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, May 1, 2013

Recidivism Isn't Always Bad

We read how some people just keep going back to jail, year after year, crime after crime.  That's bad.

Oh, that people would keep coming back to the fight against ALS year after year!

Annually there are ALS advocacy activities in Washington, DC, in May.  Every year the repeat faces are those of employees in the fight against ALS and board members who are vested in ALS organizations.

The faces of the people with ALS who manage a trip to Washington seldom repeat.  The disease itself makes them short-timers.

The faces of the caregivers and families who manage a trip to Washington also seldom repeat.  That's a concern.  After a person with ALS dies, those are exactly the people who can advocate relentlessly with a special kind of rage.  They have the benefit of longer memories and know where the fight has failed and needs change.

Why do we lose them?  Why do they leave the front lines of the fight?  Does it have something to do with their longer memories and rage and challenges to the status quo?

Perhaps the registration form holds a big clue.

"Other?"  Clearly not a core constituency.

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