WINNING THE WAR AGAINST GENETIC DISEASES One Man’s Life’s Mission

PART I

18 July 22, 2015 Thirty years ago people weren’t aware of Tay-Sachs, the terrifying genetic disease that plagued Ashkenazic Jewry — because the stigma in aff ected families was so great that they would do everything possible to conceal the truth about their children who inherited a genetic illness.

Today the young people in our community — including those at the stage of shidduchim — aren’t even aware of Tay-Sachs because it has been rendered virtually extinct, thanks to one man with a vision, who has fueled his Herculean eff orts with his immense suff ering and with great siyatta diShmaya.

As Dor Yeshorim marks 30 years since its founding, Inyan was treated to an exclusive interview with Reb Yosef Ekstein, its venerated founder. With powerful faith and an indomitable spirit he continues to change the landscape of Reb Yosef Ekstein genetic diseases in Jewish communities the world over.

BY YITZCHOK SHTEIERMAN

6 5775 19 WINNING THE WAR AGAINST GENETIC DISEASES

‘What Do We Know?’ Reb Yosef Ekstein welcomed Inyan to the Dor Yeshorim “WHEN OUR SON offi ces in Williamsburg where a staff of dedicated professionals work every day to ensure the mission that he promised to execute 30 years ago: that not one more couple in Klal Yisrael, Heaven forbid, should know the anguish that he and his family STOPPED DEVELOPING have endured. Among the employees of Dor Yeshorim are some who carefully examine tests and provide compatibility results, while AND LATER ON STARTED others fi eld the many delicate issues relating to individuals concerned with genetic diseases occurring in their families and helping them avert the worst. Still others coordinate mass REGRESSING WE DID NOT school screenings and community-wide testing events, where hundreds of boys and girls may be screened in one day. And then there are homegrown whiz kids — heimishe yungeleit who KNOW WHAT TO THINK.” continue to surprise even veteran industry experts with their innovations and insights into the world of genetics, genetic diseases and genetic screening. Testing done at the lab. Reb Yossel himself remains the ever unassuming Satmar Chassid, as he passionately relates his personal journey … a journey that has become the journey of many Orthodox communities within Klal Yisrael. “We got married in 5723/1963. When our fi rstborn turned about six months old, he stopped developing. Keep in mind that at that time Tay-Sachs, or for that matter other genetic diseases, were simply not on the radar. It was something that nobody dared speak about. Those who were unfortunate enough to be struck by such tragedies did everything humanly possible to hide it — [lest] they wouldn’t be able to make shidduchim for their other children. And so there was simply no awareness and no knowledge. Similarly, diagnosis of genetic diseases was also primitive, even in the medical community. “You must also understand that in der alter heim, back home in Europe, the general mortality rate among children was very high. My own brother was tragically niftar from an ear infection. My father went out to raise the money to pay the pharmacist in town. By the time he returned, the doctor Avenue. The Rebbe’s strenuous would no longer administer it to my brother because he felt avodah throughout the days of the chances for recovery were too slim, and it wasn’t worth and Simchas ‘wasting’ the medication on him. Surely genetic diseases Torah was truly legendary existed then, but we don’t know how widespread they were. — he exerted superhuman There was probably no awareness, and there was certainly eff ort in the hakafos until no possibility of being forewarned about joint carrier status, sundown — and he was so weak that so the majority of the deaths of infants and children went he had to rest his legs on the corner of his couch as he leaned undiagnosed. back with his hat tilted on his head. “When our son stopped developing and later began “I handed the Rebbe my kvittel in which I was mazkir our regressing we did not know what to think. We ran from young child. He studied the kvittel and looked up sadly, saying, pediatrician to pediatrician, most of whom said, ‘He’s just lazy,’ ‘Vus ken men vissen? What do we know?’ Now this was a Rebbe or ‘He’s just taking his time.’ who, a while before, when I was mazkir a woman who had “Then we went to the Rebbe [Harav Yoel Teitelbaum, zy”a]. suff ered a stroke, R”l, the Rebbe waved his hand, saying, ‘Es It was Isru Chag Sukkos at the Rebbe’s home on Bedford iz gurnisht — It’s nothing.’ He could wave away a stroke victim

20 July 22, 2015 and say that it will be fi ne — and it was — and here, with a child our hearts more and more, for we were awfully afraid of the who was regressing and for whom the doctors showed little unknown. We were frightened of each passing day.” concern, the Rebbe had nothing to say! We were devastated! “We ran from doctor to doctor, trying not to leave any Strength and Yeshuos From the Tzaddikim stone unturned. The more the doctors seemed to show no “It was bitter. But what is a Yid to do? apprehension, the more we were fi lled with worry and unease. “We made the decision to keep our son at home for as long When our child was about two, we went to a hospital to consult as possible. We also continued building a family, throwing in with yet another specialist. He stood with his team of interns our lot with Hashem and davening that He would grant us around him, and when he saw the notoriously dreaded ‘cherry healthy children. It took enormous strength to maintain our spot’ in the eye of our child (which is a symptom of Tay-Sachs) emunah and bitachon through those trying times. And indeed he ran out of the room, leaving his underlings to give us the we did merit having healthy children too, burech Hashem. bitter news. It was the fi rst time I heard the words ‘Tay-Sachs.’ “An eitzah that was helpful to me, and I would recommend He couldn’t bear to break the news to us. A mentchliche it to many people today: I would learn, and still do, the entire doctor…, Be’er Mayim Chayim (of the holy Rav Chaim of Chernovitz, “Our lives changed from one of worry and nervousness to zy”a, author of Sidduro shel Shabbos, who is buried in Tzfas in the unfathomable pain of caring for our disabled little boy. the vicinity of the Arizal) on each parashah. The holy words Not too much later, Hashem granted us another child. Our of this giant of Chassidus, and others, truly gave me strength. happiness was short-lived when we suspected the unthinkable. “And then there were the kivrei tzaddikim. Without prior proper diagnosis, we were destined to nurture “This was 35 years ago. There were no fancy, organized and become attached to our precious little child without tours to Europe. But I felt drawn there, to the graves of the knowing if she too would follow in her brother’s footsteps. tzaddikim. I needed to pour my heart out, and I needed a big “And so it was…. We cared for and cherished our newborn yeshuah after undergoing such heartrending experiences. just like any proud parent, not seeing any warning signs, since B’chasdei Hashem, over the years, I did merit many yeshuos they only appear later. But soon enough we noticed! The halt following the many trips that I made to kivrei tzaddikim.” in progress and then the regression was all too familiar.... Reb Yosef recalled: “Today, the tziyun of the holy Rav Our third child was, b”H, healthy. But the next two followed Yissachar Ber of Radoshitz is a great source of yeshuos for the same horrendous pattern! Their adorable fi rst few smiles many, but back then when I began traveling to Poland … their innocence … the fi rst few milestones … all shattered in the ’70s, its location was unknown.

Israeli headquarters 15 years ago.

6 Av 5775 21 WINNING THE WAR AGAINST GENETIC DISEASES

“This was the beginning. This kept me going. We saw great salvation through davening at the kevarim of tzaddikim, and if I’m allowed to say this, it is these zechuyos that have lent a special siyatta diShmaya to our work over these three decades.”

The Historic Pledge: ‘Never Again’ Caring for children with Tay-Sachs is daunting and excruciating. In a nutshell, the child is born with no ability to produce an enzyme that is responsible for breaking down fatty acids that accumulate abnormally in cells, especially in the nerve cells of the brain and spinal cord. During the fi rst period of time after birth, some of the enzyme is still retained from the mother. As time goes on, the enzyme gets depleted, and thus, the child starts to deteriorate, loses mobility and degenerates progressively. This is almost unbearable for parents to watch. Drawing blood for the tests. Reb Yossel related a little of what it was like to care for four Tay-Sachs-affl icted children, and the terrible emotional pain Having perused the sefer Sabba Kadisha, which expounds on he endured while standing beside them in their suff ering. his greatness, and the miracles people had merited by coming “When I would walk through the door, my son would to his tziyun, I felt drawn to this tzaddik, and so I resolved to recognize me but, unlike any other child his age, he was unable search for his kever. to show his excitement. He was not capable of running over to “But where is Radoshitz? (This was before the days of give me a warm hug, nor was he able to communicate with Google Maps.) I went to see the Sadovner Rav, zt”l [Harav words. This caused him to become tremendously agitated, Yisrael Sekula, who had a shul on Fiftieth Street in Boro Park], breaking my heart into a million pieces. There is nothing as who was originally from Poland. The Rav took out a map, and horrible as watching one’s child deteriorate in front of you. began looking at it, and his tears welled up and began poring “It began with fl oppy muscle tone, then he couldn’t onto the map. He explained: ‘Look at this map. Every speck of swallow, and soon it progressed to seizures, paralysis, mental this landscape hummed with Jewish life. How can I not cry?’ retardation and blindness. Eventually, it became too much for He pinpointed the location, and with this information in hand my family and me to care for our son, thus throwing us into my search began. I traveled to Radoshitz, and for seven years the agonizing position of deciding to fi nd other arrangements I would go to the site of the cemetery — which looked like for his care. Eventually we found a kindhearted Yiddishe nothing more than an overgrown fi eld — but could not locate family who took him in and cared for him in his fi nal years.” the grave. Reb Yossel continued, “There were hundreds of families “Each year I would return there, yet each year I was like mine who suff ered unimaginably as a result of Tay-Sachs. unsuccessful. But on my seventh visit, my good friend Reb With each child that was born, there was renewed anxiety, Mendel Reichberg, z”l, who was the trailblazer in regard to and new questions, but they did everything possible to hide visiting kivrei tzaddikim in Eastern Europe, advised me to it all, lest people would not want to make a with speak to a friend of his who was in Poland at that time. He their normal off spring. In fact, I knew a family in which two was fl uent in the language, and would be able to help us in brothers had grandchildren with Tay-Sachs and each was our search. After he spoke to many of the elderly locals, one unaware of his brother’s plight.” of them began pointing to a certain area, shouting ‘Kvittu, Back in the ’70s, despite not knowing what, if anything, kvittu.’ could be done by way of prevention, Reb Yosef was willing “It turns out that the word kvittel is derived from the Polish to face up to his nisayon. Constantly on the lookout for word kvittu, which means ‘paper.’ He was trying to tell us that information, he helped anyone in the community who shared people would come from all over to bring kvitlach to this site, this travail. “It came to my attention that a shidduch was which was indeed the burial place of the holy Radoshitzer. We being proposed for someone in my family with a girl from anxiously started digging around the site until we discovered another family that had a child ill with Tay-Sachs. Anyone the foundation of the ohel. When I returned to America, I who knows anything about genetic diseases will know that a confi rmed my fi ndings with the Voidislover Rebbe, who was a situation like this may turn out to be a catastrophe — and I grandson of the Radoshitzer Rebbe and was named after him. was not going to let it occur. I was panic-stricken, because I

22 July 22, 2015 understood what this meant. I fi nally persuaded them to go family members of aff ected children were vehement in their and ask the Satmar Rebbe for his opinion. opposition to testing. The Gedolim were concerned too; they “The Rebbe was already not well. He looked up and said in feared that revealing carrier status could cause unnecessary Yiddish, ‘I don’t understand the question. Something that can stress and anxiety and cause more harm than good. be avoided, why not avoid it?’ He repeated this three times, “Yet, when I realized that there might be hope on the astounded at the question. Needless to say, I had a good horizon and that there was a possibility for detection and advocate for my cause,” recalls Reb Yosef. prevention, I was determined to make it work. And so, I made “Our fourth child who endured the terrible disease was a promise: I would do everything humanly possible to ensure born on of 1982 and was niftar two years later, on Purim that not one more Yiddishe kind would know the suff ering of ’84. Experiencing the heart-wrenching pain yet a fourth that we have endured!” recalled Reb Yosef emotionally. time, I was determined to do something about it. I became Rabbi Ekstein, with a few dedicated askanim, countered acquainted with the physician who had diagnosed and the objections to widespread screening with a proposal for cared for our son at Mount Sinai, and through him I began a community-based program that could provide absolute designing a plan, one that turned out to be the fi rst draft for confi dentiality to those tested. The novel structure of the Dor what is today Dor Yeshorim. Yeshorim program allowed all young couples considering “There was a test in existence that could detect whether a marriage to be protected from the risk of having a child person is a carrier of the Tay-Sachs gene. However, the test with Tay-Sachs disease, while also protecting the identity of was not utilized by our community as it focused on testing carriers in the community. individuals who were already married. What would an “And so I began seeking the advice and support of the observant couple do in the event they found out they’re both Gedolim and spreading the word among family and friends.” carriers? But, we thought, what if the same testing could be performed before marriage? The Gedolim of a Generation Ago “Yet it wasn’t so simple. At the time, many in the community “Support and encouragement from the Gedolim came held the view that testing was a violation of the tenets of soon and emphatically, and we called many a meeting with bitachon. In addition, they feared that once their carrier Rabbanim. Having their backing and guidance at the time status was revealed, no one would want to make a shidduch was crucial, since people were still very confl icted. The with anyone in their families. In particular, unbelievably, Gedolim struggled to fi nd the proper balance in the approach

“I MADE A PROMISE: Israeli headquarters 15 years ago. I WOULD DO EVERYTHING HUMANLY POSSIBLE TO ENSURE THAT NOT ONE MORE YIDDISHE KIND WOULD KNOW THE SUFFERING THAT WE HAVE ENDURED!”

6 Av 5775 23 WINNING THE WAR AGAINST GENETIC DISEASES

to testing to ensure that it would indeed resolve the issues and not bring harm to those it was seeking to help.” Now, 30 years later, Reb Yosef marvels at the foresight and breadth of those great Rabbanim. He related that Harav Moshe Feinstein, zt”l, in his responsum on the issue of testing and how it should be done, wrote in a way that indicated his deep and clear understanding of this issue decades ago, before we knew very much about it, and when the science behind it was not yet established in this fi eld. In what would become the strongly held policy of Dor Yeshorim, Rav Moshe wrote that carrier status should not be revealed to people taking the test. It would place an unnecessary Rabbi Ekstein in the lab. psychological strain on them. They may think they can handle knowing their carrier status, but people at this stage in life are Can one fathom the extent of the damage that would be done not mature enough for this. In later years, in what would come to the entire community should this wall be breached? This as close to an endorsement as possible, Rav Moshe wrote: “Dor would in essence create a “sub-class” in Klal Yisrael, in which Yeshorim, which functions in accordance with my previous 25 percent of the community would face severe diffi culty in ruling…” getting married, chas v’shalom!” “The Gedolim understood the common person, and It is just such a catastrophe that the holy Gedolim foresaw understood how to bring Halachah to them in a way they could all those years ago when they implemented this system, and absorb. Some people think that the Satmar Rebbe, zy”a, was an it is the holy mission of Dor Yeshorim to uphold it in the most extremist, but whoever was privileged to be in his dalet amos stringent manner. The information is never revealed — not saw a man full of compassion who overfl owed with ahavas even to the Dor Yeshorim staff ! Rather, they deal only with a Yisrael and who took everything, the whole person, into account sophisticated number system. when rendering a halachic decision,” observed Reb Yossel. ‘It’s Dor Yeshorim’s Daughter’ The Call From Manchester This international organization, which today facilitates close Another great source of support and guidance was, as Reb to 25,000 compatibility answers per year, was begun using one Yossel describes it, “the call from Manchester.” Harav Yehudah telephone and one handwritten ledger — with Reb Yossel and Zev Segal, zt”l, the great alumnus of the Mir in Poland, and Rosh his wife (and a handful of volunteers) serving as the secretarial Yeshivah in Gateshead, called Reb Yosef one day to request that facilitator, the liaison between the laboratory and the families Dor Yeshorim add another test to their current range. — and anything else that was required. Speaking of the rulings that those Gedolim set forth, Rabbi “People would call our home phone for anything related to Ekstein said, “Over the years some have sought to question our this work. Once, my young daughter picked up the phone. To policy of confi dentiality — keeping the ‘carrier status’ secret, the caller who asked, ‘Is this Dor Yeshorim?’ she innocently even from the people themselves. It should be enough to say replied, ‘No, it’s Dor Yeshorim’s daughter,” Reb Yosef related that this is the way the Rabbanim of the time, and of today, have with a smile. seen fi t. But I present to you the following: This anecdote, one of many that fl owed from Reb Yosef as he “One in four people carries the of a genetic disease reminisced, is perhaps a greater indication of the wholehearted that we test for. This means that 25 out of 100 individuals dedication and mesirus nefesh with which this organization walking around in our communities, respected mechanchim, was started than about the cleverness of his young daughter. Rabbanim, baalei batim, askanim and your average Yid, have a “It consumed us,” he said, “and it still does.” 25-percent chance of carrying a disease mutation, which, if he marries another person who happens to have the same mutated ‘Learn From This Beard’ gene, risks having one out of four of their children stricken with Next the task was to begin changing the public’s perceptions the disease. But there is nothing wrong with them, and they can and convincing people to abandon their misgivings. marry anyone else as long as the other person does not carry Persuading people to be tested and to go along with Dor that gene, i.e., they are compatible (as are 99 out of 100 couples). Yeshorim was a most challenging endeavor. It presented “Now, suppose that somehow this most sensitive unique challenges within each community, within the various information of carrier status leaks, and it becomes known that sectors of Ashkenazic Jewry, and within each city and country. So-and-so is a carrier of a disease: Can anyone say with a shred “At that time I would go from community to community, of honesty that this will not aff ect shidduchim for that person? yeshivah to yeshivah, and from school to school, imploring

24 July 22, 2015 Anatomy of a Gene Genes dictate everything about the human being; from When both members of a couple are carriers for the the color of a person’s eyes, skin, and hair to inherited same disease, there is a 50-percent chance that the health conditions, and everything in between. When a father will transmit the defective, or mutated, gene, and change happens in one’s there is a 50-percent genetic makeup, it dictates chance that the mother changes in the person’s will transmit it. Should physical being. This Unaffected Unaffected both parents transmit “change,” or interruption in “Carrier” “Carrier” that defective gene, their the regular sequence of the Father Mother child has a 25-percent gene, is called a mutation. chance of being born Each specifi c mutation with that disease — one dictates a diff erent genetic in four children! R r R r condition or disease. This So when we can mutation, or abnormality, determine that one is transmitted to one’s of the parents is not r r r r children. R R R R a carrier, it will not Mendel’s Law of be possible for their Inheritance, named for children to have that Gregor Johann Mendel, disease. Their child may the 19th-century Austrian still carry the defective scientist who founded gene, but will not have the modern science of the disease. The mission genetics, states that one of Dor Yeshorim is to single gene mutation ensure that two carriers can serve as a carrier for Unaffected Unaffected “Carrier” Affected of the same disease- 1 in 4 chance 2 in 4 chance 1 in 4 chance a disease. A carrier for a causing mutant gene will recessive genetic disease has a mutation that lies dormant, not marry. While the defective gene may continue to having no impact on the individual’s health unless it is be transmitted for generations, there will never be two combined with another mutation of that same gene. of the defective genes transmitted to one child.

young people to be tested. People were afraid of the unknown. be tested. He had not taken the issue seriously, thinking The conventional wisdom of the time was that we were all it wouldn’t happen to him. Now, after losing one of his better off not knowing. My job was to disabuse them of that idea children to Tay-Sachs, R”l, he fi nds himself in the horrifi c and explain that with time, if we attack this properly, we can position of fi nding out the hard way that he and his wife are eliminate these diseases,” he recalled. both carriers. “There was one specifi c community which I had diffi culty “There was nothing I could do for him, though my heart getting into. I sent them letters, and I called them many times, bled for him,” recalled Reb Yossel. The early history of Dor but I wasn’t getting through. Finally I approached a Rav from Yeshorim is full of such anecdotes about people who did not that community and asked him to allow me to say a few words heed the call of this “Paul Revere” of Jewish genetic diseases to the bachurim. I walked into the yeshivah and said to the and later suff ered the dire consequences. But ultimately, bachurim, “You see this beard? It is white because it has been baruch Hashem, our community as a whole adopted his through a lot. You don’t have to go through what I went through. mission. You can be yoitzei with me [benefi t from my suff ering]. Learn If there is one basic idea that can describe the drive that Reb from this beard … have yourselves tested!” Yossel feels in this work that is now three decades old, it is this: Incidentally, a bachur from that yeshivah approached “Learn from this beard.”  him a few years later and told him that he had neglected to Part II will appear, iy”H, next week.

6 Av 5775 25 WINNING THE WAR AGAINST GENETIC DISEASES One Man’s Life’s Mission

PART II

42 July 29, 2015 In Part I of this article Reb or Yeshorim has succeeded beyond the wildest dreams of its founders. “When I began,” Rabbi Yosef Ekstein related the Yosef Ekstein said, “I told myself that my greatest goal was to prevent 20 percent of Tay-Sachs births. unimaginable suff ering he DThe only explanation for the unbelievable success and his wife endured in having and universal acceptance of the Dor Yeshorim program in Jewish communities throughout the world — four Tay-Sachs babies. Thirty not a simple accomplishment — is supernatural siyatta diShmaya, the guiding Hand of Hashem constantly years ago the science of throughout these years. Without this siyatta diShmaya we genetics was not as developed could not have accomplished any of this.” This was validated with the tremendous milestone of as it is today, and the Jewish the offi cial closing of the Tay-Sachs ward at ’s Kingsbrook Jewish Medical Center, an event that served as community tended to hide the unequivocal proof of the historical impact of this one man’s occurrence of genetic diseases. mission. In a letter to Dor Yeshorim in 2008, Dr. Hua-Chin Chen, Rabbi Ekstein channeled his the director of Pediatrics at Kingsbrook who was in charge suff ereing into the formation of the Tay-Sachs ward, wrote: “Dear Rabbi Ekstein, We have met many years ago, and I just wanted to write you of an organization that has a fi nal chapter regarding Tay-Sachs disease. As you know, Kingsbrook Medical Center had one of the largest Tay- practically banished Tay-Sachs Sachs wards…. Through your aggressive and other genetic illnesses system to prevent this serious medical problem, we have eliminated this disease…. from our lexicon. “Our last Tay-Sachs patients passed away fi ve years ago and there have been no admissions since. I am grateful for your success and the support of the Jewish communities.” BY YITZCHOK SHTEIERMAN Accuracy and reliability The hallmark of an organization that has earned the trust of the Jewish community worldwide has been the ability to rely absolutely on the results of their tests. Getting there was a long journey. The initial detection of genetic diseases was done by an enzyme assay, which would measure enzymatic activity in the serum or white blood cells of an individual. Tay-Sachs disease is caused by the absence of a vital enzyme in the RebReb YoYosefsef gene called hexosaminidase (Hex-A). A person without EkEksteinstein the enzyme will have a fatty substance accumulating abnormally in cells, especially in the nerve cells (neurons) of the brain and spinal cord. This ongoing accumulation leads to the destruction of these neurons, which causes Tay-Sachs. We all have two copies of this gene. If either or both Hex-A genes are active, the body produces enough of the enzyme to function normally. Carriers of Tay-

13 Av 5775 43 WINNING THE WAR AGAINST GENETIC DISEASES

A mass screening in Boro Park this year.

Sachs have one copy of the inactive gene along with one Leaving Nothing to Chance copy of the active gene; they are healthy and function Reb Yosef recalled the early days, when the hospital which normally. However, a child who inherits two Hex-A genes he was working with at that time had a long turnaround (one from each parent) produces no functional Hex-A time, and people were not willing to wait that long before enzyme and develops Tay-Sachs disease, R”l. concluding shidduchim. So he decided to split the blood There were many drawbacks to using this method of samples. He sent away some to the laboratory at another detection because the borderline in determining whether prestigious university hospital to see what they would someone is a carrier or not was volatile. Results from answer, while cautiously keeping his connection at the fi rst carriers and non-carriers overlapped, and were sometimes institution. When the results came back, he compared them misleading. In addition, there were cases of people who were and they alarmed him greatly: there were 18 discrepancies on certain medications (or had certain health conditions), in the results! At a loss, he sent the same blood samples back which would distort the test results. This resulted in many to each of the labs, and lo and behold, the second institution cases where retesting was necessary, and results were often returned the same results, while the fi rst hospital now also inconclusive. provided the correct results. A much more accurate detection of a is Evidently, the director in charge of the hospital lab achieved by evaluating the gene itself by DNA screening. thought he could pull the wool over the eyes of this novice Geneticists will gather a number of aff ected volunteers for with his beard and peyos. He attempted to convince him a study each of whom are carriers of a particular genetic that it was possible to be a carrier one day, and not the next. disease. Taking a sample of their DNA, the scientists study “This was very distressing and confusing for me, and I it, seeking a common genetic mutation among all carriers knew we had to do something about it,” Reb Yosef recalled. of that disease. Once they identify the correct mutation, “I had a mission. And that mission was to ensure that no they can then screen others for these same mutation and one in our community would ever suff er with a genetic know with much greater certainty and scientifi c precision disease. And so ‘almost certainly’ did not count. I knew I whether they too are carriers of the disease. had to do everything in my power to make the system of “DNA screening was a relatively new phenomenon testing, as well as all the procedures involved, as foolproof developed a few years after we started testing. So the latter as possible.” method, biochemical detection, was the accepted approach.” This early trial infl uenced the way procedures have been

44 July 29, 2015 implemented and still function at Dor Yeshorim to this day: hospital in Yerushalayim said to me, ‘One in a thousand is The entire screening operation, from beginning to end, an acceptable statistic.’ But for Dor Yeshorim it is not: We is under very tight control. For every few blood samples thrive on trust, mutual trust with a community that entrusts submitted to the lab for testing, one of them is a control their shidduchim to us,” asserted Rabbi Ekstein. sample — previously tested. When the results come back, the results of those samples are compared to the results A Reciprocal Trust that were given previously to ensure that exact results are Speaking of trust, Reb Yosef explains that trust goes both received each time. ways, and community members must conduct themselves The sophisticated system at Dor Yeshorim checks and with reciprocal trust. “This is something that the general rechecks, and keeps track of these controls to make sure public, especially shadchanim, must understand and that the lab is returning consistent results. Codes are respect. given, and multi-tiered and redundant controls are all in “Often, we get calls from frustrated individuals, wanting place so that chas v’shalom not one wrong answer is ever the results immediately. What they don’t understand is that returned to a family. Each piece of information in the entire we have protocols and processes that have been developed process is entered into the system by two separate during 30 years of experience — for their own good! This individuals, and any discrepancy must be resolved includes steps related to confi dentiality, and ensuring that by yet another person. An employee cannot enter any data the two numbers being checked indeed belong to the two before he has undergone rigorous training. people in question, and not someone else’s number. This B’chasdei Hashem, now, decades later, with is also why we will only give results to the phone number close to 400,000 individuals tested, and close to given at the time of screening. In addition, results will not 300,000 compatibility requests for shidduchim on record, be given to one party alone; if only one party calls, the other Dor Yeshorim sets an industry standard as it continues party will be notifi ed of the compatibility request, to ensure to operate a foolproof system with utmost diligence and that the two numbers checked indeed represent the two accuracy. parties involved in the shidduch. Nevertheless Dor Yeshorim does not rely on technology “Occasionally we have instances where people don’t alone. “Our policy is that for each answer we give, there are grasp the seriousness of carrier compatibility, and they two diff erent people who verify the computerized results. call with numbers that are not theirs (either one that the Do I go beyond the call of duty? That would depend on shadchan erroneously gave them, or they unintentionally whom you ask. The chairman of our medical advisory board, use numbers from a previous shidduch). Too many times, Dr. Edwin Kolodny, head of Neurology at NYU, once told we receive compatibility inquiries with one of the parties me, ‘Rabbi, no one does this.’ A professor at a prestigious not even aware of the shidduch. They certainly do not

“OUR POLICY IS THAT FOR EACH ANSWER WE GIVE, THERE ARE TWO DIFFERENT PEOPLE WHO VERIFY THE COMPUTERIZED

Dedicated RESULTS.” phlebotomists.

13 Av 5775 45 WINNING THE WAR AGAINST GENETIC DISEASES

realize the potential damage they Ashkenazic and Sephardic ! can be causing. Baruch Hashem, with “NO AMOUNT OF “Thus, in Klal Yisrael today — all our protocols in place, we catch especially in Eretz Yisrael where these mistakes. People call us at the PRESSURE CAN MOVE marriages between Ashkenazim and very last moment, when they’re under Sephardim are common — people must the stress of fi nalizing a shidduch. be tested for both sets of mutations.” No amount of pressure can move OUR COMMITMENT TO DO Indeed, Reb Yosef related that just our commitment to do our mission the previous day, a girl whose father properly, a mission that is ultimately OUR MISSION PROPERLY, is Sephardic but whose mother is for their own good. This is why we Ashkenazic called the offi ce. She had to urge the public to check numbers be persuaded that she is just as much at early in the shidduch process.” A MISSION THAT IS risk of being a carrier of an Ashkenazic disease — potentially transmitted by A Changing Landscape ULTIMATELY FOR THEIR her mother — and should she marry an With so much focus on the genetic Ashkenazic boy, she would be at risk diseases aff ecting the Ashkenazic OWN GOOD.” for transmitting a disease. community, what about Sephardic Over the past several years Dor ? “There are many factors Yeshorim invested considerable that diff er in the nature of genetic diseases in the two resources in researching and developing reliable testing communities. methods for the genetic diseases that are prevalent in “Although the diseases and mutations that Dor Yeshorim the Sephardic community. They now off er screening for tests for are prevalent primarily among the Ashkenazic an additional 13 illnesses in addition to the Sephardic community, people who are not Ashkenazic can also be mutations for which they have already been screening. carriers of these diseases, although the carrier rate is lower. The new Sephardic disease panel is in the advanced However, individuals of Sephardic decent may be carriers developmental stages now, but is not yet ready to be of diff erent mutations and other diseases prevalent in their implemented in standard tests. However, screening for community.” In addition, some people may not understand these diseases can be ordered by special request by calling that if there is even one Ashkenazic or Sephardic ancestor the Dor Yeshorim offi ce. anywhere in their lineage, they are at risk for both the

U.S. headquarters from where calls are returned to places over the world.

46 July 29, 2015 Expanding the Test Panel In their quest to eliminate other genetic diseases, Dor to call them as early as possible (even before entering the Yeshorim continuously seeks to replicate the success they shidduchim stage) to voluntarily request that their fi le be have experienced with Tay-Sachs. The current panel of updated to include the optional panel of tests. All it takes tests detects nine severe diseases that run the gamut of is one phone call, because usually another blood sample is neurological, neuromuscular and metabolic diseases, to not necessary. those aff ecting other parts of Rabbi Ekstein told us, “Just the body — all of which are because a test exists for a debilitating, and very often fatal. particular disease does not Dor Yeshorim initiates mean that every member of Klal many research projects at a Yisrael should be screened for cost of tens of thousands of it. A careful evaluation of the dollars, and organizes teams disease, including how fatal and of clinicians, scientists and debilitating it is, is conducted bioinformatics experts with the before any additional test goal of identifying additional appears on the panel. disease-causing mutations found “If we test for a disease, but we Robotics at work. in Jewish genes from diff erent are not confi dent enough that it ethnic groups. This research eventually results in new tests is reliable, we cannot in good conscience tell people that and the prevention of further tragedy in Klal Yisrael. they are compatible based on such a test. Dor Yeshorim has recently introduced a secondary, “We will only test for diseases that present serious health optional panel in which people can choose whether to be issues and for which there is no cure. Rather than being tested for another group of diseases that is not part of the an organization that is here solely to test for a long list of standard panel. In the past, every time Dor Yeshorim added diseases, we recognize that we are an integral part of Klal another test, many shidduchim were held up since the fi les Yisrael’s shidduch process. And that is a weighty responsibility needed to be updated. They therefore encourage people indeed.”

Focused on the Individual ‘Why I Was Spared’ Dor Yeshorim does not stop at basic carrier screening. Reb Yosef Ekstein was born in Budapest 1944. There are many families in our community who experience “Those were terrifying times. The Nazis were the devastation of having children succumb to rare genetic advancing and the Hungarians were no angels diseases that are not on the standard Dor Yeshorim panel. either. You know, the Gemara says that the passuk in Understandably, they turn to Dor Yeshorim for help and Tehillim, ‘Ki alecha horagnu kol hayom — We have been guidance to prevent the recurrence of those diseases. This is slaughtered all day for You, Hashem,’ an entirely separate wing of Dor Yeshorim, in which hundreds refers to the mitzvah of bris milah. You of thousands of dollars are invested each year. “We intensively can ask: Why, of all mitzvos, is this one that we investigate the family tree, testing up to four generations were slaughtered for? I can tell you that my and researching the genes and mutations that produce those mohel was no longer among the living diseases, which can then allow us to arrange for preventive two days after performing my bris in testing.” Budapest. Yet I, an eight-day-old infant, was spared, and At any given time, Dor Yeshorim is researching multiple my parents managed to escape with me into Romania. diseases, which requires enormous time and eff ort, as well as “My parents, who possessed tremendous emunah and funds needed to pay the laboratories and universities involved bitachon, and were wholehearted, passionate supporters in identifying the origin of these diseases. All this is done with of Dor Yeshorim, would always tell me, ‘Yossel, you were utmost dignity and confi dentiality. spared for a purpose.’ And so I believe. The Eibershter spared Very often, through these eff orts, serious diseases that are me. He has decreed for me great pain, but I believe it was for found to occur in our communities then become part of the a purpose, that of helping to eliminate pain from others, and regular panel — which means that everyone going forward will I will continue to do everything to help His children for as be tested for carrying those diseases as well. long as He gives me the strength.” 

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