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.