This week, we joined over 50 advocates in Washington, DC at the “More Than Our Stories” conference to discuss priorities for 2025, focusing on research investment, quality of care, and support for those living with ALS and their caregivers. Our top priority was securing funding for ALS research. We’ve made progress in funding and infrastructure, but the underlying cause of ALS remains unclear, and continued investment and release of payments to researchers are crucial to find safe and effective treatments. Sen. Lisa Murkowski and Kody Keckler, Legislative Assistant for Rep. Mike Quigley also joined us. They have been long time champions for the ALS community.
Lauren Webb, Chief Advocacy and Outreach Officer and Andrea Pauls Backman, former CEO of the Foundation and fellow advocate teamed up to talk with the offices of Sen. Tammy Duckworth, Rep. Brad Schneider, and Rep. Jan Schakowsky about ways to support veterans, improve access to multidisciplinary care, support caregivers, protect access to Medicaid, and support research.
“It was so important to be on the Hill during the change of administration, meeting with fellow advocates and legislative staff to figure out how we can work together to support our community,” said Webb. “We’ve got a lot of work ahead, but the passion and energy of those impacted by ALS will keep us pushing forward to make sure our community’s needs are met.”
The Les Turner ALS Foundation is committed to securing access to care, new treatments, and services, as well as improving the quality of life for people living with ALS. Your story and advocacy can help create progress for those living with ALS today and in the future. Please email advocacy@lesturnerals.org to get involved.
