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.

Tuesday, October 18, 2016

Actions >> Words

Yesterday I was involved in an interesting twitter exchange on the difference between the words we hear in the fights against diseases and the actions actually delivered.

And an apt example had played out on twitter just a few minutes earlier yesterday.

We got word from an ALS not-for-profit that they are trying to gather 1000 voice samples quickly for a research project.  The voices both of people with ALS and of healthy volunteers are needed. I did my own recording and found the process to be very simple, fast, and unobtrusive.  This seemed like a good job for social media.  1000 recordings should be a piece of cake, especially since some organizations have a wonderful social-media reach.   I posted the link and some requests for people and organizations to retweet.

Not one ALS organization retweeted.  Not one.  Individuals did, but not one ALS organization.  No action.

Here is one of the words that bothers me when I see this kind of pointless apathy and inaction -- "collaboration."  The use of that word has been pretty constant since the windfall of the ice of 2014.  There have been tens of thousands of dollars spent on talking about "collaboration."  Meetings and talk and hollow words don't solve problems.  Simple actions do.


When it came to actually doing something simple yesterday to fill one organizations's ALS study with quick voice samples, "collaborate" was just a word.  It didn't generate any action.  It meant nothing.

Talk's cheap.  Show us what you do.

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