Parkinson's Disease Tulip


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Old 09-02-2008, 11:31 AM #1
paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
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paula_w paula_w is offline
In Remembrance
 
Join Date: Aug 2006
Location: Florida
Posts: 3,904
15 yr Member
Default Doing it themselves

Patient Power
Matthew Herper 08.21.08, 6:00 PM ET
Forbes Magazine dated September 15, 2008
If you are told you have an incurable disease, you might be motivated to help find a cure.

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.

The CF Foundation was the first patient charity to do something radical: pay for drugs to be invented and tested in people. It funded the first clinical trials of an aerosolized antibiotic Schaller has been breathing in for a decade. It has been testing a saltwater mist that Schaller says is "the best thing ever" for clearing out her lungs. Last year she was in a study of a promising experimental drug the CF Foundation paid to invent. Approval of another CF Foundation-backed drug, from Gilead Sciences (nasdaq: GILD - news - people ), is expected any day. Over the past 20 years the CFF has put $188 million into research at drug companies, and it is currently involved in human studies of 33 drugs.

article
http://www.forbes.com/forbes/2008/0915/070.html

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