Program Brochure

‫בס"ד‬
Dor Yeshorim
Fulfilling Our Responsibility
to the Next Generation
Dor Yeshorim, for over 26 years, has had one mission:
The total elimination of the occurrences of recessive genetic illnesses.
To accomplish this mission, Dor Yeshorim utilizes a program that does no
harm to participants, avoids their stigmatization, and is guided by halachah.
Under the direction of Gedolei Yisroel and the world’s foremost medical
experts, Dor Yeshorim has managed to eliminate the incidence of Tay
Sachs disease, as well as other recessive genetic diseases common to the
Ashkenazi Jewish community, while zealously guarding the privacy and
dignity of Jewish families.
The impact of the Dor Yeshorim program is indisputable. After over 26 years
of activity there are virtually no children born with Tay Sachs disease! This
accomplishment is evidenced by the fact that Kingsbrook Medical Center, in
New York, has closed its 16-bed Tay Sachs treatment unit for good.
The world’s foremost medical experts agree that the Dor Yeshorim
premarital program is the best application of preventive medicine and the
most successful application of genetic sciences to date, anywhere in the
world.
The Dor Yeshorim program has become an integral part of the shidduch
process in the Torah observant Ashkenazi Jewish community worldwide.
Over 300,000 individuals have, since its inception, participated in the
program, with over 22,000 individuals being screened and joining the
program every year. To date, more than 1,600 marriages of couples, where
both parties were carriers of a genetic mutation, and therefore risked having
affected children, have been avoided.
Today it’s a given that a potential choson or callah doesn’t arrive at a
marriage decision without first ascertaining genetic suitability. Using the
Dor Yeshorim program can prevent disasters in future generations.
The Dor Yeshorim program is how we fulfill our responsibility to the next
generation.
What are recessive genetic diseases?
The genetic attributes of each person comes from his or her parents.
Those attributes are transmitted from one generation to the next,
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,
resulting in a defective gene.
One in every three to four people carries various gene mutations, with
no ill effects. In fact, the person will not even be aware of it. This is
because we all have a set of two ‘copies’ of every gene. As long as there
is only one gene mutation, no disease will occur, since the intact gene
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
only one parent is carrying.
The problem arises when both parents posses the same gene mutation.
In such cases, some of the children are in danger of inheriting a matched
set of two gene mutations.
The tragedy and suffering that can ensue in such cases simply defies
description.
The only way to prevent recessive genetic disease is to avoid a marriage
of a ‘matching carrier’ couple. Both carriers can marry other, non-carriers,
in total safety.
Only the Dor Yeshorim program can give the peace of mind to a prospective
choson and callah, that they can prevent the birth of children with these
serious genetic diseases.
Important notice:
Even if there has never been genetic disease in your family, you can
still be a ‘carrier’. Over 90% of affected children are born to parents
who have never even heard of genetic diseases before!
The Recessive Genetic Diseases That
Are Part of the Dor Yeshorim Program
Listed below are diseases included in the Dor Yeshorim program and the
frequency of each disease among Jews of Ashkenazi descent.
Disease
Frequency
The Dor Yeshorim program focuses on genetic mutations that cause severe
genetic diseases common in Jews of Ashkenazi descent. Large resources
are invested in research to identify more mutations, endemic to different
groups of Jews, and in developing screening methods to detect them in
program participants.
Tay Sachs
1 of every 25
Familial Dysautonomia
1 of every 25
Cystic Fibrosis
1 of every 26
Canavan Disease
1 of every 36
Glycogen Storage Type 1a
1 of every 65
Dor Yeshorim also exerts great efforts, and is constantly expending
resources, to improve the quality and reliability of the screening
component of the program.
Fanconi Anemia Type C
1 of every 75
Mucolipidosis Type 4
1 of every 93
Bloom Syndrome
1 of every 95
Niemann Pick A&B
1 of every 100
Tay Sachs (TS), Canavan Disease (CN), Niemann Pick (NP)
All three are fatal metabolic dysfunctions that result from the body’s
inability to break down certain substances. Eventually, these substances
accumulate in the cells, causing progressive damage. The diseases manifest
in various neurological symptoms that, after a few months, arrest the proper
development of the child ‫ל"ע‬. Sick children rarely reach the age of five. Their
lives are short, devastating, suffering-filled years for both child and family.
There are no known cures or treatments.
The genes for these diseases are very prevalent. The Tay Sachs genetic
mutiaton alone is present in one of every 25 Jews of Ashkenazi descent and
one of every 100 Jews of North African descent.
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.
Familial Dysautonomia (FD)
FD mainly affects the central nervous system, which is responsible for
many of the body’s systems, such as blood-pressure stabilization, motor
function, sensory nervous system and the ability to swallow and perspire,
among other functions. Patients affected by FD are typically recognized
by “tearless crying”. FD patients often experience low sensitivity to pain
which puts them in danger of fractures, wounds and burns. As the disease
progresses, the digestive, respiratory skeletal, and circulatory systems are
often affected as well. Familial Dysautonomia is incurable.
Dor Yeshorim was actually a part of the successful effort to identify the
genetic mutations that cause the disease and the establishment of genetic
tests to detect it.
Fanconi Anemia Type C
Fanconi Anemia manifests itself in severe anemia, congenital defects in the
extremities and a tendency towards cancer and leukemia. In some patients
the disease causes mental retardation and dwarfism. The treatment entails
frequent blood transfusions and patients’ lives are filled with anguish. The
only possible way to cure the disease is by transplantation of bone marrow
or umbilical cord blood stem cells.
Glycogen Storage Type 1a
Patients with this disease lack the ability to break down glycogen (sugar).
This results in complicated diabetes and severe digestive disturbances.
Glycogen Storage frequently leads to liver tumors and can be fatal.
Bloom Syndrome
Bloom Syndrome is typified by dwarfism, a tendency towards malignant
tumors, chromosomal instability, hyper-sensitivity to sunlight and more.
Many Bloom Syndrome patients suffer from mental retardation as well.
The disease is more common among Jews of Ashkenazi descent than the
general population.
Mucolipidosis Type 4
Mucolipidosis is a severe degenerative disease of the brain that hampers
neurological and motor development and causes blindness. The symptoms
appear before age one. Some patients reach adulthood, but never develop
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.
All screening is supervised by senior inspectors from beginning to
end. Procedures and equipment adhere to the international ISO code
15189:2003 of professional labs.
Important notice:
Ethnic diversity and different countries of origin do not offer fail-safe
protection from genetic diseases, even if some diseases are not as
common in a particular group.
Important notice:
Are non-Ashkenazi populations protected
by the Dor Yeshorim program?
The genetic screening offers protection only against the diseases that are
part of the screening program. It is possible to perform some additional
screening by special request (such as for deafness, Usher’s Syndrome,
Nemaline Myopathy, and more). In cases where there have been genetic
problems or disease in the family’s history, it is imperative to make sure
that the disease/mutation is included in the Dor Yeshorim screening plan
for you or your family member.
Some of the diseases in the Dor Yeshorim program are found in nonAshkenazi populations as well, but are far less prevalent. Since the
diseases are rarer, some of the mutations have not been identified yet.
For this reason, screening can be less reliable for Jews of non-Ashkenazi
descent.
Dor Yeshorim, in conjunction with some of the world’s foremost genetic
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
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. The terms
of participation in the Dor Yeshorim program are unchangeable under any
condition!
To some individuals, especially those under pressure to conclude
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
public service, Dor Yeshorim is obliged to safeguard the dignity, privacy,
and confidentiality of each and every participant in the program. Strict
adherence to program rules has been and will continue to be the only
guarantee of success. This is what has given the Dor Yeshorim program the
complete public trust it enjoys.
Dor Yeshorim is a worldwide program available to all who request to
participate. Participation, at any point of the program, including the
requesting of compatibility, is not allowed if the prospective participant
has been privately tested or is in a committed relationship or is engaged
to be married. Compatibility checks are performed for all participants,
regardless of their country of origin or the place where the original
screening was done.
Important:
The Dor Yeshorim program relies on the generous donations of caring
philanthropists from around the world. The cost per participant
far exceeds the participant's donation. The generosity of donors is
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,
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
outcomes that might result from the needless knowledge of being a carrier.
It is imperative to understand that there are no medical ramifications, whatsoever, to being
a carrier, other than the need to avoid marrying another carrier of the same disease.
The Dor Yeshorim program is comprised of two stages: The initial individual screening,
and the compatibility check for prospective couples. The individual screening is often
accomplished years before there is even thought of marriage, commonly during the high
school years. The screening establishes whether the participant is a carrier for any of the
genetic diseases – and, if so, which one(s). Dor Yeshorim does not provide screening results
to anyone.
The compatibility check should be done as early in the shidduch process as possible,
preferably before the prospective couple meet each other.
A compatibility check allows the prospective couple to ascertain if there is any genetic
reason why the couple should not get married.
Participants do not identify themselves at the time of the screening. Every participant
receives an identifying personal number. The identification number is the only way any
individual is recognized by the Dor Yeshorim system and is the only way to get compatibility
results.
Important:
Dor Yeshorim never keeps participant names. It is imperative that each participant keep his
or her personal identification number in a safe, retrievable location for future use. Loss of a
participant’s number will usually require rescreening.
Again: Dor Yeshorim does not provide screening results to anyone. The only
information Dor Yeshorim gives is the result of a compatibility check of two previously
screened participants, who are not married, are not engaged to be married, and do
not know their carrier status from private testing, and are checking for the purpose
of a prospective shidduch.
The Dor Yeshorim program may NOT be used for any clinical diagnosis or medical purpose.
Identification and confidentiality
Waiting period
For screening done in education institutions and blood donation stations, a participant
typically can request answers for compatibility checking in about three months. If there is an
urgent need for quicker results, the Dor Yeshorim office should be contacted immediately.
A shorter procedure is available that enables the receiving of compatibility results within
three weeks. In very urgent cases only, compatibility results may be gotten within 4 to 7
work days. Faster processing may require an additional fee.
Getting results
When ascertaining genetic compatibility, each side – that of the male AND female – must
contact Dor Yeshorim’s hotline directly at 718-384-6060 and give both personal identification
numbers along with the day and month of birth – not the year! This requirement of both
participants calling in their information decreases the possibility of mistakes.
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
be sure to receive the personal number and date and month of birth from the other party
directly. In cases where the information has been exchanged through a shadchon, the
information, particularly the identification numbers, must be rechecked to ensure that the
correct information has been provided to Dor Yeshorim.
Attention Shadchonim
Our extensive experience has shown that several mistakes may occur when a shadchon is
involved in the process.
To prevent these problems, the following rules must be followed:
1. Any identification number given by a family should be used only to transfer it to the other
party – and only for that particular shidduch. No other use should ever be made with that
number.
2. Immediately upon conclusion of the particular shidduch process, the shadchon must
destroy the numbers and never keep them for “future matches”. In cases of subsequent
shidduchim involving the same individuals, the shadchon must receive the number
anew from the family each and every time!
Important:
A number that was used in any different way than those prescribed may be
canceled and purged from the system. Dor Yeshorim will not be responsible
for any compatibility checks that are made with such a number!
Important:
The exchange of Dor Yeshorim identification numbers does not constitute an
agreement to be married. To prevent emotional anguish, it is imperative to
request the compatibility check as early as possible in the shidduch process.
There is no cost to participants or limit to the number of compatibility checks
requested.
Professional Comments
When is the right
time to join the Dor
Yeshorim Program?
The best possible time is while you are still in high school. In addition
to specially subsidized fees, typically offered at such institutions, early
partacipation in the program prevents emotional stress, anguish and
unnecessary expenses.
Educational institutions that are not currently enrolled in the Dor Yeshorim
program are urged to submit a request for setting screening dates.
Dor Yeshorim Advisory Medical Board
Dor Yeshorim enjoys the constant medical advice of leading genetic
medical experts from the following institutions:
Columbia University
The Albert Einstein College of Medicine
New York University Medical Center
Hadassah University Medical Center, Jerusalem
Thomas Jefferson University, Philadelphia
National Neurology Hospital, London
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to the extrem e duress suffere d by
the family of childre n sick with
advanced degene rative brain
disease. The Dor Yeshor im progra m
saves many familie s untold amoun t
of sufferi ng and pain I have
witnes sed in the days before Dor
Yeshor im came into existen ce.”
Dr. Edwin Kolodney, MD
Head of Department of Neurology
New York University School of Medicine
“…The Dor Yeshorim organizat ion,
and its director Rabbi Ekstein,
already proved themselve s beyond
doubt with their selfless efforts
to promote awarenes s to (genetic
diseases), their unbending
insistence on complete discretion ,
and their ongoing efforts to
simplify the testing procedure and
make it easier. It is an honor for me
to recommen d them before all.”
Dr. Hanna Katan
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Dr. Jay A
London, dler MD
England
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
Main Offices:
429 Wythe Ave.
New York
Hotline: 718-384-6060
Fax: 718-384-2815
Israel Offices:
5 HaMarpe Street, Har Hotzvim
P.O.B. 50458 Jerusalem 91506 Israel
Tel. 02-64 99 888
Fax. 02-64 99 889
Valid from 01.01.11
Dor Yeshorim is a recognized 501(c)3 non-profit organization
58-009-2690 .‫ ר‬.‫אגודת דור ישרים ע‬