[COLD OPEN, clips from later in the episode]

Connor: And I was like, well, we're a nonprofit now. What do we do?

Drezden: Now we're trying to build a bridge while we're running across it. It's like,

Connor: We want to try to make as big of an impact as quickly as possible. We know what we want to do. We know who we want to work with. Like, let's do it.

[INTRO]

Drezden: Before we get started, here's my normal quick disclaimer. Nothing said here constitutes medical advice. These are our own opinions, stories, and experiences. Don't sue me. Listener discretion is always advised. With that fun out of the way, Connor, give me a high-level overview of the foundation and what you guys have done so far. You guys hit the ground running, but I really want to hammer on the impressive shit you guys have already done. For lack of a better term. Here's all the things I want you to say.

---

[CONVERSATION]

Connor: Definitely, I'll dive right in then. So Stronger Hearts Foundation was founded by Kali and I when Dawson was inpatient for his Glenn procedure at CHOP. And we set out to do a few things, mainly provide emergency housing assistance, up to 48 to 72 hours for families who are inpatient in cardiac ICUs. Also provide care packages, other types of kits to help newborns such as our Scent Heart kits, and other ad hoc support such as holiday meals, buying coffee for families, amongst everything else we want to do. That's what we originally set out to accomplish. You mentioned we hit the ground running? Definitely. So we submitted our paperwork to the IRS for Stronger Hearts Foundation, I would say May of this year, 2025. And when you ask people how long it took for them to receive their 501(c)(3), that's basically the IRS acknowledging that you are a legitimate tax-exempt nonprofit, people say months. Long, long, long time. It's going to take you forever. Okay, you know, that's fine. We're not in a rush. Submitted the paperwork. Slowly started to design the logo, design some social media stuff. We actually started on social media just as a business, not selling anything, really just making people aware of what's to come, building that suspense. And all of a sudden in August, a couple months later, we received the letter from the IRS. And I was like, well, we're a nonprofit now. What do we do?

Drezden: Now we're trying to build a bridge while we're running across it.

Connor: We want to try to make as big of an impact as quickly as possible. We know what we want to do. We know who we want to work with. Like, let's do it. We started off with an apparel fundraiser. You know, I think, we'll raise a couple hundred bucks. We can maybe fund parts of our care packages. Awesome. We raised almost $3,000 doing that.

Drezden: Okay.

Connor: Great. We have another event, a more private event but an event nonetheless, for the foundation in October. And it was at a local brewery, got people together, just accepting donations, raising awareness, things like that. And we raised over $12,000. I'm like, we hit our, you know, just full transparency to the audience here, I came up with some arbitrary number. We want to raise $20,000 by the end of the year. That will allow us to start care packages, emergency housing, all that kind of stuff. We hit that by, I think it was October 12th. And here we are and it's still not even the end of the year. So now we're able to do all of this stuff.

Drezden: Counting the months on my fingers over here in case people can't see while they're listening, but that's a very quick turnaround.

Connor: Yeah, very fast. And we did not intend on being able to provide support until early 2026. So, you know, now that we had this funding, we can get started. We delivered our first round of 30 care packages with thousands of dollars worth of gift cards to the Children's Hospital of Philadelphia a couple of weeks back. We delivered 50 Scent Heart kits. And what the Scent Heart kits are is to aid in the bonding between newborns and parents who are immediately separated at birth in the cardiac ICU, because that is almost always the case for the babies who need those surgeries just days after birth. So we delivered those. We delivered, I think it was 50 or 60 coffee gift cards to the hospital for Thanksgiving. We're working on standing up our emergency housing program, that's more of just an admin type of thing, just building those relationships with the hotels, local hotels, so just waiting on that. But now we've actually expanded to Johns Hopkins, which isn't something we were planning on doing for years. We're actually meeting with them in December of this year to kind of go over what that support looks like. Because I think it would be a little different than CHOP, just based on different needs that families have. But all of this to say, we had to, we're still learning as we're going, and what's difficult,

Drezden: Building the plane while we're flying.

Connor: And that's one of my favorites. Yeah. Yeah. And it's hard. And, you know, we work, we're in similar fields. We work 40, 50, 60 hour weeks sometimes. And there are weeks that I find myself working 20, 30, 40 hours a week on the foundation.

Drezden: There aren't that many hours in a week left over at that point.

Connor: And it is that. But that's what it takes, I think. Not to say that that's what's necessary, but to try to get up and go as fast as we are, that's what it takes. It's hard, but I love doing it. So I think it's worth it.

Drezden: Yeah, and I'm really glad that you broached this subject because I'm thinking from my perspective, you know, I've got my job, I'm a finance bro. It eats me up. It eats up the hours. And I've got this podcast and I've got the six, seven charity boards I'm on, you know, because I dragged you onto one of them. I don't have a new baby with a heart defect. I manage my own care, but at this point it's second nature to me. When you set out to do this, keeping in mind that you and your wife both work a lot, did you have a friend or a family member just sit you down and smack you around a bit, say, "What are you doing?" I'm glad it's worked out now, but at what point did more work sound like a good idea to you guys?

Connor: Yeah, it's funny to say that because, you know, I know. From family and friends, you know, they call us crazy. That's a little bit true and that's okay. They all recognize that this is something that Kali and I are extremely passionate about. And it is mutually beneficial to us and to the world, the work that we're doing, because we're forming all these connections in the CHD space. And we're meeting people that are helping us become better parents and be able to provide to Dawson better than originally able to. Really from a knowledge standpoint, we're learning all of this stuff. We're learning new ways to help him developmentally. I think the funniest one was one of the clinical coordinators at Hopkins. I've met a lot of CEOs, presidents, whoever it is from other foundations. Like you mentioned, I'm on a board to another CHD organization with you. I actually just landed on the board for one of the committees on CNOC.

Drezden: Two things I want to say there. One's going to be fun and happy and one's not going to be. What Cardiac Neurodevelopmental Outcomes Collaborative committee did you land on?

Connor: The CN3.

Drezden: You'll have to enumerate.

Connor: It's on my shirt somewhere. It's the CNOC, Newborn Neuroprotective Network.

Drezden: Yeah, that's a lot of words.

Connor: Yeah, I can never remember the name, but I can always remember what they do. And when we were at the conference this past September in Colorado, they were the ones that really intrigued me the most. I didn't set out specifically to join this committee, but I voiced that I wanted to get involved. And it just so happened that I met a few folks on that committee while we were there in September. And I love what they do. I love the idea of helping protect the neurodevelopment of newborns through all of these things that they do. Because I've seen it firsthand, some of the effects that having CHD can have on Dawson from a neurological development standpoint. And also, these are things that we as a foundation can help with very easily. And I say that from a financial standpoint, such as the Scent Heart kits that we're doing. I don't know if you remember them talking about those during the conference, but that's what sparked that idea. And I was like, they're just little cloth hearts that have such a significant impact on these newborns. And I actually reached out to a few Etsy sellers and I'm working with a company called Luxi Charm. She is a former NICU nurse and she's making our Scent Hearts. She provides us a great deal on them and we're able to blast those out to so many different places. So I think that CN3 is a great organization to be a part of, to try to learn more about what they're doing, help out with what they're doing, but also, what can we as a foundation do in addition to Scent Hearts to help with these neuroprotective things?

Drezden: I'm very happy you're involved there, and just as some background to listeners, the Cardiac Neurodevelopmental Outcomes Collaborative is a professional organization of people researching the brain health of CHD patients and what can be done to really improve outcomes. I'm on their communications committee. I'm a producer for their podcast, CNOC Talk, which you all need to go listen to right now. And Connor, I'm going to pick your brain afterwards because we're trying to figure out ways to use this podcast to help theirs and vice versa. But I want to take a step back now. You're very involved in the CHD space. And for me, it came from, you know, my family, I've mentioned this on a few other episodes, but my family was always told that I was special. That I was one in a million. I didn't know what a CHD was until I was in my 20s. I didn't know that it was one in 100. And I found out in a roundabout way from meeting some guy on Instagram, some guy in Scotland that has his own podcast, Heart to Hearts. You guys should listen to that too. And he's the one that introduced me to ACHA. But all these resources were available to me and my family growing up and no one ever told us. Three heart surgeries, God knows how many echoes and stress tests and EKGs later, and it was just not brought up. So I always laugh and say a lot of what I do comes out of spite, where we weren't given the resources. So they're out there, and any patient or family member today that is going without them, you know, that's not me for not trying to help get this information out, which is why I really want to amplify the work that you're doing. But it sounds to me like you guys jumped right into advocacy while picking up all these resources for yourself. And a part of me wonders if it's because of the fact that you've really done everything that is in your power to do for Dawson. And it's, I mean, you guys had everything prepared and still got hit with the things you can't plan for. Is this really just a way of one, preventing other parents from going through what you went through, and two, taking back some kind of control?

Connor: Yeah, I would agree with both of those. I think, there have been many things in my life and in Kali's life, but to talk about mine, where I've said "I'm passionate about this." I don't think I realized what truly being passionate about something was until we started the foundation, started to meet other CHD foundations, meeting folks at CNOC and joining this community. That's when I was like, I feel so strongly about this. I want to help other families because I know what it felt like. And I also want the best outcomes for these kids because I know how it feels to see your child with CHD on the emergency room table, not knowing if they're gonna make it off the table. I know what it's like to see them with their chest laid open in an ICU for a few days with a sterile dressing over it, watching, physically watching their heartbeat. I know the trauma that that can give to parents and I want to be able to help them as much as possible. So we went to the Philly Spin-In, which is CHOP's annual Cardiac Center philanthropy event that they have. And it is an indoor cycling event that brings thousands of people. We had a team last year, we rode for Dawson, this was before the foundation. And there was a parent that spoke last year that said, and you'll see this quote on our website if you go on there, it's right on the front page, "You never asked to be a part of the CHD community, but once you're in it, you're family." And I was crying on a bike listening to whatever upbeat music they had. She said that and that struck straight through my heart. And I think that is what really sparked it even before the foundation. Hearing other parents talk that way, realizing that this wasn't just some illness or some diagnosis, but this was a community of people that we joined knowingly or unknowingly. We're part of it now. I've also listened to a lot of parents speak in an advocacy role. And I feel like, you know, just naturally through work, through the military, being naturally articulate, I feel like it's my duty to advocate for families who either can't, aren't comfortable with it, or aren't aware of even doing so. I'm aware that there are a lot of families that receive a CHD diagnosis, they go to the hospital, when they get out of the hospital, they want as little to do with CHD as possible. And I get that. Like, it's a lot. People have asked me in the past too, is this foundation a coping mechanism? Is the advocacy a coping mechanism? And my immediate answer was like, no. But thinking about it, it definitely is, because this is an outlet for me to tell the story. Every time I tell the story, it's never easy, but it is a little easier than the time prior. And it allows me to hear from other people. It allows me to realize I'm not alone. And I think that's part of all of this too, I want other parents to know that they're not alone.

Drezden: No, I'm happy you say a lot of that because I see a lot of that, it's like looking in the mirror just from a totally different angle. Because, you know, telling my story and admitting my handicap used to make my skin crawl. I'll be honest here. I went through most of my life lying, hiding, and "fuck you if you want to know more and think differently." And that was not a healthy way to think about it. And it's because I didn't have someone up there telling their story that I could go listen to. And that's really what made me mature and switch my focus and the way I thought about it, to tell the story and use it to help others. Which is similar, though not congruent, with what you're doing. And, you know, I give you a lot of shit for being a consultant because you guys are expensive and always seem to find problems. But I also think that, I mean, you're going through this, your experience, and you're identifying, probably, you turn into a, I don't want to overreach here, but it kind of sounds like your background really helped out. Because as you're going through what is probably the most dramatic thing you're ever going to go through in your life, you're still looking at it as a process and identifying the spots where improvements can be made. And then you go start a foundation and make those improvements. You make it so that the parents can get a break. You make it so the parents can get these care packages and have a place to stay. How much did that background, that I probably shouldn't give you shit for, play into what you're doing now? Because from my outside perspective, it sounds like it gave you the lens to fix things.

Connor: Yeah, I think that my background has given me skills that I can apply to something that I'm the most passionate about, which is our foundation in the CHD space. Whether it be time management and stress management from both work and military experience,

Drezden: Is being in the military stressful? That was a joke. Don't look at me like that. Sorry. Continue.

Connor: Yeah, I mean, I don't want to overshoot here. There are a lot of folks in the Army National Guard that have been through a lot more stressful things than me, but I have been through my fair share as well. That taught me a lot about myself and to be able to recognize and adapt to these stressful situations, i.e., working 10 hours in a day and realizing I need to do a few more hours of work for the foundation and Dawson's teething and Kali's tired and it's just, you know, chaos. You need to be able to control that in your mind at least. And then from consulting, bringing a level of professionalism. I think that comes from military too, but a level of professionalism, because a nonprofit is a business. And you're going to be talking to a lot of people, companies that want to donate serious amounts of money. Little things like being able to create things for social media, creating a website, I built our website, to document management, to filling out all this paperwork to be compliant, accounting. Kind of a one-man show right now. Kali helps out with a lot of our event planning and external outreach type stuff, but all our internal stuff is just me right now. I definitely think the skill set that my background has allowed me to develop is extremely helpful. I don't think this would be possible,

Drezden: And how many hours a week do you spend in Microsoft Excel now?

Connor: How many hours in a week are there?

Drezden: I do want to give a quick disclaimer on that though. You know, I've talked a lot about how much time I spend on this and how stressful it can be.

Connor: I don't want that to turn people away from starting their own foundation, joining another organization, a committee, or anything that serves their passion or purpose in life. Because I ask a lot of myself, a little bit more than I probably should. But this is very possible with only a few hours a week. I think that if you're passionate about something, whether it's in the CHD space or you're passionate about something else, you should go after that. Whether you're only able to provide a couple hours a week or you can make it your full-time job, I don't want to turn people away from that because I'm making it seem difficult. It's not. I'm just a little hard on myself.

Drezden: It's what you choose to put into it. And the way I like to say it, because you're a great man for bringing that up, because I always forget to caveat it with, comparison is not a good thing unless you're comparing it to where it'd be if you'd done nothing. So if you're somebody who can only do a few hours a week helping out whatever charity of choice or doing your own side venture, you can't compare it to somebody like, I can't compare it to my friend's podcast that has more listeners. I can't compare it to fundraisers who have more time and raise more money. What I compare it to is if I had done nothing. And that's where you got to start from.

Connor: Yeah, I have a lot of mentors in the nonprofit, the CHD nonprofit space who are leaders of multi-million dollar organizations. And that's not where you have to be. You can contribute a couple hundred bucks a year and you're still helping somebody and that's still making a difference and it's still doing a good thing and it's helping you do something you're passionate about. We, Stronger Hearts Foundation, we want to be one of those big organizations. But we're really just, and it's hard for us to not compare ourselves to those who are already there. It's like we strive for so much and we look at those who have it.

Drezden: Comparison is the thief of joy. You can kind of tailor that to this situation. We have to be proud of what we've done. You have to be proud of what you can do, whether it's a few hundred dollars or a few hundred thousand dollars.

Connor: Yes, it's all about magnitude.

Drezden: And you mentioned you want to be one of the bigger organizations. Let's talk about that for a second. If I'm listening to this now, what's your website? What can I get from it? What can I know? How do I get to it? What can I get from it? How do I donate to it? Basically give me an unapologetic sales pitch.

Connor: Of course. So from both our website to all of our social media, we're on Facebook and Instagram at Stronger Hearts Foundation, without "the," because a lot of people get a little confused by that. But you can find us at StrongerHeartsFoundation.com, Instagram at Stronger Hearts Foundation, Facebook Stronger Hearts Foundation. On our website, you'll learn a little bit about us. You can read Dawson's story. Right now it's current up to his G-tube surgery which he had in September. You can share CHD stories. So you or a family member have gone through this fight, we want to hear from you because those stories are important for other families to read, much like how I'm telling it on this podcast now. We have events listed on there, which we're going to get our events for 2026 up there soon, just finalizing some things. We have a fundraising page and toolkit. So there's a link to a Dropbox that has all kinds of information from a fundraising worksheet to, like, how do I create my own fundraiser to help Stronger Hearts Foundation? Some of the dos and don'ts. So you have those guidelines. We have logos, we have one-pagers, all that kind of stuff that could be useful for a fundraiser. And then finally, we have our donation button, which you will see all over the website. Big red at the top on almost every page. And that will take you to the main donation page for our organization on the website where you can choose to donate to us. Oh sorry, we also have a shop that's new as of like last week. So I always forget about that one. So we do have a shop as well. We have all kinds of apparel on there, T-shirts, hoodies, windbreakers, tumblers, all that stuff. And I think from that, it isn't as much of a financial thing for us as,

Drezden: Advocacy and awareness. Just getting your name out there and sparking conversation about what you do is very important. It's one of the most important things,

Connor: All right, I've got to say it.

Drezden: Very well said. And for those listening who can't see the screen, he is a consultant wearing a Patagonia vest with his logo sewn into it. So that is on brand.

Connor: I love you, man, but I have to, I wore the vest because I knew I was talking to you today. I had a hoodie on originally. I was like, no, I'm throwing the Patagucci on.

Drezden: Speaking, I dug out my CNOC hoodie, Cardiac Neurodevelopmental Outcomes Collaborative, listen to their podcast, and then I realized I wore it on the last one. So I tried to market for them. Something you said, I've always struggled with this, I haven't made a dime off this podcast. I never will. I've built out my website to now you can listen to episodes and I am shocked by how many people go and listen to the episodes on the website, even though it's on every platform. And so I made it so you can go comment on the episodes and make an account there and no one's done it. Because there's a disconnect between what I want to give out for free and how I want to market myself. And I've always struggled with that. But it sounds like you guys have just found that stride. And I think that speaks not to some hidden marketing knowledge or some professional approach. I think that speaks to the authenticity of your organization. How everything that's donated, you guys can turn quick into a tangible value-add for other patients. And there is something to be said for that because it's not, you know, I devote a lot of my time to these heart charities and I pick them not because of some grandiose mission or ideal. I pick them because I can see, you can see where they spend their money, how quick they turn it into a tangible value-add. I throw a swear-word ton of time at the Adult Congenital Heart Association because of how they can take a dollar and turn it into so much that helps so many patients. And I think you guys are doing that. But I want you to say it in a fancy smart person way like you keep doing because I'm not bragging hard enough for you.

Connor: I appreciate the words and you took the word right out of my mouth, authenticity. You can be so much more successful in something when it is authentically you. When it is like, we don't have to pretend. We've been through the struggles of the people that we're helping. We understand what they're going through at the deepest level. And we're able to articulate that to the rest of the world, why it's important, to show real-life examples of what people are going through. And we also try to be as transparent as possible. We're posting everything. We post everything we do, every piece of support that we get. Because I think it's important for people when they donate their money, they want to see where their money is going. I think there are a lot of places that do really good work, but you don't really see the outcomes. Something we're trying to, so we're trying to get into the research space as in like a couple of years from now. And the reason I bring this up is because a lot of organizations do get into that space. They donate a lot of money for research and then the folks that donated, they don't directly see that until an outcome paper is published years down the road. Which I think that's very important to donate to research. It's something we want to do. But as we are building the foundation of that kind of branch of our organization, I'm trying to think through, how can we show our donors what is going on with the research that we're funding, be able to provide them more consistent updates? Things like that, which I think are important because I love companies that are transparent, whether they're a nonprofit or a for-profit. I buy from companies that are transparent for all types of different things. So transparency is something we also try to achieve.

Drezden: Yeah, a big reason I got so involved in CNOC is because I would go to their events. I went to their event and it was the most impactful research for our people with our condition that you could possibly imagine. And they are doctors and PhDs and geniuses that have never had to think about how to sell this. They need a salesman. Kind of like I keep trying to do with you where I take what you're saying and summarize it in a way that is much more dramatic and impactful, because it's fun for me and a lot of people can't pat themselves on the back like that. I struggle with it, that's why I do it for other people. But there is, I love that you're bringing up the research aspect because I don't think you need to wait a couple years and go raise money and then donate to research. I think you need to partner with people that are already doing it and make a way for these researchers to give little mini updates along the way and have some business nerd like you or me turn it into something that gets people excited and happy. I think the role you play isn't fundraising and donating. I think the role you play is finding something that's already existing and showing them how you can do it in a way that makes everyone happy and brings more money in the door. Because at the end of the day, people like to see that what they do and what they give matters. And it does. And there are so many great organizations that aren't leaning into their most powerful asset, which is they are doing the shit.

Connor: Yeah. Yeah. And I think when people see a parent or a CHD patient as involved as you and I are, I think that speaks volumes versus when you hear a cardiologist talk about it. I think both sides are very impactful because the cardiologist is the subject matter expert. But to see that people outside of the medical field are also so passionate about this, I think a lot of people kind of flock to that. A lot of people, you know, "You're a parent trying to help other parents. That's awesome. I want to help." As opposed to, you know, maybe you're some medical professional who, well, you're just trying to raise money for XYZ. I think they both have their roles and they're both very important, but I think being from outside of the medical field, it says a lot.

Drezden: I agree with you there. And I don't know why, but what pops into my head is each cardiac researcher and cardiologist just needs a patient slash hype man behind them whenever they present, just cheering and shouting. You know, we've talked about a lot here, and before I roll into my close, which is the big question, what have I forgotten to ask you that we want to get in here? We've got time still.

Connor: You know, we've touched on everything at a really high level. I think that, I'll say, going back, I'm not going to say circling back, going back to the at-home and the relationship stuff, not looking at it through a lens of the foundation. I think it's just important to reiterate that everything is a team sport when it comes to CHD. You definitely can't do it on your own. We have board members in our organization who help advocate for the organization. We have a board member who is working on standing up a community-based program that is going to give inpatient families someone to talk to, other heart parents, within 24 hours, if possible. So say, like, we've had a lot of people reach out to us who have received our care packages. They DM us on Instagram and they say, "Hey, thank you." Or first-time parents: "This is so hard." And something that struck me as a common theme for everybody is it feels good to talk to somebody who understands. So that was something important that we're also doing. But going back to what I was saying, we have board members doing that. We have board members who are planning other events for next year. And then at home, Kali does work in this organization as well, but she's downstairs watching Dawson right now so that we can film this podcast. I wouldn't be able to do it without her. You know, if she was just like, "Well, no, it's Sunday. I want to go to a book club or whatever it is", we recognize that we have to, that there's some give-and-take. You have to work as a team. So I think it's just really important to hit on that again, because it is best for your child when parents can work together through everything.

Drezden: I think next episode I'll talk to her while you watch the baby.

Connor: Please, she would love to be a part of the conversation. And we'll, you can bet he and I will be photobombing if that's the case.

Drezden: How old do babies have to be to talk? I always forget that.

Connor: He can say "uh-oh."

Drezden: Well, that means he could do my job. He'd go, "uh-oh", what else does he say?

Connor: He learned "wow" like last night. We were watching a documentary, the Red Bull skier who went down Everest, who skied down Everest. And the whole time we were going, "wow, wow." And he started going, "wow."

Drezden: Oh God. Yeah, I know what happened to me when I was watching that stuff. And you gotta be careful not to raise an adrenaline junkie. Especially because, after a few heart surgeries, it kind of takes a lot to get your adrenaline up there and you end up racing motorcycles and doing other stuff you shouldn't. Anyway, I'm not speaking from experience. So, all that being said, everything you guys have gone through, here is my big question to ask. And it's going to be different for this because I've already asked it six ways from Sunday. Given everything we've discussed, everything you've gone through, after a fairly recent entrance into this world, the CHD world, what does CHD mean to you at this point, with the understanding that it's probably going to change a lot over the next couple of decades? And not the textbook definition, what does it mean when you think of congenital heart disease?

Connor: Yep. To me, CHD is the fight that I never asked for, that we never asked for. But it is the purpose that we can't walk away from. You know, it started as a diagnosis that crushed every expectation we had of pregnancy and parenthood and our expectations for Dawson. But now it is the reason that we advocate, we build, we fundraise, we create something for families that they can depend on. It became a line in my life, in my timeline, where it split into before and after. And it is something that we are choosing to build for in that "after."

Drezden: Very hopeful message without explicitly saying "hope." I love that. It's authentic. It was beautiful.

Connor: Thank you.

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[OUTRO]

Drezden: And that was Connor Hill of the Stronger Hearts Foundation. Like he said, you can learn more at StrongerHeartsFoundation.com and follow them on all social media, Stronger Hearts Foundation. Thank you all so much for listening to this episode and I will talk to you all soon.