Transcript:
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Brad Caruso:
Welcome to Civic Warriors, brought to you by Withum. On this podcast, we bring the conversation to you, sharing, engaging stories that motivate and build consensus in the non-profit community. This podcast is about the innovators, the leaders on the frontline of adversity, guiding lights in the non-profit industry affecting change. And through their stories, we can all join forces to become civic warriors. Hey, warriors. Welcome to today’s episode of Civic Warriors. Brought to you by, Withum. I’m your host, Brad Caruso, leader of Withum’s not-for-profit practice. You know, in the not-for-profit community, there are multiple ways in structures to approach a problem. There’s grant-making, there’s direct community support, and there are ways to create multiple partnerships to address an issue for multiple angles. We often hear about the word innovation, and today I’m very excited that we’re gonna talk a little about innovation, how you innovate to solve a problem. Our guest today, Megan Golden, is the co-founder and CEO of the not-for-profit organization. Mission:Cure. Mission:Cure is a 501c3 public charity with a mission to improve the lives of people suffering from unsolved diseases. Through patient engagement, innovative financing, education, and research, Mission:Cure has developed an innovative model to fund research and education. So welcome to the show, Megan. We’re excited to have you.
Megan Golden:
Thank you for having me.
Brad Caruso:
So, I, I wanted to start out, maybe you can share a little bit about your backstory, a little bit about Mission:Cure, why you founded it, and then we can go into some of the strategies and things on the innovation side. I’m excited to talk about it.
Megan Golden:
Sure, so I’m trained as a lawyer and have been working in the nonprofit sector for many years. And specifically I was working on innovative financing for early childhood programs, and that financing involved bringing in impact investors and incentivizing outcomes. I was traveling around the country providing assistance to different cities and counties and states under a federally funded program to try to use this financing for their early childhood programs. When my brother Eric, who lives in LA got sick and he had just terrible, terrible pains in his stomach, his abdomen, he was extremely sick. He started to lose weight, sometimes he couldn’t get out of bed. And he went to a number of doctors, was diagnosed with all sorts of things. And then finally, after what’s called a diagnostic odyssey, was diagnosed with something called chronic pancreatitis, which is inflammation of the pancreas that’s extremely painful and is degenerative and causes a high risk of pancreatic cancer.
Megan Golden:
And we learned that we didn’t know why his pancreas was inflamed and there’s no treatment for it and nothing he could do, and that just was not acceptable. And so he and I were actually on a walk in the, the hills outside of Los Angeles, and we started thinking, well, I wonder if this type of financing that I had been working on to scale up early childhood programs might apply to cure a disease. And, uh, we, we kind of talked it over and then we had gotten to know some of the experts in the pancreatic research and clinical space through his involvement in the National Pancreas Foundation. And we spoke to them about this idea, and I spoke to the people I knew in the innovative finance space, and we wanted to raise a pot of funding and use it to improve very specific patient outcomes in a defined timeframe. And we got enough positive feedback that I quit my job and we launched Mission:Cure five years ago.
Brad Caruso:
That’s exciting. And I, I think in, in the beginning too, you worked with a fiscal sponsor, uh, early on. <Yes.> Uh, did, and then I think that helped you. How, what was that experience like? Just working with this fiscal sponsors? We
Megan Golden:
Had two different fiscal sponsors. So when we first launched, yeah, we were, we just had an idea and we were lucky to get a small grant from the National Pancreas Foundation, but we did not have any of the infrastructure in place to really run an organization. And so we started out with one fiscal sponsor that really was doing it because we were mission aligned and it was kinda, a favor to us. And then they decided to get out of the fiscal sponsorship business, and we moved to Global Impact, which is a larger fiscal sponsor that sponsors many nonprofits, and they provided those kind of back office operations as well as obviously our 501c3 status. And it was very helpful. It just meant that we could focus specifically on achieving our mission and on the programming and not have to build a financial system and deal with a lot of compliance issues.
Brad Caruso:
Yeah, without a doubt. And very, very common thing. I, I appreciate, I appreciate you sharing that because I think especially early on, and, and I think just based on your backstory, you know, you, you’re, you’re hyper-focused on, on the issue itself or on, on the problem you’re trying to solve. And, and then on top of that, having to deal with all the compliance matters and having to deal with all the back office things that, you know, at the end of the day too, you know, you, you mentioned that you left your former job to, to fully, fully dedicate to this, you know, fund funds are, uh, few and far between sometimes or they’re, you know, you’re constantly dealing with fundraising and other things, so you know that that’s, that’s great to share. And I, I like giving others out there ideas of they have an idea, they wanna get it off the ground, what resources are out there to help them. And I, and I think that’s, you know, one that it seemed like you took advantage of, which is great. Uh, and happy to hear that. What are some takeaways, and I guess this leads into, you know, how you’re effectively using your non-profit and the impacting investing model. You know, what are some of the things that you noticed about, I’ll say the, you know, healthcare system that you learned through this process that now you’re, you’re trying to help, uh, educate or solve?
Megan Golden:
One thing is that there’s a problem with incentives in the system, and specifically there really is not a part of the system that is incentivized to improve patient outcomes. In developing therapies for diseases the early research is conducted out of academic medical centers, largely some, some in the government, and it’s funded by government funds and some foundation funds, but mostly government funds, the National Institutes of Health and other agencies. And the, while everybody is doing that to try to help patients, that that’s their motivation. The incentives in the system are around, um, innovations in basic science and publications and the timeframes tend to be very long. And then there’s something that’s actually, uh, well known as the valley of death where promising ideas fall and go to die because in order to get the next stage of funding to actually take a therapy or a drug to the market, the funding comes from venture capital or pharma.
Megan Golden:
It comes, it’s private sector funding that really is incentivized to make a profit. And so in order to get that funding, and it takes a lot of money, often to get a drug tested and show that it works and bring it to market, you have to have a pretty good case that your therapy is going to produce. Many times in returns, I think five x at least returns from the investment and in between the basic science research and the idea generation and having a case that, uh, you can produce a big profit is this valley of death. And so you would think that if the incentives were around proving patient outcomes, that there would be kind of funding and support to get through that process. But right now, that’s not part of our system. And so there’s early funding that is, uh, kind of with more basic science and academic incentives. There’s profit motivated funding and there’s a big gap in the middle.
Brad Caruso:
Yeah, and that makes a lot of sense, right? I I, I think you know it makes sense at it at its core because it’s a complicated, it’s a complicated issue. And the perspective that there are a lot of different stakeholders in all of this. You have, you have patients, you have the individuals, you know, suffering from an issue. You have people like yourself that are trying to solve the issue. You have doctors as well, you know, around you that are also involved in on a variety of levels, working in hospitals, seeing these things, doing research, producing papers. They have their professional credentials on the line every time they produce papers. Then you have the financing structure, which comes from all different angles. And so I, I thought, I think, I think what we can, we can talk about a little bit more now, and, and I, and you use the word patient based outcomes, and I, and I think just working with you, part of your model in both the Mission:Cure world and the social impact world is that you’re looking towards patient based outcomes. Can you elaborate a little bit more just, just for our listeners, you know, when you say patient based outcomes, what do you mean by that? What, what is it that you’re trying to do and, and how are you doing that?
Megan Golden:
We want to make a difference in the lives of people affected by disease, initially chronic pancreatitis, but we believe that this model will apply to other diseases as well. The challenge for my previous work was in social impact bonds or sometimes called pay for success financing is how do you define those outcomes and how do you measure them? And so what we have done at Mission:Cure is one of the early things we did is survey patients about which outcomes are most important to them. And we learned the top four are pain, pain, pain and pain. But beyond that, there is kind of nausea and eating issues and fatigue. Um, those are kind of the, the top three. And so we define those outcomes and then we’ve been, uh, studied different validated measurement tools for those outcomes. And we are actually right now in the process of working with a whole consortium of researchers, doctors, and patients to really specify how to prioritize those outcomes and how to measure them. And then we are applying to the FDA and have been speaking to them about going through a process that makes sure that the outcome measurements are appropriate for clinical trials, that will be testing new therapies.
Brad Caruso:
Sounds very involved, you know, certainly a lot, a lot going on. And, and that’s, that’s a positive, you know, in that you, you talk a little bit about, or you, you mentioned the word social impact investing and, and you also mentioned earlier, um, you know, we have Mission:Cure as a not-for-profit, um, you know, not-for-profits I think serve a great purpose. You can bring in dollars, you can, you know, you can do your education part of your mission. You can fund initiatives, um, and you work with others to help solve the issue you’re trying to solve or to, to help further, um, you know, research and things like that. Um, but you mentioned social impact investing. Can you talk a little bit more about just the concept of social impact investing and then how your not-for-profit Mission:Cure is also interacting in that world to help in the bigger picture? I think that that would be a great innovation that you don’t always see or you don’t always hear. So I’d love to hear a little more about that.
Megan Golden:
I love that question. Um, there has been a trend among investors and particularly starting with the millennial generation who want their investment dollars to produce good for society in addition to financial return. So if, if it were a donation, it would be a hundred percent focused on, on the kind of social good, but this is their investment dollars and they want to invest them in things that are good for the world. And the shift in the mentality of investors has been really significant. Um, this kind of movement started in about 2010 when a Rockefeller Foundation, and I believe it was JP Morgan, came out with a report that predicted that this impact investing market would be 750 billion over the next 10 years. And actually, and so that got people really thinking and wanting to pay attention to, well, what is an impact investment? How do you measure whether it’s producing good to society?
Megan Golden:
And actually, um, I don’t have the numbers on the top of my head, but I did see something recently that the actual number has exceeded that over a trillion. I believe the dollars that the investors want to do good are there, and then the question is, well, what does that mean and what will they actually invest in? And the an, there’s a wide range of so-called impact investments out there from ones that are kinda bare minimum do no harm to something like a social impact bond or an impact bond where people are specifically investing their money to achieve specific outcomes. We really believe that given this trend that there are investment dollars out there that would invest in something that would cure a disease, but also produce a financial return and may even be willing to sacrifice, uh, little bit on the rate of return in order to achieve that outcome.
Megan Golden:
So that was our hypothesis and we set out to test it with Mission:Cure. And we were lucky early on to find a gentleman who actually has chronic pancreatitis who was looking to invest funding and heard about us and said, well, actually, if I’m gonna invest my money, I would rather invest it in projects that are gonna cure this disease. And so that was kind of our, our first impact investor that we recruited. And there was a separate company formed that was the beginning of investing in projects that might improve patient outcomes, but also potentially produce a commercial return. In the disease space there’s trend toward what’s called venture philanthropy. So disease foundations traditionally have given grants and mostly to academic institutions, and they have mostly done kind of the same long-term academic centered projects that the government is funding. So disease foundations kind of looked a lot like kind of an add-on to what’s much larger amount of government funding.
Megan Golden:
And, um, not that many years ago with the Cystic Fibrosis Foundation, some foundations started deciding to take the, the money and invest rather than just give grants with no strings attached. And the Cystic Fibrosis Foundation is the one that paved the way and has been extremely successful in both developing therapies and bringing in returns. And then a number of other disease foundations have been using that strategy as well. And so we’ve learned a lot from that movement. How do you structure the investment deals? What timeframes would work, what types of projects are appropriate and are kind of applying that to impact investing rather than charitable donations.
Brad Caruso:
Got it. Interesting. And I I, when you look at the activities of Mission:Cure, the not-for-profit and the activities of the social impact entity itself or the for-profit enterprise, how do they operate? Like in conjunction, what does that like in conjunction look like as far as what they spend money on?
Megan Golden:
Right. Completely different. Completely different. So pretty much all of our mission activities are the realm of the non-profit, kind of trying to develop a strategy, taking multiple shots on goal to try to cure this disease and improve outcomes for patients in 10 years. Education and community building, uh, a little bit of public policy work, improving the care model. All of that is our non-profit. And the impact investor has a very narrow focus on actually investing in promising therapeutic projects. That’s all that does. And on the non-profit side, we welcome any investors. I wish that there were a lot more investors in, uh, pancreatitis therapeutics and other, you know, therapeutics for other diseases that do not have treatments. And we’re happy to have that investor, impact investor or any investor invest in, in the projects that we’ve identified will advance a cure.
Brad Caruso:
Love it. And, and from the perspective of gathering more donations for Mission:Cure, helping, helping that. Cause how would someone donate to you if, if, if someone was listening to this and said, wow, this either personally affects me, cause I’m sure there’s someone that’s gonna listen to this, that, that, uh, what you’re helping with personally affects them. And there’s also people just understanding in general when you’re, when you’re researching or when you are trying to find outcomes to a disease or to a health complication, you know, everyone at some point in their life experiences this. So, uh, if I were to, if I were to ask you how do I donate to you? How would I do that? Is there an easy way to do that?
Megan Golden:
Thank you for that question. Um, I think the easiest way is on our website mission-cure.org and you can find out more about our approach there. And we’re also on Facebook and all the other social media.
Brad Caruso:
Yeah. And I, I, I, uh, I know in talking with you and, and we had a couple podcasts on this in the past on crypto donations, but I know you were, uh, you were definitely an early adopter of, of using, uh, a third party to help process, uh, receiving of digital asset donations. What was that experience like?
Megan Golden:
It was interesting. I think we’ve done it for one year so far, and we were able to get kind of more donations than we spent in getting on the platform. But what I learned in the process is that you really need to do crypto specific fundraising and marketing that just saying on your website, oh yeah, we also accept crypto is not enough. And we haven’t really had the capacity to do that. And then in addition, the crypto market has kind of collapsed in the process. So, you know, we’re still keeping that as an option going forward, but I’m not sure what this next year is going to look like.
Brad Caruso:
Yeah, yeah. I’ve heard, I’ve heard from many and I know a few, um, few that, that I will say, uh, immersed themself in, in that world, uh, that’s what it takes. And, and I know that’s, you know, part of it. Uh, and you mentioned before about, uh, what the next generation wants to fund or how they wanna fund. I mean, it is an, it is a component of it, but you know, I think you, you mentioned some things, I think just from my knowledge working with others, uh, you have to like really immerse yourself in that world. You have to, you know, go on the, you know, different platforms, uh, a lot of social media type conversations and, and you have to be involved in the right community or go to the right events or, or be involved in the right, uh, chat rooms and things like that.
Brad Caruso:
And it’s, you have to really identify those, find those, and then be involved. And then people have to have to believe that, you know, you are involved. So you’re, you’re not gonna, just, a lot of people, you know, didn’t necessarily want people to liquidate some of the funds. They wanted you to hold their tokens or they wanted you to keep those and then use those and then and reuse those so that you further their cause, which is, you know, using digital assets. So it, it’s an interesting, it’s gonna affect non-profits in weird ways in the future, and I don’t think we all know yet cuz it’s such a fickle market. <laugh>.
Megan Golden:
Yeah. One thing that, that I thought was very interesting is that the average size of the donations of crypto tend to be much larger than a donation we would just get on our website and that was our experience as well. We don’t know who made the donations, but they
Brad Caruso:
Were that’s the interesting part of it, <laugh>. Yeah. Yeah. And we had, um, I know, I know what we saw last year. So in December of 21 there was an extreme inflation in a lot of the token values and a lot of the digital asset values. And so people were, from a tax benefit perspective, were like, so I can just donate this to a non-for-profit. And they don’t worry about the tax consequence of all those, all those accumulated gains that they had. And, and that was, I mean, there was a massive incentive. I know in talking with a few of the, uh, organizations that processed the crypto donations, they, you know, they all said the same thing. Like, you know, this is the time. And they saw a huge windfall of donations which benefited the non-for-profit community. So it was, I mean, listen, it, I, to me it benefited the non-profit community, all the stuff that’s happening in the digital asset world. So what’s on the horizon for Mission:Cure?
Megan Golden:
Well, we have made some good progress on projects to develop therapies. We have been doing a lot of pitching of pharma companies and investors to work on developing therapies. And now we have probably seven companies working on pancreatitis therapies. And we helped Johns Hopkins launch the first pancreatitis pain research program there in the last year, which is exciting cause that’s something that’s actually improving patient outcomes now. But our focus now is on getting clinical trials launched because it’s not enough just to have people working on it. We need to really start to get these treatments to patients. And I’m excited that actually the, a clinical trial of a repurposed drug, a drug that was approved, has been previously approved for another condition. We just launched outta Georgetown University in the last few weeks, and that was with a researcher that we work with to get that trial underway.
Brad Caruso:
Oh, that’s awesome. Congratulations. That’s that’s great news.
Megan Golden:
Yeah. More to come I hope.
Brad Caruso:
Oh, definitely more to come. Yeah. And I’m sure you know, for all, for all of you out there listening, I mean, there’s, there’s a lot of opportunity to follow what, what Mission:Cure is doing. Um, definitely an innovative model and certainly, uh, you know, a mindset on patient-based outcomes and a mindset on, on really solving the issue itself. So Megan, I really, really appreciate your time today. I appreciate you sharing that information with us. Uh, a little bit more about the model you’ve created and about Mission:Cure itself and to, uh, to all my listeners out there you know, I really, really appreciate you, uh, listening in and, and, you know, just from my perspective, just remember that, you know, innovation is necessary to solve some of these issues. If you just did what everybody did yesterday. If, if, um, you know, you fall into that valley of death and can’t solve an issue, um, you know, you have to, you have to innovate, innovate.
Brad Caruso:
You have to find a new way to do it, and you have to find people that care about it. And you know, someone, someone like Megan here really cares about it. Her organization Mission:Cure really cares about it. And I hope you go out there and support them on, you know, check out their website and check ’em out. Appreciate your time, Megan, for, uh, spending it here with us today.
Megan Golden:
Thank you so much for having me.
Brad Caruso:
And thank you Warriors for listening. Make sure to subscribe, meet us right back here for another episode of Civic Warriors in the Future.
