One Mother’s Mission To Fight Rare Disease
Wed, 05/05/2010
Staff Writer
Gila Michael: Spurred by daughter’s rare hereditary muscle disorder.
Gila Michael: Spurred by daughter’s rare hereditary muscle disorder.

 Gila Michael used to sell real estate to celebrities and vent frustrations about her personal life on the pages of a yet-to-be published memoir, which she’s titled, “Lovesick in Beverly Hills.” Then one day four years ago, her life turned upside down. 

She learned that her younger daughter, Jennifer, whom she describes as athletic with long, beautiful legs, a girl who climbed Grand Teton while a student at Berkeley, had developed the early symptoms of HIBM, Hereditary Inclusion Body Myopathy. Jennifer, now 34, seemed suddenly clumsy, falling down often, unable to exercise on a treadmill.

To date, there is no cure for this hereditary muscle disorder that is quite rare, but occurs with great frequency in the Middle Eastern Jewish population. Although the disease doesn’t exhibit itself until the late teens or late 20s, the sickness tends to progress over a 15-year period, with many of its victims relying upon a wheelchair by the time they reach middle age.

Michael says she cried for eight months. Then one day, she found herself in Joan Rivers’ home in Malibu, where she had been hired to cook a Persian meal, and received some advice from the celebrity: “You’ve got to stop crying and start raising money to help your daughter.”

Michael sprung into action, founding Neuromuscular Disease Foundation, one of only a few organizations in the world devoted to finding a cure for HIBM. Michael applied her business acumen and networking skills, contacting doctors around the world, and educating the public through speaking engagements. She’s raised $2 million for the organization, and says that except for “2 to 3 percent, every dollar we have raised goes toward research.”

The list of supporters reads like a list of who’s who, including: Larry King, Paula Abdul, Joan Rivers, Kirk Kerkorian, Jack Scalia and Phoebe Price and Goldie Hawn.

“Nothing is tougher than your child being sick,” says Michael. “No one can pretend to put themselves in my shoes. Nobody knows what it’s like.”

 

 

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