When The ALS Association convened the first annual National ALS Advocacy Day over 15 years ago, a few hundred advocates made the trip to Washington, DC to meet with Members of Congress. During this year’s conference, held May 7-9, more than 1,000 participated, including over 130 people with ALS, both conference records! Most of those attending were participating for the first time and, like those who have participated in the past, they made a difference on Capitol Hill, putting a face on the disease and building support for our cause in the halls of Congress.
Advocates held over 500 meetings with Members of Congress and their staff! Those meetings educated Congressional offices about the disease and built support for policies that not only would advance the search for the cause and treatment of ALS, but also ensure that those with ALS have access to the care and technology they need to continue to live their lives as they fight the disease.
In addition to participating in Advocacy Day on the Hill, conference attendees learned the latest news about government ALS research programs such as the ALS Research Program (ALSRP) at the Department of Defense and the National ALS Registry, which expects to release its first data set later in June, 2014. Attendees also learned about The Association’s TREAT ALS research program and about innovative clinical trials during research sessions that included Dr. Merit Cudkowicz, representatives from Cytokinetics and The Association’s Chief Scientist, Dr. Lucie Bruijn.
During the conference luncheon on May 9, The Association recognized a number of individuals for their outstanding advocacy efforts and presented the Rasmussen Advocate of the Year Award. The luncheon also featured a guest speaker, Jan Scheuermann, who is totally paralyzed, but who is participating in groundbreaking research that enables her to control a robotic arm through the use of brain-computer interface technology. And finally, conference participants enjoyed a the first ever ALSA Expo, which provided them with the opportunity to visit and speak one-on-one with ALS researchers, including scientists from the NIH, as well as with experts on veterans benefits, financial planning, and assistive technology among others.
By all accounts, the 2014 conference was a tremendous success! Additional details about the conference are below. You also can view and download photographs taken during the conference, here: http://kevinallenphoto.photoshelter.com/gallery/ALS-Advocacy-Day-2014/G0000sC.uYxlkskM (password: kap). Please note that photos will be available for a limited time, until September 1, 2014. Videos of conference sessions also are available for viewing on our YouTube channel, https://www.youtube.com/user/thealsassociation.
Thank you to everyone who participated in the 2014 conference in person and online. You are making a difference!
Video of the Government ALS Research Session is available here: http://bit.ly/1m8yZ5u.
The 2014 conference began with presentations about the ALS Research Program (ALSRP) at the Department of Defense and the National ALS Registry. Dr. Nicholas Maragakis from Johns Hopkins University provided an update about his research, funded by the ALSRP, that is examining the use of induced pluripotent stem cells (iPSC) as a treatment for ALS. Dr. Maragakis also shared news about other current research and clinical trials examining the use of stems cells in ALS.
Dr. Kevin Horton of the Agency for Toxic Substances and Disease Registry (ATSDR), which manages the National ALS Registry, shared with attendees the latest news about the Registry including that ATSDR plans to publish the Registry’s first data set in June 2014 through the CDC’s publication, the Morbidity and Mortality Weekly Report (MMWR). The data set is expected to include information about the incidence and prevalence of ALS and demographic information such as impact of the disease by age, race and gender. While Dr. Horton announced the upcoming data release he also shared other exciting news including:
Dr. Horton also shared results from the 11 state and metropolitan area ALS surveillance studies that were conducted across the country as well as an update on efforts to add a biorepository to the registry that would link samples such as blood, skin, brain and spinal cord with environmental risk factors.
The most important part of the three-day conference is the day on Capitol Hill when advocates meet with their elected officials, share the ALS story and urge Congress to support the fight against the disease. And that’s exactly what more than 1,000 ALS advocates did as they flooded the halls of Congress and held over 500 meetings with Members of Congress and their staff. In addition to educating Congress about ALS, the meetings focused on advancing four priority issues:
Judging by the feedback reported from the meetings and by the response and action taken by Members of Congress, the meetings had a significant impact. For example, more than 200 Members of Congress said they would help us ensure access to SGDs! And we increased cosponsors of the MODDERN Cures Act by nearly 30%!
While Advocacy Day on the Hill produced results on the four issues discussed in the meetings, during the conference’s “Prep for the Hill” session held the previous day, The Association’s Public Policy Department emphasized the need for the ALS community to advocate through the year, including locally not just one day in Washington, DC. Importantly, the Department also shared that The Association works on a wide range of nearly 50 different issues, from FDA regulations to funding for NIH and coverage for therapy services, in addition to the four priorities that were the subject of the Advocacy Day meetings.
The conference included several presentations to update the ALS community about The Association’s TREAT ALS program as well as the latest ALS clinical trials. Brief summaries of those sessions are below as are links to videos of the presentations.
TREAT ALS: Video available here: http://bit.ly/1tFw2NR
ALS Clinical Trials: Video available here: http://bit.ly/1l3EHZE
During the conference, The ALS Association presented the Rasmussen Advocate of the Year Award and also recognized several ALS Association Chapter staff and volunteers for their outstanding efforts to advance ALS public policy throughout the year. This year’s Rasmussen Advocates of the Year were Karen Carlsen from Oklahoma and Ken McGunagle from the Rhode Island Chapter.
Karen Carlsen’s efforts to advance the fight against ALS have been truly remarkable and an inspiration. She traveled to visit every single member of her Congressional delegation, not just in Washington, but in their districts back in her home state of Oklahoma. She has promoted the National ALS Registry throughout the state, provided assistance and encouragement to people with ALS and their families, and recruited more and more people to play an active role in public policy and advocacy efforts. And she has done all of this while fighting ALS and without an ALS Association chapter in her state.
Ken has played an active role in public policy and ALS advocacy since 1991 when he lost his father to the disease. He helped to establish the first ALS multidisciplinary clinic in Rhode Island, secured The Association’s first legislative grant ever received by an Association Chapter from a state legislature, and has played key roles in advancing both the National ALS Registry and the MODDERN Cures Act.
While Ken and Karen received the Advocate of the Year Award, The Association also recognized several others for their tireless efforts to advance the cause throughout the year. They include:
Outstanding Advocacy Efforts:
Certificates of Appreciation:
The 2014 conference featured an exciting new program, called the ALSA Expo, which provided attendees with new opportunities to interact with each other and learn about a wide range of different ALS topics and technologies. Much like a traditional trade show, the Expo included a research pavilion where attendees could speak one-on-one with scientists from NIH, The Association’s Chief Scientist Lucie Bruijn, and ALS researchers supported by The Association’s Milton Safenowitz Post-Doctoral Fellowship. In fact, one of the research fellows was so moved by her interaction with patients and families during the Expo that she said it was “an experience I will never forget and [it] has provided renewed motivation for my research projects.”
The Expo also featured exhibits where attendees could obtain information about veterans’ benefits, financial planning, familial ALS, resources for children, power wheelchairs, speech generating devices, and much, much more. However, best of all attendees could relax and share their experiences, stories and hopes with fellow advocates.
Mark your calendars to attend the 2015 National ALS Advocacy Day and Public Policy Conference, which will be held at the JW Marriott Hotel in Washington, DC, May 10-12, 2015.