Obstacles to Opportunities
When faced with life's obstacles, let's channel that negative energy into positivity and forge opportunities. Throughout the nation, business owners will share their experiences of triumphing over daunting challenges in their careers and lives, illustrating how they've harnessed these experiences for growth opportunities.
Obstacles to Opportunities
Beyond Awareness: Prioritizing Pediatric Cancer with Robyn Spoon
Join us as Robyn Spoon, a dynamic entrepreneur and founder of the nonprofit Elevate, shares her deeply personal journey that began when her son was unexpectedly diagnosed with rhabdomyosarcoma. This life-altering event propelled her into the world of pediatric cancer advocacy, unveiling the stark realities and urgent need for reform in research funding and treatment. Robin’s story is both a heartfelt reminder of the challenges families face and a call to action for improved awareness and resources in the fight against childhood cancer.
Pediatric cancer remains the leading cause of death by disease in children, yet it is disturbingly underfunded. The obstacles families encounter, from outdated treatments to the lack of comprehensive support, reveal a critical gap in our medical system. Our conversation with Robin underscores the importance of empowering families with the right tools and information, while emphasizing the community’s role in driving systemic change. We share personal experiences, highlighting the need for new perspectives and enhanced advocacy to transform pediatric cancer care.
My hope is to build a coalition with others with a similar desire to change the story for those who follow us…and to do it fast! And while we pursue this mission, we will arm patients and caregivers with the most current information possible so that their families are able to make critical decisions on behalf of their child.
She shares how the loss of her son to pediatric cancer has ignited a movement of others who want to change how pediatric cancer is treated. They're ready for change and they're getting a movement of others involved - this inspiring story will leave you ready to jump in and join the movement!
Check out: https://elevatechildhoodcancer.org/ to get involved!
welcome to the obstacles to opportunities podcast. I am jess powell, your host, and we have robin spoon here. Um, we are doing our, we're doing something different. We're doing something different. We're doing a virtual Zoom podcast. So I'm kind of excited about this. So you are our first virtual guest.
Speaker 2:Well, that makes sense, because you, we don't ever know where you are.
Speaker 1:So it's this is perfect.
Speaker 2:This is perfect. It's great to be here, thanks for having me.
Speaker 1:Okay, so let me get into it. Who is Robin Spoon? Okay, let's first say Robin Spoon's family business built my first house. So that was I mean gosh what. Oh, 15, 20 years I don't know how long. I don't want to date myself, but it's been a while. So we met through that process and that's been years ago. She is a serial entrepreneur, so I've been able to watch multiple of her businesses grow and thrive and her start new things. She is a mother, she's a wife, she's an educator and she most recently is the founder and CEO of Elevate, a nonprofit that advocates for childhood cancer research and advocacy. And then I could go into all her multiple education degrees it would take us too long. She is on her way to finishing up her PhD. So thank you, Robin, for being here. You are on my short list. When I first started the podcast, I was like we got to get Robin being here. You are on my short list. When I first started the podcast, I was like we got to get Robin in here.
Speaker 2:She has some things to say Well usually, but it is really good to be here. I just have to say for just a second that when my husband first met you and Brian, he came home and just said I love these people, I love building this house with them and we need to make sure that we keep them as part of like our people, because he just really saw something in both of you that was really special. So it's kind of fun to be here, however, many years later, doing this together.
Speaker 1:And we've had so many cross paths and connections and points where we've come back together even after I've moved, and it's been, you know, really great to just be able to. First of all, I, like I said, I've tracked along with Robin's journey of owning multiple companies. I've really respected what her and Joel grew in the real estate world. Just honestly, it was like every other house they were building in our community. It was amazing.
Speaker 1:And then we reconnected because Robin had started kind of an educational like consulting, counseling center for children to help them figure out what they wanted to do for college, get them prepped. She had so much background knowledge on. That was, you know, amazing. And then the most recent thing I really want everyone to hear about, because being a friend of Robin's has been, being, has honestly led me to places that I did not know that I needed to go, with understanding pediatric cancer, research and advocacy, you know. And, Robin, you might be able to kind of just share with us a little bit of your story there and then I will kind of pipe in with some things you've taught me about it, because I want people to understand and know about this.
Speaker 2:Well, I appreciate it. It's not something that we thought we were going to be facing. In fact, it was just crazy because my husband and I had just launched our youngest child off to college. So when we confronted pediatric cancer personally, we had literally just celebrated becoming empty nesters. We were empty nesters for I think six weeks. We dropped our youngest son off to college, we took some funny selfies, went out to dinner, celebrated, we did it, and then, six weeks later, we were really just confronting this terrible disease.
Speaker 2:So, first of all, I had no idea that a 21-year-old could be diagnosed with pediatric cancer. So that was a real shock to us in the fall of 2020, when our very healthy young adult son was diagnosed with something called rhabdomyosarcoma, of which I'd never heard the word before. So we did not know that was something that could happen and did not know how devastating it could be and how archaic the treatments were. I mean, that's really where things started for us was didn't know that you could get cancer at a young age oh, not at a young age, at this weird age. And then I had this vision that we had done so much that treatments were better.
Speaker 2:It looks so fantastic.
Speaker 1:It seems like I mean, there's always fundraisers for pediatric cancer research, right Like there's massive. I hear about it, you know, and that that was what was confusing to me too when we first started talking is that, you know, I've heard of big organizations talking about this. It's not like we don't talk about it. So what did you kind of uncover in pediatric cancer research and where's the money going and what's going on?
Speaker 2:Yeah. So first of all, if you think about the fact that one drug trial costs about $20 million and the largest nonprofit in the United States that does great work and fund raises for pediatric cancer research, raises about $25 million a year. So if you imagine that there's 100 types of pediatric cancer, we've got the largest entity raising around $25 million a year, and that barely scratches the surface to fund one trial. And then the question started to come to my mind huh, there's a lot of different kinds of cancer that I don't see anybody fundraising for Yet. They seem to have advanced treatments. So we could go through that list to have advanced treatments. So we could go through that list.
Speaker 2:There's the big four adult cancers that receive a lot of funding from the federal government for research, and then also the pharmaceutical industry. The free market is super interested in developing drugs that tackle diseases that affect a lot of people. It makes sense. And where the money is going to be a lot of people, it makes sense. It means where the money is going to be. So all the research that's happening. There's an enormous amount of effort being given to those kinds of things, but childhood cancer is receiving a pittance of the federal funding and the free market doesn't care, and so, basically, we have left fundraising in the hands of the exact people who've been directly impacted, who are exhausted, don't have the resources, and the parents, the patients, whatever, have been left to solve this problem.
Speaker 1:Okay, I'm going to just say what someone else may be thinking. But pediatric cancer is just so rare. Right, it's so rare.
Speaker 2:Yeah, it is the number one cause of death by disease in our children. That was shocking to me when you told me that because, yeah, I mean it is.
Speaker 1:And just to think the lack of funding that we currently have for the number one cause.
Speaker 2:Cause of death children, yeah, and the number one then cause like. For example, I've been digging around because the childhood cancer community has been very frustrated, feeling like the outcome numbers that we see just don't feel right to us. They report around 80 to 85% survivorship of kids who are diagnosed. That's to the five-year mark yeah, if you go five more years, 50% of the kids's to the five-year mark. Yeah, if you go five more years, 50% of the kids alive at the five-year mark have died from the disease or some other treatment related illness. So really about four in 10 kids diagnosed survive and I've stood in front of so many families whose kids are surviving. They don't. I heard a mom the other day tell me I don't want anybody calling my child a survivor. We're surviving. Survivor sends the message that it's done.
Speaker 1:It's done. There are no side effects. We're not dealing with the illness anymore, no more issues. But that is not the case. Typically, you've told me this is what you've told me, this is what you've told me that you know kids that that that undergo chemotherapy will. What's the percentage that they will have a secondary issue from the chemotherapy? 95 percent, yeah, and five percent OK, and I just have to brag on my friend for a second. So last time we talked you went to I want to say it was like a state meeting or perhaps something in our capital, or I'm going to botch this, but what I, what I loved was that it was. It was about cancer advocacy and someone was got up and was giving the history of the progression from chemotherapy to now immunotherapy. Adults are receiving these milder treatments that are able to attack and target cancers. And you stood up and what did you say?
Speaker 2:Yeah, they, it was just phenomenal. I just looked at them and I just said I am so glad that adult cancers, especially these top four adult cancers there's plenty of adult cancers who were kind of being ignored as well. I was like I'm so glad that we have left the era of chemotherapy and that we have we're kind of moving into this and moving past even precision medicine and into these. Like I feel like we've landed in the jets since immunotherapy. It's like such an amazing thing. Yet we are still. If you walk behind the door of the hemlock unit, we are still firmly planted in the era of chemotherapy. That is the backbone of treatment for our children are drugs that were developed and FDA approved in like 1959, the year Alaska became a state. I think the most advanced treatment Justin received, which is pretty common for most kids undergoing cancer treatment, was FDA approved in 1986, which is the year the Berlin Wall came down.
Speaker 1:It's unreal. It really is unreal, and to your point. I mean, I, I'm learning from you. Obviously, you went through such a just such a devastating season caring for your child, through this, so you're you're learning about it. Slash, you know your, your whole world's being rocked, and now you know, um, unfortunately, justin passed, and you. You, though, had this burning desire to be like all right, I have all this knowledge and this information about what's going on, and I feel called to do something. Right, yeah, and it's it just really. I'm, I'm so inspired by you and I just love what you're doing, so I'm going to try not to cry, but okay.
Speaker 2:You start crying, I start to like stuff. I know, I know I can't, I can't. Okay, it's actually better it is.
Speaker 1:It is Okay. So I last time I got off the phone with you I was so encouraged so I mean, we've kind of talked about all the just really, really hard stuff. You know these, these kids, you know the stats are worse than we think. Um, pediatric cancer is underfunded. The treatments aren't great. 95% of the time kids are getting um additional. You know, um major issues that they have to deal with, uh, long-term Um, and it feels it feels hard, right, like the system feels broken.
Speaker 1:Um, I wouldn't even know where to start. So where did you start? Because I have to tell you guys, this is not going to be a podcast where you're going to leave just feeling really sad. I really want you, everyone listening, to feel really empowered by some amazing women that have risen above and gotten out of kind of the muck of all this and have been able to just really look down and problem solve. And so can you kind of tell me some of the things in you know that your organization is doing to really progress this, move it forward and, you know, figure this out.
Speaker 2:Yeah. So I think it's funny. Recently I started to realize that the real umbrella of what we're doing is giving voice to the problems, and so I know that sounds kind of weird, it's like that's kind of ambiguous, but really it's empowering and educating families from the moment of diagnosis with the highest quality information. So we're creating educational materials that will help families. In fact, I had an advocate recently reach out and say what about creating an app? I was like, oh yeah, choose your own adventure. I'm sitting in emergency room or whatever. Like how can we make that happen? Right, you know. And really giving voice to those parents, helping them in the moment of like need how do they ask the most important questions that they need to ask? And creating those materials.
Speaker 2:We are saying, if you're an advocate and you want to create systemic change and you feel like you've been kind of screaming in a tunnel on this for a while, whether you've been directly impacted or you just know somebody, or now you're listening to this and you're like I could do something, or you just know somebody, or now you're listening to this and you're like I could do something, we are creating space to help people have a voice for the thing that they want to change. There are literally a million things we could change about pediatric cancer and we truly believe that every single little tiny change adds up to this big systemic change. Everybody's all like for the cure, for the cure, and I'm like, oh, we got a long way to go. I need to be the bearer of bad news, but we can make it incrementally better, a little bit at a time, which is what incrementally means, I guess.
Speaker 2:So the other thing is we found that scientists and others that have been in academia doing this work for a long time are frustrated because in, like the adult oncology world, pharmaceutical companies invest a lot of money into developing their drugs.
Speaker 2:Well, in pediatric cancer, that's all happening in our universities and they need funded, and they need little bits of funding, and they also need somebody to scream for them. Please change this law, please change this regulation, please help us get creative about how we get our research actually over the finish line in new treatments for kids. How do we do that? And so we've become coalition builders, bringing people together, and I mean I just got an email this morning being asked to go sit in some meetings at the FDA to bring voice to these things. So I think what we, you know, it's really easy to say, okay, if you give me $100 for my nonprofit, I will be able to do, make a, you know, provide family financial need or whatever, which is really important. We don't do that, yeah, but what we do is bring about systemic change by bringing people together and bringing voice to the problems.
Speaker 1:So I love that. I mean, you just think about you are, you are becoming the person that you needed and sitting in the hospital waiting room, you know, or providing the advocacy, the information that you needed. That was, you know, so hard to figure out, you know, and so I love that you're kind of going back to think what would have been helpful for me to know, and then the whole idea around the, just the processes behind how the research happens, how it's funded, and all the ins and outs of it. It's no one would understand it until they're in the room or they're talking to these people directly. So that's what I love that you have. You have gone to meet a lot of these like scientists and researchers, right.
Speaker 2:Yeah, and actually a lot of our advocates too. Researchers, right, yeah, and actually a lot of our advocates too. We were building work groups within our nonprofit for people who've been impacted by these things so that we can a lot of them have great ideas, but they've been stuck, Yep, and we've been sticking these things Like. We've got a family that really wants to bring about genetic testing options at the time of diagnosis for certain types of cancer. We're getting them in the room with the people and helping them make the changes. We're talking at the highest levels of change and that's exciting.
Speaker 2:I had a mom contact me this morning and say, oh my gosh, I just got invited to go to speak on behalf of the scientist who has a possible funder for a huge clinical trial. Will you help me walk through how I can be the best advocate in that moment? And I'm like, of course, that's what we're doing, and so we're really kind of creating a more savvy advocate and empowering them to go out and make also these systemic changes. We could never make all the changes. We have to help others be able to use their voice.
Speaker 1:Yes, I love that. I love how you said unsticking people. You know, and you're like you're screaming in a tunnel. You know, if a listener feels like that they have been, you know, they've been screaming in a tunnel about this topic. I would really encourage you to reach out to Robin, um, because I think she can unstick you, like, get you moving, and I mean that, like you said, the power has to come from getting everyone who's passionate about this. And and obviously you know, you know I haven't been directly impacted yet. You know, so far in my lifetime, but we've talked about the fact that you need more advocates that are on the. I guess we're on the outside right now. We haven't been through it, experienced it, and so we have had some conversations about that too. So if you're a listener that has not been directly impacted, I guess you know what I would say is and I've talked to Robin about this I'm like there is this kind of feeling like you can't speak on behalf of the community because you're not in it.
Speaker 1:But I think that I've been given permission to speak upon it and they want me to, they want us to, they want us to take what we're learning, because we're not in it, we're not in the mud, we're like outside of. We could have energy and we have platforms and we have the ability to talk about it and we just need to share.
Speaker 2:You know, we need to share what's actually going on because this is so important, and so, yes, there is incredible inequity in this, and you talked about the fact that I'm trying to give somebody else what I needed at the time of my child's moment of diagnosis.
Speaker 2:Well, the families that have been impacted by this are trying to give the world what the world needs at their moment, which is a better treatment.
Speaker 2:This is what I can't tell you. How many times I've been in a room with families that I mean their child has died from the disease, or they're particularly those families who are like, listen, I don't have anything else to gain from this, but I gotta tell you that if I could go back five years ago or 10 years ago, I really wish that I had been involved in making this better for the world, because you can't fix lack of treatment once you're in the middle of it, and the fact that our kids are just so disenfranchised from the medical system as a result of the fact that they don't vote or whatever it is, it's just, it's not okay. So I think that from the front end, it's sort of like yeah, we want to give people what they need at the moment of diagnosis, how to give them the tools to make decisions, but then, bigger, we're here trying to make it so that and you don't want to use like fear mongering, oh, gosh well what will your kid?
Speaker 2:I mean that's just crazy, yeah, but like I really wish I could turn back 10 years and have been more involved in making this better, absolutely.
Speaker 1:Absolutely. I mean, we are all going to be directly or indirectly impacted by it and it's unfortunate. And I think the more we educate ourselves on the situation, what is actually going on, and then we can align ourselves with partners like you guys that are actually in the trenches, like doing the good work, and align ourselves with these kinds of advocacy organizations, the world will be a better place. So I felt such a need to share this message with any anyone that's listening today. Um, because this has been such a, you know, eye opening. Um, you know experience, getting to know Robin and you know just this walking alongside of this terrible, um, you know disease with her and her family, and then just.
Speaker 1:But I had to share the positivity of, like what she's doing and I get so excited because, my goodness, you guys are super women, and I mean Amy and your whole staff. It's, it's incredibly inspiring. Guys, if you want to surround yourselves with some amazing women doing amazing things, please like and follow and share their foundation page, donate, get involved, do all the things, guys, because they need your voice. Whether or not you have been directly impacted or not, they need your voice. So that's what I would say. Any parting words, robin on anything else that you would share with someone.
Speaker 2:I would just say that community is such an amazing thing, yeah, and that this is a particularly amazing community and we're just incredibly grateful that people would be taking the time to listen. And I think anybody can use the gifts that they have, the skills that they have, to make a difference in the world. And even if you think your gifts or your talents aren't specifically aligned with this, I would beg to differ, because we nonprofits are just businesses that don't pay certain kinds of taxes. We need bookkeepers, we need board members, we need people who like to plan events and send thank you notes and all kinds of things. So if you feel compelled to make a difference, I promise you have a skill that we could use. I love it.
Speaker 1:I love it. Yeah, I've done a little bit of social media posting. For Elevate. I hosted a small fundraiser and it was so easy and they made it so easy. They gave me all the assets and I could post about it. They even gave me the stats to talk about. So if you feel intimidated, like you can't remember all the stats that we spouted off in the beginning, no problem, they have talking points. So, guys, please connect with them. Fabulous organization, nonprofit and cause. And Robin, again, I just really appreciate your time today I know you're busy or everyone to get involved and follow along on the Elevate journey. Thank you, thank you.
