As he manages his own amyotrophic lateral sclerosis, actor Eric Dane is also advocating for the continuation of the Accelerating Access to Critical Therapies for ALS Act, which is set to expire in 2026.
The actor, along with the nonprofit organization I AM ALS, spoke with U.S. Rep. Eric Swalwell (D-Dublin) on Tuesday about the importance of the legislation, which provides funding for research and gives patients early access to treatments.
“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,” Dane told Swalwell. “That’s why ACT for ALS is so, so great, and it’s because it broadens the access for everybody.”
It took Dane nine months before he was diagnosed with ALS, also known as Lou Gehrig’s disease. He announced his diagnosis in April.
Since then, the “Euphoria” actor has changed his approach to fighting his condition.
During an interview with “Good Morning America” in June, Dane expressed anger at the thought of being taken from his two young daughters. He said he was mad that history might repeat itself, as his father died when the “Grey’s Anatomy” alumnus was 7.
Months later, his frustration has turned into a fight to see his daughters’ lives play out.
“I want to see [my daughters], 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.”
In the video posted on TikTok by the representative, Dane speaks with a slight slur but his words echo his fight to live on.
About 5,000 people are newly diagnosed with ALS each year in the U.S., according to the National ALS Registry. It affects the nerve cells in the brain that control movement, which eventually leads to the loss of the ability to speak, move, swallow and breathe.
Times staff writers Christie D’Zurilla and Kaitlyn Huamani contributed to this report.
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