Think back to the summer of 2014 — you couldn't scroll through Facebook without seeing someone mention the "Ice Bucket Challenge." The viral stunt raised $115 million for the ALS Association, and most of that money has been committed to research. But today, people are talking about ALS for a different reason: Theoretical physicist Stephen Hawking died Tuesday night after living with ALS for almost 50 years. He was 76. What is amyotrophic lateral sclerosis (ALS)? It's a neurological disease that causes nerve cells to die gradually, which can lead to paralysis, breathing issues and speaking problems. Doctors don't know what causes the condition, and there is no known cure, according to Mayo Clinic.
The degenerative disease is also called Lou Gehrig's disease — per the ALS Association, the Hall of Fame baseball player is credited with bringing international attention to the condition after his 1939 diagnosis.
After receiving the diagnosis in his early 20s, Hawking was reportedly told he'd only live two to five years. Hawking's family released a statement about his death to the BBC.
We are deeply saddened that our beloved father passed away today. He was a great scientist and an extraordinary man whose work and legacy will live on for many years. His courage and persistence with his brilliance and humour inspired people across the world.
“He once said: ‘It would not be much of a universe if it wasn’t home to the people you love.’ We will miss him for ever.”
Hawking's scientific discoveries brought attention to his life with ALS, but more than 5,600 people are diagnosed with the condition annually, and the ALS Association estimates that 30,000 Americans have the condition. Only about 1 in 5 patients are alive five years post-diagnosis. But unfortunately, most of the factors that could cause the condition are out of your control. Researchers theorize that genetic variations could increase risk, along with getting older and inheriting the disease from your parents if either of them has it.
The Mayo Clinic does say other factors could increase your risk, like smoking, exposure to environmental pollutants and military service, although scientists don't know why ALS is more common in service members. Like many ALS patients, Hawking used speech software and a wheelchair in his daily life. Because ALS starts with a weak feeling in the limbs and eventually progresses to every muscle, these technologies make it easier for people with ALS to communicate with the world. According to the Washington Post, the condition is fatal because it eventually weakens the muscles we need to breathe.
While living with ALS, Hawking published best-selling books on the origin of the universe, received the Medal of Freedom from President Barack Obama and even floated in zero gravity with the help of NASA. Former NFL player Steve Gleason, who was diagnosed with ALS in 2011, said on Twitter that Hawking set an example for him.
Until an ALS cure is discovered, the condition will continue to be a devastating one that causes a frighteningly quick death. The ALS Association has 150 laboratories worldwide with scientists working on finding a cure for the condition. The nonprofit organization also funds clinical trials for people who have already been diagnosed in hopes of slowing down the disease.
Hawking shows that an ALS diagnosis isn't a barrier to having an enriching life, but living for nearly 50 years with the condition is a rarity. Unfortunately, the majority of patients die relatively soon after the condition is detected, which is why research is so important. The "Ice Bucket Challenge" is a thing of the past, but I'm moved to find a way to help after learning more about the condition and all that it entails.
To find out more about the ALS Association, click here.