Valued Voice

Every May, people come together to raise awareness and spread education about Amyotrophic Lateral Sclerosis, more commonly referred to as ALS. The ALS Association defines the disease as “a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.” This means that slowly over time, people diagnosed lose connection to their muscles, which removes their ability to walk, eat, talk and eventually breathe. Currently there is no cure for ALS, though lots of research and awareness are brought to the disease.

The ALS Association states that roughly 5,000 individuals are diagnosed with ALS each year, and there are about 30,000 currently diagnosed. The average life expectancy after being diagnosed with the disease is roughly two to five years. Every 90 minutes, someone diagnosed with ALS passes away from the disease and another is diagnosed (ALS Association, 2023).

The WHA Information Center analyzed claims from Jan. 2019 to Dec. 2022. The claims data showed that men had higher visit counts than women, but not by much. Nationally, ALS is 20% more commonly diagnosed in men than in women. That percentage, however, does tend to even out as age increases (ALS Association, 2023).

The age group that had the highest visit count was age 61-70 years old. The ALS Association wrote that “most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis.” There are cases, though rare, when people in their 20s and 30s can be diagnosed. The average age of patients visiting for ALS from the WHA data was 64 years old.

Below are some notable public figures who had been or currently are diagnosed with ALS:

• Lou Gehrig – beloved baseball player
• Steven Hawking – theoretical physicist, cosmologist and author
• Jon Stone – Sesame Street creator
• Jim Hunter – Hall of Fame baseball pitcher
• Stephen Hillenburg – SpongeBob SquarePants creator
• Mike Porcaro – bassist for the band Toto