Partnering with Donors and Doers with the END Fund

Featuring Ellen Agler, CEO, the END Fund and Tsitsi Masiyiwa, Co-Founder & Chair of Higherlife Foundation & Delta Philanthropies

Ellen: [00:00:35] So I think for me it's like, what is the evolution of how we work with communities to end these diseases and how do we support frontline community health workers? How are we supporting the government national strategy. But also on the other side, how are we supporting philanthropists journeys and whether it's their learning journey, how they want to collaborate, what specific disease or country they want to work in, and being able to be that nexus or really tailored ways of collaborating that make people where they are. [00:01:05][30.1]

Tulaine: [00:01:12] You're listening to System Catalysts. Each week you will hear personal stories of change makers who are bringing more inclusive connective system level solutions to our most persistent challenges. I'm Tulane. Montgomery. I love today's episode because we are focusing on two groups that we haven't directly tackled this season apart from your leadership. I'm talking about people who can also make or break your organization, your donors and board members. Philanthropic engagements can feel transactional. You give me money and I give you an outcome report at the end of the quarter or year. That approach misses the opportunity to interact with donors in a way that they are actually part of the solution. What organizations often don't know how to best collaborate with their donors and board members? This is definitely not the case when it comes to the end fund. Ellen Agler, their CEO, sees her job as a supporter of everyone involved with the organization. And when I say everyone, I mean everyone. The End Fund is an organization that mobilizes resources to end neglected tropical diseases or ntds in Africa and Asia. This group of diseases most common in low income populations are called neglected for a reason, even though they have the potential to kill you. Many are asymptomatic and have long incubation periods. What's worse, most people don't even know they exist. Since the end fund start over a decade ago, 600 million fewer people require treatment for Ntds. In today's episode, we'll learn how involving and supporting board members and donors in addition to community based organizations can have an exponential impact. In this episode, Ingersoll spoke with our guests Ellen Agler and Sid Sema someone. [00:03:30][138.1]

English: [00:03:33] Ellen, I'm really excited. Me, too. I have a lot of questions for you, so I'm just going to fire away here. You've worked in this space for how long? 20 plus years. [00:03:47][13.2]

Ellen: [00:03:48] So I started just over 25 years ago working in global health. [00:03:52][4.1]

Tulaine: [00:03:54] Even though Ellen had been working in the social sector for a long time. She actually had a previous career as a journalist. She began writing for newspapers as a teenager. By the time she was in college, she worked at a weekly newspaper in Idaho. [00:04:07][12.9]

Ellen: [00:04:08] I was getting attached to my stories, and that was the funny thing, because I. Yeah, I do. I just get vested in people's lives and the issues that they're facing. And so I did an article on the Idaho Commission for the Blind, and they were going bankrupt and they didn't have enough volunteers. And so I ended up volunteering, reading books to the blind and recording books so that they could they didn't have as much technology as they have now in terms of textbooks or I was doing a story on the influx of Bosnian refugees to Idaho and other mountain states, and I ended up volunteering to just help some of the refugees do grocery shopping and tutor their kids. And I had an editor say, I don't know, Ellen, you're you're you're maybe you need to be a part of the story instead of just covering the story. And I thought, that's probably true. And I grew up with my dad was in the Air Force, and we moved around a lot. So I think I just the global perspective was just embedded in me. I lived in lots of different parts of the United States, lived abroad. And so that just sense of openness about other places and other cultures and other ways of thinking. And so I started looking like, okay, maybe I'll do something for a couple of years that's more in the humanitarian space. [00:05:21][73.0]

Tulaine: [00:05:23] Ellen joined Operation Smile, a nonprofit that provides surgeries to children with a cleft lip. [00:05:28][5.2]

Ellen: [00:05:29] It could be completely transformational to the trajectory of their lives. And I think after two years I realized, oh, this is not just a two year hiatus till I get back to journalism. This is what I want to do for the rest of my life. And since then, it's been just really loving. How global health is this intersection of. Really clear impact on people's lives, but it's at a significant scale and I really like complex problems that need a great degree of partnership and need for a lot of organizations to come together around a common vision rather than just working in a silo. [00:06:07][37.9]

English: [00:06:08] Tell me a little bit about how you went from the sort of moment of like, I actually want to be part of this story. I want to be a passenger on this journey of global health to where you are now with the end fund. [00:06:20][12.2]

Ellen: [00:06:21] I was working with Operation Smile, the time when the End Fund had a recruiter for looking for a CEO. And I think they reached out to me like, do. And, you know, recruiters like, do know anybody who might be interested in this role. Also, would you be interested in this role? And I thought, no, I'm really happy with what I'm doing. I felt like you're growing our global programs, having a huge impact. But when I read the job description, thinking, who can I forward this to? I was like, Wait a minute. I've studied public health and international development studies. I've worked in 30 or more countries at that time in hospitals and in communities, and I don't know anything about neglected tropical diseases. [00:07:00][38.5]

Tulaine: [00:07:01] Neglected tropical diseases or Ntds are a group of parasitic and bacterial infectious diseases. [00:07:07][5.8]

Ellen: [00:07:09] And this is telling me that there's a group of diseases that over a billion people need treatment for that I've never heard of. Like I felt shocked. And how could this be? And where is the attention on this issue? So I think I just said, well, maybe I'll have a couple conversations and that lets more interest. And then here I am sort of. I think at the time I really thought that I wasn't really suited for the role. I had a little bit of a imposter syndrome, like I'm in my late thirties, I'm not ready to be CEO, but someone good should be CEO. And I took this time it was like, I'm looking forward to speaking with the founders of this project because it is so great to think about. How do you create a collaborative fund around a broad issue to fund an entire sector rather than just create a single organization to kind of try to do it their way and solve the whole problem, which I'd seen many times over? And I think literally from that just passion of how can I be helpful to this, even if I don't end up being involved, led to some amazing conversations. And the End Fund wasn't even a registered entity when I joined, so it was really like a risk. And some people were like, Why are you leaving operations? Miles To join some organization that has no name, no reputation, doesn't even exist yet. And I realized, well, I actually have a passion for that, like 0 to 1 innovation journey and how do we create something new? And I think because I'd seen so many flaws in the lack of collaborative platforms for partnering in that the ability for people to just get around a common mission and put their friendship, Walker says, Like put your ego and your logo aside. And the idea of having the opportunity to do that and support a space where there was very little private philanthropy and very little public attention, it just seemed like it was a space where there could be something built and it was worth a try. [00:09:05][115.9]

Tulaine: [00:09:10] Allen became the CEO of the End Fund in 2012. The organization was founded that year by the Legatum Foundation with an initial $10 million investment over a five year period. At the time, collaborative funds were a new model. Their intention was to connect a network of donors who could come together to work toward a common goal. [00:09:31][20.9]

Ellen: [00:09:32] And fund was This had two hats. We were a grant maker, but we were also a fundraiser. So I had been in that space before. It's like people go to where the platforms are, where philanthropies collaborate and see how they're thinking about scale and impact and measurement. [00:09:47][14.9]

Tulaine: [00:09:50] One of these platforms was the Global Philanthropy Forum, a conference that brings together philanthropists tackling global challenges. [00:09:56][6.5]

Ellen: [00:09:58] I remember leading up to that first day reading all the bios of who was going to be at that conference. When I read the list of who were the jurors of the prize. On that list was stride. Massive African. African philanthropist. Fascinating. [00:10:17][18.7]

Tulaine: [00:10:19] Strive Masiyiwa is a Zimbabwean businessman and philanthropist. [00:10:22][3.0]

Ellen: [00:10:24] And I knew that Zimbabwe was one of the priority lists that come up with the endowment potentially working it. And so I felt like I did a lot of this beginning at the end fund, just like boldly going up to people like, can I talk to you about the work that we're doing? Or someone from the Hilton family actually introduced me to drive and and I just remember him like deeply, thoughtfully listening to the story. And you're doing work to help improve the lives of Zimbabweans. And then and he sent me an email like a few days later saying, well, don't need $200,000. That was like the first donation that I got. And I knew that fundraising was my top priority. And I unfortunately thought at the time, great, this means I'll be able to fundraise from lots of African philanthropists. This is a sign which actually is, as you know, not that easy. The masses are one in a million, but it was a great moment to me. I really appreciated that I had such openness and positivity among a community of philanthropists. [00:11:20][56.2]

Tulaine: [00:11:22] With that initial $100,000 donation. STRIVE began learning more about Ntds and their impact in his home country. So did his wife Susie were. [00:11:32][10.0]

Tsitsi: [00:11:33] I went on a journey to discover. So what is the end fund and what does it do? And what are these neglected tropical diseases that they are tackling? [00:11:42][9.2]

Tulaine: [00:11:43] That's it. [00:11:43][0.4]

Tsitsi: [00:11:44] And so that's my was how I got involved. And I'm so glad. Just a defining moment, I have to say. [00:11:50][5.9]

English: [00:11:51] Before meeting Ellen, I hadn't even really understood or knew what Ntds were. And I think that that's definitely true for a lot of my peer group and a lot of people, you know, even in the philanthropic space that I associate with and talked to. It wasn't something that was just on the radar. And I think one of the beautiful, amazing things that End Fund has done is educated a massive amount of people on what these are and why it's so important to address today's. And so from your perspective, what what are neglected tropical diseases and why are they so important, especially in the geographical areas that you work in and that in fund works then? [00:12:31][40.3]

Tsitsi: [00:12:32] Okay. So I share the same experience as you that my first experience or awareness on Ntds. Wise sometimes is a young child going into the rural areas or looking at newspapers and seeing children with extended tummies. And then also noticing that the number was decreasing and not understanding the connection between the two. So once I started being part of the NTD community, that's when I become aware that there are diseases of poverty that have existed for a long time that affects communities where people can end up feeling isolated because of the manner in which the physical manifestations of the diseases and how they adversely affect movement, lives, skin blindness, etc.. [00:13:30][57.9]

Tulaine: [00:13:33] Ntds affect more than 1.7 billion people, including more than 1 billion children. [00:13:40][6.8]

Tsitsi: [00:13:42] The way in which the disease is manifest, I think causes a lot of isolation and disconnection between those affected and the communities in which they live. So because it's a disease that has existed for so long and also it's it's a slow death process. You find people don't pay as much attention to it. So those who are affected, say, by river blindness or bilharzia or intestinal worms can have those diseases for a long time and continue to suffer without anything being done because they're not as obvious and as evident as communicable diseases where the risk of infection is high and therefore the awareness to do something quickly is much higher. [00:14:36][54.1]

Tulaine: [00:14:37] Even though Tootsie and her husband Strive weren't too familiar with in deeds, they could identify with the experience of losing people to a disease. [00:14:46][8.2]

Tsitsi: [00:14:47] In the nineties, we know the pandemic that the world faced was the HIV and AIDS pandemic. And like everybody else, many people were affected directly or indirectly. And my awareness was first by just seeing my classmates begin to lose weight and waste away lecturers. And then closer to home, where my very close until I loved so much, had eight children and she lost all eight from HIV and AIDS. So seeing people I loved so much, I went into a period of deep despair and searching What can I do? Given it is a global problem and that requires a lot of knowledge and resources and what have you to tackle. And I have to say, we were on the same journey as my husband because he was also losing his staff, many of his employees with the construction company. And we were seeing so many of our staff members dying like children behind. So we got thinking and discussing on what can we do? And our low hanging fruit was education that the least we could do was provide through the limited resources. We had education by giving scholarships to the children that had been left behind. [00:16:05][78.1]

Tulaine: [00:16:09] This is How to See and Strive founded the Higher Life Foundation in 1996. Since then, they have been supporting vulnerable and orphaned children. When they met Ellen, they were interested in funding the end fund, partly because they saw something special in her. She made them feel included. [00:16:27][17.4]

Tsitsi: [00:16:28] And personality was a big draw because from that initial interaction she pulled back and began to give us updates on what she was working on, the team that she was building and the resources that she was mobilizing to get started on the fund. So the major attraction, apart from here, targeting Zimbabwe, is one of the countries that she wanted to do work in was approach as a leader. You know, for me, English, everything rises and falls on leadership. That kind of leadership was very passionate and yet very practical in a very practical way. Extremely committed and excited about doing a very difficult job, which was, number one, to bring awareness to diseases that are neglected. And then number two, to mobilize the resources that we needed at that time. No one spoke about neglected tropical diseases and governments didn't talk about them. Communities didn't really they suffered the most. But I think it was suffering in silence because the resources way allocated elsewhere. [00:17:42][73.7]

English: [00:17:43] Absolutely. I really I love what you just said city about leadership and how it is just one of the most pivotal factors. And in your mind, in your experience, what is the relationship between leadership and systems change, especially with what you see into the end fund? [00:18:00][17.5]

Tsitsi: [00:18:02] When I look at systems change, there are a number of key components that I consider to be very important. Number one, it has to do with understanding the root cause of the problem. So instead of focusing on symptoms, it's going to the root. Then number two, taking a long term view on how to solve the problem. Number three, mapping out the stakeholders that are critical in dealing with the root causes and solving the problem. And when you look at the work that they in fact is doing, they have been very successful, I believe, in addressing all those components. Despite the fact that the End Fund is an organization that was born out of a burden that Global North philanthropists had, there was a realization that it's a shared burden and that we had to, as we do the stakeholder mapping, to play on each other's strengths, to ensure that whatever solutions one would come up with, they were co-created solutions and at the center the community would be empowered. [00:19:15][73.1]

English: [00:19:16] Anyone in my mind has set the bar of what it looks like for people to come together, communities, philanthropists, governments to come together and collaborate to really solve a complex problem. So do you have a favorite memory of your time with the End Fund, a favorite trip, a favorite moment that you can think of? [00:19:36][19.1]

Tsitsi: [00:19:37] There's so many, I think, special memories for me. But the most profound one for me was Nigeria, where we went into. An area, one of the, I think, the harshest places for anyone to live in. You know, terrible levels of poverty and to see the way of life. It was literally a slum was heartbreaking. But the model we have is we go where the people are. To see that MDR is a mass drug Administration is actually held in those areas where some communities. Advise their children not to come in because of the fear of the diseases that you confront when you go into those isolated places. For me, that was heartbreaking on one hand, but also very humbling in that if you're talking to an investor or a partner who has put in their financial resources or their skills and you showed them the extent to which we are literally reaching their last mile and reaching to people who are the most neglected of neglected. You see that the infant is not just it's not just an acronym to end the diseases, but that desire to end is embedded in the work culture and the ways in which the team members what they are committed to these communities. They're not afraid to go at the local communities, fear to go to speak to people who are affected and to administer the drugs that are so needed to ensure that they have some degree of relief that they so desperately need. [00:21:30][113.3]

Tulaine: [00:21:33] As you can hear, Sesay is intimately connected to the end fund and their mission. But like many organizations, the End Fund didn't immediately prioritize the inclusion of proximate leaders in their team. It all started with City. [00:21:47][13.3]

Ellen: [00:21:48] She's just so connected to community that that was really important. [00:21:51][3.2]

Tulaine: [00:21:53] That's Ellen again. [00:21:53][0.6]

Ellen: [00:21:54] Because at the time, like she was our first African board member and now I think we've got multiple African board members from different places in the continent. But I don't think that we thought at the time that the fund was set up. It wasn't like. How are we thinking about representation and how are we thinking about proximity? And it was really I remember like, it's okay that we're a New York based organization with mostly funders from U.S. and Europe because we're just going to be funding proximate partners and we won't even use that terminology that we're going to whoever the best local organization is, whether it's an NGO, technical partner or research partner or the government directly. So I feel like it's just been this learning journey. I'm not actually on the board. Sometimes CEOs serve on the board, but I feel I'm in service to the board and in service to the team and management. So it's sort of like I do hold a nexus role even between board and staff and our external partners. And holding that matrix in that vision for how these partners can collaborate. [00:22:58][63.9]

Tulaine: [00:22:59] Besides supporting board members, Allen also pays close attention to donors. [00:23:03][3.6]

Ellen: [00:23:04] Different funders that joined us in the early days had no experience with Ntds, and now it's like a major pillar of their strategy. So I think for me it's like, what is the evolution of how we work with communities to end these diseases and how do we support frontline community health workers, How are we supporting the government national strategy? But also on the other side, how are we supporting philanthropists journeys and whether it's their learning journey, how they want to collaborate, what specific disease or country they want to work in, and being able to be that nexus for really tailored ways of collaborating that meet people where they are. [00:23:43][38.8]

English: [00:23:49] As a philanthropist in public health, I want to tell you about an organization that has made a profound impact on the lives of young people in South Africa. It's called the Charlize Theron Africa Outreach Project, and it was founded by actress and philanthropist Charlize Theron in 2007. Scope believes in change that is locally led through partnerships with community based organizations. CTA LP helps advance the sexual and reproductive health and rights of young people, as well as prevent gender based violence. To learn more about how AOP creates lasting change through their partners, we hope you listen to our episode featuring Kasi n Network on Violence Against Women with their founder, Cookie Edwards. You can also visit Charlize Africa Outreach dot org. [00:24:39][49.6]

Tulaine: [00:24:43] In order to align everyone toward their mission to end Ntds Ellen prioritizes making connections and thinking innovatively. [00:24:50][7.1]

Ellen: [00:24:52] I think that that mindset of flexibility and innovation is central. Otherwise, who would we be like? We would just be another organization trying to do things our way. We talk about how the End Fund supports partners to treat over 100 million people per year in 25 or more countries, But I think that's what the impact that's like us making grants and providing technical assistance to a group, but then also us holding convenings, us doing advocacy. Where are the gaps and that we can help fill? Or where's the white space where you can design another aspect of the sector? Where are the dots between people that you can connect? Where might there be research in one part of the world that would be really good for another part of the world to be able to engage with? Like, how do we bring global expertise, local expertise together? So I just think it's been an evolution of like, how can we be most useful to these goals of eliminating the set of diseases that have been around for thousands of years, that we actually have a chance in the next decade reduced by 90% if we stay on track with our goals. And since I started 11 years ago, 600 million less people need treatment because we've proven the disease is no longer circulating in that environment. We've reached elimination goals. I mean, it's been embedded completely into the health system. Any surveillances in place so that it's not a public health problem anymore? [00:26:25][93.4]

Tulaine: [00:26:26] Suzy has witnessed this change. [00:26:28][1.3]

Ellen: [00:26:29] So you see the impact in that if you go into an African country, whether it's Kenya or Ethiopia or Zimbabwe, you will not see children with extended stomachs. You see less than people who are actually afflicted by river blindness. The infections of because they are much lower weight because of the consistent way in which the disease has been tackled over the last decade. If you look at the way the infant is selected, partners, community leaders will implement the work on the ground. They have chosen community champions who? Have literally laid down their lives to be able to reach the unreached and to ensure that the treatments that are so desperately needed get to the people that need them. And if it wasn't for the fund's role, I believe in just carefully selecting the right partners to do the implementation on the ground. I think we would not be able to witness the kind of impact that we have seen. [00:27:35][66.0]

Tulaine: [00:27:38] Achieving such impact isn't just about having the right partners. It also requires a certain kind of leadership for Ellen. It has to do with being vulnerable and listening to others. [00:27:48][9.8]

Ellen: [00:27:50] I just had a conversation with a colleague about how do you as a leader, get more honest feedback about how you're doing. I was like, Well, sometimes you can't just ask someone who reports to you. Okay, do any feedback for me at the end of your check in? Anything I could do better? It's sort of like off putting for their friends. I don't know how I should be criticizing my boss, but I was like, How about we try? Start with. Here are the three things that I think I didn't meet my own expectations on this week that may have affected you. Like, here's what I do. What do you think? Like, you almost have to, like, name your own flaws first as a way to start the conversation so that you are offering it up. And I do think, like, in a way, I'm like, Am I doing it or not? My naming my own mistakes, naming my own flaws because it gives other people around me permission to do so. Yeah, we just had an exercise where we have that in our organization. We do multi rater reviews where you have maybe 5 to 7 colleagues that can input and feedback. But for anybody who's at the senior leadership team, everybody in the organization can give you feedback. And so you can get things like 40 pages of comments that some are glowing, some are complicated, some are like, Where do I hold this? And and we just had a retreat. Or it's like, okay, let's like, share the most difficult feedback that you got. Like, share what you learned that you want to lean into that's positive. And also, let's be super open with each other about how this is a tough area that I need to work on this year. And I want you as my other colleagues to hold me accountable and help me support because we all have blind spots. Oh my God, we all have big blind spots. And if we don't admit that, we aren't being true to ourselves. And so and we need others around us as mirrors, as walls down open collaborators and communicators to kind of check us. Yeah, somebody told me this before taking on this role that, like, you're going to realize something called the CEO bubble, which is no one will tell you the truth anymore because they're positioning and it's one of the loneliest jobs you'll ever have, if not the loneliest. I was like, No, that can't be true. I'm very I'm approachable. But then actually, I don't know if you Arthur Brooks, is someone that I collaborate with on the Legatum world. And he's always like, Yeah, and he was the head of a think tank. He wrote this study about how the number one thing that CEOs want to do is spend time with their employees, like get to know what's going with the team and really spend time and hear directly. And the number one thing that employees don't want to do is the CEO. Yeah. [00:30:18][147.9]

English: [00:30:18] I've heard that. Yeah. [00:30:20][1.2]

Ellen: [00:30:20] Sure. Because then how are you getting access to You have to be so conscious about like I created a CEO listening to it, which is like just anybody can, you know, just kind of go through the organization and just, like, give a platform for time because no one's going to reach out. Yeah, especially as we get bigger. Unless I'm the one building that bridge. And I would highly recommend that anybody just an intentional listening tour beyond the normal people that might report into you just to get a feel for and a listening tour of your broader sector. Are you are you hearing enough of the perspective outside of your own organization? [00:30:55][34.3]

Tulaine: [00:30:59] And now our Rapid Fire segment. [00:31:01][1.8]

English: [00:31:04] Is one word to describe your journey as a systems analyst. [00:31:08][4.1]

Ellen: [00:31:09] Transformational. [00:31:09][0.0]

English: [00:31:11] Tell me about one of the most gratifying moments that you've had along this journey. [00:31:17][5.8]

Ellen: [00:31:19] I'm thinking about a little girl that when I was with Operation Smile, we met in the Philippines and had a huge facial tumor. So ACL, that was like a herniated brain tissue. She found me on Facebook. Wow. 15 years later, she found me on Facebook and she was like, I just want you to know. You say, Mam, Ellen, mam, Ellen, I'm married now and I have a baby. And it wouldn't have been possible if I hadn't met you. And it was so touching to me. You just don't know what seeds you're planting and how we can have a profound effect on each other's lives by showing up, by not saying it's someone should do something about that problem, but I should do something about this. And I think that that's been the story of the end fund. Like Legatum read about neglected tropical diseases and a Financial Times article. And I always think about like they're reading that and they could have been like, Oh, that's terrible. Turn the page to its next article. But instead they were like, Oh, that is terrible and someone should do something about it. Maybe that somebody that's. [00:32:25][66.5]

English: [00:32:26] Yeah. What keeps you up at night? [00:32:28][2.0]

Ellen: [00:32:29] I think, honestly, the overriding thing that keeps me up at night lately is enthusiasm. Mm. You had this event with, like the U.N. and diplomats and philanthropists and from the entertainment and sports world, and it just felt so energizing and like, it's not a time in the day to follow up on all the ideas. Mm. [00:32:48][18.6]

English: [00:32:49] One piece of advice for the next, Ellen Agler, the Future Systems Catalyst out there. [00:32:56][6.7]

Ellen: [00:32:57] I think that when I joined the fund, I had never heard of the term Systems Catalyst or Systems Change Leader or, you know, systems entrepreneur. And now it's a field. And I think just to recognize how many mentors are out there, how many people would like to share this experience, how many, how many organizations are writing about this. And so just to reach out, because I think that the commonality is you are not going to do it alone. I mean, there's no way if you have your perfect idea how to solve the problem. There's no way that's you implementing it. Are you building a team to implement it? Is the way that you're going to change the system. So all of us learning to lead with a systems mindset and just elevate our view at which we're seeing problems and feeling the sense of confidence that we can fix things at that level, which I think is really daunting for a lot of people. But just to show the practicalities of no, here was step one, Here was the next person I met. There was a next thing that happened. Like, it's just it's possible. [00:34:02][64.9]

If you want to learn more about the end fund, head on over to end.org.