Alex's Lemonade Stand Foundation and the Fight Against Pediatric Cancer with Liz Scott
Episode 1621st February 2024 • This Week Health: Conference • This Week Health
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  Today on Keynote

for her to announce she was going to raise a million dollars in one year before she died was that moment where

I remember thinking, oh no, like this incredible thing is going to disappoint her because she can't raise a million dollars. And she did it. And then in doing so, I think she created this movement.

 Welcome to this very special episode of This Week Health. Today, we dive deep into this heartwarming story of hope, courage, and transformative power of community action. We're honored to spotlight Alex's Lemonade Stand Foundation, an incredible organization that began with a four year old's lemonade stand has since grown into a powerful force against childhood cancer.

In keeping with the spirit of community and support, we have an exciting announcement. for those attending the ViVE or HIMSS conference this year. Look out for Captain, our lovable service dog. Snap a photo with Captain and share it. With the hashtag CaptainLemonade and we are going to donate to Alex's Lemonade Stand Foundation for every photo shared thanks to SureTest and CTG's Generous support in our united fight to end childhood cancer.

That's 1 for everybody you get in the picture So grab your friends, find Captain, get the picture Put it out there on social media. We just appreciate your generosity and being a part of this. Now, on to the show.

 Welcome to Keynote. Today's episode, we're going to delve into the story that begins with a simple yet profound idea of a four year old girl and a lemonade stand to fight against childhood cancer.

And today we explore the remarkable legacy of Alex Scott and Alex's Lemonade Stand Foundation, the foundation born from Alex's vision of raising money for cancer research. through her lemonade stand has blossomed into a national movement, embodying hope, determination, and the collective power of small acts to ignite significant change.

📍 Today we're joined by Liz Scott, Alex's mother, who continues Alex's work. , Liz, welcome to the show.

Thank you so much. Appreciate being here.

I'm looking forward to the conversation. We were talking earlier. When the team came to me and said, Hey, let's, I wanted to give back.

And they said, Hey, it's Alex's lemonade stand. This is a great organization. We want to be a part of it. I didn't know what I was stepping into. The, , the community, the camaraderie, the stories, the people, pulling me aside and thanking me at these conferences, people I've done work with for years, saying, hey, let me tell you my story.

It's a great community. Of people that are really facing childhood cancer

together. It's an incredible community for a lot of reasons. I think one thing that you've already seen that you learn, even though, thankfully, childhood cancer is rare as a condition in general. You very quickly learn it's not as rare as you think.

Once you're in this community and people know you're in the community of childhood cancer and you're helping kids with cancer, you do hear a lot of stories and it seems like everyone has a story of a neighbor, a cousin a friend's child. Sometimes a very personal experience being a survivor or having had a child and you meet some incredible people who are just super grateful that you're helping.

And then you meet a whole nother community of other people who are like you who want to help and do everything they can. That is just inspiring to see, right? Other people who want to give to what you're doing and want to help support the cause. To me is like the thing that surprised us the most is how many people want to help.

So Liz, I want to take you back to the to the beginning. I'd love to have you share what motivated Alex to start the Lemonade Stand and what it's meant to your family and what it's meant to the community. But let's start with that first act. As a mom, us that story of that first lemonade stand.

When Alex was about four years old, she had been fighting her cancer for three years. So, most of her life at that point. And she decided she wanted to do something to help other kids, but we didn't know that. So she told us she was going to have a lemonade stand one day, and it was January and we lived in the Hartford, Connecticut area.

And I You know, it was terrible weather for Lemonade. She had just had her first experimental treatment, because we were already to the point where the known cures weren't working for her. And she was inspired by that treatment, I guess, to try to do something, because it really helped her. She felt better.

in June, this is way back in:

But you need to have a lemonade stand and she said, I'm not keeping the money, I'm giving it to my doctor so they can help kids the way they helped me. So I really think it was inspired by or born out of the fact that she had this brand new treatment, which we told her it was brand new. And it helped her and she saw the potential for other children to be helped.

She was a super smart four year old, obviously had seen a lot in her short life. And I was amazed. It wasn't a time 24 years ago now when kids were doing lemonade stands for charity. I think Alex helped bring that idea to the commonplace that it is now. And I was amazed, and I was surprised.

Honestly, though, I thought it was adorable. Alex thought she was going to cure cancer with a lemonade stand, and she always had these things that she was going to do, right? So, I said, Alex, that's great. You're going to raise five or ten dollars and I was almost laughing about it. And you're going to tell your doctor to cure cancer with it.

And she said, I don't care. I'll do it anyway. So that was truly how we started. It really came from her. She had the idea. She had the attitude of like, every donation counts, which has stayed with us today. And she had the inspiration to so many other people, as I just mentioned, like people who just want to help.

And get on board and be a part of it.

And that first lemonade stand raised a couple thousand bucks?

Raised two thousand dollars. We couldn't believe it. I mean, we really couldn't believe it. That was beyond anything we could have imagined. Anything. We had no idea that was just the beginning.

Yeah, that's amazing. in those early days, how did you balance the emotional challenges of Alex's diagnosis and treatment with supporting her vision for the lemonade stand?

It was hard. I mean, the first one, the first couple of years was really, it was a lemonade stand one day in our front yard.

So it didn't feel like there was a lot of balancing going on with that. When it got really hard was when she became sicker when she's now, seven years old and eight years old. And her lemonade stand became bigger and more well known. And that was extremely hard because physically, she was giving everything she had.

to her life, just getting through the day. She was often uncomfortable. We were at the hospital a lot, pretty much daily. And the future was really uncertain for her. But at the same time, this lemonade stand was taking off and it was this like, beautiful show of support for her and for what she was trying to do to help other kids.

I also should say she didn't love attention like that. So, that was stressful for her. All of the people wanting to talk to her and go doing interviews, she really saw that as something she had to do, not something that she wanted to do. What she wanted to do was raise money to change things for other kids, and in order to do that, she had to have that attention and so that alone was stressful for her.

So it was a really, it was a really hard time for us.

Wow. So, but from a single lemonade stand to a national foundation what were some of the pivotal moments or decisions that shaped the growth of Alex's Lemonade Stand Foundation? I think

there were I think there were a couple moments, right?

I mean, obviously that moment when Alex decided to have a lemonade stand to, to help other kids, I think, has to be credited, right? I think if you fast forward to the moments that shaped the organization today, you have the moment when she was, six, maybe six and a half, when she told us, after a conversation about where the money from her lemonade stands was going, that we were being selfish, and that we needed to fund Researched all over the country for all kinds of pediatric cancer because we were only funding her type of cancer, which was neuroblastoma at the Children's Hospital of Philadelphia, which was now her main hospital.

We had moved to Philadelphia, and that was a huge moment if you think about it, because That set the path for the vision that we have today, right? Which is we want cures for all kids with cancer. And it set us down the path of funding virtually every type of childhood cancer and having the impact that we've had.

And then I would say another big moment was when Alex said she wanted to raise a million dollars. She had raised about a hundred thousand over a few years, and that was beyond anything we could have imagined. And then for her to announce she was going to raise a million dollars in one year before she died was that moment where I remember where I was when I heard her say it.

I remember thinking, oh no, like this incredible thing is going to disappoint her because she can't raise a million dollars. And she did it. And then in doing so, I think she created this movement. People heard about this goal and wanted to be a part of it. That honestly is what catapulted her legacy.

And after she died, it's what allowed us to continue doing what we do and to continue to grow and to bring new people. And new kids with cancer into the conversation so that we can help them all,

No parent likes to be told by their kid that they're being selfish, especially when, you're just trying to care for them and whatnot.

But shared that story with me last year when we were talking, and I've since shared that with a couple of groups that conversation where she said no, not just my doctors, not just my cancer, but. All kids with cancer and it's amazing to think of someone battling with cancer at that age who has the wherewithal to look at it and say, bigger than myself, beyond myself that's a that's an amazing, that's an amazing gift that I wish all of us had to be able to see beyond ourselves.

I agree with you, and I think, I actually appreciated the incredible person she was more as the years have gone by than in the moment. In the moment, you're having a conversation, she's your child, you're, really concerned about her well being, but more and more over the years, I look back at that moment of the few, and I think she was really setting the vision.

of how we can change things for kids with cancer. By her saying that, she literally set into motion something. That has allowed us to cure kids with different types of cancer from her who previously were incurable. And that is a huge gift that she gave the community, but that really that I think of it as she gave to those other children who've been cured because of her vision.

And we, yeah, I mean, gosh, if I could have that in my lifetime, my longer lifetime, that, that would be incredible.

So, the Foundation has expanded a little bit since then, and how have its goals and strategies evolved to address the changing landscape of pediatric cancer research and the support of families?

We're

constantly evolving. So, for us, this is an this is what we do, and this is all we do. We're very much looking as, with each passing year, we're asking what more can we do as we raise more money? Not that the problem is solved, but we're just seeing the tremendous needs in the community.

So I can give you an example. When we started the foundation after Alex died, we were grieving parents. We were, there was, some anger and a lot of frustration over the fact that our daughter wasn't cured. And we said things like, we will only fund research. We will not consider doing anything but research.

We want a cure. Now, over the years, we've learned that is still our primary focus, right? We are a research focused organization. However, we very quickly learned that there are needs that families who are going through childhood cancer have that are not being met, and that we had an opportunity to help with, and we couldn't turn our back and ignore those.

So that's how our travel for care program came about. So we're creating more opportunities for clinical trials and new therapy. But most families have to travel to get there. Our family had to do that as well because they're, only at certain centers when they're experimental. And families couldn't get there if they couldn't afford to get there.

So we needed to create a program to allow families who weren't privileged to be able to travel across the country for treatment to be able to do that. So we pay up front for those families. So that was one example. Later on. We learned about the intense needs of siblings of children with cancer and had an opportunity come to us that would allow us to support siblings of children with cancer.

And again, said like, it's not exactly what we do. But at the same time, it is what we do, right? We're trying to help change the lives of children with cancer and their families, and here we have an opportunity to do so. So we're constantly evolving on the research side. We're always looking at new ways that we can innovate, new ways that we can be a leader in the childhood cancer community.

That we started the Childhood Cancer Data Lab several years ago, just honestly to respond to one of the needs we heard about in the research community. We've created larger and larger grant programs to respond to those needs every single year. We've got a list of new programs that are, as we call it, on the wish list that we, check off as we're raising more money.

Yeah,

the. The website is loaded with great stories. Could you share some of the achievements or breakthroughs that have been, particularly meaningful to you? I mean, that's some of those stories are just amazing and they they get fed into our portion of the website and whatnot.

And I just love. Reading the stories and there are cures. I mean, there are essentially kids who are walking around today as a result of the research and the work that's been done. I'd love for you to share, just one or two of the stories that are meaningful to you.

I think, the ones that always, they're all super meaningful, the ones that always get me, and probably because I was that parent and Alex was that child, are the ones where your kids have, everything has failed them, right?

These are kids who were just like Alex, who really, you're at the point where you're being told there is no cure. For your child, and you're given the options of, if you're fortunate, you're given the options of trying something experimental with some kind of new, clinical trial. And in my experience, you go into those with hope, or you wouldn't be doing them.

You want to do what's best for your child. You go in with hope, but so many treatments have disappointed you to that point. But you can't even let yourself believe that they're going to work. And chances are, if it's an early phase trial, meaning they're not necessarily, they don't even know the proper dosing, right, the most effective dose, they're not sure if it's going to work, you also know that the odds aren't in your favor.

Those are the stories. When we hear from parents, Who contact us because they say, Dr. So and so told me that this trial that my child went into when there was nothing left for them. And now they're two years cancer free, three years cancer free, four years cancer free. That was made possible because of Alex.

And that's how they view it, right? As a parent, because of your daughter. And I had to meet you, or I had to reach out to you and let you know that. Alex is alive very much in my child. One family told me they, on their child's birthday, she's now, I want to say 16 same cancer as Alex. She, nothing had worked.

She went into this trial, like just in time, she got into this trial that we had funded and they said every birthday they light an extra candle for Alex. And I thought, wow, I mean, that talk about having an impact, right? So she's they're so grateful to her. And there's so many of those stories, but at the same time, we also know families where, they're looking for something and there's nothing to offer them and nothing works for them.

And those are the stories that make you realize that as far as we've come, there is a lot more work to be done. Those are the hard, those are the hard ones.

Yeah. The, yeah, we hear on this podcast specifically, we talked to a lot of. People at the intersection of technology and health care. We're talking about genomics and we're talking about personalized medicine.

We're talking about just these advances that we see happening. And I assume you're seeing those same things in the research. You're seeing just advances that I don't know, five, 10 years ago, weren't even, we're on a whiteboard, but now they're coming to fruition.

It feels to me like it's. An exciting time, like there's more hope out there, even though, challenges remain.

I always say that to people. It's a very exciting time because of what you just said. The way they're studying cancer, what they've learned about cancer, what they've learned about the different ways to attack and, kill cancer is very different than it was 10 years ago.

And I think even in the past five years, the kinds of projects we're seeing coming through. Are innovative and exciting and give us real hope that, I think we're on the brink of making not just small steps, but pretty big steps towards, towards all cancer. But obviously my concern is pediatric cancer.

All right, Liz, I'm going to use this time for some free consulting here. So we've done a lot of creative things over here to mobilize the community to get the community engaged. We've we've done captain's campaign for cures where. My daughter's service dog goes to conferences with us, has a barcode on the side where people can give.

We have partners who have partnered with us when they take a picture and whatnot. But you've probably seen a ton of creative ways that people have done it. What are some of the more creative ways you've seen people get the community engaged?

I have seen, I can't, I mean, honestly I, at the top of my head, I'd say the ones that stand out to me are when people do something, they put themselves out there and do something.

I'm going to say maybe out of character or funny or something that gets other people inspired. So, we've had, a guy he was a clean shaven person. He grew a beard. He said he was going to grow it for a year. Nothing, do nothing to it. Just keep growing it. This thing was really a bushy beard.

And then people could vote. What he did with the beard, I guess, I can't remember if it was shave or no shave or what it was, he grew his hair, too. They could vote on the hairstyle. They could vote on shave or no shave by donating. So whatever got the most donations is what he did.

And of course, he ended up with like, wacky, wacky hairstyle. But keeping the beard, I think, is what the outcome was. I was just like, No, it probably wasn't an easy thing for him to do, even though like not doing something seems easy, but I'm sure it was getting on his nerves after a little while but was also willing to be like, hey, however you want me to cut my hair.

That's how I'm going to do it. We've had people do more of like community focused things where they've They've done like a March Madness with their pets in an office. So everybody, they had their, like, pets like, competing for cutest, and then they would get both, and then they would advance, and then they'd get both, and they have, like, the final four, like, the cutest pets in the office.

But There was, there was like, you had to donate to vote, so people wanted their pet to win and they got all carried away. I thought that was pretty clever. I mean, we've seen it all. Dunk tank, pie in the face, jumping out of airplanes. We have somebody who's about to walk across the country to support us.

Literally, he's leaving in April from Delaware, he's walking to California. It's going to take him months and months to raise money and awareness. like people have turned it into a fundraiser.

Wow, I I'm a little scared now that my team's going to listen to this and come back with ideas.

Yeah,

I can see you in a beard, I can see that.

That would take a long time. I saw the chefs in Philadelphia do some things. You have some strong support. Corporate support and other. organizations as well that have stepped up. What does it look like for an organization to step up?

I saw some really large organizations. Is that do they figure out ways to get their staff involved as well?

So one of the things I think that another thing that Alex taught us and gave us is people want to help if you give them a way, an easy way to do it, or a way that's within reach for them.

Right. A lot of people think, well, I'm not rich or I don't, I don't have a lot of time. So what we try to work with our biggest partners around is how do we work with them to create something in their company that raises awareness, raises funds. But really mean something to their employees, so their employees can participate if they choose to.

And we've had partners, no two of them look the same, but they've really, the ones that have been the most successful have really embraced it as part of their company, and have really worked hard to let their, all of their employees know at every level that Alex's is their charity, and that childhood cancer is their cause, and given them ways that they can participate that, don't cost them money.

They don't necessarily have to show up somewhere all the time. They can do a lemonade stand and the company will somehow support that for them. They can participate in our million mile in September and log miles and the company will support that. And it's just a great way for them to create their own community around purpose in their companies.

And we've had a lot of success with. Very big and small companies doing that.

have a final question here, and I want to for your time. I really appreciate it. message would you like to share with families currently facing the challenge of pediatric cancer drawing on your own experience and the mission of the foundation?

I think, what, one thing I keep saying, which is people do want to help. And it's very easy to feel like you're alone, and in some ways you are alone, right, because it's your family and it's really your day to day. But there are many people and many organizations that want to help you, and I would encourage them to reach out.

Sometimes it's a hard thing to do if we're not used to asking for help, whether it's to your neighbors who've offered, to your friends who've offered, your family who's offered, social worker at the hospital saying, Hey, I'm having trouble with this. Particular thing or organizations like ours, we get calls every day.

We have a team of family services people here who help families figure out how to get the resources they need. And every single family is different, whether it's financial, emotional they're looking for information on clinical trials, there are organizations that are here to help. And we try to make it as easy as possible.

So don't be afraid to ask for help. I

love I love being part of this community. I love the work that we're able to do. I also love for those people who are like, how much of the money is actually going to childhood cancer? I love the fact that you're actually working the phones right now.

Like you had to put your phone on standby because you who, you know, as the co executor are actually working the phones and answering the phones, which tells me. That you guys do value making sure that the money goes to where it's supposed to go. Yeah,

We all have to cover phone hours for the phones ring and we don't have like a, we're not paying a receptionist.

So whatever your job is at Alex is you have an hour of the day where you're responsible for answering the calls that come in and there's someone else too. So when one of us isn't eating, the other person can do it. So,

Wearing pink today because it's Valentine's Day, but not wearing the traditional yellow.

No, I

don't even have my lemon earrings on today. I am no yellow. I guess pink lemonade, we could, we can say, we can try to

pass that off. We could do that. Liz, thank you again for your time. I really appreciate it. And your work. I really appreciate it.

Alex's Lemonade Stand Foundation continues to make an amazing impact in the fight against childhood cancer and we're so proud to partner with them and support their cause. As we wrap up today's episode, remember the simple yet powerful way to contribute at ViVE and HIMSS. Find Captain, take a photo, then use the hashtag CaptainLemonade.

grab your friends, every smile in the photo, we're going to give 1 towards, Alex's Lemonade Stand Foundation, on your behalf. we appreciate the help of SureTest and CTG in helping make that happen. there's still room for more, partners. If you are interested in being a partner, reach out, let us know.

together we can make a significant contribution to ending childhood cancer. We look forward to seeing you, your photos, and bringing our community together for this great cause. Remember, each one of us has the power to make a difference. Thanks for listening. That's all for now...

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