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.


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.

Saturday, February 26, 2011

Let's Compare

Which makes a more compelling advocacy case?

It's impossible to drive forward if we're always looking in the rear view mirror at modest accomplishments. The fight against ALS needs smart business cases. We need meaningful investment in both research and in basic assistance for those dealing with the disease today.

Same old same old will give us same old same old, and that's just not getting the job done! It's wrong for people today to be told that they have Lou Gehrig's Disease with Lou Gehrig's prognosis.

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.