Remember the Ice Bucket Challenge? A campaign to raise money for amyotrophic lateral sclerosis, more commonly known as ALS, the idea was to get people to dump ice water on their heads as a way to raise money. It was a sensation, and everyone and their dog was dumping water on themselves to raise money and awareness for the disease and people with it.
I remember at the time there was backlash, people claiming that the money wasn’t going anywhere, that it wouldn’t really accomplish anything, that there was no reason to do it and that it was possibly dangerous given the shock to the system that ice water could give you. The grumpy Gus brigade was very vocal about how stupid they thought the whole thing was and how angry it made them.
The grumpy Gus brigade was also proven wrong. That ice bucket cash meant there was $20 million for research into ALS in Canada, which was 10 times what was normally available – not all of the money raised went to research, some of the funds went to support people diagnosed with ALS. Those extra research dollars actually have lead to a breakthrough in research. It has found that the NEK1 gene is fundamental in the development of the disease. The ALS foundation in Canada has argued that the Ice Bucket Challenge is a big reason why this research breakthrough has happened, since the extra resources available made it possible to .
It isn’t always the case that a direct line from a viral campaign to an actual medical breakthrough can be made, but in this case it makes sense. Before the challenge, ALS was relatively obscure and didn’t get substantial funding for research. A very silly viral campaign put it on people’s radars, which lead to actual progress being made in research and development. It’s not surprising that we have finally had some breakthroughs in research surrounding the disease now that people are more aware that it exists.
It was pretty important that the ALS foundation actually released this information. Research is often fairly inscrutable to a layman and happens relatively subtly. Take the Terry Fox Run, for example. Since the fundraiser for cancer research began, we have learned significantly more about the disease and outcomes are more positive, though plainly we are not nearly at the end of the road. Still, the important change is the cancer that killed Fox himself would likely be survivable today. What changed? We learned more about cancer and how to treat it, as well as improving the technology, but it’s not like there was one big advance that saved the day, it’s just that a growing information base has meant that we know more about what we’re doing than we did in the ‘80s. People love a big major breakthrough, but in the case of cancer treatment, there really isn’t one, it’s more a bunch of very small advances that build on each other into better outcomes for patients.
In terms of ALS, it’s likely that’s going to be what actually matters to patients, that slow build of information. But to have a major breakthrough is important because now people know, it’s visible and easily explained to people who don’t understand the disease itself. It’s important as a visible landmark, even if it’s the more subtle gains in knowledge that are going to make the biggest difference for patients.
But let’s go back to the grumpy Gus brigade. They will always crow that donating to charity doesn’t do anything, they’ll go on about people making money at non-profits and they’ll frequently say that it’s all some sort of scam rather than something that actually helps people. I’m sympathetic to them, it’s often incredibly difficult to see what difference is made with your donations, and the moves in research into disease are almost always slow marches towards better treatments rather than immediate miracle breakthroughs. It can seem like you’re not getting anything out of it, and this can even be frustrating for people with the diseases which their foundation of choice is meant to research. The negative can sometimes be read as an elaborate excuse to avoid actually making a donation, but I’ve seen people who genuinely want their charity of choice to succeed begin to get disillusioned by a perceived lack of progress in research and finding a cure.
I think the important thing to remember is that research isn’t instant. These are often complicated issues that can’t be fixed by money alone, and research doesn’t always lead in the direction you want or towards the cure you think it should. But we now have a case where a big viral campaign and a pile of money has actually lead to a tangible result. It might not lead to a complete understanding of what ALS is and what it means yet, but we’re getting there, and their Ice Bucket Challenge is actually the reason why it happened. Most advances are less obvious and can only be seen in hindsight, but we’re still making a difference.
