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.

Wednesday, August 8, 2012

It's Nuts

Imagine going to a stock broker who gives you two kinds of reports --
  1. An occasional list of the things you bought (without prices)
  2. An occasional report on one of your investments that did well

That's it.  You don't get dollar amounts on your individual investments.  You don't get a list of the investments that went bust.  You don't get information in a format that makes it easy to track individual investments over time.

Nobody would use that broker, right?  You would have to be nuts.

Much of ALS research is funded by donors and taxpayers.  We are the investors in a portfolio, yet we have information scattered here and there without a good, businesslike trail of projects, grantees, start dates, end dates, and outcomes.  We get occasional feel-good lists of what we bought.  We get occasional feel-good reports on research projects that did well. That's it.

As investors, it's time that we got better information about our portfolio.  It's time for organizations and our government to supply us data in a format that permits us to see the who, what, where, when, how, how much, and outcome.  We need information in a format that lets us look back before we invest again.

It's nuts to be such blind investors when surely grantmaking organizations hold the data that the investors deserve to see.  It's just nuts.

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