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Welcome to the Community Foundation of Tampa Bay’s Inspired Giving podcast, where we spend time with innovators and change-makers in the world of non-profits and social enterprise in Tampa Bay. Since 1990, the Community Foundation of Tampa Bay has been inspiring creative philanthropy and leadership in the Tampa Bay region by working with donors, non-profit organization, and community leaders to build a more vibrant community.

07/05/2018 | Episode 003 | 31:04

Inspired Giving Podcast: Kyle Matthews, Executive Director of Beat Nb

Kyle Matthews talks the tragedy that led to Beat Nb, impact, and the power of nonprofit collaboration

Welcome to the Inspired Giving podcast. In this third episode, your Community Foundation of Tampa Bay host Wilma Norton welcomes Kyle Matthews, Executive Director of Beat Nb, a nonprofit that seeks to do just what it says - beat neuroblastoma - the most common cancer in infants. Matthews joined Beat Nb full time in 2016, six years after the death of his son Ezra from neuroblastoma. Matthews, an entrepreneur with a budding tech company left it all to work for something larger. Matthews' strategic leadership brought together four organizations formed by the grieving parents of children who fought neuroblastoma, pooled their resources, and created Beat Nb. Since its inception, Beat Nb has helped found and fund a global research consortium called Beat Childhood Cancer.

Key Insights

  • Today's Guest: Kyle Matthews, Executive Director of Beat Nb.
  • What is the Beat Nb? "Beat Nb is a non-profit which drives childhood cancer research. We specifically focus on neuroblastoma and we specifically focus on clinical trials which can affect a kid today or within six months. So we’re working to beat at least neuroblastoma and perhaps other childhood cancers."
  • When Matthew's first son Ezra, was diagnosed with neuroblastoma and after 13 months of treatment he passed away in 2010 at the age of two. Matthew and his wife started "Because of Ezra", a non-profit that would grow into what BeatNB is today.
  • Beat Nb was established in 2010 by Patrick Lacey, Will’s dad. Shortly after, in 2011, Kyle and Robyn Matthews (Ezra’s mom and dad) founded Because of Ezra, with a shared mission. In June of 2016, Pat and Kyle merged the two organizations, forming a brand new Beat Nb.
  • Neuroblastoma counts for 5% of 15,000 cases of childhood cancer in the U.S., and pharmaceutical companies don't develop a drug because they won't receive money back for that amount of patients, says Matthew.
  • A mission: "A majority of childhood cancer research is funded by parent groups like ourselves. There’s not a lot of federal dollars that go to it. When we started we were very sure that clinical trials and research is how we wanted to come at this problem, how we wanted to fight this injustice and we looked around and went to a lot of different research places."
  • What gets Kyle Matthews up in the morning? "The fact that we are beating cancer. I know so many kids who are alive today who, when Ezra was diagnosed, would not have been. I spend time with their families, Robing and I have dinner, we share laughs, tears, a bottle of wine with these people and I get to see these kids who eight years ago would not have beat cancer, and know that in part because of what we are helping to make happen they are beating cancer."
  • Advice for Philanthropists: "I think for philanthropists my biggest advice would be, look at the impact that a non-profit is having. I think historically non-profits have been judged on one single metric, which is what percent of the dollar goes directly to the mission or program, or the thing you’re trying to do. And so – caveat, ours is good. At least 80 cents of every dollar goes directly, which is considered high compared to what a lot of groups do. But I think that we hamstring non-profits when that’s the only thing that you look at. t’s judge by the impact, spend an extra five minutes and look beyond just the one metric to see what is it that these people are doing? Is it novel, is it working, is it impactful? And then make your decisions."
  • Advice for Non-profits: "I think a non-profit should constantly be looking at the way that you are attacking things, the way that you are addressing the injustice that you exist to address. And don’t get caught up in comfort. I think it’s very easy with any longevity to just be comfortable and say, 'Well, this is how we’ve done things,' and I think it’s obvious to anyone that sometimes things need to change, and so to be able to look at in and say, judge yourself on impact too."
  • On supporting families: Matthew advices families interested in Non-profit management to define their goals and purposes. He calls it laser-focusing, which he says "will make you much better at what you’re trying to do, and much more likely to achieve that."
  • On the importance of partnership: "Look around and see who else is passionate about what you’re doing and if there’s a way that you can partner with them. Often times there is someone doing what you want to or there’s someone who is doing it in a way that’s very close to the way that you want to, and so I think it’s important to go and talk to those people and say, 'I’d like to partner with you, I’d like to come alongside you and help do what you’re doing,' or, 'I even have some new ideas, what do you think about this?'"
  • For Matthew, Beat Nb has achieved a purpose thanks to the drive of its small and passionate team of philanthropists, doctors, researchers, advocates and parents.
  • Reaching out to the community: "If anyone listening ever has some questions about anything that we have done that could perhaps help them, you could find us, we’re on the internet, we’re on beatnb.org, we’re on Facebook."

"We were all doing the same exact thing, we were funding the same research, we had the same missions, we had the same mindsets on how we wanted to achieve those missions, we were just doing that under different names and different 501(c)(3)s."

Kyle Matthews (center) received a $100,000 grant from Florida Blue in December 2017, as part of Beat Nb’s #GivingTuesday initiative.

 

 

"I think that if you see something that’s wrong, please stand up and do something about it."

 

Table of Contents

(0:00 – 1:02) Introduction

(1:02 – 1:29) About Beat Nb

(1:29 – 7:17) Beat Nb as a Life Mission

(7:17 – 10:47) Giselle Sholler

(10:47 – 12:43) Lessons Learned

(12:43 – 15:16) Dealing with Injustice

(15:16 – 17:43) What Gets You Up in the Morning?

(17:43 – 18:19) Goal for the Future

(18:19 – 19:36) What Keeps You Awake at Night?

(19:36 – 22:56) Advice for Philanthropists and Non-profits

(22:56 – 26:17) Supporting Families

(26:17 – 27:55) Overall Perspective

(27:55 – 31:04) Conclusion

Full Transcript:

Wilma: Welcome to the Community Foundation of Tampa Bay’s “Inspired Giving” podcast, where we spend time with innovators and change-makers in the world of non-profits and social enterprise in Tampa Bay. Since 1990 the Community Foundation of Tampa Bay has been inspiring creative philanthropy and leadership in the Tampa Bay region by working with donors, non-profit organizations and community leaders to build a more vibrant community. I’m your host, Wilma Norton, vice-president of Marketing and Communications for the Community Foundation of Tampa Bay. Welcome to another edition of the Inspired Giving podcast from the Community Foundation of Tampa Bay. I’m Wilma Norton, vice-president of Marketing and Communications and with me today is Kyle Matthews, who is the executive director of Beat Nb, which stands for neuroblastoma. Kyle, thanks for being with us.

Kyle: Hey, good morning. Good to be on here this morning.

Wilma: So Kyle, can you tell us a little bit about what Beat Nb is and how it came to be?

Kyle: Sure. Beat Nb is a non-profit which drives childhood cancer research. We specifically focus on neuroblastoma and we specifically focus on clinical trials which can affect a kid today or within six months. So we’re working to beat at least neuroblastoma and perhaps other childhood cancers.

Wilma: Well, tell me, can you talk a little bit about how this came to be your mission in life? I know you were a start-up entrepreneur, you worked in the Tech and IT industry… how did you come to this work?

Kyle: So in 2009 my wife and I’s first son, Ezra, was diagnosed with neuroblastoma and he went through 13 months of treatment and actually died in 2010 at exactly 800 days old, so just over two years old. And at that moment, obviously that was the hardest thing that we had ever been through and we knew we had to do something and we started what at that time was called “Because of Ezra” and we have since merged with a few other non-profits to become what Beat Nb is today.

Wilma: And I wanted you to talk a little bit about that because I know a lot of people, when they have this sort of thing happen to them, their inclination is, “I’m going to form a non-profit, I’m going to do something about this.” And you did that, but you looked around and said, “There’s a bigger picture.” So if you could talk a little bit about how you came to this…

Kyle: Sure. So like you mentioned, I had a technology company. I was an entrepreneur and I was just minding my own business working on life, and then when everything happened with Ezra we really felt like we had to do something, so we started this non-profit. And it grew over the years to where it was really having an impact, enough to where Robin, my wife, and I had a discussion and really said, “I think this is where I should be full time, I think that I should be doing this full time.” And so when I went full time in January of 2016 the first thing that I did was call three other non-profits who had been led by other parents like myself of neuroblastoma kids. We were all doing the same exact thing, we were funding the same research, we had the same missions, we had the same mindsets on how we wanted to achieve those missions, we were just doing that under different names and different 501(c)(3)s.

Wilma: And around the country, right?

Kyle: Correct, yeah. San Diego, Buffalo, Boston and Tampa. And so I said, “Look, I think we should really do this all as a single group if we’re going to have that impact we want to have. Let’s pool our resources and be one group.” And I was surprised everyone said, “That’s a great idea, let’s do it.” And so in June of 2016, so about six months after I had gone full time with “Because of Ezra” the three of us who had our children’s name in our non-profits let go of those names and we all became Beat Nb, so we all became a single group. And since then we’ve had several other families around the country that have joined alongside us and are helping us to grow in all sorts of different areas.

Wilma: That had to have been a difficult decision to give up Ezra’s name on the non-profit. But it also makes it a lot easier to integrate other families into this mission as time goes on, correct?

Kyle: Yeah, definitely. So the other groups were “Max’s Ring of Fire” – and Max is a crazy story. He actually died of neuroblastoma, I think it was less than ten minutes before my son was born.

Wilma: Wow!

Kyle: So a very, very weird story there. “Max’s Ring of Fire” was that group in San Diego. “Melina’s White Light” obviously, for the Riniolo’s daughter, Melina, was in Buffalo. Beat Nb was the original group in Boston’s name and then because of Ezra was what Robin and I had formed here in Tampa. So yeah, there’s a sting involved in letting go of your child’s name because we all did get into it for those specific stories for our own kids. But the reality is none of this will help Ezra now. He’s gone, he died. And so it’s now because of so many other kids and so I think as we took on the Beat Nb name, like you said, it really allowed other families to come alongside us and say, “Well, I’m doing this because of Harlow,” or, “I’m doing this because of Sophia,” or, “because of Rhea.” And this is what we’re trying to do, beat neuroblastoma. So it makes it, yeah, easier for people to align with us and join hands.

Wilma: And neuroblastoma primarily affects children, correct?

Kyle: Yeah, the vast majority are two years or under.

Wilma: And is considered rare?

Kyle: All childhood cancer is actually considered rare, so there are 15,000 cases a year in the U.S. and that’s over a dozen types of childhood cancer. The incidences of neuroblastoma specifically is about 750 cases a year. But it’s one of the cancers where we’re losing our kids, so the majority of them are leukemia and we’ve done a pretty good job – not Beat Nb, but the world has done a pretty good job with leukemia. It’s something that in the ‘50s had a dismally low survival rate and now is in the 90% tiles and above. So we’ve done really well with that, but there’s still a lot of childhood cancers where we’re losing our kids and neuroblastoma is one of those big ones. And so a lot of parents say it’s rare until it happens to you, because I’ve been surrounded by those parents constantly. So it’s technically rare in that a drug company is not gonna make any money forming a drug for this type of cancer because they’ll never make their money back with this amount of patients, but it is something that is affecting a lot of kids.

Wilma: So the research has to be privately funded.

Kyle: A majority of childhood cancer research is funded by parent groups like ourselves. There’s not a lot of federal dollars that go to it and there are not a lot of private or farmer dollars, I guess corporate dollars, that are going to it – it’s almost all parent-funded and parent-led groups.

Wilma: So it is a very mission-based goal. Now you had told me that you found a researcher who was interested in this and rallied around that one researcher. Can you talk a little bit about how that went?

Kyle: Sure. When we started we were very sure that clinical trials and research is how we wanted to come at this problem, how we wanted to fight this injustice and we looked around and went to a lot of different research places, tried to take stock of what’s happening now, who’s doing this work now. We didn’t find research that we felt was bold enough or patient effective enough to really be what was going to beat neuroblastoma soon for the kids who are diagnosed now and in the very near future. We found an incredible researcher who had some novel ideas out of University of Vermont at the time, doctor Giselle Sholler is her name; and she said, “I have some ideas, I have some things, actually my friend Pat,” who was the founder of Beat Nb out in Boston. His son had been sent home, his son Will had been sent home in Boston from the hospital and told, “We don’t have any options for your son, you should go home and make some memories.” Obviously, for any parent they say there’s got to be something else, what can we do? And he called around and Dr. Sholler was the first one who said, “Look, historically it’s true that there’s no options for a kid in Will’s place right now, but somebody’s gotta be the first, so let’s try something.” And so we started funding her work and the long story short, what started as one clinical trial with three kids at one hospital has grown to what is now an international research consortium. The clinical trials in research is happening in 45 institutions across the country, across the world really. We just opened five in Canada and we’ve helped to launch 19 different clinical trials, three had over 1,000 kids directly and the indirect impact there is much more kids.

Wilma: Wow. That’s pretty incredible, and a fairly short amount of time.

Kyle: All of that has happened in eight years, and actually there’s a pretty incredible story that the Boston Globe wrote if anyone listening wants to take a deeper dive, it’s just at globe.com/will, really talks about Pat Lacy and his son Will and centers around Will’s story and tells what we’ve built, but around Will’s story. At one point in there, there was a drug company that was formed because we were about to lose access to the drugs. There’s a lot of really interesting things that go on in there, but the Globe has a really great deep dive on that.

Wilma: Well, how did you, once you decided, “We’re gonna do something,” how did you figure out, “Oh, we need to form a non-profit and I’m gonna run it”? You’re a pretty high energy guy, but how did you go about that?

Kyle: Well, I think a lot of it has been driven by what needs to happen. There’s been some big things that we’ve done helping to form this research consortium and ensuring, working with someone to make sure that these drug companies started. All of it has been, “What needs to happen in order for these kids to beat cancer?” And starting the nonprofit really was because Dr. Scholler’s work needed to be funded. And so we said, “Alright, we’ve gotta go get that money, we’ve got to ensure this gets funded, the way to do that is to start a non-profit.” And from there it just became, what’s the next step? What are the things that have to happen for kids to have access to these treatments and for them to be driven forward? And that was the thing to do.

Wilma: For the people listening who might be either running a non-profit or involved in a non-profit, or a philanthropist, what are the lessons you think are widely applicable for non-profits from what you’ve learned, both from “Because of Ezra” and now with Beat Nb?

Kyle: I think the important thing to know is that you can make great change, you can make these things happen and often times you should. Never underestimate the power of a small group of passionate people. I have been amazed at how when we parents and advocates and researchers who are working with us and working alongside us put our hands up and say, “Hey, this is not right. What is happening is not right and it can’t be this way.” What we’ve been able to accomplish through that… I always hear, “Well, it’s not rocket science,” or, “It’s not curing cancer,” like this kind of giant, impossible things – and none of us parents had any medical background, none of us had any non-profit background, fundraising background… but we saw an injustice, we saw something that was not right and said, “This has to change and as far as we can tell there’s nothing else that’s going on to change it, so let’s just be the one.” I don’t think this is what we really wanted to, it’s an emotionally draining job, it’s a hard thing to do to constantly be surrounded by people who are in the hardest part of their life, and to be watching these kids get diagnosed with cancer often beat it, often not beat it. That’s a difficult thing to do. But as we have all gone through and said, “We must do this because this thing that is wrong must change,” I’ve been amazed at how many people come alongside and say, “Hey, I can help. Have you talked to so and so?” Or, “I have some money.” Or, “I have a connection.” Or, “I have…” whatever it is, “Here’s what’s in my hands, can this make a difference?” And when we say, “Yeah, it can…”

Wilma: Well – and you used the word ‘injustice’. Talk a little bit about that. That’s a specific term I think you’ve intentionally used.

Kyle: Yeah, I do. I think that any non-profit when you formed it’s usually around something you see that is wrong and you are trying to right that. Whether that would be cancer is affecting kids and we don’t have a way to beat it, that is something that is wrong, that is an injustice that we can do something about. Or whether it would be as simple as kittens don’t have a home, or as complicated as racial issues or whatever it may be, you see something that is wrong and generally that non-profit is formed to say, “I’m going to fix this thing,” or, “I’m going to fight this thing,” or, “I’m going to work to make it better.”

Wilma: So, with Beat Nb you have a very specific mission. You have said there are other groups out there that were doing the “Make a wish”, the helping families with plane tickets and those kinds of things.

Kyle: Sure.

Wilma: You decided, “We are going to fund research and we are going to make this very specific thing happen.” Is that advice that you think every non-profit needs to look at?

Kyle: Yes, this is the first thing that I tell anyone who is interested in jumping into the non-profit world, is decide how you’re going to address whatever injustice you are addressing. We were very specific that clinical trials and research is what we wanted to do. Like you mentioned, we had benefited from a lot of groups who do a quality of life side of childhood cancer, which is introduce you to celebrities, or send you to Disney world, like the “Make a wish” style groups. And I think there are groups who do that really well and that thing is taken care of as far as we were concerned. It’s an important part of that. None of those added an hour to my son’s life and that was the driving decision maker for us on how we wanted to come at childhood cancer. Our name is our mission, beat neuroblastoma, that’s what we’re here to do. We’re here to make it so that no other family has to carry the intimacy with tragedy, the loss that Robin and I have, at least from neuroblastoma. There’s a lot other ways that that can still happen to people and I know you’ve lost a daughter as well, and so we’re looking at… everyone is looking at those different things, but our mindset was, if we can stop this from happening for neuroblastoma that’s worth it.

Wilma: Well, and I think, as you mentioned, those of us who are all members of this club that none of us wants to be in, the natural thing is to look for the way to make something positive happen out of this. And you and Robin have done that as well as anyone I know. What gets you up in the morning? What gets you going, what makes this the thing that keeps Kyle Matthews running beside coffee?

Kyle: [laughing] The fact that we are beating cancer. I know so many kids who are alive today who, when Ezra was diagnosed, would not have been. I spend time with their families, Robing and I have dinner, we share laughs, tears, a bottle of wine with these people and I get to see these kids who eight years ago would not have beat cancer, and know that in part because of what we are helping to make happen they are beating cancer. They are alive, they are here, and they can grow up and make dumb decisions or become rebellious teenagers, or go cure some other disease, they could do whatever they want, they can have their childhood, they can have their life because of the research that we’re helping to drive. And we have an incredible team that is making that happen.

Wilma: Now, when Ezra was diagnosed what was the survival rate?

Kyle: It was around 60% was the overall survival rate. And one of the biggest problems was we could get most kids, 85-90% to remission, but over half those kids relapsed and there were single-digit survival rates for relapse at the time – that’s what happened to Ezra.

Wilma: What’s the survival rate now?

Kyle: So, for kids who are on our trials we’re seeing closer to an 85 or 90% survival rate. There’s a lot of work left to be done, not every kid gets to get on those clinical trials, not every family even finds out about them because they’re not at every hospital. And so the thing to do is really publish the papers, prove out, yes, this is working, and this is why, and then make that standard of care. So that means when you walk into any hospital the doctor says, “Oh, neuroblastoma? This is how we treat it, and this is what the survival rates are because of this treatment.” So there’s a long road to get there but those kids on our clinical trials are seeing those huge jumps in what it was now. And specifically for relapse, it’s closer to 30 to 40% now instead of the single digits that it was when Ezra was diagnosed.

Wilma: And so the goal for Beat Nb for the future?

Kyle: Our goal is by 2027 to have neuroblastoma over and a 90% survival rate.

Wilma: Overall?

Kyle: Overall, yeah. Not just on our clinical trials but at any hospital that’s just, when you walk in they tell you it’s about a 90-something percent survival rate. I think we may even be able to do it faster than that, obviously, that would be my hope and I spend time with so many of the families that I know what it means if we don’t get there. So there’s a constant urgency to what it is that we do, but that’s our goal.

Wilma: Well, and the question that follows what gets you up in the morning, is obviously – what keeps you awake at night?

Kyle: Yeah, and that is the flipside of that same coin, which is that we are not fast enough. We are one of the fastest groups and I think the way that we approach research and clinical trials has been something that can teach the clinical trial world how to do things, that this parent-funded and really deep interaction between the researchers and the parents and the advocates, we’ve been able to jump over hurdles that other groups aren’t. So we do it fast but even within that it’s not fast enough, and obviously, 85 or 90% sounds great, but that means one out of ten kids is dying. Because of the nature, the way that we do things, because of how much we follow these kids and how much we try to spend time with the families, a lot of those are people that I know personally or whose Facebook pages I’ve been following, and so I feel connected to them. And to see us lose those kids just breaks my heart constantly. Not only does it remind me of our own story with Ezra and losing him, but obviously just to know that now they know this, and they understand that same feeling, it’s crushing.

Wilma: What do you wish people knew about this whole non-profit industry? You were an entrepreneur, you told me you went out and bought “Non-profits for dummies” when you got started on this.

Kyle: I did, yeah [laughing]. Yeah.

Wilma: [laughing] How did you learn to do this and what can you convey from your learning process in this that can help be advice for either philanthropists and donors and for non-profits themselves?

Kyle: I think those are two different questions. I think for philanthropists my biggest advice would be, look at the impact that a non-profit is having. I think historically non-profits have been judged on one single metric, which is what percent of the dollar goes directly to the mission or program, or the thing you’re trying to do. And so – caveat, ours is good. At least 80 cents of every dollar goes directly, which is considered high compared to what a lot of groups do. But I think that we hamstring non-profits when that’s the only thing that you look at, because – consider an example, there’s a lot of these Facebook pages I follow of other childhood cancer non-profits and they’ll say, “100% of every dollar goes directly to mission.” And then you pull out their 990s, their tax reports and see – well, they raised $10,000 last year, so…

Wilma: Because they’re a volunteer-run organization…

Kyle: Exactly, because it’s very hard to do these giant things when you have no one who is actually being paid full time to work on that. And so is 100% of 10,000 better than 70% of 10 million? Because on the one hand, 100% went but only $10,000 went to the cause. On the other hand, only 70% went but it was seven million dollars. And so you look at the amount of impact that that group is having, and you say, “Okay, obviously this one makes way more sense.” Or even if it’s a high percentage, still, but you look at the two groups and see, “This one really looks like it’s actually having impact.” I think that’s the main thing with philanthropists, it’s judged by the impact, spend an extra five minutes and look beyond just the one metric to see what is it that these people are doing? Is it novel, is it working, is it impactful? And then make your decisions.

Wilma: And for non-profits, you just said the word ‘novel’ and ‘impactful’. I think you have some ideas about taking risks and evaluating and being nimble.

Kyle: I do, yeah. I think that that’s important. I think a non-profit should constantly be looking at the way that you are attacking things, the way that you are addressing the injustice that you exist to address. And don’t get caught up in comfort. I think it’s very easy with any longevity to just be comfortable and say, “Well, this is how we’ve done things,” and I think it’s obvious to anyone that sometimes things need to change, and so to be able to look at it and say, judge yourself on impact too. Are we having the impact that we want to have? Can we have a better impact? And if we’re not having the impact we want to have, why is that? Is there something we can do better? Can we talk to other people who we respect in this industry or in this, dressing the same sort of thing and say, “Hey, what are you doing different? Because we think we can achieve more,” or that kind of thing. I think being bold about the way that you address things will see significant change.

Wilma: What piece of advice do you give to people if someone calls you – and I know people do – and either say, “I’ve had this personal tragedy,” or, “I’ve had this epiphany, this inspiration and I want to do something about this injustice”? The first inclination for a lot of people is, “I’m gonna form my own non-profit.” What do you tell them?

Kyle: So I have three pieces of advice with that. The first thing that I say is, you can do it and maybe even you should do it. That is always the first thing I say, is it is possible and sometimes you do need to be the one to do it. The second thing that I say is, be very clear and defined about what it is that you want to do and the way that you’re going to do it. I see so many people that literally name a cause and say that’s what their non-profit is going to be. “Okay, what’s your non-profit?” “It’s gonna be childhood cancer.” Well, that’s a wrong, that’s not a thing. Or it’s gonna be homelessness. So are you going to be homeless? I mean, that’s not a thing. What are you going to do specifically? Are you saying, “I’m going to start shelters that have a different method of helping homelessness, or are you going to say we specifically do clinical trials? And even within that, we specifically do ones that can open within six months or less?” How are you going to define that the way that you affect things? And I think that that will really help you to not wind up with this kind of bumbling thing that I see a lot of people do where they try to do everything possible to help one group. Within childhood cancer you do the “Make a Wish” thing, you do – we help families with their bills, we fund research, we have helped people get on planes to different places – and you wind up doing a ton of different things in a mediocre way instead of laser-focusing on a one thing and then when those other needs come up, because they’re real, just having a good partner that you hand those off to. I think that laser focus will make you much better at what you’re trying to do, and much more likely to achieve that. And then the third thing that I tell people and the final thing is look around and see who else is passionate about what you’re doing and if there’s a way that you can partner with them. It’s not always the best idea to start your own non-profit, and you could take this with a grain of salt because I’m a person who started my own non-profit, so obviously I didn’t follow this advice of joining someone else, but we really didn’t feel like there was anyone doing what it was that we wanted to. Often times there is someone doing what you want to or there’s someone who is doing it in a way that’s very close to the way that you want to, and so I think it’s important to go and talk to those people and say, “I’d like to partner with you, I’d like to come alongside you and help do what you’re doing,” or, “I even have some new ideas, what do you think about this?” And gage that receptiveness and see, does it make more sense to partner there? Because there’s a lot that you can gain from having a decade of reputation and infrastructure and having all that background knowledge rather than spending the first couple of years trying to figure out how to run a non-profit.

Wilma: Well, actually I think that advice from you is maybe more highly reliable and credible because you started your own non-profit and then you looked around and said, “Oh, wait. Maybe we should’ve joined with somebody who was already doing this,” and brought them together. So…

Kyle: Yeah. It’s exactly what we did. And we gave up our son’s name in our non-profit, that’s what we did.

Wilma: So ten years ago, if someone had said to you, “You’re gonna be running this non-profit that’s taking on this seemingly impossible task,” what would you have said?

Kyle: Okay [laughing].

Wilma: [laughing]

Kyle: I would’ve been surprised that that was where I was going, I’ve always been an entrepreneur and I’ve started my own companies, and some did well, and some did not and that was really I think my mindset. I love technology and music, and everything has always been around those two things, but sometimes something happens to you and you are driven by that, and I’ve been amazed by what we’ve been able to accomplish, I wouldn’t trade where I am now. I would take back the cancer part if I could get that part, but…

Wilma: I was going to say.

Kyle: But I would definitely would take that back. But the impact that we’re having and the stories that we’re a part of are pretty incredible.

Wilma: So where do you see yourself in ten years? This has been such a huge part of your life now for almost ten years, both Ezra’s diagnosis and then running this. I think your goal is that Beat Nb will have fulfilled its purpose in ten years. What do you do then?

Kyle: I have no idea. I have no idea. I think you’re right, I think any non-profit’s goal is really to work themselves out of a job and once we have reached the point where we’re trying to do neuroblastoma over 90% survival rate, obviously there’s still a small percentage there that needs to be addressed. I think at that point I would be comfortable handing it off to the next passionate person and saying, “Hey, we’ve done a lot, take it on home now,” and move on to something else. I’ve always been interested in starting things, and so I’m sure I’ll start something else, but at least for the next five or seven years, this is where I’m at.

Wilma: Well, Kyle, before we wrap up, what would you like people to know that maybe we haven’t talked about, either about Beat Nb or about your thoughts on the non-profit world in general?

Kyle: I think the power of a team and the power of passion are incredible, and those are the two things that I take away from all this. I’m really big on always saying that everything that Beat Nb has done has nothing to do with any of us individually but has to do with all of us collectively. I am so proud always of the caliber of people, the impact that we have actually been able to have. We are beating cancer and it’s because of this crazy group of philanthropists and doctors and researchers and advocates and parents who are all standing up and together saying, “Let’s drive this forward.” And again, like I said earlier, the impact that a small, passionate group of people can have when they are driven is very big and I’ve been amazed by that and I think that if you see something that’s wrong, please stand up and do something about it.

Wilma: Well, at the Community Foundation of Tampa Bay we work with lots of folks, both on the philanthropy side and on the non-profit side and it’s always inspiring for me to hear your story and I know that you’re always willing to share what you can, and we see that with a lot of the non-profit partners, I think. We are going to be a stronger community when people all work together, just as you said.

Kyle: Yeah, and that’s something that I’m real big on, that we have benefited from – I personally have benefited from a lot of other people’s experience and been able to reach out to them and say, “I have a question,” or, “I don’t know how to do this,” or, “Should I do this?” Or what are the ways to achieve whatever it is I’m trying to achieve, even if it’s just how can I email 100 people at once? Simple questions to big questions. And I am a huge proponent of being able to give that information back to people. So if anyone listening ever has some question about anything that we have done that could perhaps help them, you could find us, we’re on the internet, we’re on beatnb.org, we’re on Facebook, all of those different areas. My email is kyle@beatnb.org, so people can reach out to me directly. I’m always happy to share any of that information and love to do so.

Wilma: Okay. Well, thanks a lot for chatting with us today. And again, it’s Beat Nb and the address is beatnb.org. We’ve been talking with Kyle Matthews, who is the Executive Director. I’m Wilma Norton from the Community Foundation of Tampa Bay and you can learn more about our work with donors, non-profits in the community at cftampabay.org and we’ll hope you listen next time for the next edition of “Inspired Giving”. Thanks.

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About the host

Wilma Norton joined the Foundation in 2014. She was a journalist at the St. Petersburg Times (now the Tampa Bay Times) for more than 20 years. Most recently, she was assistant director of public information at St. Petersburg College. Wilma has a BA in journalism and political science from Western Kentucky University and an MBA from Florida International University.


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