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Patient groups new power brokers in drug development
Forbes.com
NEW YORK, NY—Every crash and thump of Emily Schaller’s drumsticks is a medical victory. The 26-year-old rock ‘n’ roller suffers from cystic fibrosis, which fills her lungs with bacteria-infested mucus. If she had been born 30 years earlier, she probably would have died before she finished high school. Instead, she’s “playing my guts out,” she says, hammering out licks she learned from listening to Mötley Crüe and AC/DC. Her all-woman band, Hellen, has played at almost every club in Detroit since she and four friends taught themselves to play five years ago.
Schaller keeps up a grueling daily regimen. She runs 25 miles a week, spends hours doing physical therapy and swallows 40 pills a day. But she gives much of the credit for her active life not to her diligence but to a 53-year-old patient advocacy group, the Cystic Fibrosis Foundation. “They’re the reason I’m alive,” she says.
