Last year I had the special opportunity to attend a gala event for the Advancement of Research for Myopathies (ARM), a non-profit based in Encino. The organization’s Iranian Jewish doctors, Daniel and Babak Darvish, have been at the forefront of seeking a cure for “Hereditary Inclusion Body Myopathy” (HIBM), a progressive and debilitating genetic muscle disease. HIBM typically plagues Jews of Middle Eastern ancestry, including some Iranian Jews. Fortunately testing to determine if a person is a carrier of the HIBM gene or disease is available. Our blog’s webcast recently sat down with both doctors to catch up with their organization’s efforts in the Iranian Jewish community to find a cure for HIBM:
The Darvishes, in my opinion are courageous because even though they have been plagued with this genetic disorder, they have taken on the enormous task of finding a cure for HIBM and also removing the stigma the Iranian Jewish community has long attached to people with this disorder. Sadly, some mothers in the community argued that even though one of their children may have HIBM, their other children who do not have the disorder will not be able to marry a person in the Iranian Jewish community because of the fear many Iranian Jews have of passing on the genetic disease.
(Dr. Daniel Darvish and his family).
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(left to right; Darvish doctors’ mother Shuku and her grandson Niels).
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