Sunday, February 27, 2011

Ethel, I Think We're Fighting A Losing Game


Watch a classic moment in television.

Watch the candy. There are only four pieces of candy in front of them at any moment in time, but they keep coming and coming and coming and coming.

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Monday, February 28, is Rare Disease Day. It's a good opportunity to shine some light on diseases that get little attention.

ALS falls into the "rare" category because of a definition found in the Rare Disease Act of 2002 -- "any disease or condition that affects less than 200,000 persons in the United States."


At any moment in time, there are far fewer than 200,000 Americans with ALS passing in front of us, but the throughput of this disease is relentless. There are around 6,000 new diagnoses in the U.S. every year, and there are a similar number of funerals. "Rare?" Perhaps if you only look at those few living patients right in front of you, but the line goes fast and the patients die quickly.

It's not funny, but that line of chocolates that just can't be dealt with quickly enough tells the story. Ethel, I think we're fighting a losing game. We must change our strategy to deal with ALS. We must slow down or stop that line.

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