The following is a conversation between Greg Lee, President & CEO of Livestrong, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: Livestrong, the cancer group founded by Lance Armstrong, has certainly been through a tumultuous period. As a result of the doping and performance-enhancing drug scandal that engulfed its founder, the organization saw its revenues fall from $46 million in 2011 to $6.2 million in 2015. But Livestrong has proven to be resilient, and revenues are slowly making their way back up, and its essential work continues. And this is all being led by my next guest. He is Greg Lee, the President and CEO of the Livestrong Foundation.
Good evening, Greg, and welcome to The Business of Giving!
Greg: Thank you very much, Denver. Glad to be here.
Denver: There are quite a number of cancer organizations across America — national, local, some international. What is unique and distinctive about Livestrong that helps set you apart from those other organizations?
Greg: You hit on a very valid point. There are some 35,000 public charities that declare cancer as their choice or their issue and topic of choice. The thing that is unique about Livestrong is we focus not on the disease, but on the person who has the disease. And our initiatives and our programs and our efforts are aimed at the individual, the patient, the caregiver, the family, and all of those that are dealing with the disease. We leave the science and the biology and the medicine to the doctors and those who really know more about it than we do.
Denver: That’s a nice focus. Well, there are certainly risks when an organization is so closely tied to an individual as Livestrong was with Lance Armstrong. So, when that individual’s reputation takes a hit, so does the reputation of the organization simply because the public associates the two in their mind. How did you and the board deal with this? And what steps did you take to address it?
Greg: Very valid point, Denver, and you make a perfect example. We were about not just cancer, about fighting the disease, but we also had a celebrity as a namesake, and you rise and fall with that celebrity. I think the thing that we began to focus on was to realize that this was not about the bike. It was not about a guy in a cycling career. It’s about cancer and millions of people around the country and around the globe that are fighting through that disease. And quite frankly, what we found is that they don’t care about what a guy did on a bike five or six or seven years ago. They call today because they need help. They’re visiting the website today because they need help. And they know we will provide that to them. So, I think the biggest thing that we did was begin to focus on the patient. In fact, if you’d look at our organizational chart, it has the patient right in the center, and everything else surrounds that. It’s all with the patient right in the middle of things.
I think sometimes organizations can get caught up in being bigger. They get caught up in trying to do more, and not focusing on doing better.
Denver: It becomes your mantra. That becomes your entire focus. Well, many nonprofits are going to be faced, at one time or another, of having to cut staff and sharpen their focus around those programs that are essential to the core mission of the organization, and you certainly have had to do that. I know you had staff of about 119. You took it down to 35. What lessons have you learned, Greg, taking on this difficult assignment and doing so in a very effective way?
Greg: I think sometimes organizations can get caught up in being bigger. They get caught up in trying to do more, and not focusing on doing better. To give you an example, our revenues at one point in time maxed out at $50 million plus or minus. Yet today, with revenues that are 15% or 20% of that size, we’re serving more than we ever have. We’ve gotten leaner and meaner and more efficient and more effective. And again, I think sometimes, people get so focused on bigger and faster that they don’t think about, “Well, how can I do it more efficiently? How can I do it more effectively? How can I be more focused?” At one point in time, we had 26, 27 programs. Today, we have five. And we do those five really, really good, and we provide high- quality, comprehensive care to those people who need it in those five areas, and we let others take care of those other surrounding programs. And so I think, for us, it was an exercise in focus and on quality, not necessarily just quantity.
Denver: Yeah. This crisis has actually made you probably a better organization in so many different ways. Well, I want to discuss those programs in a minute. But first, tell us how many Americans are currently living with cancer? And how has that picture changed for survivors, let’s say, compared to what it was a decade or two ago?
Greg: Right now, there’s about 15.5 million Americans that are going through a cancer diagnosis. And when I started in this field 11 years ago now, the number we always talked about was 10.5. And then it was 11.5. And then it was 12. And then it was 14. And now it’s 15.5 million. And you don’t have to be a real math major to figure out that, “Okay, well that means in the last decade, it’s gone up by one-third”. I think people are living longer. Their life expectancy is longer, and as a result, more are being diagnosed. The stats used to be 1 in 3 people. Now it’s really about 1 in 2.4 people are going to be diagnosed with cancer during their lifetime. And so, those are the facts that we’re dealing with.
Denver: Every individual and family, of course, is very, very different. But is there a somewhat typical trajectory that people go through when they hear the words “You’ve got cancer” for the very first time?
Greg: There really is. Understand, we help north of 300,000 people a year, and yet I can almost put these in certain phases. The first thing that usually happens is just shock. They almost feel like they’ve been hit upside the head with a 2 x 4 or something. I call it the whack on the side of the head. And they feel that way. And usually they feel that way for sometimes a period of days, sometimes a period of weeks, depending on their stage of diagnosis, et cetera.
But then, the second phase is usually, “You know what? This is my life and, Dang! I’m going to do something about it.” And so there is kind of a recovery phase that they come out of where there’s energy. There’s motivation. There’s inspiration that says, “Hey, wait a minute. It’s my life. I’m going to live strong. I’m going to take control of it.”
I guess the third phase is “I’m going to find out everything I can.” So there’s this education process, and there’s this learning process, and it’s acting like a sponge to soak it all up. And then the next phase is probably one that says, “This is hard as hell. I’ve learned a lot. I know a lot,” but there’s kind of a back to reality that says, “Yeah, I’m motivated. I’m inspired, and I want to take control and I’ve got a lot of information.”
Denver: But this is tough.
Greg: This is tough. It still doesn’t make it easy. So, once they are back in that reality, then they kind of level set, and they’re really mature. They’re balanced, and they have kind of equal parts of motivation, knowledge, awareness, and they’re really kind of in a spot where they can deal with it effectively. So, that’s a quick summary from my viewpoint.
Denver: That’s a good rundown. Well, one of the things you’ve done, you’ve developed something called the Livestrong Guidebook, which assists cancer survivors to navigate the physical and emotional and practical concerns that they may encounter during this cancer journey. Give us an idea of the kind of information that’s in that guidebook.
Greg: Our guidebook that you point out, Denver, is actually two volumes. This first is a guidebook, and it literally is a one-stop shop where you can find information and resources that are available. And it attempts to be pretty agnostic to the type of cancer you have. As you may know, cancer is not one type. There’s 200 plus different types of diagnoses. And as a result, this tries to be a little bit more generic about what cancer is, what it means, what are the steps that you’ll go through, what kinds of logical sequences make sense for you to do, and where can you get information.
I think the other element that’s an important part of that guidebook that we found that people needed, was what we call a journal, or that second set, which is really a way for people to have kind of a central repository. It sounds like a big word or a big frame, but they need a place to keep all the stuff. Whether it’s notes or receipts or doctor visit things, or appointments or contact information for everybody. And so we put together this journal that is literally a binder that allows people to organize and structure and maintain and keep all their stuff.
On Day 1, about all they know is I’ve got a doctor appointment, and I need to show up at a doctor’s appointment. Day 180, there’s 180 pieces of stuff, and where they put it all, and how do they keep it all organized? So that journal is kind of an important ancillary document for them to keep, just to have everything accessible and write it in.
Denver: Yeah. It’s great to have because I think also sometimes, when people are going through this, they’re not listening always attentively as they should because they’re scared. So being able to collect all that information someplace is a godsend. One of your signature programs is a partnership you forged with the YMCA in communities across this country. Tell us about Livestrong at the YMCA.
Greg: One of the things that’s different about Livestrong is that we don’t just sit in an incubator in Austin, Texas and come up with programs. We listen to cancer constituents. We survey them. We ask them: What are their problems? What are their challenges? What are the gaps that they see? And years ago, the results of our surveys kept coming back with, “You know, I finished my cancer treatment, but I don’t have any strength. I’ve got a daughter that’s getting married in 10 weeks, and I want to be able to get up off the couch and walk her down the aisle.” Or “I’ve got some other activity that I want– I want to play golf with my buddies again, and I don’t have the strength or the quality of life that I want to have. What do I do about that?” And we kept hearing this and kept hearing it, and kept hearing it.
So, we had a group of staff members go to Stanford University, learn and train. They spent about three months walking through an education program. They use their knowledge, what they learned at Stanford to develop a free 12-week recovery program that would help cancer survivors post-treatment kind of get back up on their feet. And to date now, you point out, we have about 625 YMCA locations around the country. We’ve had more than 52,000 people go through that program. It’s a free 12-week recovery program to really be able to get people out of the bed, back on their feet and back into the active lives, and kind of restore the quality of life that they all want to have.
Denver: Yeah. Just a great partnership. I think we so often, we think of partnerships between nonprofits and corporations, but there’s a lot of them between nonprofits and nonprofits, and this is one of the better ones.
Greg: This was a terrific example of us having a curriculum and having the program and the YMCA having a broad network of facilities and infrastructure, and a perfect marriage of two like-minded organizations to have a terrific program.
Denver: As you know, Greg, there are more than 150,000 people of reproductive age who are diagnosed with cancer each year. And to assist that population, you have the Livestrong Fertility Program. What kind of support does that provide?
Greg: One of the areas, again, that is one of these gaps in services that we see in the cancer continuum is specialized services to young women, young couples, young men as they go through their reproductive years. Oftentimes, their clinician and their doctor will talk to them about cancer and what they need to do to treat it, but they don’t talk about, “God, you’re young. Do you want to have children?” What does that mean? And if you want to have a family, what does that look like?
There are steps that you can take. And even if they do talk about it, the fertility process, the preservation process, the fertility stimulation process, things like that, cost $25,000 or $30,000. And if you are a young adult or a young couple who may have just graduated from college or may just have bought your first car or house or beginning a family together, to tack on, first of all, you have a cancer diagnosis, but then to try to say “Well, if you want to have a family, it’s going to cost you $30,000 or $40,000 out of your pocket.” People just can’t afford that. So this is another one of those gaps that we took aim at that really provides technical assistance, advice and counseling, but we also have a network of about 660 community cancer centers around the country that will help them with their fertility needs at significant discounts.
We have a partnership with EMD Serono that helps provide medications. And as a result of that, this year alone, we’ve already served over 1,350 couples. We saved them north of $10 million in their costs. And literally, the fun part about that–and I’ve been with the organization long enough now–the people that I met within the first year or two that were single at the time, that were diagnosed, that went through the fertility exercise with us, are now coming out the other end, and they’ve got twins. They’ve got a young baby on the way and things like that. So, it’s amazing to see kind of that full circle.
Denver: Very sweet. I think it was in 2014 that Livestrong made a 10-year, $50 million commitment to the Dell Medical Center at the University of Texas. What specifically are you funding? And where do you stand with that?
Greg: All of our activities and initiatives prior to this investment, I would call reactive. Meaning that we were making an investment to help people who were diagnosed with cancer. We were making an investment to help people get back on their feet with the recovery program, like with the Livestrong-YMCA. But in our mind, those kinds of services ought to be all about the treatment.
Why is it that the average person learns more about their insurance six or eight months after a diagnosis when they’ve got a dining room table full of invoices and receipts and insurance bills? And so, our investment with the University of Texas and the Dell Medical School was really a way to proactively change the focus and have the patient educated on Day 1 about their insurance, and they know what it covers. And if the best place to get a mammogram is across town because it’s less expensive, then let’s do that. Let’s plan to do that. If the best cause of treatment is this or that, then let’s plan to do that. Let’s focus everything on the patient.
The advantage that we had with the Dell Medical School is it was new, and you are able to start with a blank sheet of paper and start programs with a patient in the center. There are many institutions that are working really hard to put the patient in the center. But for so long, they’ve had a mechanism and an infrastructure that put the disease in the center, and even though they’re trying to tweak and twist and turn to refocus that, it just takes longer to do it. So, we’re really excited about being able to put the patient in the center, to be able to focus not so much on the tumor, but the patient who has the tumor, and really put them at the forefront. And for us, it’s just a way to proactively look at the cancer trajectory and do something that will be good for the cancer community long-term, not just the short-term things that we’re doing with navigation or fitness with the YMCA.
…one thing that we continually learn about fundraising is that it doesn’t just start with fundraising. It starts with education. It starts with awareness. If you tell people and you do a better job of explaining to people what you do and why you do it and why it is important and what impact it has in changing or saving lives, people are more likely to give of their time, of their energy and of their resources and funds.
Denver: As I mentioned earlier, you are building your fundraising up again. How are you doing it? And what are some of the different streams of revenue that you have that help support the work of the organization?
Greg: I think the one thing that we continually learn about fundraising is that it doesn’t just start with fundraising. It starts with education. It starts with awareness. If you tell people, and you do a better job of explaining to people, what you do and why you do it and why it is important and what impact it has in changing or saving lives, people are more likely to give of their time, of their energy and of their resources and funds. So, part of our effort was really focused on: here’s what we do, and here’s why it is important.
The second thing that we realized is that we have to provide channels of revenue and opportunities that kind of meet donors where they are. Some of them want to participate in events. As an example, here a few weeks ago, we had a team participating in the New York Marathon that was raising money for the cancer fight. So, there are some people who want to participate in events, and that is their way to donate. There are others who want to participate in maybe a workplace giving program where they have a small amount taken out of a paycheck every period. There are others who want to fund specific programs. There are others who want to buy merchandise. There are others who want to make endowments and large one-time gifts for very specific purposes. And again, what we try to do, Denver, is have a menu of options that will really help cater to each different type of donor, to kind of meet them where they are. And we found that to be really successful, but I think it all starts with really: “Here’s what we’re doing. Here’s why it is important, and why we need you to step up and help us.” And I think that’s really primarily what has helped us turn the corner on our fundraising success.
Denver: Yeah. And major gifts are a big part of that, and I know you recently had your first $1 million dollar major gift, and that is quite the milestone.
Greg: Literally had the first $1 million gift in the last 10 years. I can tell you that since then, we’ve had several quarter of a million dollar gifts and several $50K and $100K gifts, so it’s amazing how that snowball begins to roll. Once people begin to understand: here’s what the foundation is doing. Here’s the good work. Here’s the impact, and then they usually want to step up and help.
Denver: Let me close with this, Greg. Earlier this year, you celebrated Livestrong Day as part of your 20th anniversary by commemorating the iconic yellow wristband. What is the story behind that wristband? And what has it meant to the organization over the years?
Greg: First of all, that wristband has been phenomenal for our organization, and that’s an understatement. We’ve now distributed somewhere north of 90 million of those around the globe. It meant a lot to us in terms of fundraising, but I think the other thing was just more hope and inspiration awareness.
It really started quite easily. We were kind of going through a lull where we were trying to find something, a way to share with the community what Livestrong was about, some way to give people something to latch hold of. And Nike, one of our partners at that time, was tasked with an idea of coming up with a solution and idea. They’ve got a marketing team and a brilliant group of folks, and they had silicone bands that they use for basketball teams in intercities and they called them “baller bands” at that time. And so they thought about the idea of coming up with a baller band that was in yellow, kind of symbolic of the yellow associated with professional cycling, and they thought that might be a way to kind of have something that could be iconic.
At the same time coincidentally, the foundation was going through a process to identify the name of a program that would cater to survivors that were going through the battle, and trying to give them hope and inspiration and resources and information. And the team internally landed on Livestrong as the name of that program.
Denver: They were right!
Greg: They were exactly right. At that time then, we started off on a mission to figure out, “Okay, what do we put on that band?” At the same time coincidentally, the foundation was going through a process to identify the name of a program that would cater to survivors that were going through a battle, and trying to give them hope and inspiration and resources and information. And the team internally landed on “Livestrong” as the name of that program. And so the second that other people said, “Well, wait a minute. I hear this Livestrong term. Wow!,” that might be the best thing to put on a wristband, in addition to just the yellow silicone, that really promotes what the organization is about. So that’s kind of a short story on fast forward to how we got where we’re at.`
Denver: And you just distributed another 100,000 back in May to cancer warriors. So, it lives on.
Greg: Exactly right. We had a promotion around Livestrong Day, and literally more than 100,000 people took us up on that benefit. And so now, there’s 100,000 more out there that are wearing those wristbands.
Denver: Fantastic. Well, Greg Lee, the President and CEO of the Livestrong Foundation, I want to thank you so much for being here this evening. Tell us about your website, what visitors will find there, and how they can become involved with your organization?
Greg: Thank you, Denver. The website is livestrong.org, and they’re going to find it to be very simple, pretty straightforward website. There’s ways to get involved, and literally, it’ll say “Get Engaged” and it gives you an option. It gives you: Do you want to donate money? Do you want to participate in an event?
And there’s another section that says: Do I just want help? And if you want help, that’s what we’re there for. We do that to north of 300,000 people a year, and they’re going to find 22,000 articles. They’re going to find videos. They’re going to find chat rooms. They’re going to find all kind of resources there. But it’s really pretty straightforward and starts at livestrong.org, and they can walk through the steps, really easy. I would just encourage people to take that first step. Once they do that, they’ll be rewarded. They’ll get the information and the resources they need to be successful in their cancer journey.
Denver: Fantastic. Thanks, Greg. It was a real pleasure to have you on the show.
Greg: Always a pleasure to be here, Denver. And thank you for hosting this, a great job of sharing the pluses and minuses of charities in the public world. Thanks again.
Denver: My pleasure.
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