The following is a conversation between Susannah Schaefer, the President and CEO of Smile Train, and Denver Frederick, the Host of The Business of Giving.
Denver: Smile Train is dedicated to providing life-changing corrective surgery and comprehensive cleft care for children with cleft lips and palates. Since its establishment in 1999, the organization has transformed the lives of more than one and a half million children.
Welcome back to The Business of Giving, Susie.
Susie: Thank you for having me back, Denver. It is so great to be here.
Denver: Tell us about the birth defect that you’re dedicated to treating, that being cleft lip and palate. What causes it?
Susie: So, there is no known cause for cleft lip or palate and why that happens in about one in 700 births worldwide. There could be a genetic predisposition to it, so you can see the condition repeat in families, or it just happens. A family can have a child with a cleft where there was no cleft ever before in either line, either the maternal or paternal line. So, no known cause, but it is the most common facial birth difference. And we’d like to say “birth difference” with regards to cleft.
Denver: For people who are not familiar with it, tell us what it is.
Susie: A cleft is where certain body parts didn’t fuse together during the gestation period when a woman was pregnant, so certain facial structures just did not come together, and it leads to cleft palate; it would leave a hole in the roof of the mouth, and cleft lip is where the lip is also not connected.
So, a child can be born with a cleft palate and have closure on the lip, or they can be born with a cleft lip and palate, where the palate is open and the lip is open. And there were two types of cleft lips; one is unilateral where one side, either the left or the right side, is open, or bilateral where both sides are open.
“It’s not more prevalent in one country. I think what sometimes gets misunderstood is its treatment, and so it seems like it’s more prevalent in low-resource countries, and that’s because of access to care.”
Denver: In what countries is cleft prevalence the highest?
Susie: Well, as I said earlier, it is one in every 700 births, so that’s roughly about 195,000 births annually, and that is a global number. So, we have cleft here in the U.S. It’s not more prevalent in one country. I think what sometimes gets misunderstood is its treatment, and so it seems like it’s more prevalent in low-resource countries, and that’s because of access to care.
Denver: Got it.
Susie: So, there is a lack of access to care in low-resource countries, where as here in the United States, we have a healthcare system that treats cleft, so we don’t see it.
And this is where Smile Train comes in because Smile Train is providing treatment for people with cleft in low-resource countries.
“You can only imagine what that must feel like; this is your face and you have a facial birth difference, and so in a low-resource setting, children are ostracized.”
Denver: We think about the physical manifestations of it, but I would imagine there are a lot of social ones as well, whether it be isolation or prejudice. Tell us a little bit about that journey for both the child and the family.
Susie: Yeah, and that’s so much of the importance of our work because cleft is not seen as a medical condition in low-resource settings. It’s seen as a cosmetic problem, and there is a severity to cleft too. Babies born with clefts have trouble eating, speaking, and breathing, for instance, and babies can have difficulty feeding. So, nutrition is a big factor with low birth weight babies who are affected by cleft.
So, when you think about a child that has not had that access to treatment, they are living with an untreated cleft, and you can only imagine what that must feel like; this is your face, and you have a facial birth difference, and so in a low-resource setting, children are ostracized. Sadly, we hear stories where cleft babies are actually killed at birth. It could be left on the side of the road, just left because parents are ashamed. They don’t understand what caused the cleft, and they don’t know that there is access to treatment.
Denver: And as you said, there’s probably not as much access to treatment in some of these developing countries as there should be, and that is where Smile Train comes in. So, tell us a little bit about that and also, how your model differs from other cleft organizations.
Susie: I think that’s the critical piece here. When Smile Train started, we wanted to meet the need for these patients, as we saw at that time when we started in 1999, they had no chance; they needed a second chance at life. And at that time, there was such a backlog of patients too— so many children, millions and millions with untreated clefts— and Smile Train wanted to take a different approach to treatment because at that time, the typical model with treatment was a mission-based model where flying doctors, surgeons, medical professionals came in from Western countries to treat clefts.
And our founder felt, “Who is taking care of that child who’s left behind, who doesn’t make it into the mission trip?” Because the mission trips would generally be one to five days. So how many children can you operate on in one to five days when you have millions and thousands of families showing up at partner centers looking for treatment?
He wanted to build a sustainable model to treat clefts. He was thinking more about that child that was left behind. But not only that, there are also surgeons in the countries to begin with, but there just weren’t enough. So, how can we develop a model for treatment for clefts where we are providing the funding of resources to these medical professionals that would build this long-term sustainable system to treat them?
Our founder, Charles B. Wang, was a tech entrepreneur, very successful in his own way, and had the ability to put an entrepreneurial approach to the treatment of cleft and say, “Let’s try something different.”
Sadly, we lost Charles in 2018, but I remember him saying, “We’re just going to try that and see what happens.” So many years into this, I remember before he passed he said, “Who knew? Who knew we would reach over 1 million patients,” when we celebrated our 15th anniversary and our 1,000,000th patient in 2014?
Our work is so important at Smile Train, and it’s incredibly special too.
“Which we have a VR extension to, because yes, we always need to keep evolving and innovating. We also now have Simulare Medical, which is a division of Smile Train, which is a training module– actual simulators, which a learning surgeon can simulate surgery on.”
Denver: He sounds so much like an entrepreneur: “Let’s just try this.” They’re always experimenting and always iterating, and I think if we take a look at your model today, it makes some sense, but I don’t think you can fully appreciate how enlightened that model was back in 1999. It was certainly a decade or a decade and a half ahead of its time, and it is now… we look at it and realize, “Yes, this is the way we need to do it. We need to build local capacity and develop those professionals on the ground in those countries.”
What do you do currently in that way? What do you do to build that local capacity and professional development?
Susie: Education and training is a big part of that. With Charles’ tech background, we have always put technology innovation in the forefront of that. His mind was always, “How can we do something faster? How can we be more efficient?”
This goes back to our early days when we started treating patients and working with our medical partners on the ground and saying, “We have to have a record of all the patients we treated.” He had such an amazing ability to think ahead and say, “Let’s have that record.” And so with the technology, we created Smile Train Express, which is a database that captures every record of every patient we have treated. So, now, we have over 1.5 million records.
Denver: That’s amazing.
Susie: Who has that? And what an incredible data set! But that was the type of vision that he had— technology. We’re capturing data, being able to measure our impact. But for education and training, using technology to help train these local doctors who need access to training materials and educational materials; so we developed the virtual surgery simulator.
Denver: Which I just noticed, you have a VR extension to.
Susie: Which we have a VR extension to, because yes, we always need to keep evolving and innovating. We also now have Simulare Medical, which is a division of Smile Train, which is a training module– actual simulators, which a learning surgeon can simulate surgery on.
It’s pretty incredible what we’ve done to advance the education and training and using technology to do that, using the internet, having trainings, and this is a very large part of our work because we do need to be evolving a long-term sustainable system of cleft care, which is training that next generation of surgeon and medical professionals.
Denver: Well, in places I go, when I go for my medical treatment, I’m still handed a clipboard and I’m filling out the information, so I wish they would do something about that.
Susie: It’s going into a database, and it’s capturing data.
Denver: If they can read it.
How many surgeries do you do annually? And what does it cost for a surgery?
Susie: We, right now, post pandemic are doing about 100,000 surgeries per year, and we’re operating in over 70 countries presently, and the average cost of a surgery can be as little as $250.
Denver: Wow. So it sounds like it’s a solvable problem if the resources are there.
Another challenge obviously is locating children in need. How do you go about that?
Susie: That’s another big part of our work which is patient mobilization and education and awareness for cleft treatment. So, that is really where our partner model really comes in because we work with local partner hospitals obviously with medical professionals who are treating the children, but also to provide awareness grants so that they can go out into their local communities, be able to educate on cleft lip and palate.
That even comes down to showing before and after photos so that you can go into a village, let’s say, in a country… in Africa, and say, Do you see a child that looks like this, that needs help? Please let us know through a social worker or community health worker, frontline health workers. Here is a phone number you can call for treatment. It’s our partners who are mobilizing those patients and helping them get to centers, to the care that they need.
Denver: You know I listen to everything you say, and you sound like the ultimate case study in scaling for impact— it’s local capacity, it’s professional development, it’s partnering with hospitals and so on down the line using technology.
What lessons could you crystallize, in terms for other organizations, about how you’ve gone about scaling for impact?
Susie: Our model is a partnership model. There is that saying, “It really takes a village,” and it truly does, and I think our work at Smile Train is a great example of that.
What I say to our team here at Smile Train, “We need to be a good partner.” Some of the team are medical professionals; they’re doctors. I’m not a doctor; we need to be a good partner; we need to listen. We are empowering and enabling them, so they need to be able to talk to us and feel that we are open and we are listening, and it’s our job here at headquarters in the U.S. to be able to raise the awareness for cleft treatment because we’re raising the funding to support it, but then being good stewards of our donors’ dollars and making sure it’s going to where the need is the greatest.
It’s all about partnership relationships. Our partners are on the ground; they’re talking to us; they’re telling us what they need, and then we’re able to put the pieces together on the back end and make sure we’re meeting that need.
A really good example of that in our growth, especially in these last few years, is cleft treatment is a journey. It’s not just one surgery many times. When you speak to someone who is affected by cleft, and especially here in the U.S., they could have 20 to 25 surgeries over the course of their lifetime; it’s a journey, and it could be a 20-year journey.
As we scale, as you were asking, it’s about scaling our programs too. When we started in 1999, we were so focused on that backlog of untreated clefts, and so it was a real surgical focus, but through working with our partners and listening to our partners and understanding what the need is– just like our treatments here in the U.S.– we need to be able to provide for the whole journey for the patient.
To thrive, cleft patients need to be fully rehabilitated, so that can involve speech therapy over many years, orthodontia, psychosocial support for the patients. So, we are providing that holistic, comprehensive cleft care model for our partners, and that is about scaling, and it’s also working with local governments because it’s all about education and advocacy.
So, our work, as I said, it’s so important, and I think it’s become a great model for other birth differences to take this sustainable approach to treat them.
Denver: Yeah, and deal with the whole person– the wraparound services; that’s part of the whole evolution because I can only imagine the trauma that a lot of these young people must have. It just doesn’t go away when the surgery is done, even if it’s successful. There’s a lot that they have been through, and you stick with them through that.
You talked about partnerships, you talked about resources, so tell me a little bit about your fundraising and your partnerships. I know you used to get a lot from direct mail; you probably still do, but I’d be interested in how it’s evolved over the last few years, and particularly these last three years when we’ve had COVID and the pandemic… and maybe some new ways and innovative ways of generating resources that will be there for the long term.
Susie: I think I always said to the team, “We have a sustainable model of treatment for cleft, which is what we do. We also have to have a sustainable model for fundraising.”
Susie: So, you are right, Denver, you recall we do have a strong direct mail program at Smile Train; it’s still very much so that we still have a lot of support that comes through individual giving and direct mail, but we have evolved obviously. Digital plays a big role in that. Social media plays a large role in that.
So, just like our treatment model, we have evolved our fundraising channels. Individual giving is still our largest supportive base at Smile Train. We do have some wonderful corporate partners that we’ve been working with. Haleon, which is the consumer health division of GSK, but it’s the new company that came together from the Pfizer-GSK Consumer Health Group… coming together.
So, we worked with what was GSK and their Consumer Health Group for five years, and now they are called Haleon, and we are still working with them, and they have been just a wonderful partner to us, really helping us raise awareness for cleft lip and palate treatment around the world. Our values really align in who we are as two organizations… and we’re coming together in that oral health space… has been wonderful. They have a very large footprint outside the U.S., so it’s been just a great partnership. Their employees are engaged and involved, and it’s been a wonderful partnership for us.
Denver: Great point you make too. I think so much of partnerships are transactional, and they work and they’re successful, but they’re very short-lived. But when you do take the time to see that their values are aligned, you do get that kind of an engagement, and you get that long-term relationship well beyond the one-off. So I’m really glad you brought that up.
Susie: Yeah, they’re wonderful, and similar is Dentsply Sirona, which is the largest international corporation that supplies dental equipment to dentists and orthodontists. So, they have been another wonderful partner to us, and we’re doing some exciting innovative projects with them to advance digital oral scanning… so that’s been wonderful.
It’s just been really nice that we’re also working with the Miss Universe Organization. We are their charity partner, and they have been amazing to us in just aligning, again… their whole ethos is about being confidently beautiful, and so it really aligns with who we are as an organization as well, and so we have been aligned with the Miss Universe Organization, which is headquartered out of the U.S., but we’ve been aligned on the country level with all of country title holders. So they just have been fantastic helping us raise awareness for cleft lip and palate treatment, meeting with our patients, and doing fun things together to just make them feel good, especially the young women who are just helping to help our young patients feel confident about who they are… and that beauty is from within. And have your courage, and embrace who you are.
“I think that’s very much of what nonprofit fundraising is today; it’s about the relevance. It’s about speaking about your impact.”
Denver: Absolutely, that’s great. I know you’ve got a lot of day-to-day stuff you do, but when you think about your evolution in fundraising and development, do you ever take a moment and imagine what’s going to happen with global philanthropy and nonprofits over the next decade or so, because this is, finally, a space and a sector that is moving? We’ve probably been a little slow to move, but you can see the pace picking up, and I don’t know whether you had any thoughts or insights on that.
Susie: I don’t think I answered your earlier question about the pandemic and fundraising. I think these kind of go together because I think there were so many lessons learned during the pandemic with regards to nonprofits. I think smaller nonprofits… some didn’t make it through the pandemic. The larger nonprofits, just like Smile Train, we stayed the course during the pandemic. I think when that happened, everyone was so nervous. You don’t have events; no one knew what was going to happen. We stayed the course, so we didn’t pull back on anything. Obviously, events couldn’t happen, but we stayed the course on our fundraising, our direct marketing programs.
I think for many nonprofits during that time is: we realized we had a captive audience and so we worked it, and we made sure we were present; we were working behind the scenes, making sure we were on social… you have to stay relevant and stay active. So, I think now when you look on the other side of the pandemic, how we all came through, I think that’s very much of what nonprofit fundraising is today; it’s about the relevance. It’s about speaking about your impact.
Donors and supporters are a lot smarter now. They want to understand, when they’re giving, “Who are the stewards of our dollars, and who are we helping at the end of the day? When I make a donation, who is the beneficiary? Who is benefiting from that?”
So, your communications, your appeals, they all have to speak to the need, obviously, but also who is benefiting from the service. So, those wonderful stories and case studies of patients who have been rehabilitated are very, very important. But it’s making sure you were seen and heard, and social is a great space for that, digital. Thank you, Denver, for having me on today because you’re giving me the opportunity to speak about Smile Train and to the media as a partner in that.
Denver: I think you’re absolutely right about impact. I believe that before the pandemic, when I talked to a lot of people, Susie, they indicated to me that there were good charities and bad charities, but it was just a matter of degree. And the more I talk to people these days, they realize there’s some really awful charities that do nothing, and there’s some really great charities and they’re becoming far more discerning in who they’re going to support, and they’re much more interested in what that impact is going to be.
And as you talked about a captive audience, I had somebody on the other day, and he said that once the San Francisco Ballet from their gala gets a gift from Atlanta, Georgia, there’s no going back. So, I think you’re right; it’s just made the tent that much bigger.
Let’s talk a little bit about your leadership. You’ve been at the helm here for about a decade or so, and I know that your leadership has undoubtedly evolved and grown over those years, but probably particularly so over the last three when there was just a whole new way of leading… and let’s face it, a whole new cohort in the workforce who had different expectations.
Tell us a little bit about how you think about that.
Susie: The pandemic really turned everything on its head as we know. We grew a lot during the pandemic at Smile Train. At that point, surgeries were on pause in some locations. We really took a step back, and we were looking at our education and training; we were looking at our impact and seeing where we needed to be adding resources. So we actually grew a lot over the pandemic, and with growth can come that much more that you take on.
I think, for me, not being together face-to-face was definitely a challenge. You take for granted personal connections, which when all of a sudden, we just didn’t have that anymore… Not only was I not going to our New York City office where our headquarters is… and we have our largest grouping of staff, our team, so much of the engine behind Smile Train… I couldn’t travel and visit our teams in the countries where we work and our staff on the ground, which is so much of the importance of my work. It’s connecting to the beneficiaries, but also connecting to the team on the ground. So, during that time and even now, I just see that personal connection is important.
I’ve been traveling a lot because I need to have that time together with my team. I always had a saying at Smile Train, “My door is always open.” I want to be approachable, and I want the team to feel like they can just grab me and bounce an idea off, or they’ll come in and chat. Small talk is important; that’s how we get to know each other. But you don’t have those times where you’re going to grab a coffee in the kitchen or, as I said, I wasn’t visiting the field. So you’re on a Zoom call… and how do you make those connections?
So, I’m grateful the pandemic is over, and then we can be together again.
Susie: There is such power in that, and leadership is important, and mentoring team members is important.
Denver: Do you do anything unconventional in your leadership style? There’s a lot of best practices, but do you have anything that you’ve tried or that you practice that is a little out of the ordinary but quite effective?
Susie: I have never taken my leadership role as: it’s me and them.
Susie: I have always wanted to be together, but I understand that at times it has to be me and them; that’s what leadership is. So, maybe that’s unconventional. I want to be approachable. I want our team members to feel they can approach me. I want our partners to feel like they can approach me. I guess, in some senses, that could be unconventional, maybe, in the traditional styles of business and leadership.
Denver: But I think it’s very wise because I’ve talked to some folks, and I’ve read some things, and they said, “Leaders need to be more interruptible,” and in terms of really maintaining the engagement of staff, when you’re a little too important, a little too busy, and a little too focused for them, that doesn’t pay long-term dividends… may pay short-term dividends to finish your project, but long-term, they just feel that you’re too busy for them. And we know the challenges of recruitment and retention and engagement, so I think it’s a pretty smart way in which to go.
Susie: Yeah, people want to feel valued. They want to feel that their opinion matters. They don’t wanna be dismissed, and dismissed, I mean, a dismiss of attitude, like in a sense, “What you say is not important.”
Susie: So, it’s a balance, and I take that extra time to explain. A big thing at Smile Train, and maybe this is unconventional, I don’t know if you’ve heard this from other leaders you’ve spoken to, but when we were putting together our five-year strategic plan, which we started right before the pandemic, I wanted an initiative in the plan that was explaining the why— why decisions are made — and being transparent about them because it’s important. People need to understand, and I realize that from doing our work, that we can make a decision at headquarters, and it wasn’t translating.
What needed to happen, let’s say, on the ground in one of our countries, and then only months after the fact, someone would say, “I never understood why. Why we did that!” So, I said, “The why is really important.” Once I had explained it, it was well understood, so “Let’s make sure we’re doing this in everything we do.”
So, I want to make sure the internal communications… like we’re changing a policy,…we’re going in this direction, but explaining to everyone why it is happening. So, we always take a step back to make sure that it’s well understood, and then we do surveys to make sure that it is understood.
Denver: Otherwise, it just becomes an activity for them, and they’re checking it off their list. When you give them the why, they understand the outcome and the impact of that activity, and they realize that… they are more engaged in doing it. They’re more energized because they can see what their work is going to mean to the ultimate outcome in helping the people that you serve.
Susie: And again, they had a part in it.
Denver: They had a part in it.
Susie: They were involved in it.
“Our vision as we go forward is far reaching. Yes, we want every cleft-affected person, no matter where they are in the world, to have access to safe, high quality, comprehensive cleft treatment. That’s a lofty vision, yes. It’s going to take us years to get there, but we’re not going to stop…
Denver: Yeah. I think it’s all wise because it’s an investment of time that you have to put upfront in order to get the long-term dividends, and sometimes I think organizations are just too hasty… so let’s go down the list, and it doesn’t pay off.
Well, your 25th anniversary is coming up. Can you believe it?
Tell me if you have any specific plans for the 25th, and also what your vision is for the future of Smile Train.
Susie: It’s so exciting. So yes, next year, 2024, will be our 25th anniversary.
Denver: Is there a date for it? A specific date?
Susie: Well, it will be celebrated the whole year.
Susie: Our actual anniversary is in January, which is when Smile Train was founded, so we will have a whole year of activities of speaking of our impact over the 25 years. We will be coming very close to that 2 million patients treated, our 2 million beneficiaries.
Denver: What a milestone that is!
Susie: So, that is a milestone, which we will most likely be celebrating next year. It gives us a lot to look forward to, and we have had tremendous growth, especially as you said in these last few years… not just the size of the organization, but the breadth of our work, and I think the team is just so excited and proud of what we’re doing. Everyone works tirelessly. We have the most amazing team at Smile Train, but it’s also our partners; so it gives our partners a lot to celebrate.
Our vision as we go forward is far reaching. Yes, we want every cleft-affected person, no matter where they are in the world, to have access to safe, high quality, comprehensive cleft treatment. That’s a lofty vision, yes. It’s going to take us years to get there, but we’re not going to stop, and we’re going to keep doing it and doing what we do. I think the success of our model just speaks to our impact, and we’re still challenged by our work and inspired by our work. So lots of good things to celebrate next year, and to be proud of, to be really, really proud of.
We’re 25 years in, so when you think of some of the babies that we treated, they’re now young adults, even adults, and they understand just how their lives have changed through Smile Train.
Denver: That’s sweet, and I think that sometimes these anniversaries are good to take some time to look back because I think most nonprofit organizations are always looking at all that they haven’t done and all the work that still needs to be done, and that can be debilitating to a degree unless you turn around and see how much you’ve accomplished, and that is the thing that provides you with the energy to say, “Okay, let’s look ahead.”
Susie: “Let’s keep going.”
Denver: But we often don’t do that. We’re always just sort of focused on all these that we haven’t reached yet. But no! Be proud!
Finally, Susie, let’s talk a little bit about impact, as you mentioned a moment ago, and we need to convey that impact through stories.
You have seen countless stories, no doubt. Share with us one that really left an impact on you.
Susie: Oh my goodness, Denver. I have the best job in the world. I get to visit so many of our partners and meet with our patients, and each one is a special and unique story.
I was just in Togo in West Africa, so I’m going to go there because that’s where my mind did take me, I was just there a few weeks ago.
There’s such a great need of care still in Togo, so we have a lot to do there. I met a young mother who had twins, twin baby boys; both had cleft. One had a bilateral cleft, and the other a unilateral cleft. So, the partner hospital I was visiting, they were still untreated. She had just presented at the hospital a few days before I arrived there.
She was doing everything in her power to be able to feed her infants so that they could survive. One of the social workers at the partner hospital had identified them in their village and brought them to this partner hospital for treatment, so the young mother was there with her mother. So, I met the mother and the grandmother and the babies, and I got to hold them.
So, they were on a nutrition rehabilitation program because they have to be rehabilitated to a healthy weight to have surgery, but the surgeon was explaining to me how hard this mother was working to be able to express milk to be able to feed the babies, and she said they’ve come a long way since they’ve been at the partner hospital, but they were malnourished. And it’s because of cleft and that inability to feed properly, so you express the breast milk, but then you have to feed with a spoon because the babies are just not able to suckle.
So, it was just lovely to see the young mother and their grandmother there. No father when the babies were born; the father took off. Who knows after treatment if they’ll be able to reconnect.
Denver: Reunite, yeah.
Susie: But when I was with the mother… she was young, and I said to my colleague, How old is she? How old is the mom? And so my colleague spoke and it came back: She’s 17.
Denver: Oh my goodness.
Susie: And my daughter just turned 17 on Monday, and I knew when I was with her that she just reminded me of my daughter, just her demeanor, and I knew she was young. And it’s just amazing that she couldn’t speak to me; she doesn’t speak English, but she knew what was happening, and I wanted to be able to say, “You are going to be okay. Your babies are going to be okay.”
Denver: Does sound like the greatest job in the world, and it’s hard to believe that you have nearly 2 million stories.
Susie: It is, and you know when I talk about this thing, I’m getting teary-eyed.
Denver: I’ll change the subject and ask you this.
Susie: I love what we do.
Denver: Yeah, that was a wonderful story to share with listeners before I ask you this question.
How can individuals support the mission of this organization and make a contribution if they should be so inclined?
Susie: You can find us obviously at smiletrain.org, where you can donate through our website. That’s our main website. We’re on social, all socials, so Facebook, Instagram, Twitter. Just put in Smile Train, and there’s the ability to donate there as well, and we would be grateful for continued support of our cleft treatment programs around the world.
Denver: Fantastic. Well, thanks, Susie, for being here today. It was a delight to have you back on the program, and so nice to see you again.
Susie: It really was great to be here. So good to speak to you, again, Denver. Thank you.
Denver: Thank you.
Denver Frederick, Host of The Business of Giving serves as a Trusted Advisor and Executive Coach to Nonprofit Leaders. His Book, The Business of Giving: New Best Practices for Nonprofit and Philanthropic Leaders in an Uncertain World, is available now on Amazon and Barnes & Noble.