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, February 23, 2017

Partnership, Indeed


From an old ALS Association web page on government partnerships:  http://web.alsa.org/site/PageNavigator/ALSA_research_our_approach_partnerships_government

"The Association also has worked with Congress to secure $58 million for the registry, including $10 million in 2016."

Today ALS Association staff are on Capitol Hill for #ALSHillDay17 requesting $20 million more from our legislators for the CDC ALS registry.



That's a grand total of $78 million.  

$78 million for a project that isn't accomplishing its core mission. 

The CDC blacked out the invitation-only annual meeting and has failed to produce a public transcript or recording of that meeting before this additional appropriation request.  That in itself is revealing.

Think about that.

This "partnership" is out of control.  This is wrong.

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