This guest post is from Barbara Newhouse, Past President and CEO of the ALS Association and was originally published to the DonorDrive Blog.
Many people are under the impression that some great marketing guru came up with the Ice Bucket Challenge. That’s not true. It started with three young men, all in their thirties—and all with ALS. They harnessed the idea of dumping cold water on one’s head, not so much as a fundraiser, but as an awareness campaign. Anthony Senerchia, Pete Frates and Patrick Quinn wanted to give a face to ALS. They wanted people to know that it’s ALS and not Lou Gehrig’s Disease. They saw an issue with the perception of the disease: If you think of Lou Gehrig, you think of someone older. They wanted to use something they knew, which was sports, and something that happened often in a successful win, dumping ice, to bring awareness to ALS.
Worldwide, the Ice Bucket Challenge raised about $220 million in 2014. Of that, $115 million was raised in six weeks by the ALS Association. The reason the ALS Association garnered more than half of those dollars worldwide was that we responded to what was happening. We took what the guys were doing and engaged with our supporters to keep them posted every single day, showing a thermometer with the growth and showing how many dollars were coming in. We could have just as easily sat there and said:
Oh, isn’t this a nice thing and picked up whatever came our way. Instead, we embraced it.
Many of us were working, or on call, 24/7 through that six weeks and after. We continued to push out notable stories and celebrity videos through social media and our growing email list. We were also responding to media requests. One day alone, I did 31 interviews around the world. Each day on our site, we did an update to discuss ALS and related how the dollars would help research. All this activity that we did fueled the organic, viral activity of the Ice Bucket Challenge. That’s what made the huge difference in the success.
The Ice Bucket Challenge led to a lot of things happening. A huge amount of that money was—and is still being—spent on much-needed research. In just four years, Ice Bucket Challenge dollars helped pinpoint the NEK1 gene that plays a role in ALS. We know so much more about the disease than we did before the Ice Bucket Challenge.
Just as important, the Ice Bucket Challenge gave ALS its voice. Before this, people referred to it as Lou Gehrig’s Disease. The Ice Bucket Challenge gave ALS back its name. With the help of social media, awareness went crazy. Prior to the Ice Bucket Challenge the ALS’s average donor age was 50 plus. After, the average donor age dropped to around 35. So not only was perception of the disease changing, but our target supporter was changing as well.
Since 2014, so many times I’ve heard nonprofit boards say:
Hey, we need to do an Ice Bucket Challenge. That’s not likely to happen. The Ice Bucket Challenge worked because it was authentic and organic. This started with three young men with ALS, so it’s not the kind movement that comes from the boardroom. It has to just happen. If you can jump on that and take it from there, you’ve got something. We know: we tried to do the Ice Bucket Challenge the second year with minimal success. We went to our chapters and suggested using local ALS families creating a local Ice Bucket Challenge, but it doesn’t work that way.
We immediately found that everyone suddenly became an expert on how to spend that money. People wanted to spend it all immediately, starting all kinds of new research projects. While a wonderful idea, it’s not realistic. The last thing you want to do is throw dollars out there and get researchers in the middle of a research project and then run out of funding. That’s throwing that money away. We wanted to make sure that never happened with this great gift we received.
There were also a lot of scams being run. I received a call from my colleagues in Canada and someone had taken my photo and sent a scam stating that we were reaching out into Canada with the Ice Bucket Challenge, which wasn’t true at all. We had people who thought we didn’t need money anymore. We had people asking for things that didn’t fit within the mission of our organization. People even ran scams on those with ALS.
Another issue with a viral event like this is it points out flaws in your technology capabilities. Some of our systems were not set up for something this massive. What it really pointed out was that customer service from some of our technology vendors wasn’t there when we needed it most. Afterward, it really challenged us to look at the symptoms we saw.
Our approach was well-thought-out and ultimately has paid off, with our Ice Bucket Challenge dollars funding research projects through 2021. What we did was very methodical. With our board, we planned how to best handle the Ice Bucket Challenge dollars. Early on, we reached out to the nonprofit watchdog organizations, the Better Business Bureau, the Wise Giving Alliance and told them these were anomaly dollars and that we were going to carefully plan how best to use them. We worked very hard on transparency to make sure people understood what was happening and why.
As for our plan, we knew we wanted to spend those dollars wisely over time and we also knew we needed to ramp up our fundraising side so we wouldn’t fall off a financial cliff when those dollars run out.
The ALS Association’s big challenge right now is being able to normalize itself at a new norm. Instead of being a $20 million organization they have to look at themselves as a $40 million organization. The challenge is what investments need to be made for that to happen so they can consistently fund life-saving research into the future.
I’ll be the first to tell you all the stars aligned for the Ice Bucket Challenge to happen. It was wonderful that Pete, Patrick, and Anthony (who sadly passed away in 2017) inspired so many. It was incredible that we made all the right moves in promoting the event. It’s fantastic that just four years later the research is already paying off.