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.

Wednesday, January 16, 2013

We Should Have The Mother Of All Pyramids Here

@team_gleason just tweeted, "Previous generations of pALS quietly faded into the shadows. This generation are not fading, quietly or otherwise. -SG  "
Every year in the United States alone there are around 6000 people diagnosed with ALS.  Suppose each has three loved ones.  Suppose each of those three carries on the fight against ALS after their beloved dies from ALS.  6000 Americans diagnosed per year * 3 loved ones * 73 years since Lou Gehrig's diagnosis = 1,314,000 potential Americans with ALS rage since the days of Lou Gehrig.

The United States only has 4.5% of the world's population.  We could have around 30 million people raising Cain about ALS globally.  Think of the attention they could get.

So where are all of these people who have been left in the wake of ALS?

A few need to "move on" after the difficulties of dealing with ALS.

Many more would be willing to stay involved in the fight if there were welcoming opportunities that fit their situations.  If not, they move on, too. 

Some become vested in ALS organizations and continue their work there.  That is valuable, but their focus often is on keeping organizations afloat rather than raising ALS awareness or rocking any boats.

In the last decade we have seen walks become major ways of drawing loved ones into the fundraising fight against ALS.  That has been impressive multi-level-marketing scheme; however, the retention of loved ones at walks after their people with ALS die is poor. Why?  As one once said, when the person with ALS is alive, others want to help, and fundraising is an easy way for them to do that.  That changes after the funeral.  Some walks aren't particularly welcoming to those left behind by ALS who may not be in a fundraising frame of mind, and that's unfortunate.

There are so many ways that have lost the powerful pyramid.  We need to embrace those who want to keep up the fight.  We need to recruit more voices of people who have lived the ALS nightmare.  They need to be welcomed to use their brains and offer their opinions.  We need our 30 million advocates and they need to know that it's time to make some waves.  We must not forget the staggering cumulative loss.

Thanks, @team_gleason for all you are doing to let our country and the world know of the outrageousness of ALS. Steve Gleason, you are an ALS rock star.  There are a few of us sticking around who have lost loved ones who would like to help you raise the noise level.  I was fortunate that Mom gave me some marching orders to get the word out about ALS.  Sixteen years later I won't let her or other PALS fade into shadows.

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