Overview
- Dane appears in a newly publicized clip urging Congress to reauthorize and fully fund ACT for ALS, warning patients could lose access to investigational therapies without it.
- ACT for ALS, a federal program created in 2021 to speed research and expand treatment access, was reintroduced in the House this week with an eye toward extending it through 2031.
- The short film Ring Every Bell, produced with I AM ALS, is set for a Washington, D.C. screening on May 6 during the group’s annual flag gathering for ALS Awareness Month.
- The documentary shows Dane’s 2025 Capitol Hill meetings with Senator Lisa Murkowski and Representative Morgan Griffith alongside fellow patient advocate Dan Tate Jr.
- Before his Feb. 19 death, Dane joined I AM ALS’s Push for Progress campaign seeking $1 billion over three years to accelerate research and widen treatment access.