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.

Saturday, September 21, 2013

Just The Facts, Please

History is an essential asset, yet in the fight against ALS, we do a very poor job of retaining it.

The nature of ALS is that the people dealing with it don't have memories of what happened five or ten or twenty years ago.  They are slapped with a diagnosis and are largely on their own to find information and to figure out whom to trust.

We need to do a better job of retaining what really happened two or five or ten or twenty years ago.  We need to make the fact-finding easier for those with ALS who seek a ray of hope.

Occasionally those of us who have been paying attention to matters ALS for more than a decade see or hear someone spouting revisionist history.  It may be innocent, or it may be manipulative.  In either case, it's wrong and it does not help the fight move forward.

Today's technology could give us an excellent electronic archive of historical facts.  It's time for organizations and individuals to contribute facts lest we forget or are led astray or repeat the mistakes of the past.

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