ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, May 8, 2009

Just Cure It

This morning's WSJ has an interesting feature on the concept of "crowd sourcing" that seeks creative solutions from anyone and everyone by granting prizes. Websites such as http://www.innocentive.com/ have enabled the world's brains to swarm on scientific problems.

http://online.wsj.com/article/SB124173078482897809.html

"The Science Prize: Innovation or Stealth Advertising?
Rewards for Advancing Knowledge Have Blossomed Recently, but Some Say They Don't Help Solve Big Problems" by Robert Lee Hotz

...Call it crowd-sourcing; call it open innovation; call it behavioral economics and applied psychology; it's a prescription for progress that is transforming philanthropy. In fields from manned spaceflight to the genetics of aging, prizes may soon rival traditional research grants as a spur to innovation. "We see a renaissance in the use of prizes to solve problems," says Tony Goland, a partner at McKinsey & Co. which recently analyzed trends in prize philanthropy.

Critics, though, dismiss the newest trend in prize-giving as a form of advertising that masquerades as public service -- and a clever ploy to attract top research talent at a discount. ...

For private philanthropists, it's a way to use charitable giving to force a breakthrough. The Virgin Earth Challenge, for example, promises $25 million to the first among us who can cheaply remove a billion tons of greenhouse gases from the air every year. The Prize4Life contest offers up to $8.5 million for breakthroughs leading to a treatment for Amyotrophic Lateral Sclerosis (ALS).

In growing numbers, corporate sponsors are embracing the prize challenge as a safe, inexpensive way to farm out product research, at a time when tight credit and business cutbacks have slowed innovation. Venture-capital investments have dropped by almost half since last year, reaching the lowest level since 1997, the National Venture Capital Association recently reported. "Here is a mechanism for off-balance-sheet risk-taking," says Peter Diamandis, founder of the X Prize Foundation. "A corporation can put up a prize that is bold and audacious with very little downside. You only pay the winner. It is a fixed-price innovation."


This seems like an excellent opportunity to open up further discussion. Are organizations such as Prize4Life trying to get an ALS cure on the cheap?

ALS is a disease unlike others since it is not understood well. There is no existing therapy. The patient population dies so quickly that there are never enough patients around at any moment in time to get the profit-motive juices flowing in a society that relies on profit-motive juices to prime the pump.

Perhaps crowd-sourcing is our only practical hope for a disease unlike any other. Perhaps Prize4Life isn't trying to cure ALS on the cheap. Perhaps Prize4Life is simply trying to cure ALS.

Nothing else has worked.

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