In some families, breast and ovarian cancers take an inordinately fierce toll, striking one generation after another, menacing mothers, daughters, sisters and cousins. And for the women in these families, wondering if and when cancer might strike becomes a daily burden.
Soroya Nazarian learned about hereditary inclusion body myopathy (HIBM), an uncommon muscular disorder that affects the Persian Jewish community, while in Israel on a Hadassah mission about five years ago. There, she met professor Zohar Argov, from the department of neurology at the Hebrew University-Hadassah Medical School in Jerusalem, the researcher who first discovered the rare disease in 1984. Although Nazarian did not know anyone personally affected with HIBM, the self-described \”professional volunteer\” knew her involvement with Hadassah Southern California put her in a unique position to increase awareness and raise funds for the condition that seemed to unfairly target her community.
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