Scanning her inbox last fall, Becky Benson happened upon an unusual request from a pregnant friend, Emily Rapp: Would she mind if Rapp gave the baby a middle name to honor Benson’s younger daughter, Elliott? If the proposition sounded weird to her, the email went on, she should just feel free to forget it. “I…
Growing up in a Modern Orthodox family in Miami Beach in the 1960s was like being raised in a Technicolor Anatevka. Shabbats and Jewish holidays dictated the rhythm of life for the community. I spent endless hours in synagogues davening or pretending to, and half of each school day focused on Jewish studies. Firsthand accounts…
It was just a fever and a sore throat that first caught my father by surprise one morning in the early 2000s. But then the fever persisted on and off for weeks. After a while, he could barely climb a staircase due to his exhaustion. It took seeing five doctors — two internists, an allergy…
Sitting next to her husband in their Palm City, Florida, living room, Oralea Marquardt describes the last few moments of her 8-year-old son William’s life. Displayed prominently behind the Marquardts are photographs of William, who died in February from GM1 — a genetic disorder that causes a progressive loss of cognitive and motor functions. “He…
When a friend pulled Harvey Singer in for a bear hug one weekend in Chicago in 2008, a shooting pain went through Singer’s chest. A couple weeks earlier, Singer had noticed a change on the side of his left nipple but had shrugged it off as the result of being “old and a little out…
Myriad Genetics may have lost its singular hold on the market for BRCA1 and BRCA2 testing in May 2013 when the Supreme Court ruled against the patenting of genes, but few outside the science and medical communities are aware that Myriad continues to possess a repository of patient data from BRCA testing that it does…
It began as just a limp — and then it puzzled doctors for seven years. Back in 2003, Hollywood was Robert Zuckerman’s stomping ground. The acclaimed photographer, then 48, was at the peak of his career, preparing to shoot the promotional materials for the Disney blockbuster “National Treasure” starring Nicolas Cage and Harvey Keitel. He…
On a recent July afternoon, a group of residents at the Hebrew Home of Riverdale, New York congregated on a shady terrace. They were sitting in a semicircle facing Deborah Michaels, the instructor leading the yoga class. “Okay now we’re going to lift our hands up,” Michaels said. The participants raised their arms, some more…
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