ALS Advocacy

ALS Advocacy
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.

Thursday, August 3, 2017

Buy Your Own Lunch

Over the last few days we watched the webstream of the CDC's annual ALS Registry meeting.

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.

He then matter-of-factly turned to a representative of a pharmaceutical company actively involved in ALS research and suggested they "sponsor" the event and even perhaps provide lunch.  Now wait a minute.

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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