Whether joining us in Washington, D.C. for the 2016 National ALS Advocacy Day & Public Policy Conference or participating online, ALS advocates once again proved the power of their stories in influencing legislators and making a difference in the fight against ALS on Capitol Hill.
From May 8-10, the power of those stories was on full display, and we’d like to offer a sincere thank you to all the advocates who participated in this year’s Conference and made their voices heard in support of the ALS community.
This year’s Conference saw over 1,000 people joining us in Washington, D.C., including 128 people living with the disease. Those advocates participated in over 500 meetings with Members of Congress and their staff on National ALS Advocacy Day, each meeting an opportunity to tell their stories and urge legislators to act on behalf of the ALS community, specifically by waiving the 5-month waiting period for Social Security Disability benefits for people with ALS, enacting the Dormant Therapies Act, and ensuring access to complex rehab technologies.
- Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced legislation in the Senate (S. 2904) to waive the five-month waiting period for Social Security Disability benefits for people living with ALS. In the House of Representatives, Congressmen Seth Moulton (D-MA) and Peter King (R-NY) introduced identical legislation (H.R. 5183). You can tell your Members to support this legislation here!
- Congressman Leonard Lance (R-NJ) hosted a press conference to build support for the Dormant Therapies Act on Tuesday, May 10. ALS advocate Nirali Shah, CEO of The Association, Barb Newhouse, Chair of The Association’s Public Policy Committee, Chris Brussalis, and CEO of the National Health Council, Marc Boutin also spoke at the event to highlight the role the Dormant Therapies Act will play in accelerating the search for a treatment for ALS.
- ALS advocate Lorri Carey was highlighted in a Medicines in Development report released in partnership with The ALS Association and PhRMA. The report detailed the promising treatments in the pipeline for rare diseases, such as 38 for neurological diseases, including ALS. Lorri also participated in Targeted Cures, a panel discussion hosted by The Hill that discussed treating patients with rare diseases and also featured Congressman Fred Upton (R-MI) and Senator Bob Casey (D-PA).
- #ALSAdvocacyDay was trending on Twitter in Washington, D.C. on National ALS Advocacy Day!
With results like these, it’s clear your efforts are making a tremendous difference!
2016 Award Winners
During the Conference, The ALS Association presented awards and honored some of our many heroes in the ALS community, including:
- Rasmussen Advocate of the Year
- Lorri Carey (person with ALS from The ALS Association Central & Southern Ohio Chapter)
- Outstanding Advocacy Efforts
- Cindy Dyle (caregiver from The ALS Association Lousiana-Mississippi Chapter)
- Pat O'Conner (president of Minor League Baseball)
- Certificates of Appreciation for "Strike Out ALS" Program with Minor League Baseball
- Certificates of Appreciation for Chapters with Outstanding Federal Advocacy Efforts
Archived Conference Report and Photographs: