I'll never forget one disappointing moment that had little to do with the Registry itself.
In the last session, people chimed in with suggestions for the coming year. Fine.
One world-famous ALS clinical research neurologist suggested that there be a meeting of ALSA and MDA clinic doctors the afternoon before the big ALS MND Symposium in December to speak to the value of the Registry. Fine.
He turned to the CEO of the ALS Association to ask for coordination of such a meeting. Fine.
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These are employed neurologists. Buy your own lunch.
This is a Registry project that burns through a budget of $10,000,000 every year. It can pop for an urn of coffee and some sodas in a hotel meeting room.
Let the pharmaceutical company invest all it can in ALS research. Expect the pharmaceutical company to invest all it can in ALS research. Treat that relationship in a businesslike and respectful and ethical manner. Don't treat it like your personal piggy bank or a money tree to be shaken down.
There's no such thing as a free lunch. Think about it.
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