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(Intro) ultimately, we want to get to the day where cancer in children is no longer a life threatening disease, but something that can be solved.

My name is Bill Russell. I'm a former CIO for a 16 hospital system and creator of This Week Health, where we are dedicated to transforming healthcare one connection at a time. Our keynote show is designed to share conference level value with you every week.

Now, let's jump right into the episode. (Main)

Welcome to Keynote, where today we are honored to welcome back a truly inspiring leader, Liz Scott, co executive director of Alex's Lemonade Stand Foundation. For those of you who may not know, ALSF began with a simple yet powerful idea. Liz's daughter, Alex, was just four years old when she started a lemonade stand to raise money for childhood cancer research.

Thank you for the incredible work you do and welcome back to the show.

Thank you. I am very excited to be here. You guys are just doing phenomenal work with us.

For us, it's a sense of purpose every single day, and I want to talk about the power of community and our new yellow hat club that we founded last year.

So the lemonade stand or the foundation has grown from one lemonade stand into a movement. How have the grassroots and corporate communities helped accelerate this impact?

She just wanted to do something to help other kids like her. And she inspired people very organically to set up lemonade stands and to do what they could. a part of it. And really since then, now, 25 years later, that has not only continued, but groaned. And efforts like yours and the lemonade stands that go up across the country, all of our corporate partners, people are really just going into their communities and saying, this is a cause that needs your help.

And here's a way you can support. And it's been very powerful. It's truly enabled us to fund the research and make the progress and help the families that we've been able to help.

What does it mean for the Foundation to see industries beyond healthcare providers, such as healthcare IT leaders, step up to fund research and support programs for families?

I think the yellow hat concept is a really fun and creative idea. And at the end of the day, It's making a huge difference. It's driving change. It's allowing us to do things to change the future for kids with cancer. And it's working.

The impact of 500, 50, any amount that is given, when we think about we specifically chose 500, how does money like that help a family facing a cancer diagnosis?

And all of those hours together, if you multiply that by what we've raised, has resulted in 1, 500 research projects looking at cures for virtually every type of pediatric cancer. We also offer family support services, and 500 actually goes a long way for our family programs. help families travel to care.

So 500 is. A little below average, but a typical amount that we might need to provide to get a family to go to a hospital for an innovative therapy. We have a sibling support program. So 500 would support about 10 siblings through that program and us being able to provide them with comfort and empowerment and care and educate their parents on what's happening with siblings.

When the new programs have emerged, and you've spoken about this in your previous interviews with us, that, hey, we realize that siblings need help, we realize that travel's a part of it.

When a new need pops up that you have not encountered before, how do you operationalize it? How are you getting it into motion in a way that allows you to serve beyond the reach of what you started with?

It's a great question. We have a constant list of gaps and needs that we know are out there. And as we anticipate raising more money, or as we raise more money sometimes, We know that we have a place we want to spend them and we try to be ready to spend it.

So we'll start working in advance so that when we have the funds, we're ready to mobilize them and use them. And I can give you an example. We funded these project called crazy eight, they're 5 million projects. So that was a huge commitment, right? We funded seven of them, and then we realized. There were some, we were trying to solve the hardest problems in pediatric cancer.

As a growing topic and a huge need that didn't have a lot of funding. We wanted to fund one of these 5 million projects, but we knew we didn't have the money just yet. So we actually went out and actively raised that money from some individuals. In the meantime, we got this RFA, we got the process ready.

When we raised the money, we put the RFA out there. And not only did we get one impactful project, we ended up getting two that were so complimentary and impactful that we

Finally just said this is the right thing to do We're going to commit to this, and now we're going to raise the money over the next few years to make sure that we can keep that commitment to these projects. They're incredibly impactful and really important in the space of predispositions.

What are you seeing today that is just, out of this world and things you didn't expect and you're like, dang, these groups have donated all this money from these ideas. You talked about the pet contest and so many fun things. What are you seeing the last year or so that has really just sparked a little creativity that makes you realize, wow, there's so many things we can continue to do to raise money.

Honestly, I think what you guys are doing is really creative and smart because you're building community within your community. You're giving people like that little extra reason to make a donation. And it's visible. So it's almost its own sort of awareness building for Alex's Lemonade Stand and Childhood Cancer.

We have a big event in April on Tiltify where we're getting content creators to commit to streaming to support us. And I see that as a growing opportunity for

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I love that. And then when we think about how the foundation has helped evolve research and the reach into pediatric cancer, what are some of the new breakthroughs or clinical trials that you've been able to help fund?

So in kids with predisposition, the 1st sign of that sort of circulating cancer, they would give them a vaccine hopefully to stop the cancer from growing, like preventing it. That is huge. But that's using the bodies. Ability, like boosting the body's ability to fight it off to really smart ways that they're targeting cancers based on, the exact makeup of that cancer, looking at the markers or what's driving that particular cancer and then developing something that can shut down the driver, take take the driver out of the seat and stop the cancer from growing those types of treatments.

I believe we're going to get there. We've had some successes and I think there's just more successes to come.

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So that lens into the survivors and then their long term journeys is something obviously we want to continue to discuss and track and understand as we raise money for the foundation. How do you decide which research to prioritize?

We have a few ways we do it. So we have a scientific advisory board made up of 10 researchers

They guide us. So we have conversations with them around what's happening in the community. We have ideas sometimes based on things we're seeing and we'll say to them, what do you think about this? How can we help solve this problem? Once we come up with a gap that we think we can fill with their guidance, we develop guidelines, which basically is like a request for applications.

We everybody scores them and then we look at how things come out at the end and the. One set score. Excellent. We really hope we have the funding to fund and we will fund them and then. They do progress reports and final reports. All our grants are multi year. We bring them together oftentimes once a year to discuss and learn from each other.

But really what drives our decisions is recognizing gaps and then also relying on our scientific advisors to help us figure out the best way to solve those gaps.

What are some of the biggest gaps in pediatric cancer research today?

Other than the obvious, which is the lack of funding if we had all the funding we needed, what are the types of things we could address?

So looking at what we're doing now, what's on our wish list for the future. I would say more money to the really hardest to cure cancers like brain tumors, in children, I would say is at the top of the list. In fact, we're trying to put together the funds and an RFA for that.

Also, looking at survivorship, like you mentioned, understanding it more. We've come a long way with survivorship support and survivorship medicine, but from when I talk to parents, it seems to me like there are significant gaps from the parent's perspective or from the survivor's perspective that really are not being met.

There's an access issue. I mentioned we help families travel for care. The options you might have if your child is relapsed or has a hard to treat cancer would most likely be different depending on where you live in the country. Globally, there's a huge access issue. The survival rates in the U.

Are there reasons that some kids with the same cancer survive and others do not? That's something that's been studied, but there's probably more to be learned in that area. And then there's all the financial needs

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and all of the resources that families need to get through this.

When you think about that travel and financial burden and the ability to remove some of the barriers to care for families, your travel for care program has been a game changer. It's evolved over time. What are still some of the biggest needs for families? And why is it so hard for them to access funding either for treatment or for support?

That is not met is financial needs of families who maybe were fined before, maybe middle class families, or maybe they were already struggling financially and just getting by or not getting by. And then you put a childhood cancer diagnosis in there and very likely that a parent can't work.

If it's a single income household, it's exceptionally hard because of the demands on a parent. Bringing your child to and from the hospital, making those appointments, and then you have your other children to factor in. Do they, can they come to the hospital with you, or do you need to get coverage for them?

There's a lot that happens that can really devastate a family financially. As far as resources go, it is a problem. There's quite a few resources out there. But connecting to them is, can be like a part time job for a parent. So we now have a full time resource navigator, and her job is when somebody reaches out to us, which happens daily.

And then she'll connect them with them so that they already know they're going to be getting support. We also are creating an online tool. That's very close to being finished. Really make it easy for parents to find them if they want to just go online and find those resources themselves and connect to

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I think the financial needs, though are huge, and they haven't been met because they are so enormous.

A lot of it, I think, has to do with policy, reimbursement, insurance, different resources. How, beyond raising money, does a community like This Week Health and our 229 CXOs. How do we help influence policy and create a better advocacy and support program for pediatric cancer patients?

Like, how do you want us to mobilize to impact beyond fundraising?

So if we could protect more money. Just for pediatric cancer, which is the number one disease killer of kids in the country, that would be good start so that researchers know if they want to study pediatric cancer, there's money to do I would say there's a lot of work to be done on drug development in the industry that is focused on drugs for kids with cancer, not just repurposing adult drugs.

There's not enough. Drug development that's dedicated to children with cancer. I think there's, probably a more complicated system than to just say it comes down to the fact that they're not profitable, most likely because of the rarity of childhood cancers in general, but there has to be a way that we can work with industry to develop just for kids, right?

They're kids getting kids cancers. And then I would say probably better understanding and utilizing the resources that are available in the public sector through whether it's state. Insurance systems, making sure that families who have public insurance or state assisted insurance are eligible for the same things that their friends who have private insurance are eligible for.

Also making sure that private insurance can't deny potentially life saving treatments just because maybe they're experimental. That just doesn't feel right to me. There's a time and a place to deny, but I don't know that it's when. There's a treatment that could potentially extend or save a child's life.

To grow. What's your vision? What do you want to happen in the next five years?

We do want to continue to grow and it's not that we love growing because it's more work and it's more complicated, right? And in many ways, it's more responsibility as an organization, the larger you get in this space.

But because of the needs that are so vast out there, we want to be able to tackle some of the problems I talked about. We want to be able to think about, what would it look like to help solve the drug development? What would it look like to really be able to help families financially?

And the more people that hear about it, the more lens that they can see through it as well. Because we do, we talk to pharmaceutical companies, we talk to policymakers and the ability to say, Hey, what are you doing in this space? Even as opening and asking the question, it leads to a conversation that maybe no one's even thought about.

Because. Unless you're experiencing something personally or have been exposed to it through something like this week health, you may not even know what's a thing because it hasn't happened to you. And yet people love to create meaning in their lives and have a purpose behind it. And when it's Childhood pediatric cancer research.

We put an extra candle on the cake every year to Celebrate Alex and what she brought to that family. What are some recent stories of impact that you've heard that we can share with the community? For me

it just, the moments where, and this sounds silly, but on my Facebook feed this morning.

And I saw a post from a mom who is on vacation with her husband and her son, and she posted a whole bunch of photos and videos of them having the time of their life going, him, their son going down a water slide, just enjoying this vacation. The whole point of her post was they were having such a great time and she can't help but think that he shouldn't be here because he basically was considered incurable.

and I know that family benefited from a trial. I know exactly what trial it was that Alex is funded. And I just thought, wow I just, went there to look for something else.

And this came up in my feed and. It's amazing. It's amazing.

What would she say 25 years later if she saw what she created and what you have done? What would Alex say about all of this today?

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It's so hard for me to imagine, right? Because I think 8 year old Alex, right? I think I know what she would say, which is, It's good, but we need to do more and that was her nature and I guess it's my nature.

I think it's definitely my husband's nature. They had a lot of similarities in that way. And then I think what would 29 year old Alex say? That's how old she would be

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that's harder for me to imagine. But I think

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But, it's hard for me to even picture a 29 year old Alex, especially as a mom with three boys I can't imagine having a 29 year old daughter, like such a different energy, at least her compared to her brothers when they were younger.

And with that, with knowing that Alex is okay, we have to do more, keep it going, mom, keep it going community.

What message Liz, do you want to share with? Our community of health I. T. leaders who have supported the foundation through the yellow hat club and want to continue to do more. What do you want people to know from you today?

First of all, thank

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because it literally drives everything we do. And secondly, I think there is more to be done.

We can even talk through that and help them figure out a way to make an impact.

And we continue to think of creative ways as well to spread the word and fund the mission. So we will be coming up at VIVE. We'll be at HIMSS. We have our meetups. We have our yellow hat clubs where if you buy one for 500, you're in the club.

If you show up with your hat on, we donate 25. We have Captain's Campaign, or if you take a picture with Captain, Holly's service dog, and you have your hat on, it's an even Otherwise, amplified impact. We're doing a golf tournament the day before him starts on March 2nd. Oh, I heard that. In Las Vegas, right?

In Las Vegas, all proceeds go to Alex's Lemonade Stand Foundation. I believe we will exceed our 200, 000 goal this year, which puts us at 350, 000 for the continuum. It will always be our philanthropy of choice. It's amazing. It's helpful. Always support this. And I'm hopeful someday we have you at an event.

Thank you so much. That really means a lot to me. I appreciate

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Oh, likewise. We are just so grateful to know you. Thank you for being a part of our community. And for everyone who's listening, take this to heart. You may not have children. You may not have experienced a child or child in your life with pediatric cancer, but it's real and the research and the support are necessary.

And we are here to help. And if you don't know where to go, Call us. Reach out to Liz. We'll make sure we get you connected with a way to make an impact and a difference and keep fighting to find a cure for childhood pediatric cancer. Liz, thank you so much for being with us today.

Thank you.

Thanks for tuning into keynote.

That's all for now.