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.

It’s worth knowing who Lou Gehrig was. He was an incredible baseball player and man, who bravely faced his illness and who inspired many, many people. I personally didn’t know anything about him, beyond his name, until I was diagnosed with ALS. And I learned even more when he was celebrated this year, on and around the July 4 anniversary of his powerful speech quitting baseball after his diagnosis. He was remarkable.

The problem is, 75 years after that speech, it is his image that still graces many ALS organization websites and literature. Though his story is an important one, in an historical sense, Lou Gehrig can no longer be the face of this disease. Instead, the faces of ALS are the 30,000 people in the United States who are living with it now, the 15 more who are diagnosed every day.* Many of us were very young—in our twenties and thirties—when diagnosed. Many of us have small children. Our levels of urgency cannot be represented by old photos that lend a staleness to what is, for us, a very immediate problem.

This may sound like a semantic argument, but it’s not. Nor is it an attempt to diminish all that was great about Gehrig. Rather, it’s a necessary step to encourage further advances and help people realize why they should care about ALS now. How can we expect anyone to understand how urgent this disease is, how possible a cure is, if we use a face from the last century to tell today’s story?

Dr. Steven Finkbeiner, Associate Director of Gladstone Institute of Neurological Disease, offers a very compelling reason to care about ALS. “We genuinely believe that at least some of the processes that cause ALS also play a role in Alzheimer’s disease, Parkinson’s disease and other neurodegenerative disorders,” he explains.

Add Frontotemporal Dementia and Huntington’s Disease to that list and you have five diseases that collectively make up the fifth leading cause of death in the United States.

“While neurological diseases cause enormous suffering and exact huge emotional tolls on patients and families, the financial cost is also overwhelming,” says Dr. Lucie Bruijn, Chief Scientist for The ALS Association. “In the later stages of ALS it can easily cost more than $200,000 a year to care for a loved one.” She adds that, on a larger scale, it is estimated that the cost of dealing with Alzheimer’s Disease alone over the next four decades in the United States will be three times the national debt.

We should care.

ALS may be only the tip of the icebucket (couldn’t resist), but it is the disease that Bruijn, Finkbeiner and others are focusing on, because they can measure the decline in strength, especially related to breathing, that patients experience. And because ALS progress can be severe and rapid, Dr. Finkbeiner says, “The FDA has been willing to reduce the regulatory burden, making it easier to get to the stage where a clinical trial can be performed.”

That means advances in ALS research could impact millions of people who are suffering from neurodegenerative diseases. We should definitely care.

The bottom line is that a disease really shouldn’t be named after someone unless it’s the person who cured it. Because if it’s forever entwined with a name, then it stands to reason that it stops with that name, and that the public understanding of it might also stop with that name.

The #icebucketchallenge was an amazing start. The campaign has succeeded beyond wildest expectations: raising money, raising awareness, and taking a huge leap towards rebranding an entire disease. Because of the spotlight the ice buckets have shown on ALS, we are now seeing the potential for real movement and impact, and that’s incredibly exciting.

So let’s go forward with a clear vision of who it is we’re fighting for. It’s too late for Lou Gehrig. It’s not too late for the rest of us.

*My statistical focus here has been on the United States, because that is where I am and what I know best. In other countries, the disease is called Motor Neuron (or Neurone) Disease, or MND. I’d be just as happy if we all started calling it that. My argument here is to stop referring to one person and recognize how many people—worldwide—are affected.

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