ALS treatment advocacy

Despite the devastating diagnosis, Dane has vowed to keep fighting. Recently he traveled to Washington, D.C., advocating for more research and support for neurodegenerative diseases, CNN reports.

While meeting with U.S. Representative Eric Swalwell of California, Dane – slurring his speech – described ALS as “the last thing they want to diagnose anybody with,” underscoring the devastating reality of the disease.

Dane’s appearance in Washington also drew attention to the Accelerating Access to Critical Therapies for ALS Act, which was signed into law in 2021. The act provided five years of funding for ALS research and granted patients earlier access to treatments. Unless renewed, that legislation will expire in 2026, underscoring the urgency of his advocacy.

“I’m going to ring every bell..I have two daughters at home. I want to see them, you know, graduate college, and get married and maybe have grandkids,” Dane told Swalwell. “You know, I want to be there for all that. So, I’m going to fight to the last breath on this one.”