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.
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."