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.

Monday, July 29, 2013

Howdy, Partners

We think that the supporters of the CDC's ATSDR National Registry and our major ALS organizations deserve some candid and clear information about who has been paid to do what from the government funds that we fought hard to have approved.

From ALSA's 2012 Annual Report, the most recent on its website, under the heading of "Fighting for the Interests of the ALS Community," there was mention of a "partnership" with the CDC to help raise awareness of the National ALS Registry.  There was absolutely no mention of any kind of contractual or vendor relationship or compensation related to the $6 million which we taxpayer/advocates requested of all taxpayers for the Registry.


 
 
Then we stumbled across this cool million (quite by accident) a few weeks ago at usaspending.gov.



 
 
And what in the world is this about?


 

We understand that the ALS Registry powers that be are meeting in Atlanta this week.  We hope that they'll shine some sunshine on their proceedings and processes and "partnerships."

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