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.

Friday, May 23, 2014

Time To Put Away The Theatrical Fog Machine

Yesterday an alert advocate for people with ALS sent me yet another one of those things that we stumble upon online.


May 7 was the day when we sat in a large meeting room in the JW Marriott for ALSA's advocacy briefing before hundreds of us were dispatched to Capitol Hill to ask for funds for the CDC's ALS Registry.

On that very day the CDC committed almost a million more dollars to the coffers of ALSA and the MDA.  When I saw the screen shot, I could not believe the date.

Was that not worth mentioning to us?  Was that not pertinent?  Why was that not included in the explanation of the project funding and status?  Did they forget about it?  The timing is interesting.

Instead of transparency on this project it seems like we get a continuous stream from a theatrical fog machine.  We were sitting there on that very day, for Pete's sake.  Those are big contracts.  That's a lot of revenue for those charities.  Not a peep.  

Time to stop the fog and speak to advocates and taxpayers clearly.  Transparency is a serious obligation.  Fog is a bad sign.

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