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, January 7, 2009

ALS Registry - Yo, Secretary-elect Daschle, Over Here!

How do we get HHS Secretary-elect Daschle to see the economic and humanitarian common sense to funding the ALS Registry that was authorized by the ALS Registry Act?

It appears that there is a huge healthcare money pie being divided up now...
http://www.politico.com/news/stories/0109/17119.html

How do we get Mr. Daschle's attention that we have a public health crisis that can't wait?

Getting authorization for an ALS Registry sure felt good, but authorization without stepping up to the plate with funding doesn't do anything but make those of us who are healthy feel good.

1 comment:

  1. It looks like AARP is advocating for their priorities http://thehill.com/business--lobby/stimulus-health-reform-top-broad-aarp-agenda-2009-01-06.html

    "In the meantime, the AARP is busy promoting its priorities for the economic stimulus bill President-elect Obama wants on his desk shortly after inauguration, seeking to ensure that older Americans benefit from the measure, which is approaching $1 trillion in its potential cost."
    ...
    "Specifically, the AARP wants Congress to set aside up to $50 billion to set up electronic health records and other health information technology, and to encourage employment in the nursing sector, where there is a severe shortage of workers."

    Will other advocacy groups have the $ all spoken for before we get an ALS Registry funded??????

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