2009 Legislative Priorities
The ALS Association Continues to Create the Roadmap to a Cure
The ALS Association and advocates across the country realized significant advocacy victories in 2009 that are continuing to create the roadmap that will lead to a treatment and cure for Lou Gehrig’s Disease. Listed below are a few of our 2009 successes, which could not have been achieved without the active participation of people with ALS and their families, ALS Association Chapters and thousands of others who told the ALS story to Members of Congress throughout the year.
Whether it’s increasing funding for the National ALS Registry, helping military veterans with ALS access vital benefits, or securing additional appropriations for the ALS Research Program at the Department of Defense, our advocacy is making a difference! If you have not already become an ALS Advocate, please do so today via our website here, http://capwiz.com/alsa/mlm/signup/. Help us continue to create the roadmap to a cure for ALS.
The ALS Association thanks everyone in the ALS community for their efforts in 2009!
Recap of The ALS Association’s
2009 Public Policy Priorities
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The Association worked with Congress to appropriate an additional $6 million for the national ALS registry at the Centers for Disease Control and Prevention, which may become the single largest ALS research project ever created. The funding is a 20% increase over last year, bringing total funding for the registry to nearly $16 million. This increase is particularly significant considering that overall funding for the CDC was only increased by 1.9%. The registry already is operational and is beginning to identify cases of ALS across the country using national databases such as Medicare, Medicaid and the Veterans Administration. In partnership with The Association, the CDC also has created a national ALS registry website (www.cdc.gov/als) which is expected to enable people with ALS to self enroll in the registry later in 2010. Additional details are available here: https://ssl.capwiz.com/alsa/attachments/1_ALS_Registry_Update__March_2010_FINAL_.pdf. |
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We secured a 50% increase in funding for the ALS Research Program (ALSRP) at the Department of Defense, as Congress provided $7.5 million for the program this year. The ALSRP is the only ALS specific program at DOD and is focused on translational research with the explicit goal of finding a treatment for ALS. With this funding, Congress and DOD will have generated a total of nearly $18 million for ALS translational research in just three years |
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In FY 2009, more than 2,000 military veterans with ALS, their families and survivors were awarded benefits totaling over $129 million! These benefits include monthly disability compensation, adaptive housing grants, aid and attendant benefits, and full health care and are the result of historic regulations The Association helped to champion that establish ALS as a service connected disease. The regulations do not expire so benefits will continue to be available to veterans with ALS and their survivors regardless of the date of diagnosis or death. |
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We championed additional funding for research as part of the Economic Stimulus package enacted into law in 2009, which resulted in more than $34 million in grant funding awarded for ALS research projects across the country over 2 years. As a result, total government funding for ALS research in 2010 may increase by as much as 30% to between $70 and $80 million. |
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The Association once again helped to preserve access to power wheelchairs as we successfully advocated against Medicare cuts that would have limited access to the complex power wheelchairs that are so vital to people with ALS. |
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For the second consecutive year, Congress appropriated an additional $2.5 million for respite care, bringing total funding for respite to $5 million over the past two years. The funding is available to states on a competitive grant basis and will be used to expand the ability of states to support local respite care programs available to people with ALS and other diseases. |
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