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Legislative Priorities

Appropriate $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.

The Administration and Congress have made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 (P.L. 110-373) and by appropriating funding to develop and implement the registry, including $6 million in FY 2010. These actions have enabled the CDC/ATSDR to launch the first phase of the registry, including creating a national ALS registry website that is expected to enroll patients with ALS beginning in 2010.When fully operational the registry will identify, for the first time, the number of cases of ALS in the U.S. and collect data that is urgently needed to help find the causes of the disease and how it can be treated, prevented and, ultimately, cured.

However, increased funding is necessary in FY 2011 to fully implement the registry, allow people with ALS across the country to self enroll in the registry and enable the CDC to coordinate with other federal agencies to identify ALS cases in all 50 states through existing databases. Moreover, funding will facilitate the implementation of strategies that ensure the registry captures ALS cases in rural and urban underserved areas. These steps are vital elements of implementing the ALS Registry Act and fulfilling the promise of the registry to advance public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease.

UPDATE: Led by U.S. Representatives Eliot Engel (D-NY) and Peter King (R-NY) nearly 40 Members of Congress sent a letter urging the House Appropriations Committee to provide $10 million in funding for the National ALS Registry in FY 2011.

Appropriate $15 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig’s Disease as those who have not served in the military. These findings were most recently confirmed by a September 2009 study funded by the VA and the National Institutes of Health.

In order to support our nation’s military heroes in the fight against ALS, Congress and the Department of Defense established the ALS Research Program in FY 2007. Unlike many other research programs, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed. While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2010, the current funding level will only be able to support approximately 3 to 4 projects. Yet over 90 were submitted to the program in FY 2009. As a result, under the current level more than 95% of submitted projects will not receive funding. Opportunities to discover and deliver a treatment to veterans will be lost, leaving them – and all people living with the disease – with no effective treatment option. By appropriating $15 million for the ALSRP in FY2011, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us.

UPDATE: United States Senators Robert Casey (D-PA) and Olympia Snowe (R-ME) are working with their colleagues to send a letter urging the Senate Appropriations Committee to provide $15 million in funding for the ALSRP in FY 2011.

To learn what you can do to help find a treatment and cure for ALS, please visit the Advocacy Action Center of our website at http://capwiz.com/alsa/home/.