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.

Friday, January 20, 2017

It Was Twenty Years Ago Today

Twenty years ago this morning we lost Mom to ALS.

She died from ALS.  She did not succumb to it.

In 1997 it was outrageous that people were still dying without any effective treatment, so long after Lou Gehrig's death.

In 2017 it's even more outrageous.  Over 2,500,000 people have died from ALS since Mom.

Not much has changed in two decades.  We raise funds and walk and support research, but the prognosis for a person today is mostly the same that Mom faced and that Lou faced.

Step back and look.  We have failed.  Individually and collectively we have failed.  Do we ever admit that?

A few days ago there was an ALS Association "Listening Tour" conference call.  I appreciate the opportunity to be heard.  Today I continue to be concerned with a large, influential organization not being able to be introspective and candid about problems and failures.  Dad always said, "Watch you don't break your arm patting yourself on the back."

"We have failed" doesn't make a great fundraising slogan, but we have failed.  We must admit it.  We must do things differently.

Twenty years.  It seems like yesterday.  It seems like forever ago.

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