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, April 24, 2016

There Is Stunning Loss In 78,000 Empty Chairs

The first time I attended the ALS Advocacy Conference and Day in Washington, DC, it was 2004.  The highlight to me was on the first day.  A women with ALS named Dee Chiplock grilled a presenter from the FDA with some pointed questions and comments.  It was uncomfortable for everyone but Dee.  I was hooked.  This is how we could make a difference with people who hold the ultimate bureaucratic power to make a difference.  It was like flexing our democracy muscles.

The first evening there was a candlelight vigil at the Jefferson Memorial.  There was no press.  There was nothing to let the nearby tourists know why these people had gathered.  We were pretty cloistered.  That seemed like a missed awareness opportunity to me.

At that time I thought how poignant it would have been to have 6,000 empty folding chairs in front of our crowd to represent the Americans lost to ALS in the past year.  Every empty chair would represent somebody's somebody -- a mother, a father, a sibling, a loved friend, a child, a grandparent,...

And the next year there could be 6,000 more including Dee Chiplock's.  And the next year 6,000 more.  In a few years the Mall would be so clogged up with empty chairs that people in Washington would have to pay attention.

There were always organizational excuses not to do anything to foster outside awareness in Washington.   One chapter actually went rogue and brought a stunning display to Washington for two years that garnered a lot of attention despite the objections of the conference organizers.

And a couple dealing with ALS arranged (completely on their own) a wreath-laying ceremony at Arlington one year to remember the veterans who have died from ALS.  That was taken over by conference organizers the next year.  They got the film in the can and dropped the ceremony after that.

Last year some people dealing with ALS who are pressing for FDA change arranged a rally in a public space outside the conference hotel.  Conference attendees were discouraged from attending.  In spite of that, there were some bold and bright Dee Chiplocks bravely flexing the muscles of democracy in lieu of their plated lunch in the hotel.

And so it goes.  The annual conference goals don't change much.  The official legislative requests are remarkably modest and similar year after year.  The faces change, but we don't get a sense of the cumulative loss that we experience from ALS year after year after year after year.

The conference hotel is fancier now and the conference content is much more scripted.  It's largely an infomercial for the achievements of past legislative priorities.  And the candlelight vigil is now being  replaced with an evening of hilarity with a comedy troupe.

This will be my 13th ALS Advocacy Day.  And there would have been 78.000 empty folding chairs on the National Mall by now.  Over 1,500 rows of 50 empty chairs.  And each of those empty chairs is somebody's somebody from the U.S. who has been lost to this stinking disease since 2004.

The emptiness of those chairs is painful.  The loss is stunning.  The loss is startling.  We need to stun and startle.  We need to flex more  democracy muscles in memory of Dee Chiplock and every somebody who has died from ALS.


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