E45: Shaving Heads, Saving Lives: Community, Innovation and the Cure with Kathleen Ruddy

In this episode, Kathleen Ruddy of the St. Baldrick’s Foundation shares how a grassroots movement—shaving heads in solidarity—has grown into one of the largest funders of pediatric cancer research. She discusses the complexity of childhood cancers, the urgent need for better treatments with fewer lifelong side effects, and how AI could accelerate diagnosis, personalization, and drug development. The conversation underscores a powerful truth: solving childhood cancer will require both bold scientific innovation and collective action from everyday people

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_00 0:14

Good morning, good afternoon, good evening, everyone, to another edition of the Pediatric Moonshot Podcast series. Today I'm very pleased to have Kathleen Ruddy here as our guest. By way of introduction, she got her bachelor's from LMU, or for those of you who don't live in California, the Loyola Marymount University. She spent her early years in various nonprofits, including the American Red Cross. She went on to lead major gifts at CureSearch National Childhood Cancer Foundation. And as I have read the story, and maybe you'll correct me, Kathleen, on her first day, she was redirected to run the fledgling St. Baldrix events that CureSearch was incubating. Ultimately, she was named Executive Director at St. Baldrix in 2004 and then CEO in 2013. St. Baldrix is the world's largest NGO funder of childhood cancer research. As the computers are telling me, she has raised nearly a billion dollars across her career for nonprofits. So we're very happy to welcome you to the podcast series here, Kathleen.

SPEAKER_01 1:32

Thank you for the warm welcome, Timothy. And we're so glad to be able to share our mission with your audience.

SPEAKER_00 1:39

Great. Let's just kick it off with uh, you know, what what is the history of Saint Baldrick's? And I now know why the name's the name, but can you tell people why the name is the name?

SPEAKER_01 1:53

Well, um, for anybody out there who's wondering, there is no real Saint named St. Baldrick, but we like to say all of our volunteers are saints who are lining up to help kids with cancer. Um, our organization was founded by three gentlemen who all happened to be Irish, and they wanted to give back. They determined that they wanted to do it for kids with cancer. One had a um very exaggerated mane of hair, which they gave them a lot of grief about. And so they decided to shave that hair, um, shave him bald in solidarity with kids with cancer since they are losing their hair during treatment. And they basically commandeered their industry's St. Patrick's Day party. So St. Patrick's Day became St. Baldrick's Day. Um, that first year they recruited 20 guys to shave their heads. Back then, it was the idea was to do it once and be done. And, you know, but they pat themselves on the back, but they saw how much it resonated and how generous people were and how excited they were and how they wanted to do it again. So here we are, you know, 20, we're going into our 27th year, and uh we funded$369 million in research by shaving heads that way.

SPEAKER_00 3:09

Wow. So you were before what was that, the ice bucket challenge?

SPEAKER_01 3:14

We did exist before the ice bucket challenge. Um, and that was an incredible movement, and everybody's looking for the next ice bucket challenge, right? Um, everybody wants an idea like that to catch on.

SPEAKER_00 3:27

Yeah, yeah. So uh I I read, I believe you have a personal connection to the mission. Can you talk about that? Yeah.

SPEAKER_01 3:35

Well, it so it's interesting. Um, I now have many, many friends, obviously, whose children are fighting cancer and kids that have become important to me in my life, and um as all the kids we serve are. Um my family has a lot of a very strong cancer history because we have a gene mutation, but research has allowed us to find that out. But we don't yet know um as much about pediatric cancers and the correlations between them. And so it's evidence that more research is needed in pediatrics. But years after I started in the work of St. Baldrich's, I found out that one of my childhood friends was a child of cancer survivor, and she used to say, I only have one kidney. And as kids, I guess we were wildly incurious because we never said, Why do you only have one kidney? And um, but I give thanks every day that she is here. And um, I didn't realize, like I said, until I was into this journey with St. Baldrick's, that um part of my childhood would have been very different had she not been there.

SPEAKER_00 4:48

Wow. Can you talk a little bit about, I mean, you know, what what's the things, what are the research, what what is St. Baldrix focused on as part of their mission?

SPEAKER_01 4:58

Well, um, we we do pediatric cancer research exclusively, but there are cancers that are classically considered pediatric cancers that adults are now getting, and kids are also getting some adult cancers. And so where those cross, we we will research those as well or fund research to those as well. I want to make sure your audience knows St. Baldrick's Foundation isn't doing research. We are funding it at research institutions. But we fund um every stage of research from bench to bedside, um, basic science, translational, clinical trials. We fund infrastructure grants, we try we fund uh Summer Fellows, which allow medical med school students to work in the care in the lab of a seasoned pediatric oncologist for summer. We hope to get them excited in a research career and to get them interested in pediatric cancer specifically. Um we fund obviously fellows to take newly minted doctors and turn them into researchers too. Um when we started the foundation in 2005, our first year, as an independent charity, we learned that there was going to be a shortage of pediatric oncologists in the US within 10 years. And so that lit a fire under us to make sure we change that reality and that we start um training young doctors to also be researchers. So we've been really um big on all those things. We do a lot of collaborative research. I mentioned the clinical trial network. Um, and now we're funding bigger grants, um, RFAs, requests for applications, we call them, where um either a single family or a group of families may come together to either fund or to raise the funds for bigger projects. You've probably heard in and know this from your own work that research because of the dearth of money, they often have to break down a much bigger project into small parts and hope that they get from project from step one to step two to step three and they get the funding at each stage so they can continue. And this allows them to do a bigger project and bite off something bigger and hopefully make more progress more quickly for kids.

SPEAKER_00 7:21

Wow. I I gotta go back to a comment you made. Uh, there are pediatric cancers that do not appear in adults. Can you talk about that? What what is what are examples of that?

SPEAKER_01 7:31

Well, there are most pediatric cancers are exclusive to children. Um, neuroblastoma is one, um, rhabdomyers sarcoma, there are many. Um, osteosarcoma is predominantly um kids and teenagers. You do see a few adults here and there, but it's classically considered a pediatric cancer. Um, and there are many like that. There are, um, I asked a researcher one time, you know, how many pediatric cancers are there really? Because I'm in it now 25, 26 years, and I'm still hearing. Last week I heard about another one that the it was like the long, the name was so long, it was like supercalifragilistic exviolinocious to me. And I'm like, what the heck is this? And it's yet a cancer I'd never heard of before. And they say, you know, when you break down all the macro types and the subtypes, you've got at least a hundred different types. And that's the same as in the adult cancer world, um, which, you know, adult cancers, you think of prostate cancer, breast cancer, lung cancer, things that are, you know, we kind of have better ideas about how they come to be in a person. Um, but you know, kids are not just little adults, so we can't just downsize the dosage of something. You know, the disease is it's it's a cancer, but that's really more defined by how the disease behaves. But the the the each each cancer is unique, and then it interacts with each child's genetic code differently, too. So you might think of, oh, we need more weapons with which to to fight the cancer, but you also need them personalized to every single patient. And that gives you some idea as to how complex a problem cancer is that we're trying to solve.

SPEAKER_00 9:21

Indeed. You you made the comment that some of these are appearing in adults, these pediatric cancers. What yeah?

SPEAKER_01 9:28

Yes, there are um pediatric cancers that are appearing in adults. Um, and I'm not an expert in all of those, but we are seeing it. Um, just as you know, we're funding a project with the melanoma research alliance. Melanoma is traditionally considered an adult cancer, um, but there are kids who get it. It's rare, but they do get it. And if you're that family that gets that diagnosis, you want there to be a cure that's not going to diminish your quality of life that it needs to save you, but also preserve your options for the future. And that's one of the challenges, Timothy, that we see with pediatric cancers is because these young bodies and minds are still developing, when you poison, burn, um, or cut out with chemo um radiation and surgery does um you are gonna have lifelong effects. You politely call them late effects, but they're scars you carry with you throughout your life. And many of them can impede the quality of your life and impede your opportunities and your options for life. So we're survival is goal one, but then it's uh high-quality survival, is what we want for every child.

SPEAKER_00 10:47

Yeah. Um, you know, AI is in the ether right now. I mean, everybody's talking about it. So, you know, what do you see the role of AI as an accelerating diagnosis and treatment for pediatric cancers?

SPEAKER_01 11:03

Well, when you think about, you know, I hear stories all the time about parents who knew something was wrong with their child, they go into an ER or they go to the pediat the pediatrician and they're doing tests, and they're typically testing for things that it is more statistically likely to be, because amongst the realm of childhood diseases, cancer is more rare than a lot of the other things that you know a certain uh symptom may indicate. So they're not testing for that early on. So you start to think about the power of AI and for uh machine learning to kind of back up the doctors and to say, here are other things that it could be that maybe bring cancer into the equation sooner. So you're not making six trips to the ER before you get a diagnosis, but maybe you figure out a step one or two, and that gets the child into treatment sooner, which means disease is less advanced and so forth. Um, so there's early diagnosis is huge, but getting more accurate diagnoses and also being able to aggregate all of the child's labs, their MRIs, their CTs, to be able to study all that, see things that potentially a doctor might miss because they're trying to process so much so quickly. Um but to to suggest, oh, not only here is a more specialized treatment, I've heard many cases of kids over the years who they thought it was this diagnosis and they treat them for that. And later on, I have um friends whose daughter was diagnosed over 25 years ago, and they at the time they thought it was a certain brain tumor, and only years later, after they learned more about her tumor, did they find out, um, and this was long after she had passed, that it was entirely different brain tumor that she had. Wow. And so it says a lot about the pace of research that they're better able to do that, but we want those benefits now while that child's still here. And so being able to get more specific and accurate diagnoses, um, I think being able to look at the characteristics, uh, tumor characteristics and molecular markers is huge. Um I'm not a scientist, so I marvel at how scientists are able to digest what they do, but I would still want a backup team. If I was the most brilliant researcher and scientist in the world, I'd still want to bring every tool I have to the fight to make sure that I'm treating that child as well as possible. I see huge potential in the ability of AI to look at a child and all of their specific characteristics, their response to treatment thus far, um, their genetic code, and say, you know, if there's three different treatment options, well, this is the one we that is going to be most efficacious for this child. And that, or this one is going to be the least damaging in terms of creating more um a poorer quality of life during treatment and after treatment. So I think that's huge. I think there's huge potential in drug development and discovery by using AI to help. Um, drug development is obviously something that, you know, we need more efficacious drugs, but it's very rare that we get a new drug in pediatric cancer. And I look at the realm of um just the world of drugs that come out all the time in adult medicine because one, there's more patients who are sick in the adult world, but there's more research going on because of that, and there's more money to fund research for those kinds of cancers and so forth. And so one of the big hangups to getting drugs tested in children is, you know, drug makers, and I get this because they're trying to recoup their investment on a drug, but they don't want something to be to penalize or limit their ability to use it in adults because maybe they have a terrible reaction in a child. Well, if we can use AI to determine is that drug gonna more likely to be safe and effective in kids, then it it takes some of the risk away for the drug makers. It makes it easier then to get something to the point where we are comfortable in the FDA and the EMA in Europe and others will authorize the use of new drugs in kids. So I think there's huge potential. And I think just being able to aggregate all this data from all these far-flung places and all these various databases will help us in terms of fueling research collaboration. Um, you know, when you think about the fact that there are different cancers that are more common in different populations and in different parts of the world, you've but those parts of the world may not be where the where there are a lot of resources for research. So you need to be able to get that data to different places. We need to be able to collect data in standardized ways. So we know we're comparing apples to apples, but I think there's huge potential to um uh once we do some standardization to be able to better share data and aggregate that data and point researchers down productive paths. Um it researches, as I'm told, it, you know, insidious incrementalism. And so if we can, it may still need to be incremental, but if we could speed the process of the increments and we can it, or we can jump over some, that would be welcome, I think, to everybody.

SPEAKER_00 16:49

Yeah. Uh you mentioned, and I think we'd all agree that, you know, do we invest enough in this area? Probably no. Uh, and you know, as government funding seems not to be what it once was, what do you see as the future for fundraising in in this area? Where's the money going to come from?

SPEAKER_01 17:12

Well, I'm happy to say that in pediatric cancer, um, we've made some good strides recently because we got a couple of bills passed. We also um uh have uh very strong support from Congress, and every administration has been supportive of the Child of Cancer STAR Act and the Child of Cancer Data Initiative, data initiative being so key to AI, as we were just talking about. Um so I think there is an appetite to want to do more in the pediatric cancer space. Research writ large may be a different scenario. Um, but I think the government will still be for a while the main funder of pediatric cancer research because um look, these are very expensive programs. We know that they're uh if you want to look at it in a crass manner for the moment, it's a drain on the bottom line of an institution, but it's always the right thing to do, and it's what the institutions are in business to do, which is to deliver cures and to and to save lives. Um but between what the institutions can raise on their own, what government contributes, which will be the lion's share, um, I think philanthropy has to make up the difference. And we're doing our best to um uh raise awareness and get people to understand they can be part of it. And you don't have to be Bill Gates with billions sitting in a foundation to fund research. We raise money in fives, tens, and twenties. And you know, at events where the vast majority of the people, they're proud to raise a couple hundred dollars and we're thrilled to have it. But if you multiply that out, you think about everybody who's a part of that is now solving cancer and curing cancer. So I think it's going to be um the average man, woman, and child on the street who are coming from all walks of life because they care and they want to see kids have a wonderful future. Um, and I think that's where the you know the gap will be filled. But I will tell you that there are times that the gap feels bigger and bigger. And we are certainly doing our best to try and fund. I will tell you that for this organization and many others in the nonprofit space, um, the pandemic was devastating because, you know, it was two weeks to slow the spread. And I'll tell you, in our the the shutdown happened um the week that we had over 600 events planned. So when you have to shut down events and you're telling people it's two weeks to slow the spread, most people are saying, well, I'll just wait the two weeks and then I'll come back then. Well, there are some who are still waiting the two weeks and it's been, you know, five years and so going on six. And so we're we're sitting here um trying to get people back, but so many people's lives change as a result. They had to move, they went to new states, they, you know, they don't have the apparatus. A lot of the entities that were raising money for us are no longer in business. Um, and so things change dramatically. And I think that um people are unfortunately used to hearing about childhood cancer now, that it's a chronic problem. Whereas if you have a hurricane or a tornado go through a town, people know you need help immediately, that it can't wait. People need shelter and food and clothing and water and all that and medical care. Um and but cancer is something we have unfortunately become accustomed to hearing about, and so it doesn't feel as urgent in general, but then when your child has cancer or any loved one, then all of a sudden it takes on a different meaning, and then all of a sudden you're very aware of what's on the line and how where the gaps are and how much is needed to cure your loved one. So I think um for for good and bad, uh it's great that most people don't know kids with cancer. You you don't want people to know more kids with cancer. But if more people did, then there would be more action. And so, you know, it's really incumbent upon the hospitals that treat kids and charities like the St. Baldrich's Foundation that are trying to get the public to care and prioritize this as a concern. Um, there are a lot of things that we get whipped up about in society today, and I think um, you know, it in in my world, it it's not as life and death as where we are now in child of cancer. And um, that to me, everything else is solvable. And if we sit down and work together, child of cancer is Something that um we can solve it if we have the resources, but it will take some time. And but it definitely takes the will and this intuitiveness to make sure that we see it through.

SPEAKER_00 22:24

Talk a little about how you see St. Baldrich's over the next, I don't know, four, eight, five years. What's the horizon look like? What what are the things you're gonna try to do? What's your strategic direction?

SPEAKER_01 22:37

Well, growth is always, I think, for any entity, right? Whether you're a business enterprise, a charitable enterprise, I think growth is always there because you want to um uh you want to be able to do fulfill your mission and or serve your customer if you're in business. For us, ultimately, we want to go out of business. We don't want to be a going concern forever. We don't want to be needed forever, we want to be able to be irrelevant because we, you know, mission accomplished, we can take a day off. That would be phenomenal. Um and so for us, growth is definitely key to that, but I think um continuing to push the kind of the boundaries and trying to think a little bit differently and out of the box and enable the use of or the development of, I call it new weapons. So when I started working in this field, you know, 26 years ago now, um the researchers were saying we really need another weapon. We have this three-legged stool, chemotherapy, radiation, and surgery, and we really need a new weapon to fight cancer with. And, you know, because we've taken those things almost as far as we can, barring like some new breakthrough drug, like, you know, we we we can't get much further with those. Um, and so here comes immunotherapy, harnessing the power of the body's immune system to fight cancer and a more what so far, a much less toxic way to the body, um, a way that, you know, supercharges your body to fight off the cancer of within. Um, it's brilliant. And it's being very efficacious in drug cancer, uh, blood cancers, um, but it's proving more difficult in solid tumors, and they're working very hard to figure out how to make it work in solid tumors. And we're funding a lot of that work. We are the first to really fund immunotherapy and pediatrics. So we want to look for new things like that. But I don't want to suppose that that's the last new weapon. Um, we want another mega weapon too, and we'd like a bunch of them and anything we can find to um to fight cancer. So I think for St. Baldrix, we're just always going to be asking the question: what else could help? What else do we need? How do we move the landscape forward? How do we overcome major barriers while we are making sure that every individual disease is moving forward? Um, brain tumors as a group are still across the board the most lethal types of childhood cancers. And I think we're really going to be continuing to push in that area to try and get new things happening. There have been some exciting things. Um, you know, the blood-brain barrier is a difficult um hurdle to cross for drugs and so forth. And there have been some really fascinating things done with ultrasound and things that are um creating new pathways and new opportunities for efficacious treatment in kids, and that's exciting. So I think just for us, we're gonna be continuing to look to the research community to say, what crazy ideas do you have? And and uh what what could be the thing that, you know, and maybe other people are afraid to take a chance on that. We want to be the organization that does take a chance because we know that the government funding is really very safe. They fund great research, the NCI funds great research, but it's safe. It's very has a very high likelihood of progress, which is great, but back to what I was saying earlier, we could probably make more progress more quickly if we take some calculated risks or some bigger risks. And I know the the um the phrase high risk, high reward is where we want to be. Um, we want to do the things that we know will matter and will help kids, but gamble some on the things that um if they pay off, will pay off in a big way.

SPEAKER_00 26:48

Well, I you know, I applaud you for that kind of vision. And not everybody is playing the game as boldly as you are. Um, so hey, thanks for spending the time with us. If people want to learn more, talk to you, etc., what should we tell them? Where to go, who to talk to? Yeah.

SPEAKER_01 27:08

So they can visit us on our website, which is uh www.stbaldricks.org, or call us at 888-899 BALD. We'd love to talk with anybody. We welcome everybody. We have volunteers, donors, advocates, kids, families, uh people from all walks of life are welcome here. There's a place for you at St. Baldric's.

SPEAKER_00 27:34

Well, again, thanks for taking the time with us today.

SPEAKER_01 27:37

Thank you, Timothy.