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, March 23, 2013

It's Still Nuts

About a year ago after having received some chest-thumping appeals from multiple ALS organizations, I wrote this blog entry about how nuts it is that we are kept so uninformed about our ALS research investment portfolio.

A few days ago I listened to a  compelling segment on The Diane Rehm Show regarding choosing effective and efficient charities.

We need to be able to take a serious look at our ALS research investment portfolio, and that can't be done with the selected and selective bits and pieces of information that our ALS charities and our government agencies give us today.  Take a look at some examples --

ALSA
ALSRP
ALSTDI
MDA
PRIZE4LIFE
PROJECT ALS


The investors are left pretty much in the dark about the business basics -- who gets how much, start dates, end dates, and outcomes.  The investors simply aren't given essential information to make informed decisions about the investments they are constantly asked to fund.

Organizations, please don't fly off and slap together competing, duplicate tools to give us this information.  That would be neither effective nor efficient.  We need a single, common tool that every grantmaking ALS organization and government agency keeps current.  It simply needs to include things like we see today on your websites, but with dollars granted, start dates, end dates, and outcomes.  We also need more than active projects.  The history is extremely valuable.  It all needs to be searchable, shared, and accessible from your websites.

We need a common tool that tells your investors the common-sense basics.   You need to make the commitment to keep the content current.  Your investors are tired of being kept in the dark and fighting through scattered bits and pieces of information and your 990s.

One tool...  One way to show that ALS organizations are efficient and effective at spending ALS research dollars... One place to shine some light for your investors.

If you want us to believe that you can figure out a complicated disease like ALS, then you can surely solve this simple business problem for us.  It would be efficient and effective, and that's what we expect of you.


1 comment:

  1. Comments on research program successes around 9 minute mark. A good reason to have research portfolio information with investment numbers and value of results. http://www.moppenheim.tv/insight-jane-gilbert-president-ceo-als-association/

    ReplyDelete