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.

Saturday, August 23, 2014

Information -- It's What's Sustainable

Last night we heard an interesting interview by Judy Woodruff on the PBS Newshour about the #ALSIceBucketChallenge and the use of the windfall of donations --

http://www.pbs.org/newshour/bb/will-als-ice-bucket-challenge-money-spent/
"... whatever we do in research, care services, and even advocacy has to be sustainable, has to be sustainable."  Barbara Newhouse, President and CEO, ALS Association
Often not-for-profits think of sustainability as the fuel that feeds next year's revenue machine.

Medical research is expensive.  Medical research in neurosciences is mega-expensive.  There are many experiments that go plop.  We know that all too well from years of "promising" experiments and trials for ALS treatments that have proven to be duds.  ALS research is costly, risky business.

So how can you possibly look upon some big, immediate investments in this kind of research as being sustainable?  They could follow the trail of decades of failures.  They could be risky money pits, and not-for-profits often aren't good at risky anything.

It's all in the information that we retain and make accessible, both to scientists and to next year's donors.   It's going to take a lot of smart investments to beat the cunning ALS beast, and we know that many more battles will be lost before the war is won.  We need to document every investment and every outcome. We need to open up results.  That's how you sustain both the research environment and attract new, smart investments.  That's how you avoid reinventing wheels and duplicating efforts among organizations.

A simple start would be to have a transparent, organized, searchable, complete portfolio of research project investments and amounts and outcomes.  Today we get research grant announcements via press release and occasional reports of "promising" results via a few more press releases.  It's impossible to leverage the information when we just can't get to it.

We can build on what we learn from failures.  We must.  We can get better from the information that every research investment leaves behind.  If only we would treat the information as the precious sustainable resource that it is.



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