Hello there. Welcome to the Healthy Enterprise. If you're a return listener, thank you for coming back. And if you're new to the show, welcome. My guest today is Raymond Rodriguez Torres.
Heath Fletcher:He's the president and CEO at ALC Home Health. He is a TEDx speaker and a best selling author. He's also a United States Coast Guard captain, and he is an unpaid volunteer chairman of Live Like Bella, an organization he and his wife started in memory of their daughter, Bella, who passed away from cancer at the tender age of 10. Their foundation has rated millions for childhood cancer research and serves families with children battling cancer across The US and in 38 countries. I look forward to this conversation.
Heath Fletcher:Let's get started. Raymond, thank you very much for joining me today on this episode. I'm looking forward to hearing your story with the Live Like Bella Foundation and learning also more about your professional experience in this in the health care industry. So, yeah, why don't you introduce yourself to the listeners and and tell us your story?
Raymond Rodriguez-Torres:Well, it's wonderful to join you today. And, you know, for me, it's a great privilege to be able to share my experiences, which combined with the passion of my life have led to where I am today, if you would. And I think that that's a common thing for all of us. Right? We try to balance our professional and personal lives the best way they can, and they interweave, and I'm no exception to that.
Raymond Rodriguez-Torres:So I professionally spent more than twenty years in pharma. I worked for Hoffman LaRoche, Sanofi Aventis. I worked for a variety of different other pharma companies and launched many, many different drugs, particularly in the area of cancer. And currently, I'm the CEO of a company called ALC Home Health, celebrates its twentieth year providing home care services to children and adults throughout South Florida, which we're very proud of. But at the same time, you know, how my professional life and my personal life came together in a very unique way was in 2007 when my then four year old daughter suddenly became paralyzed without warning overnight.
Raymond Rodriguez-Torres:And she was diagnosed with a very aggressive form of childhood cancer called rhabdomyosarcoma. She was found to have a massive tumor in her spine, which was the cause of the paralysis. And in addition to that, she was found to have nine cancerous tumors throughout her body at diagnosis. Her prognosis at the time confirmed by experts around the world was that she would never walk again and that her life expectancy was a matter of weeks to months. And I can assure you and and all those that are listening that there is nothing as a father that can prepare you for words such as those.
Raymond Rodriguez-Torres:No. And yet as challenging as that diagnosis was and as accurate as it was, incredibly with extraordinary medicine and with some help from above, Bella regained the ability to walk, run, and jump. She didn't live a few weeks or a few months. Instead, she ball she battled valiantly for six years. And Wow.
Raymond Rodriguez-Torres:In the process, started a movement to live like Bella, which for Bella meant to serve others. And so on the night that she went to heaven at the age of 10, amazingly, LeBron James and Dwayne Wade of the Miami Heat at the time wrote hashtag live like Bella on their shoes during the NBA finals, and it went viral. That's when my that's when my wife and I decided to do what Bella would have wished, and that was to help her friends who were the other children battling cancer. And so it was then that we founded the Live Like Bella Childhood Cancer Foundation. And today, Like Bella has surpassed $40,000,000 in funding for childhood cancer research.
Raymond Rodriguez-Torres:And in addition to that, provides assistance to families that have children undergoing treatment or have lost a child to cancer across The United States and in 38 countries around the world.
Heath Fletcher:Astounding. I mean, that, I mean, crushing news for any parent. I mean, every any parent is is devastated by that situation even thinking about it. So but for it to you know, I watched the video on the website, and Bella really did have a spirit of helping others. You could tell with the way she communicated with the camera, and and she really had a heart to help, didn't she?
Raymond Rodriguez-Torres:She did. And I'll tell you, you know, sometimes there's so there's so many so few things in life that we truly control. You know, before Bella suddenly became paralyzed and diagnosed with cancer, she was born with developmental delays because she had low oxygen to her brain when she was born. And so that led to a series of the developmental delays that revealed themselves later. And during the early part of her childhood, my wife and I struggled immensely like any young parents because we so desperately wanted a normal typical child.
Raymond Rodriguez-Torres:So we knew what it was like to go to birthday parties and be marginalized and be made fun of and not be invited to certain play dates. And we even had instances, Heath, where we would be out to dinner at restaurants and because Bella's delays were primarily her ability in speech and comprehension, she would moan in trying to articulate. And we would have people at restaurants come up and say to us, your daughter's disturbing our meal. You you need to be better parents. And yet, what was once such a challenge, were Bella's developmental delays, later became a hidden blessing in the fact that Bella could never fully comprehend the severity of her illness.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:Bella was never fearful. She was joyful, and she cared more about her friends who ended the friends of her life ended up being other children in the hospital over the course of six years until she passed away. And so it became a gift because Bella never asked me, daddy, am I going to die? She never asked me, daddy, why do I have to do these horrible things that you bring me to for the course of six years? And she had endless rounds of radiation and chemotherapy, and her abdomen and her vertebrae and her cranium open.
Raymond Rodriguez-Torres:She was joyful. She was fearless, and she cared more about others. And so to live like Bella was the way that she lived her life. It was an example for us, and it means to serve others.
Heath Fletcher:Wow. What a story. I it's just it's, you know, it's hard to imagine, obviously, and no one and only those that have lived it can really relate to what you and your family went through for all that. I mean, yeah, I mean, you were also in the middle of a professional career as well. I mean, so that, you know, when, you know, this the this is when life happens on us.
Heath Fletcher:Right? How did that impact you professionally? Did you have to park your professional life for the time being, or did you have to forge ahead and and and keep going while all this was going on?
Raymond Rodriguez-Torres:Well, I think you go in stages. Right? Yeah. Initially, you you everything stops when you receive a diagnosis of that magnitude. And I think something is very true is that it is far worse to have your child suffer than you suffer yourself.
Raymond Rodriguez-Torres:Right? So and it's also far more joyful to see your children succeed than than your own succeed.
Heath Fletcher:Absolutely. Yeah.
Raymond Rodriguez-Torres:So I think at first, you know, Heath yeah. You know, the brakes are on. How do I navigate this? Bella was originally straight to go to hospice at four years old, but we insisted to at least try something. So she was put on a 54 protocol.
Raymond Rodriguez-Torres:So at that point, you have to look at your life and say, okay, for the next year, we're going to be in and out of the hospital continuously. How do I balance professionally? What can I do to be effective? And at first, it seems unsurmountable. But it's it's in moments of crisis I found that we find strength we didn't know we had.
Raymond Rodriguez-Torres:Right. And at the same time, that I find that the world is comprised far more of of good people than otherwise. Yes. Then the nightly news potentially would help.
Heath Fletcher:Yes. I agree with that too. Yes.
Raymond Rodriguez-Torres:And so, you know, I was supported by extraordinary colleagues that stepped in to help me, collaborate with me, help me manage. At the time, I was the general manager for the Southeast for Hoffman LaRoche and Genentech. So it was a massive portfolio of medication throughout some of the largest medical centers throughout the Southeast US, Puerto Rico and The Virgin Islands. A lot of work, a lot of travel. And even my clients, I'll never forget at one point, we were doing business reviews with our large organized customers.
Raymond Rodriguez-Torres:And I could not travel to have those meetings because Bella was taking proton radiation in Jacksonville, Florida. So we were away from home for several months living in hotels. And incredibly, anytime we had to travel for a long period of time, my colleagues would transfer their Marriott rewards points into my account so that we could stay free of charge. And I'm talking about millions of points because we'd stay for months at hotels, months at a time. Of my colleagues did Wow.
Raymond Rodriguez-Torres:But my clients, on their own expense, would fly in to do those reviews because it was one of the expectations of my job. And we would do the reviews in the waiting room while Bella was getting radiation and chemo. So I I've I've been able to see a side of humanity that is very fulfilling. And I think that in those moments of professional and personal crisis, if we're able to reach out to people with sincerity, I was surprised at how wonderful people could be, how open hearts I found, even with customers making exceptions for me, which is we wouldn't immediately think they would.
Heath Fletcher:Did you find I mean, it's it's it's difficult to ask for that for that help, isn't it? It's it's difficult to ask for that support. Did you have to ask or did it just come free will from people? They just do they just pour it on you? I mean, it is I mean, we whenever anybody's in this tough situation, it's it is difficult to say, I you know what?
Heath Fletcher:I can't cope with this. It's and does it?
Raymond Rodriguez-Torres:I think it was a combination. Yeah. But no one said no.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:And and that is what was very surprising and very beautiful. You know? Today, you know, when I see Live Like Bella as an entity around the world and people providing support, whether it's by donation, whether it's by volunteering, whether by, you know, spreading awareness online of childhood cancer and things of that nature, it's just incredibly humbling to see how, number one, people do come together. Mhmm. I think what binds us together is stronger than what keeps us apart.
Raymond Rodriguez-Torres:And even more so that a little girl who whose life was so seemingly insignificant on the surface or society would make us think, little girl who could barely speak, yet was so profound and delivered such a message that continues to impact now twelve years later in a remarkable and extraordinary way.
Heath Fletcher:Yeah. So tell us now what Live Like Bella is doing because it it it's doing making it's accomplishing some amazing things out there. I mean, it is it is supporting other families going through and living through this experience too with financial support and and other things. So tell us more about what Live Like Bella is doing.
Raymond Rodriguez-Torres:So Live Like Bella has three lines of service, if you will. The first is funding and advocating for pediatric cancer research. And so I'll I'll begin there.
Heath Fletcher:Okay.
Raymond Rodriguez-Torres:Live Like Bella has funded now over 70 clinical trials that are currently ongoing right now, many of which are providing some extraordinary breakthroughs that have made global global headlines, which we're very excited about. And the way we do that is, number one, obviously, with our own funds, but at the same time, one of the most innovative things that Live Like Bella was able to do, which is now become an example for other states around the country and even for other countries. Six years ago, we had the idea that we wanted to use state government funding to be able to fund pediatric cancer research. We realized that the state of Florida was really not doing anything to fund childhood cancer research, and that mimics the national perspective. Nationally, less than 4% of the National Cancer Institute's budget goes to pediatric oncology.
Raymond Rodriguez-Torres:And so we were able to make an arrangement again with extraordinary legislators and the governor, where we all came together and said, listen, we want to fund pediatric cancer research. We don't want to add an additional taxpayer burden here. And so what we found was a happy medium that's been very successful is that let's use the cigarette tax revenue from the state of Florida to be able to fund pediatric cancer research. And so the Live Like Bella research initiative within the state of Florida was born. And each year, there's $5,300,000 that are allocated from the sale of cigarettes in the state of Florida that can only be used by way of the Live Like Bella research initiative for research funding in Florida.
Heath Fletcher:Wow. That's amazing.
Raymond Rodriguez-Torres:And that Wow. He has has accelerated things enormously. Yeah. It has not added a new taxpayer burden to the citizens of Florida. And it's a way simply of saying, look, we wish you wouldn't smoke, but if you're gonna smoke, why not take some of this that's not good for you and use it for the benefit of children that
Heath Fletcher:are sick. Absolutely. Yeah.
Raymond Rodriguez-Torres:And so we are trying to model that or or show that as an example to the rest of the country because we feel they can follow the same the same path. So research is the first line of service. The second line of service of Live Like Bella has to do with what we call in treatment support. And so in treatment support is the we define it as when your child is diagnosed, it doesn't matter what you do professionally. I was an executive and I was a vice president of publicly traded pharmaceutical companies.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:You are not financially prepared for what a diagnosis of a child with cancer means. No. And in most cases, at least one parent, if it's a two parent household, immediately has to stop working. You cannot drop your four year old off at the hospital to get chemo and go to the office for a few hours. No.
Raymond Rodriguez-Torres:It requires immediate and continuous care. The side effects of chemotherapy in adults and particularly in children are horrifying. And so there has to be a parent there and oftentimes too.
Heath Fletcher:Yeah.
Raymond Rodriguez-Torres:And so what in treatment support for LiveLibelamines, we work with the social workers and they're really the frontline. They they understand what families are the ones that are actually in need. Live Like Bella has a proprietary portal that has been created by an incredible group of brilliant software engineers, all pro bono, And social workers from hospitals and parents log in to the Live Like Bella portal. They enter all of their information, and they're able to upload their bills, whether it be mortgage, electric, car, hospital co pay, pharmacy co pay. They upload all of that information, and Live Like Bella pays those bills directly.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:In the event that a family requires some sort of of payment ability, whether it be at a store or for groceries and things of that nature. Live Like Bella has an arrangement with Walmart, where we have special Live Like Bella Walmart cards that can be used as gift cards, and they will pay for everything except for alcohol, tobacco, and firearms. And so that is in treatment support where we don't give money directly to families, but we pay their bills directly.
Heath Fletcher:Right. Right.
Raymond Rodriguez-Torres:And that's also a very important thing, Heath, in and I think it's very unique. Because oftentimes in these cases, if you give a family money directly, you are inadvertently, with good intention, causing them now a tax problem.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:Because when they go to do their taxes the following year, they have to claim the fact that they received this assistance.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:So in this instance, we don't do that. We pay their bills directly in the system in that fashion. And the last line of service of the three is what we call memorial support. And so if a child should pass away like Bella, Live Like Bella pays for the headstones, the burials, the funerals of children that die of cancer anywhere in the world. And we found that to be extremely important because, obviously, we lived it.
Raymond Rodriguez-Torres:And, you know, for my wife and I, number one, it was incredibly expensive in that moment. Nobody can be prepared financially for that, let alone the emotional toll.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:But all of a sudden, you find yourself in a situation where after you've been through a war with your child going through chemo and radiation, Now you have to bury your child, and it's expensive. The real estate of of of cemetery is very expensive, casket, etcetera.
Heath Fletcher:Everything. Yeah.
Raymond Rodriguez-Torres:Everything. And the decisions that you have to make are grueling. In our case, I had to immediately purchase a cemetery plot for my wife, for Bella, for myself, and choose not to get one for our younger daughter, Rayna, because we presume that eventually she will marry and wanna be buried with her own family. But nobody's prepared to make these decisions all in a fail state.
Heath Fletcher:No one's thinking of that right now at this time in your life. No.
Raymond Rodriguez-Torres:And frankly, there is no payment plan for something like this because we can do that so that our children don't have to worry about it. But when your child does, it doesn't work in the inverse. You have to pay it right away. And so my wife was the one who actually founded Live Like Bella, and the reason why this came and this idea is because it was heartbreaking for us to see families who had become friends. Right?
Raymond Rodriguez-Torres:Because circumstances and where you spend your time will dictate who you're friends with.
Heath Fletcher:Absolutely. Most
Raymond Rodriguez-Torres:of our friends for the last ten years were other families whose children did pass away. It was heartbreaking for us to see that they had buried their child, but they could not afford a proper headstone. Now, Heath, when I go, a a pine box will be fine. Preemaid me, no problem. But when it's your child, it's different.
Heath Fletcher:Yeah.
Raymond Rodriguez-Torres:And I visit Bella's gravesite every ten days or so. And tomorrow, on the May 28, is her twelfth year anniversary that she went to heaven. And so I we will again be there tomorrow, and we will be remembering her, and we will be releasing butterflies.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:And it it is incredibly heartbreaking to see families not be able to have the ability to honor their children in the proper fashion. And so I'll I'll cap off the third line of service with the following story. When we were starting Live Like Bella out of our garage and we started offering memorial support, I will never forget, we received a call on a Saturday. And when Live Like Bella started, there was a very big viral component to it because of what had happened with LeBron James and Dwayne Wade. The president of The United States flew to Miami and met with us the week after Bella passed away.
Raymond Rodriguez-Torres:It was it was an extraordinary thing. And Wow. At that time, and even now, when you call it like Bella, the phone rings on redundancy. It rings from one person to another to another until maybe even a volunteer that's not even physically located in Florida answers the phone. And on the weekends, my wife and I used to put ourselves higher in the call queue to give the volunteers some reprieve.
Heath Fletcher:Mhmm.
Raymond Rodriguez-Torres:And I'll never forget a mother calling from the Raleigh, North Carolina area. She had a five year old son who had died of a brain tumor after eight months of a fight, and she was calling inconsolably from the parking lot of a cemetery because the family was told to be there at 03:00 that afternoon on Saturday. When they arrived, they were informed that they had an $1,800 balance still pending on their invoice. And if that balance wasn't paid, unfortunately, they would return the boy's body back to the city of Morgan. He would not be buried.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:And so in that moment, when that mother was speaking to my wife, two things Number one, when my wife speaks to a mother like this, it's not a volunteer saying I could imagine how you feel. Well, my wife knows exactly how that woman feels. And she said, please give me the number immediately to the office of the cemetery. She called and said, listen, we are Live Like Bella. We're a nonprofit in Miami, Florida.
Raymond Rodriguez-Torres:We're not gonna pay you the $1,800. We're gonna pay you $1,500, and we're gonna pay you right now over the phone. And you're gonna stop torturing that family, and you're gonna bury that boy right now. And so we came to realize that developing relationships with cemetery and funeral homes became critically important so that Live Like Bella could provide that closure for those families that needed it.
Heath Fletcher:Incredible. And this is available outside of Florida. It's it's
Raymond Rodriguez-Torres:And now now everywhere. Right? Yeah. Yeah. Now Live Like Bella.
Raymond Rodriguez-Torres:So my wife and I have always been volunteers. We've never been paid for any of this. But now, Live Like Bella no longer runs out of our garage. It runs out of Central Miami in an area called Coral Gables. We have a wonderful CEO and a team of nine full time people that do all of these things in 38 countries around the world and across The United States.
Heath Fletcher:Amazing. Amazing. Wow. It is it's hard to fathom in the what you've been through, but to hear the amazing growth and and what you provide other people who have gone through this is pretty inspiring. Like, I mean, it's to go from where you were to where this is now.
Heath Fletcher:I mean, it's you've taken a tremendous amount of heartache and pain and and turmoil, and you've really, really turned it. And and in in the name of Bella, which is really a beautiful name, live like Bella. Wow. I just you know, for many others, like, thank you for doing this. It's it's it's incredible that you were able to pull that passion out of that experience and and make this a real organization.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:Well, I I thank you, Ethan. I'm grateful to so many that have stood shoulder to shoulder with us and and believe that we could do something. You know? And going back to the outset of what we were talking about it, the combination of my professional experience and so many other factors, think, have led to a lot of things that we are experiencing now in our lives. Ironically, my master's degree is in nonprofit leadership.
Raymond Rodriguez-Torres:I worked in pharmaceutical industry for more than twenty years launching cancer drugs. And so when it comes to advancing research, it it has always been in my wheelhouse. My best friend in the world is my father. He just turned 99 years of age. He's a pediatric cardiologist.
Raymond Rodriguez-Torres:And so, you know, launching a nonprofit entity with a focus on research and helping children is you could say it's been in my blood. I would have never expected in my life as I was projecting that I would face the worst human experience imaginable, which is burying my own child. And as difficult as that is, I choose to believe that her life was a gift. I choose to believe that I will see her again. And I am a father that is member of a club that I would never want anyone to be a part of.
Raymond Rodriguez-Torres:I I held my little girl in her first breath on earth and in her last. And I look at it as a gift. And in memory of what she taught me of how to live like Bella joyfully and fearlessly, well, then that's what I have to do to help her friends now. And my encouragement for all those that might be going through a challenge, whether it's at work or at home, is to live like Bella. I think that oftentimes when tragedy strikes, if we're capable potentially of looking at the people that have been purposely in our lives, like my colleagues that helped me in so many ways, the skills and talents that are we've been uniquely given, then we can face that tragedy head on and choose to overcome and choose to live like Bella.
Raymond Rodriguez-Torres:But above all, to look at leading in our lives in serving others. I found in great irony, Keith, that in the moments of greatest difficulty as we were going through this, if I served others, that brought purpose, that brought strength, and that brought peace in moments where there was no sense to what we were enduring.
Heath Fletcher:You often hear that questioning why why is this happening and and and finding a purpose. Like you say, we'll actually answer that question. Right?
Raymond Rodriguez-Torres:If you can't
Heath Fletcher:find a purpose and you'll you know, the the question why will will haunt you forever until you find a why and and you found your why, which is pretty incredible. You know, you've you're if we can take a second to talk, you've you've spent a lot of time in in cancer research. There are a lot of stats and numbers and data around the increase in in cancer in children. You know, what let's talk about that for a minute. What and and like you said, there there wasn't a lot of support at the state level or national level.
Heath Fletcher:Is that changing now that some of the data that is saying, hey. Look. Pay attention. This is what's happening. Is there is there a change happening?
Raymond Rodriguez-Torres:So that's a very good question. And and I I really am grateful for the opportunity to have this discussion with you, and I and I pray that this has seen far and wide.
Heath Fletcher:Yeah. Me too.
Raymond Rodriguez-Torres:So I was invited in September as part of a roundtable of 20 thought leader experts on the topic of pediatric cancer to the White House last year. And as we were discussing a variety of state initiatives, there was a mother who was explaining that in California, her son had been diagnosed and passed away of a brain tumor. And that because of his brain tumor tumor being as rare as it was, that Medi Cal wouldn't was not providing any treatment or covering any treatment for that child. They immediately transition that patient to hospice. That is pretty pervasive, not just in California, but in other states as well, because the expense related to the survivability of that tumor is wouldn't make sense on paper.
Raymond Rodriguez-Torres:Now this mother obviously was very affected by this. She didn't lose her son. She built a coalition of people that were writing the legislature. I was just listening to this. And the response that she received was, madam, we're terribly sorry for your loss, but children rarely die of this condition, and therefore, it cannot be a priority for us.
Raymond Rodriguez-Torres:And as soon as she said that, I stood up and I said, in Florida, have an entirely different arrangement, and I kind of explained some of the things that we've already gone here. And I said, but there is a critical factor that you have to get through first. And I'll describe it in the following way. When my wife, Shauna, and I received Bella's death certificate and the cause of death was listed as rhabdomyosarcoma, in a very unusual way, we high fived each other. And the reason we did is because Bella was counted.
Raymond Rodriguez-Torres:What we had learned in Florida prior to live like Bella and in many other states is that when children died because of cancer, the cause of death that was being listed on their death certificate was sepsis, kidney failure, heart failure, pneumonia, and a series of other causes.
Heath Fletcher:No way.
Raymond Rodriguez-Torres:And so the problem is that the worst consequence of childhood cancer is death by childhood cancer. If we are not capturing those deaths as being due to cancer, yes, heart failure, but what caused that heart to fail?
Heath Fletcher:Right.
Raymond Rodriguez-Torres:Right? Right. If if we're not capturing that correctly, then you do not have data to substantiate how many children are dying of the number one disease killer of children. And therefore, madam, I said, is the reason why you're going to receive letters such as those because we need to have data to substantiate them. In Florida, the moment that we substantiated that with the medical examiners and with the state, it became a very collaborative effort as you can see.
Heath Fletcher:Right. So you have
Raymond Rodriguez-Torres:to start there. I don't know if that answers your question, but we need to begin there because awareness is critical, but capturing of data is critical as well.
Heath Fletcher:Absolutely. I mean, data tells us everything. If you don't have and if you don't have accurate data I mean, they have data, but they're telling this they're they're they're providing the wrong facts. Right? They're not, like you said.
Heath Fletcher:And and what you've been doing at you've been doing this at policy level. Right? All of these implementations. Like, how how did you approach that? You know, was there did you have some pushback, a little bit of challenge in that?
Heath Fletcher:No. Really.
Raymond Rodriguez-Torres:And I can tell you that, you know, whether republican or democrat, we're all human. Many of us are parents. Yeah. And I think it's just taking a systematic approach. And then certainly, there's a lot of emotional charge.
Heath Fletcher:Mhmm.
Raymond Rodriguez-Torres:But the ability to be able to present this in a sensible way, I I've I've never had an experience where someone has said, Raymond, you know, what what you guys are bringing up here doesn't make sense. It's it's approaching it like anything else. So you cannot understand the size and scope of a problem until you understand what is actually happening with the data, you know, quantifiable data. And furthermore, you cannot allocate resources to correct something unless you know the size and scope of the issue.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:And so I think that being able to do that is is critical. We've taken that approach in Florida. We're we're spreading the gospel, if you would, of how to do this. Just last week, I had my first call with the California legislature on capturing the data correctly so that they can consider the same thing. And California is important because I was invited earlier this year to give some lectures at Stanford, and they they need help.
Raymond Rodriguez-Torres:They need help. And a lot of innovation does come from California that would be a great benefit to humanity, in particular children fighting cancer. So the the more the more the state can do to support the efforts there of the brilliant minds that reside in California and those academic medical centers, the better the world will be. But that is also true in, unfortunately, 24 states in the country still don't have childhood cancer listed a priority. And I would bet to say it's because the data is being incorrectly reported or captured.
Heath Fletcher:Yeah. I think you identified it. Major hole in the in the system there for sure. I mean, the systems like you talk about are this they were designed a long time ago. And, you know, it's it you know, you when I speak to many people in the health care, there are a lot of systems that have outlived their worth and their value because it's no longer in alignment with today's society.
Heath Fletcher:And what's happening today, which exactly what you're talking about is the data. And that innovation is is is really turning the turning the tables now and helping to shed light on some of these issues and some of these outdated systems and processes that have, you know, been rooted in in you know, this is how we do it. But there are new ways it's finding new ways to do things and pushing that envelope with with as much passion and purpose as possible.
Raymond Rodriguez-Torres:Yeah. Absolutely.
Heath Fletcher:Do you find so on the research side of cancer, are you finding more with with some of the new epidemiology and and precision medicine and and that kind of research and development? Is there are they finding new solutions for for cancer for children and youth? And and are they are they making headway from your perspectives?
Raymond Rodriguez-Torres:Absolutely. So I think in general, I would say as follows. Right? You know, being an ultra orphan population, because although it's the number one disease killer of children, thank god it's a small population of human beings. However, it is deadly.
Raymond Rodriguez-Torres:It is lethal. It's difficult to look at development of drugs for children with cancer because there's there's you know, it's a small market.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:Having come from industry and specifically the cancer industry that I did, if we were gonna start a pharmaceutical company right now, you and I, we wouldn't do it in pediatric oncology. You have very few patients or few cost potential customers. Right. And so I believe that from that perspective, one of the messages that at least Live Like Bella has been delivering or I've been delivering to my old colleagues in pharma and in biotech has been, let's make childhood cancer a chronic treatable illness. If we do that, then you have when you look at the rates of unfortunate lost years of life, when an adult dies of cancer, the average loss in years is roughly twenty.
Raymond Rodriguez-Torres:When a child dies of cancer, the average loss in years is above sixty seven.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:Let's find a way to keep the children alive, and you have a customer taking your product for almost seventy years. That that makes financial sense far more than than treating it as an acute illness. On the other side,
Heath Fletcher:there
Raymond Rodriguez-Torres:have been some breakthroughs, particularly one of the studies that Live Like Bella funded. It was a collaboration between Florida International University and Nicholas Children's Hospital, ironically, in our own backyard. So Live Like Bella's funding research everywhere. This this one happened to be here. And the beauty of this study was the simplicity of it.
Raymond Rodriguez-Torres:And so FIU developed a technology where they could do three things. They could do genetic screening, they could do molecular testing on the tumor, and they could do drug screening using hundreds upon hundreds of FDA approved and only FDA approved combined drugs on tissue samples from the patient.
Heath Fletcher:Oh.
Raymond Rodriguez-Torres:All three of those points, the genetic, the molecular, and the drug screening would then be analyzed by AI to spit out a new treatment protocol for the patient. And amazingly, in that study that originally started with twenty five children that were being treated at Nicholas Children's Hospital, all of them were refractory, failed, relapsed, no more options. Eighty three percent of the children in that study that were in that condition because of this found disease free progression, which was extraordinary. Eighty three percent of the disease free survivability. And more so, the AI in all of these children spit out combinations of FDA approved drugs that are extremely unconventional.
Raymond Rodriguez-Torres:I'm talking about in cases of children with stage four rhabdomyosarcoma like my daughter Bella, now being two and a half years in remission with hair and back to school, using combinations of drugs such as antihistamines, prostate cancer drugs that would never be given to females, let alone children, and Aleve. And so
Heath Fletcher:Over the counter antihistamines. Wow.
Raymond Rodriguez-Torres:Correct.
Heath Fletcher:Wow.
Raymond Rodriguez-Torres:Incredible. And so yes. I mean, this is a huge breakthrough right now that there's children from all over the country enrolling in this study, which I'm very pleased with.
Heath Fletcher:That's exciting.
Raymond Rodriguez-Torres:And AI accelerated that very significantly. And, you know, my goal from a standpoint of research, Keith, the most difficult time is not when they tell you your child has cancer. The most difficult time is that after you've done all you can, there's another meeting, and they tell you, we've done all we can. Please take your child home to die. That is the darkest moment.
Raymond Rodriguez-Torres:That is the most difficult time. And from a standpoint of research, when we founded Live Like Bella, it was my focus and that of my wife to focus on that terrible moment, to bring light to that terrible moment to say, we're going to give you another shot on goal. One more shot. Because which one of us that are parents would have put our arm through a fire to save our child? And so that's why that study has been so profound as well as all of them.
Raymond Rodriguez-Torres:But that one in particular, because those are children that had no more recourse. Those are children that were going to hospice. And many of those children at Live Like Bella events, I see them running around, and I know who they are, and I'm extraordinarily grateful. And it also helps me know that Bella's right there with us.
Heath Fletcher:Yeah. She's she's cheering you on from up there, right, to to say, yeah. This is where we need to go. This is what we need to do. Well and then on the other spectrum, you're actually also helping with seniors too with through ALC, right, with, with home health ALC home health, which is a growing, community of of people in the health care system, isn't it?
Heath Fletcher:And and Yeah. What's your perspective on that? Is it is it ready for what's to come? Because, I mean, we've got a really large aging demographic. Are you know, are are are we prepared for this?
Raymond Rodriguez-Torres:So I believe we are. You know, one of the great challenges for home health, one of the great benefits is the cost of treating people. The preference of treating people at home unequivocally is significantly better than in hospital for sure. Today, we can provide a great deal of services including chemotherapy, including x rays, including ultrasounds, all of these things at home, physical therapy, occupational speech, wounds of all type. One of the challenges is is is reimbursement models continue to cut the ever shrinking health care dollar.
Raymond Rodriguez-Torres:And so we have to compete when we're hiring nurses. They you know, we get get paid more at at a inpatient hospital facility.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:But it many of them work three days a week, so they will moonlight with agencies like ours. They have flexibility in their schedule, so they can pick up several cases in their community, and they can care for the patients that many of them, they might even be seeing in the hospital, and then later it's the same nurse that cares for that patient in the home. Right. The same is true in the in the pediatric space. And and frankly, when we talk about transition of career, that's what kinda help made me make the decision to transition to home health care.
Heath Fletcher:Mhmm.
Raymond Rodriguez-Torres:There was two two major factors to that transition for me. Number one, after Bella passed away or prior to, I took a month off from pharma to get ready for hospice and what was to come. After she passed away, I took another month off to get our family back on track if such a thing existed.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:And after that, I was on a plane for five weeks straight. And I realized that I had done that for twenty plus years, primarily to in great part to keep Bella's health insurance. To keep our health insurance so that Bella could fight cancer and I no longer had that obligation. And so I woke up one morning and I said, can't do this anymore. Also at the same time, Live Like Bella was beginning, and it required my attention.
Raymond Rodriguez-Torres:And so at that time, I made the decision to change careers. But during Bella's journey, she was part of a clinical trial at Memorial Sloan Kettering Cancer Center in New York. And when she finished that clinical trial, her doctor in New York says, you know, when you get back to Miami, she's going to be on a low dose of chemotherapy. One week a month, she'll have to receive the following chemotherapies. She will be immunocompromised, but she'll her hair will grow up grow back slightly, she will be able to attend school, and you can do it in the comfort of your home.
Raymond Rodriguez-Torres:And I said, well, no. That that protocol that you're describing, when she's received that in the past, we have to be admitted to the hospital for the week. He goes, oh, no. No. Here in New York, have hundreds of children that receive chemotherapy.
Raymond Rodriguez-Torres:When you get back home to Miami, find yourself a qualified home health company, and you can do that too. So when we returned home, I asked Bella's doctors, hey. Can we do this? And they said, we can do it, but we've never done it.
Heath Fletcher:Oh, wow.
Raymond Rodriguez-Torres:And so when I stepped into this role now for ALC, certainly, our revenue comes from, you know, the elderly space. But we do a lot of pediatric absolutely pro bono because children like, at that time, Bella, deserve a shot to be able to be at home
Heath Fletcher:Yeah. Which
Raymond Rodriguez-Torres:is much better for them to, you know, picking up a communicable disease in an emergency room or infusion center. Yeah. Be able to do it at home.
Heath Fletcher:Wow. That's really good. Plus, I mean, you're home. You're you're you feel better at home. You're in your comfort of your surroundings and your things and your teddies and whatever else.
Heath Fletcher:So, yeah, that's a that's a way better space to be doing that. How did you like, so so you've done you went through all that pharma work. You are transitioning now through Live Like Bella, now working with ALC. So did you find for yourself as a as a leader, did your skills shifted, or or did you did you carry on? Did you take every from every step, did you learn new ways, new leadership skills, and how did you how did you transition through those major areas and and professional changes in your life?
Raymond Rodriguez-Torres:Well, I I'm I am not one of those people that will say, I am the man I am today because of. I don't think God's done with me, so I'm still learning every single day.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:And, yes, I do think that block by block, piece by piece, you know, I'm composing the story of my life personally and professionally.
Heath Fletcher:Yep.
Raymond Rodriguez-Torres:But I have found that hiring the right people and letting them do their thing is critically important. Someone once told me early in my career, you do nothing by bringing in a stallion and putting them in a paddock. You have to have trust in the people you bring in. If they have the ability, let them let them run.
Heath Fletcher:Right.
Raymond Rodriguez-Torres:And so I've been very blessed and fortunate in that the teams that run ALC and work with me there and the folks that work at Live Like Bella are extraordinary folks. They are passionate. They are focused. They love what they do. And that's important because he at the end of the day, we will all be guilty of spending more time at our jobs than we will even in our own personal lives with our family.
Heath Fletcher:Yeah. Yeah. You're right
Raymond Rodriguez-Torres:about that. What we decide to do professionally should provide a a great deal of fulfillment and purpose. And I always envision folks in the following scenario. If you were invited to a cookout or a barbecue this weekend, somebody came up to you and asked you, hey, what do you do for a living? What's your response?
Raymond Rodriguez-Torres:And and as as as I I ask people, as you think about that, think of the following analogy of the man that was walking down the sidewalk and he sees two bricklayers at a construction site. And he says to the first bricklayer, what are you doing? And he looks up in a moment and says, what does it look like? I'm laying bricks. And he asked the one next to him, what are you doing?
Raymond Rodriguez-Torres:He said, I'm building an orphanage for children. Two very different perspectives.
Heath Fletcher:Yeah. The big picture. Being able to see the big picture. Yeah. Right.
Heath Fletcher:That's very interesting. Yeah. That's that's good. I gotta remember that. And I'm I'm glad you brought up trust too because that that comes up often, you know, talking to, leaders in business is that they've they've had experiences in the past where they didn't trust in other people, and it it quickly broke down, and and and filtered down through the organization.
Heath Fletcher:But those that have embraced trust and are able to actually trust others and and and give them responsibilities and let them do their jobs seems to infuse that right down to the ground floor. Right? And that trust sort of just becomes part of the culture of that company. So
Raymond Rodriguez-Torres:Well, I think that the basis the basis of any human relationship is trust.
Heath Fletcher:Mhmm.
Raymond Rodriguez-Torres:And I think that at the same thing at the same time for leaders, I I I would never ask anyone that works with me to do something that I wouldn't be willing to do myself. I'm the chairman of Live Like Bella. I'm the president and CEO of ALC. I vacuum the carpet. I hand out donuts.
Raymond Rodriguez-Torres:I serve coffee. Right. I do everything that everyone else does there. But when it's time to do the hard stuff, I need you to be standing with me because we're gonna go do the hard stuff.
Heath Fletcher:Yeah. Arm in
Raymond Rodriguez-Torres:arm. Yeah.
Heath Fletcher:Wow. Yep. Yeah. Great advice. Any other nuggets or wisdom that you'd like to pass on to someone who's, you know, walking in your shoes, working towards a career in in the industry.
Heath Fletcher:Any other pieces of advice you'd like to pass on?
Raymond Rodriguez-Torres:I think find find what really fuels your passion. When you when you're at that cookout or that barbecue and somebody asks you, what do you do for a living? Living, think about what your answer is going to be. How are you bettering your community? How are you bettering the world?
Raymond Rodriguez-Torres:I think that will provide a great deal of self fulfillment. And if you have that passion, you will be successful. If the answer is I'm laying bricks, you need to find something else.
Heath Fletcher:Yeah. Yeah. You need to find your purpose in there for sure. Well, Raymond, I really I really enjoyed meeting you and hearing your story and hearing about Bella. And it's been amazing experience for me just learning about everything you've been going through and and what you've achieved now in Bella's name.
Heath Fletcher:And I just wanna thank you for your time today and for joining me on this episode. I know listeners are gonna really be taking a lot away from today. And, yeah, and you're you're you're so open and and sharing and caring with everything you do. So thank you again for sharing that with us.
Raymond Rodriguez-Torres:It's been my pleasure, Heath. Take good care.
Heath Fletcher:Yeah. You too. Wow. Incredibly tragic yet heartwarming and inspiring story, from Raymond. It it's just so difficult for any parent to conceive of a situation like that, and yet it's happening all the time.
Heath Fletcher:Raymond emphasized the importance of serving others during a time of crisis and that finding a purpose can help answer the questions of why adversity occurs and finding fulfillment in work that can lead to a greater success and happiness, which is what he's done through their organization, Live Like Bella. If you'd like to learn more about their organization, visit their website at livelikebella.org. You can also pick up his book, Why Not Me? A true story about a miracle in Miami. It's available on Amazon.
Heath Fletcher:And his TEDx talk, tragedy to triumph, live like Bella, a great watch. So thank you so much for listening to this episode, and stay healthy. And we'll see you again soon.