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In 2010, Dr. Gidon Akler, a fellow in the genetics and genomic sciences department at Mount Sinai and a colleague of Kornreich, co-founded the Sephardic Health Organization for Referral and Education with Bob Kamali, a prominent member of the New York-based Persian Jewish community who lost his 6-month-old granddaughter to Wolman disease. Their goal was to create a website that would disseminate information about genetic conditions associated with subgroups of Jews from the Middle East.
One of Akler’s first goals for SHORE was to coordinate with the Jewish Genetic Diseases Consortium, the alliance of not-for-profit organizations at the forefront of raising awareness about genetic disease in the Ashkenazi community. In 2010, Akler, a JGDC board member, consulted with Randy Yudenfriend Glaser, chair of the board, to have 17 “Sephardic/Mizrahi Jewish Genetic Diseases” added to the list of 20 “Ashkenazi Jewish Diseases.”
But even with this nominal change, Yudenfriend Glaser noted that providing the same sort of education and outreach offered in the Ashkenazi community has been a challenge.
“It has been very difficult to integrate into the Sephardic community even with people helping us,” she said.
In L.A., Quindipan described a similar barrier. “There is an immense [stigma] to being found that you’re a carrier of a genetic condition because there’s a fear that it can affect the marriage prospects of people from that family,” she said.
Cedars-Sinai has been coordinating with local rabbis, community centers and grassroots organizations like the Neuromuscular Disease Foundation, founded by Jennifer’s mother, and Advancement for Research Myopathies — founded by Drs. Daniel and Babak Darvish, two brothers diagnosed with HIBM — to help get the word out, but progress has been slow.
“People will say they have [multiple sclerosis], they’ve had a car accident, all kinds of stories — anything to cover up the fact that this is something genetic,” explained Carolyn Yashari Becher, Jennifer’s sister, who took over as executive director of NDF after their mother retired. “People want to get their children married before anybody finds out. One of the ways we’re trying to push this is through the rabbinic community and say you cannot marry people without encouraging them to get tested.”
In Israel, intermarriage between Sephardic and Ashkenazi Jews, and widespread awareness campaigns, have made headway into traditionally insular communities to promote the importance of genetic testing.
“Somehow Ashkenazi Jews took their diseases as a normal thing for their community. I suppose there was stigma but with time people got used to the idea,” explained Dr. Ohad Birk, head of the Center for Human Genetics Research at the National Institute for Biotechnology in Israel. “I’ve been a physician in Israel for 30 years and I’ve not seen a single case of Tay-Sachs. The reason is that the prevention system works. And that’s the true answer: not to hide from these problems, rather tackle them and prevent them.”
Yashari Becher stressed that the negative associations are slowly fading as people like Jennifer come forward.
“My sister was one of the first people ever to get up and speak publicly about having this disease,” she said. “Through that, she has really broken down a lot of the stigma because what she has done is put a face to this disease and really brought it home for people. What we have done is really pushed the statistics and said ‘Look these people are in our communities, they are in our families, we cannot ignore this any longer.’”
Contact Anne Cohen at firstname.lastname@example.org