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.

Sunday, July 10, 2016

I Dream

Sometimes when I want to write about something, I look through stock photos for the perfect picture for the blog.  Today I searched "dream" images.  There were hundreds about dreaming big, about reaching for the stars, about "if you can dream it, you can do it."

My dream is incredibly small.  It's not reaching for the stars.  It's about simple business 101.  It's about good project management.  It's what millions of workers do every day. It shouldn't even be a dream. It should be reality.  It's about a responsible, productive annual project oversight meeting.

There is no image for a dream this small.

I simply dream that --
  • Every person invited to this year's annual meeting for the CDC's ALS registry on August 3-4 will have read the meeting reports from the past decade's meetings in chronological order.  The annual meeting does not need to spend hours in basic orientation every year for those appointed to be the project's Advisory Committee.  Historically the meetings ramble and have led us to disappointing results despite all the back-patting.  This is serious business.  Be prepared.
  • Every person at the annual meeting will clearly state who invited him or her and what business relationships he or she has with other advisory meeting participants.
  • The CDC will present a detailed report of annual project expenses for the past three years and the budget status for the current year.  The cumulative expense also needs to be made public to the advisors.  Details, please (not broad category pie charts).
  • Project contractors will come prepared with meaningful metrics.  Good advisors make people sweat to present meaningful project metrics and not fluff at status meetings. Numbers of emails sent mean nothing.  Measure results.  I dream of sweat. 
  • Participants will speak candidly about registry completeness and design flaws.  Advisors will ask lots of questions and not let them go unanswered.
  • Advisors will challenge the status quo.  They will not be enablers.  Advisors make the same demands of this project that they would in their everyday business dealings.
  • All American citizens will be able to watch a new kind of oversight unfold live.
So I dream.  This should not be a dream.  This is business 101.  This is basic good governance.




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