Actor Eric Dane’s death from ALS sparks urgent focus on rapid decline
“It’s a muscle weakness disease — affecting nerves that innervate muscles — and usually it starts on one side,” the doctor shared. “Then you develop fatigue … You could see a quivering tongue or your arm is quivering, usually one side and then the other side.”
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As the weakness progresses, it impacts speech and ultimately attacks the diaphragm, making it difficult to fully inflate the lungs.
“That’s what happened to [Dane], most likely,” Siegel said. “So, it progresses from your arms, your legs, your speech, your swallowing ability and then your breathing.”
Rising research
ALS progresses “pretty rapidly in most cases,” Siegel said. While scientist Stephen Hawking lived 55 years with the disease, Dane “probably lived about two years with it,” the doctor surmised.
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“I want to point out how courageous [Dane] is — he actually was involved with Target ALS, where he was fighting for new research,” Siegel pointed out. “We’re learning to personalize the approach to this disease, and that’s the future — and he fought for that.”
Actor Eric Dane is photographed at the St. Regis in Washington, D.C., on Sept. 30, 2025. “I want to point out how courageous [Dane],” said Dr. Marc Siegel. (Marvin Joseph/The Washington Post via Getty Images)
“We need a lot of money for research for this — [Dane] was asking for a billion dollars from the government.”
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Various research groups and hospital systems are actively working on new ALS therapies that take a personalized approach, Siegel shared.
The estimated cost to develop a drug that would slow or stop disease progression is $2 billion, the ALS Association has reported. The annual estimated out-of-picket cost for care is $250,000.
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Funding for ALS research and awareness has been on the rise for years, with the viral social media ALS Ice Bucket Challenge making a splash in 2014.
The challenge, supported by the ALS Association, was intended to boost awareness. It ultimately raised $115 million toward ALS research and patient care.
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