Advocates Travel to DC

The month of May is National ALS Awareness Month in the United States and with it comes an opportunity through the ALS Association’s 2009 ALS Advocacy Day and Public Policy Conference to spread the word about what needs to be done to help people living with ALS, better known as Lou Gehrig’s disease. The conference was held on May 10-12 as advocates from across the nation descended upon Washington to speak with their leaders about the critical work that needs to be done.

The conference was the largest ever, with over 800 participants (20 from North Carolina). Among those participating were former NFL tight end Mike Rucker, Miss North Carolina 2008 Amanda Watson, and three People with ALS (PALS);Russell Clary, Don Koenig and Larry Kincaid.

Rucker, who lost his grandfather to ALS, shared his moving story at a candlelight vigil on the steps of the Carnegie Museum in Washington, D.C.Watson, whose platform is ALS, held a session during the conference for families and children, which allowed them to share their feelings with others who have been affected by ALS. The poignant moments brought shared feelings of hope and remembrance to those who were in attendance.

Past advocacy trips have resulted in significant steps being taken for those who have ALS; steps that the ALS Association believes will eventually lead to a cure. Some of these achievements include helping to get the National ALS Registry Act passed, significant increases in funding for research through the National Institutes of Health and the Department of Defense, the Medicare waiting period being waived for ALS patients, and veterans with ALS automatically receiving service connected disability benefits.

On the docket for this year’s trip was to push for the appropriation of $5 million as part of the 2010 Labor/HHS Appropriations bill that will allow the continuation of the ALS registry at the Centers for Disease Control and Prevention. This funding will allow the CDC to begin to implement the ALS Registry as well as to begin to collect information on a broader scale.

Another big item on the agenda was to advocate for $10 million toward continuing the Peer Reviewed ALS Research Program at the Department of Defense (DOD). Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans are nearly twice as likely to die from ALS as those who have not served in the military.
With the implementation of these programs, the ALS Association believes that great strides toward discovering a cure, can, and will be taken.