בס"דSephardic Edition
A Family Health & Wellness Magazine Featured inside! Premarital Genetic Testing for Sephardic Jews Page 2 It Happened to ME Page 3 Endorsements from Sephardic Chachamim Page 4 True or False Page 6 Dor Yeshorim By the Years Page 8
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Dor Yeshorim: Eliminating the incidence of fatal & debilitating recessive genetic diseases & assisting families who have children affected with genetic disorders. Offsprings Editorial Premarital Genetic Testing It happened for Sephardic Jews To Me! Orly’s Story rly Dror-Azuriel is a Sephardic mother of three living in Israel. She is passionate about the importance of pre-marital testing in the Sephardic community: her son Orel, Owas born with Ataxia-Telangiectasia (AT), a rare genetic disease. Like Rabbi Eckstein, the founder of Dor Yeshorim, who lost four children to Tay Sachs, Orly’s personal tragedy drove her to found the Association Tell us a little about yourself. for Fighting AT Disease. Through it, she provides My name is Orly Dror-Azuriel. I’m in my 40’s, mother to clinics support, guidance and education to families Orel and two sweet girls. I live in Givat Shmuel. Before across the country. She is determined to eradicate AT Orel was born, I was studying at Bar Ilan University. I by encouraging all Sephardim across the globe to join never dreamed that one day I would be involved in running their Ashkenazic counterparts in organizations or opening clinics in hospitals. Other than considering Dor Yeshorim caring for Orel, most of my time is spent working with the a non-negotiable rite of Association, I started to support others fighting AT disease. passage for children entering shidduchim. When did you first notice something was wrong with Orel? When Orel was about seven months old, he started sitting; but he needed pillows for support. When he began to walk it was very clear that something wasn’t right; he was weaving from side to side like a drunk. Then he developed very red eyes. DorYeshorim.org How long did it take to receive a diagnosis? US HEADQUARTERS Until Orel was four, we had no clue what was wrong. With incredible Divine Intervention, our regular physician 309 Rutledge Street wasn't available for Orel’s four-year checkup. I remember Brooklyn, NY 11211 the doctor on duty asking me, “Why are his eyes red?” 718-384-6060 When I told her that Orel had an eye infection that [email protected] wouldn’t go away she surprised me by asking him to walk ISRAEL HEADQUARTERS to the end of the hall. She noticed his strange walk and immediately wrote up referrals for further testing. Rechov Hamarpeh 5 Those tests ultimately led to the diagnosis. Har Hotzvim Jerusalem, 91506, Israel Continued on Page 10 Office (02) 649-9888 718.384.6060 • 309 Rutledge Street, Brooklyn, N.Y. 11211 DorYeshorim.org / 718.384.6060 3 4 Offsprings Offsprings
he Chacham shared his personal pain; a close and Roshei Yeshiva; including: Harav Yaakov Hillel, Harav friend whose child was born with a genetic Shimon Badani, Harav Moshe Mayah, Harav Reuven Elbaz Endorsements from disease that could have been prevented had and Harav David Yosef (the son of Harav Ovadiah zt’l), shlita. he and his wife undergone genetic screening Below is an excerpt of just one of the letters penned for the before getting engaged. The Chacham had community at large: Tspoken and the wheels of change began to slowly turn. וכבר חוקק במשענתו מרן המאור הגדול הראשון-לציון ומרא דארעא דישראל מרנא ורבנא’ הגר"ע יוסף זצוק"ל במכתב קודשו לאמור: "שהם עוסקים It is understandably difficult and challenging to change a בדברים שהם ברומו של עולם, ומחזק את ידיהם, שהבחורים והבחורות strongly held conviction. For so many years, the Sephardic העומדים להינשא יעברו את הבדיקות, כדי שלא יאונה להם כל אוון, ויזכו community had been approaching marriage, thinking genetic לזרע ברך ה'. ויעשו את כל זה יפה שעה אחת קודם", עד כאן לשונו הקדוש. Sephardic testing did not apply to their children. However, as more והנה יש החושבים לפי תומם שמחלות גנטיות שייכות רק באחינו בני and more highly regarded Chachamim within the Sephardic ישראל יוצאי אשכנז, אלא שהאמת תורה דרכה שגם בקרב יוצאי קהילות Chachamim community came forward to endorse Dor Yeshorim and urge המזרח, בני עדות ספרד המפוארות לשם ולתהילה, נחלו ילדים במחלות all Sephardim to be tested, the tides began to turn. Powerful גנטיות חשוכות מרפא הע"י רח"ל Even as many Sephardic parents reached out to endorsements came from several Sephardic Chachamim Dor Yeshorim, the lack of awareness for the need of In his statement regarding this crucial matter, the Gadol It is proper and fitting for all bnei and bnot Yisrael, Dor Yeshorim testing remained the persistent norm. Hador Maran Harav Ovadia Yosef zt”l said: “These people are involved in highly important work and I agree with them both from Ashkenazic and Sephardic sectors, who are, That changed in May of 2015, when Chacham fully that a young man and woman of marriageable age G-d willing, on the brink of building Jewish homes to Yitzhak Yosef, shlita, called upon all Sephardim should undergo this testing in order to prevent whatever approach the above Association and carry out the said to be tested through Dor Yeshorim. tests which has potential to save them immeasurable disease can be prevented and to be blessed with healthy pain and affliction. Through this, they will merit children. And all this should be done as early as possible.” building a bayit ne’eman b’Yisrael and be blessed Those who erroneously believe that genetic diseases are with beautiful Jewish generations, dorot yesharim I hereby endorse Dor Yesharim Association which only relevant to the Ashkenazic community should be aware mevorachim, and everlasting homes, a binyan adei ad, engages in heavenly work, and I reinforce that that in Sephardic communities as well, there have been zerah beirach Hashem. the young men and women who are considering cases of children born with devastating genetic illnesses, I hereby extend my heartfelt blessing to the wonderful marriage should undergo these tests, so they rachmana litzlan. people involved in this holy endeavor. May they should not be stricken with any trial, and they shall merit boundless goodness and blessing; children, life, merit blessed children. And they should do this as To the left and below: prosperity and longevity. May it be the will of Hashem soon as possible, and especially when they are in Endorsements of prominent Sephardic as well as Ashkenazic that they shall never err, and may the Divine Presence yeshivah. It is a great mitzvah to assist the said Rabbis and Roshei Yeshiva in support of Dor Yeshorim. escort all their endeavors. Amen! Association with generosity and an open hand. With best wishes for a blessed, good year, and may May all who donate to this Association you merit long and pleasant life. be blessed with great bounty, children, — Chacham Yitzhak Yosef life and prosperity. Rishon Lezion, Chief Rabbi of Israel Amen! — Chacham Ovadia Yosef, zt”l
Above and to the right: Excerpts from original Hebrew letters written by Chacham Ovadia Yosef zt”l and Chacham Yitzchak Yosef.
DorYeshorim.org / 718.384.6060 5 Offsprings Offsprings
that all Sephardim are being tested for DISEASES in addition to the Ashkenazic diseases COMMON BY FREQUENCY Achromatopsia - Iran Total Color-Blindness A Achromatopsia - Syria True or Total Color-Blindness B* Ataxia Telangiectasia Morocco/Yemen/North Africa 1 out of 80 Congenital Adrenal Hyperplasia* Syria False: Severe form Genetic Diseases in the Costeff Syndrome Iraq Sephardic Community? Cystic Fibrosis (Sephardic Mutations) All Sephardim 1 out of 55 Cystinosis Morocco 1 out of 100 Dor Yeshorim has been conducting pre-marital genetic screening for the Klal since 1983. Developmental Encephalopathy* Syria Fanconi Anemia Type A Morocco/Tunisia 1 out of 100 Why then, was the organization first making waves in the Sephardic community in 2015? Hereditary Inclusion Body Myopathy* Iran 1 out of 12 Infantile Cerebral Caucasus, Georgia, Turkey, Iran 1 out of 20 and Cerebellar Atrophy (ICCA) ince its inception more than had been born with genetic diseases that were in fact, Leigh Syndrome 1* Syria thirty years ago, Dor Yeshorim avoidable. has worked tirelessly to develop Megalencephalic Leukoencephalopathy Libya “The contrast was stark and very sad”, shares Rabbi the testing methods necessary to detect the most with Subcortical Cysts Ekstein, founder. prevalent recessive genetic diseases within our Jewish Metachromatic Leukodystrophy Yemen/Syria 1 out of 50 Scommunities. “On one hand, we had a large percentage of the Sephardic A Devastating Misconception community who felt that Dor Yeshorim testing did not Methylenetetrahydrofolate Reductase Bukhara (Uzbekistan) 1 out of 39 apply to them. Parents were allowing their children to (MTHFR) Unfortunately, for many years, it was erroneously marry without conducting any genetic testing. thought that genetic diseases do not occur in the Mitochondrial Neurogastrointestinal Iran Sephardic community. In fact, due to the close-knit On the other hand, several Sephardic families had Encephalopathy actually reached out to Dor Yeshorim in terrible anguish; bonds of the Sephardic community, where common Polyglandular Disease Iran/Iraq 1 out of 50 practice has Sephardim marrying Sephardim, the crying and desperate for assistance for their children who prevalent genetic diseases were in reality becoming were born with terrible genetic diseases, including MLD, Pontocerebellar Hypoplasia Morocco increasingly more common. Cystic Fibrosis, mental retardation, vision and hearing Type 2E* loss, and many others.” So, although the misconception regarding a lack of Progressive Cerebello - Iraq/Morocco 1 out of 40 pre-marital testing remained, more and more Sephardic Dor Yeshorim was formed with a singular mission: Cerebral Atrophy parents began reaching out to Dor Yeshorim, quietly yet to protect generations of Klal Yisroel. Roborts Syndrome* Syria desperately seeking assistance with their children who Regardless of the popularity or lack thereof, they developed a specialized Sephardic panel to screen for Tay-Sachs (Sephardic Mutations) Morocco/North Africa 1 out of 80 diseases prevalent in these communities. Utilizing the “Several Sephardic families had actually reached Usher’s Syndrome Type 2 Iraq/Iran/Bukhara (Uzbekistan) 1:25-1:50 out to Dor Yeshorim in terrible anguish; crying existing data of thousands of DNA samples, Dor Yeshorim dedicated countless hours, resources and money to Fridrich Ataxia** Syria and desperate for assistance for their children develop reliable testing for the Sephardic community, who were born with terrible genetic diseases.” that would meet the organization’s rigorous standards. Spinal Muscular Atrophy** (SMA) All Sephardim 1 out of 40
6 * These diseases were added to the panel in July 2017 DorYeshorim.org / 718.384.6060 7 ** Diseases we currently test for by special request Offsprings Offsprings
or Yeshorim began over pre-marital genetic screening organization, at thirty years ago as a grass the forefront of genetic research and prevention. roots organization, seeking to, and eventually Headquartered in New York and Jerusalem, Dsucceeding, in preventing the occurrence Dor Yeshorim serves the global Jewish of Tay-Sachs in our communities. Today, community with multiple locations in twelve By theYears Dor Yeshorim is an internationally acclaimed countries across the globe.
Dor Empty Screening Top 10 in Dor Yeshorim Familial An Launching Launching Commitment Yeshorim Tay Sachs Panel the Entire Receives Dysautonomia unbelievable the Optional the Sephardic to attaining Begins Ward Increased United States Accolades Discovered miracle! Panel Panel Excellence Rabbi Ekstein and First time ever Screening panel Rabbi Ekstein The NIH Familial Dysautonomia No more Tay Sachs Dor Yeshorim Dor Yeshorim The genetics field is his colleagues that Kingsbrook increased by and Dor Yeshorim (National gene was discovered and children born. An launches 2nd launches constantly evolving and founded Dor Hospital Tay Sachs 400%: Cystic are at the top 10 Institute of added to our panel. Rabbi unbelievable miracle! panel of diseases, specialized expanding as new and rare Yeshorim to prevent ward, of 16 beds Fibrosis, in the entire US! Health) praised Ekstein enlisted Dr. Berish “Through your aggressive commonly known as diseases are being discovered panel for those the occurrence of were empty of Canavan’s Rabbi Ekstein/Dor Dor Yeshorim Rubin to address and genetic testing program the optional panel. in both Ashkenazim and genetic diseases in patients, due to Disease, and Yeshorim received as “The only combat the high frequency to prevent this serious The comprehensive who stem from Sephardim. Dor Yeshorim our communities. Dor Yeshorim’s Fanconi Anemia the Robert successful of Familial Dysautonomia medical problem we have panel adds another Sephardic stays ahead by seeking After experiencing tireless efforts in were added to Wood Johnson genetic in the Jewish community— eliminated this disease.” level of protection descent. The out the most cutting-edge, his own personal preventing the the standard Community screening taking nearly one hundred families “Our last Tay Sachs patient for Jewish families panel checks efficient and accurate tragedy of losing occurrence of testing panel. Health Leadership place in the had reached out to Dor past away five years ago worldwide with rare for a variety technology available, 4 children to Tay Sachs from Award for their United States” Yeshorim for salvation. and there has been no or newly discovered regardless of cost. Our of diseases genetic disease within the Jewish outstanding [Accolades by Rabbi Ekstein even took admission since.” recessive genetic commitment to attaining and recognizing community. efforts in the both the acting out a mortgage on his diseases and prevalent top level equipment ensures — excerpt of letter by the unbearable world of genetics. Director of the home to fund the research. mutations. specifically in that we can minimize time Hau-Chin Chen, Director of suffering and National Institute In just three months of the Sephardic and maximize results when Pediatrics at Kingsbrook heartache of Jewish of Health (NIH) research and testing, the communities. searching for the answers Hospital, to Dor Yeshorim families throughout and the Director gene was discovered and to even the rarest genetic regarding the official closure the world. of the Human added to our panel. diseases threatening families. of the Tay Sachs ward. Genome Project.] 1983 1992 1995 1996 2001 2001 2008 2013 2015 2017
2018 Dor Yeshorim is primed for a year of unprecedented breakthroughs.
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He is bright and intelligent, even higher functioning than How has Dor Yeshorim helped What is the message you want Sephardim normal. In a way, this adds heartbreak and challenges; with your organization? across the world to hear? It happened Orel understands his situation. He also deals with Dor Yeshorim has become central in fighting AT. We Go get tested!! Please!! It could be critical in saving our loneliness, even in our warm community. Until 6th grade had two families from Yemenite descent with children children from tremendous pain and suffering. Know that he was mainstreamed in a regular classroom, in 7th grade with AT and we found that these children suffered from a there can be genetic diseases in your family that have not he moved to a school for physically handicapped children new mutation and no one had information about it. Dor yet been diagnosed. Don’t take any chances; get tested! in Tel Aviv. Now that he is an adult, whenever possible, Yeshorim collaborated with the Ministry of Health to he goes to the Elan day center for handicapped adults. conduct a study. In the end it was found to be a specific rare mutation. The cooperation in research is something What options existed at the time of Orel’s ToContinued from PageMe! 3 Dor Yeshorim does best and is a critical component in diagnosis for support, education and research? providing more knowledge about the disease and its I’ll never forget the day I received the news. It was 1995 None. Doctors knew very little about the disease; they prevention. and I was at Bar Ilan registering for a course. While I was basically told me he was just going to die. I ignored the In Israel, due to Dor Yeshorim’s new Sephardic testing waiting on line, I called the hospital for Orel’s test results. doctors and tried all kinds of alternative medicine. Then panel, the risks of babies being born with AT has lessened They told me that I should come straight to the hospital. Orel came down with chicken pox and became so sick he considerably. I want to see it obliterated, just like there When I arrived, there was a whole row of doctors waiting had to be hospitalized. are almost no chareidi children with Tay Sachs. Together for me. My heart fell. They told me the name of the with Dor Yeshorim we continue working to increase disease and its symptoms, and that Orel would probably awareness that both Sephardim and Ashkenazim alike not live past the age of 20. I went home and sunk into two I ask everyone to daven for must do genetic testing and check compatibility. I can’t years of depression. Orel Natan ben Orly Jaqueline help but think if only someone would have come to me in Can you tell us about the disease? my school when I was a teenager and encouraged me to be tested… Ataxia-telangiectasia, or AT, is a rare inherited disorder That was the changing point for me. I went to the that affects the nervous system, immune system, and medical library in Tel Hashomer and buried myself for How many families other body systems. It is neurologically based and begins days, researching and reading everything available. I benefit from your association? in early childhood. Early symptoms are difficulty with became an expert. In the course of my research I came At any given time, there are tens of families being balance and equilibrium which deteriorates over time, across other parents of AT children, including Mr. Leon treated, and taking advantage of the direct support and to the point where the person can’t walk, eat, dress, etc. Weissbaum. Together, we founded the Association for involvement of the association, until they are able to Difficulty coughing causes an increase in lung diseases Fighting AT Disease. It grew from a small effort into stand on their own feet and take control of their child’s and requires treatment similar to patients with Cystic clinics across the country. treatment. Fibrosis. AT also causes a suppressed immune system, thereby causing a lot of infections to become more How did your connection Are the numbers growing? complicated. There is an increased risk of malignancies. with Dor Yeshorim develop? Yes and no. The number of families we support grows as About ten years ago, several chareidi families approached It is important to clarify that Orel, like other children more is known about the disease and children who were the Association, concerned that there is no genetic with AT, is not affected cognitively. previously misdiagnosed are found to suffer from AT. testing for people of Sephardic descent. At the time, most The numbers of children born with AT are going down; Sephardi people thought that there are no Sephardic no doubt because of the growing awareness within the genetic diseases. I contacted Rabbi Ahron Eckstein, the Sefardic community regarding genetic testing. CEO of Dor Yeshorim in Israel and we had a series of meetings. Can you share how the association has helped The moment Rabbi Eckstein saw that there was an Orel? What is his current condition? opportunity to finally convince the Sephardic population Orel is treated at the clinic we started in Sheba Tel to test, he was ready to go. Dor Yeshorim invested Hashomer Medical. The organization also sends tremendous effort and expense to research and develop breathing therapists trained by Sheba’s pulmonary ward a Sephardic testing panel. As a result, the numbers of to provide home care twice a week. The disease has Sephardic participants in Dor Yeshorim has increased progressed. He has general neurological deterioration, significantly, but we can’t let up until everyone gets difficulty swallowing and eating, and he has a tumor tested, just like in the Ashkenazic communities. which continues to grow. I ask everyone to daven for אוראל נתן בן אורלי ז'קלין - Orel Natan ben Orly Jaqueline
10 DorYeshorim.org / 718.384.6060 1111 309 Rutledge Street Brooklyn, NY 11211 718-384-6060 [email protected]
It Almost HappenedThe boy’s side went to buy a bracelet andto we were gettingMe! ready y name is Mrs. C and my daughter is getting for a mazal tov, when Dor Yeshorim called me to say that they married in just three weeks. It is a time of so had recently introduced a new testing panel specifically for much joy, happiness and hope for the future, Sephardim. “It will take a few days but it is extremely important even as we work feverishly to get everything that both the boy and your daughter be tested for the diseases Mready on time. I want everyone to know how close we came to on the Sephardic panel.” a future that might well have been filled with tremendous pain We opted to go through with the extra testing. You can imagine and agmas nefesh. how long those few days were! I had to hold myself back from When my daughter’s mostly Ashkenazi classmates were being too excited, but in my mind, I was planning a vort. tested by Dor Yeshorim in 11th Grade, she took the standard Imagine our horror and pain when the phone rang and the Ashkenazi testing panel. Something just compelled me to do Dor Yeshorim representative told us that the results were not it. When we began the parshah of shidduchim, I had no idea compatible!! The shidduch was off. We were devastated, as was that a new Sephardic panel had been introduced. our daughter and the boy.
A short while before my daughter met her current chassan, Chasdei Hashem, as I prepare to walk my daughter down to a different match was suggested for her. The questions were the chuppah, this story is in the past (and the boy too has since asked and answered, the couple met and things were looking found his true bashert). But I share it with you today so that good. It turned out that the prospective chassan, a Sephardi, every Sephardi parent can know, genetic diseases do exist in our had also been tested for the standard panel, so we figured we community. Have your children tested, so the worst does not
might as well call Dor Yeshorim for a compatibility check. happen. It almost happened to me. & Communications Writing Shoshana Bernstein: / Writing: Design: BottomLineMG.com