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.

Wednesday, November 23, 2016

We The People Get The Message

We simply don't accept it.

This year's CDC ALS Registry annual meeting was August 3-4, 2016.  It was blacked out.  No webstream was provided this year.

Here is some background:
http://als-advocacy.blogspot.com/2016/07/transparency-is-friend-of-good-public.html

Over three months later, we still have no public transcript, no minutes, no recording, no report from this meeting.

The project has been expensive.  We think that the cumulative total of our investment as taxpayers is close to $80 million.

The project results have been sparse and questionable.

Participants at the annual meeting are handpicked by those being compensated for work on the project.

The chief lobbying agency for the project, the ALS Association, is also a well-paid contractor on the project.  In a convenient cycle of silence, they are approaching time to have another $10 million etched into next year's appropriations without any discussion with the hundreds of advocates they like to send to Capitol Hill with their requests.

Our questions go answered.  We are kept in the dark.  We're tired of this.  The project and money are too important to be on a $10 million annual autopay without accountability and transparency and substantial results.

We the people do not accept this.


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