The Pediatric Moonshot
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The Pediatric Moonshot
E51: Liz Scott on Alex’s Lemonade Stand and the Power of a Child’s Mission
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Liz Scott, co-executive director of Alex’s Lemonade Stand Foundation, joins Timothy Chou to share the story of her daughter Alex, whose front yard lemonade stand became one of the largest childhood cancer charities in the U.S. She discusses how the foundation funds innovative pediatric cancer research, the promise of AI to accelerate discovery, and the ongoing need to make better, less toxic treatments available to children everywhere.
This episode is brought to you by BevelCloud—powering distributed AI in healthcare and driving the Pediatric Moonshot forward. Learn more at BevelCloud.ai."
Good morning, good afternoon, good evening, everyone, to another edition of the Pediatric Moonshot podcast series today. I'm really pleased to have Liz Scott join us. She is co-executive director of Alex's Lemonade Stand Foundation. She is a graduate of the University of Connecticut, Go Huskies. Her daughter, Alexandra, which we will hear about more, was born in 1996. As the Alex's Lemonade Stand has raised more than $400 million, funding over a thousand pediatric cancer research projects nationally. She is on the National Cancer Institute Pediatric Solid Tumor Steering Committee Board, the Executive Advisory Board of Cancer Today. She's a self-made nonprofit CEO who built one of the largest childhood cancer charities in the U.S. from a front yard lemonade stand. Welcome, Liz.
SPEAKER_01Thank you. What an intro.
SPEAKER_00You have to start by telling us Alexandra's story.
SPEAKER_01I am always happy to. My daughter Alex was diagnosed two days before she turned one with neuroblastoma, which is a pediatric tumor. She would go on to fight cancer the rest of her life. She went through two years of surgeries, the known cures via chemotherapy, radiation therapy, and she never went into full remission. At that point, we were told there really were not very many options, but there were some. And one of those options was uh what's called MIBG therapy or MIBG treatment. And this was at the time in 1999 a really exciting idea, still pretty exciting, but it was uh very targeted. So neuroblastoma cells like soak up this radioactive iodine, and not a lot not a lot of other places in the body do. So they were able to attach uh like a radioactive isotope to that, something along those lines. She was the second child to receive it, it worked dramatically. And I bring that up at the start of the story because if it wasn't for that, there would be no lemonade stand. So not only are we dedicated to finding new ways and innovative ways to treat children with cancer, we were literally founded because of one of those therapies. Um, inspired by that, we pursued uh a number of additional options that were now available to her. She lived four and a half more years fighting cancer, but three years of those were really the best years she had because of the treatment being that she was on being less uh toxic for her. It also is the thing that inspired her to do her lemonade stand. So shortly after that, she decided she wanted to have a lemonade stand. She was just turned four, and she persisted for months because I put her off as parents do when you have we had two other young children at the time, you know, a five-year-old, a four-year-old, a one-year-old, and it was cold. So I said, you know, we'll do it. We'll do it later. We'll do it eventually. And finally, one day, after months of asking about her stand in June of 2000, she said to me, We still haven't had my lemonade stand. And now it's hot out. I said, Alex, what do you want to buy so badly? And she said, I want to, I'm not keeping the money, I'm giving it to my doctor so they can help kids the way they helped me. So truly, that's why we we believe that she was inspired by that treatment that brand was brand new. She was the only second child to receive it. And the reason we shared that with her is because she had to come to a new hospital in Philadelphia, have a whole new team. She had to be in a lead-blind room. There were a lot of reasons to be scared for a three-year-old or anybody to be scared. So we had to get her excited. And I believe that is what gave her the idea that this worked. She felt better, she was off-paid medicine, she was happier, that she could do something to help other kids. And that is truly where the idea came from. I thought this was absolutely adorable. Uh, at that time, kids weren't doing lemonade stands for charities. So I think she helped create this mechanism as a way to raise money for kids. And long story short, we she was a huge, it was a huge success from day one. We told her she'd raise five or ten dollars and she said, I don't care, I'll do it anyways. But she raised $2,000. And at the end of the day, she said it was the best thing that ever happened to her. Little did we know that she would go on in her lifetime to raise over a million dollars because other people would start having lemonade stands and helping her. And still when she passed away, that we would be able to continue it. And now closing in on $400 million raised all because of research. And that's why we believe so thoroughly in funding research to find better, more innovative, more targeted therapies, less toxic therapies for kids with cancer.
SPEAKER_00Wow. What just transitioned me from she passed away to you go, we're gonna do this, we're gonna set up a 501c3, go through all this effort. What was that like right away? Did you like take a while? How did that work?
SPEAKER_01It was it was pretty much right away, mostly because other people responded. So she had been uh, because she set a goal of raising a million dollars, she was on in every news outlet before she passed away. She was interviewed by Oprah on the Today Show. There were hundreds of newspaper articles. There was a movement starting, and this movement was pretty clear was continuing after she passed away. And in fact, her passing was reported by all of those same outlets, right? So now people were saying, I had no idea she was so sick. What an inspiration. This makes this work even more important. We started hearing from families whose children were fighting, who had just been diagnosed, saying, I was following this story and now my child is fighting. We're so grateful that Alex has given us all a voice. Um, and that's when we decided we could either direct people to donate to a local, you know, hospital. Uh, we had considered becoming part of another hospital as like their fund or starting our own foundation. And honestly, it was just really good luck that we had a friend who was very familiar with nonprofits, how to set them up. He said, Listen, here's what you need to do, here's the things you need to think about. Let me make a couple phone calls. Next thing we know, we have like pro bono legal help, getting the filing. So we kind of felt like as many great things in life, you know. I know people say like sometimes it's when things are hard, it's better. But in the case of this, the pieces came together so beautifully to start our own foundation. And there was so much more that it felt like we needed to, right? This was almost like this magical thing happening was that was continuing that Alex started. And and there's been those moments over the years where we just feel like, okay, this was meant to be, and this was something certainly that we can continue. And that was how we started it.
SPEAKER_00Wow. Well, it it it obviously has been enormous success. Uh, talk about some of the success stories. You funded a lot of research through the years. A couple of them must stand out to you.
SPEAKER_01There are many that stand out. We fund, you know, everything from early innovative science all the way through to clinical trials and kids. I would say two, just as you're asking me that question that jump out at me are one is a very early innovation award we gave out. These are two-year, you know, 250,000 seed money basically for an established researcher with a great track record who sees a new pathway, right? Or see has a new idea. So something that's a little bit different than the work they've been doing, probably building off that. And we want to give them the seed money to get that sort of preliminary idea, see if there's anything to it. So they're a little bit high risk because many of them are not gonna work out. Well, there was one, gosh, it was one of our early innovation awards. And the idea that I'm gonna use in the layman's term because I am not a scientist and I only understand in layman's terms was basically to take a form, let's say, of the polio virus. Maybe folks have heard of this now, and um figure out how to sort of, you know, inject it or trick the body into uh thinking that this brain cancer was polio. And we gave him an innovation award for that. And he ended up eventually getting it into a clinical trial and had success with young adults and you know, adult uh brain tumor uh teenagers and young adult brain tumor patients and was on 60 Minutes. You know, this was a story that 60 Minutes covered because it was, you know, an at the time one of those sort of first new innovative ways that had made its way all the way through to helping patients. And we actually met one of the young women. She contacted us and told us her story about how her brain tumor came back. And the doctor told her when she asked the doctor if she would get to graduate high school, basically was told very unlikely that you're gonna live that long. She was actually the first person to receive this treatment. She was featured on 60 Minutes. We had we had met her since, and she, you know, just shared how she went from thinking, and her family went from thinking she wouldn't graduate high school to now, you know, going to college and to become a nurse and living her dream. So that was one of those early successes that we thought, okay, this is working. It's not working for everyone, but it's working. And then the second one that was just so close to home was it's a much longer story, but essentially we had Alex's tumor analyzed it during the pandemic. So in the early 2020s, and we learned that her particular neuroblastoma had something called an alk mutation. And that was significant because we had funded so much research when that discovery was made in aggressive neuroblastoma that allowed that finding to be translated into a trial and a treatment for kids whose neuroblastoma and some other cancers have the elk mutation. And the treatment was highly effective for those kids. So it was a big full circle moment. We had also met so many families whose children had been helped because of this, were in and were in contact with them. And then to learn that Alex diagnosed today would have a definitive answer up front about why chemotherapy and radiation therapy alone wouldn't work for her cancer and have something they could give her to increase, greatly increase her chances of surviving, would have completely changed her life as it's changed the families that we've talked to. Um, so we know it can, we know we can do it, and it just gets us so excited for the future.
SPEAKER_00Yeah. Let's move into the future. Um, I mean, the world is a buzz in the conversation around AI. Uh what do you see as a role of AI either in accelerating diagnosis or accelerating treatment for pediatric cancers?
SPEAKER_01It is very exciting. I know AI is, I feel like every meeting I'm in, someone's talking about it, right? It's exciting. Uh we have a data lab that we started in 2018 now. Um, they have been using AI for years to help solve some of the problems in using data and providing, they were providing tools that use AI to pediatric oncology researchers. That's the tip of the iceberg, right? Um, I would say the rate of discovery is probably the thing, right? The rate of discovery, which means the rate of figuring out what's going to work for kids with cancer, should drastically increase, I would think, through the use of AI. I don't know that it's quite there yet. I know there's a lot of exciting initiatives like yours and many others that are happening. Um, we've seen some, we have something called the Crazy Eight, which is a $5 million grant. We have a couple of projects involving using AI right now under review, using AI to try to help children with brain tumors, which are the deadliest pediatric cancers. Um I mean, I think, I think we don't even know yet, right? There's so much to learn and how to apply it, but certainly it opens up, I think, the the pace of discovery. I would think, you know, we might look back in time and say, this was when things changed, right? This is when things that took 20 years maybe could take a year. You know, I don't know what the right what the right numbers are, but I think to me, across the board, whether you're talking about finding targets, bringing drugs to kids, figuring out what will work for that child, I have to think AI is going to greatly enhance it. I know people are worried it might take jobs or it's, you know, it's not perfect. I think for this application, we can all agree that it could just the power of it is going to be greater than the human power to do what it can do in a short period of time.
SPEAKER_00Yeah. Amen to that. Um, talk about the future of fundraising for a minute. Uh, you guys have been enormously successful. What do you see going forward?
SPEAKER_01Well, we we hope to continue to be enormously successful because we have a lot of work to do still. We never we never think of fundraising as the goal, right? The goal is having an impact and the needs are still there. I mean, childhood cancer is still the number one disease killer of children in the U.S. And globally that's an even bigger problem. The numbers are more grim. So we have a lot of work to do. Our fundraising drives that. We hope to continue, you know, our big partnerships that we have with companies have been uh probably our single greatest, not so secret, secret to success. Um, we hope to continue to build those and build those and get many more companies that can have a big impact on board for kids with cancer. But we still, you know, we're gonna have more lemonade stands this year than ever. So we're still growing our lemonade stands. We're still growing that grassroots community-based fundraising. It's a it's tough though. I mean, there's it's every year we basically are starting over, right? So we're also looking at ways to build more sort of years out sustainable, reliable income. And that's kind of more of the like corporate strategic side of what we do, but we have to do that to make sure that we can achieve what we need to achieve for kids with cancer.
SPEAKER_00Amen. Amen. You touched on global. I uh what what is the role of Alex's Lemonade Stand globally? Do you fundraise globally? I don't even yeah.
SPEAKER_01We most of our fundraising is in the US. As far as funding research goes, we currently primarily fund projects in the US and Canada. Some of those have been global projects, so with a global focus. We also have projects that have your European projects and European collaborators. We're doing more of the European collaborations and funding now. In terms of really having an impact globally, we've really just begun. I mean, so the idea is like a cure found here is a cure everywhere, but we know that that's actually not true because we have cures here that are not available in other countries to children with cancer right now. So we need to ensure that the cures we're finding are cures that could be delivered in middle and low-income countries. And then we have to figure out how to deliver them. And that also involves making sure children are diagnosed. So we are just beginning an exploration of what that could look like. There are some models out there, um, but I don't think we can fulfill our mission if we're ignoring that fact and focusing solely on children in the wealthier countries.
SPEAKER_00Yeah, yeah. Uh I'll end by asking you uh if Alex was with us today, uh, what do you think she'd say about her lemonade stand?
SPEAKER_01Wish, I wish I knew. Okay, knowing eight-year-old Alex, which is my late, my most recent frame of reference, knowing her personality, probably would be something similar to what she said when she reached her million-dollar goal. Very happy and celebratory, but immediately said, now I'm gonna raise a bazillion dollars. No, and I think that drive that she had was truly because she understood how hard it was for her to beat her cancer. And at that point in her life, she knew she wasn't going to beat her cancer. So I I I think she would feel the same way, and we do too. Like, you know, just when we're feeling like there's progress, we hear from a family whose child is is not doing well or has no options at all. And that really bothers us. I mean, it haunts us to a certain extent, and we it it can only feel so celebratory, you know, knowing that there are kids out there that will never get the opportunity to celebrate that, and parents who will never have the opportunity to celebrate that. And it's kind of a hard place to be, but it also drives us, and I'm quite sure Alex would be a hundred percent on the same page with that.
SPEAKER_00Well, it's an amazing thing you've done here. Um if people want to know more, what what should they do?
SPEAKER_01They can just search for Alex's Lemonade Sand, of course, but our website is alex's lemonade.org, just the way it sounds. Um, and there's so much information on there about childhood cancer, about what we fund, and all the different ways you can get involved and help out.
SPEAKER_00Well, again, thank you for taking the time today, Liz.
SPEAKER_01My pleasure. Thank you. Thanks for all you do.