004 – TikTok Marketing with Sara Goldberg & Michelle Sagan of the National Down Syndrome Society

Should your organization use TikTok as a marketing channel? As one of the biggest nonprofits on TikTok right now, Sara Goldberg & Michelle Sagan of the National Down Syndrome Society discuss why they’ve been so successful, how they leverage the work of their policy team, and the unexpected fundraising opportunities they discovered on TikTok.

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, and today I’m joined by Sara Goldberg and Michelle Sagan of the National Down Syndrome Society. Sara is the Senior Director of Development, and Michelle is the Manager of Digital Media.

So this is actually the first time we’re doing a group interview format. I’m super excited to try this out. First of all, thank you both for coming on the show. Sara, could you start by giving listeners a brief overview of who you are and what you do, and then Michelle, maybe you can follow up?

Sara: Yeah, great. Thank you so much for having us, Spencer. We’re excited to be with you. So I am the Senior Director of Development, which means I oversee our communications, marketing, and fundraising activities for the National Down Syndrome Society, which you’ll probably hear us call NDSS. But we are the largest human rights organization for individuals with Down syndrome in the US. And we are very focused on our community, on supporting both individuals and their families and their caregivers with resources and support, with policy and advocacy activities, and then with some community engagement through events and other means such as that.

So I’ve been with the organization since last January. We are a 41-year-old organization, we’ve been around for a long time and we’re just excited to talk with you today about what we’re doing.

Spencer: Awesome. Thank you, and Michelle, why don’t you go ahead and give your introduction as well?

Michelle: Okay. Thanks, Spencer. So my name is Michelle Sagan and I’m the Manager of Digital Media at NDSS. So that means I oversee our social media, our email marketing, and our website. And I am coming on my fourth year at NDSS now this summer.

Growing a TikTok presence

Spencer: Well again, I’m super excited to have both of you on. I think it’s going to be a really cool dynamic here to get both perspectives. And actually, I wanted to start by asking you a question, Michelle. We were talking a little bit before the interview and you mentioned that NDSS is one of the biggest nonprofits on TikTok right now. So could you start by giving listeners an overview of how you got into TikTok in the first place and some of the initial steps you took to grow your presence?

Michelle: Yes, Great question. The question of TikTok is a fascinating one with NDSS especially as it’s grown too. So our policy team came to us and they really wanted to get a TikTok going for us. Is it even going to stick around? Is it going to disappear? Like some of the other social channels? But we said, “you know what, run with it, go policy team, handle the TikTok.”

So I think what really works for us is that it’s the policy team highlighting pieces of our legislation that we’re working on, and we’re lucky in a sense because our legislation is eye-catching. It’s shocking. So this wow factor is what really helps us stand out.

The age range for TikTok is very varied. So it’s tough to really understand who exactly your audience is, but it is skewed very young. So what we really focus on is the awareness aspect of Down syndrome and helping people who have no idea what Down syndrome is—people who have never met someone with Down syndrome—really helping them understand.

So we put our self-advocates with Down syndrome—who we work with at the forefront of all of these videos—they’re the only ones in our videos, and they’re the ones that are sharing that message and our popularity on TikTok has been so successful, it’s translated onto other channels. So people are sharing our TikToks on Twitter, on Instagram, on Facebook, and it’s really helped our engagement and we’ve grown on those other channels because of it.

So the biggest thing with TikTok (like all channels, because you’re scrolling) is how can we get people to care? You have those three seconds to catch someone and people scroll endlessly on TikTok. They’ll joke about, “I spent hours and hours scrolling,” you get deep into that hole. But with our self-advocates at the front of it all, were able to catch people in those first few minutes because they’re also really good at telling their stories.

So one of our biggest videos that went viral—this is what really helped us kick everything off on TikTok. It was viewed 4.4 million times. It was my coworker Charlotte, and it was featured on Good Morning America Online, Today Online, Buzzfeed, multiple others, and some local pieces as well. It was called “things about Down syndrome that don’t make sense.” So she really highlighted some of these inequalities that she faces as someone with Down syndrome and people were chiming in that they had no idea that our community was facing these challenges.

So they were shocked and then we made them care because it was coming from Charlotte. So people without connections were starting to care. We got them to stop scrolling. And some of those pieces actually touched on that people with Down syndrome and disabilities can legally be paid sub-minimum wage. So they’re making pennies on the hour and it’s completely legal. People with Down syndrome and other disabilities can’t get married without losing their benefits, their health care, and other essential pieces there, and then when it comes to organ transplants, you can be denied an organ transplant because of your disability.

So Charlotte touched on these pieces and that really skyrocketed. People that knew someone with Down syndrome and cared about Down syndrome—were familiar with it—but were enraged again. People that had no idea were shocked and wanted to get involved. So we got lucky in a sense, but at the same time, our content is impressive.

We were lucky to be able to work with TikTok a little as well. Their nonprofit arm has really grown and they’ve helped us with some strategies here and there. But having people with Down syndrome creating these videos for us telling those stories has been monumental for us in terms of growth on this new channel.

Centering communications on the individual with the health issue?

Spencer: I think what’s really fascinating about that it seems like there’s this two-pronged approach. You highlighted two things. The first is that you’re highlighting a shocking issue, right? You mentioned that you’re highlighting the legislative issues that your policy team pulled out. Those are very attention-grabbing. And then it’s also shared by, I think you called it’s a self-advocate, right? A person with Down syndrome who is sharing that.

And so Sara, could you help give me some back story here on centering the communications around individuals with Down syndrome? Because it really does seem like having that message come from someone who actually has is experiencing the problem is part of what is helping your TikTok blow up and maybe your other awareness channels.

Sara: Yeah, 100%. And we’re really very deliberate about that. We have a history of always including the voices of individuals with Down syndrome in our publicity, in our work. But our previous CEO was a much more public figure. And our new CEO, that’s one of the changes that she wanted to make.

With leadership often comes a change in marketing approach. And that’s been the case with our CEO of the last two years, Kandi Pickard. She is herself the mother of a child with Down syndrome. She’s a tremendous spokesperson. But she feels really strongly that the voices of people with Down syndrome should be the most heard, that their images should be central in all of our work, but especially in our marketing communications. So we’re fortunate, as Michelle kind of alluded to, one-third of our staff is individuals with Down syndrome.

And so they are right there, every day, in all of our work, sharing their stories, speaking on behalf of the organization. We’re not going out and finding someone to do that. They’re right there. We also have a lot of other people that fill those roles for us. But we can lean on our staff to do what staff do and to give those authentic voices. So, beyond using our staff, we also do a lot of work broader in the community, to put people with Down syndrome out there and to raise awareness, and to introduce people.

Often stigma comes from the unknown. And so the more we can help people see individuals with Down syndrome in their everyday and see their capabilities, we do that.

So each fall we have a Times Square video that features the photos of about 500 individuals with Down syndrome. They’re submitted from all across the country. That’s a very public way that we show Down syndrome into the general populace. And then we also do that through our social media.

And it’s been about a year now that we have had a campaign called My Story Monday. We’re on Facebook and Instagram every Monday. We feature a diverse story of individuals or families in our community and their experience. So centering the individual with Down syndrome in our marketing—it both creates a deeper connection with our community because they see themselves, but it also helps the general public see the value and the capabilities of individuals with Down syndrome. So it’s inreach and it’s outreach all at the same time and it’s also just the right thing to do.

Evolving from founder-led communications

Spencer: That makes a ton of sense. I loved what you said—I wrote it down—stigma comes from the unknown. I think it’s so powerful because I’m sure there’s people listening right now that are also combating stigma in their own work. And I think that’s a very insightful comment.

Going back to what you said, because stigma comes from the unknown, if you have people in your case with Down syndrome that are the centerpiece of your communications, that’s obviously revealing the unknown to many people.

But Sara, what advice would you give for an organization that might have, say, a founder at the center or a senior leader at the center of their communications who might recognize, “I need to center people that are dealing with a specific condition that my organization addresses.” What would you say to an organization that might be in that situation right now?

Sara: So I think, you know, the great thing about individuals with Down syndrome is they’re extraordinarily capable of being wonderful spokespeople, right? They’re very capable of being at the center. I think, depending on what issue you have that may or may not be the case. But I do think that whoever you put forward in your marketing is going to represent your organization, right? They are. And for founder-based organizations, that can be really hard, because it does start with a person.

In fact, we have a founding family, it’s Betsy and Bart Goodwin and their daughter Carson. But our founder made a very specific decision to get out of that limelight and step aside there. I think whenever you’re dealing with sort of that founder situation, it can be really hard because you’re dealing with ego, and you’re that person who deserves all the credit for founding this tremendous organization, but also may or may not represent your population.

And I think one thing we’ve seen certainly in recent years with the focus on diversity and representation is the need to stop speaking for other people, the need to let people and voices speak for themselves, to share those authentic stories. And so even if you have a population that for whatever reason is not in a position of speaking for themselves, the people who are immediately touched by them, their family members, can also be wonderful spokespeople. So if you’re dealing with babies that can’t speak for themselves, you have parents, you have caregivers, you have other family members that can speak to it.

And I think that the voice of the founder is a very authentic voice, but when you get down to the people that are experiencing something today, that voice just becomes even more authentic.

Evaluating social media channels

Spencer: Yeah, that makes a ton of sense. I wanted to circle back, actually, to Michelle. You made a couple of comments. I’m going back to the TikTok topic.

So there’s two things that came into mind as you were speaking. The first thing that you mentioned, it was almost offhand, but you mentioned that when your policy team first came to you, you were evaluating whether or not TikTok would be a temporary channel. And I honestly, I think that’s the case with all you see—like Clubhouse is big now and if someone is listening to this interview two or three years in the future, I’m sure there’s going to be some other yet-unknown social media platform that’s going to be all the buzz.

So how did you go about evaluating the opportunity for that social media channel and saying, “is this something that we really want to put our resources into and our time into right now? Or is this something we’re going to pass on?”

So what was that thought process like for you? And how did you come to make that decision?

Michelle: Yeah, that’s a great question. So we did have two staff members on the policy team. They had their own personal TikTok, so they were familiar, and they created a Tiktok on their personal account. At work, we were working on a piece for a PowerPoint. And they wanted to use that video to help explain some piece of education policy and employment policy we were working on. So they created a video on their personal accounts and we saw how powerful that video aspect was for that PowerPoint and it took it to the next level.

So we had that idea in the back of our heads that, okay, this could go somewhere. But when it came down to it, the policy team really wanted this. They were very passionate about it. So when you have an employee coming to you and they’re so passionate about making it work, and they’re familiar with it already, you want to hone in on their strengths there. So we were ready to move forward with it because they were excited about it and they wanted to make it work, and they’re using it on their own personal time too.

So it’s not a big task to do this whole other channel for them. Of course, it’s different when it’s personal versus work-related, but there was a passion there and excitement for it. So I think that really helped it skyrocket there and I don’t want to stifle that passion there.

Spencer: No, I definitely agree with that. I think that’s a good observation because as with any marketing channel like social media or even email, web, all that kind of stuff—it seems to me like consistency and sticking it out and being there over time is one of the things that I see successful organizations doing again and again.

So when you talk about “there’s passion there already,” well, someone who’s passionate about doing or that particular social media channel is going to be more inclined to continue that effort and put in the consistency. So that, that makes a lot of sense to me actually.

Grand strategy vs. experimentation

Sara: I just want to say that we did not approach TikTok with a grand strategy. I mean just to further just clarify Michelle’s point, it was like, “let’s go ahead and see how this works.” And we actually specifically discussed launching something on TikTok, but not announcing that we were on TikTok on our other channels because we weren’t exactly sure it was going to happen.

And this was also right when people were threatening to shut TikTok down and all of that, but the reason I wanted to bring that up was not just to point out how we sort of fell into it and got kind of lucky, and then became strategic. But I think it’s a really good example of how sometimes you need to take that leap of faith and see how something will work. And that’s something that TikTok has fired home for us.

And so now we are jumping into lots of other bizarre spaces that don’t seem a natural fit for us, but where we know we can reach a new audience and every new audience that we can reach is going to further our mission makes sense.

Surprise fundraising opportunities

Spencer: Would you actually mind sharing—if you don’t feel like it, then that’s totally fine—but what are some of those new places that you’re jumping into now, maybe that you wouldn’t have jumped into before prior to TikTok? Could you maybe share with listeners a few things that you’re trying right now?

Sara: I’m going to turn it over to Michelle because she got a really funny to-do yesterday, so she can talk more about that.

Michelle: So to be able to fundraise through TikTok, you have to use Tiltify. It’s one of the many peer-to-peer resources out there and through Tiltify we started seeing—since I’m on our social channels—seeing the gaming community was very, very involved in the whole sphere of people streaming whatever game they’re playing at the time and they want to fundraise for their cause. So that was actually tied in a little bit with the age range of TikTok that we were reaching And it somehow has translated into the live streaming world.

So without even trying, we indirectly were able to have people find us and they set up a couple of live streams. We had two or three going on World Down Syndrome Day, March 21 and I’m not even sure what game they were playing, but they were live streaming and it was a very unique place for us. Neither Sara nor I are in that world, but it has opened so many doors now. We’re going to use that opportunity in October, it’s Down syndrome awareness month. So we’re going to create an event through Tiltify and allow people to live stream and come to us in this event space and be able to fundraise for us later this year.

So that’s gonna be a whole new avenue that we have never played around with. But it’s exciting because without even having a strategy in that area, it just came to us. But now we can actually focus on getting the word out to people and spreading that message there. And I think it will translate really well. We can actually spend time on it.

Spencer: Wow, that’s so cool. It just reminds me too of just how opportunities—you never would have been able to have a grand strategy where you were just sitting alone in your office somewhere, being like, “maybe I could use Tiktok and leverage that to get into the livestream gaming community for fundraising.” No one’s sitting around like that, except if you wake up in the middle of the night with that as a dream, and then you dismiss it because you think you’re crazy.

But it’s so funny because the last interview that I did is about this concept of agile marketing, and so maybe it’s just the topic that’s in my mind right now, but if you’re listening, there’s the interview prior to this with Lesli Nordstrom. But just the idea of being able to adapt to those opportunities and uncover things that you wouldn’t have been able to see otherwise, I think it is hugely valuable. So I love that lesson and it just drew me back immediately to a past interview that I did.

Marketing challenges

Spencer: I wanted to switch gears here a little bit and talk to Sara actually. I wanted to ask you—what’s one thing in marketing right now that you’re working on that consumes a lot of brain space and what takeaways can you share with listeners who might encounter that same challenge?

Sara: Sure. I think the one thing that I sort of asked myself constantly is how can we improve and expand our brand position in this very competitive space while still being collaborative? So how do you, how do you stay competitive without acting competitive if that makes sense?

Every nonprofit organization has some sort of kind of competitor collaborator that they deal with. And for some populations that may just be a few players. And in the down syndrome space it’s a lot, there are a handful of other national down syndrome organizations. There are hundreds of local organizations across the country and every single one of them bring something unique to the community. So, you know, we really do need to find ways where we can build our supporter base and our brand without undermining the value that all of those other organizations are bringing to the same exact families that we are supporting and that are supporting us by fundraising and participating in our events and sharing our content.

So how we do that is it does take up a lot of brain space. But I think that we’re really finding our way and our core values are organizational core values, which we developed within the last year have been a really strong guiding force on that. Two of them are service and collaboration, and that’s where our CEO has really challenged us to live into those values. And so we’re working on how do we focus on recognizing kind of that the value of the collective impact that we have in serving our community, How we serve our community better collectively, um and how we can use collaboration to do that.

And at the end of the day, I think it strengthens your brand when you are collaborative and when you do recognize all of that. And so one of those things that we launched in January was a little social media campaign called celebrating 21. I’ll let Michelle who handles that, explain a little bit more.

Michelle: Thanks Sara. So, celebrating 21 came from that idea of collaboration and of course that was a big goal for me on the social channel. Since that’s such an external facing piece of NDSS. So what we’re doing on the 21st of each month, we’re highlighting a different down syndrome organization and they send over a photo and a little paragraph on some initiative that they’re working on, whether it’s their gala or some new program they’re starting or a big event around the corner for them.

And we highlight that on every single one of our channels. So we’re doing that each month throughout the year, every organization gets their little piece and then in return some of them are also sharing it. So it’s kind of that double collaboration there, they’re sharing a little bit more. NDSS and I have noticed too, just because of that, because we opened that line of communication with those other organs that I’m not always chatting back and forth with. I’m seeing more collaboration even if it’s just in little things like a retweet or a repost of noticing that more and more just because we opened that line of communication there.

Spencer: Yeah, that makes a ton of sense. Thank you for sharing that. I know that that’s it’s definitely something that other listeners, other organizations are going through. At least you know the ones from personal experience, like you’re not the first person to mention that. So thank you for sharing that.

Marketing resources

Spencer: I wanted to also ask, I guess Michelle can start here. But what one or two resources would you recommend to listeners who want to keep up with news and trends and nonprofit marketing?

Michelle: Great questions. So we are on a podcast. So I can’t deny how terrific podcasts are. And I listen to the marketing school podcast and this podcast, but it really takes—I realized I’m not a visual learner. I don’t necessarily want to read about this topic. I don’t want to go back to school for this topic necessarily. That’s just not where I thrive. But I really enjoy being able to listen to other people and hear from their experiences. And then, of course, different conferences. When I first came into this role, I joined the NTEN conference, which it was peak COVID.

So it ended up being virtual. But I still learned a lot from so many other of those thought leaders in that realm. So as the NTEN was huge. And I’m currently pursuing my digital marketing certification from the American Marketing Association. So all virtual awesome.

Spencer: Yeah. Thank you, Michelle. And Sara. What about you? What couple resources would you recommend?

Sara: So I must admit I subscribed to a ton of newsletters and I often don’t even remember what they’re called, but I find some great information in my inbox, so I don’t have a specific ones to recommend, but I think sign up for them because you never know what a quick glance will pique your interest or you’ll see something new.

But honestly I get a lot of inspiration from real world examples just by following other nonprofits. So, nonprofits in the health space, nonprofits in the international space. Like the more I see what others are doing, it gives me ideas of what we could consider doing. And sometimes it’s what you see is you, it’s a big exercise in what not to do and you say I don’t want to do that. But oftentimes it’s seeing them doing something neat and saying, how can I put our own NDSS spin on that or what does that that make me, what new idea can that ping in my brain?

So I think even just following others in the real world can be just as useful as kind of following the experts because they are experts, right?

Spencer: Yeah, now that that definitely makes sense and and I do appreciate you actually coming on and being that source of inspiration for other people listening as well, because I think, you know, that’s sort of the point of the show for me is to be able to like spread that and provide inspiration and see what other organizations are doing.

So, thank you for sharing the stuff that’s been working for NDSS. So, unfortunately we’re running out of time here for the show today. But Sara, how can listeners get in touch with you and Michelle if they’d like to learn more about your work?

Sara: Absolutely. So you can come on our website ndss.org and you can subscribe to our newsletter if you want to see what we’re up to, but you can also contact both of us via email at sgoldberg@ndss.org or msagan@ndss.org. Or you can find us on LinkedIn.

Spencer: Wonderful. I’ll make sure for anyone listening to put those in the show notes. And yeah, that wraps up our show today. But thank you again, Sara, Michelle for coming on the show and sharing your wisdom.

Sara: Thank you so much for having us.

Michelle: Thanks, Spencer!

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