This is the Forward’s coverage of Jewish culture where you’ll learn about the latest (and sometimes earliest) in Jewish art, music (including of course Bob Dylan and Leonard Cohen), film, theater, books as well as the secret Jewish history of…
Culture
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Discovering the Newest Jewish Genetic Disease
One day, about four years ago, a young couple came to Dr. Alan Shanske’s office looking for help. They had already been to numerous doctors, but none of them was able to diagnose their 4-year-old son. The boy, Shanske recalled, was developmentally delayed, uncoordinated with poor muscle tone, had experienced breathing problems as an infant…
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Sick Texas Sheep May Aid Tay-Sachs Fight
Fred and Joan Horak have been ranchers since 1985, so 11 years ago, when Joan noticed that two lambs from her flock had tilted heads and wobbly legs, she knew something was amiss. Little did the Horaks know that their discovery of these two sick lambs would end up providing new hope in the search…
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Intermarriage Spurs Tay-Sachs Advisory
Citing rising Jewish intermarriage rates, the leading organization devoted to combating Tay-Sachs is urging doctors to encourage the use of more comprehensive testing methodology to identify carriers of the deadly genetic disease. The National Tay-Sachs & Allied Diseases Association issued its position statement on Tay-Sachs carrier screening in September 2009. The statement stressed the importance…
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Improve FDA’s Rare Disease Review Process
The Jewish community has long been a leader in supporting medical research and education efforts, especially with regard to those diseases that disproportionately afflict people of Ashkenazi Jewish descent. Creating coalitions with other patient advocates in the rare disease community would give American Jews an opportunity to advance efforts to fight diseases that disproportionately affect…
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Enlisting Rabbis in the Push for Screening
“My wife and I were married by two rabbis, one Conservative and the other Reform, and neither of them gave us any information about Jewish genetic diseases.” So begins the story of Lawrence Sernovitz, himself now an associate rabbi at the Old York Road Temple-Beth Am in Abington, Pa. A little more than a year…
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Test, and Then Test Again, Experts Advise
With additional mutations for genetic diseases continuing to be discovered among Ashkenazi Jews, genetic screening advocates are urging people to get tested for newly identified diseases, even if they have already been tested for other diseases. Some people may assume that since our genetic make-up is fixed, a DNA test is something that needs to…
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Accessibility vs. Expertise: Direct-to-Consumer Testing Sparks Debate
Drugstores stock tests that gauge blood sugar levels, predict ovulation, ascertain pregnancy and determine whether illegal drugs are in the bloodstream. And back in May, the Walgreens pharmacy chain announced that it would offer testing kits of another kind: ones intended to detect genetic diseases. Within days of Walgreens’ announcement, however, the retailer tabled its…
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$1.5 Million for Atlanta Screening
A two-year pilot program that promotes genetic disease awareness and offers carrier screening will be introduced in Atlanta as a result of a $1.5 million grant from the Marcus Foundation, the philanthropy of Home Depot co-founder Bernard Marcus. The Victor Center for the Prevention of Jewish Genetic Diseases will manage the project, which will provide…
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Therapy Shows Promise in Trials for Hereditary Cancer Patients
An emerging therapy that attacks cancer cells continues to show promise, most recently in two international studies on women who have breast and ovarian cancer and are carriers of cancer-causing mutations particularly prevalent among Ashkenazi Jews. Two trials tested the experimental capsule olaparib on women whose breast or ovarian cancer had spread to other organs,…
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Rare Connector: Bringing Bloom’s Sufferers Together
For a long time, Sheryl Grossman felt like she was alone in the world. Growing up in Flossmoor, Ill., she didn’t understand why she was so small, and why she had to see so many doctors. At the age of 14, her parents told her that she had Bloom’s syndrome, a rare autosomal recessive genetic…
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Lawsuit Filed Over Familial Dysautonomia Genetic Patent
A lawsuit now working its way through federal court is adding an interesting twist to the heated debate over genetic patenting. Two scientists from Fordham University are suing Massachusetts General Hospital over a patent on the gene that causes the rare Ashkenazi recessive genetic disorder familial dysautonomia. The two sides are each aligned with groups…
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