Where’s the real change since the ice bucket challenge for ALS?

Lately I’ve seen people on my social media feed dumping ice water over their heads to promote awareness of mental health, which took me back in time to the ALS ice bucket challenge in 2014.

That viral sensation may have been the most effective tool for raising awareness for the rare disease since Lou Gehrig, the New York Yankee, announced his retirement from the game in 1939, following his diagnosis. For decades after, in fact, ALS was commonly known as Lou Gehrig’s disease.

By the time my husband, Todd, was diagnosed in 2010, few people under the age of 50 were familiar with Gehrig or his disease. But since 2014, when I tell people that my husband has ALS, they often reply, “Oh, like the ice bucket challenge?”

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Some people in the ALS community are disappointed that this year’s ice bucket challenge has been for a cause other than ALS. But in fairness, the original ice bucket challenge encouraged donations for whatever charity — such as childhood cancer — was on the heart of the person accepting the challenge. Along the way it was popularized by people specifically naming ALS, and it took off after Pat Quinn and Pete Frates, who both had ALS and large social networks, began promoting it.

The ALS ice bucket challenge raised awareness of the disease and millions of dollars for research, and although Quinn and Frates have since died from it, their legacies continue through their respective foundations.

Making news from home

When the ALS ice bucket challenge went viral, Todd and I had just published our memoir, “Heavy,” about our first year living with the disease. Soon after, a TV6 & FOX UP news crew for Marquette, Michigan, arrived at our home to interview us about the book and the ice bucket challenge.

In the video, our kids are little, and Todd reads a book to them, fumbling to turn pages with his weak hands. But he still has enough strength to drive his wheelchair with the joystick control, and he’s able to pet our dog, Comet. The video also captures Todd with a strong voice and looking healthy. I’d prepped buckets of ice water, and the kids and I are seen dumping it on ourselves.

Todd talks about how he didn’t believe his diagnosis at first and about the struggles of dealing with disease progression. He reveals his difficulty giving up driving and becoming a passenger only.

At the conclusion of the video, Todd says, “Soon enough your news feed will go back to cat videos and covers of ‘Let It Go,’ but right now ALS has the spotlight, and I think what’s wonderful about that is somewhere in there, somebody’s heart will be changed.”

He was right. The internet moved on.

Times have changed — and yet, not enough

Now, a decade later, I’m struck by how much has changed. Our kids grew up. Comet is an old dog. Todd’s voice is much weaker and often nasal as he speaks while wearing his noninvasive ventilator. And he has no use of his hands.

I’m also struck with how much hasn’t changed. So much money was raised because of the ALS ice bucket challenge, but we still don’t have effective treatments for the disease. And those living with ALS in the United States, and in many less wealthy countries, still don’t get enough assistance for home care.

Money and awareness only go so far. We need change. Tackling the real problems of ALS demands sustained effort, policy reform, scientific breakthroughs, and a healthcare system that meets the needs of the most vulnerable.

I’m encouraged by the push for research, but with a disease that’s so poorly understood, we don’t know how long it’ll take to find a cure. But one thing we could know, if there were the political will to do so, is a way to provide caregiving support through our healthcare system so families aren’t left to struggle largely on their own.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.