#27 - Mobilizing Hope and Funding for Young Cancer Fighters with Nicole De Lara Puente

When Nicole de Lara Puente, CEO of the Live Like Bella Childhood Cancer Foundation, joined our show, she brought more than her story; she brought the enduring spirit of Bella, a young girl whose courage in the face of cancer sparked a global crusade. Nicole's transition from various leadership roles in major media outlets across Europe and Latin America to leading an organization that has raised over $35 million for childhood cancer research is a poignant reminder of the impact one life can have. This episode is a tribute to the unyielding support of communities and the transformative power of storytelling in the quest to provide hope to families grappling with this harrowing diagnosis.

In our heartfelt discussion, we confront the stark realities that children with cancer and their families must endure, emphasizing the necessity for research tailored to their unique needs. The Live Like Bella foundation's efforts have been instrumental in propelling forward clinical trials and research funding in Florida, highlighting a pressing issue: the critical lack of advanced treatment options for our youngest warriors. Nicole's call to action is not just a plea but a rallying cry for us all to join forces in the battle against pediatric cancer.

We also peel back the curtain on the intricacies of nonprofit fundraising, where Nicole sheds light on the importance of diversifying income streams and the profound influence of donor engagement. This episode is an invaluable resource for anyone involved in philanthropy, offering strategic advice on sustaining charitable efforts and the significance of fostering connections beyond the dollars raised. Nicole's unwavering dedication to the cause and her insights on rallying community support make this conversation a masterclass in driving change for a deeply personal mission.

Show notes

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Transcript

Collin: 0:09

Well, welcome back to the Nonprofit Renaissance, where we help nonprofit leaders go further and grow faster. We've got a great one for you today. Today's episode is coming all the way to you from Miami, Florida, where H is joined by. Coming all the way to you from Miami Florida, where H is joined by Nicole de Lara Puenta, a visionary leader in the fight against childhood cancer. As a CEO of Live Like Bella Childhood Cancer Foundation, Nicole has been instrumental in spearheading initiatives that have mobilized over $35 million for research. She's impacted countless lives across the globe. So stay tuned as we dive into Nicole's inspiring journey and her groundbreaking work and her passion for making a difference in the lives of children who are battling cancer. So, without further ado, let's go and let's grow.

Heredes: 0:58

We're talking to Nicole, and it's Nicole De Lara Puente. Did I get that right? You got it perfect, okay, cause how did you pronounce my name earlier, Nicole?

Nicole De Lara Puente: 1:06

Just H, I didn't even try because you said you were getting butchered too much. I wasn't going to be like that girl Smart smart C-E-D-O Director officer leader.

Heredes: 1:20

The one CEO at Live Like Bella, did I get that right? Yeah, yes, tell us about Live. Like Bella, I'm excited to talk about calling our host. I already told our listeners a little bit. A highly emotional, fulfilling foundation, and organization.

Nicole De Lara Puente: 1:42

Tell us a little bit of the history and how you got involved.

Nicole De Lara Puente: 1:43

So let me tell you about Bella first, because this is how this all began. So Bella was a little girl like any other little girl, and she was four years old and she was diagnosed with a childhood cancer called rhabdomyosarcoma. She was given just a few weeks, a few months, to live, but the author of life had another plan, because Bella battled cancer for six years and passed away in May of 2013 when she was just 10 years old. In that time, her family I didn't have the privilege of meeting Bella, but her family, who now volunteers for the foundation, has shared so many stories. Her parents and her family asked for prayer. That's really all they wanted. And her story. I followed her story. I would have never dreamt that God would put me here today, but they just asked for prayer. I think they had like a website. It was even like Pray for Bella and the community in South Florida came together. There's always a child in a community, whether you're in Wisconsin, in Alaska, wherever, there's always a child that somebody's praying for. But Bella she was very special and during her battle she was in Houston at MD Anderson. Actually, she had an 18 hour surgery. They really did comb the earth for treatment for her, and her mom posted on Facebook that day. You know Bella just finished her surgery, she's doing well, she's in recovery. Please pray for her and honor her today by doing the things she loves Take a bubble bath, sing a song, say a prayer, show compassion. And she made a list of things that Bella loved to do and at the end of the post she wrote you hashtag live like Bella. So that hashtag was born that day and fast forward a few months later that Bella went to heaven way too soon.

Nicole De Lara Puente: 3:39

The Miami Heat was playing in an NBA conference final. Lebron James and Dwayne Wade were part of the Heat at that time and a lot of people had been praying for her. They had a lot of followers on Twitter, on Instagram, on Facebook, and they asked the Miami Heat to write hashtag LiveLikeBella on their shoes and they did. Lebron James did it first and then the whole team did it and Bella had passed. That morning and that night they were getting calls turn on the TV, turn on the game, turn on the game. And they had just lost their daughter. They were not looking to watch a basketball game and they said turn on the game. And they did and there was a Miami Heat, all with Live Like Bella on their shoes, and it's on that day that her story went viral around the world. The live like bella childhood cancer foundation was born shortly thereafter wow that's a little story.

Heredes: 4:31

I love that I love, I love hearing the one, the power of the story and, even through that pain, you know how god used that and how the influence at the time and the energy of the time was channeled for, and we're looking at what, 10 years now, has it been?

Heredes: 4:45

it'll be 11 in may, 11, 11. So it's been, you know, over a decade and her legacy lives in the power of now. One of the reasons we're talking to you, nicole, is jumping into a lot of the foundations we serve and the organization. One of the things I love the most about your foundation was the listing of some of the children and the kids and you say who we work for and they're kind of on the website and they're front and center with what they're fighting with, what the what the battle is now cancer. It's an, it's an emotional, it's a deeply emotional right to um to battle. Number one what. What motivates you? How did you? You've heard the story. It's more now than just whether a viral marketing campaign or something that caught on, the legacy's, lived on, it's grown into serving and rescuing and partnering and battling with tons more kids. What motivates you? What got you in the game? Why are you here? Why are you passionate about this and talking to me about this today?

Nicole De Lara Puente: 5:44

You know, look my background, my degrees in journalism and public relations. I had worked my entire career in television and in government. I worked for MTV, for Sony Pictures. I had like cool, fun, like when you're at a cocktail party and you tell people you work at MTV. It was like that's so cool.

Heredes: 5:59

So same thing. Right, you just jumped over to the same thing. Well, you know. So here's what happened.

Nicole De Lara Puente: 6:03

So here's what happened.

Nicole De Lara Puente: 6:04

I have two healthy daughters and I've always believed that to those of us who much is given, much is expected. And when my second daughter was born, I was on maternity leave and I had been traveling a lot for work and I wanted to stay home. And I used to do not stay home but I wanted to stay in Miami and I was really involved in the community as a volunteer. But it would have never occurred to me to look at working in a nonprofit as a career. But I can tell you from the bottom of my heart, God tapped me on the shoulder because I really shouldn't be here right now. I just listened I know it sounds a little bit cheesy, but there was a little bit of a calling and I left the corporate world. I was very brave to do, because the corporate world is a lot more lucrative than being a nonprofit. But I followed my heart. I left corporate America to work for a big health system in South Florida on the fundraising side and in pediatrics, just because that was a door that was opened. Fast forward, four years later of a lot of learning. I meet Bella's parents At this point.

Nicole De Lara Puente: 7:08

Bella had passed, but I was one of the ones who followed her story. I would have never known that our paths would cross again and we meet and it really can only be explained by God. So Bella was born and there was low oxygen during her birth so she had a lot of developmental delays. Bella, you know, she passed at 10 and she had never learned how to read. She was very, very innocent that if you talk to her parents in her early years they suffered so much seeing their daughter get made fun of. You know kids aren't always so patient. You know it took her a little longer to understand the rules she would get made fun of. You know kids aren't always so patient. You know it took her a little longer to understand the rules she would get made fun of at parties. And because God does this thing, when she was diagnosed with cancer, you know, a few years later they say it was the greatest gift. Because she never really understood.

Nicole De Lara Puente: 7:57

Bella never asked am I going to die? Is this going to hurt? You know, when Bella was diagnosed with cancer, if she heard somebody else had cancer she'd be like I have cancer too. She was almost. She was so innocent. And her father was raised Catholic and her mother was raised Jewish, but neither one of them was very religious. They didn't have. They had faith, but they weren't necessarily practicing in either of their religions. Their house was not a home filled with a crucifix or saints or the Virgin Mother. And Bella, in her sleep, would wake up and she was talking about mommy church and they didn't know what she was saying and she was like mommy church carries me and her parents. She slept in their room because when she was sick, you know, they had set up her bed and they didn't know what on earth, like what was she talking about? Yeah.

Nicole De Lara Puente: 8:48

And Catholics believe that the Virgin Mother has made appearances on earth, you know, over the years. And there's the Our Lady of Guadalupe, our Lady, you know. I'm sure in Brazil there's a.

Heredes: 8:59

Oh tons, who is it in Brazil? You've got to tell me, nossa Senhora da Aparecida. Who is it in Brazil, nossa Senhora da Aparecida? See, there you go, there you go, yes.

Nicole De Lara Puente: 9:06

So by some process of elimination, they figured out that Bella was referring to the Virgin Mary and she called her Mommy Church, which was kind of crazy because they had never talked to her about that. And by process of elimination, they showed her different depictions of Virgin Mother and there was Our Lady of Lourdes, our Lady of Fatima, and when they showed her a picture of the Our Lady of Guadalupe, she said that's Mommy Church, wow. And they later looked up the feast day of Our Lady of Guadalupe, which is December 12th, and that was Bella's birthday. She was born on December 12th.

Nicole De Lara Puente: 9:47

So there was a family that had faith, but not necessarily practicing, and it changed the way that they lived their lives. When this started to happen, the family saw it as a series of miracles that God was very present in their home and in Bella's heart and in Bella's life. So faith and prayer became a very, very important part of their day-to-day. Because when you have a child with cancer, one of two things can happen you can lose your faith or you can strengthen it. And it's very easy to lose your faith. When you see a child suffering. You ask where is God in this? But when you find your faith, like they did they really. It was able to bring them together as a family, to give them a lot of hope and peace, not free of pain, but full of faith, which is not the same thing, wow.

Heredes: 10:36

What a connection. What a connection there on that One, the specificity of that right and helping challenge their faith. It is right and helping challenge their faith. It is right, miraculous, kind of like God-sized level stuff which sometimes it's hard to comprehend in our rational day-to-day lives, and how it got your attention and grabbed your heart.

Nicole De Lara Puente: 10:56

Well, it grabbed my attention and my heart because I opened my heart, I guess. And while I was working with the healthcare system, we opened a cancer center and Bella's family made a donation to the cancer center. And that's where we met and fast forward. We were all having a cup of coffee one day and we talked about what are we doing for children with cancer in the state of Florida specifically. It was really just a chat, kind of like our chat now. There was no real agenda, we were just talking and long story longer, like they say. You know her family's like look, we've been running this as volunteers in our kitchen counter and it's growing little by little and we don't know what to do.

Nicole De Lara Puente: 11:41

And out of my mouth exit the words. I don't know why. I said we should think about working together. I kind of meant like, let me help out, what can I do? And your father tells me think about it. I've thought about it. You're just saying it out loud and I couldn't tell you H? I don't know what happened that day, but a conversation started and you know, here we are seven years later and I opened my heart to it and I asked them all the time I'm like guys, why did you pick me? And they point to the sky and they're like I didn't. And that was really a Bella moment. And so I took the risk and I followed my heart and everybody told me I was crazy, which I get called crazy often Because you know why would you want to do this? You know, you worked in corporate America, traveled the world, worked for MTV.

Heredes: 12:25

I got the book. If you don't have it, is the book out yet I think, from cocktail parties to cancer, cuban, crazy, I wrote it. I wrote it. It's a CCC, okay, perfect, I figured, I figured, I figured.

Nicole De Lara Puente: 12:36

I figured and I don't know, you know? And people told me like you're crazy, what is so sad? And I said you know what's so sad is doing nothing. I think that's what's very, very sad, and the real death is not the loss of life. The real death is a loss of faith. That's good and I really you know I opened my heart and here we are and live like Bella Today is serving families in 49 states and in 37 countries, something that started in the kitchen counter.

Heredes: 13:05

Wow, that's amazing. And tell me, I want to get into a little bit of leadership and story. We're going to hop back and forth. It's been seven years in this role. Oh, rainbows and skittles, I'm sure it's all been easy. You jumped into millions of dollars and advocacy. Exactly no, yeah, for sure. You jumped into millions of dollars and advocacy. Exactly no.

Heredes: 13:22

Never liked that, right. No, give us a journey a little bit. You don't have to name any names, but if you'd like to, no, but give us the journey. Some leadership transitions, difficulty stepping into a beautiful organization like this, but it's filled with people and challenges and you know how's it been, how's the leadership journey been.

Nicole De Lara Puente: 14:03

So Live Like Bella. I gotta rewind a little bit. Live Like Bella today does three things, or has three lines of service, for lack of a better term. The first one is helping to fund research in childhood cancer. So Live Like Bella, under my leadership, has done advocacy in the state of Florida and around the country, and at the moment the Live Like Bella initiative is funding 66 clinical trials at 10 different institutions in Florida. So, we can talk more about that. That's the nerdy research side of me. My heart is there.

Heredes: 14:34

We have many of those listeners, yes, here.

Nicole De Lara Puente: 14:37

So I'll go back to that. But there's the research component and there's very, very little research that's been done in childhood cancer. Unfortunately, 80% of children who present with cancer are stage four. Children have the physiological disadvantage that they're growing. You know, if you have a four-year-old with a headache, you think they're spending too much time on the iPad. Or you know, if a child has leg pain, you're like man too much soccer practice. You don't think. You know they're not getting screened like us as adults. You know, as a woman, you know you get a mammogram. I have a friend who's a pediatrician that says sometimes being a pediatrician is like being a veterinarian the patient can't tell you what's going on.

Heredes: 15:13

Well, being a parent sometimes feels like that too. Yeah, well, you know. Yes, that too.

Nicole De Lara Puente: 15:22

So there, you know, there just hasn't been funding invested. I think you know you don't want to run a clinical trial with, you know, a bunch of stage four 12-year-olds. Your drugs are not going to get approved, you know. So the very little that there is to offer children are typically adult drugs. And you know you have five children because you're crazy.

Heredes: 15:41

That's another podcast and I'm sure that when they were, little, you don't give an adult Tylenol to a child you want.

Nicole De Lara Puente: 15:46

You know children's Tylenol doesn't exist in the childhood cancer space, so that's very important for us to have a seat at the table.

Heredes: 15:52

So the treatment for kids, at the moment it don't exist, in the sense there's not enough quantity, there's not enough research, or why. So if my child God forbid like, are they just being, are they being experimented on at this case, or how would you you know, I'm not the expert there how does that work? Because, just like there's kids Tylenol now I can now opt for that. Good, bad, I'm not sure. But for treatment is it just still not advanced as it should be?

Nicole De Lara Puente: 16:18

It is absolutely not advanced as it should be. In the last 30 years there have been hundreds of drugs developed for adults, but maybe only two or three for children, and a lot of the adult drugs that you use on children really has very, very scary side effects.

Nicole De Lara Puente: 16:34

You know their organs are still developing, they're still growing and you know a good amount of children who receive treatment experience long-term effects from the medication. But, like I said, there hasn't been drug development there. When you hear the most common cancers that most of us have heard of, it was leukemia lymphoma, but there's rhabdomyosarcoma, dipg, atrt, there's dozens of cancers and there really just have not been development. There's no money in it. If this podcast was about let's open a pharmaceutical company, I promise you, you know, if you're looking to make money and it's not just that right, it's not just pharma.

Heredes: 17:14

We'll be right back after sponsors. Oh yeah, I'm kidding, we're not. Listen, we'll take the sponsor support.

Nicole De Lara Puente: 17:22

But anyway, there just haven't been development. I'm particularly passionate about that. I've heard from researchers around the country that there's never been funds allocated specifically for childhood cancer research. There's families that are researchers that have applied for funds and been denied over and over because they're picking up scraps of funding left over from adult cancers and although the cases of childhood cancer are not as large as they are in adults, there's 43 families every day who hear the words your child has cancer. 43 families, if we heard. You know that's what. Two or three classrooms full of children. If we knew every day that there was 43 children diagnosed with cancer.

Nicole De Lara Puente: 18:04

And if you you know, when you talk about research, sometimes I always tell people let's not just talk about the number of cases, let's talk about the number of years of life lost, and when you have that conversation you look at it a little bit differently.

Heredes: 18:16

And those are those that get diagnosed and know.

Nicole De Lara Puente: 18:18

Well, that's the thing it just takes, you know. Think about it. I don't know when the last time you tried to make a doctor's appointment, but if you have a headache, it's going to be a minute before you go see a neurologist and then, when you're like you know what it should probably get looked at. Kids are not being wheeled into the MRI real quick. They're looking at other things first and kids have the physiological disadvantage. If I introduce you to my 11-year-old today and you see her in in a year, what's the first thing you're going to tell me oh my God, she's gotten what she's gotten so big, so she's growing and the cancer cells are growing rapidly right along with them.

Nicole De Lara Puente: 18:49

And so that's why, by the time you know they're diagnosed, and you wait two months for your appointment with your pediatrician and another month here, in six months the growth of a child is, you know, a lot quicker than in ours. So I say that it's very tragic, but we really are working diligently at the foundation to make sure that we have a seat at the table and are knocking on the right doors to say let's talk about this and what are we going to do. So that's the first line, I would say, of service. Of the three, the second one, which is, I guess, our bread and butter, is when a child is diagnosed with cancer, a family very rapidly finds themselves in a difficult financial situation. If there's two parents in the home, typically one has to stop working. Wow, you can't drop off your daughter at the hospital for chemo, go to the office and come back so very quickly. A family who had no problem buying groceries has a problem buying groceries.

Heredes: 19:36

It changes overnight, yeah.

Nicole De Lara Puente: 19:37

So Live, like Bella, steps in and helps families while their children are being treated at any hospital in the world, helps families while their children are being treated at any hospital in the world to help pay for rents, mortgage utilities, transportation to and from the hospital, etc. It's a very simple process. The foundation works directly with the hospitals and social workers. Because we got to move quickly. It's not you know, these aren't emergency services almost to jump in. So that's where we carry the largest, you know, largest caseload and amount of work that the foundation does is in what we call in-treatment support.

Nicole De Lara Puente: 20:09

And then the third of the three lines of service is we help families that God forbid their child dies. We help take care of the expenses to be able to honor them in their funeral burial headstones. And I can assure you nobody has prepared or budgeted to send the child to heaven. It's very, very expensive and I'll assure you nobody has prepared or budgeted to send the child to heaven. No, it's very, very expensive and I'll tell you, although you may be like man, that's the saddest part of it, I have to tell you may sound weird to say, but it's probably the most privileged part is to be with a family at that moment.

Heredes: 20:39

Really Tell me more. Yeah.

Nicole De Lara Puente: 20:42

You don't know this, but I may get emotional. Oh no, no, really, tell me more.

Heredes: 20:45

Yeah, you don't know this, but I may get emotional. Oh no, no, I'm here. I got five boys that I'm like oh my, you know.

Nicole De Lara Puente: 20:49

look, there's a little boy whose name was Ben. He died on November 11th. I'll never forget Ben. He had a very aggressive brain tumor called DIPG and he battled for 22 months, which, with that type of tumor, there's no recorded survivors and typically children pass in nine months.

Nicole De Lara Puente: 21:09

But I fell in love with Ben, like you fall in love with so many of these kids. And towards the end, his mom. He was in hospice already and his mom asked me to come and see him. And I've been to funerals of children, which I promise you you cannot unsee, but with Ben. I was asked to sit with him in hospice and I remember talking to Bella's father at the time and I said you know, gabby has asked me to come be with Ben. And he goes. Look, I can't tell you to go because, god forbid, ben passes while you're there. I promise you you'll never be the same. And he said but I'll tell you this, if they've asked you to be there, that is the most intimate moment for a family. So I went and there's some level of privilege to be there. That's where your faith gets tested right To be there.

Nicole De Lara Puente: 22:04

That's where your faith gets tested, right, because you're like where's God here and he's ready to receive Ben, and we listened to music and we sat with his brother and I'll never forget that moment and I can tell you there was a privilege to be with somebody at the end of life, to witness that right.

Nicole De Lara Puente: 22:22

To witness that and when you were asking me earlier about, you know what motivates you, why do you do this, and that's what puts a fire in your belly. You know I get a fire in my belly when I see a researcher in a lab, you know, making progress. I get a fire in my belly when I see a family who hasn't been evicted from their home because we were able to help, and I feel a huge responsibility when you say you know what this child shouldn't have passed. We got to do better. You know, and I feel it as a CEO Oftentimes, as you continue to grow, you know you may see these cases like in a quarterly report, not us, and I'll never work that way. I'll never operate that way. You were saying earlier about on our website how it says who do we work for? And I tell my team I'm like you don't work for me and I don't work for the board, we work for these families and whatever decision we make here, you know financially, emotionally, strategically, whatever it is, you got to remember who your boss is and it ain't me. So being on the front lines I think for me has been a huge motivation and staying mission driven A lot of times when you work in, you know in big giant nonprofits you can get a little distant from the mission.

Nicole De Lara Puente: 23:30

You stop necessarily seeing the people you serve. You know because you get into a corporate space, right, you have to run a nonprofit the same way you run a business in order for it to be successful. But when you forget what you're doing and why you're sitting there, I couldn't do it. I couldn't do it. And when I look at you know, growing our team and hiring folks, the number one thing I look for is somebody who's passionate. You know if you need an attorney, you need somebody who knows the law. If you need an accountant, you need to know somebody who knows accounting. But when you're building a foundation that there's so many facets. What I really look for is good people, people who have faith, who have passion, who I can teach you how to put together a marketing plan. We can figure out how to put together a budget, but if you don't care about this, not the right person to be on the team.

Heredes: 24:17

That's gold. We can wrap it up right there, guys, guys and here. But, nicole, thank you for sharing that. You know when, when we got introduced to talk and to meet today and to and to highlight you know, live like bell and your foundation, um, the recommendation was this incredible, uh, incredibly well organized, well run and involved those are kind of the words like. So you have to talk to them that's a good reputation, incredible incredible.

Heredes: 24:43

Usually you get oh cool, or they this, or like a statistic or something that it's important to right. At the end of the day, we're trying to get results and we're trying to improve the research or the advocacy, but when it's like, hey, the reputation is involved, well run, you know and I can tell why. So I appreciate your years of service there and the years to come. Tell me about partnerships. Tell me about some of the things you've done, some of the challenges ahead. I'm assuming corporate partners are important. Health partners are important. What are their roles? What are the foundation's efforts and how can we bridge the gap there?

Nicole De Lara Puente: 25:25

You know anybody who who's worked in a nonprofit can tell you that raising money is is hard, right and keeping your revenue sources diversified.

Nicole De Lara Puente: 25:31

I think is one of the biggest challenges. A lot of times for startup nonprofits you rely a lot on events right, Especially in big cities like Miami. There's a gala every weekend, there's a 5K every weekend, there's a golf tournament, there's a fishing tournament, and while those events are very important for advocacy, you look at your cost to raise a dollar and as a donor, you want to know that you're giving a dollar to an organization and the, you know, largest percentage is really going to the mission. So I think originally, when Live Like Bella began, it was you know a lot of that revenue was coming in from events, which is really not sustainable long term. So fast forward a little after I started.

Heredes: 26:14

Nicole, I want to keep going. Yeah For the person, for the listener, who's running events. They're probably in the middle of planning their next gala right now. Because it's a both-hand, maybe you guys are doing a little bit of both-hand.

Nicole De Lara Puente: 26:24

Oh yeah, no, I love our galas, they're great.

Heredes: 26:26

But tell me, why Give us a tip and a trick here? Why sustainable, long-term scaling growth volume?

Nicole De Lara Puente: 26:36

Well, because the cost to raise a dollar of an event is super high. Right, the best events are events that somebody else does for you and they give you the proceeds of. Right, but our team works incredibly hard. We do. You know two major events throughout the year and they raise great money. They really do. But the manpower that they take, you know, and the percentage that comes to the mission, they're very important to do. But you have to have revenue coming in from other places too. You know so many of us all, no matter what business you're in, learned that in the pandemic. You know events shut down and you look at organizations that were bringing in revenue from other places that you know were able to get through that.

Nicole De Lara Puente: 27:12

We were very blessed really and truly by the grace of God and you know, and Bella, whenever something cool happens, I'll call her mom and be like you want to know what your daughter did today, because it ain't me, we're not that good. You know, so I think again, diversified revenue streams. We receive funding from state and local governments that I really wish I had the bandwidth, because Live Like Bella does assist families in 49 states and 37 countries.

Nicole De Lara Puente: 27:41

But you know we have a team of five and a half because one of the girls on my team she works part time. So you know government funds are great but they're hard to get. They're not recurring dollars all the time, so you have to fight for them on a regular basis and you can't put your eggs in one basket. You know there's grant writing also. But if you don't know about grants, you know you may have to hire a grant writer and finding the right grant writer is hard. You know corporate partnerships are also very important.

Nicole De Lara Puente: 28:09

You know private family foundations that give back individual donors. I think some of the strongest ways to do that and that are, you know, a challenge for us are monthly donors. I think once you engage somebody for a long period of time, you know, and you get them engaged and connected to the organization, that's where your donations can continue to grow. You know is through monthly giving. But you have to steward those donors as well. Sometimes you can't forget about. You know the person who's making a sacrifice to give you $20 a month needs to be treated just as importantly as somebody who gave you $200,000. And it's hard, sometimes right, to keep up, you know. But sometimes the people who have the least give the most. I'm surprised sometimes to cross paths with wealthy people who don't necessarily have philanthropy as part of their DNA. They just don't. And I see families who we've helped over the years that don't have much, that have continued to give. Love that.

Nicole De Lara Puente: 29:01

So I think it's just diversifying where it's coming from keeping your donors engaged so that they feel like they're making a difference.

Heredes: 29:08

How are you guys doing that? Anything that?

Nicole De Lara Puente: 29:28

you've learned since the pandemic? Anything innovative. You know, obviously our teams here work with a lot of organizations, always innovating, trying new things, testing new things, anything you guys have found or discovered or are in the middle of engaging, reactivating and nurturing or segmenting maybe out donor development. Well, look, they're returning the events. Right, because the events are your opportunity to steward your donors, to showcase all of your progress things to them.

Nicole De Lara Puente: 29:38

We actually do an event that we call it our celebration of gratitude. It's the one event that we don't use as a fundraiser. We only do it to say thank you and people are like you're crazy, I told you. People said I was crazy because you really should be fundraising all the time. But I think sometimes it's important to just say thank you. You know I always tell my own kids the only thing I want you to be obviously other than healthy is grateful, because you know who sucks Ungrateful people. There ain't nothing uglier than an ungrateful person. So I really believe in saying thank you. Sometimes for no real good reason we don't do a ton of. We do a good job on social media, on getting the message out, and we send out quarterly newsletters, but you know I have a director of philanthropy and engagement, that she spends a lot of time, and so do I. You know spending time have personalized touch points along the way, which it gets harder as your database gets larger.

Heredes: 30:32

For sure.

Nicole De Lara Puente: 30:32

Right To to just spend time with people to show them you know where their money went and and being very transparent about where it goes. There's a lot of donors that that give money and come back and you're like where did it go? You know we have I call Live Like Bella farm to table right, you know, like you go to a bougie restaurant and they're like oh, these are farm fresh tomatoes that the money comes right in and goes right out. So I think it's important to make sure that the donors see faces, not just statistics.

Nicole De Lara Puente: 31:01

We try to, you know, engage children as often as we possibly can. And it's tricky because in a space like ours you don't want to feel opportunistic, right, because you think of children with cancer and you see commercials of children who have lost their hair, because it is what it is. But we'll share those stories but help us. You know, I think corporate social responsibility marketing is very important but it's lucrative for the corporation as well. Right, my background is in marketing, so I get it.

Nicole De Lara Puente: 31:27

I'll help you, but help me, help you.

Nicole De Lara Puente: 31:31

So those corporate partnerships, I think I don't know.

Nicole De Lara Puente: 31:35

I guess, to answer that question, the question is just keep people engaged, show them the stories, show them the faces and let them know that their money is going to somewhere important Cause this is a I hate to use the word competitive right, but so many of the listeners right now know it's a competitive space to raise money and everything matters. Right, because you think, okay, children with cancer are the most important, but you know children with autism, homelessness, you know hunger, I mean there's so many things that so many people in the world that need our help and as a donor and you're trying to figure out where do I put it so there is competition in that space. You know, I don't like to look at it that way, but I always ask a donor what do you care about? Because if you're sitting down with somebody and their priority is you know, I don't know rescuing animals, I'm not going to sit here and make a pitch for you to make a donation to childhood cancer. I'm going to ask you how can I help you? That's great.

Nicole De Lara Puente: 32:24

Because that's our job here is not to sit in a space and say what's yours, what's mine. We all have a responsibility and if you know, if childhood cancer is not the right space, what do you care about? Let's do it together.

Heredes: 32:39

I love it.

Heredes: 32:40

Nicole, thanks for being frank and open about that, because it's true.

Heredes: 32:41

I think there's a competition for the dollar.

Heredes: 32:42

I think I do think people are willing to those who are not donating or giving. They're spending in somewhere and they're looking for whether it's the ROI in their mind. If the philanthropy doesn't kick in, at least they're like, if I give to this or do something here, if I buy the shirt and the shirt costs whatever a thousand bucks for the shirt it's a transaction to them. But they're looking for that ROI, whether it's to feel good or whether it's the reality of something happening in their lives that now they're looking for an outlet to participate. So I appreciate you talking about that because I think it makes us better, better leaders, better and excellent in what we do and waking up every day and say how do I use the tools, the tips, the latest, and not just sit back and comfortable with something that was handed to us. So I do appreciate that and it's it's what we kind of, even why we do some of this. What we do to help motivate it's like guys, because it's nonprofit doesn't mean that we're going to be an impoverished organization running.

Nicole De Lara Puente: 33:35

No, you don't want to be working to keep the lights on.

Heredes: 33:37

No, absolutely not. It's the excellence of demands. We have to be better leaders and I see that, sense that and know that about you, so I do appreciate that. With that said, I'm going to flip the script on you here real quick Tell us more. I think there are churches and leaders right now looking for whether it's the next fiscal year or coming up for partners like you, looking for places to send their people or to send their dollars. How can they find out more? What's next? What's coming up event-wise we talked about? Forget the gals for now.

Nicole De Lara Puente: 34:13

No, I want to tell you I want you at our gala in September, childhood Cancer Awareness Month. Look, I'm sure you've said this term before. We can all give back in talent, in time or in treasure, and I think all three are as important right? We have a lot of folks who want to come back and give and volunteer. You know especially younger population that may not have the funds they want to give back. You know, with their time and their talent and their treasure and I think you know when you sit down with different church leaders and leaders in the community, some have budgets to give back. You know funds that they want to involve their church communities financially or they want to be. You know a part of spending time with families. We, I think, have gotten to the point, and as much as I can share with you is what I know. I can tell you what I don't know and a part that we're growing in.

Nicole De Lara Puente: 34:58

A lot of smaller organizations don't have the opportunity to do endowments and more. You know those kinds of large gifts that you're stewarding money to prepare for the future of the organization. While I hope and dream to be doing this forever, I want to make sure that the organization that I'm leading is sustainable long after you know we're gone. So you know, for some nonprofits the cash flow is so difficult it's a heavy, you know. Even for us the cash flow when you're paying bills for a family, you know, you can find yourself drinking water out of a fire hose sometimes. So we're at a place where we are building an endowment for the first time, with a long-term vision of the foundation. So I'm learning a lot about that because, again, that wasn't my wheelhouse. Remember I had a cool job at.

Nicole De Lara Puente: 35:43

MTV. It's a super cool job.

Heredes: 35:46

Now the sustainable philanthropy here making it last. I love it.

Nicole De Lara Puente: 35:49

And I think some donors want to talk about the longevity Some people. You know it's hard to talk about research, right? Research is not a fun topic. I love it, I've learned, but I didn't know anything about that. You should see me like touring labs, because we've been to visit the different labs. And somebody will be like, oh, you know, I'm just like looking at the Petri dish, like, oh, it's fascinating. I have no idea what's in the dish. So it's hard to talk to donors about certain topics. I think long-term growth, about where do we go from here? You know, knowing that you're giving to an organization that's going to be around for a long time, you know it's a challenge to choose who you want to partner with. Are these folks going to be there? You know, are we going to take our time and put our heart into something? Do they know what they're doing?

Heredes: 36:37

So I think that's, and let me I'm going to get to the nerdy, geeky part of this real quick. Just get one which should be a reality show to you. You like an MTV reporter in the back of the labs just asking the silliest questions, you know.

Nicole De Lara Puente: 36:49

In COVID I went to go to a lab that the researchers who become dear friends of mine. They're Chinese, have a very thick Chinese accent and they were wearing a mask.

Collin: 36:58

Oh, great and I'm turning the lab and I'm like oh, that's fascinating.

Nicole De Lara Puente: 37:02

And they could have been like oh, our puppy died last week. I'm like that's magnificent.

Heredes: 37:07

No idea what they were saying it was so bad, so, yeah, sorry. So it was so bad, so yeah, sorry. So try me See if I work. Is it a concept or a specific variant of a disease, of a cancer that then gets in the lab? Universities, students, doctors break it down for the I know nothing. All right, I'm going to nerd out on you. Nerd out, let's go. I know nothing, but nobody needs to know.

Nicole De Lara Puente: 37:43

Actually delete the part I said I know nothing I'm faking this.

Collin: 37:46

No, I'm just kidding.

Heredes: 37:46

I'm just kidding.

Nicole De Lara Puente: 37:47

So let me tell you about the research collaboration we've done.

Nicole De Lara Puente: 37:52

When we sat down, I have a dear friend who's a state legislator and when we spoke several years ago she said I wonder what we're doing in Florida for kids with cancer.

Nicole De Lara Puente: 38:01

And she went back and sort of took a look under the hood and was like, well, we're not doing a whole heck of a lot.

Nicole De Lara Puente: 38:05

So we established something called the Live Like Bella Pediatric Cancer Research Initiative. It's a mouthful, live Like Bella Pediatric Cancer Research Initiative. It's a mouthful, but it's a partnership with the Department of Health, and the trials that are being funded has the Live Like Bella name on it, but really the state of Florida is the one who administers how the money goes. It's run by I guess I would call it a board something called the Biomedical Research Advisory Council, the BRAC, of which I was appointed to by Governor Ron DeSantis in 2022, which was a big source of pride, not just for me as a person but for Live Like Bella, to have somebody in the childhood cancer space sitting on a board that had never had anybody in pediatric cancer. So the way that that research works is that any researcher, regardless of whether or not they're part of an NCI center. So an NCI center, for those who don't know, is a National Cancer Institute sort of certified research center.

Heredes: 38:59

Not a government agency, right Well.

Nicole De Lara Puente: 39:01

NCI is a designation that's given to certain cancer centers, that in Florida you have Moffitt Cancer Center in your neighborhood in Tampa, you have the University of Florida and you have the University of Miami. So those are the three big guys who are all amazing healthcare providers who have been, you know, officially branded NCI centers. But if you're a researcher at Florida State, at University of South Florida, at FIU, you've never had access to those kinds of funds. So the Live Like Bella initiative changed that game for folks doing research in cancer. You know there's a researcher, dr Amy Tsang, that she's out of FSU and she's doing research on a very rare brain tumor and Amy told me she goes. I had applied for funding 22 times in other resources and never got a dollar. And now with the Live Like Bella initiative I was finally able to get this study off the ground. So it goes to show you the desperation.

Nicole De Lara Puente: 39:49

You know I had said earlier in the podcast there's not a lot of interest in doing this research. You know it's very discouraging, the numbers are discouraging, but the research, you know, if you're a researcher anywhere, this specific partnership is in the state of Florida, but my vision and dream is to see this happen around the country. But the idea you know to answer your question of what kind of research, all different kinds of research and my goal is to increase that funding. Right now it's $5.3 million, recurring, 3 million of which are run through the Biomedical Research Advisory Council, the BRAC, and the other 2.3 that are split between the NCI centers. But increasing applications for that funding and getting the word out there that it even exists, that's the only way we're going to get more into that fund, because if you're receiving 25 applications and you're funding 23, it's hard to go back and say we need more money. So you know, one of the responsibilities that we have as a foundation, just as individuals, is to increase applications so that we can continue to grow that pool of money.

Heredes: 40:49

And tell me for those and not those myself. Sometimes you imagine folks sitting and just writing papers in a lab quietly, and so there's that aspect of that. There's actual tangible tests and trials and figuring out. And the big taboo question here, this is the one that's like Tell me about the cure, nicole. Is there a cure? And I don't even know how to ask that without sounding ignorant, but because there's so many different types of cancers and stages and is it possible, are we working towards that? Does that motivate people if we're talking? Has there been any glimpse of hope when it comes to curing?

Nicole De Lara Puente: 41:25

And I trust that there will be. You know, I think the idea is to make childhood cancer treatable and curable, right? If you don't want to talk about a cure, let's at least talk about a treatment. Right?

Heredes: 41:37

You have five boys that have two girls and years of life. I love how you talked about that.

Nicole De Lara Puente: 41:41

I mean years of life. You know, when we look at the amount of adults getting cancer, they are tragically and alarmingly high and, comparatively speaking thank God, you know, children with cancer is lower. But if you sit and do the math right, how many years of life lost are we talking here? Um, so will there be a cure, god? I, I pray and hope so, and that's what we're working on. Um, you know, having access to funds and respect for research, and you know what I think is important, um, and one of the reasons why I've spent time in the labs not understanding is because you sit.

Nicole De Lara Puente: 42:15

I've met a lot of researchers over the years because you have some researchers that are also physicians. Not all researchers are physicians and not all physicians are researchers, right? So the researchers that don't see patients I can't tell you how many times I've been in a lab and asked one of the medical students, like, have you ever met a child with cancer? Very rarely does somebody raise their hand and I think it's important to put faces with those cells being examined in the lab. We talked about putting a fire in my belly.

Nicole De Lara Puente: 42:44

I'll tell you how many different researchers that I've met over the years. You know, for example, there's a student at Florida State, chris Hegemeyer, who's one of my favorite guys to work with. He's a graduate student and he's studying the same tumor. I talked about that. Ben had this DIPG. He had never met anybody so he came to our gala see the events come back and I sat him as a researcher in DIPG with a parent who had lost their child. It changed the game for him as a researcher and it changes for a family to see somebody really cares. You know there's a lot of helplessness and hopelessness for families.

Heredes: 43:23

Loneliness.

Nicole De Lara Puente: 43:24

They feel alone, Loneliness and you know when you think, like you know, when you look at the amount of visibility that other cancers get and I say this carefully, right, but you know, think about in the amount of visibility that other cancers get, and I say this carefully, right, but you know, think about in the month of October. You see the pink ribbon, you know breast cancer, which is horrible and the numbers are alarming, but from a visibility standpoint, you have other cancers that have made a lot of noise. If I ask you, tell me the truth. Do you know the color of childhood cancer?

Heredes: 43:46

I do not. I saw your website. You see what's the color of breast cancer. Pink yes.

Nicole De Lara Puente: 43:52

And childhood cancer is gold and you don't know that, and I didn't know that before I got into this space, because you don't see brand campaigns and football teams. It's just not something. Some people don't want to talk about it.

Heredes: 44:06

And what you alluded to earlier, just the big pharma money and just the ROI on some of that, it's just not there.

Nicole De Lara Puente: 44:15

It's just not there. It's just not there. So the motivation is different, right, and that's why I think it's important for us to motivate researchers to see why they're there and listen. The Live Like Bella Pediatric Cancer Research Initiative. It's run by the Department of Health, but we have spent time to make people accountable, right, I need to be able to talk to you perhaps not in detail of where is that money going? It's not my responsibility to administer their funds, but if it's going to have our name on it, I need to be able to know who is doing what. Connect the dots between you know, families and researchers, and actually you want a really cool story.

Heredes: 44:45

Uh-oh, bring it on. Okay, watch this cool story.

Nicole De Lara Puente: 44:48

So as part of my Visit the Lab tour, I can't wait for the Netflix special.

Heredes: 44:53

I mean, I want to see it, the story, is so good, so watch.

Nicole De Lara Puente: 44:56

So 2021, summer of 2021, I'm in Jacksonville visiting the University of Florida Cancer Center and I've done a tour pretending like I know what's going on. And I go back to the lobby at the end of the tour with two physicians there and they said thanks so much for coming to the tour. At this time we were funding I don't know, let's call it 30 trials or something like that. I don't remember the number, but we're talking in the lobby and he says to me he's like thanks so much for coming to visit. He's like you know, what would be cool, nicole, is if we got some of the researchers and put everybody under one roof.

Nicole De Lara Puente: 45:29

And I said perfect, actually, we're having our first annual Live Like Bella pediatric cancer research symposium in September in Miami I think it was July and he's like perfect, we'll be there, awesome. I go, I walk to the car and I call Bella's father, who's our chairman of the board, and I said hey, I just made up a research symposium. He's like what? I'm like we're going to get it done. And I said I'm serious.

Nicole De Lara Puente: 45:56

I went through all of the email addresses that I had for the different recipients of the funds. I called my friend who worked at the Department of Health and I said all right, you think I'm crazy? How many times have we said I'm?

Heredes: 46:08

crazy. I think it's a crazy podcast. We're going to call it the crazy podcast title. Crazy. How many times have we said I'm crazy? No, no, I think it's a crazy podcast.

Nicole De Lara Puente: 46:12

We're going to call it the crazy podcast title and I said let's do this. And at that time people were still doing things virtually and I said, no, I'm out on the virtual. I really believe in human connection and being in the same room together. I was kind of tired of the Zoom gig. So in 2021, we pulled off our first annual research symposium. I'm happy to say that now, in 2024, we will have our fourth.

Nicole De Lara Puente: 46:30

We have the Surgeon General, who has come to speak, the Lieutenant Governor, and we brought people together in this Research Symposium. I'll tell you what made it different and of all the events that we host, right Gallo's beautiful 5K. This is a space that is sort of a magical place to be because we open the door to families and very rarely do families have access to a research symposium. Researchers talk to researchers, and opening that door has made it one of the only in the country to do that and it's been a game changer. The perspective, the topics that are spoken about at the research symposium some are very deep and scientific and other ones get a little lighter, talking about family impact, and it's a beautiful space. And, if I can tell you a cool story, in 2022, we had during the lunch break, a scientist out of FIU. She was doing a study or is doing a study. That's actually simple. This one I can explain. I understood the other one, she did good.

Heredes: 47:33

No, no, this one did good.

Nicole De Lara Puente: 47:35

So she takes a tissue sample from a relapsed patient. They take it to the lab at FIU and they put it in a fancy machine and they put FDA-approved drugs and test it against the tissue Anything from Claritin to a prostate cancer drug, things that you wouldn't give to a child. They mix it up, you know drug A plus B plus Q, and they say, man, it had a reaction. The great thing is, at that point the physician can go back and prescribe that medication and you don't know what combination of drugs.

Nicole De Lara Puente: 48:06

I mean it's basic science, but it really like if you look at the research that is being published as we speak and lives are being saved now, right when we spoke earlier. Research is tricky to talk about. So we're at the symposium, dr Diana Azam, she's on the stage, she's talked about the research and during the lunch break there's posters Picture like I don't know, one of your boys has had a science fair. I know you homeschool them, but I'm sure we have science fair projects.

Heredes: 48:32

The homeschool part is crazier than the number of kids you have, but anyway.

Nicole De Lara Puente: 48:36

So a picture of a science fair. Dr Azam has shared her research and she's standing by her poster during the lunch break and there's families walking around and doctors and stuff and a mom whose name is Diana. Actually her son, logan, had relapsed and he was in a clinical trial, but the researchers won't ever meet the patients because that's all confidential information. So Logan's mom is standing in front of the poster and she says to Dr Azam my son Logan is patient number 13 in this trial and we were in hospice and he's home and he's fine.

Nicole De Lara Puente: 49:10

And it was one of these moments that you saw these two, you know these two people embrace that this researcher conducting work that was funded by the Live Like Bella Childhood Cancer Foundation that has saved the life of a child. And then we go back people say, nicole, this is so sad. I'm like you know what I've been to more graduations and funerals, and that's what this is about. Right Is, how do we ensure that children are being helped, whether it be financially, their lives are being saved, that they have access to research? And it was a very beautiful human moment, right? My crazy idea in the lobby of putting together a research symposium. These families would have never met. So I get sentimental about the human connection. Here the science meets the human connection. For me, it's beautiful.

Heredes: 49:55

I love how you've done that. It's the science or the source of pain, but then the heart meeting that it just gives you know a name for the research. When that researcher is there, it's no longer a number or a you know a tissue, it's now, it's like man there's a real life at the end of this and this coming together.

Nicole De Lara Puente: 50:16

So I was at Logan's bell ringing and he was dancing at Bella's Ball and I saw the dean of the College of Public Health and I nudged him. His name is Tomas. I said, tomas, that happened in your lab. Look at this kid dancing, you know, and I was very proud, very proud of us taking the lead on that, and you know.

Heredes: 50:27

Nicole, listen, thank a CEO of a multi-million dollar organization doing so much good, for you to be living up to your reputation here, living like Bella number one. So I give mad props. But the stories you shared today, the names, knowing and being involved, I commend you. Keep it up, I love it. It makes me want to be a part. Jump in, Figure out, let's do it. So thank you for doing that. I'm sure those who work with you feel the same and tell us before we wrap up here and thank you for your time. Where can people find you guys? How can they be a part? We already talked about the galas several times and how crazy you are.

Collin: 50:58

So no more of that.

Nicole De Lara Puente: 50:59

How can they find you?

Heredes: 51:00

What's a call to action, now that they can be a part of, or jump in or find out more?

Nicole De Lara Puente: 51:04

You know we go back to Talent, time and Treasure, I think, to learn more about Live Like Bella sort of the basics you have. You know our website is livelikebellaorg and on social media, all of the handles are Live Like Bella on LinkedIn, on Facebook, on Instagram, on Twitter. But I'm going to do the last crazy thing, right, I'm going to give you and the listener is my cell phone number.

Nicole De Lara Puente: 51:23

Let's go and call me, text me and say this is what I want to do to help, or I want to find out more and can personally reach out to me and we'll figure it out. You got to be careful because anybody's like how can I help? So it's 786-223-4444. So you now have the official CEO phone number and let's talk. I mean, you know, just, you got to watch, because when you offer to help, I'll take you up on it, even you having me on this podcast.

Nicole De Lara Puente: 51:51

You have helped. You know you have helped. You're helping to share this message of faith and hope and love, and that's the role that you played today. You're welcome to help me raise money Absolutely, but I think that we all come together and I'll figure out something for you to do. My daughter's art teacher, mr Gomez. He made the mistake of saying how can I help and he painted this beautiful mural in our office that was donated to us. We have a little office that was donated to us right in the middle of Coral Gables it's a business district in Miami and he painted a beautiful mural. From doing that to raising money to you know.

Heredes: 52:25

If you've got the talent, we're going to find you a treasure. I will find it.

Nicole De Lara Puente: 52:27

I will track you down. So, if you reach out, be ready, because we need your help and these families count on us and they're who we work for and why we do this and we owe them. You know these kids are, you know they're our future, they are our legacy and if we don't help them, who will?

Heredes: 52:49

I love that, nicole, thank you, your reputation precedes you, thanks for being with us today and I hope a bunch of people call you. I really do Text her. She texts back really fast too. I'm going to text her.

Nicole De Lara Puente: 52:58

I'm going to text her oh my email here we'll do my email and everything. Let's get it, it's real. It's Excuse for not reaching out to me Anything else?

Heredes: 53:09

WhatsApp, no, no, thank you, nicole, I appreciate it. Thank you, ace. I really appreciate it. Thanks for being on our podcast today.

Outro: 53:17

Thanks again for listening to the Nonprofit Renaissance. We hope it ignites a renaissance in you and helps you go further and grow faster. Be sure to share, rate and subscribe, and if you'd like to recommend or be a guest on our show, send us an email at podcastatversecreativecom.