https://open.spotify.com/episode/3Z63APdd62NnuLpXFTRAVv
What would you do if your child was given two weeks to live?
In this deeply moving episode of Knoodle Founders Hour, host Rosaria Cain sits down with Anthony Conti, founder of The Purple Society—a grassroots nonprofit born from a father’s fight to save his daughter’s life.
After his 12-year-old daughter Nitalia was diagnosed with a rare brain tumor, Anthony entered a world most parents never imagine—navigating broken healthcare systems, searching global clinical trials, and refusing to accept “there’s nothing more we can do.” What followed became a mission that’s now helping families across the country fight pediatric cancer with better tools, better information, and—most importantly—hope.
This episode reveals:
- The raw, behind-the-scenes reality of a pediatric cancer diagnosis
- How one father built an early AI-powered system to track global clinical trials
- Why most families are forced to navigate life-or-death decisions alone
- The critical role of advocacy, network, and second opinions in survival
- How The Purple Society directly impacts families—not institutions
- The truth about what’s broken in the healthcare system—and how to fight back
You’ll also hear the powerful story of how a young girl’s compassion sparked a movement—one that now provides research, financial relief, and emotional support to families in the trenches.
This is more than a founder story. It’s a masterclass in resilience, purpose, and what it really means to show up when everything is on the line.
If you’ve ever wondered how one person can turn unimaginable pain into impact—or how to navigate crisis when the stakes couldn’t be higher—this episode is one you won’t forget.
Listen now and discover how hope, technology, and human connection are changing the fight against pediatric cancer.
Full Transcript:
Rosaria Cain 00:00
Good morning, Anthony, welcome.
Anthony Conti 00:02
Good morning.
Rosaria Cain 00:02
Give me your elevator speech on the Purple Society and its mission, and try not to make me cry, because I’ve already done it.
Anthony Conti 00:10
Wow. I’ll try not to cry also. We are a grassroots charity started by a family that actually is in the trenches daily. We focus on peer reviewed research, evidence based research. We do a lot of research on alternate medications, alternate treatments, which you can’t find in the general regular establishment of hospitals. And then we do resources for families, and there’s a big there’s a big faith component to what we do, because we do believe that the family being together, and regardless of what faith you are, I believe that faith gives you that cornerstone that you can actually lean on when your world crumbles.
Rosaria Cain 01:02
So tell us about, tell us about what’s behind all this research.
Anthony Conti 01:06
So I’ll tell you the–
Rosaria Cain 01:08
I have to ask you this so everyone knows exactly how, how much depth this, this work, has.
Anthony Conti 01:16
So we’ve focused, so we’re 16 years old. The foundation has been around for 16, years. You know, we can get deeper into the story of the foundation, but the I’m a digital person. I’ve always been in the digital space, and I actually started out the research component of The Purple Society by building a iPad app. And this is going back 15 years building an iPad app while we were living in the hospital with our daughter, Nitalia, who was at that time, she was in a coma. And I was having, as a father, you know, my job is to protect and I was having the hardest time finding any peer reviewed research treatments, and I was looking all around the world to try and find something, and it really was taken up, you know, 12 to 15 hours a day of me doing research and then going to my medical team and saying, “Hey, here’s two things that I found that, You know, this is happening in Israel. This is happening in China. You know, is this something we can get here?” And that was that Children’s Hospital of Philadelphia, and one of the doctors, one of the head of the oncology unit, had come to me and said, “Hey, listen”. What ended up happening is I built this iPad app that automatically went out and grabbed all of the clinical trials around the world, told me what phases they were in, and then would spit it out to me in the morning. So when I woke up, we were living in the hospital in her and it was before AI, before AI. This is all manual stuff you had to do. So I would wake I would wake up in the morning, and there would be pages and pages of stuff to go through and then bring to my medical team for Nitalia, I built a system that started to kind of automate that workflow for me. So in the morning, when I got up, I had the highest the things that had the brightest light at the end of the tunnel I could take to my team and say, Hey, look at this. What ended up happening was the one of the heads of her name is Dr. Lang, one of the heads of Children’s Hospital of Philadelphia, the oncology unit, came to me and said, “Hey, could we start to use that?” I said, “Yeah, you can start to use it. You know, it’s just download the app, and you could use it”. So they did, and they started using it in the hospital, and then other patients started using it on the oncology unit. So that kind of put me into that world of, hey, look, there’s a need. I have a specialty in creating this stuff. So let me use my talent that I have to try and give back. And that’s how the research started. From there to now is a world of difference. You know, we have a full LLM. So for those of you that don’t know AI, we have our own private LLM that we built ourselves, large learning model. We have our own AI system that actually goes out and tracks every clinical trial, ones that have been completed, what the results were, and ones that are ongoing and ones that are upcoming, for all different types of cancers. Obviously, we’re focused on pediatric cancers, but it does it in a split second. So I could actually go into The Purple Society’s website and say, sign up and go in and it’s all free. And by the way, 100% free, you will never be charged for anything. Go in and say, you know, anaplastic astrocytoma, a brain tumor, rare brain tumor in children. And it’ll pull up every clinical trial around the world, and I’ll revert back to kind of where we were as a family when Nitalia was fighting. There was a trial that I had found was Avian Bird Flu trial and it was in Tel Aviv in Israel, and we were going to sell our home, our cars, sell everything, and go to Israel. And because this had light at the end of the tunnel, it was something there was nothing for, Nitalia had anaplastic astrocytoma, and her tumor was actually her thalamus. So they couldn’t, you know, they couldn’t get it all out without making Nitalia not Nitalia anymore. And I can get deeper into that story later, but we were ready to go. I’m not the only family that is like that. Every single day, families around this country deal with that same exact thing. This year, it’ll be 15 to 16,000 kids under the age of 14 that are going to be diagnosed with some type of cancer. That’s 15 to 16,000 families that are being destroyed with that with that knowledge and it was our blessing to have doctors that actually said, “Hey, listen, before you sell everything, why don’t you try St Jude? Let me put you in touch with someone over at St Jude, and if it’s available in the world, they’ll be able to get it for you.” And that’s how we that’s how we got on the journey, and that’s how we’ve gone from there to here. And today, we’re a totally different foundation than we were 16 years ago, still doing the same core thing. We’re in the trenches, and we’re here to help families not go it alone. And I wish I had someone that did that with me when we started our journey.
Rosaria Cain 06:36
Tell me about the story of how you found out with Nitalia.
Anthony Conti 06:39
Now I’ll really try not to cry.
Rosaria Cain 06:41
I’m sorry. I might join you, I warn you.
Anthony Conti 06:45
So I was working in Chicago, and my wife called me, and she said Nitalia. Nitalia was 12 at the time, and she said Nitalia is like, once a week she’s saying that she’s getting a headache, so I’m going to take her to the eye doctor, and maybe she needs glasses. She was a violin player, played sports, dance. Super healthy, little girl and tall, lanky, big brown eyes, brown curly hair, just a picture of health. So I said, Okay, take her to the take her to the eye doctor. Let me know what they say I go. On my day at work, she’s here in Scottsdale. Takes her to the to the eye doctor. They do the eye exam, and at the end of the eye exam, the doctor says, “We want to dilate her pupils.” It’s a standard thing where you’re doing the full eye exam. Okay, so she dilates Nitalia’s pupils, and now I’m going to tell you from my wife’s perspective, because my wife called me and told me this. She looked in Nitalia’s eyes and she immediately, my wife says she immediately turned white like just all the blood ran out of her face, and she turned around. She was on one of those little spinning chairs, and she turned around and said to the assistant that was in the room, “Get this little girl, an MRI stat.” And my wife was standing there, and my wife’s like, what is going on? Like, what do you mean? “Get her an MRI.” We’re here. I thought you needed glasses. Like, you know what is going on? And she went on to tell my wife that she sees the optic nerve was so swollen in her eyes that she thought something was drastically wrong. So my wife obviously called me immediately. I jumped on a plane immediately, and came home, and we got her into St Joe’s, it was the closest MRI that we can get back then there were no MRIs at like, Phoenix Children’s, or at that time, it was Cardon Children’s down in Chandler, so you had to go to St Joe’s. We got the MRI done and this goes to kind of why we are who we are as a foundation. The crazy thing is, we had to go to St Joe’s, which Barrows is, like one of the best Brain and Spine surgical centers in the world. So we got our MRI there. But because Nitalia was was actually a patient of Phoenix Children’s. They couldn’t tell us the results there. We had to drive from from St Joe’s over to Phoenix Children’s, and then wait to get into Phoenix Children’s so someone could come in and tell us what the scans were.
Rosaria Cain 09:38
For heaven’s sake.
Anthony Conti 09:39
So just so silly. It’s just one of the many things that are broken in our system. So there we are sitting at Phoenix Children’s Hospital, waiting for a doctor to come out and tell us what’s going on. Obviously, as parents now, Nitalia is totally fine. Natalia is like, “Oh, it’s going to be fine. Mom, it’s gonna be fine. Dad, relax. It’s gonna be fine.” My wife and I are, our legs are like spaghetti. I mean, we can’t, we’re we’re thinking, “Oh my god”
Rosaria Cain 10:08
It’s an emotional response, yeah.
Anthony Conti 10:10
And every second feels like a day. I mean, it’s you’re just waiting and waiting and waiting. Finally, a guy I’ve never met before, never saw before, never saw my daughter before, comes in and says, “Could you guys follow me?” And he took us back to this was in the in the emergency area. They took us back to little emergency room, and the doctor looks in front of Nitalia, looks at looks at us, and says, “Okay, Nitalia, why don’t you take a seat there? Could I see you two outside of outside of the room?”, and I’m like, What is going on? Like, you know, something’s not right here. So Natalia sits down again. She’s totally normal. We walk out of the room, and the only other place to have the conversation was in a surgical room. So he takes us to the surgical room, and he has a little, the screen is like, maybe, like a 13-inch iPad at the wasn’t an iPad, but it’s a small, little, tiny screen, black and white screen. And he says, I have some really hard news for you guys. The scans came back, and Nitalia has a baseball size tumor in the center of her brain. And he turns the thing to show us, and it’s literally… I have no clue what I’m looking at. It’s a black and white screen of, I don’t know what what that scan is. And he’s like, and we need to take Nitalia now for immediate brain surgery, like now. We need to do that now. And obviously my wife and I are like, What the hell is going on? This is, this is insane. My daughter is fine. She’s in the other room. She’s totally fine. I mean, she was running track the day before, like, she’s, you know, she’s totally fine. So he said, we need to, he had a whole stack of paperwork, and he’s like, we need for you to sign the releases, because we need to take Nitalia right now into brain surgery and immediately, and you and I have been having a conversation about being Italian, immediately, my fatherly instincts kicked in and being Italian, I don’t know if this is good or bad, but being Italian, I am very, very protective of my daughters. I have three daughters, very protective of my daughters. So immediately, the first thing that came to my mind was, “Are you the best surgeon in the world?” I just asked him outright. I went, “Well, are you the best surgeon in the world?” And he went, “No, I’m not the best surgeon. I’m a great surgeon, but I’m not the best surgeon.” I said, “Well, then you’re not cutting my daughter’s head open. We’re not talking about, you know, a broken arm here, or, you know, we’re talking about brain surgery. So who’s the best in the world?” And he said to me, “Dr. Spetzler is probably the best brain surgery in the world. He’s over at Barrows”, which is right down the street, and he says “He was my mentor when I was in college, and that would be the guy that I would say is the best, but there’s no way you’re going to get into get in to see him. There’s no way people come from all over the world to see him. You’re never going to get in to see him. And time is of the essence for Nitalia.” So I said, “I need some time with my wife. I need to talk to my wife.” And, you know, Suzann, obviously, was just distraught. And you can’t think. You don’t know what to do. It’s a totally alien world to be. I mean, whoever thinks of, oh, well, maybe someday my son or my daughter are gonna have a brain tumor and I need to figure it out. I need to understand what that world is and how that world operates. No one. I wouldn’t wish that on my worst enemy. Words can’t describe how the depths of where you go when that happens. So I just said to my wife, “Look, it’s, it’s down the street. Let’s go see if we can get Dr. Spetzler.” Now I will say we were very blessed to have an unbelievable community. Our network was just phenomenal, and we had friends that were, I hate to say it this way, but friends that were in higher places in the community, and we reached out.
Rosaria Cain 14:24
People that new people.
Anthony Conti 14:25
Yeah, people that knew people. So my wife actually reached out to a friend of hers, and whose daughter went to school with Nitalia, and sons went to school with Nitalia. And basically said, “We need to get into Barrows. This doctor, Dr. Spetzler, we need to get in and see him.” And her husband is a surgeon. My wife’s friend’s husband is a surgeon. And he actually said, “Oh yeah, I know. I know Spetlzer, let me make a phone call for you.” And with, I mean, it was literally that quick, picked up the phone and said, “Hey, listen, we have, you know, a child, need to get in there, they’re over at Phoenix Children’s right now.” And we were, we were in there. I think it was on, I think that was maybe a Tuesday, and I think on Thursday, we were in St, Joe’s. You know, it’s amazing. I’ve been working in the cancer world for 16 years, and it still amazes me today, the strength that children have. I’ve seen grown men that are diagnosed with liver cancer, lung cancer, or whatever, that break down and their their lives are destroyed, and they can’t find a ray of sunshine in anything that they do anymore. And children, for some reason, are totally different. We went back to the room and we told Nitalia that “They found something in your brain.”, it’s a little 12 year old girl, “They found something in your brain. They want to do surgery. We’re going to look for the best doctor for you. We’re going to do the best that we can.” I said, “we have to go home and tell your sisters, because we’re trying to get you into this other hospital. So things are going to change. We’re going to pull the girls out of school right now. We have to tell them, so mommy and daddy will go home and we’ll tell them.” And she goes, “No, Mom, Dad” –this is not a word of lie, “No, mommy and daddy, I’m gonna go home with you guys. I want to tell my sisters. I want to sit down with them, and I want to tell my sisters, Nitalia was 12, Aviona was 10, and Isabella was eight. And she did that. She went, we went in their bedroom. They share a room. They have three little beds, like the three bears. And she sat on the little stool that’s in front of her bed, and her sister sat next to her, and Suzann, and I just stood there. And, I mean, it was just like a cloud, like and she said, “I have they found something in my head, and I’m going to have surgery, but I’m going to be okay, so don’t worry about me. I’m going to be fine.” And that was her attitude from day one to the very last breath she took. It, it’s, it was, it’s going to be okay. So yeah, that’s how we found out about it. Andshe went through surgery. She went through so many surgeries. In our first surgery at Barrows, it was an eight and a half hour surgery, and we sat down. They have a room downstairs where you sit and wait for the surgeons to come out. So it was myself, my wife, my daughters, my dad and my mom, and we sat for eight and a half hours, and the surgeon came down, and it was Dr. Spetzler and Dr. Rekate who, I cannot even tell you what an amazing man Dr. Rekate is, and an amazing surgeon. But Dr Rekate came down, and he came walking in, and I knew something was wrong as soon as he walked in. And he walked in, and he just looked at me and Suzann, and he said, “We took out as much as we could possibly take out without harming Nitalia” and literally Suzann and I just slid down the wall, and he said, “It’s cancerous. There’s not much more we can do.” And that’s when I kind of went haywire into Papa Bear mode, which, you know, I wanted to, I wanted to tear everything down.
Rosaria Cain 18:38
Hit something.
Anthony Conti 18:39
I mean, it’s just was things, things that you never imagined could actually happen to you, nor would you ever think of that. So I said to him, “What should I do? What should we do?” And he said, “Let me take a day or two and figure out what we can do with Nitalia and how you know what treatments are available,” and blah, blah, blah, and so we wound up going to St. Jude and he had his college roommate, Dr Rekate’s college roommate is going to talk about network, because her network is worth its weight in gold. His college roommate, Dr. Boop is a brain surgeon at Le Bonheur Hospital, which is connected to St. Jude in Memphis, and so that’s where all the kids that are at St Jude, they get their surgeries at Le Bonheur hospital. So he picked up the phone, and he called up Dr. Boop, and Dr. Boop said, “Yes, we’ll get her into St Jude. We have some cutting edge that’s a new molecular treatment called erlotinib. There was only 19 kids that were going to be accepted on the trial.” He picked up the phone called Dr. Boop, and within two days, we were in Memphis, Tennessee. And again, network, we knew no one in Memphis, Tennessee. I had never been to Memphis, Tennessee, and we had friends here that knew people in Memphis, that picked up the phone and said, “There’s a family that needs you guys. Could you find a place to live? They’re going to be at St Jude. They’re going to need a car. They’re going to need this is a family that’s distraught. Their daughter was just diagnosed with a brain tumor, went through surgeries,” and Nitalia had a 12 inch scar from temple to temple going across the top of her head. Her head was shaved and stitches all through her head, and here we are going, “Okay, how do we get to Memphis? And now we have to get her on a treatment that we have no clue what the treatment is” but because of our network, we literally stepped off of the plane in Memphis, and there were people waiting for us. This by the way, was we got to Memphis Christmas Eve. So this was Christmas Eve when we got to Memphis, and they had a condo waiting for us, and when we walked in, they had a Christmas tree up for us. People had already cooked food for us. I mean, when I tell you, network means everything. It means everything, because today I work with families where the mom is a single mom sitting in a room in some regional hospital, and her child is on a million machines, and she has to get up every day and go to work because she’s worried about losing her insurance. They have no network. It’s, it’s, the child is by themselves most, most of the day, because the mother has to go to work to be make sure she has insurance so she could pay. It’s a disgusting, disgusting world. We were so blessed that we had people that stood up, people that said, “Hey, it’s my turn. It’s my turn to help. And I have, I have the network to help. So let me help.” And that follows through in everything that we do, still today, 16 years later, still today, that’s how we approach it. Anthony needs help. His son or his daughter has been diagnosed. Who do we know that can help them? You know, they’re in a regional hospital in Montana. How do we get them to the right treatment? How do we get them to the best doctors, not the doctor that’s there at the moment, who? How do we get them to the best doctor? Because that’s what helped us. You know Nitalia was giving. I know I’m all over the place, so please steer me if you want me to go in a different direction.
Rosaria Cain 22:06
I wouldn’t dream ot it.
Anthony Conti 22:10
Nitalia was given two weeks to live. We actually sat with a group at Phoenix Children’s Hospital, of all these oncologists, and they said, “Nitalia is going to be gone in two weeks.” This is after her surgery. “Nitalia is going to be going in two weeks, so instead of putting her on any type of medications, we suggest you take her to Disneyland.” That’s exactly the advice they gave us. My wife will tell you, I fired everybody at that table. I literally sat there and I said, “Every one of you, I never want to see your faces again. You’re all fired. I want someone that’s going to come in and say, we’re going to try everything to save your daughter. We’re going to throw everything we have.” I already told everybody. I don’t care where I have to go, what I have to do, I’m going to save my daughter. And I believe that to my core, I believe that that’s what was going to happen. So I needed those people on my team. I didn’t need the people to tell me to go to Disneyland. I needed the people that were going to be in the trenches with me, that we’re going to fight and we’re going to do everything in their power and in their network to help my daughter. Nitalia, lived two and a half years. Traveled through Europe as a Make A Wish child. One part of her thing was to go to Italy. We went to Italy, we went to Spain, we went to France. We traveled all through Europe. She walked the Coliseum steps. This is after multiple surgeries, and they told us she would she would have been gone in two weeks. You know, when you have the right network, you have the right tools and the right doctors and nurses, and when you’re an advocate for your child, that’s when life is expanded. The unfortunate truth of, I hate to call it an industry, but the industry is that it’s, how fast can we get you in and out of the hospital. And, you know, I don’t know if you can curse on on the podcast, but I don’t want to sound like I’m full of piss, and because I’m not, you
Rosaria Cain 24:07
You can, yeah, we’re not FCC regulated.
Anthony Conti 24:10
It’s, it’s you’re fighting for your child, and if you don’t advocate for them, no one will. So that’s how we approach every single family we work with. And I swear to you, I see Nitalia in every single child that we work with, every single one when I walk into a room and you know, I have a picture on our website. You can even look at it as a little girl up at Phoenix Children’s Hospital that walked in a room and she was pulling her little, her little she had a little IV on her, and she was pulling a little IV thing, and she may have been, I don’t know, maybe six years old, big, brown eyes, curly brown hair, and she came walking in, and we had just started working with the mom and dad. I haven’t even met the little girl yet, and she came walking into the playroom, and I was sitting in the playroom with the mom, and my wife is sitting next to her, and she came walking up to her mom, and I was like, “Oh, my God, if this is not a sign that this is Nitalia, it looked like those same big brown eyes, that same curly brown hair. I was just like, I see her. I know she’s in every one of these kids.” So, yeah, so, so that’s how the diagnosis happened. And I gave you a glimpse.
Rosaria Cain 25:19
Great context. And then who founded
Anthony Conti 25:26
She did when we were at St. Jude. So we were at St. Jude, and she was on that erlotinib treatment, and she was actually responding to it very, very well. And while we were there again, this is, you know, from the mouths of babes, she was going through her radiation treatments. So she would go to radiation every day, and when she would get out of her radiation treatments, she would be in a wheelchair because she had lost a ton of weight, and she was just, you know, fighting. And so I would push her up and, me, my wife and the girls, because we always stayed together. Was part of our tenant that we would not split up. We would not split up wherever we had to go, we were going as a family unit. So we’re all walking upstairs. We take the little elevator upstairs. We’re all walking in right in the center of St. Jude, where the radiation department is. And a woman just walked up to Nitalia and had knitted a big purple blanket. And one of the things, when children are going through radiation treatment, they’re always freezing. I don’t care how hot it is outside or how cold it is, they’re always frozen. So this woman walked up to her, and just a little older woman, and she had knitted this really beautiful purple blanket. And she said, “Hi, honey. You know what’s your name?” And she said, “Oh, I’m Nitalia.” And she said, “Well, I have a blanket for you.” And she gave her the blanket. And that actually started Nitalia, from that day on, was like, “I want to do something. I want to give back to the families. Why am I able to go all these places?” Because she had befriended a lot of people on the floors, a lot of the other children. And she’s like, “Why do I have all this? Why are mommy and daddy with me, and my sisters are here with me, but the little boy down the hall is sitting with a stuffed animal on his bed. No one even goes and sees him. Like, why? Why is that? I want to change that.” And when that woman gave her the blanket, she said, the first thing I want to do, dad is I want to we didn’t have a charity yet. She goes. “First thing I want to do is, I want to do is I want to ask nanny,” my mom, who knitted, “I want to ask nanny to start knitting with all her friends and make blankets and caps for all the kids at St Jude.” So I said, “Okay, we’ll do that. We’ll do that. So I talked to my mom. I said, Mom, could you ask your church group to start knitting and send us little chemo caps, we call them and blankets, and we’re going to call it Nitalia’s Blankets, and she wants to hand out blankets for like, six or eight months, literally, Nitalia would stand at that front where they have a little round, like desk in the front, and she would stand out there, and she would give out chemo caps. Excuse me. Sorry. I’m trying not to cry. She would give out chemo caps and blankets to all the kids. So that kind of started us into the into the world of hey, we want to find a way for her to give back. And then one day, we were actually at Children’s Hospital Philadelphia. We had moved her over to we went to New Jersey on a on a trip to see my mother in law. And while we were there, Nitalia had a seizure, and we were helicoptered to Children’s Hospital Philadelphia. While we were in Children’s Hospital Philadelphia, she had met this little girl that was on the same floor, and was that exact scenario of the single mom in Philadelphia couldn’t be there. So my wife, Suzann, used to go and sit with the little girl and she would bring the mom coffee all the time. That’s really her, my wife’s role is really the she’s the one that’s involved with all the moms, she’s really deepened with all the children, with all the families. I usually am the Ronald McDonald guy with the dads. Three o’clock in the morning, I’m having coffee in Ronald McDonald House with the dads. You know, it’s just different communication styles. So she said that she’s, I don’t want to say her name because, you know, it’s wouldn’t be right. But she, Nitalia said, “It’s not right that she’s down there. I want to do something. Could we start something where we help everybody? We could help all these kids, whatever they need. If we could help them, we can help them get it if they need research, if they need whatever they need, we can, we can get it for them, dad.” So that’s how we started. And we said, Okay, I had no clue how to start a 501(c)(3), foundation. You know what it takes to put one together? Nothing. But again, our network, we had plenty of friends that understood that, that knew how to set them up, and we got help from our community and that’s how it got launched. And it really took off right away, with grass-rootsy people that wanted to, you know, I always say I have friends that are super wealthy and I have friends that are super poor. They both have one thing in common, when they walk through that oncology unit with me, their lives change. I always say this, the easiest thing in the world is cut a check. Easiest thing in the world, I have so many friends that make tons of money, and all they do every year is cut a check, cut a check, cut a check. And that’s great, because the hospitals need that. Charities need that. But it’s different when you and I go up to Phoenix Children’s and walk through the oncology unit and you see a mom sitting in with her son or daughter, and you know that family story and that they’re about to lose their house because they owe $3,600 in back mortgage because they’ve spent everything on keeping their child alive. It’s a lot different when you cut a check for $3,600 to a woman sitting in a hospital room that, you know, you just saved their home, than cutting a $50,000 check to Phoenix Children’s. And I’m not, yeah, it’s very personal, and it really, we call it, a soul payment. It really is. You’re directly affecting change. And that’s what really magnified how the the first 10 years of the foundation, we really were a foundation trying to do everything and be everything to all people and through that maturity, we kind of learned that you can’t do that. You need to, you need to focus on who needs the resources. And in my opinion, again, I’m not full of piss and vinegar. I love, you know, the people, the friends and doctors I have at hospitals around the country. But at the end of the day, it’s really about that patient. It’s not about, you know, hey, we’re doing this big, giant event, and we’re gonna raise $48 million and, yeah, that’s great. And you need that to run your hospital. You need that to do your thing. But of that $48 million I could tell you from actually being in the rooms, and I know a lot of nurses could tell you this too. There’s families that you would change their lives with $10,000 I physically have driven down to Guadalupe with $5,000 in cash to a family that sold their entire everything they owned. I walked in their house, and the mom and the boy is 16 years old. He passed away. God rest his soul. But the mom and the 16 year old boy are sitting on beach chairs in an empty home, and they were getting their they were getting ready to lose their house. They had sold everything, and I physically out of my own pocket, took five grand out of the bank, put it in my pocket, and drove down to meet with the mom and gave her and said, pay your house, pay your mortgage so you could stay in the house. We also paid for his funeral. So we do things like that, where it’s direct, and if I can’t, if I don’t have the money to do it, we don’t do a lot of fundraising anymore. For the past six or seven years, we do hardly any fundraising. We rely on our community. I would reach out to you directly and say, Hey, listen, there’s a little girl, her family is in this situation. Are you able to help? And then I’ll connect you two I don’t want to be a money handler. I don’t want to be in the middle the charity doesn’t want to be in the middle.
Rosaria Cain 33:06
So It’s direct. So people see the benefits of what they give.
Anthony Conti 33:07
100% 100% and like I said, the first 10 years, it was different. We were in that mouse wheel of hey, fundraisers, doing walks, doing events, doing a million things and trying to, there’s only so many resources that are available, and we believe, as as a foundation, as and as a family, we believe that those resources rightfully belong to the patient. They don’t belong to XYZ hospital. That’s this, you know, deciding to put up another building or buy 10 more machines. Yes, that stuff is needed, but it’s a different world, and as a small charity, you cannot compete in that world. Regardless of political persuasion, our health system is totally broken, and hospitals are a business, and when you have a PNL, that means there’s a number on that child’s head, and I could tell you some stories that would, I think, rock your world of children that are, you know, there’s a number on their head. We need to get them out of that ICU quick. Let’s send them over to the trach unit, you know, because they want that bed. And we, as a charity, fight for that. We stand there. And the families that we work with, they know I’m in it and I’m going to be there. I’m going to be an advocate for that child. They know they could walk out of that room and I’m going to have that child’s best interest. I’m never going to make a decision based on, oh, well, you know that’s better suited for this child. Let’s go bring them to the trach unit, and we can free up this bed and put another person in that bed. I’m going to fight for that child with my last breath, just like if it was my child. So that’s how we approach things, which is different than 99.9% of foundations that are out there.
Rosaria Cain 33:56
And your whole family’s involved, correct? Did I see that on the website? Everyone’s got your same last name?
Anthony Conti 34:56
Yes, everyone has the same last name. My wife, like I said, is really the one that drives the ship. She’s the one that’s in it, day in and day out. I’m obviously on the tech side. I do most of the research. I do the AI, all the AI programming, all the AI LLM stuff. I’m the one that connects to the databases at our partners locations. So I do a lot of that tech stuff, and I do a lot of meetings with the dads being in this role for so long, dads are different than moms. They both have the same love, but they just approach things different. So a mom is always better with a mom, and a dad is always better with a dad. So I do a lot of the dad stuff. And then my daughters Aviona and Isabella. My daughter, Aviona is with Stanford and Johns Hopkins in their AI labs. So she works in surgical AI. She’s very well versed in it. And she runs, she runs some of the junior Purple Societies at colleges. And then Isabella is a second year law student at Pepperdine in California. And she’s actually runs the junior Purple Society, and she helps a lot with the Purple Society itself, too, on the legal side, so she does a lot of really cool stuff with us.
Rosaria Cain 36:10
So they’re all greatly, greatly moved and influenced.
Anthony Conti 36:14
Yeah, I think we were all given—
Rosaria Cain 36:17
Change the trajectory of each of your lives.
Anthony Conti 36:19
100%. I don’t know how it couldn’t. You know, one of the things that we do in in the foundation, that a lot of other foundations don’t do, is we really look at the family unit as strength. The number is like 80% of married couples break up when their child is diagnosed with cancer. So it’s, it’s a very, very difficult road. It’s causes the financial stresses. It causes the the stresses of the just of the it breaks the family so from we love to get in at the very beginning, at the beginning of the diagnosis, so we can try and shore up that family unit to help them understand, I don’t care what your marriage was like before, but now you guys are going to need each other, especially if you have other children. You’re going to you’re going to really need to be the pillars of this family. So we need to talk. Let’s have a conversation.
Rosaria Cain 37:18
So you do some marriage counseling.
Anthony Conti 37:20
I wouldn’t call it marriage counseling. It’s really just about understanding, if you and I are going into trenches together, let’s understand what the war we’re going to fight is. I need to lean on you as much as you’re going to need to lean on me.
Rosaria Cain 37:34
So sounds like marriage counseling, and that sounds like a good role, truly.
Anthony Conti 37:39
It is. I believe that there’s a lot of strength that comes from family. And I believe it’s, it’s a, it’s an unseen strength. I mean, I’ve seen families that break apart, and I’ve seen families that stay together, and regardless of what the outcome is, during that period of fighting the war, you have someone to lean on. I mean, I can’t tell you the amount of times I’ve broken down and literally crawled up in a ball in my bathroom and I’m losing my mind, and my wife steps in to lift me, and the same thing for her, and we’ve done that with every family we’ve worked with. Now, do they always stay together? No, but you need to understand that you’re in a war for your child’s life, and it really is a war, so you better shore up and get ready to fight. And some families do. Some families don’t.
Rosaria Cain 38:30
But did you ever think you would run or or assisted in the founding of a nonprofit?
Anthony Conti 38:36
Never, never. Wasn’t even on my radar screen. I had just become a vice president of a big media company, and was building out teams all over the country. That’s why I was living in Chicago. I was in Salt Lake City, New York, Chicago, and I would spend time in each of the markets, building out digital teams at that time. And that was my trajectory, was really to be in that media space, and that’s what I did. Never did I go, “Oh, I want to be in the nonprofit world.”
Rosaria Cain 39:06
What do you want to be known for?
Anthony Conti 39:07
I think of all things, just being a good person. I mean, at the end of the day, when my daughter said to me, “Dad, could you do this?” She wasn’t saying, could I do this? Because it was going to be a big Foundation, or was going to make millions of dollars, or it was going to give me, you know, we call it plumage, you know, it’s going to give me feathers in my cap. She wanted to do that because she wanted to help every child that was on that floor. So she was a good person to her core. She was that person that was, to be blunt, she was a 12 year old little girl fighting for a life in a hospital bed that had multiple brain surgeries and here she is looking at her father saying, “Dad, Could you, could you do this for them?” She never once said to me, Dad, could you do this research for me? Dad, could you go get this for me? Never once and I see that in almost every child we work with, they’re always about helping. Totally different than adults. And so I mean to answer your question, I think just being a good person, when I take my last breath, I hope people look and say he was a good person. You know?
Rosaria Cain 40:19
I have nothing else to add. Thank you for the interview
Anthony Conti 40:25
Thank you for having me. Thank you for allowing me to tell the story.
Rosaria Cain 40:30
It’ll help everyone.
Anthony Conti 40:31
I hope so.
Rosaria Cain 40:31
Thank you.