We want the 109^th Congress to:

• Pass the ALS Registry Act (H.R. 4033/S. 1353), legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry.   The establishment of a national ALS registry will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care.  A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.
  
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• Include funding dedicated for ALS specific programs in the Fiscal Year 2007 Department of Defense (DOD) Appropriations Act.  Studies, including those conducted by the Department of Defense, Department of Veterans Affairs and researchers at Harvard University, repeatedly have shown that ALS occurs at a greater rate in military veterans.   By continuing to fund ALS specific programs through the DOD Appropriations bill, Congress will enable important ALS research to continue at DOD, help to determine why those in the military are at a greater risk of the disease, and ensure that our nation takes appropriate action to protect the health and lives of our military men and women who each day risk their own lives in defense of this country.  Importantly, research conducted by the Department of Defense also will yield important clues and data about ALS that will benefit all people suffering from the disease and will help this nation make progress in finding a treatment and cure for ALS.
  
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• Support initiatives that will speed the development of new treatments for ALS.  Currently, only one drug has been approved by the Food and Drug Administration specifically for the treatment of ALS.  Unfortunately, Riluzole, which was approved by the FDA in 1995, only has shown modest effects, prolonging life by just a few months.  However, Congress and the Administration can help change this by supporting efforts, such as the FDA’s Critical Path Initiative, that seek to tear down the obstacles and barriers that hinder innovation and slow the development of life-saving and life-enhancing new drugs and biologics.  Importantly these efforts also should examine ways not only to improve the drug development process, but also to ensure that people with ALS have timely access to promising new investigational treatments.  This is critically important to people with ALS, a disease that has no cure and is fatal in an average of two to five years following diagnosis.  For people with ALS, it is vital that Congress and the Administration partner with the ALS community and help us to bring new therapies from the lab to the bedside as soon as possible.