E50: Dean Crowe on Rallying Support for Childhood Cancer Research

Dean Crowe, CEO and founder of the Rally Foundation, joins Timothy Chou to share the story of how one family’s childhood cancer journey inspired a national organization funding pediatric cancer research around the world. She discusses Rally’s focus on early-stage, peer-reviewed research, the importance of diverse fundraising and advocacy, and why AI, precision medicine, and faster risk stratification could help accelerate better treatments with fewer long-term side effects.

This episode is brought to you by BevelCloud—powering distributed AI in healthcare and driving the Pediatric Moonshot forward. Learn more at BevelCloud.ai."

Transcript

SPEAKER_01 0:03

Welcome to another edition of the Pediatric Moonshot Podcast series. I'm really pleased today to be joined by Dean Crow, who is uh CEO and founder of the Raleigh Foundation. She is an Auburn University graduate, Go War Eagles. She did an executive education at the Harvard Business School. Her early career was in commercial real estate and mortgage lending. She got her fundraising start as the campaign director of the Young Life's National Camp. But sparked by her friends diagnosis with brain cancer, she launched the Raleigh Foundation in 2005. She's grown up from a grassroots Atlanta community effort into a national organization with offices around the U.S. She's been named uh Onko Daily's top 100 influential women in oncology two years running. Uh welcome, Dean.

SPEAKER_00 1:07

Thank you. Thank you for having me. And War Eagle.

SPEAKER_01 1:11

Go War Eagles. Um yeah, I'm no Alabama fan, but I probably shouldn't say that.

SPEAKER_00 1:16

I'm not an Alabama fan. That's the truth.

SPEAKER_01 1:21

Uh let's start with the origin story. How did this happen?

SPEAKER_00 1:25

Yeah. So my husband was coaching um a baseball team, a travel baseball team of 12-year-olds. And he, our son was on there, Jonathan. And then there was a pitcher on there named William. And he and William got to be really good friends and kind of a coach player relationship, but it was really sweet. And William at the end of that season was diagnosed with a brain tumor. And Reed, my husband, was um, you know, definitely involved. I'd love to tell you that I took dinner, um, but I didn't. Um, but he had a good, I really knew nothing about childhood cancer. Um, but William had a good prognosis, and he had, you know, of course, he went through the normal treatment of brain surgery, chemotherapy, radiation, came out on the other side, was cancer free, um, and that was great. Um, and he was cancer free for about 18 months. And then he relapsed. At the time, um, I was teaching a Bible study, and several of the baseball moms were in my Bible study, and they one of them told me that William had relapsed and asked me um if I would come to a prayer circle for him. And I said, of course. And I remember driving up there, Timothy, and I was like, you know, praying, like, Lord, let there be like eight or ten people here. And I drove up and there were like eighty. And it was whoa, I was like, whoa, this is crazy. And it was 80, you know, moms, dads, kids. And literally we stood in William's front yard and we prayed for the family. And then when it was over, the baseball moms, we went up to Nancy, who was William's mom. And um, Becky Caraway said um to Nancy, one of the baseball moms, you know, what can we do to help you? And she said, I don't need food, I don't need my bills paid, I don't need my yard mode. Um, I'm just so angry at God because William has relapsed. We get one shot to save him, and if it doesn't work, he's dead. And so Becky said, then we're just gonna meet in your driveway every Monday, Wednesday, and Friday at 9 30 and pray you through treatment. And here I am, the Bible study teacher. I'm like, every Monday, Wednesday, and Friday at 9 30. And lo and behold, for about um a year and a half, every Monday, Wednesday, and Friday at 9:30, a minimum of six to as many as 18 women pulled up at the end of the Olsen's driveway. We got out of our car, and um, someone updated on whatever, wherever William was in treatment, and we prayed about that, and we got back in our car. And you knew you were part of something special because these were women who were all different face, all and we all went to different schools. We weren't all at the same high school because we live in you know, suburb in Atlanta, which has you know multiple great schools. Um, but but you just all but we all got along, but we were so focused on what was going on with William. And one day, this was back in the day when Keringbridge was like the main way people communicated. William had a terrible reaction to a blood transfusion and he almost died. And by now, Jonathan and William are juniors in high school. And um, I had never been to the hospital. Um, but I just really felt led that we that Reed and I should go. And I went in and I told Reed, I feel like we're supposed to go to the hospital. And he said, Um, great, call Nancy, see if it's fine. So I called Nancy and she said, Yes, would love for y'all to come. Oh, by the way, can you bring William a Curabean waste smoothie? And I said, Um, of course. So Reed told me, you know, he said, like, this is gonna be way harder than you think. Like he is really sick. And um I said, okay, so we went and got a caribbean waste smoothie. I didn't know anything about cancer kids, so I got I got, you know, the extra, extra large one. And we walked in to that hospital room, Timothy, and I mean, he was so sick. And I was like, oh my gosh, like this is horrible. And I Nancy took the Caribbean waste smoothie from me, and I'll never forget this. Um, she said, William, look what Miss Dean brought you. Just think if you drank all this Caribbean Whey smoothie, how many calories that would be? And I remember thinking, who talks to your junior son like this? And then she took out a little bitty Nyquel cup and poured some of the you know smoothie into this little bitty Nyquil cup, gave it to William. He drank it, and then he promptly threw it up. And so we stepped out of the room and Lee and Nancy, um, Lee is William's dad, cleaned him up, and we stepped back in, and I looked at Nancy and I said, This is so much worse than I thought. You have to tell me what to do to help you, and I will not make you dinner. Like we're past dinner. This is horrible. And she looked at Reed because they really knew Reed better than they knew me. And he said, Tell her what to do or she'll drive me crazy. And Nancy looked back at me and she said, Raise money for childhood cancer research. And I was like, not to be offensive, but childhood cancer research. I mean, like so much money is spent on cancer research in our country. And she said, not childhood cancer. And I said, There's a difference. And she said, yes. And I go, what's the difference? And she said, I can't, I don't know, but I'm telling you there's a difference. And I was like, okay, I was a journalism major, I like investigating things, I'll figure that out. I said, okay, so you want me to raise money for brain tumors, right? Because William had a brain tumor. Um, and she said, No, I want you to raise money for every family here. They need help and they need hope. And I said, Okay, but you want me to raise money for this hospital, right? And she said, no. And I looked at William, who was a pitcher, and I said, I'm 0 for three. Your brother just struck me out. And she said, Fund the breast research you can find. I don't care where it is. So I we left there and I um, you know, I dug in and I figured out that adults get breast lung, colon, and prostate cancer, and kids get, you know, a different kind of leukemia, mainly L ALL. They get all these different types of brain tumors that um, you know, that adults aren't getting. And then they get these solid tumors, neuroblastoma, osteosarcoma, ewings, you know, rhabdomyre, which are more, much more uh pediatric cancers. And sure enough, super underfunded, you know, not profitable for the drug companies. Um, so my first thing I thought is I would just go and tell the big organizations that they needed to be funding more childhood cancer or research, and that those conversations didn't go so well. So then it became kind of apparent that um that we needed to do something. And so my husband said, I think you're gonna have to start, you know, you're gonna have to start something. And so, you know, very organically, very grassroots-y, um, we started the Raleigh Foundation for Childhood Cancer Research. And um that was 20 years ago. And we have given away $47.5 million funding research across the world. Um, and really our sweet spot is we like to go in early. Um, we really like to, you know, fund an outside the box idea. Every grant from Rally is dual peer reviewed. Um, and we fund based solely on score. Um, you know, we don't fund because we think it sounds good. We are not scientists, so we have this incredible scientific medical advisory board that reviews our grants, and that is, you know, very helpful. Um, but thrilled with the progress that we've made. Um, we have, you know, we we have funded three, there have been six in 11 years, there have been six brand new drugs for first in use for kids fighting cancer. Um, and Raleigh has funded three of those. So we provided seed funding, which is great and very exciting. We have 20 active clinical trials that we provided seed funding for. And our goal is like to we fund it and we'll keep funding it as long as you're making progress, and it's all peer-reviewed. Um, and then our goal is for it to receive federal funding or a big grant from you know, one of the very large organizations that can help push it to where it will become a clinical trial and be translational. So 50% of our research has advanced to federal funding, and about 24% has advanced to a clinical trial. So that's all really very exciting, and um, you know, it keeps us motivated, and then seeing these kids beat cancer and then grow up. And, you know, now because we're 20 years old, we have kids that were, you know, in kindergarten when we met them or in elementary school, and now they're grown and married, and some of them are having babies. So it's very exciting. Yeah, yeah, it's very good.

SPEAKER_01 9:55

Well, you're batting way better than oh for three.

SPEAKER_00 10:00

I mean, and it's crazy if you think about it. Like literally, our mission was laid out in that hospital room, and that conversation was probably not even five minutes. It's probably like three minutes, you know, because they yeah, and that's and we've never strayed from our mission, which I think is really important. Um, we do do some family support. I did look at Lee after Nancy told me to fund research. And I said, What can I do for you? And he said, feed the families, they're hungry. And I was like, You're in a hospital, they bring food to the room. And he goes, They bring food for the patient. They don't bring food for the families. And he goes, while we can afford to eat, um, there are a lot of families that it is, you know, they really can't afford to eat three meals a day out um from the hospital cafeteria or from anywhere. So um we have provided more than 170,000 meals um for families in the hospital. So um, so that was kind of the other thing that was important. And it's crazy, people really appreciate those meals. Um, and we also do stock the pantry where we can we the hospital will give us, you know, some shelves that we can put food on for the families to have for free. So yeah.

SPEAKER_01 11:14

You uh you mentioned a little bit about international, so you're funding international. Yeah, talk all about your international work. Yeah.

SPEAKER_00 11:22

Yeah, so we anyone can apply for a rally grant. Um, we are totally open to wherever you are. And again, it's all it goes back, Timothy, to that um, you know, peer review process. We have two medical advisory board members that score each grant and then we average them together. It's like golf, low score wins. It's we fund similar to the NIH. Um, so if you get the score and you are, you know, you're in another country, we go ahead and, you know, we totally want to fund it because you know, who knows where the cure or the better treatment is going to be found. Um, and it's really fun to see the, you know, I would say the childhood cancer community, research community in general is becoming much more um embrace of, you know, collaborate collaborating with international partners, which is great. Um, because, you know, in different countries, they're able to move the needle in a different way than we are. Um, sometimes the science goes a little bit faster, um, and we're able to, you know, help fund some clinical trials where they're able to get it um inpatient sooner, and then we can take that data and bring it back to the states and then open up clinical trials here. Um, or we're able to do some basket trials. Um, you know, there's all there's good and bad with everything going on, but you know, you want to really take a part of the good and just make it work for the kids.

SPEAKER_01 12:46

Just out of curiosity, any countries in specific have been more go to the top of the list? Uh yeah.

SPEAKER_00 12:53

Um not real, you know, European countries, but then also we definitely have some African countries. Um well Canada is, you know, Canada does great work. So Canada Canada's probably the top of the list, honestly, for what um and then and then it would be European and African countries. Yeah, yeah. I'm always like we should do a site visit.

SPEAKER_01 13:18

Yeah, agreed.

SPEAKER_00 13:20

Yeah, but I don't think that's what the donors want me doing.

SPEAKER_01 13:23

So no. Uh, you know, you're you're obviously an expert in fundraising. Uh talk about the future of fundraising in pediatric cancer. What do you see?

SPEAKER_00 13:34

Yeah, that's a great question. Um, you know, I think you've got to have um uh in order to be sustainable as an organization, you've got to have a diverse funding model. Um that, you know, where there are things that the grassroots can do. There's also corporate support. Um, there's private family foundations. There is, you know, the um grassroots is really important. Um, and then, you know, and then we have collaborations where we will, where we rally, we'll partner with other foundations um to work together um to advance a research project. So I think you have to have, you know, a model that that is very comprehensive. You don't want to count just on corporations um or sponsorships, and you don't want to um count just on the grassroots, and you don't want to count just on, you know, collaborations. So I think it's all working together. And I think that's the future. If you're willing to be diverse in how you do your funding, unless you happen to have a family private office, which rally doesn't happen to have one of those. If anyone wants to give one, we'll take it. Um, but uh we're open, we're open. But if you don't, then you know, diversifying your funding and looking at that and being very um intentional in making sure that your funding is diversified out, how you're getting the money in is diversified is really important.

SPEAKER_01 14:57

Can you comment on do you think it's getting easier or harder to do this? You've been at it for 20 years. What is the next 20 years?

SPEAKER_00 15:06

I think, you know, I mean, you know, definitely when things are how the economy is going um is definitely um important. I mean, we just, you know, we just know something like the price of gas is gasoline is just really going through the roof. And you you do think like there is a huge part of the population that's really gonna affect. Um, I mean, sincerely affect, and there's part of the population that it it won't affect as much. But um, but you have to be, you know, aware of of what's going on economically within the country, because the vast majority of our funding does come from the United States. So, you know, we are aware of what's going on, and then you need to be aware of what you are asking your donors, you know, to do um and and factor all of that in. So I see it, you know, the economy just like life is just an ebb and flow in a circle, and it goes you know, it's there's nothing new under the sun. So, you know, it just depends on what's happening under the sun, how the fundraising is going to go. You know, Americans are overall very generous. Um, and so I think, you know, we found we have found during some downturns in the market, um, if you give them something to rally around, they really will rise to the occasion. So um that is really hopeful for us, um, if you will. So um it's but it's not, it's you know, it's not easy. You have to be, I think we have a thing at Rally that we say, you know, we adjust and we readjust, and that's what we do. You know, you have you can't, we're not like this is the only way, you gotta do it this way. We're like, no, you gotta adjust and readjust. So that's what we do all the time.

SPEAKER_01 16:45

Uh uh, you know, AI is in the news everywhere all the time.

SPEAKER_00 16:50

Yes.

SPEAKER_01 16:50

Uh what do you what do you see the role of AI in accelerating diagnosis and treatment of pediatric cancers?

SPEAKER_00 16:59

Yes, great question. AI is super, I mean, it is a great tool. Um, and we are at Rally very embracing of AI and what it can do and what it can mean for the science. Um, I think, you know, train training the large language models is really important and letting them, you know, kind of making sure that what's going in is coming out is really good information. I don't I think we always need to check things as humans. Um, but I think, you know, like you have um, you know, computational biology that's going on. I think you can feed in so much data. Um, what I would love to see happening, um, which I think is probably a little bit of low-hanging fruit with AI, is how can we put in, you know, we have collected all this data on from different clinical trials, and then we have decoded the genome, and then we have all these different biomarkers, and you know, it all affects all the different cancers. Um, I think it would be great if we could do a risk stratification for all the different types of childhood cancer so that when, so that we could, you know, our mission is to, you know, raise funds and awareness so that we can have better treatments with fewer long-term side effects. I think if we could risk stratify all the different types of childhood cancer, then we would have fewer side effects, fewer long-term side effects. I think we also would, because we would know that certain, like let's just take, you know, Ewing sarcoma, for example, it is not risk stratified yet. But if you knew there were certain biomarkers in there that you would need less treatment, then let's do that. But also if you knew you had this biomarker and it did make relapse or it made treatment harder, then you would know we need to up the ante with this, you know, research. They've done a really good job with medullose. You know, I feel like um restratifying it, they've done a great, a great job with ALL, you know, they've done um a good job with neuroblastoma. So I think that there's models out there, but I do think with AI, there's a way to make it happen faster. Um, and that you can get, you can put all that information in and get it back out and start to see what are those trends. I also think, you know, as scientists, it's important that um that like in something like that, like some of the knowledge is really good. Um, it may not be perfect, but we can do version one and then we can do version two, and then we can do version three. Um, I also think we can get to where, as you know, in our medical field, to where we can also get too granular. Um and and then, and then you get stuck for that like super duper granular case. So I think really approaching it from a very, you know, high level, let's just start, in a sense, I would see that is high-level low-hanging fruit. So let's, you know, kind of look at what the oxymoron is there and then move forward with all these other diseases, putting the information that we have into AI, you know, and pulling out what is the low-hanging fruit that we just know here are these characteristics within this childhood cancer that make you a low risk or make you a higher risk or a medium risk. Um, I would think that that would be amazing.

SPEAKER_01 20:19

Yeah, yeah.

SPEAKER_00 20:20

And very practical. You know, I like for I like for science to be practical. Um, kids. Yes, yes. Yes, yes.

SPEAKER_01 20:34

I think you have a little engineering gene in you when you talk about version one and version two.

SPEAKER_00 20:39

Yeah, yeah. I mean, well, I'm just like, let's just give version one and then we can move forward. Because what's funny is we can get version one, isn't it crazy how people like then want to go and see what they can, but like getting them to commit to version one, whoo.

SPEAKER_01 20:56

Yeah.

SPEAKER_00 20:56

Well, if I go to the drawing board and I just tweak this or do no, no, no. Like, what is the, you know, what are the characteristics? Let's move this, let's move it forward. Yeah. Um, and you can harmonize that data. You know, you can um, I look at what we're doing, um, what Sam Wolfschenbaum is doing with the pediatric data commons that we helped to fund when it was just a novel idea for him, and how much data is there? So, like we have all this data, and I think the big advantage of AI is it can take all that data very quickly and you know, make sense of it, if you will, find those commonalities and you know, and and also find those outliers um and give us the information so much quicker um than before. So that's my thought.

SPEAKER_01 21:46

Well, and I think in a standardized, organized way, correct. Computers are good at repeating. Humans are not very good at repetition. No, computers are repeating.

SPEAKER_00 21:57

No. Well, and then you know, and then you also have the whole um Precision medicine, you know, personalized precision medicine, which will be AI driven for sure. I think that that is really important. It is not, you know, I think it's really important that we realize it's we're not, it's not the only thing you rely on, but um, but it is a, you know, it's like a tool in the toolbox that and do you want to use it? I think about like what um First As Ascent is doing, Dr. Diana Azam and Jim Foote. You know, they have over 200 FDA-approved drugs, some are chemotherapy, some are not, that they can run your blood or your you know, biological tissue against. And it will say it spits out like here are two or three different treatment plans. Here's the highest likelihood, here's the you know, percentage that potentially would be a cure for you. And the papers published on it of the success of when someone follows what you know, the AI, it's basically an AI model that they've built. Um, you know, of course it's proprietary, which it should be, but I mean, like it should be part of the conversation, you know. I mean, and and you also think too, from uh, you know, saving money for our our healthcare system, which is, you know, so expensive, you know, if you did that then and you looked it against the standard of care, um like where are you gonna save money? And then also why would you be giving drugs that aren't gonna work? Like against the biology? Like why? Why? You know, just because it's standard of care, no. So again, I think, you know, our science, our AI, like has passed kind of how traditionally how we do things. So, how can we get it to catch up and not be afraid and not take an eternity? Because I think the way we used to do it, you know, and having been in this field for 20 years, I've seen tons of changes. And just in the last five exponential changes, which are positive, in my humble opinion, like how can we get that the old way to catch up with the new way and not be afraid? You know, because I do feel like we run around a lot afraid. And you know what? This is what I'll say childhood cancer, it is not afraid, is not afraid of our kids, it is not afraid to go in and destroy their bodies, it's not afraid to go destroy these families, and we need to be much more aggressive in we're coming for you, and not we're gonna take 10 years to get to you. Because by the time those 10 years pass now, Timothy, with what we're doing, it's old news. It's old news, amen. Yeah, it makes me it makes me crazy, in case you can't tell.

SPEAKER_01 24:52

I I understand completely why you are the CEO of this organization.

SPEAKER_00 24:56

So well, I mean, we just have so much information and now we have a way to, you know.

SPEAKER_01 25:02

We do, we do, we absolutely do. Um hey, for our listeners, if they want to know more about Rally Foundation, what you guys have done, if they want to contribute, what should you tell them to do?

SPEAKER_00 25:16

Yeah, totally reach out. Um, you can reach out to um Katherine at rallyfoundation.org and she will help you, or Courtney at rallyfoundation.org and say you want to get involved. You know, we have lots of different ways to get involved. And we also, you know, love when someone comes to us and they are particularly interested in a particular either cancer, pediatric cancer, or a certain model of how to treat cancer. Um, we love to match up your fundraising or your donations with what you're interested in. Um, we find that very um exciting. So um, you know, and really we can take um we love the small donations. I still love when we get those little handwritten checks for $25 from, you know, the great grandmother. I just think it's adorable. And it, but also I think that could be the $25 that cures cancer. And of course, then we love to get the $25,000 check and the, you know, I mean, we love to get it all, you know, $250,000, we love it. But, you know, the one thing I will tell you if you donate to Raleigh, we take care of the donor dollar. 93 cents of every dollar given to Rally supports our mission. So we are lean and mean about how we spend our money. We're very frugal. And we have a perfect ratie from Charity Navigator, which is a watchdog, um, making us the highest-rated childhood cancer charity um in the world, funding research worldwide and providing family services. So we take care of your money. Um, that's the one thing I can say. And I think we have stats behind it that prove that we do that. We also are involved in the national advocacy scene. If you have connections with any representatives, um, you know, U.S. representatives would love to talk to you or senators. Um, we are the lead advocate for the Department of Defense. They have a $1.5 billion medical research program. And through our advocacy work, we have been able to secure about $317 million in funding for cancers in children, adolescents, and young adults, and really moving the needle that way on the national level. So that's brand new funding. And they fund, they do also like to fund outside the box ideas. So it's kind of fun. Rally likes it. We're very similar to the DOD and what we like to fund. So a lot of times we'll come in and fund something, you know, kind of outside the box, and then the DOD will fund it, and then the NIH funds it. So I kind of laugh. It's kind of like we start slowly, and then that's kind of the progression that we see a lot. But um, if you're interested in advocacy, um, your voice matters greatly. Um, I can't even tell you how important it is that your representatives, your senators hear from you, and you never know which senator or representative um we need to be in touch with. So that's another way that you can help us is with your voice.

SPEAKER_01 28:19

Well, hey, Dean, thanks. Uh thanks for taking time out of your day to be on our podcast. Really appreciate it.

SPEAKER_00 28:27

Thank you for having us.