Each spring, hundreds of ALS Advocates from across the U.S. unite in Washington, D.C., to learn about the latest ALS research, network with each other, and visit Capitol Hill to share their stories with members of Congress and advocate for research and access to care.
Taking place May 13-15, at the J.W. Marriott in Washington, D.C., the 2018 National ALS Advocacy Conference will focus on The ALS Association mission pillars – Advocacy, Care Services, and Research. After a day and a half of education sessions, ALS Advocates will head to Capitol Hill on Tuesday, May 15 to make specific action requests of their Senators and Representatives.
You can register to attend this year’s National ALS Advocacy Conference here.
In addition to the recent passage of the Steve Gleason Enduring Voices Act, 2018 has already proven to be a busy year for ALS advocacy. The ALS Association remains laser-focused on passing the ALS Disability Insurance Access Act, which would eliminate the five-month waiting period people with ALS must endure before accessing Social Security Disability Insurance (SSDI) or Medicare benefits.
Additionally, the Association is working to ensure $10 million in continued FY2019 funding for the National ALS Registry at the Centers for Disease Control and Prevention (CDC) and the Amyotrophic Lateral Sclerosis Research Program (ALSRP) at the Department of Defense (DoD).
ALS Advocates include people living with ALS and their families, friends, and caregivers; doctors and researchers focused on helping people with ALS and finding treatments and a cure for the disease; and volunteer leaders from The ALS Association.
“Personal stories, delivered first-hand, are very powerful tools,” says Calaneet Balas, president and CEO of The ALS Association. “The passionate stories our ALS Advocates share with members of Congress at this year’s National ALS Advocacy Conference will, undoubtedly, result in more ALS-related legislative victories.”
In 2017, more than 600 ALS Advocates, including 130 people living with ALS, took part in the National ALS Advocacy Conference. Participants completed more than 400 congressional visits, including 20 with senators and more than 40 with representatives from the House.
Won’t you join us in Washington, D.C. in May to help make a difference for people living with ALS? Get more information and register here.