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.

Tuesday, July 1, 2014

We Delivered, On Time, Every Time

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.




1 comment:

  1. Per an email from Dr. Horton of the CDC ATSDR, publication has been delayed to the July 25, 2014, issue of MMWR .
    See the note at --
    http://wwwn.cdc.gov/als/

    Thanks to all who inquired! We shouldn't have to ask, but I'm grateful for those who are paying attention.

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