S1, E14: Nonprofit Leadership: How a Lawyer Transformed Childhood Cancer Research

Kristin: [00:00:00] There’s a lot of effort around cancer and solving cancer, but I think what, what I didn’t know, and I think what most people don’t know is what that really means is cancers that affect adults and not children. The cancers that affect children are very different biologically than. I didn’t realize that, and we’re not doing much at all for children, and it just seemed wrong to me.

Georgi: Did you know the average person will work 90,000 hours in their lifetime? What if you could use those hours to find fulfillment and become a disruptor for good? Welcome to the Work That’s Worth It. Podcast. I’m Georgi an Tobin, and I’m here to demonstrate that an ambitious, meaningful, and rewarding career is not just a dream.

It’s achievable. Each episode will dive into conversations with global change makers who crack the code on combining [00:01:00] income and impact. If you’ve ever felt like you were torn between a paycheck and your purpose, or maybe you simply yearn for more purpose, you’re going to be exposed to the ambitious humans who have done it themselves ready to make your work worth it.

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today on the work that’s worth it. Podcast. We are honored to welcome a remarkable leader whose personal journey exemplifies how life’s most challenging moments can redirect us towards truly meaningful work. Kristin Connor began her career as an accomplished attorney building a successful law practice with a promising future ahead.

But in 2001, her life took an unexpected and profound turn when her one month old son was diagnosed with an aggressive form of childhood cancer. After her son was declared cancer free, she made a decision that would transform not only her life, but the lives of countless families facing similar battles [00:02:00] rather than returning to her law practice, she felt called to a deeper purpose to stay in the fight against childhood cancer and bring more resources to finding cures for these devastating diseases.

In 2006, she joined Cure Childhood Cancer as CEO and under her visionary leadership, the organization has experienced extraordinary growth. She has helped it raise more than a hundred million dollars and spearheaded critical efforts to ensure children with cancer have access to cutting edge treatments like precision medicine.

It’s my great pleasure to get to know her and learn from her story. Kristin, lovely to have you on the work that’s worth it, podcast.

Kristin: Oh, thank you for having me. It’s a, it’s really an honor to be here.

Georgi: Yeah. Well, I am so excited to learn from you. I understand you are someone that is driven very strongly by your personal mission, and I was hoping we could start there and you can share what that mission is about.

Kristin: Well, I think personally my [00:03:00] mission and that I do, you know, am able to do through my work is to find better treatments for children with cancer and ultimately cures for them. I feel passionately about that.

Georgi: Yeah. How did you get involved in that?

Kristin: Well, I’m a lawyer by training and education, so I practiced as a business litigator for 10 years when I got out of law school and then didn’t really have plans to leave.

But in 2001, my youngest was diagnosed with cancer and aggressive. Form of childhood cancer called neuroblastoma. And that experience was just life-changing for me, and he survived. So thankfully we had, uh, a great outcome. He’s doing really well. But in our two years of experiencing this and, and going through what we did.

I became very close with a number of families whose kids were, were fighting [00:04:00] cancer, and I really saw firsthand what these children go through. And several of my friends, their kids did not have the same outcome. They did not make it. And I really became. Interested in understanding, you know, what, as a nation we’re doing about childhood cancers, you know, there’s a lot of effort around cancer and solving cancer, but I think what, what I didn’t know, and I think what most people don’t know is what that really means is cancers that affect adults and not children.

The cancers that affect children are very different biologically than those that. I didn’t realize that and we’re not doing much at all for children, and it just seemed wrong to me. It seemed like, you know what? It’s just time for these kids to have better [00:05:00] and they deserve better and we can give them better.

And that just was so compelling and to me that I felt like. I needed to be a part of that.

Georgi: Yeah. It sounds like that was, it’s like a calling that you experienced. That is absolutely

Kristin: what it, what it felt like. Yeah. And

Georgi: I did see on your website to put it in perspective, but I think you said 4% of federal funding goes to childhood cancer.

Kristin: Yes. And today, now it’s five. It’s five, but only because it’s not that they’re giving more money to childhood cancer, it’s because the budget is less now, and so it’s 5%, but it’s such a fraction. It’s pennies. Pennies on the dollar that, that the kids actually. Get from that. And they need their own research that is really focused on the diseases that they have and not breast cancer research does not help children with cancer.

Lung cancer research does not help the kid. So their [00:06:00] cancers need its own research.

Georgi: Yeah. You are the right advocate ’cause you’ve experienced it personally, so you understand the pain points and you also have the motivation to help other families ideally have the outcome that you have.

Kristin: And I, I’ve also seen families that are, they’re either the frontline treatment doesn’t work or the cancer comes back and they are desperately searching for clinical trials.

Anything that will open while there’s time, and I’ve seen that time run out and that is the most. Heartbreaking, awful thing. And so I just feel very passionately about getting some of the treatment options that are stuck on the shelf because there’s no funding to the bedside.

Georgi: Yeah, I think I, I, I listened to one of the parents who’ve been helped by your organization say, there is no time to sleep.

And that just really felt incredibly heavy that a parent has to face that. And you’re, you are running out of time.

Kristin: Yeah, absolutely. It’s, it’s horrible to see and I can’t [00:07:00] imagine, but I can, ’cause I’ve, I’ve seen it so often and, and I just think we can, and we do a lot better for these kids. And we are, which is the, the positive side, the great thing is that we really are doing better for them now.

Georgi: Yeah, so I looked, and it looks like your organization is focused in three areas, which is the research and financial assistance for families, and then meals served at hospitals. Is that right?

Kristin: It’s actually, the way I think of it is we have a dual mission. So research is absolutely our top priority. There are many of us who have personally experienced it, feel like, man, we’d give up everything else for a cure, right?

So that is our highest priority. And second is. The supporting the families through the journey from diagnosis until whatever, like we support bereaved families, we support families with survivors. Unfortunately, now with the treatments that these kids get, they have side effects that can be very devastating later.

So [00:08:00] we. Continue to walk with them, make sure that they understand the risk that their children face from the treatments that were used and so forth. So it’s the research, um, arm and the family sur support arm.

Georgi: Yeah. I mean, Kristin, it sounds like you would have to have so much empathy to be able to do the job you do.

And an example that struck me that I listened to is even just providing blankets in the hospital because you wouldn’t know that it’s cold, but you’ve been through the experience. But that is such a. Deep level of empathy for the journey of these children. Is that something that you, I mean, uh, probably in your law degree was not as relevant, but is something important now?

Kristin: It’s interesting. My, I think my law degree and the, the work that I did as a lawyer did train me for this, but I was an advocate. You know, I did business litigation, so I think that was all training to advocate for these kids. That’s how I. But in terms of the family services, I have [00:09:00] such an amazing team.

They are angels on this earth, I’m telling you. And they all either have had a child that went through cancer or they, we have two survivors who went through it themselves, and we have two people who lost siblings. And so I think the magic is. It is, it’s not just what we do, but it’s how we do it. And like you said, the, the level of empathy and families need, they, they, they need to be surrounded by people that really do understand what they’re going through and.

You know, nobody can understand, like people that have gone through it themselves. So they’re an amazing group of people and they just take care of these families so well.

Georgi: Yeah. I would love to understand more about you spending all this time in a topic that obviously was, I’m sure it was very traumatic for you and continues to be [00:10:00] as you.

Or with the families that are going through it. ’cause I work with a lot of young professionals and we look at areas of where you can make a contribution and some people are able to repurpose pain or something that they experience that’s really hard and other people think, I just can’t do that every day.

I do know about it and I understand the journey, but it’s not something that I can have the strength to sit in every day. How do you do that?

Kristin: Well, I, I understand that, and I think that that’s very normal and it’s a very, I mean, we have families that go through it that, and some families need to channel their grief or their pain in a way, and this is the way, and others, it’s just too much and they need to be as far away from it as possible.

And you know what those. There is no wrong way. Like I understand that for some people this is not the right way to spend their time. For me, all I can say is that it didn’t really feel like a choice. I think when we got through it. [00:11:00] And became, it became for me more about like supporting my, my friends whose kids were going through and then, you know, and then we started losing them and it just, but not just the loss, like it, it’s watching a three-year-old sit in a recliner getting chemo infusion sit perfectly still.

Like I had a 3-year-old at that time. He never sat still, you know, but those kids knew that. This was chemo day and this is what they did at three years old and that just. In and of itself kind of breaks my heart, right? That a 3-year-old understands that and, and I had friends whose kids went through bone marrow transplants, and I think that was such an eyeopener for me.

The level of suffering and bone marrow transplants are very important for so many people, not just children, but lifesaving, but the suffering is unbelievable and. I watched that and I just thought, [00:12:00] this is insane. Like one day I hope we look back and we think this is just the most barbaric thing in the world because it feels like that, especially with a, with a child who doesn’t understand, or a teenager who’s.

So isolated from their friends for so long, and it’s just, I think that I felt like there just, there just has to be a better way and, and we have made advancements with so many cancers and I just. Felt that, like I said, that these kids just deserved that and that I looked to the, what I think of as like the breast cancer, let’s say lobby.

And they’ve done such a great job in unifying and, and, and really like revolutionizing cancer awareness and treatment. And I felt like, you know, it’s just time for the kids. Like they need that. And at the time, you know, when I. Started doing this, I, I really did research and looked for, okay, like who’s doing it?

Like what, who’s the national leader, you know, who are the national leaders in this [00:13:00] area? And it was a misunderstanding on my part. I, I thought that the big cancer organizations were doing it right, like surely. But what I found was, no, not, not really. Like they really are focused on the cancers that affect the most people, and those are going to be adult cancers.

And so. So my brain understands that, but my heart doesn’t. And I feel like there has to be a place for the kids too. And so I think that is what fueled me. And I think over the years, like your question is like, how do you. Deal with it. Right. And I think for me it’s a couple of things. One is that I see the progress that we’re making.

I’m almost at 19 years of doing, of doing the work, and I see how drastically different treatments are now for some kids than they were when I started this. And the advent of personalized, we call it precision medicine, but really personalized medicine that’s. [00:14:00] Really genetic therapy almost, you know, and I see that and I think, oh, it matters, right?

And we are moving the needle and, and there’s not just gonna be a, Hey, one day we cured cancer. That’s not how it works. But we are moving the needle and there are more children surviving now than there were. And surviving in a kinder way, right, with treatment that just isn’t as just devastating for their lives, you know, their quality of life after.

Cancer. And so that just gives me so much optimism and it, I just know that what we’re doing matters and then like helping the families through like, oh, every day I don’t have to look far to know that my team is making an impact. Really positive impact for people every single day. You know, we get notes from families and letters and.

I just know that it really is helping them and [00:15:00] so that is where I get the strength is it does really matter and it, it really is making a positive impact and not as fast as I’d like it to, but it’s definitely happening.

Georgi: Yeah, so I love that because you just described that. You can look at the macro level and think sort of how are we doing as overall, how much money are we raising and what are we able to move the dial on?

And that gets you motivated to see like those metrics change. And then also getting that day to day feedback from a particular family and watching your team get that feedback. So you have this combination loop of getting positive feedback from the work that you’re doing, which probably then fuels you to

Kristin: keep going.

And seeing how the research is impacting the treatment. I think, I think, you know, if people, if your listeners are like, like I was, you know, you think of research and you think, oh, there’s this black hole. What is even is that, and like how can my a hundred dollars impact [00:16:00] research? Well, like now that I’ve had 19 years of seeing it, and these pediatric oncology researchers are so available to us, right.

I can really see how it’s impacting and how your $100 that’s combined with my $100 actually really does help bring about progress. And I, and I think that it’s really exciting. I mean, it really is. And I love the work. I love what we’re doing. It’s not really work to me.

Georgi: Yeah. What skills do you bring to the table that have been particularly helpful for the kind of career that you, you do?

Kristin: Well, I, this is back to, you know, goes back to the law training and I think that that training taught me how certainly. Taught me how to think really critically. And I think that is important. And I think that, like I mentioned about advocacy, I think that I learned how to do that. And you know, I think [00:17:00] my brain is a strategic brain and so I, I think from the beginning, you know, I kind of had a vision like, and so I think I’m able to.

Step back and think big picture sort of strategy, and that has been very helpful. At the same time, I think that I have the, just the heart of a, I mean, I just have a lot of empathy as, as a human being and, and a lot of compassion, and I think that people know that I’m just genuine. I’m, I’m very authentic when it comes to this and this work, and.

And I think those things make people tru trust me as a leader. And I think that that’s obviously, that’s very, very important and, and helpful.

Georgi: Yeah. Did you grow up

Kristin: in a family

Georgi: that

Kristin: was service oriented? I. Um, not professionally, but my mom, you know, she just was always doing [00:18:00] things and for people, and I, I heard recently like a quote that so much of what our kids learn is, is caught rather than taught.

Right. And so I feel like for me, just, I just caught it as I watched her in action every day and just the way she lived her life. And, and I think that that. That compassion for me as a person was, you know, was something that was nurtured very, very early, but not in a way like, oh, you need to understand about people who are less fortunate than you.

It wasn’t like that. She just modeled it.

Georgi: Yeah. Yeah. Wonderful Things about doing important work like you’re doing that has a very strong contribution to the world, is the people you get to surround yourself by. Can you talk about how that has added value into your life and the kinds of people that you get to meet and work with?

Kristin: My favorite part of this, I mean, it may be that is my favorite part. I mean, so I feel like in this [00:19:00] field of nonprofit work that. I get to meet like the best of humanity, the absolute best of humanity. And it’s, it’s like salt of the earth people. I just kind of laugh about it sometimes and I’m like, you know, like jerks don’t really wanna help kids with cancer.

So it’s really, you know, generous giving people who also are compassionate and care. I mean, the people that I work with every day, they’re, they’re smart. I mean, they’re smart. They could be doing anything they want to do out there in the world, and this is what they really want to do. And, and so it’s, I’m working with really smart people who are very devoted to what they’re doing.

Hardworking, and, and I also love meeting, I think I, I wouldn’t have thought about this like when I was younger and that this would be a part of it, but. But I have loved getting to know people in other nonprofits, like other nonprofit leaders and understanding, you know, what [00:20:00] problem they’re really focused on and what they’re doing to solve that problem.

And it, it’s really inspiring. I mean, first I learned, wow, there’s a lot of need in the world. Like there’s a lot of need that is going unmet, right? And that the nonprofit sector is, there are always people that are like. I know that that’s a need and I’m going to do something about it and, and how many people are just devoting their life to helping others, or maybe it’s environment or whatever, but like really doing meaningful, impactful work.

And not to say that you have to be in a nonprofit to do meaningful, I don’t believe that you do have to be in a nonprofit, but I think it’s been really inspiring to me to see. So much good and, and effort in the world to help others. And you know, you don’t get that from watching the news every day, so, you know what I mean?

Like, it’s, it’s just been, I wouldn’t have a, a picture of [00:21:00] this if I wasn’t doing the work and in it every day. So I, I do love that.

Georgi: Yeah. I am particularly interested in helping people find careers that have a impact in the world, but also can pay them enough to live a life that allows them to meet their needs, desires.

And you were talking about the not-for-profit world. How have you been able to make that work for you? Okay,

Kristin: so not. I did take a quite a big pay cut and to do this, but the board, they knew that and they were very sensitive to that. And they gave me a lot of assurances that as the organization grew, that they would help me, right?

Like to make a better, better income. And you know, my income was the primary income and our family and I two little ones, and they’ve been really true to that promise. And I think they really. I honored that along the way and have it every step. [00:22:00] And that has, that has helped. And, and, and I think I’m a big advocate now in the sector that come on.

Like you cannot expect people, it is very hard work. I mean, I was a lawyer and with a large firm that had huge billable hour requirements, so I am a hard worker and I was used to it. But let me tell you, it is harder work in a nonprofit because. You don’t ever have the resources you need, and I don’t care how large you become.

We were three people when I started and we’re 30 now. We’re still small, but like a lot bigger, but, and we’re as under-resourced for what we’re trying to do as we were back then. It’s just the nature of the beast a little bit. So you work really hard and, and you cannot expect people who need to be able to take care of their families and, and earn a living to do this work for free.

It’s re or for pennies. Like it’s not, it’s just not realistic. And there are very few people who [00:23:00] can do that and we’ll do that. And so our organization. Of course we have to be responsible, but you have to pay for good people like you do. And our board has been willing to do that and, and I love that because we get great people, I mean, who feel like they’re being paid well.

And I think we’re very generous with benefits and time off and all of those things that. Don’t really cost, well, benefits, cost, but you know, like time off those things don’t cost. And I think not every nonprofit has a board like ours that believes that and that is willing to stand behind their people.

To donors who think that just ’cause you work for a nonprofit, you shouldn’t make any money. Like, that’s just ridiculous. And so I, I think that it’s absolutely possible to work in this sector or. To do work that really is [00:24:00] meaningful and matters and make a living absolutely, absolutely possible. Yeah, I think that’s,

Georgi: it’s so, I’m so happy that you shared that because I think some people do have the impression that a not-for-profit is gonna be really hard to support a family on.

And so I think what you’ve just highlighted is the right board with the right mentality and funders would be able to attract top talent and you have to look for

Kristin: those opportunities. Yeah, and I, I would tell you that like our funders, we’ve never been asked a question by our funders about, or an objection.

Never ever. And it’s all public. You can go on nine nineties and see what the compensation is. But I think that if you have a nonprofit that’s really mission driven and the board is understands that, like, hey, we’re really devoted to solving this problem that we exist to solve, and we need the best people to do that.

That is a, that’s the right mindset and I think that there are a lot out there and [00:25:00] leaders like me who are saying, who are advocating for that, and that needs to be the norm.

Georgi: One of the chapters I have in my book is, uh, about conflict, and I find a lot of the kindest humans in the world have a really hard time with conflict, and not just conflict for con’s sake, but really what the barriers are and overcoming those barriers.

How have you prepared yourself to move past barriers and have difficult conversations?

Kristin: Is such a great question. First, I’m gonna talk about conflict like within the organization, right? Because you’re all, I mean, you’re all humans and. And it’s funny to me, I mean, I have to laugh because I used to describe our staff as like a family, and I have a coach, an executive coach who’s like, stop calling it a family because then what you do is you create this environment that when you do need to like.

Lay down the law, or you need to have hard [00:26:00] conversations that nobody can have them because it’s like, oh, you know, like that’s not the right way to think about it. And I mean, honestly, I still do kind of think of us as a family, but I think what I’ve also learned is that being honest and truthful is kind right.

And so. You have to be willing to do it. And I think that, I mean, it’s taken me time to be able to develop the stomach to do it, but I also now have made mistakes in avoiding conflict and having hard conversations that have just made things worse. It just makes it worse if you don’t deal with things. If so, now I think it’s, you can have conflict and you can, you can have hard conversations in a kind way, but you need to have them.

So that’s sort of internal and. I don’t know, you know, externally, so there’s, I don’t know if I’m thinking about this kind of the way that you’re meaning the question, but you know, we certainly sometimes have people who are unhappy with us for one reason or another, and [00:27:00] I think that. I don’t shy away from that.

And I, I think it’s, but I think you have to be gracious. I mean, as a nonprofit, like you have to be gracious and you also have to be willing to say, you know, I’m sorry you feel that way, and I understand if you aren’t going to support us, you know, and you have to stand firm in your values and those kinds of things.

So I don’t, I don’t know if that’s what you were, what you were thinking about in terms of external conflict.

Georgi: I mean, I think sometimes it’s internal where you’ve got your own roadblock of feeling sensitive to give negative feedback to somebody. And other times it is external factors that are larger than one person.

But it’s something that you have to overcome. And yeah, I think what you’ve said is just being true to your values and being clear on your mission sort of helps you know. What feedback and criticism to take seriously and the other, you know, what you need to internalize and the others that you need to let go to move on to get closer towards your mission.

Absolutely. Yeah. [00:28:00] The other thing that I have noticed with when I was writing the book of like the people who I interviewed, who I called disruptors for good, and one of the characteristics in common is that they were able to think so big, and it takes the same amount of time for A CEO to have an impact on a hundred people or a thousand people as it does maybe millions of people.

And I was looking at your statistics on your website and maybe you can share about like the large impact that you guys have already had. And also what any advice you have about thinking big on growing an organization such as you have done.

Kristin: Well, I’ll start with the impact that I think we have had. So I think, you know, we’ve, in my time at Cure Childhood Cancer, we’ve raised over a hundred million dollars and.

It’s for me, like my pride isn’t in how much money we raise, like whatever it’s in, how we’ve spent it and how what we’re able to do with the money. [00:29:00] And that’s where I just feel so proud. The research that we, we have a. Very vigorous competitive process for determining what research we’re gonna fund. And you know, we know like our resources are limited.

We can’t do it all, so you know, which piece of the puzzle are we gonna tackle? And we’re very strategic about everything we do. So we have a strategy around our research funding and, and we really look at, okay, what are the hardest to cure childhood cancers? Those that don’t have. Good or any treatment options right now.

And we focus there and we focus on projects and studies that are three or so years away from having a clinical or therapeutic impact. So those very early ideas, somebody they’re needed, and that’s not where we’re gonna live. There’s just way too much that’s so close that needs. Funding to get to kids, and that’s [00:30:00] where we’re gonna live.

And we have a scientific advisory group that is nationwide. They’re the experts in the field that are helping to guide our research funding. So I feel really great about that. The other piece of of it is the. Precision medicine, so I mentioned that earlier. This is where you look at the genetics of a, of a child’s tumor or cancer, and you look at what went wrong, where are these mutations that are driving the cancer?

And you target those mutations specifically. And so that is something that’s being done in adult disease treatment and has been for a long time, but it’s. As many things do trickle to children last. It’s very new in terms of of children with cancer. And we launched the in partnership, the third pediatric cancer precision medicine program in the country back in 2017.

And. I mean that I’m [00:31:00] so proud of that, that we have really been able to get behind this approach to treatment and, and really help kids. And the center that we’re funding is now a really a, an international leader in teaching other cancer centers how to do this. And so that no matter where you’re treated, and I don’t think everybody has access to it right now, I don’t.

But they will, and more and more kids do have access to it without having to travel, you know, and I think that, so I love that we have been able to do that and, and make that available. It’s, it’s totally the future, in my opinion, of treating. Pediatric cancer and other diseases. And so I’m like really proud and excited about that and totally lost what your question was.

Georgi: No, no, no problem. It just sounds like you are so invigorated by the work you do, and I can see that you’ve got so much energy [00:32:00] still ahead of you to put towards it, and it’s been such a pleasure to be able to talk to you and learn more about what you do, and I love all the stories you’ve shared, so thank you so much for being on the show.

Oh.

Kristin: Thank you for having me.

Georgi: Yeah, I look forward to following along and seeing what you guys are able to accomplish and yeah. Thank you so much.

Kristin: Well, thank you. And I love your, your show and I think it’s, it’s so great to encourage, you know, young people to. Find their passion and, and find work that they feel is really impactful.

There’s, there’s such a gift in being able to do that and go home every day and know that, like what you did all day long really does matter. It’s not just putting profit in someone’s pocket. It really, it really makes the world, it really matters. Yeah. So thanks for your work. Yeah.

Georgi: Thank you so much and we’ll be in touch.

Kristin: Great. Thank you.

Georgi: I have to say, I feel lucky to be having these types of conversations. Kristin has been able to turn a very difficult life moment into a career. When her son was diagnosed [00:33:00] with cancer, she didn’t just survive the experience. She used it to identify a critical gap in medical research funding, and then she felt empowered to do something about it.

And she has shaped her career around that ever since. Also, something else I wanna point out. Often people ask my views on not-for-profits, for career paths. Is that a good strategy? Yes. No. I always turn the question around and ask, where can you have the greatest impact without burning out? In Kristin’s case, she has been able to find a wonderful balance through her not-for-profit work.

Her work has deep meaning and purpose, yet she has paid for her contribution. I. Maybe not as much as in her law profession, but enough to keep her there for many, many years. And that’s a wrap for today’s episode of Work That’s Worth It. Remember, every conversation we share is designed to empower you to build a career that’s truly worth your time and and energy.

There are future disruptors out there just like [00:34:00] you, who would appreciate the conversations in this podcast. Please support me by spreading the word and sharing this episode with a friend or two, or visit my [email protected]. That’s spelled G-E-O-R-G-I-E-N-T-H-O-V-E N.com. Until next time, ask yourself, what problems am I solving and are they worth my valuable time?

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