006 – Viral Campaigns & The Ice Bucket Challenge with Morgan Roth of The ALS Association

The ALS Ice Bucket Challenge is the gold standard of viral marketing and fundraising campaigns. So who better to bring on the podcast than Morgan Roth of The ALS Association? In this episode, Morgan shares how the Ice Bucket Challenge began, why it was so successful, the pros and cons of viral marketing campaigns, and her advice for other organizations seeking to emulate the same success.

Full Transcript

Spencer: Welcome to Health Nonprofit Digital Marketing, a podcast for nonprofit marketing and communications leaders who are using the internet to reach and engage people with health issues. I’m your host Spencer Brooks of Brooks Digital—an agency specializing in digital platforms for health nonprofits—and today I’m joined by Morgan Roth.

Morgan is the Senior Vice President of Communications and Marketing at the ALS. Association. So Morgan, first of all, thanks so much for coming on the show today. I’m so excited to have you. Would you mind starting by giving listeners a brief overview of who you are and what you do?

Morgan: Sure, as you mentioned I’m Morgan Roth and I’m working now at the ALS Association running the nationwide marketing and communication program. The marketing piece is brand new for us. It’s something that we just launched last year, so we’ve been very, very busy putting legs under our program—and so far so good.

How the Ice Bucket Challenge started

Spencer: Wonderful. Well, as I mentioned, I’m really excited to have you today because we’re talking about viral marketing. It’s been, I think, almost seven years since the original Ice Bucket Challenge, which seems like the granddaddy of all viral marketing campaigns for nonprofits. You mentioned that it’s ALS Awareness Month and so I think it’s a great time to be talking about this. Would you get us started by explaining how the Ice Bucket Challenge came to be and why, in your opinion, you think it was pretty successful?

Morgan: Sure. It was as you said, sort of the “mac daddy” that started a viral marketing craze among nonprofits. The Ice Bucket Challenge was actually started by three gentlemen living with ALS. One was Anthony Senerchia, whose cousin-in-law is a professional golfer and he did the first Ice Bucket Challenge as an effort to provide some public support to Anthony during his struggle.

A gentleman in Yonkers by the name of Pat Quinn and another guy who lived up in the Boston area, Pete Frates, thought that was pretty cool, and they began to socialize this concept of the Ice Bucket Challenge across their social networks and we were off to the races. They were both really broadly connected and they brought in celebrity endorsements and then everybody was doing the Ice Bucket Challenge.

I remember at the time in 2014, I was living and working in Beirut, Lebanon, and I was invited to do the Ice Bucket Challenge from a colleague who was living in Warsaw, Poland. So it was a time where geography, language, politics, none of it mattered. Everybody was engaged and unified in this fight against ALS.

Did the organic nature of the Ice Bucket Challenge make it more successful?

Spencer: I think one of the fascinating things about that is that it wasn’t engineered by the ALS Association. You mentioned it was actually started by people who either had the condition or were supporting their friends or family that had the condition. Could you talk a little bit about why that was important?

Because, at least from my perspective, it seems like that was a very important distinction—that it wasn’t this master plan, that it happened organically. What are your thoughts around that? Do you think that helped it become more successful?

Morgan: I think it absolutely did because it was grounded in authenticity and it wasn’t about fundraising. It was really just about, “Hey, this is a terrible disease. Take a look at this. Don’t you want to get involved? Here is an easy and fun way that everybody can do it.”

You know, in a lot of ways people will be analyzing how this organically started and the outcomes for years and years to come. But I think because it was solely created to help people and to bring attention to a really serious disease that not enough people knew about—I think that was the secret sauce that it wasn’t intended to be a PR stunt or a gimmick.

And I think that’s probably where a lot of nonprofits go wrong today is that they’re really focused on, “how do we make it go viral?” as opposed to “what are we putting out to the world?” And “how easy are we making it for them to understand and engage in a thoughtful but fun, easy, and accessible way?”

Capitalizing on viral momentum

Spencer: I think it’s a really important distinction. As you mentioned, because there’s been so much success and the Ice Bucket Challenge has become the example of a viral marketing campaign, it’s really natural for listeners and maybe other people who are at health nonprofits to try and create that.

But I did want to ask you then, what was the role of the ALS Association in facilitating the Ice Bucket Challenge? How much was the organization involved in? How did you go about identifying that this was a “thing” and supporting it and helping it grow into what it became?

Morgan: From what I understand, and I wasn’t with the Association at the time, but it happened fast. This was something that really happened and exploded within a six-week period of time in the summer of 2014.

From what I understand, there were calls like, “Hey, did you hear about this thing that’s happening in Boston? Did you hear about this thing that’s going on in Chicago, in L.A.?” And it was like, “that’s crazy!” But the phone started ringing off the hook. The checks started coming in to the point where they had to set aside a room for the mail. Everybody was into it and it quickly exceeded the capacity of these organizers to manage it and promote it.

So the ALS Association, my predecessors there, really stepped in to help organize this. To fan the flames, make sure that the larger global ALS community was part of it and could promote it, felt ownership of it, and that was really our role initially. But, of course, we had a $115 million dollar windfall.

I should point out that globally, the Ice Bucket Challenge raised $200 million with 17 million people around the world participating. But the ALS Association was the direct beneficiary of $115 million. And so we had a tremendous responsibility to think through, “what do we do? How do we allocate this money to the best possible means so that we can help the greatest level of people and ultimately use this as an opportunity to get to a cure faster than we would have without this beautiful windfall?”

How did the ALS Associate become the beneficiary of $115 million?

Spencer: I do want to follow up with you and talk a little bit about how you leveraged that. One thing that I wanted to circle back on, actually, that I didn’t realize. Because this was started, as I understand it, by an individual with ALS, it wasn’t necessarily that they had an exclusive connection with a specific organization, but rather this was (and you can correct me if I’m wrong here) an awareness for ALS as a condition and the ALS Association just happened to be, as you said, the beneficiary of a large sum of the fundraising money.

Could you explain to me a little bit of how you—or your perception of it, because I understand you weren’t at the organization at the time—how the organization recognized that this was happening and then put themselves into a position to be the primary beneficiary of that fundraising?

Morgan: Sure. And it wasn’t a deliberate attempt, I think, that people knew about the ALS Association. It’s an organization that’s been around since 1985, but there were other organizations in the space that also benefited. But I think because we were sort of the largest player, you know, we became easy to find and easy to give to.

It really wasn’t our intention to say—we weren’t being opportunistic about it. And we felt that once we did start to receive this tremendous amount of money that we had an awesome responsibility on our shoulders. And we felt very strongly, and once the dust kind of settled, we brought the community in to say, “okay, what do we do with this? This is community money, how do we put it to its best possible use?”

How the ALS Association used the Ice Bucket Challenge funds

Spencer: And I’d love to actually hear more about that specifically. Once you had $115 million, you just—it’s the dream scenario that you described, that literally, the room was full of checks! I’m sure everyone listening to this, it’s just the literal dream.

But going from that place of saying, “okay, now we have all this money.” Could you walk me through the process of how then you started to make decisions on how to allocate and use that money responsibly, as you said?

Morgan: Well, ultimately it came down to mission and research is the first pillar in our mission. And this effectively tripled our research budget. That’s ultimately where we applied about $90 million—research around the world.

We really thought medicine and science is slow by its nature. Unfortunately, ALS is a very fast-progressing disease. Urgency is everything in our work. So we did invest significantly in research, in funding scientists, in helping smaller labs create proof-of-concept that they could leverage to get additional money and follow on funding from other large funders like the NIH and other entities.

So that was really our primary focus: “where can we do the most good?” And research was the number one pick followed closely by care services. You know, there are a lot of people living with ALS today. We want to improve the standard of their day-to-day care. So we were also able to invest in increasing our network of multidisciplinary clinics around the country by about 50%, just to make sure that better treatment was more accessible to more people.

Feeling the impact of the Ice Bucket Challenge today

Spencer: That makes sense. And one of the things I also wanted to ask you about, related to that, is you have this tremendous influx of cash, which I’m really glad to hear that you went through a disciplined process of using that to fund the research and these multidisciplinary clinics.

I wanted to ask you, are you still feeling the effects of the Ice Bucket Challenge even today, or was that limited more to, “we have this one-time influx of cash and we used it well, and that’s it?” I can’t imagine that you’re not feeling it. So maybe the question is more, how are you feeling it today? And what are the effects that you’re experiencing right now?

Morgan: We’ve always been very responsible about reporting the impact of those dollars expended on research and care services. We have, and you can still find it today, a button right on our homepage and you can see how every dime was expended and where it went. And we thought it was really important that we were responsible about making sure that everybody was clear on how those funds were expended. Then in 2019, we commissioned an independent report on the impact of the Ice Bucket Challenge. So RTI came in and evaluated and gave this independent assessment of what was raised.

So I think because we maintained relationships with the donor community that supported the Ice Bucket Challenge, and because we were diligent about reporting impact—not just from our standpoint, but also sharing the stories and testimonies of the men and women living with ALS that we serve today—we were able to secure the confidence of the community. So fortunately we’ve been able to keep revenue coming in towards this mission.

I think a lot of people felt like they wrote this chapter. They want to write the next chapter as well. They want to get to a cure.

Spencer: That’s also something I think is worth highlighting as well. Because I think certainly what I hear you saying is that it matters a whole lot after you receive that large influx of money, then what are you going to do with it? And are you going to be able to use it? Not just in a responsible way, but then be able to communicate how you use that responsibly in order to retain the support and follow on and capitalize on that momentum, which actually was something that I hadn’t fully considered.

But it would, of course, be a serious consideration both for myself and also for anyone who is listening who might want to enact the dream of the viral marketing campaign. Certainly, that’s a question to consider. “Okay, if you raise a lot of money, you gain all this awareness, then what are you gonna do after that?” So, I think that’s a fantastic point.

Pros and cons of viral marketing

Spencer: I wanted to get your opinion as well, when it comes to viral marketing campaigns, do you have any thoughts—and I’m kind of jumping you a little bit on this—but on the pros and cons of viral marketing? Any quick thoughts that you might have to outline on what people should know about the good stuff and the not-so-good stuff when they’re considering a viral marketing campaign for their organization?

Morgan: I think any marketer who’s listening today, I think we’ve all been approached by somebody in our management team, on the board that says, “how do we make this go viral?” Or “give me a viral campaign.” And all of us just are like, “oh, you know, it doesn’t work that way.”

A viral campaign is not something that you design, it’s something that the community designates as viral and what gets the community to say, “Hey, I want to share this.” You know, it takes one person to say, “somebody over here needs to see it. Hey, this was really great. Hey, do you know about this over here?”

It’s about the quality of the content, right? It’s, not about the stunt, it’s not about the gimmick, that’s the window dressing. How authentically articulated is your case statement as you’re putting it out? Is this something that’s viable for your stakeholding community or your aspirational stakeholding community to do or to adopt? Your best bet is to just be really diligent about “who are we talking to? What language are they speaking? What’s the vernacular? How do we reach them? What’s the right platform and is this going to resonate?”

That’s where you stay focused and you can fan the flames. But again, the community decides what’s viral, not you, not your manager, not your board. You have to do your level best to tell a truthful, authentic story of hope, urgency, and impact.

Spencer: That makes a lot of sense. And I’m reminded of what you said in the very beginning, actually. Where you made a simple comment to the effect of, “when this was originally getting shared, the three gentlemen that started the ice bucket challenge were sharing just simply how horrific the condition is.”

And I think that’s it’s worth noting, because recently I was doing an interview with one of the largest nonprofits on TikTok right now. And they had a similar success story where they were using people—in this case with Down syndrome—to communicate, “here’s what it’s actually like, just shedding a light on this, it’s actually really bad to be an individual with Down syndrome.” Or “here’s what’s really bad about living with ALS.” And that sort of speaks for itself.

And I was just reminded of that simple truth that oftentimes, as you’re alluding to, it’s not a manufactured campaign or something like that that you can create into being, perhaps, but that it’s the quality of content.

And I think in some ways I’ve seen that just highlighting the day-to-day reality of the story of someone who has this particular condition. So I think that’s it’s really fascinating.

Morgan: Nobody tells your story better than the people who feel your mission. And that’s why we do a lot of first-person storytelling, we don’t need to tell the story for our community, they’re happy to share their experiences and they tell the story much better than we ever could.

Final thoughts on viral marketing

Spencer: I love that. It does seem to be a recurring theme. The more conversations like this I have, the more that topic seems to be recurring.

I do have a few more questions that I do want to ask. Are there any thoughts that you want to leave on the topic of viral marketing as we move on to the other questions? Are there any final thoughts on viral marketing that you wanted to leave listeners with?

Morgan: Yeah, I want to make sure I didn’t come across as saying you shouldn’t take big swings because you absolutely should.

You know, it’s a really crowded, noisy space in the healthcare sector right now, right? We’re all fatigued by Covid and a lot of marketers and communicators that work for diseases like I do, you know, you don’t want to be forgotten. Well, everybody’s talking about Covid because Covid has created a lot of complications for a lot of different diseases. So, you know, it’s a noisy time. And you do kind of have to come up with some clever way to cut through the clutter. But again, I think if you don’t have true, authentic, compelling content at the core of your messaging, you know, a fancy wrapper isn’t going to get you where you need to be.

So yes. Do think big. Do be clever. Do be out of the box. But also do your due diligence, do a little testing. Try some focus groups, ask your core community of stakeholders, “how does this resonate with you? Would you get behind this? Does it ring true to you?” I think the more people you can engage and involve in sort of vetting a concept that’s a little bit out of the box, the better off you are.

Marketing challenges

Spencer: I did, want to ask you a couple more questions, Morgan. Switching gears a little bit, what’s one thing in marketing right now that you’re working on that consumes a lot of brain space, and what takeaways could you share with listeners who might encounter that same challenge?

Morgan: What a great question. So I think one thing that many of us in the space are dealing with right now is sort of this general, global communication environment that we’re in, particularly on social media in the disease space.

It’s really important that miscommunication and malcommunication is something that we can get in front of. You know, we worry a lot about this sort of burgeoning environment on social media where anybody can say anything. It’s kind of shocking and we’ve noticed that we are—our platforms are—being hit upon almost daily by snake oil salesmen hawking herbal remedies and homebrew cures and when you’re talking to a community of people who are dying from a disease for which there is no cure, or you’re the loved one of somebody, there’s an urgency and desperation. We are really trying to get in front of the people who are preying on the desperation of our community and I think that’s something that my peers and other disease organizations can relate to.

So we really want to make sure that the platforms that we’re using are being responsibly managed by the platform owners, but also that we’re doing our level best to stay ahead of this kind of information and keep a steady cadence of real information and useful information about where we are with treatments and cures. So people aren’t looking—people don’t become victims to people who are very cruel and unscrupulous. We worry about that a lot.

Other than that, again, because we’re so reliant on marketing on digital platforms, they’re evolving every day. We try to be not necessarily data-driven, but data-informed about where our stakeholders are moving and trying to deliver the right message at the right time on the right platforms. So it does take up a lot of our time to stay current with platforms, what’s happening, and our community’s preferences. where do the people who are really interested in research, where do they hang out? Where are the caregivers hanging out? Who’s reading what, you know?

So we do pay a lot of attention to data, the more the better. And we speak to our community all the time too. We have a number of focus groups and patient informal and formal groups that we like to tap and say, “what’s the next thing? Where are you moving to next? What do you think about TikTok? Is twitter done?” So just knowing where your stakeholders sit and what kind of messaging is resonant, that’s something we spend a lot of our day trying to interpret and forecast.

Data-driven vs. data-informed

Spencer: I feel like we could probably do an entire interview just on that particular topic! I wanted to ask you one follow-up question on that. Hopefully I’m not opening too much of a can of worms.

You use the term data-driven versus data-informed. I wanted to ask you to unpack that a little bit. Could you give listeners an idea of what that means to you?

Morgan: Sure, I love data. I’m a data nerd. I could look at it all day and it really excites me, but at the end of the day, you’re talking about relationships and people and we don’t want a transactional relationship based on numbers.

You know, I don’t want to be talking to you because polling says that’s the right thing for me to do. People are fickle, people change their minds. And while I think that data can give us a really good general idea of the environment, it’s the people that really tell you like it is.

It’s easy to misinterpret data and we do it all the time. It just happens and it changes so quickly. So I think you watch the data over here, but you always keep those live human conversations going. You don’t want to be a voiceless, faceless specter to your stakeholder communities. They should know you, know who they’re talking to, and also that your interest in knowing them comes from a legitimate place. I want to know you because I want to know how to give you this information that I think you’ll find really informative and exciting or necessary.

And you just have to remember, it’s all about the relationship, and the relationship is nothing if it’s not authentic.

Spencer: Right, that makes sense. And it sounds like you’re taking the numbers—and you can correct me if I’m wrong here—but taking those numbers and then trying to interpret them as best you can, and then actually use that to create talking points to your stakeholders and actually ask them, “am I on base here, or does this match what you think?” Is that what you’re getting at?

Morgan: Exactly!

“Validate this—I’m seeing this trend that points over here. Is that where you are?”


“No, but I’m heading there soon.”

It’s just good to test interpretations of data all the time.

Marketing resources

Spencer: That makes sense. And I appreciate that perspective as well because I know that there’s a whole movement—there’s good stuff and there’s a lot of pitfalls with data as well. So thank you for sharing that wisdom.

I want to also ask what two or three resources you would recommend to listeners who are just interesting in keeping up with news and trends on nonprofit marketing or even marketing in general?

Morgan: There’s a new book out that I’m very excited about. It was written by a mentor who is also a friend by the name of Marc Whitt. It’s called PR Lessons Learned Along the Way and it’s a compendium of lessons and strategy that’s Marc is sharing from his very long and illustrious career in nonprofit and higher-ed marketing.

What I like about the book is it is practical. I have recommended it as something that’s appropriate for anybody who’s new to nonprofit and higher-ed marketing, but it’s also something that I go back and refer to because from time to time you get so caught up in the work. You forget the simplicity and the elegance of real marketing. Again, we all get caught up in data and gimmicks and it’s really good to come back to the inherent service orientation of our calling. The imperative of integrity and leadership and urgency. I really think it’s a good read. It’s out maybe a year already, but I really go back to that book quite often and I recommend that to everybody.

I also get a lot out of marketing Twitter. There is a brilliant community of global nonprofit communicators that are very generous about sharing ideas and facts and content, and the people I follow and find exceptional who provide me with a lot of food for thought are too numerous to mention. But if you want to look me up on Twitter, @MorganR_DC. Look who I’m following and you could probably get some really good ideas. Marc and I met over Twitter and he was somebody that I contacted offline and said “could you help me think through this problem I’m having?” And a great relationship was born of that. So I get a lot out of Twitter to that extent.

And then finally I would say, you need to religiously read the trades—Chronicle of Philanthropy, Nonprofit Times, blogs that Candid and Bridgespan and Guidestar are producing—because I think to be an effective marketer, you have to know the whole business. Great that you’re a master of marketing and comms, but you really have to stay current with business trends in the nonprofit sector. And I get a lot out of reading trades on a regular basis and sharing articles that I find helpful and that kind of breakthrough thinking about the craft and the sector in general.


Spencer: Well, thank you for sharing that, Morgan. I’ll make sure I put a link to your Twitter as well as Marc’s book in the show notes for anyone who is listening. I just wanted to wrap this up by asking how can listeners get in touch with you if they’d like to learn more about your work?

Morgan: Sure. Well, I invite you to find me on Twitter or LinkedIn, I’m at linkedin.com/in/morganisonpoint. I’m happy to communicate and connect with fellow marketers there. You can also look at our work at als.org. That’s a brand new revitalized website. And we launched about a year ago our own podcast where we talk about ALS and you can find us at connectingals.org.

Spencer: Wonderful! Well, that wraps up our show today. Thank you so much, Morgan, for coming on, for sharing your wisdom, and I just appreciate everything that you’ve communicated to myself and to listeners today.

Morgan: Thank you. Spencer. It was a pleasure to be here.

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