It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>