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 22, 2014

We Need An Air-Quotes Dictionary For The Fight Against ALS

From the day a neurologist made air-quotes with his hands when he used the word promising to
describe experimental clinical trials for ALS, I knew we were in trouble.

Over many years we hear words over and over used to generate promise and hope and donations.  The words have become devalued.  They don't mean diddle without specifics.  They all need air-quotes.

We have to press for what they really mean.  Words are cheap.  We need substance.

Here are some that set off bells after you've been around the fight against ALS for a few years --
• Breakthrough
• Collaboration
• Consortium
• Exciting
• Game-changing
• Groundbreaking
• Hopeful
• Leading
• Partnership
• Promising
• Transformative

They make us all feel good. We need to press for details from those who use them.

As an ALS advocate once said, "If something is called 'exciting' in a press release, it probably isn't."

Or maybe there's a drinking game here...

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