Saturday, December 25, 2010

Tragedy turns parents into successful activists

Epilepsy takes as many as 50,000 lives each year - grim statistics Mike and Mariann Stanton hadn't heard of until their 4-year-old son, Danny, became one of them.

Somehow, that horrible tragedy a year ago transformed a blissfully ordinary Chicago family into extraordinary activists. With zero experience but fueled by wrenching grief, their passionate advocacy has brought widespread attention to a rare, little-understood medical condition called Sudden Unexplained Death in Epilepsy, or SUDEP.

The Stantons want other families to know what they'd never been told - that epileptic seizures can be deadly.

They've put up billboards, created more than 8,000 informational SUDEP brochures for doctors' offices, hospitals and families; held fundraising events to boost awareness and research dollars; and created a foundation that has garnered more than 10,000 Facebook followers. But their biggest coup is getting researchers at three major medical institutions in Chicago to launch the first-ever rigorous study of a monitoring device for detecting dangerous seizures during sleep, ideally before they turn deadly.

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