ALS Association Achieves Historic Victories in Washington, DC!

The ALS Association and advocates across the country achieved three huge victories in the fight against ALS.  In 2008, we enacted the ALS Registry Act, which will establish the first ever nationwide ALS patient registry and may become the single largest ALS research program ever!  We helped to implement historic new regulations that provide military veterans with ALS, their families and survivors access to full health and disability benefits worth more than $500 million!  And we worked with Congress to appropriate $5 million for the ALS Research Program at the Department of Defense, a program that is specifically designed to find new treatments for ALS.

These victories will benefit everyone whose life has been touched by ALS and clearly demonstrate that our advocacy efforts in Washington DC are making a difference in the fight against Lou Gehrig’s disease.   

That’s why we urge you to join our efforts and help us advocate for even greater accomplishments for the ALS community – accomplishments that will improve the lives of people with ALS and their families today and lead us to a treatment and cure for this disease.  If you want to help make a difference in the fight against Lou Gehrig’s disease, please join our advocacy efforts and sign up to be an ALS Advocate at: http://capwiz.com/alsa/mlm/signup/.

Additional information on these tremendous victories is available below.

ALS Registry Act Signed into Law!

After a nearly four year fight, The ALS Association succeeded in passing the ALS Registry Act.   President Bush signed the legislation into law on October 8, 2008!   The ALS Registry Act will establish the first ever national ALS patient registry at the Centers for Disease Control and Prevention, providing researchers, scientists and clinicians with unprecedented new information that is needed to improve care for people with ALS, learn what causes the disease and develop a treatment. 

Thanks to our efforts and those of advocates across the country, we were able to build a bipartisan coalition in support of the bill that could not be stopped.  In fact, the Senate passed the bill without objection and the House passed it by an overwhelming 415-2 vote!

We are now prepared to take the next steps in partnering with the federal government to build the registry. However, we need you to continue to stay involved (Become an ALS Advocate). That's because we must work with Congress to secure funding for the registry. Over the past three years, The ALS Association has worked with Congress to appropriate nearly $5 million to launch registry pilot projects, but much more will be needed in order to expand upon these projects and begin to collect information on a broader scale.  

Additional information, including a press release announcing enactment of the ALS Registry Act as well as quotes from Members of Congress, is available on our website at http://www.alsa.org/news/article.cfm?id=1365.

New Regulations Provide Over $500 million in Benefits to Veterans with ALS and Families

On September 23, 2008 the Department of Veterans Affairs issued historic regulations that establish ALS as a service connected disease.  These new regulations mean that veterans with ALS, their families and survivors are eligible to receive the highest level of VA health and disability benefits – benefits that are worth more than $500 million!  Importantly the new rules apply to any veteran with ALS, regardless of when or where they served in the military or how soon they were diagnosed after leaving the service.  In addition, the survivors of veterans we have lost to the disease are eligible for benefits even if their loved one passed away prior to implementation of these new rules. 

The ALS Association has been the leading organization advocating for this policy change at the VA for many years and we are proud that we can now declare victory! Additional information about the new rules, including press releases from The Association and the Veterans Administration, how to apply for benefits, and answers to frequently asked questions are available on The ALS Association website here:  http://www.alsa.org/policy/veterans.cfm?.  The site also includes details on the benefits available to veterans and their survivors, including disability compensation payments worth as much as $8,000 each month, health benefits, adaptive housing grants, aide and attendant benefits and much more. 

While we have secured an important victory with these new regulations, much more work remains, for we need to learn why our veterans are at greater risk, take action to protect them and, ultimately, find a treatment.  So we need all veterans to stay involved in our efforts.  If you are a veteran, please join our Roll Call of Veterans to receive the latest developments on issues important to veterans and learn how you can advance the fight for a treatment and cure.  Sign up on our website at: http://capwiz.com/alsa/mlm/signup/.

Congress Appropriates Additional $5 million for ALS Research Program at DOD

The ALS Association secured another victory in the fight for a treatment when Congress passed legislation to appropriate an additional $5 million in funding for the ALS Research Program (ALSRP) at the Department of Defense.  The President has signed the legislation into law.

We now have a congressionally established program at the DOD that is dedicated solely to ALS research!  The ALSRP is the only ALS specific program at the DOD and is the only program focused on translational research with the goal of finding new treatments for ALS.  This also is an especially significant victory not only because very few funding bills even passed Congress in 2008, but also because we overcame a significant amount of competition for scarce federal dollars.

While this is the first time Congress has ever provided funding for the ALSRP, the program was initially launched in 2007 when The ALS Association partnered with DOD to bring new focus to their ALS research portfolio.  With this new funding, the ALSRP will have received $10 million in total funding over the past two years.  The funding is available to ALS researchers across the country and will provide the ALS community with greater opportunities to develop meaningful treatments.