The Truman Charities Podcast
Truman Charities is the only podcast that donates $250 to each of our guests' charity of choice.
Jamie Truman, connects with individuals who are making a significant impact in their communities. From New York Times bestselling authors to innovative farmers, we share the untold stories of those who are shaping the world around us. We feature trailblazers, influencers, and innovators who are driving positive change, such as the lawyer who fought Dupont for two decades to protect our water and the vital work of an organization dedicated to supporting women who have been trafficked within the United States.
Jamie Truman is the co-founder of Truman Charities, an entirely volunteer-run organization. Since its inception in 2010, Truman Charities has successfully raised over $2 million for a variety of charitable causes.
In addition to her work with Truman Charities, Jamie is also the author of the bestselling book "Vanishing Fathers: The Ripple Effect on Tomorrow's Generation." This book has generated over $80,000 for charities supporting at-risk youth, as 100% of the book's proceeds are donated to these vital organizations.
The Truman Charities Podcast
13 Kids a Day: Why Nicole Giroux Is Fighting for a Cure for Pediatric Brain Cancer | Lilabean Foundation Ep. 153
13 families a day are told their child has brain cancer. This statistic is rising, yet pediatric brain cancer is still underfunded and advances in treatment options aren't coming fast enough.
In this episode, host Jamie Truman speaks with one mother who refused to wait and built a foundation to fund more research and bring hope to families. Nicole Giroux, founder of the Lilabean Foundation, shares how they’ve built a community that supports families, honors children affected by pediatric brain cancer, and funds the research needed to develop safer, more effective treatments.
Learn how community fundraisers and private donors are helping — and how you can get involved!
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Email: info@trumancharities.com
This episode was post produced by Podcast Boutique https://podcastboutique.com/
Within a week of her diagnosis, I knew I was going to do something with my life around Lila's story. That's Nicole Giroux, a mother whose world changed overnight when her daughter Lila was diagnosed with brain cancer at just 15 months old. What started as a fight for Lila's life has become a national movement. Today on the Truman Charities podcast, we'll learn about the story behind the Lila Bean Foundation. Nicole shares how she went from survival mode to spearheading a foundation that's funding cutting-edge trials, supporting families, and their record-breaking fundraising events. This episode highlights the power of resilience and the significant impact a community can have when we unite for our common cause. Let's welcome Nicole to Truman Charities. I wanted to start out with what were those early days like for you and your family when Lila was diagnosed at only 15 months old? And I also, you know, when was that moment when you decided I want to start this Lila Bean Foundation?
SPEAKER_00:So actually her diagnosis anniversary is coming up next week on September 25th, and it will be 16 years. So it's it's September is always kind of an emotional time bringing back those memories. And also it's childhood cancer awareness month. Those first few days and weeks are just indescribable, really. And you get that gut punch of hearing your child has cancer. Still 16 years later, I can go back to those feelings. And so you just kind of go into survival mode and do the next thing. But it wasn't too far into Lila's diagnosis and our journey that we just realized wow, there's a lack of options for treatment for childhood brain cancer and a lot of uncertainty about which ones are the right ones. It was a steep learning curve. But in that initial year of treatment and learning and research, realizing how much was unknown and the lack of funding for childhood brain cancer. But it wasn't until a couple of years later that we started the Lila Bean Foundation because truly those first few years were just survival and getting her through those initial chemotherapy treatments and stabilized and that kind of thing. So it wasn't until 2011 that we started the Lila Bean Foundation. But I knew pretty much within the week after her diagnosis that I was going to do something with my life around Lila's diagnosis.
SPEAKER_01:And what would you like families to know and understand about people that are going through this with their child?
SPEAKER_00:A lot of stuff. You're not alone. There's so much support out there. I think it can be a very isolating thing to have your child diagnosed with any serious illness, especially cancer, brain cancer, especially as well. Not alone. There are resources, there's hope, I think is a big thing that I would say. And that we need to collaborate. We need to come together as a community. Historically, the pediatric brain tumor community has been pretty splintered, both from a science and research side and also from the foundation philanthropy side. That has drastically changed, I would say, in the past 10 to 11 years. Thank goodness. What we don't need is another foundation. We need all to come together and support the great work that foundations like the Lila Bean Foundation and so many others are already doing.
SPEAKER_01:I noticed when I was introduced to your organization, is kind of the most inspiring parts about the Lila Bean Foundation is the way that you've brought the community together and you've rallied around this mission. If you could tell us, is there any like stories that you can think of that show just how powerful your support is within the communities for these families?
SPEAKER_00:Well, I I'll just start off by saying I'm humbled by the community that we've built and that has come around to support initially my family, but then now so many other families. It's really remarkable and very humbling. I'm so grateful for our community. And I would say two specific examples would be the Corno family and the Zachman family, who have been involved with the foundation for a number of years. Both of those families lost their daughters this summer to two different forms of pediatric brain cancer. And we're heartbroken. We're heartbroken anytime we lose a child. These families were very close to myself, to the foundation. Their communities had become the Lilamine community. But I hope, I think, and I hope that we have been able to support them through this devastating loss and will continue. We've started funds, research funds in both of their daughters' honors for their specific type of brain cancer. And we are just more determined than ever to figure this out, find better treatments, and honor these families who have suffered this immeasurable loss and yet still want to find a cure for this disease for children in the future.
SPEAKER_01:That's how I had learned about the Lila Bean Foundation was from Stewie and their family. I did have a question because, and since you're you're such a leader in the space, I thought that you would have kind of more of an insight on this. So about five years ago, one of my good girlfriends from high school, she had lost her daughter to DIPG, which is, as you know, a form of brain cancer. And then I was introduced to Jenny Moser. I don't know if you know her, that she she runs a chef defeat DIPG. She's one of the co-founders. And I interviewed her and we had this small fundraiser for them. And then it must have been just, gosh, like a month or two later that one of my husband's very good friends, his stepson, also was diagnosed as well. And then, you know, and then I met Stewie and their family. And it just seems I was like, gosh, it just seems like it's becoming more prevalent amongst children. And I tried to look online and you kind of get this conflicting information. And I want to know, in your opinion, is it increasing the rates of diagnosis for children, or does it just, to me, just kind of seem that way?
SPEAKER_00:Well, I am not an expert. I will, I will say that for many years it was the stat was 11 children a day. And about three years ago, that changed, and it's 13 children a day. So that tells us that we're going in the wrong direction. You know, I've talked to some of my contacts at Children's National about this, you know, about how many cases they're seeing. I think they are seeing more. Why? I don't know. That's part of the research, right? It's not a genetic disease. So that would say that it's environmental. But that's why it's so important that the research we're supporting is to understand the science and to understand the molecular makeup of these tumors and why, you know, all these tumor pathways are changing and mutating and all this stuff. I mean, that's at the core, I think, of how we're going to understand this disease and then be able to target treatments. And that's why I have felt from the get-go, before I even knew half of this, that I wanted the Lila Bean Foundation to be a foundation that supported pediatric brain cancer research as a whole. So not just DIPG, not just medulloblastoma, not just what my daughter Lila has, which is low-grade glioma. I believe it's all interconnected. I think it's important. I'm very proud of the fact that we support, because there's, I think it's over 25 types of primary brain tumors in children. Then you've got all the subtypes underneath. So it's a lot, but I believe it's all interrelated.
SPEAKER_01:So can we talk about some of the trials that the Lila Bean Foundation has been able to support?
SPEAKER_00:So the Lila Bean Foundation has supported a number of research projects over the years. They're all listed on our website for people that want to check those out. Actually, more recently, uh, just this summer, committed over a half a million dollars to two trials at the Pediatric Neurooncology Consortium, Pinoch, is the trial arm, one of the trial arms that's doing research trial work for children with pediatric brain tumors. So we're really excited about that. That's a big commitment for us. We're funding one in Ependymoma, which is what Cameron Cornot had, and one in meduloblastoma, which is what Casey Zachman had. We're co-funding these trials are expensive, but we're really excited to move that science forward. Historically, we haven't funded a lot of trials. We funded more preclinical work in the lab and some infrastructure work at the children's brain tumor network. Again, I really believe that, I mean, it's all important. It's all important, but I think kind of spreading the funds over not just trial work, but also the preclinical work and the infrastructure work to understand these tumors and the science is really important. But we're very excited about these two trials that we just co-funded.
SPEAKER_01:How do you see the Lila Bean Foundation in the future? What are your kind of goals for your organization?
SPEAKER_00:Well, my always joke that my ultimate goal is to be out of a job. I mean, truly. But in the near future, we just keep raising more money. Uh private foundation funding is now more important than ever. Pediatric brain cancer has always been underfunded, always, always the work that foundations like us, so many like us, are doing is scientists are going to be relying on those dollars. So I want donors to know that they are making a really important investment when they fund us because these dollars are needed. I mean, pediatric brain cancer is the leading cause of a cancer-related death in children. So not leukemia anymore. It's been years now. And there's 13 kids a day, and families running out of treatment options, like the cornos and the Zachmans, their kids, you know, being diagnosed and then passing away within four years, five years, exhausting all the options out there and fighting so hard and doing all they can, and then research and science failing them. So the future is that we just we work harder. We need our community. Our fallball event has just grown year over year, and that's kind of our cornerstone fundraising event. We're hoping to raise a million dollars at least this year at that event. And I think that there's lots of opportunities to get involved. You know, it is childhood cancer awareness month, but we're working year-round. We have launched a program in May called LBF 365. Essentially, this is something there's different levels of support, seven days a week, 24 hours a day, you know, that these children, these families are working. So that's kind of it. And then another exciting thing in terms of future is that our team's growing. I'm looking for a partner to work with me alongside me to lead the Lila Bean Foundation. So we are actively searching for an executive director, which you can learn more about on our website. But we've got a lot of work to do and we need, we need more leadership and a stronger, bigger team.
SPEAKER_01:So just to give people an example, the fallball. So one of my girlfriends, she uh texted me and said, you know, you know, get your tickets for the for the fallball. And I was like, Yeah, okay, I'll do it. I'll do it tomorrow. And then uh tomorrow hit, and I was like, oh my gosh, within 24 hours, you guys were completely like.
SPEAKER_00:It's a little over 24. Yeah, we did, and that was a record. I mean.
SPEAKER_01:And I I was like, oh my gosh. I was like, it's already sold out. And I work with a lot of organizations, and that never happens.
SPEAKER_00:Like it never does. It's very humbling. I can't believe it. I felt like it was like a Taylor Swift concert. You know, like people were like buying when they went on sale. I was like, what? Wow. I mean, wow. Yeah.
SPEAKER_01:Yeah. So I I was so I'm disappointed that I couldn't get tickets, but so excited that I couldn't too, just because this is, I mean, that's just a testament to to how you've impacted the community and what you guys are doing. So people that obviously cannot go to the fallball.
SPEAKER_00:I mean, how we do have a wait list, which I know you're on, and I'm sure we'll, you know, get through it. We just wait, wait and see who doesn't use their tickets.
SPEAKER_01:So let's talk to how can we help you if we can't make it? And there's a lot of people that are, you know, listening that are outside of the DMV. Like, how can they help the Lila Bean Foundation if they if they can't make the fallball?
SPEAKER_00:Well, with the fallball, if interest, there are silent auction, like for the online silent auction tickets. So you can participate that way and maybe get a great silent auction item. You can always financially support fallball. There are a few sponsorships left, not many. But outside fallball, as I mentioned, LBF 365 is our new giving program. And it's really meaningful. And I I love how you can choose your level of monthly giving based on a really kind of meaningful statistic to do with pediatric brain cancer. And spreading the word, our heroes pages, um, you know, Cameron and Casey are LBF heroes, and I think we have about 25 heroes now. We don't want to grow that page, you know, we don't want to have to add more children, but we know that there are children out there who have already been diagnosed, and we really want to honor them and tell their stories. Um, I connected with the new family just yesterday. We want to offer that outlet to people to tell their child's story and to just, you know, whatever they want to do with the page. So if you know a child or a family that, you know, is in this pediatric brain cancer world, just a connection with me is something that's really important.
SPEAKER_01:I went onto the page, and that's so heartbreaking to read some of these stories. But what I did really like what you guys have done is that you've created your own podcast where you're highlighting some of these LBF heroes. So tell me a little bit about why you decided to create this podcast and and what you'd like to get out of it.
SPEAKER_00:So I think it's so cool, and I can't take much credit for it at all. My colleague Sarah Lilly, who's director of operations and communications, and our team, it's kind of our junior board. It's called the Ambassador Council. So it's these kind of a younger generation that comes together, volunteers at events. Actually, I don't know when this is airing, but we have uh an event at Baby Cat Brewery on this Sunday for it's the hope celebration. Anyway, the Ambassador Council runs this event, they do the podcast as well. And Derek, who's on the Ambassador Council, has just done a phenomenal job. It's just, you know, all volunteer run. And he just has a passion around it. So um, there have been four seasons, I think about 25 episodes, interviewing doctors, families, siblings. Some of my favorite episodes are my son did one last summer, Braden, which was awesome. Of course, a favorite. Jack Raleigh is another one of our heroes. He's actually a survivor. He has a music production company. He's going to be at Fallball this year as our entertainment, but he did a great podcast episode. And of course, Dr. Brian Rude. So it's just been fun. I can't take any credit for it. I've been on it a couple of times, but Sarah and Derek just run it and they just do a great job. And we want more people to listen.
SPEAKER_01:Yeah, I actually listened to a couple of them in the one that I did listen to. I listened to two, and one of them was the one that you, your son, that your son did, which was really and I I love kind of hearing from a different perspective that usually don't hear from, which is a siblings. We usually don't hear from the siblings and how that affects them. And I I want to know from you personally, like, how has this changed you from, you know, before your daughter was diagnosed to now? How has this entire journey changed you as a person?
SPEAKER_00:Lots of gray hair. But um it's changed me for the better. It's changed, you know, I think my family for the better. It's you can choose what you're gonna do with something like this and a diagnosis. You choose how you want to move forward. It is uh completely strengthened my faith. Faith is a huge, huge part of this for me and has been for Lila and our family and perspective totally different. And, you know, Lila day-to-day is a good reminder of that because she does not sweat the small stuff and she is just so easygoing and uh happy. And I don't know if that is a result of what she went through as a child or just the way God made her, but you can't help but just uh be happy around her. And it's just the diagnosis, it's given me a purpose. I mean, this is what I've this is what I've kind of done with my life since, and I'm incredibly grateful, proud, and humbled by what we've built as a community.
SPEAKER_01:Uh what was the one thing that you would like listeners to get out of this?
SPEAKER_00:Uh that your engagement, your donation, your awareness matters. It takes a village, truly. As I mentioned, the community is facing, you know, funding cuts and private philanthropy is just going to be so important for the science. I can't stress it enough. I mean, they're going to be relying on organizations like ours. And so sharing, listening to the podcast, sharing the podcast, checking out the website, signing up for the newsletter, of course, a financial donation, but it's not just that. It's all of those other things equally. So it matters. Each person that engages matters. Nicole, how can people follow you? You can follow us. Our website is lilabeanfoundation.com. And we are also on Instagram, LinkedIn, Facebook.
SPEAKER_01:Did you want me to say which No, I'll have everything in the I'll have everything in the showcase. Everybody take a look. But before I let you go, is there anything that we haven't covered that you think someone should know?
SPEAKER_00:I just want people to understand that the mission of the Lila Bean Foundation is to raise funds to support collaborative and groundbreaking research to find safer and more effective treatment options for children with brain cancer.
SPEAKER_01:All right. Well, thank you so much, Nicole, for coming on. And I'm still like an awe that you guys are all sold out for your fall bulb, but there's so many different ways that people can help you by either sharing and donating or actually going on and for the silent auction item. Cause I know that last year, a lot of my girlfriends, I was actually at another charity event that same night. So I wasn't able to make it, but they were telling me how fabulous it was in the amount of really great auction items that you guys had donated to you for year this week. They had a fantastic time. They absolutely loved it. So I want to thank you again for coming on, and I want to thank everybody for tuning in to another episode of the Truman Charities Podcast. I really loved talking with Nicole and learning more about the Lila Bean Foundation. Of course, make sure to check out our show notes so you can follow Nicole and the Lila Bean Foundation. If you liked this episode, please make sure to rate and review the Truman Charities Podcast. We are a 100% volunteer-based organization. And so these reviews really do help us grow this podcast. And if you'd like to follow us, you can follow us on Instagram at Jamie underscore Truman Charities on Facebook at Truman Charities. You can follow me on LinkedIn at JamieTruman. And so you don't miss any of our upcoming events. We do have our Halloween party coming up in October 25th for the Salute Military Golf Association. If you want to make sure to learn all about our upcoming events and our Bethesda's best happy hours and all that good stuff, make sure to go to Truman Charities.com and sign up for our newsletter. Thanks again for tuning in to another episode of the Truman Charities podcast. Until next time.
