Ashkenazi Program Brochure
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בס"ד The key to healthy generations is in your hands The Dor Yeshorim pre-marital screening program, B’ezras Hashem, delivers the most successful, halachically guided application of genetic sciences and preventative medicine to date — anywhere in the world. What makes Dor Yeshorim Unique? What makes Dor Yeshorim Dor Yeshorim is run in accordance with the guidance and direction of or Yeshorim began halachic authorities and prominent over thirty years rabbanim across the spectrum as well as ago as a grass roots organization, a preeminent board of medical experts. seeking to, and eventually succeeding, Dor Yeshorim’s interactions, Din eradicating Tay-sachs. Today, procedures and communications are all Dor Yeshorim is an internationally strictly confidential; we do not reveal acclaimed pre-marital genetic screening the carrier status of an individual. This About Dor Yeshorim About organization, standing at the forefront cornerstone of the organization serves of genetic research and prevention. to ensure the privacy of every individual Headquartered in New York and and avoids any potential stigma related Jerusalem, Dor Yeshorim serves the to testing outcomes. Jewish community in eleven countries Our unique coded numbering system across the globe. provides peace of mind and further protects the privacy and dignity of Our mission: participants and their families. This • Provide confidential premarital system remains the only proven way to screening worldwide, to boys and safeguard our communities. girls of marriageable age and prevent the devastation of genetic disease. In addition, Dor Yeshorim offers assistance and specialized • Support families with children screenings for families affected by rare genetic disease affected by rare, through ongoing guidance and previously unknown assistance. genetic disease. Our • Conduct ongoing, cutting-edge non-stop research research on genetic diseases currently underscores our afflicting Jewish families with the mission to do goal of providing testing capabilities everything possible to and preventing the recurrence of the protect future Jewish disease. generations. 2 • About Dor Yeshorim What makes Dor Yeshorim Unique? • 3 Compatibility checks are fast, unlimited and free of charge. If neither or only one party is a carrier for or Yeshorim a recessive disease, the match is safe and a conducts mass Dor Yeshorim representative will call screening drives at high schools, both parties to inform them that they can yeshivas, seminaries and colleges proceed, risk free in regard to the tested Dworldwide. This makes screening access genetic diseases. easy for boys and girls approaching However, if both are found to be carriers shidduch age and helps avoid the of the same disease they are informed that How Does It Work? anxiety and expense of last minute the match is incompatible, advised of the testing when a potential match arises. risks of proceeding and offered genetic Dor Yeshorim also has representatives counseling. in cities around the globe who conduct individual testing. Dor Yeshorim is a non-profit organization. Blood samples are drawn and The testing fee is significantly subsidized each participant receives an thanks to generous donations from identification card and number. world-wide benefactors who support The samples are sent to CLIA certified our mission for healthy generations. and New York state (and EU) licensed laboratories where they undergo rigorous DNA testing. Results are entered into a highly regulated, central database under stringent quality controls. School and mass screening results are ready in 3 to 4 months; individual screenings in 2 to 3 weeks. When a match is considered, both sides exchange ID numbers and day/month of birth and call Dor Yeshorim’s easy-access, 24-hour automated hotline. 4 • How Does it Work? How Does it Work? • 5 Testing Panels Testing panels The heartbreaking agony of families enes, made up of twisted afflicted by genetic disease was the strands of DNA, are the driving force for Dor Yeshorim to create a blueprint for life; they tell our comprehensive testing panel and eradicate cells what to do and when to do it. their occurrence. At the same time, GDNA is constantly subject to changes, we take the responsibility of negating a referred to as mutations. The mutations match extremely seriously and conduct we hear about most often are usually the a painstaking evaluation before offering ones that cause disease. a test to the public. A person who carries a mutated gene The diseases we test for have all been proven for a specific recessive disease is called a to be incurable, life threatening and/or carrier. Carriers are healthy! Children debilitating. Dor Yeshorim currently screens Understanding Genetics of carrier parents for the same disease for the following diseases based on an have: A 25% chance of inheriting individual’s ethnicity. two altered genes and developing the disease. Dor Yeshorim tests for recessive Mixed Origin: genetic diseases; diseases that require Individuals of mixed origin will be screened both the mother and father to pass along for both the Ashkenazi and Sephardi panels the same mutated gene in order for the at no additional cost. (If mixed origin was disease to occur. specified at the time of screening.) Ashkenazi Panel: The diseases currently on the Ashkenazi panel primarily afflict individuals from the Ashkenazi community. 1. Bloom Syndrome 2. Canavan Disease 3. Cystic Fibrosis 4. Familial Dysautonomia 5. Fanconi Anemia Type C 6. Glycogen Storage Disease 7. Mucolipidosis Type I 8. Niemann Pick Type A & B 9. Tay Sachs 6 • Understanding Genetics Testing Panels • 7 Optional Ashkenazi Panel Specialized Testing Dor Yeshorim now offers an optional When a family unfortunately has a history testing panel for additional Ashkenazi of genetic disease, Dor Yeshorim has the diseases. They are not included as part ability to screen for additional genetic diseases of the standard panel being that the rate not included in the regular panels, including of their occurrence is slightly less – they instances such as deafness, blindness, and have been more recently discovered than neurological and metabolic disorders etc. the diseases on the standard panel. Testing Panels Once a family contacts Dor Yeshorim, The optional panel can be requested we provide ongoing and compassionate at the time of enrollment or by calling guidance and support to help them navigate Dor Yeshorim at 718-384-6060. (A new the disease and its implications. Dor Yeshorim blood specimen is usually not required). conducts extensive familial research to develop testing and prevent these diseases in 1. Bardet-Biedl Syndrome Type 2 future generations. 2. Dihydrolpoamide Dehydrogenase For a family with genetic disease, Deficiency Dor Yeshorim becomes a pivotal tool through 3. Jouberts Syndrome which to ensure healthy children in the future. 4. Maple Syrup Urine Disease Type 1B Did you know? 5. Nemaline Myopathy Dor Yeshorim’s testing protocols and eventual 6. Usher Syndrome Type 1 eradication of Tay-Sachs from within the 7. Walker-Warburg Syndrome Jewish community was so impactful, that the Tay-Sachs ward of Kingsbrook Hospital in N.Y., one of the largest in the world, was forced to close down due to lack of patients, B”H! 8 • Testing Panels Testing Panels • 9 Sephardic Panel 1. Achromatopsia (ACM) (CNGA3) In response to the growing occurrences 2. Achromatopsia-Total Colour-Blindness of genetic diseases within the Sephardic (CNGB3) community and the subsequent requests 3. Ataxia Telangiectasia (AT) for assistance, Dor Yeshorim recently unveiled a new testing panel that screens 4. Congenital Adrenal Hyperplasia for genetic diseases prevalent in Sephardic (CYP11B1) / non-Ashkenazic communities. 5. Costeff Testing Panels This panel represents many years of 6. Cystic Fibrosis (CF) painstaking research and development, 7. Cystinosis (CTNS) necessary to establish reliable testing that 8. Developmental Encephalopathy meets Dor Yeshorim rigorous standards. 9. Fanconi Anemia Type A (FA) Be aware: 10. Inclusion Body Myopathy Sephardim and Ashkenazim alike should 11. Infantile Cerebral and Cerebellar be screened and checked for compatibility Atrophy (ICCA) regardless of their partner’s ancestry, as there are some diseases that are shared by 12. Leigh Syndrome 1 both such as Cystic Fibrosis. 13. Megalencephalic Leukoencephalopathy (MLC) 14. Metachromatic Leukodystrophy (MLD) The heartbreaking agony of families afflicted by genetic disease was the 15. Mitochondrial Neurogastrointestinal driving force for Dor Yeshorim to create Encephalopathy (MNGIE) a comprehensive testing panel and will 16. Methylenetetrahydrofolate Reductase bez”h eradicate their occurrence. (MTHFR) 17. Polyglandular Deficiency Syndrome (PDS) 18. Pontocerebellar Hypoplasia, Type 2E 19. Progressive Cerebello-Cerebral Atrophy (PCCA) 20. Roborts Syndrome 21. Tay-Sachs (TS) 22. Usher Syndrome Type 2 (USH2) 10 • Testing Panels Testing Panels • 11 The Dor Yeshorim Team with each family to identify their specific Guidance and Support Dor Yeshorim provides guidance and genetic mutation and invest in case spe- support to families concerned with or cific research and assessment. We then affected by genetic disease. Whether use the information gathered to develop it is in the form of medical referrals, reliable, individualized testing meth- genetic education, financial assistance ods. This vital step provides the means or answers to questions regarding for healthy children within the family to shidduchim. Dor Yeshorim is a vital