Congress Funds ALS Registry, Respite Care



A few minutes ago, we secured two important victories in the fight against ALS as the United States Senate voted to provide an additional $5 million for the national ALS registry and $2.5 million in funding for respite care! The funding for both programs was included in the Fiscal Year 2009 Omnibus Appropriations bill, which is expected to be signed into law by President Obama in the coming days.

The ALS Association has advocated this funding for both programs since the FY 2009 appropriations process began in February 2008. With passage of the Omnibus bill, we now can declare victory in accomplishing each of our top public policy priorities from last year! Thanks to the efforts of advocates across the country who reached out to their Members of Congress to tell the ALS story, in the past year alone we have:
Enacted the ALS Registry Act and secured $5 million in continued funding;
Helped to establish new regulations at the VA to make ALS a service connected disease, providing military veterans and their survivors access to more than $500 million in health and disability benefits;
Continued funding for the ALS Research Program at the Department of Defense through a $5 million appropriation. A total of $10 million has now been provided to the ALSRP, which is specifically designed to identify new treatments for ALS; and
For the first time, secured appropriations to begin funding the Lifespan Respite Care Act, which we originally helped to pass in 2006 and will support state-based respite care programs.
Taken together, our advocacy efforts are advancing ALS research, improving patient care, and creating the roadmap that will lead us to a treatment and cure for this disease! Thank you to everyone in the ALS community whose persistence and year-round efforts made these victories possible!

Stay Involved!
Despite these victories, we face many challenges as we work to continue this success and accomplish our 2009 Public Policy Priorities. That's why it's absolutely critical that you stay involved in our efforts. As ALSA Advocates, you are making a difference, so please keep an eye out for our action alerts throughout the year and urge others to join our cause by becoming ALSA Advocates too! We must continue these and other vital programs in FY 2010!

National ALS Registry
The $5 million in additional funding for the registry is a more than $2 million increase over last year's funding level and brings total funding for the national ALS registry to $10 million! This funding has led the Centers for Disease Control and Prevention to begin to establish the building blocks for the registry and identify the most effective ways to identify ALS cases and share information.

The $5 million in funding we secured for FY 2009 will enable CDC to expand on the existing projects and begin to collect information on a broader scale. In order to keep up-to-date on the latest information about the registry, including how you or your family members may be able to participate, please make sure you are signed up to be an ALSA Advocate via our website. If you already are signed up, please update your profile and select ALS Registry as an issue of interest. In this way, we can provide you with the most recent information about this important research program.

Respite Care
In 2006, The ALS Association helped lead the fight to enact the Lifespan Respite Care Act. The legislation, which was signed into law by President Bush, 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. With the $2.5 million we secured for FY 2009, this important program can begin to be implemented and deliver vital respite services to people with ALS and their families. We will provide additional information to ALS Association Chapters and families in the coming weeks and months to let you know about opportunities made available by this funding.

National ALS Advocacy Day
Join us in Washington, DC May 10-12 for the 2009 National ALS Advocacy Day and Public Policy Conference. This empowering event has directly led to our successes, including the ALS registry and respite care. In addition to helping to secure funding and support for ALS research and patient services, attendees at this year's conference also will learn the latest updates on programs made possible through our advocacy, like the national ALS registry, DOD research and stem cell research.

Help us continue to make a difference in 2009! Information about this year's conference, including registration and hotel information, is available on our website at www.alsa.org/policy/alsday.cfm.

If you have any questions or would like more information about this update, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

Thank you!