided. The impact of the Dor Yeshorim program is indisputable. After over 26 years Today it’s a given that a potential choson or callah doesn’t arrive at a of activity there are virtually no children born with Tay Sachs disease! This marriage decision without first ascertaining genetic suitability. Using the accomplishment is evidenced by the fact that Kingsbrook Medical Center, in Dor Yeshorim program can prevent disasters in future generations. New York, has closed its 16-bed Tay Sachs treatment unit for good. The Dor Yeshorim program is how we fulfill our responsibility to the next The world’s foremost medical experts agree that the Dor Yeshorim generation. What are recessive genetic diseases?

The genetic attributes of each person comes from his or her parents. The tragedy and suffering that can ensue in such cases simply defies Those attributes are transmitted from one generation to the next, description. codified in the DNA of the genes that are found in every cell of the body. Sometimes a change – a mutation - occurs in the genetic data, The only way to prevent recessive genetic disease is to avoid a marriage resulting in a defective gene. of a ‘matching carrier’ couple. Both carriers can marry other, non-carriers, in total safety. One in every three to four people carries various gene , with no ill effects. In fact, the person will not even be aware of it. This is Only the Dor Yeshorim program can give the peace of mind to a prospective because we all have a set of two ‘copies’ of every gene. As long as there choson and callah, that they can prevent the birth of children with these is only one gene mutation, no disease will occur, since the intact gene serious genetic diseases. of the pair ‘takes over’. A person having only one copy of the gene mutation is called a ‘carrier’. As long as both parents are not carriers, there is no danger of their child being affected by the mutation that Important notice: only one parent is carrying. Even if there has never been genetic disease in your family, you can The problem arises when both parents posses the same gene mutation. still be a ‘carrier’. Over 90% of affected children are born to parents In such cases, some of the children are in danger of inheriting a matched who have never even heard of genetic diseases before! set of two gene mutations. The Recessive Genetic Diseases That Listed below are diseases included in the Dor Yeshorim program and the Are Part of the Dor Yeshorim Program frequency of each disease among of Ashkenazi descent.

Disease Frequency

The Dor Yeshorim program focuses on genetic mutations that cause severe Tay Sachs 1 of every 25 genetic diseases common in Jews of Ashkenazi descent. Large resources 1 of every 25 are invested in research to identify more mutations, endemic to different 1 of every 26 groups of Jews, and in developing screening methods to detect them in 1 of every 36 program participants. Glycogen Storage Type 1a 1 of every 65 Dor Yeshorim also exerts great efforts, and is constantly expending Type C 1 of every 75 resources, to improve the quality and reliability of the screening Mucolipidosis Type 4 1 of every 93 component of the program. 1 of every 95 Niemann Pick A&B 1 of every 100 Tay Sachs (TS), Canavan Disease (CN), Niemann Pick (NP) Familial Dysautonomia (FD) All three are fatal metabolic dysfunctions that result from the body’s FD mainly affects the central nervous system, which is responsible for inability to break down certain substances. Eventually, these substances many of the body’s systems, such as blood-pressure stabilization, motor accumulate in the cells, causing progressive damage. The diseases manifest function, sensory nervous system and the ability to swallow and perspire, in various neurological symptoms that, after a few months, arrest the proper among other functions. Patients affected by FD are typically recognized Sick children rarely reach the age of five. Their by “tearless crying”. FD patients often experience low sensitivity to pain .ל"ע development of the child lives are short, devastating, suffering-filled years for both child and family. which puts them in danger of fractures, wounds and burns. As the disease There are no known cures or treatments. progresses, the digestive, respiratory skeletal, and circulatory systems are The genes for these diseases are very prevalent. The Tay Sachs genetic often affected as well. Familial Dysautonomia is incurable. mutiaton alone is present in one of every 25 Jews of Ashkenazi descent and Dor Yeshorim was actually a part of the successful effort to identify the one of every 100 Jews of North African descent. genetic mutations that cause the disease and the establishment of genetic tests to detect it. Cystic Fibrosis (CF) Cystic Fibrosis manifests itself in serious respiratory ailments as well as other health problems of varying severity. The lives of CF patients are filled with ongoing suffering and frequent, lengthy hospitalizations. Many times, CF patients require lung transplants to survive. Fanconi Anemia Type C Bloom Syndrome Fanconi Anemia manifests itself in severe anemia, congenital defects in the Bloom Syndrome is typified by dwarfism, a tendency towards malignant extremities and a tendency towards cancer and leukemia. In some patients tumors, chromosomal instability, hyper-sensitivity to sunlight and more. the disease causes mental retardation and dwarfism. The treatment entails Many Bloom Syndrome patients suffer from mental retardation as well. frequent blood transfusions and patients’ lives are filled with anguish. The The disease is more common among Jews of Ashkenazi descent than the only possible way to cure the disease is by transplantation of bone marrow general population. or umbilical cord blood stem cells.

Mucolipidosis Type 4 Glycogen Storage Type 1a Mucolipidosis is a severe degenerative disease of the brain that hampers Patients with this disease lack the ability to break down glycogen (sugar). neurological and motor development and causes blindness. The symptoms This results in complicated diabetes and severe digestive disturbances. appear before age one. Some patients reach adulthood, but never develop Glycogen Storage frequently leads to liver tumors and can be fatal. beyond the level of a 12-18 month old. Screening methods and quality assurance

Dor Yeshorim genetic screening employs the most extensive, complex, and expensive molecular DNA methodologies performed at top laboratories. Important notice: All screening is supervised by senior inspectors from beginning to end. Procedures and equipment adhere to the international ISO code Ethnic diversity and different countries of origin do not offer fail-safe 15189:2003 of professional labs. protection from genetic diseases, even if some diseases are not as common in a particular group.

Are non-Ashkenazi populations protected Important notice: by the Dor Yeshorim program?

The genetic screening offers protection only against the diseases that are Some of the diseases in the Dor Yeshorim program are found in non- part of the screening program. It is possible to perform some additional Ashkenazi populations as well, but are far less prevalent. Since the screening by special request (such as for deafness, Usher’s Syndrome, diseases are rarer, some of the mutations have not been identified yet. Nemaline Myopathy, and more). In cases where there have been genetic For this reason, screening can be less reliable for Jews of non-Ashkenazi problems or disease in the family’s history, it is imperative to make sure descent. that the disease/mutation is included in the Dor Yeshorim screening plan Dor Yeshorim, in conjunction with some of the world’s foremost genetic for you or your family member. researchers, is engaged in an effort to give the best possible answers in such cases as well. Rabbinical Approbations

הנה ידוע ומפורסם בין רבנים ומורי הוראה בעלי ניסיון מהאסון והשמות שעשתה המחלה הנוראה טיי-זקס ועוד מחלות דם דומות בבתי ישראל כשרים וחרדים לדבר ה ואני הגבר כבר ראיתי משפחות חשובות מתמוטטות ר"ל ע"י שרואים עולליהם הולכים וחסרים בגיל שלוש עד שש ואין שום עזר להם עפ"י רפואה - וא"א בשום פעם להנצל מאסון זה רק ע"י זהירות לפני קישור השידוכין ע"י בדיקת הדם שיכולה להראות בעליל אם ח"ו דימיון זה נמצאים בדמיהם של הבחור והנערה ע"י קשר השידוכין - ומה שלא יקרה ע"י זווג אחר לבחור זה ולנערה זו.והנה קמו גדולי הרבנים בארה"ב של אמריקה לחזק חבורת אברכים יקרים וחשובים המוכרים לי היטב בשם "דור ישרים" ששמו להם למטרה הנעלה להציל משפחות שלימות מאבדון וכולם מסכימים שעפ"י התורה דבר גדול מאוד, ודרכם דרך נכונה לעשות את הבדיקות באופן סודי ביותר שגם הרופא הבודק לא ידע שמם ושאר דברים מועילים ל"דור ישרים" לפני אחבנ"י יה"ר שיסיר מחלה מקרבנו ככתוב: "אני ה' רופאך". The Dor Yeshorim Program: Terms of Participation

The Dor Yeshorim program was created with great effort and care under Dor Yeshorim is a worldwide program available to all who request to the advice of Torah luminaries, both present and past, as well as with the participate. Participation, at any point of the program, including the world’s foremost experts and researchers in the field of genetics. The terms requesting of compatibility, is not allowed if the prospective participant of participation in the Dor Yeshorim program are unchangeable under any has been privately tested or is in a committed relationship or is engaged condition! to be married. Compatibility checks are performed for all participants, regardless of their country of origin or the place where the original To some individuals, especially those under pressure to conclude screening was done. an imminent shidduch, Dor Yeshorim’s rules may seem like needless bureaucracy. Some find it hard to understand that these rules were implemented to provide adequate protection for future generations. As a Important: public service, Dor Yeshorim is obliged to safeguard the dignity, privacy, and confidentiality of each and every participant in the program. Strict The Dor Yeshorim program relies on the generous donations of caring adherence to program rules has been and will continue to be the only philanthropists from around the world. The cost per participant guarantee of success. This is what has given the Dor Yeshorim program the far exceeds the participant's donation. The generosity of donors is complete public trust it enjoys. necessary to bridge the gap between our cost to deliver the program and the amount collected. Donations are accepted with gratitude. Identifying subjects and confidentiality results

The Dor Yeshorim program is based on the confidentiality of the identity of the participants, Important: as well as their carrier status. This confidentiality is essential to prevent attachment of stigma to carriers and their families and to prevent negative psychological and social Dor Yeshorim never keeps participant names. It is imperative that each participant keep his outcomes that might result from the needless knowledge of being a carrier. or her personal identification number in a safe, retrievable location for future use. Loss of a It is imperative to understand that there are no medical ramifications, whatsoever, to being participant’s number will usually require rescreening. a carrier, other than the need to avoid marrying another carrier of the same disease. Again: Dor Yeshorim does not provide screening results to anyone. The only The Dor Yeshorim program is comprised of two stages: The initial individual screening, information Dor Yeshorim gives is the result of a compatibility check of two previously and the compatibility check for prospective couples. The individual screening is often screened participants, who are not married, are not engaged to be married, and do accomplished years before there is even thought of marriage, commonly during the high not know their carrier status from private testing, and are checking for the purpose school years. The screening establishes whether the participant is a carrier for any of the of a prospective shidduch. genetic diseases – and, if so, which one(s). Dor Yeshorim does not provide screening results to anyone. The Dor Yeshorim program may NOT be used for any clinical diagnosis or medical purpose. The compatibility check should be done as early in the shidduch process as possible, Identification and confidentiality preferably before the prospective couple meet each other. Waiting period A compatibility check allows the prospective couple to ascertain if there is any genetic For screening done in education institutions and blood donation stations, a participant reason why the couple should not get married. typically can request answers for compatibility checking in about three months. If there is an Participants do not identify themselves at the time of the screening. Every participant urgent need for quicker results, the Dor Yeshorim office should be contacted immediately. receives an identifying personal number. The identification number is the only way any A shorter procedure is available that enables the receiving of compatibility results within individual is recognized by the Dor Yeshorim system and is the only way to get compatibility three weeks. In very urgent cases only, compatibility results may be gotten within 4 to 7 results. work days. Faster processing may require an additional fee. Getting results

When ascertaining genetic compatibility, each side – that of the male AND female – must 2. Immediately upon conclusion of the particular shidduch process, the shadchon must contact Dor Yeshorim’s hotline directly at 718-384-6060 and give both personal identification destroy the numbers and never keep them for “future matches”. In cases of subsequent numbers along with the day and month of birth – not the year! This requirement of both shidduchim involving the same individuals, the shadchon must receive the number participants calling in their information decreases the possibility of mistakes. anew from the family each and every time!

Important: Important: Dor Yeshorim only gives compatibility results directly to participants and/or their parents. It is imperative that both sides request a separate compatibility check. Participants must A number that was used in any different way than those prescribed may be be sure to receive the personal number and date and month of birth from the other party canceled and purged from the system. Dor Yeshorim will not be responsible directly. In cases where the information has been exchanged through a shadchon, the for any compatibility checks that are made with such a number! information, particularly the identification numbers, must be rechecked to ensure that the correct information has been provided to Dor Yeshorim. Important:

Attention Shadchonim The exchange of Dor Yeshorim identification numbers does not constitute an Our extensive experience has shown that several mistakes may occur when a shadchon is agreement to be married. To prevent emotional anguish, it is imperative to involved in the process. request the compatibility check as early as possible in the shidduch process. To prevent these problems, the following rules must be followed: There is no cost to participants or limit to the number of compatibility checks 1. Any identification number given by a family should be used only to transfer it to the other requested. party – and only for that particular shidduch. No other use should ever be made with that number. Professional Comments

When is the right “The Dor Yeshorim program for the prevention of hereditary disease in the religious/Haredi segment of the “…The Dor Yeshorim organization, time to join the Dor population has extremely significant and its director Rabbi Ekstein, medical, social and financial already proved themselves beyond Yeshorim Program? importance. Resources should be doubt with their selfless efforts lavishly invested in order to continue and further develop it.” to promote awareness to (genetic diseases), their unbending Professor Gideon Bach insistence on complete discretion, and their ongoing efforts to Head of theHadassah Human Genetics Ein Kerem department simplify the testing procedure and make it easier. It is an honor for me The best possible time is while you are still in high school. In addition to recommend them before all.” to specially subsidized fees, typically offered at such institutions, early Dr. Hanna Katan partacipation in the program prevents emotional stress, anguish and “(I have) personally treated babies unnecessary expenses. who suffered from fatal hereditary Educational institutions that are not currently enrolled in the Dor Yeshorim neurological diseases. I can testify program are urged to submit a request for setting screening dates. to the extreme duress suffered by the family of children sick with advanced degenerative brain “The tests of the Dor Yeshorim Dor Yeshorim Advisory Medical Board disease. The Dor Yeshorim program program are of extreme Dor Yeshorim enjoys the constant medical advice of leading genetic saves many families untold amount importance. One hopes that they will lead to the expunging medical experts from the following institutions: of suffering and pain I have witnessed in the days before Dor of these fatal diseases that Yeshorim came into existence.” are so common among Jews of Columbia University Ashkenazi descent.” The Albert Einstein College of Medicine Dr. Edwin Kolodney, MD New York University Medical Center Head of Department of Neurology Dr. Jay Adler MD Hadassah University Medical Center, Jerusalem New York University School of Medicine London, England Thomas Jefferson University, Philadelphia National Neurology Hospital, London The wondrous success of the Dor Yeshorim organization is brought up at many scientific conferences around the world. The point that is always emphasized is that the program is a community-driven effort. Genetic experts note that the pre-screening conducted by Dor Yeshorim is the most successful practical application of genetic science and the finest manifestation of preventive medicine.

Dor Yeshorim Committee for Prevention of Jewish Genetic Diseases

Form no. 7-44 Version 1.0 Valid from 01.01.11 from Valid 1.0 Version 7-44 no. Form Main Offices: Offices: 429 Wythe Ave. 5 HaMarpe Street, Har Hotzvim New York P.O.B. 50458 Jerusalem 91506 Israel Hotline: 718-384-6060 Tel. 02-64 99 888 Fax: 718-384-2815 Fax. 02-64 99 889

Dor Yeshorim is a recognized 501(c)3 non-profit organization אגודת דור ישרים ע. ר. 58-009-2690