Some of the country’s top medical researchers were honored at a gala event on March 16th held at the Los Angeles Airport Marriott, for their work by the Advancement of Research for Myopathies (ARM), a non-profit based in Encino. Close to 600 guests from various countries and backgrounds also gathered to help raise funds for additional research on 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 you are a carrier of the HIBM gene or disease is available.
One of the organization’s founders, Dr. Babak Darvish said ARM over the years has battled to remove the stigma the Iranian Jewish community has had in publicly acknowledging family members with HIBM. “My brother and I are both physicians, we were both effected by this disease—so we felt we had to take action and we first established ARM in 1997 in our living room,” said Darvish. Darvish said he had completed medical school and wanted to become a surgeon when he first felt the symptoms of HIBM. At that time, the two brothers decided to literally take on the disease, both as far as research and fundraising. I met both the Darvish brothers and discovered that they had helped diagnois this disease that had previously never been properly identified. I was struck by their strength of will, desire to fight this horrible illness and their passion to change the negative views some Iranian Jews have of openly discussing the disabilities of their family members. I can say for certain that it toke real courage for these brothers to outreach for help to in their community where many feel a sense of shame and fear in admitting their family member has any disease, let alone HIBM. Some mothers argue that their children 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. It is a sad reality, but no doubt with the Darvish brothers creating ARM and going public with the realities of HIBM, they have been able to gradually remove the walls of ignorance in the Iranian Jewish community over the years.
While the defective gene for HIBM has been located, an effective treatment for the disease has not been created, said Darvish. Even though HIBM primarily effects Middle Eastern Jews, some individuals of Asian and Caucasian ancestry also inherit the disease from their parents. For more information on ARM, visit their website here.