2008 National ALS Advocacy Day
and Public Policy Conference

Lighting the Way for a Treatment and Cure

The ALS Association's National ALS Advocacy Day and Public Policy conference is making a difference, and clearly demonstrates the power each of us has to change the world.  That is why we, at the Georgia Chapter, hope you will join us for the 2008 conference which will take place in Washington, DC on May 11-13th.  Please note the registration fee is waived for people with ALS and for a caregiver traveling with them to the conference.   Contact our office for more information at 888-636-9940. 

Click here for additional information. 


 If you cannot join us in DC, please sign these letters to our Georgia Senators and our Georgia Delegates.  Please mail them to our office (1955 Cliff Valley Way, Suite 116, Atlanta, GA 30329) or fax to 404-636-9949. 
 

The ALS Association’s 2008 Public Policy Priorities

We want the 110th Congress to:

• Pass the ALS Registry Act (S. 1382) and appropriate $5 million in funding as part of the FY 2009 Labor/HHS Appropriations bill to continue the ALS registry at the Centers for Disease Control and Prevention. Congress has provided nearly $5 million, including $3 million in FY 2008, to establish a national ALS registry at the CDC to 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. Four projects currently 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, begin to collect information on a broader scale, and explore opportunities for the registry to facilitate public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies to identify new treatments for the disease. It also is essential that the Senate pass the ALS Registry Act to authorize the CDC to take the next steps in creating a national registry and ensure coordination and collaboration with other federal agencies, such as the NIH and the VA. S. 1382 has more than 70 cosponsors and was favorably reported by the HELP Committee in 2007. The companion bill passed the House in 2007 by a 411-3 vote.

• Appropriate $5 million in funding as part of the FY 2009 Department of Defense Appropriations bill to continue the Peer Reviewed ALS Research Program (ALSRP). Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others have repeatedly found that military veterans are approximately twice as likely to die from ALS as those who have not served in the military. In FY 2007, the Department of Defense provided $5 million to establish the Peer Reviewed ALS Research Program. The ALSRP is the only ALS specific research program supported by the DOD and is designed to translate basic science into new treatments for ALS. The ALSRP is modeled after The ALS Association’s TREAT ALS initiative (Translational Research Advancing Therapy for ALS). Unlike many other research efforts, which focus on basic science, the ALSRP is promoting clinical research, leading to new treatments for the disease. By continuing to support the ALSRP through the FY 2009 DOD Appropriations bill, Congress can advance important research and help determine why our nation’s veterans are at greater risk of the disease. In addition, DOD funded research not only can enhance our understanding of the disease, but also lead to new treatments, which will benefit our veterans and all people whose lives have been touched by ALS.

• Support initiatives to improve access to long-term care services, including funding to implement the Lifespan Respite Care Act and to position The ALS Association to access respite care services. Virtually every family who is touched by ALS has a need for long-term care services, including respite care. Respite care provides temporary relief to ALS caregivers and allows them much needed time off, while also providing quality care for people with ALS. Respite care may take place at home and it is believed that respite care helps keep families together, prevents abuse and neglect, and forestalls premature, costly institutionalization and possible impoverishment. The ALS Association worked with Congress to enact the Lifespan Respite Care Act, which was signed into law in 2006. The bill authorizes federal grants to the states and other entities to help families and organizations, like ALS Association Chapters, access quality and affordable respite care services and funding. However, it is essential that Congress provide funding to implement the program and ensure families and people with ALS have access to vital respite care services. It also is important for The Association to facilitate Chapter relationships with local lifespan respite coalitions and states to enable them to access locally administered respite programs.