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A Friend in Needby Patti Dickey | magazine | July 10, 2012
At 2 years old, Ian Yagoda (now 7), was diagnosed with an inoperable Type 2 Astrocytoma tumor in his brainstem. “As a dad, you never feel as helpless as you do at that moment,” says Phil Yagoda. “I’m trying to be confident for my wife, Cheryl, and inside I’m freaking out.” The couple took Ian all over the country, only to discover that there really wasn’t much research being conducted for pediatric brain tumors.
Hence, Ian’s Friends Foundation (IFF), a nonprofit dedicated to finding both a cure and innovative ways to deliver necessary treatments. Pediatric cancer is the second leading cause of childhood death, next to only accidental death. “The number one cancer killing kids is brain tumors,” says Yagoda, “and there was an astounding lack of public research funds targeted at pediatric cancer.”
Yagoda, a managing director at Deutsche Bank, looked at traditional foundations and decided that IFF would operate differently—all monies gathered are used to fund research at institutions across the country at zero indirect cost. “When we give a dollar to a university or hospital, a dollar goes to that lab. We look at it more from the business standpoint—we negotiate every cent, refuse to cover indirect costs, and we don’t just give the lab their next check—we ask for accounting along with multiple updates.” IFF’s approach directs accountability and engages the researcher in a novel way. “It’s like a maze,” he explains, “start at the end and work your way back.”
How are they doing? In 2010, the National Institutes of Health awarded a $1 million grant to an IFF-funded lab at Georgia Tech. Weill Cornell Medical College is now conducting trials using conventional enhanced delivery—a targeted delivery of drugs directly to the tumor, bypassing the effects chemotherapy has on a child’s developing organs via traditional delivery methods. In Atlanta, Georgia Tech, Emory University and Children’s Healthcare are working on a three-part project to pinpoint a tumor for accurate surgical removal and banding the tumor to limit its growth. Researchers at Children’s L.A. discovered that when certain chemicals in the tumor start to elevate, the tumor becomes more aggressive. Just a few conclusions from IFF’s success.
“The Atlanta community has been incredible at getting behind this disease. Ian’s Friends are all the little kids that are going to be helped by what we’re doing.” He leans forward. “To quote a friend: It takes a village to raise a child, but a community to save one. I’m convinced that one day we’ll find a cure and keep these kids alive.”