Thursday, February 17, 2011

The "A" Words Can Be A Confusing As The "A" Diseases

As a young child, Sleepy always had trouble confusing the word "anecdote" with the word "antidote." It was a cruel vocabulary test that had one of those "a" words that challenged Sleepy's little brain to remember which one was the story and which one was the foil to something bad.

Sleepy finally has them straight, but the irony of that confusion persists. So often with a fatal disease with no effective treatment, we hear the anecdotes and confuse them with antidotes for ALS.

Meaningful data from our national registry is urgent. The importance of patients who are trying treatments to track their data in a public manner is urgent. Improvements in our clinical trial system to enable patients to contribute to scientifically meaningful projects is urgent.

Until we address those urgent needs like we know the meaning of the word "urgent," we will continue to confuse anecdotes with antidotes.

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