Advocacy and Public Policy

The ALS Association has led the fight to establish a National ALS Registry, partnering with Congress and the Centers for Disease Control and Prevention to secure funding and to build the registry.   We are excited to report that the National ALS Registry is operational and has begun to identify cases of ALS across the country, including those who have lost their lives to the disease.  In fact, thousands of cases already have been identified through existing national databases, such as those for Medicare, Medicaid and the Department of Veterans Affairs.  

However, this is just the initial phase of the Registry.  The Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (ATSDR) is now preparing to launch the National ALS Registry’s on-line web portal, which will enable all people with ALS across the country to self-enroll in the Registry.  The web portal is expected to “go live” later this year and will be available on the CDC’s ALS Registry website.  

The launch of the portal is the next phase in implementing the Registry.  Once fully implemented, the Registry will identify cases of ALS from across the country and collect data that is urgently needed to advance research into the causes of the disease and how it can be effectively treated.   Ultimately, the ALS Registry may become the single largest ALS research program ever created.  And it will mark the first time that data about ALS cases will be collected in such a comprehensive manner and on a nationwide scale.  

PALS Test ALS Registry Web Portal
At The ALS Association’s National ALS Advocacy Day and Public Policy Conference held in May, the ATSDR provided an update on the latest progress in implementing the Registry (Click here for the latest Registry Update).   The Agency also enlisted the help of several PALS attending the conference who tested a draft version of the online web portal.  PALS from Alabama, Maine, Mississippi, Nevada, and New Jersey provided feedback to the Agency on the ease of use of the portal, readability, layout and a number of other factors that will help to ensure that PALS and families can easily enroll in the Registry and that the Registry collects the vital information that will make it such a powerful research engine.

How Can PALS Enroll in the Registry?
To find out the latest information about the ALS Registry, including when PALS can begin to self-enroll, please sign-up to be an ALS Advocate via The Association’s website, here.   As an ALS Advocate, you will receive the most recent news about the ALS Registry.  And as the launch of the web portal approaches, The ALS Association also will provide detailed information about the Registry on our website, including answers to frequently asked questions, instructions on how PALS can enroll in the registry, flyers that can be shared at support groups, and other helpful information.     

We Still Need Your Help!
Although the Registry is almost fully operational, we still need your help!   That’s because Congressional funding is needed to continue enrollment in the Registry and to ensure the Registry provides vital information to researchers.   Thanks to your efforts, Congress already has provided $16 million over the past five years to design and launch the Registry.  But additional funding is needed and you can help by signing up to become an ALS Advocate.  By doing so, you will learn when your outreach to Congress can make the most difference.  And with your continued efforts, we can ensure that the Registry will fulfill the promise of helping to find the cause, treatment and cure for ALS.

State Advocacy Update
By Jerry Dawson, President

The Chapter launched a major initiative earlier this year to help maintain a $300,000 appropriation in the state budget.  The appropriation had been $400,000 annually but was cut to $300,000 in 2009.  This year, the funding is slated to disappear altogether due to the budget shortfall unless lawmakers take action to reinstate it.

Over the past two months, people who attended our Walks signed postcards to their Senators and Representatives telling them why they care.  When all was said and done, there were over 4,000 postcards mailed and thousands of calls made asking lawmakers to protect and support the ALS appropriation.  Meetings were held with key lawmakers from both the House and Senate.  These meetings included moving testimonies from PALS and caregivers.  We know that we have done all we can to protect this critical funding.  In fact, one prominent Member of the Senate congratulated the Chapter for doing a better job than any other organization of demonstrating the need, showing how the funds are well spent and making sure our message is heard loud and clear.  The campaign was orchestrated by the Chapter’s Advocacy Committee but it would not have been successful if not for the thousands of people who completed their postcards and made their calls.  The Chapter would like to thank everyone who participated in this effort.  There is no question that grassroots advocacy works.
 

Honoring our Veterans Video
As the leading organization advocating for military veterans with Lou Gehrig’s Disease, The ALS Association has produced a video to honor their service and pay tribute to the heroes we have lost in the war against ALS.  The video captures the emotion of a wreath laying ceremony The Association held at Arlington National Cemetery during the 2009 National ALS Advocacy Day and Public Policy Conference in Washington, DC.
The video is available on The Association's official YouTube channel, http://www.youtube.com/thealsassociation (note that you may need the latest version of Adobe Flash player to view the video).

Veterans Website
The ALS Association has created a special Veterans section of our website, http://www.alsa.org/policy/veterans.cfm, that includes important resources for veterans with ALS, their families, caregivers and survivors. The site has answers to frequently asked questions about regulations implemented in 2008 that provide historic new benefits to veterans with ALS.  In addition to health care and monthly disability compensation, benefits also include grants for adaptive housing, the purchase of an accessible vehicle and education assistance to name a few.  Importantly, benefits and compensation also are available for the survivors of veterans who have been lost to ALS.