ALS Registry Act Anyone with computer can register and take survey online, really? Lol no medical records or medical diagnose needed, this is meant to create false data and large number just to make ALS more credible with larger number of register, wow. Online registration alsa.org/assets/pdfs/advocacy/quick_start_guide.pdf Some site claims only 12,000 US patient with ALS so far but ALS associate claim 30,000 so far but still rare dor a disorder to be getting large amount of money from government plus donation from people like you. The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Each person battling ALS is a hero. Family, friends, and all those who observe the way ALS patients fight this disease see their courage, resolve, and dignity. Registering and taking the surveys can help make a difference in the lives of those living with ALS today and for generations to come. Source alsa.org/als-care/als-registry/ Through The Association’s partnership with Members of Congress, we have built tremendous support for the ALS Registry Act, legislation that would authorize $25 million to establish a national ALS registry overseen by the CDC/ATSDR. The legislation, which won the support of 215 U.S. Representatives and 50 Senators in 2006, is expected to be reintroduced in Congress soon. However, because it can take years to create a fully-functioning registry (the World Trade Center Health Registry did not begin to collect data until two years after Congress authorized and appropriated funding to implement it), The Association also has pursued opportunities to fund the registry via the annual Congressional appropriations process, before Congress passes the authorizing legislation (the ALS Registry Act). Our goal is to obtain immediate funding to allow CDC/ATSDR to begin to create the building blocks for the registry as soon as possible. In this way, we can create the strongest possible foundation for the registry and help move this initiative forward much sooner than otherwise would be possible. Congress and President Support Funding for a National ALS Registry In 2005, The ALS Association successfully worked with Congress to direct nearly $1 million of existing CDC/ATSDR funds to begin pilot projects that will evaluate the science to guide the creation of a national ALS registry. President Bush has proposed to build on that progress by including funding for the registry in his FY 2008 Budget– the first time the President has included the registry in his annual budget, and a tremendous victory considering today’s fiscal climate and competing budget priorities. CDC/ATSDR Establish “Building Blocks” for National ALS Registry Over the past year, The ALS Association has been actively engaged with the CDC/ATSDR to develop pilot projects which will evaluate the science for a national ALS registry. CDC/ATSDR has launched three registry-related pilot projects, currently underway in Georgia, Minnesota and South Carolina. The goals of the projects are to: (Web Page; Wed Feb 02 15:26:00 CST 2011) The U.S. Senate has appropriated an additional $7.5 million for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a 50% increase over last year! The funding is in addition to the $6 million (20% increase) Congress ... Description: The U.S. Senate has appropriated an additional $7.5 million for the ALS Research Program (ALSRP) at the Department of Defense (DOD), a 50% increase over last year! Contact:Carrie Munk The ALS [email protected] FOR IMMEDIATE RELEASE Ice Bucket Challenge Donations Reach $79.7 Million Washington, D.C. (August 25, 2014) — As of Monday, August 25, The ALS As... Description: As of Monday, August 25, The ALS Association has received $79.7 million in donations compared to $2.5 million during the same time period last year (July 29 to August 25). These donations have come from existing donors and 1.7 million new donors to The Association. Its probably $100,000,000 by the time of this post. Most of these money will buy mansions, fancy car and expensive clothes for few staff and board member with only 27% will go into unspecific research institute for unspecific purpose, you can guess big pharmacies company that will make fake drug with enough side effect to kill you. Source alsa.org/search.jsp?Image2.x=0&Image2.y=0&query=ALS+national+registry+
Posted on: Wed, 03 Sep 2014 06:32:03 +0000
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