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, November 2, 2013

Some Of The Most Powerful Ideas Are So Simple

Peanuts by Charles Schulz
November 2, 2013

Every family dealing with ALS today is hanging hopes on something.  Every organization funding ALS research is promoting its hopeful work.  All place their bets the best way they can today and believe and hope.

For decades ALS has outsmarted hopes and dreams.  ALS is a cunning enemy.  When things families and organizations hope for don't happen, people die and families and organizations move on.

Whoops!  What's to keep the next "generation" of people dealing with ALS from pinning their hopes on a concept that already failed?  What's to help people investing in organizations' hopes from placing some very bad bets?

It's difficult for people and organizations to admit that they have failed, especially when optimism drives fundraising success.  Everybody loves a winner.  

We need to be honest that we have all failed, both individually and collectively, to find an effective treatment for ALS.  It's that simple.

And to make some good come out of those failed hopes, let's start keeping some records of what didn't work.  Please!  Let's build on the information of the past rather than continuing to recycle hope. 

It's time for a good, searchable database of ALS research investments and outcomes.  We need to learn to admit when we were wrong and to build on that knowledge.  We need to expect some refreshing honesty and accountability from organizations, and we donors need to support organizations that are big enough to document what has failed.

Roy hit the nail on the head in this morning's newspaper. 

1 comment:

  1. Good records of the Cephalon Myotrophin fiasco would be revealing to ALS patients and advocates today. It's hard to get the whole story from picking up selective bits and pieces available online today.