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, June 26, 2013

Are We Really Keeping Score?

Every team knows you have to keep score.  Every business knows you have to keep score.

Ask the head of any ALS not-for-profit how last year went.  The answer will typically be financial. "We had a record fundraising year."  "It was a tough economy but we did fine by cutting expenses."   "We are thrilled with $3 million in new government grants."

After the financials, some other statistics may or may not follow.  "We screened 40 therapy candidates in the lab.  Two have 'promise.'"  "Fifty research grants were made."  "We held 4,211 support group meetings helping 12,200 patients." "Twenty-two dead mice eliminated some duds from the research pipeline." "We had ten mentions in national media."  "We helped pass one piece of legislation."  "1,214 new people self-enrolled in the ALS Registry."

Nobody says, "Over 125,000 died again from ALS."

Are we keeping the right numbers on the scoreboard?

Are we demanding the right statistics during the game?

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