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CARRA Mathieu Nelessen - THE GAME CHANGER NETWORK

CARRA Mathieu Nelessen

Mathieu Nelessen

CEO – Childhood Arthritis and Rheumatology Research Alliance

 

CARRA’s mission is to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.  Mathieu joined CARRA in January of 2023, after more than a decade in leadership with the American Red Cross.

Mathieu is absolutely a game changer!  In this interview, you will hear from this highly networked leadership executive with comprehensive knowledge of delivering mission-based income results, strategy, programs and superior operational systems.

He has successfully raised millions of dollars for flagship national and international non-profits and Solutionz looks forward to working with him and with CARRA on the TravelingToGive initiative.

I loved hearing about Mathieu’s vision of transforming CARRA’s mosaic of stakeholders into even more passionate philanthropists by tapping into their everyday travel.

Game Changer Network host, Chicke Fitzgerald

CEO Spotlight on Mathieu Nelessen by Chicke Fitzgerald of the Game Changer Network

A part of our Philanthropy Series

Enjoy the interview

About Chicke Fitzgerald and the Game Changer

Chicke Fitzgerald is the CEO and founder of Solutionz Group, LLC and The Game Changer Network.

The Game Changer Network provides authors with a platform to tell their story about how they are changing the game in their world.  The show just celebrated its 15th anniversary.  Chicke has interviewed over 400 authors, celebrities and experts.

She is also the author of the Game Changer, a business fable about transformational business design.

Click on the image to order a copy of the Game Changer.

TRANSCRIPT OF CEO SNAPSHOT INTERVIEW WITH MATHIEU NELESSEN

 

2023_1027 CARRA Mathieu Nelessen.m4a
Fri. Oct 27, 2023

0:44 – Chicke Fitzgerald – Good afternoon, this is Chicke Fitzgerald, and we have a very special guest today.  We’re doing a spotlight series on the CEOs of organizations that are philanthropic. And again, sometimes it will be for-profit organizations, corporations who have a heart for giving, and sometimes we will be talking to CEOs of nonprofits.

 

Our guest today is Mathieu Nelessen, and Mathieu heads an organization that you may have never heard about. I certainly had not when our chairman of the board came to me.

1:19 – Chicke Fitzgerald – It’s called CARRA. And if you have ever known anyone who has a child that is dealing with pediatric rheumatic diseases, I guarantee you they know who CARRA is. Mathieu, welcome.

1:33 – Mathieu Nelessen – Thanks so much, Chicke. Thanks for having me.

1:35 – Chicke Fitzgerald – Well, let’s talk a little bit about you and then we’re going to dive into CARRA and CARRA’s mission. But I really want to start with what goes on within our organization. Giving isn’t what we do. It’s who we are. And we have always given out of our top line revenues to the charity of choice of our clients. And that is how we structured our business. So that really came before even the technology part of what we do. And I was sharing to you before we got on the call that I grew up in a home where my dad was a pastor.

2:17 – Chicke Fitzgerald – Both of my parents came from missionary families. My dad grew up in Brazil, my mother grew up in Pyongyang, North Korea, my parents were missionaries in Portugal.

 

So, you know, the whole giving thing was kind of a natural thing, and I never even questioned it, right? I thought everybody gave 10% of their income, to church or whatever, right?

 

So tell me a little bit about you and about how you grew up, and when did you really become aware of giving kind of as a way of life? Because it certainly is a way of life for you now.

2:52 – Mathieu Nelessen – So just like you, you know, we are a product of what we kind of learn from our parents. And, you know, I come from a like a mom who is incredibly philanthropic, who has traveled like your parents, right? The world on her own. And either she’ll go and run for three months with doctors without borders in Vietnam or she’ll go to Peru and then come back and do work in the states to help support and foster families and have members of those communities come and stay with our families. So we’ve always had people from around the world kind of in our family, and it was tied to my mother’s kind of philanthropic journey.

3:29 – Mathieu Nelessen – And then my father’s an urban planner, which doesn’t sound philanthropic, but he’s all about making communities sustainable, making smart communities, smart growth. And that’s part of philanthropy, right, this idea that you’re part of a community, that it’s sustainable, right, the really, really important pillars of philanthropy. So From the two of them, those that the foundation was laid, as I got into the nonprofit career, which I’ve been in for 20 plus years, my anchor is really in program delivery, in service delivery.

4:01 – Mathieu Nelessen – So I started in the most at risk public schools in New Jersey delivering adapted physical education programming for Special Olympics. To try and give these children and their families who had the odds stacked against them, right, in a public school setting, pathway into services through Special Olympics. And what I quickly found out is by building out really exceptional programming is that that draws the attention of people who want to support that work. So this idea of philanthropy when it comes to my professional career, 23 years later, is all around passion for service delivery.

4:38 – Mathieu Nelessen – Exceptional service delivery drives philanthropy all day, every day. And if you’re passionate about the work that you do, people feel it. They can they can they can they can see it on your brow, they can see it in your eyes, and they can see it in your heart. And boy, oh boy, that is a that is a pretty strong, strong power that people will follow that. And that’s, those are, I think those are really the roots and the foundation of what I do and how I do it and how I will continue to do it for the rest of my career.

5:09 – Chicke Fitzgerald – Got it. Well, and it’s so true. And one of our passions is helping particularly for-profit organizations understand that companies that give more, make more. Right. And once they get that, even if they don’t have a heart for giving, it begins to be something that they do. Right. And so, again, there’s a difference between people who just do something to give. Right. Because it checks the sustainability box. Right. On a lot of particularly public companies. That they’ve got a box to tick and they start doing that.

5:46 – Chicke Fitzgerald – But when you start seeing lives changed, oh my God, you can’t help but have it infect your heart, right? And that’s a good kind of infection.

5:57 – Mathieu Nelessen – You make me think about, you know, change in general. And if it’s lifting weights or diet, or if it’s philanthropy, it’s all the same thing. It’s repetitive, incremental steps leads to a new behavior. And that’s exactly what you’re talking about. You’re talking about changing muscle memory in the for-profit sector to get them to think more about, you know, waking up one day, two years down the road saying, hey, we actually are a philanthropic organization. And isn’t that incredible?

6:25 – Chicke Fitzgerald – Well, and here’s what I’m realizing is that many people are touched when they hear a story. So let’s let’s say that you have a video on your website about a child whose parents have found Kara. And, you know, I would like for you to tell us a little bit more about the organization, but we’ll get to that later. So they hear the story and they’re touched. But they’re not yet moved. We are all about helping people go from being touched to being moved by something that they do every day. And through our Traveling to Give product, which you are one of our newest clients and welcome to the family, where you will be able to give a tool to those parents who are struggling so much just with constant doctor visits and hospital stays and traveling to see, you know, on their own traveling to get care from a new specialist right and now they can reach out to the people in their circle who want to support that child who they know and love, and now they can not only be touched by that child story but they can be moved Every single time they go to a play, a soccer game, a wedding, a funeral, no matter what’s going on in their life, we tap into that life travel and help you make them into philanthropists, not by writing a check to you, but by just traveling.

7:45 – Chicke Fitzgerald – So that, and you can tell I’m passionate about that, right? That’s my mission is helping people like you grow your impact, right, because that’s what CARRA is all about. So tell us about CARRA and then we’re going to kind of backtrack in your journey back to the Red Cross and some of the other things you’ve done.

8:02 – Mathieu Nelessen – Yeah, so first of all, we’re thrilled to be part of the family. So thank you for bringing us in and I love this idea that it gives everybody a pathway to be philanthropic. And that’s what I love, right? And it’s a very unique mechanism to allow everybody, I mean, regardless of status, right, to become philanthropic. So CARRA is really a remarkable organization. And you kind of said it in the intro, but we’re obviously focused on pediatric rheumatic disease. It’s a number of orphan diseases, you’d think of juvenile arthritis, it’s probably the most well-known, lupus maybe is the second most well-known, but there’s a host of really unbelievably damaging conditions to children that are in the category of rare disease, which means there’s under 200,000 kids who have these, but these can be life-threatening and can be kind of life-changing and very, very difficult to treat, diagnose, kind of care for, lack of drug, et cetera, right?

8:59 – Mathieu Nelessen – So it’s a landscape that is in dire need of attention. And CARRA is really remarkable because we’re a network, a research network. So 15 years ago, you had pediatric rheumatologists all on independent islands, and there was no kind of mosaic, there was no tapestry to pass along learnings for consensus treatment plans or to build off of research. And what CARRA did kind of really brilliantly is start to connect the dots, start to drive young researchers and scientists and clinicians into fellowship, into early investigation around pediatric rheumatology, because there was only 20 years ago, less than 100 pediatric rheumatologists, now there’s 650.

9:48 – Mathieu Nelessen – So what CARRA has built is they’ve built this ecosystem to allow research to flow, to allow the building blocks of research to grow, to create this sense of community within this community from early investigators to very seasoned, highly decorated researchers and scientists. And in this, there are a whole tapestry of disease-specific committees with chairs and co-chairs and work groups that touch everything from mental health to health equity. And it’s our community that’s leading these work groups.

10:25 – Mathieu Nelessen – And what’s really remarkable at CARRA, which makes CARRA best in class, is in every one of those work groups, in every grant we give, every piece of science we drive, there is a parent or there is a patient touching that work. No grant gets written or given without the sign off of a parent or a caregiver or a patient. It’s really remarkable. So this idea of voice of the patient is embedded in absolutely everything we do. We have caregivers kind of on our board who have kind of, you know, lost loved ones who have struggled kind of with and who have successfully kind of, you know, achieved remission for the time being right with their children.

11:05 – Mathieu Nelessen – I mean, this organization is truly remarkable. And we also have the largest pediatric kind of rheumatic disease registry in the world, which means that we’ve got clinical information on over 15,000 children, which creates a very, very powerful data set in terms of being able to do data harvesting for any kind of clinical trial, clinical information, real world evidence, to be control groups for trials. I mean, it’s a remarkably rich data set. We also have biosensors. We have 2,000 biosensors, which are, you know, genetic RNA, DNA, biospecimens, which really are the connecting link between clinical information.

11:49 – Mathieu Nelessen – So we’re really focused on the future of creating that linkage and really building on this research platform to find more breakthroughs in each of these disease states. So we partner with a number of organizations. The Arthritis Foundation is a remarkable partner of ours and supporter of ours has been and will be. But we partner with a number of other organizations that are advocacy groups that need research. So it just is. And I have to tell you, I’ve been in this business for 23 years, the nonprofit business.

12:17 – Mathieu Nelessen – I have not been part of an organization that has gotten my neck hair to stand up the way that this organization has. And these doctors, these researchers, these scientists are remarkable. They’re so passionate. They’re the lowest paid in the medical profession. And they are so eager to solve these mysteries. And that’s what makes this group absolutely remarkable. And they’re pediatricians. They are lovely, smart, hardworking, kind. So our mission is to kind of change the world of pediatric rheumatic disease, period.

12:50 – Mathieu Nelessen – Bend the curve. And that’s what we’re going to do. And that’s what we’re intent on doing. And philanthropy is going to be a huge piece of us being able to do that.

12:59 – Chicke Fitzgerald – Well, so now I don’t have to ask the next question, which is, how did CARRA attract you? You’ve just spent a few minutes telling us all of those reasons. And I thought I knew a lot about CARRA, but you have just opened my eyes to some of the other ways that we can work together. And again, imagine the family who has been battling this alone, who discovers the CARRA network, right? Which is, and I love the word mosaic. I love how you describe that tapestry. And now we want to be a part of that mosaic and tapestry because through each of those different elements of the mosaic, each one of them, each person has a network of people who all travel.

13:48 – Chicke Fitzgerald – I mean, Americans travel 4.6 times a year just in general, and those aren’t 4.6 big vacations, but that doesn’t even account the, you know, my sister is going to be having chemotherapy in a few weeks and I’m going to travel to LA and I maybe need to be near City of Hope instead of staying at her house. And so I need to find a hotel nearby. And so now we could reach out to the rheumatology specialist at City of Hope. And again, the whole network of friends and family and colleagues can use these tools and all contribute to a mission.

14:26 – Chicke Fitzgerald – And that’s what excites us is being a part of that tapestry. Right. So I want to talk just a little bit about kind of life before Kara. And again, we met because Peter Jim Alva has been just a mentor and formerly a board member of mine, really, for the last seven years. And is just an incredible supporter of what we’re doing. And the two of you met when you were both at the Red Cross. Tell me a little bit about how the Red Cross played the role in your philanthropic journey.

14:58 – Mathieu Nelessen – Yeah, so the Red Cross, I have three pretty big steps in the Red Cross. I was a regional CEO, and I was in that role for a very short amount of time when Superstorm Sandy, if you remember, kind of made landfall in New York and New Jersey and just ravaged our communities. Realization about the true horsepower of philanthropy. So the day after, I remember very well, Jim Craigie, who was the former CEO and chairman of Church and Dwight, so the current company of Arm and Hammer, called us directly.

15:34 – Mathieu Nelessen – And they’ve been, they were a modest partner of ours for the longest time. And he said, we’re wiring you a million dollars. Um, and it just, you know, it really blew my mind because I said to myself, we’ve been working at this relationship and we’ve been, you know, been a five-figure relationship, 25, $50,000. So to hear that phone call right away to say, Hey, he knew that we made a difference on the ground. He knew that we were impacting lives right away. Um, so that was the true, like, I’ve never seen the unbridled, you know, the hood off the car.

16:04 – Mathieu Nelessen – The muscle of the engine of philanthropy. Red Cross showed me the muscle of philanthropy. It also taught me how to really, and you do such a nice job with this, right, but how the story of impact is really what brings people in and really is the tool to educate people. It’s not the The session. It’s not the academic session. It’s not the leaflet and the pamphlet. It’s not that it’s this story. It’s bringing people in. It’s about relationship building. It’s around, you know, bringing you in to let you understand the power of what this organization is doing.

16:42 – Mathieu Nelessen – And how you can be part of that and how incredible it is. And getting people, kind of getting that enthusiasm to seep into others is exactly the idea here, right? And what you talk about is power in numbers, right? If we can make this permeate into kind of our entire community, the power of numbers, you know, you can’t look away from that. It’s transcendent.

17:05 – Chicke Fitzgerald – We talk about it slightly different. I mean, it is the power of numbers, but we, aren’t just a travel technology. We are a multiplier for whatever you’re already doing. Because if somebody writes you a check for a million dollars, clearly you’re going to say, thank you very much. But imagine the power of Arm and Hammer saying, you know what, we’re going to use this travel tool for all of our people that travel. Now you have multiplied that every single day, even after that million dollars is spent.

17:33 – Chicke Fitzgerald – Right. And it is continuing to fill the coffers. And we think that particularly the nonprofit and for profit relationship coming together like that and tapping in to corporate travel. And again, we’re not trying to replace the corporate travel agency at all, but we think that there is just incredible power at the employee level. Right. And we’re exploring some of these things with Peter and with your former employer of how we can leverage their group that does nothing but build those corporate partnerships.

18:10 – Chicke Fitzgerald – And we can talk off camera about that. But so, you know, I watched Peter, who had spent all of his adult life up to that moment in the travel industry, which is how he and I met. And then all of a sudden, I have watched this man Just transform and and, you know, Peter, he’s a deep thinker. He’s very sales and marketing focused, very external as opposed to the internal stuff. And he just fell in love with philanthropy. And I’m just very interested again, in the transition from the work that you did in New Jersey.

18:47 – Chicke Fitzgerald – That got you to the place where you’re now the CEO of a very, very important organization. Again, one of my missions is to have everybody know who you are, right? You’re one of those quiet charities, but you’re a very, very important one.

19:01 – Mathieu Nelessen – I love it. I love it. And I should say, you know, Peter. So when I transitioned from humanitarian services, which is where I was as a CEO and as a division vice president in Northeast, overseeing the humanitarian operations, I went over into biomedical services about six months before the pandemic hit. And they asked me to be the executive in charge of kind of standing up our COVID response. And the Red Cross is 40% of the US blood supply, so huge role. And I was in charge of national process, strategy, customer experience, pricing, equipment, fleet facilities, all of that fell under me, a huge job.

19:37 – Mathieu Nelessen – And I didn’t know, I’m not a process excellent person by nature, but I’m a good change management person. And Peter, I have to tell you, was the senior vice president that took me kind of on. And I kind of adore him for that, right? Because he really made it easy for me to come into a tough organization that’s FDA regulated. But what that experience did in biomedical services was tee me up to be a much more well-rounded CEO, because I get to come into CARRA, which is a very unique organization.

20:11 – Mathieu Nelessen – And really start thinking about things the way that biomedical services did. Really start thinking about things like margin, which in the nonprofit world, you know, it’s not very attractive to start talking about margin and productivity and efficiency and growing top-line revenue and being productive and process excellence and driving out kind of inefficiency on the expense side. But that’s what we’re going to do to build a very lean, high-powered organization, because my objective is to drive as much impactful research forward as humanly possible.

20:43 – Mathieu Nelessen – And to tell this amazingly compelling story about what it is that we do. And those are all skills that I learned over my 10 years at the Red Cross that I get to apply here. And it’s being incredibly well-received because there’s also something that Gail McGovern at the CEO kind of also would always say, and I think about it so often, but she says, heart, head, heart. And as long as you do that, so I’m an operationally minded person. So for me to remind myself about, Go in with your heart, then operationalize, and then come out with your heart.

21:18 – Mathieu Nelessen – Do letters that way. Do emails that way. Structure your change management that way. Heart, head, heart is always a winning recipe. And and I, that’s a, that’s a wonderful lesson that I learned from Gail McGovern.

21:29 – Chicke Fitzgerald – Well, it’s funny because a portion of our logo, and it’s the icon that kind of moves into all of our different product branding, the core of our particular application is all about proximity. That if you’re going to stay, and in fact, the way the product came to be is my 15 year old niece was on vacation, not with her own family, but with cousins and went on an ATV trek and the ATV flipped and nearly severed her arm. So I get, I was at a travel, conference in Chicago. And I get this call from my oldest sister saying, we’ve all got to get to Billings, Montana.

22:13 – Chicke Fitzgerald – And none of us live in Billings, Montana, right. And and I’m in the travel industry. So they say you find the hotel. And you know, we’ll all get there, you know, one was going to drive and one was going to fly. And I realized that Billings, Montana, Billings, Montana is 74 square miles, right. So you don’t just need a hotel in Billings, Montana, I needed It near the hospital where she was going to be because we had no idea how many surgery she was going to have. And and so I did find a hotel and they were able to save her arm and now she’s got 2 kids and happily married and all as well.

22:50 – Chicke Fitzgerald – But that trip. Was the birth of the Hotels Nearby Hospitals, which was the first brand that we built with this tool that could find any lodging. And at the time it was just hotels. Now it’s private homes and it’s apartments and it’s condos for people who need to stay longer or who have to have a kitchen because by the time they get home from the hospital, restaurants are all closed, right? Incredible. And so I came home and I said to my husband, I’ve got to fix this, right? I’ve got to fix this.

23:20 – Chicke Fitzgerald – And at the time I was building another technology venture and Peter was helping me with that as well. And I called the tech company and I said, listen, I’m going to pay for this privately. This isn’t coming through my company, but I want to build a little snippet of code that a hospital can put on their website. Right. And so that was the birth of this. And I think that was like, I don’t know, 2012 or something, but it was a long time ago. And that is the foundation for what is now traveling to give, but what I started to say is, so the pin, the map pin speaks proximity.

23:58 – Chicke Fitzgerald – Well, a couple of years ago, we were driving back from a business meeting of talking to a potential partner. And I said, you know, what I really want to do is I want to say there has to, and it’s exactly what Gail said, you know, heart, head, heart. I wanted there to be an intersection of proximity and the heart, right? The giving piece. And so now we have smart meets heart and the pen actually nestles in the heart, right? And it’s all one thing. And so I just love the way that you tell your story, Mathieu, you have inspired me.

24:34 – Chicke Fitzgerald – And I’ve got so many ideas for you guys, so I can’t wait until your new person is on board and we can actually get the implementation underway. We will have you back later to tell us about the success of it, because what I wanted to end with was, again, I know it is difficult for a C-level executive in a nonprofit to have to think about profitability, but whatever drops to the bottom line, you can multiply into impact. And we want to help you show that impact and be an instrument of that multiplication that is going to happen within CARRA.

25:06 – Chicke Fitzgerald – So thank you so much for your time. I just can’t wait to get to know you. And where are you based? Are you in DC?

25:12 – Mathieu Nelessen – I’m in New Jersey.

25:13 – Chicke Fitzgerald – Oh, in New Jersey. Okay.

25:15 – Mathieu Nelessen – I am. Yeah. And Chicke, thank you. You’re you’re you, you likewise are an absolute inspiration. We’re so happy to be part of the family. Our director of development is now on board. He’s someone who’s a former red cross, or so I’ve recruited him. He’s someone I work with. So you and I will hook up offline and kind of keep talking about partnership and alignment. But you are an inspiration in terms of what you’ve been able to do. And I’m humbled to have been here. And thanks for letting me talk about CARRA and letting me and helping us to get the word out about Kara.

25:44 – Mathieu Nelessen – We really appreciate it.

25:46 – Chicke Fitzgerald -It has been absolutely delightful. And again, we look forward to just being a part of your success because we are here as servant leaders to our clients. And we see ourselves in that role of being a part of your team. And again, we don’t want to be a technology provider or a vendor to anyone. Yes, we do provide technology and we do provide marketing support, but we want our people who are responsible for helping you to be successful to be be seen as part of your organization and extension.

26:21 – Mathieu Nelessen – It’s incredible. It’s incredible. Well, we’re happy to be part of the family.

26:25 – Chicke Fitzgerald – Okay, terrific, Mathieu . Thank you so much and just have an amazing weekend.

26:29 – Mathieu Nelessen – Thank you, you too.

26:34 – Chicke Fitzgerald – You’ve been listening to The Game Changer. Ideas Inspiration. Innovation. With Chicke Fitzgerald.

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