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, July 16, 2014

People With ALS And Their Caregivers Need A Place At THE Table, Not Just A Table

It's too easy to break out another table and say that people with ALS have a place at the table.  A separate table is not THE table.

People with ALS and their caregivers need to be at the same tables with researchers and clinicians.  They need to talk directly.  

I was fortunate to go to a college where faculty and administrators sat with students in the same cafeteria at the same tables.  That was a good thing for all.  A few years later I worked at a large corporation where the man whose name was on the company skipped the management dining room and joined employees at the tables in the regular cafeteria.  That was a good thing for all.

ALS meetings, be they scientific or policy or clinical, need to include people with ALS and their caregivers.  And "include" doesn't mean a separate session or a separate table.  When meetings exclude the very people with the disease, it speaks volumes about one big blind spot in the fight against ALS.

We can and must do better.  People with ALS and their caregivers must be welcome at every ALS meeting, both in person and virtually.  They must be at the table, both in person and virtually,  whenever direction is given to the fight.  They are the ultimate experts regardless of what scientific and organizational egos think. 

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