Key Takeaways on ALS, or Stephen Hawking’s Condition:
ALS stands for amyotrophic lateral sclerosis and is also known as Lou Gehrig’s disease.
Stephen Hawking lived with ALS for 55 years and advocated for research and helped bring awareness to the disease.
ALS is fatal, and impacts a person’s ability to talk, eat, walk, and breath. Progress for treatment includes a genetic treatment, Qalsody, that was approved by the Federal Drug Administration (FDA) in 2023.
In 1939, Lou Gehrig, the first baseman for the New York Yankees, shocked the baseball world when he benched himself mid-season after playing 2,130 consecutive games. Though he’d had a stellar season the year prior, something was different. He didn’t know it quite yet, but he was beginning to experience the symptoms of amyotrophic lateral sclerosis (ALS). Doctors diagnosed Gherig on his 36th birthday, and he passed away just before his 38th.
Renowned physicist Stephen Hawking was diagnosed with ALS (also known as Lou Gehrig’s disease) in 1963. However, doctors were still unsure what caused the disease and if there were any possible treatments. Hawking’s doctors gave him about two years to live, however, he lived with the disease for 55 years.
During his life and career, Hawking was an advocate for ALS research and helped bring awareness to the disease. With his outreach and the help of viral challenges like the Ice Bucket Challenge in 2014, scientists have identified many new genes associated with ALS. There is hope that scientists will one day combat the disease with targeted gene therapies.
What Is ALS?
Schematic illustration of the neuron affected by amyotrophic lateral sclerosis disease, or ALS, a progressive disease of the nervous system that causes loss of muscle control. (Image Credit: ilusmedical/Shutterstock)
When Gehrig announced his retirement, many people learned about ALS for the first time. But scientists a century earlier were making note of a progressive weakness they thought was rooted in a neurogenic cause. Now, researchers better understand the cause of the disease as well as the expected progression.
“ALS is a fatal disease where a person’s brain stops communicating with their muscles. This means a person loses the ability to walk, talk, eat, and eventually breathe. It takes a devastating toll on entire families — physically, emotionally, and financially,” says Brian Frederick, the Chief Marketing and Communications Officer for The ALS Association.
Stephen Hawking’s Condition: The Longest Survivor of ALS
ALS is a rare disease, and only in the past few years did the Centers for Disease Control and Prevention (CDC) create a registry that officially tracked ALS prevalence in the U.S. In 2022, almost 33,000 cases were reported.
Including Gehrig, there have been a few famous people with ALS. World-renowned physicist Stephen Hawking lived with ALS for 55 years. He was diagnosed at age 21 and lived with the disease until 2018. Hawking was the longest living person living with ALS, and the average survival time after diagnosis is three years.
“ALS is always fatal, usually within two to five years of diagnosis. There are some individuals who live much longer with ALS, but we don’t know why yet,” Frederick says.
Read More: From Thoughts To Words: How AI Deciphers Neural Signals To Help A Man With ALS speak
Advances in ALS Research and Treatment
Superoxide dismutase 1 (SOD1) enzyme. Converts superoxide radical in hydrogen peroxide. Gene mutations cause ALS (amyotrophic lateral sclerosis). (Image Credit: StudioMolekuul/Shutterstock)
For people living with ALS, the progression of the disease can vary. ALS affects motor neurons and creates paralysis in a person’s legs and arms. They will also lose control over the muscles that allow them to speak, swallow, and breathe. For some people, the paralysis may begin in their legs. For others, it can start with their voice.
“We have seen several new ALS genes identified, which gives the research community targets for potential therapies,” Frederick says.
Researchers were able to develop a targeted therapy for one of the identified genes, the superoxide dismutase 1 (SOD1) gene. A genetic treatment, Qalsody, was approved by the Federal Drug Administration (FDA) in 2023 and then by regulating agencies in the European Union in 2024.
Although the introduction of Qalsody is seen as progress, it can only treat patients with the mutation in the SOD1 gene. Currently, the CDC estimates there are fewer than 500 patients in the U.S. who have this type of mutation and will benefit from the new drug.
In 1993, SOD1 was the first gene associated with ALS. By the time of the 2014 Ice Bucket Challenge, more than 20 associated genes were known to scientists. Now, more than 40 genes have been identified, which will help scientists work toward target treatments.
Hope for an ALS Cure
Although progress is being made, there is currently no cure for ALS, and advocates hope another surge in public interest could help fund further studies.
“Anyone can get ALS at any time, and it’s a brutal disease. People who are diagnosed and their families often express that they prayed for cancer or MS or anything other than ALS before that final diagnosis,” Frederick says.
This article is not offering medical advice and should be used for informational purposes only.
Read More: A Soft Ventilator Could Help People with ALS Breathe Easier
Article Sources
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Emilie Lucchesi has written for some of the country’s largest newspapers, including The New York Times, Chicago Tribune and Los Angeles Times. She holds a bachelor’s degree in journalism from the University of Missouri and an MA from DePaul University. She also holds a Ph.D. in communication from the University of Illinois-Chicago with an emphasis on media framing, message construction and stigma communication. Emilie has authored three nonfiction books. Her third, A Light in the Dark: Surviving More Than Ted Bundy, releases October 3, 2023, from Chicago Review Press and is co-authored with survivor Kathy Kleiner Rubin.
