Important Information for ALS

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Lorie

Senior member
Joined
May 17, 2007
Messages
551
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Pass the ALS Registry Act, legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry.

Include funding dedicated for ALS specific programs at the Department of Defense.


Support initiatives, such as the reauthorization of the Prescription Drug User Fee Act, that will speed the development of new treatments for ALS.


Link Below:

http://www.alsa.org/policy/priorities.cfm?CFID=1627942&CFTOKEN=85329057


Lorie
 
Lorie,
I totally agree that each and every one of us has to be proactive in bringing ALS to the attention of the public. Ironically, I just received a letter yesterday from my Senator stating that he received my letter in support of legislation that would create an ALS registry. He stated that NIH (of which NINDS - National Institute of Neurological Disorders and Stroke - is a part of) received funding for an additional $619 million above the fiscal year 2006 level. The money is just too much for me to comprehend, but I really believe the ALS registry is a GREAT idea.
 
I received Similar Letter

I also received a similar letter from one of my state senators. Actually three in the last two weeks. I stay on them. We can't sit back and be quiet. Keep up the good work.
We need a lot more on board. They can't hear us if we don't speak up. I'm yelling!

Thanks for the reply.

Lorie
 
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