The recent death of actor Eric Dane has once again pushed the medical condition amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease into the global spotlight. The illness is still not widely understood, but over the years several well-known names from science, sports, music and films have spoken openly about living with it, bringing attention to its effects and the need for more research.
ALS is a progressive disease that damages the nerves controlling muscle movement, gradually making it harder to move, speak, eat and breathe. Treatments can slow its course and ease symptoms, but there is still no cure.
The illness is widely known as Lou Gehrig's disease because of the legendary American baseball player who brought it into public view. In 1939, at the height of his career, Gehrig revealed his diagnosis and delivered an emotional farewell speech. He died two years later, but his story ensured the disease would never again remain in the shadows.
In recent years, Dane became one of the most recognised faces associated with ALS. The Grey's Anatomy and Euphoria actor announced his diagnosis in 2025 and spoke about continuing to work while relying on the support of his family. His death in February 2026 at the age of 53 sparked fresh conversations about how the disease affects patients and their loved ones.
Stephen Hawking remains the most recognised figure to have lived with ALS. Diagnosed at just 21 and initially told he might not survive long, he went on to live for decades, continuing his pathbreaking work in physics, publishing bestselling books and inspiring millions with his perseverance in the face of the disease.
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Music has also seen several powerful voices touched by the disease. Roberta Flack, the Grammy-winning voice behind timeless songs like Killing Me Softly, was forced to retire from live performances after ALS took away her ability to sing. Mike Porcaro of the band Toto retired after losing the strength to play bass. Kim Shattuck of the punk band The Muffs stayed in the studio and continued creating music almost until her final days.
In film and television, actor Kenneth Mitchell chose to keep working after his diagnosis, incorporating his wheelchair into his role in Star Trek: Discovery. SpongeBob SquarePants creator Stephen Hillenburg continued his creative work after sharing news of his illness, leaving behind one of the most influential animated legacies.
Sport has played a major role in raising awareness. Former baseball player Pete Frates helped make the Ice Bucket Challenge a worldwide movement, raising millions for research. Ex-NFL player Steve Gleason has become one of the strongest advocates for patients, working to improve support systems and fund medical studies. Baseball Hall of Fame pitcher Catfish Hunter also battled ALS in the public eye.
There are many well-known personalities who are living with the disease today and documenting their journeys. Sports journalist Sarah Langs has continued to work and even completed marathons after her diagnosis, while digital creator Brooke Eby uses social media to show the day-to-day reality of life with ALS. Musician John Driskell Hopkins continues to perform and has launched an initiative to fund research.
Some lived with the condition for decades, others for only a few years. But together they have changed how the world sees ALS. By choosing to talk about it openly, they helped the world understand the disease better and kept the hope for a cure alive.
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