Sign Up To Be An Advocate!
ALSA's Capital Office
2009 ALS Advocacy Day Advocacy Delivers the Roadmap to a Cure
“I truly didn’t grasp what a powerful experience this was until I attended in person,” said Stephanie Steele, after attending her first national ALS Advocacy Day and Public Policy Conference, which was held in the nation’s capital in May. Upon arrival in Washington, she quickly learned what many do on their first trip to the conference: The power of the conference is found in the people attending and the knowledge that families impacted by ALS are not alone in the fight – that they can make a difference. In fact, advocates from across the country representing the entire ALS community – people with ALS, families, caregivers, researchers and clinicians - came together for the 2009 conference to share their hopes and experiences and to join The ALS Association in creating the roadmap that will lead to a treatment and cure. The ALS Association’s Public Policy Conference is part of a year-round strategic effort to improve patient care, advance research and empower people with ALS through advocacy. By leveraging the single largest source of ALS research funding, the federal government, the Advocacy Conference is making a difference in more ways than one. For example, unlike virtually anything else experienced by families with ALS, advocacy presents people like Stephanie and Daryl with the opportunity to play an active role in the fight against the disease - to fight back against ALS. Indeed, the accomplishments that resulted from last year’s conference left the government poised to spend more than $1 BILLION on ALS over the next 10 years. Armed with a story to tell and a passion to make a difference, Stephanie and the hundreds of ALS Advocates who attended this year’s conference flooded the Halls of Congress and met with nearly 400 Senators and Representatives. The goals: • To continue funding for the national ALS Registry, which may become the single largest ALS research project ever created; and It is clear that the meetings made an impact as 33 Senators signed a letter calling on the Senate to increase funding for the ALSRP to $10 million. This is the largest number of Senators who have ever signed onto our DOD funding letter, which last year led Congress to enact our request and provide $5 million for the program. The support generated this year – in just a matter of days – was greater than similar letters supporting other disease research. Why? Because advocates told the ALS story, put a face on the disease, and made a policy issue personal. After all, Members of Congress can’t forget shaking the hand of a person with ALS who no longer can return the grip. As Stephanie said, “I believe the personal visits make it impossible for our message to get lost in the shuffle.” The sense of empowerment was not only felt walking the Halls of Congress. It was present on each day of the conference – whether during the conference’s opening session where advocates from across the country announced their presence in Washington, the “Prep for the Hill” session or even the Mother’s Day BBQ where attendees had the opportunity to meet hundreds of others who share the same experiences and the same hopes in the journey toward a treatment. The Advocacy Conference included other empowering sessions in addition to Advocacy Day on the Hill. To read the entire story about the 2009 Advocacy Conference, including: the research and policy breakout sessions; the celebrities who joined us in Washington to fight ALS, like former Major League Baseball All-Star pitcher Curt Schilling; the 2009 candlelight vigil; and a moving wreath laying ceremony held at the Tomb of the Unknowns at Arlington National Cemetery, please click here. Join Us in 2010! The ALS Association encourages the entire ALS community to join us for next year’s conference, which takes place May 9-11, 2010. And please participate in The Association’s year-round advocacy efforts by signing-up to become an ALS Advocate TODAY at www.alsa.org/policy/involved.cfm. In the meantime, we invite you to share memories and view photos taken during the conference at www.alsa.org/policy/alsday.cfm.
|
2008 ALS Advocacy DayALS Association of Greater New York met with Legislators During the National Advocacy Conference in Washington D.C. On May, 2008, the ALS Association of Greater New York sought support of legislators in Washington D.C. for proposed bills establishing a national registry and appropriation of funds toward research. Also on the agenda was securing government benefits for veterans afflicted with the disease as they run a higher risk of contracting ALS, especially 1991 Gulf War service persons, according to recent studies.
Washington D.C. — From May 11th through 14th the ALS Association of Greater New York spent three days in Washington D.C. for the ALS Association’s Advocacy Day and Public Policy Conference. Advocates met with their legislators and aides in the House of Representatives and the Senate to request funding dedicated for ALS Specific programs and to encourage passing of specific legislation. The ALS Association of Greater New York is encouraging the Senate to pass the ALS Registry Act (S. 1382), which has already passed in the House (HR. 2295). The ALS Registry Act will establish a registry at the Center for Disease Control (CDC) to help identify the incidence and prevalence of ALS in the United States and collect data needed for ALS research, disease management and the development of standards of care. While projects 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. Along with the bill is a request for $5 million to continue the work already begun at the CDC.
On Oct. 16, 2007, Representative Eliot L. Engel (D - NY) introduced a companion ALS Registry bill (H.R. 2295), which passed by a 411-3 vote. The Advocates met with Representatives in the House to thank them for their support and to request that they back the appropriation of $5 million needed to continue the work at the CDC. The national patient registry will promote a better understanding of the disease and help determine causes of ALS, significantly increasing efforts to find treatment and a cure. The ALS Advocates also looked for the support of members of Congress for $5 million in additional funding to continue the Peer Reviewed ALS Research Program (ALSRP). In 2007 the Department of Defense provided $5 million to support the ALSRP, which is focuses on clinical research leading to new treatments for the disease. Recent studies supported by the DOD and the Veterans Administration (VA) linked military service to a greater risk of contracting ALS by a factor of two giving the DOD a greater stake in finding treatment and a cure for ALS.
Advocates looked specifically to members of the House to introduce legislation (H.R. 5454) that would establish ALS as a service connected disease and ensure that military veterans with ALS have access to full disability benefits through the VA. While the studies that showed 1991 Persian Gulf War veterans are twice as likely as non-military persons to contract ALS, other studies show all veterans are at an increased link to the disease. The VA has not extended service connected benefits to all veterans with ALS, leaving thousands of our vets unable to access VA benefits that they deserve.
|
