E47: Kristin Conor on Funding Cures and Supporting Families Through Childhood Cancer

Kristin Conor, CEO of Cure Childhood Cancer, joins Timothy Chou to share the personal story of her son Brandon’s neuroblastoma diagnosis and how it led her from law into pediatric cancer advocacy. She discusses Cure’s dual mission of funding better treatments while supporting families in crisis, the challenges of underfunded childhood cancer research, and why advances in precision medicine, AI, and less toxic therapies give her hope for the future.

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

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SPEAKER_00 0:14

Good morning, good afternoon, good evening, everyone. To another edition of the Pediatric Mike Stop Podcast stories. Uh I'm really pleased today to have uh Kristen Connor joined. Uh let me just give you a brief introduction to our Kristen of Craig with Vanderbilt University. Uh went on to get a law degree at the University of Georgia. I think we're supposed to go to Ox now. Uh it spent a decade uh at a large law firm. Her second time was diagnosed with neuroblastoma in October of 2001 as a one-third-month-old that's I wrote. So in 2004, she turns up into the nonprofit sector of uh first third to become a company outreach. In 2006, uh became on board a curve counter of the under her leadership. Uh with the known uh Atlanta magazine as the as one of the women making a mark on a roof. Uh really pleased to have you today, uh Krista.

SPEAKER_01 1:33

Thank you. Glad to be here. Thank you.

SPEAKER_00 1:36

Let's let's start out. I mean, uh, you know, I read about your son, obviously. Can you tell us the rest of the story there?

SPEAKER_01 1:44

Sure. Well, uh, when I was 33 weeks pregnant with my second child, um a uh ul an ultrasound revealed the tumor on his spine. So we actually knew there was something wrong at 33 weeks. Um, and I delivered him um three weeks later, and um finally it took about a month before they were able to confirm the diagnosis that it was in fact neuroblastoma, which is was you know the worst of the possibilities that they kicked around when they saw the tumor. So it was it was um it was a shock, you know. I didn't know that babies could be born with cancer, and um, you know, it's definitely not something you ever expect to happen. Um, so uh I will say that he is 24 now and doing great. So we were among the you know the lucky ones um for sure with with his outcome.

SPEAKER_00 2:47

Just out of curiosity, how how did that happen? Because you you hear that neuroblastoma and you go, boy, I I mean, does anybody survive that? So what what caused him to survive?

SPEAKER_01 3:00

Well, um, you know, we were our situation, our story is is really unusual. And um it to make a long story short, there are basically two distinct types of neuroblastoma, and one is very aggressive, and you're right, that um, you know, metastatic stage four neuroblastoma, which is uh which is this the scenario that most people find when they when they have a child diagnosis very difficult to treat and to cure. Um there's a just a second type of neuroblastoma that um that typically you see only in infants, and um it's biologically different, and sometimes it can actually regress on its own without treatment. And with um Brandon's case, uh it was very difficult for them to tell what type he had. They obviously we found it not because he was symptomatic, but on an ultrasound. And so the only way to really know um which type it was would have been to get the tumor um out surgically and then you know uh look at it under a microscope. But because his was a spinal tumor and it had um little like arms that went down into the spinal canal, it was very, very risky to try to get the tumor. So um we didn't know which type he had. And what we were told was that um if it was the more favorable kind, that it would show a pattern of regression over time and slowly sort of um shrink and and and and we that's how we would know. And and they recommended that we just watch him um before you know intervening with either a surgery that could have left him, you know, paralyzed or uh aggressive, you know, chemotherapy, etc. So um Brandon uh had images MRIs done um every six weeks for the first you know uh probably year of his life, and then um every three months. And by the age of two, there was no pattern of shrinkage with his tumor. And so the the fear was that it would act kind of activate, you know, and they don't know why the switch flips and these things become so malignant acting. But um, but at um at two, when there they said, you know, if if we don't see or see a clear pattern by two, then it's not that kind. And and so we we were there and actually had found a surgeon in uh San Francisco that felt like he could um try a new technique to get to the tumor without causing such um just lifelong issues. And uh we were there and it was the day before surgery, and they uh he did a final kind of scan and um and called us back and said, I don't know how to tell you this, but this tumor has just disappeared, and um it we had had a really serious scare about a month before that, where um the thought was that Brandon was showing symptoms that were consistent with neuroblastoma with sort of an activated um, you know, and he'd had emergency scans and um the tumor was there, was still there. And so they the doctors felt like it's just time, we need to get this out, you know. Um we've kind of waited long enough and we don't think it's this favorable kind. So before it becomes super malignant acting, we need to get it. And that's why we were out there, and so for it to just disappear kind of overnight was a shock to everyone and not something that that happens um typically at all. So um we were, you know, at first I thought, oh, they've they've made a mistake, like there's no way this has been documented so many times, but literally it it really did sort of disappear overnight and the space filled with fatty tissue, and so they never had to do surgery or he never had a drop of chemo. Um, and so we were in every way, in every way among the absolute luckiest.

SPEAKER_00 7:27

Wow, wow, amazing story. It must be the air in San Francisco or something, right?

SPEAKER_01 7:34

It must be. It must be. To us, it was to us it was it was a miracle. You know, we really felt that way, and just um, you know, we're all these years later, and and no one's been able to ever offer any kind of uh scientific explanation for what happened. It just even with the kind that regresses, it doesn't regress like that. So uh it's very lucky.

SPEAKER_00 7:56

Wow. Well, uh, thank goodness. Uh this obviously inspired your move. Uh let's talk about uh cure childhood cancer. I I've read you have two core missions. Could you talk a little bit about that?

SPEAKER_01 8:11

Yes. Well, I would say that our our most urgent priority is finding better treatments and cures for children who have cancer. That's at the heart of absolutely everything we do. I think for me, you know, what happened and what caused me to make the change from my career as I was a business litigator. And um, you know, I had so many friends whose kids were I met so many friends in the hallways, you know, of the hospital, and and you know, we had this incredible result, and most kids don't. And I was witnessing that, you know, with what their children were going through, and um and you know, it felt like we we just have to do better for these these kids. And and really it was after, you know, we were on the other side that I started researching what's the state of pediatric cancer in our country. What are we doing about it? You know, I learned all the stats, you know, that it's the leading cause of death due to to disease in children, second leading cause of death overall in children, incident rates rising, that to me, and then when you're in it, when you're in the trenches and you see what these kids experience and what they go through, it just seems like we should be focused on this as something that really is so threatening to our kids. And I was absolutely shocked to learn that we are doing so little as a nation about pediatric cancer. Yes, we are, we are, you know, spending uh hundreds of millions of dollars on cancer research, but it's it's it's looking at uh cancers that affect adults, not children. And they are, I think, you know, you might think, oh, well, you know, cancer is cancer. It absolutely is not. Just like breast cancer isn't the same as prostate cancer or lung cancer. The cancers that affect children are completely different biologically from those that affect adults. And so the research that we're doing on adult cancers, while very important, doesn't necessarily help children. And so I just couldn't believe that we um, you know, we're spending you know, less than 4% of federal funding and cancer research is looking at cancers which affect children. And it just, you know, I I understand it. I understand why. It's um, you know, my objective side can like understand that, you know, the way that we look at it is we look at the number of cancer patients and we see that a smaller, you know, a small number of them are children, so the dollars, you know, follow the numbers, but I I think that that's the wrong way to look at it. You know, I think we have to look at what it, what are the things that affect our children that are that are, you know, that are threatening to them, that are dangerous, that are, um, and and cancer is really at the top of the list, so we ought to be treating it as the crisis that I think it is. So that really inspired me to make this move. I just felt so compelled to do something, you know, something to try to get more money into the system, you know, into the researchers doing the work. So um, so I joined Cure, and that really speaks to what our what our primary mission is. I think, I think as a parent, um, you know, all that I wanted to know was that my child was going to survive. And I think that here at Cure, that's how we all feel that improving the treatments for these kids is so important. And so our secondary mission is to help families that are going through this very difficult experience today. And so we do that in a number of ways, from you know, financial assistance, because a lot of time families, you know, lose income, they can't work, they have to take care of their kids. Um, and we're trying to keep them stable in housing with their utilities on, in cars so they can get to the hospital, those things. And uh, you know, we provide counseling for the whole family, um, bereavement support, you know, so so many services for families. But but at the end of the day, you any parent would give up any and all of those services uh in exchange for the guarantee of a cure. So that's most important to all of us.

SPEAKER_00 12:33

Yeah. Yeah. You talk about the, we'll call it the the minimal amount of federal funding there is for cancer research. I sometimes think, you know, people ought to think about when you cure a kid who's, you know, what, a year old. You've got 79 years of productive life in them versus an old guy and you know, you got a couple years left. We don't seem to make that triangulation.

SPEAKER_01 12:58

But we absolutely don't. We don't look at those life, you know, the life years saved, right, with a child. And we and we need to, and and both in terms of curing them, but also in the way that we're curing them. Because you know, when you're 70 and diagnosed with cancer, you really don't need to worry about what happens 20 years down the road after chemo and radiation. But when you're one or two, you absolutely need to worry about that. Yeah. That's a really important thing that I think a lot of people don't realize. It's the goal is cure, but not but not cure at all costs, you know, cure with preserving the body um to be a healthy adult.

SPEAKER_00 13:40

So yeah. Um, so talk a little, I think you've been somewhat successful in figuring out how corporates can play a role in all this. Uh, could you talk a little bit about that?

SPEAKER_01 13:53

Um, corporations is yeah, okay. Well, yes and yes and no. So um I will say we do have some incredibly, you know, generous, strong corporate partners who um, you know, have engaged their employee base in this mission. And I think that um these are the these are corporate leaders who are doing it for all the right reasons, right? Like they they actually care really a lot about the cause and about um and about helping and and really also see the benefit of uniting their employee base around something bigger, right, than profit. And it's really been amazing to watch, um just um really transformational in corporate cultures. And I think that at the end of the day, the companies benefit um tremendously from being so involved in a genuine way. I think that's really important, you know, with with um the organization and our mission. Um so so yes, we have um had some, we've just had some incredible and do have some incredible corporate partners. The flip side of that is that I think it's a myth that companies give just um such a significant amount of money to uh to charity. I think that it um a lot of times, well, when you look at uh charitable giving over time, you'll see that it's a really small piece of the pie, you know, that um that 80% or more of charitable giving is from individuals. And it's such a small, small percentage. I think maybe 10% or less of charitable giving comes from corporations. And a lot of time it's not. Um it might be um um marketing, you know, marketing um uh expenses, and and so they're looking for marketing value, or it's in kind, um, even, which thankfully, I mean, we you know, in kind um donations from corporations are so important. So it's but but but there isn't a lot, I don't think there's as much um money as um people think. And a lot of our corporate partners, like maybe their employees are giving, you know, um, and the the company itself isn't isn't always giving, you know, a lot. So um so I don't I don't know that we completely you know a crack to the nut, but I mean we're so thankful for our corporate partners. But but but but really most of charitable giving comes from just people like you, you know, you and me.

SPEAKER_00 16:46

Talk a little about, I mean, you've had a lot of experience in this. Uh what do you see happening as the future unfolds? What how does giving change how? Yeah.

SPEAKER_01 16:57

I think I think it does. And I think I think right now is a really tough time, and I think it's really hard. You know, we just completed a strategic plan, and I think businesses are are dealing with this too. It's very difficult to project out even three years right now. There's just so much uh uncertainty in the in the world and and just so much going on, and it makes it so hard. And I think we're we're certainly seeing that too. And I think one of the challenges that nonprofits are facing right now is that federal funding for nonprofits has been cut so drastically, right? And so you have uh just um so many nonprofits that were um that were federally funded, you know, maybe they were working on, you know, foster care, they were working in underserved populations, um, you know, um, and their their funding's just been completely cut. It was just cut with no warning, just all of a sudden. And those organizations are having to look to the private sector for charitable dollars where they never have before. And I think that's changed the landscape for all of us, and it's made it harder for everyone to do this. I mean, it's some of the most important critical work that we're doing as a society, right? Falls on the nonprofit sector, but now we're doing it with so much less support than we had. And so, and everyone is competing for the same dollar. So it's a really tough situation. And I think that um if funding was, if it was a more stable environment, I would tell you that I'd like never, I've never been more excited and hopeful for where we're going in terms of medical, you know, progress, right? I think science is at such an exciting point in time with um, you know, the completion of the human genome project back in the early 2000s, and then the technology that has um advanced so much. And we now were able to, you know, map a child's tumor and see, you know, what's happening um at the genetic level driving cancer, and then really work to develop these targeted therapies that can like maybe turn that off, right? The cancer-growing gene or mutation. And that is just so mind-blowing. I mean, when my son was diagnosed, that wasn't even on the horizon, and now that's becoming more and more standard of care, you know, and I think that we need that research to continue. And and then, you know, you have the you know, AI, you know, now that's that's really, you know, exploding too, and and immunotherapies, and just it's just never been, I think, a more exciting time for scientific progress. And then we have funding cut. And so, you know, what what happens now? And so I think, you know, I it's hard to predict, you know, where we're going and what the next, you know, five or ten years looks like if if the funding situation wasn't what it was, if we were back a couple years, and I would, I, I would just tell you, I'm just so optimistic that we're gonna make that progress is going to really accelerate, right? And we're gonna see drastic changes within the next decade and how we're treating childhood cancer and other diseases. I I don't I feel less confident right now, given you know what's going on.

SPEAKER_00 20:36

Mm-hmm. Mm-hmm. You you touched a little bit on it, I have to ask you. What how do you see the role of, I mean, AI is in the water right now, everybody's talking about it. What what role does it play in this picture?

SPEAKER_01 20:49

Yeah, I mean, I, you know, I I'm definitely not a an an expert in in that, and I um, but I certainly have have heard a lot about it and how it, you know, um not just you know really might be used, but is already being used um to um, you know, make research much faster and also in the in diagnostics, and I I think that is is super exciting too. So um I I actually I love talking to people that are really in that field, that that really know where it's going um in ways that my mind probably can't even imagine. But my my hope is that it will again just really accelerate the progress.

SPEAKER_00 21:37

Yeah, yeah. Um you couldn't be in your job without being an optimist. So uh I'm gonna ask you, it's uh an optimist point of view. It's 10 years from now. What where do you think we are? Not about fundraising or what what what do you think we are with respect to pediatric cancer?

SPEAKER_01 21:58

I mean, I just think that. I think that we are doing personalized treatment. I think we are, I think we're gonna transform from a place of giving treatment and hoping that it works to giving treatment knowing that it will work. And I think that, you know, we started with um precision medicine and pediatric cancer, you know, maybe 10 years ago. It's so in its infancy in terms of pediatrics, you know, everything kind of rolls down to the kids last, um, which is frustrating, although I do understand why, you know, that happens. And I think that um, you know, my hope when CURE has played uh a really big part in um advancing pediatric cancer in, I mean, excuse me, advancing precision medicine, which is that genetic-based, you know, treatment approach to treatment, like um, as I mentioned. And that that's been a focus of ours since 2017. And at the time, there were only two places in the country that were offering precision medicine, and that was at Memorial Sloan Kettering in New York and at Texas Children's, and we opened the or launched the third pediatric precision medicine program in the country. And I think back then it was a it was a hope, right, that we would get to the point where you could actually test treatments against a child's tumor outside of the body. And I think that now we're finally doing that, and I think AI is also going, from what I hear from the experts, gonna really play a big role there too. And so I I think that is gonna be a big shift, and I think that we're gonna be treating kids in 10 years in much smarter ways, and you know what I've seen now, I just hit my 20-year mark here at Cure. Um, and it's it's been, you said, you know, that I have to be an optimist, and I'll tell you that if I had not seen progress, if I I've seen such tremendous progress from the time I started to now, I don't know that I could do this, really, honestly, because it is it is hard. You know, you're seeing people um in the hardest things that hardest situations that you know you can almost imagine, you know, with a with a child that's um got a life-threatening, you know, illness. And and and I have seen so much progress, and I think that, you know, but having been in this 20 years now, I am seeing and I've seen, you know, kids that were treated as toddlers that now are developing secondary cancers um from the treatment or having um really serious health challenges because of the treatments they received. And I think that that's gonna be a thing of the past. I really do. I think we're going 10 years from now, I think we're gonna be treating kids in a way that makes them much less susceptible to the secondary cancers and the the really, really harmful, the toxicity of treatment will be much less.

SPEAKER_00 25:04

Yeah, yeah. Hey, amen to that. Um Kristen, just really appreciate you taking the time. Um, appreciate your 20 plus years of dedication to this. Uh thank you for joining us today.

SPEAKER_01 25:19

Oh, thanks for having me for.