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, June 22, 2013

Let's Have A Pact

Here is a press release from yesterday --

The ALS Association is working to change that and has committed more than $67 million to find effective treatments and a cure. 
Wow, is that $67 million last year or over the last 30 years?  Does "committed" mean your direct expenditures?  That's a huge chunk of money.

Here's a past statement from the MDA --
MDA ( is the world’s leading nongovernmental provider of ALS services and funder of ALS research. Over the years, MDA has led the fight against ALS, investing more than $307 million in its ALS research, services and information programs.
Double-wow, is that $307 million over the last 70 years or the last 7 years?  How much scientific research is buried in that number.

And this is from, the website of ALSTDI, a smaller, all-research organization --
12 M spent on research a year
That's a good wow because that is totally research and an annual number.  But how much of that came from the MDA?  Are we double-counting dollars?

One's impression is that ALS research is tremendously well funded.  The fact is that it's not.  Our ALS organizations, in an attempt to impress potential donors with their commitments, give the world a distorted view of the low research funding levels that have held back the fight against ALS.

So, how about a pact, ALS organizations?  It would be good for all.  Really.

Here's the pact:

Every year use a common format and share with the world --

  • The dollars you spent directly on ALS research in the last calendar year.
  • Any dollars that you received from other ALS 501c3s that were also counted in their statements.

That's it.  Simple.  No glitz. No spin. It gives your donors and the world a normalized view of the good research work you do and the tremendous need for more resources in the fight.  Please enter a pact.  We need a strong handshake and no arm-wrestling.  C'mon.  You can do this.

1 comment:

  1. Who is giving anyone the impression that ALS research is well funded? We're all too poor in this community to really give the money that's needed.