By Lisa Respers France, CNN
(CNN) — Eric Dane is out there fighting for others after being diagnosed with amyotrophic lateral sclerosis in April.
The “Euphoria” star traveled to Washington, DC, this week before the government shutdown with the nonprofit I AM ALS, to advocate for further research and assistance in neurodegenerative diseases
The Accelerating Access to Critical Therapies for ALS Act was passed in 2021. It provided five years of funding for research and also allowed early access to treatments for ALS, also known as Lou Gehrig’s disease. The legislation will expire in 2026.
Dane met with US House of Representatives member Eric Swalwell of California, where he said the specifics of ALS make it “the last thing they want to diagnose anybody with.”
“So often, it takes all this time for these people to be diagnosed. Well, then it precludes them from being a part of these clinical trials,” the actor, who also starred on “Grey’s Anatomy,” said. “That’s why ACT for ALS is so, so great, and it’s because it broadens the access for everybody.”
Expanded access to drugs — allowing patients access to medications before they have been vetted to the highest regulatory standards — became mainstream during the HIV epidemic, as health activists pressed the FDA and other bodies for streamlined and expedited access.
Dane also talked about his hope for the future.
“I have two daughters at home. I want to see them, you know, graduate college, and get married and maybe have grandkids,” Dane said. “You know, I want to be there for all that. So I’m going to fight to the last breath on this one.”
He has been married to actress Rebecca Gayheart since 2004 and they share daughters: Billie, born in 2010, and Georgia, born in 2011.
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