In May, hundreds of advocates from across the country joined together in Washington, DC for The ALS Association’s 2010 National ALS Advocacy Day and Public Policy Conference. The conference is part of a year-round strategic effort by The ALS Association to improve patient care, advance research and empower people with ALS. By leveraging the resources of the federal government, which is the single largest source of ALS research funding and patient services in the world, the Advocacy Conference is creating the Roadmap that will lead to a cure.
And whether you were a first time attendee or a conference veteran, everyone who attended quickly realized that:
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 together they can make a difference. And make a difference is just what advocates did as they flooded the Hall of Congress to tell the ALS story and continue the roadmap to a cure. This year’s goals:
Research and Policy Breakout Sessions
Prior to the Hill visits advocates heard about the progress towards a treatment that have been made possible by advocacy, including:
Breakout sessions also delivered more information to attendees about veterans benefits The Association helped secure in 2008 for military veterans with ALS; Congressional funding for respite care; and the promising therapies in clinical trials. Sessions focused on clinical care included the latest advances in respiratory care and brain computer interface technologies. And for the fourth consecutive year, The Association held a breakout session designed to help children and families become involved in advocacy efforts. Congressional Leaders, Advocates Honored in the Fight Against ALS At the Celebration of Excellence Breakfast, advocates were joined by two United States Senators who have helped lead the fight against ALS on Capitol Hill. Senator Bob Casey (DPA) was awarded the Henry A. Wallace Award for championing funding for the ALS Research Program at the Department of Defense. And Senator Lisa Murkowski (R‐AK) was on hand to honor her cousin Jenny Dwyer from Washington State who received the Advocate of the Year Award for her efforts to help pass the ALS Registry Act and support her husband Pat who is living with ALS.
ALS Association Pays Tribute to Those Lost to ALS
While the focus of the conference was to advance ALS public policy and empower the ALS community, the annual Candlelight Vigil reminded attendees why we come together in Washington each year.
Held at Freedom Plaza, located on Pennsylvania Avenue just blocks from the White House and with the U.S. Capitol Building in the background, the vigil was hosted by actress Kate Linder, star of the top daytime television drama, The Young and the Restless. With wonderful musical interludes delivered by Washington, DC’s Duke Ellington School for the Arts Choir, several advocates shared memories of their loved ones who have been lost to the disease and paid tribute to all of those still fighting. Speakers included: Ken McGunagle from Rhode Island who lost his father to ALS; Kathy Holt from Washington State whose best friend Mark Reiman sang the National Anthem at every Major League Baseball park before succumbing to the disease; and 13 year old Andy Snyder of West Virginia whose memories of his grandmother Lynne brought tears and smiles to the faces of all in attendance. Indeed, the vigil provided attendees with renewed purpose and once again signaled that The ALS Association is lighting the way for a treatment and cure.
For the hundreds of advocates who joined together in Washington, the 2010 Advocacy Conference was an event to remember. And it was an event that made a difference in creating the roadmap that will lead to a treatment and cure for ALS.