ALS Association of Greater New York Met with Legislators in D.C

Washington D.C. - From May 11th through 14th the ALS Association of Greater New York spent three days in Washington D.C. for the ALS Association's Advocacy Day and Public Policy Conference. Advocates met with their legislators and aides in the House of Representatives and the Senate to request funding dedicated for ALS Specific programs and to encourage passing of specific legislation.

The ALS Association of Greater New York is encouraging the Senate to pass the ALS Registry Act (S. 1382), which has already passed in the House (HR. 2295). The ALS Registry Act will establish a registry at the Center for Disease Control (CDC) to help identify the incidence and prevalence of ALS in the United States and collect data needed for ALS research, disease management and the development of standards of care. While projects are underway to determine the most effective and efficient ways to identify cases of ALS and to share information, funding is needed in FY 2009 to expand these projects. Along with the bill is a request for $5 million to continue the work already begun at the CDC.

On Oct. 16, 2007, Representative Eliot L. Engel (D - NY) introduced a companion ALS Registry bill (H.R. 2295), which passed by a 411-3 vote. The Advocates met with Representatives in the House to thank them for their support and to request that they back the appropriation of $5 million needed to continue the work at the CDC. The national patient registry will promote a better understanding of the disease and help determine causes of ALS, significantly increasing efforts to find treatment and a cure.

The ALS Advocates also looked for the support of members of Congress for $5 million in additional funding to continue the Peer Reviewed ALS Research Program (ALSRP). In 2007 the Department of Defense provided $5 million to support the ALSRP, which is focuses on clinical research leading to new treatments for the disease. Recent studies supported by the DOD and the Veterans Administration (VA) linked military service to a greater risk of contracting ALS by a factor of two giving the DOD a greater stake in finding treatment and a cure for ALS. Advocates looked specifically to members of the House to introduce legislation (H.R. 5454) that would establish ALS as a service connected disease and ensure that military veterans with ALS have access to full disability benefits through the VA. While the studies that showed 1991 Persian Gulf War veterans are twice as likely as non-military persons to contract ALS, other studies show all veterans are at an increased link to the disease. The VA has not extended service connected benefits to all veterans with ALS, leaving thousands of our vets unable to access VA benefits that they deserve.