Kam Redlawsk's Bizarre Disease, Ignored by Big Pharma, is Targeted by her Bicycling Pals and an Encino Lab
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Kam Redlawsk has become a global face for the terrible disease.
By Andra Lim
The odds never stood in Kam Redlawsk's favor.
Redlawsk, 34, is one in a million people affected by a genetic disorder that has wasted and weakened her muscles, to the point where she now uses a wheelchair.
And because the condition -- hereditary inclusion body myopathy -- is so rare, the chances that somebody will allocate research funds to developing a treatment can seem like a million to one. The government and Big Pharma have little incentive to produce drugs only a few in the world will use, only a few in the world will pay for.
What's there to do when cold, hard statistics and industrial cost-benefit analysis are stacked against you?
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