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.

Thursday, June 29, 2017

Dear Contractors, Please Come Prepared

Dear MDA, ALS Association, Les Turner ALS Foundation,

It's nearing time for the CDC's Annual ALS Registry Meeting (at least we think it is).  You know the date for sure because you are the only organizations allowed to nominate participants for the meeting.

You are also well paid as education-and-outreach contractors on the project.

Please prepare some very simple data for the meeting so that we all can measure success.
1. How many people living with ALS were in your clinic system at the end of 2016?
2. How many new people with ALS entered your clinic system during 2016?
3. How many of those new people with ALS in your clinic system also self-enrolled in the CDC's ALS Registry in 2016?
That's it.  Three simple measures will make that meeting a lot more productive.  Please be prepared.

Thank you.

Sincerely,

@ALSadvocacy

p.s. For inquiring minds, the most recent annual payments to the three per usaspending.gov were:
Les Turner ALS Foundation $100,521
ALS Association $376,852
MDA $548,658

No comments:

Post a Comment