Yes, we American taxpayers deliver the funds for the CDC to do its work. We deliver every April 15. Every year. On time.
Yes, we ALS advocates delivered the requests for the CDC to produce an ALS Registry. We've delivered over $40 million dollars. Every year we answer the ALSA call. On time.
As recently as May we were promised at the ALSA Advocacy Conference (yes, we showed up on time and went to Capitol Hill to request more funds on time) that the first data sets from the Registry would finally be published in MMWR in June. We assumed that was June, 2014.
Every week in June, we looked at http://www.cdc.gov/mmwr/ to find the data they promised. Nothing.
We paid $40 million. They didn't deliver anything... even an excuse.