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.

Thursday, September 4, 2014

This Is Not A Wish List

Yesterday a man with ALS asked some important questions.  We have so much to do.
"What topics are most urgent!? What needs to be discussed?"
Today's blog has my two-item response, but first, I had to find the right picture.  I didn't want a picture of a wish list.  These are not wispy dreams.  These are important. They can and must be delivered.  I rejected pictures of to-do lists. Those make us feel good when we cross off the trivial and recycle the important things.

This is a must-do list.

1.  The Medicare CMS handling of Speech Generating Devices is urgent and must be fixed immediately.   Current policies and execution hurt people with ALS and the American taxpayer.  We must fix this.  Now. It should never have been recycled on to-do lists for the last year.  It belongs at the top of a must-do list. Today.

2.  Now more than ever we need a good accounting of all ALS research grants made by our grantmaking organizations.  Nowhere is there a good, searchable list for donors (or for taxpayers or for scientists, for that matter) to see grant dates, amounts, subject matter, recipients, and outcomes.  We don't need cherry-picked project announcements and accounting by press release.  We need an orderly portfolio of the buckets of investments and outcomes. Yes, now.

That's it.

That's a two-item must-do list.

No wishing.  No putting things off.  No prioritizing until we get nothing done.

We must do these two things.  Now.

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