Healthy Living by Willow Creek Springs
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Healthy Living by Willow Creek Springs
Building Ryan House: From Grief to a Movement for Pediatric Respite and Palliative Care
A rare diagnosis shattered a young family’s plans—and then reshaped a nation’s approach to caring for medically fragile children. We sit down with Jonathan Cotter to chart the path from his son Ryan’s SMA diagnosis and sleepless nights in London to discovering Helen House, the world’s first children’s respite and palliative care home. What began as a desperate search for help became a blueprint for dignity: overnight respite that restores parents, supports siblings, and wraps families in expert, compassionate care—at no cost.
Back in Arizona, the gap was impossible to ignore. The UK had dozens of children’s respite homes; the US had virtually none. Jonathan and his wife turned their grief and grit into Ryan House, a community-based model with 24/7 nursing, child-life specialists, social workers, and chaplaincy that lets parents be parents again—through hospital scares, small victories, and, when needed, end-of-life moments marked by presence, not panic. Ryan lived years beyond predictions, cracking jokes about being “moldy cheese,” and helped open the doors of the very home that would later hold his final breath.
The story doesn’t end there. After Ryan’s death, Jonathan earned an MPH and launched a national coalition—Children’s Respite Homes of America—to tackle the structural barriers that keep families from the care they need. We dig into the policy levers (Medicaid, CMS, licensing), the funding mix beyond philanthropy, and the expanding map of programs: from Oakland and Phoenix to Minneapolis, Chicago, Seattle, and beyond. If you’re a caregiver, clinician, donor, or policymaker, you’ll hear practical steps to bring this model to your city and a reminder that hope isn’t abstract—it’s built, staffed, and sustained.
Subscribe for more stories that blend heart with hard-won solutions, share this with someone who needs it, and visit childrensrespitehomes.org to get involved or find a program near you. Your voice can help bring real rest—and real hope—to families who need both.
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Well, hello, and welcome back to the Healthy Living Podcast. I'm your host, Joe Grumbine, and today we have with us a very special guest. His name is Jonathan Cotter, and we just had a nice little conversation. Um, and he's got a very unique program, a very unique life situation that so many people uh find their way to this show. Uh Jonathan has a son that many years ago was diagnosed with a condition called spinal muscular atrophy as an infant. And um over 17 years, Jonathan and his wife co-founded an organization called Ryan House, and it's one of the few children's respite and palliative care homes in the U.S. And really, I just want to open the door right there because that is something that we were just talking about, is a discussion that really needs to be had. Palliative care, um, respite care and children don't generally end up in the same conversation. Jonathan, welcome to the show. It's great to have you here today.
SPEAKER_00:Joe, wonderful, wonderful uh opportunity. I appreciate the chance to get a chance to talk. This is great.
SPEAKER_01:Absolutely. So you have a very, very unique story. And um, I I always like to give a guest a chance to kind of tell us about how you got here. And why don't you tell us a little bit about that experience raising a son with this condition? And um, you know, it's it seems like a very interesting and important story.
SPEAKER_00:Yeah, I appreciate that. Um, so uh the other thing, you and I discovered we're about the same age, too. So um we kind of have the same general life experiences. In my case, my wife and I um are Arizona family, so I'm I'm talking to you out of Scottsdale, Arizona right now. Um, we've been married for over 33 years. When we got married, uh my career was in marketing. I worked for brands that you know and love. So I started my life at the Dial Corporation on Dial Soap. Um, my wife was a school teacher. We went off to see the world. After a few years of marriage, we moved to Green Bay, Wisconsin, and I worked for Briars Ice Cream. After a couple years, we moved to the Twin Cities and the Pillsbury Company. Wow. Um, and I at that point was a senior marketer. We loved living in the Twin Cities. That's where we had our first son, Ethan, who's now 27 years old. Uh, he's a bassist in the death metal band, so that'll be a story for another day. Uh, and it was in um in Minneapolis that the Pillsbury Doughboy gave us the opportunity to go to London, England and do a job assignment in London. So that's where we went after three years in Minneapolis. We moved to London for three years. Uh, and after landing there, we decided to continue our family. And so our young son Ryan was born, and that's the really the story that we'll talk more about here today. Um, Ryan was our second son, beautiful birth. We were already parents, so we knew about toddlers and diaper changes, and we thought we had this down. Um, and at eight months old, Ryan actually, the the the important thing is that we thought he was a late bloomer. He was a perfect baby looking 10 fingers, 10 toes, perfect apgar score, but something just wasn't right with him. He just didn't have any strength. He wasn't sitting up um unassisted, holding his head up like our other son, who was practically running at 10 months, was doing. And so my parents had come over from Arizona to visit us for the holidays. And my mom held Ryan for the first time, immediately teared up and said, I'm so sorry. Looked at my wife and said, I'm so sorry. And that was the confirmation that, okay, something just is not right here. My mom, you know, I have three sisters. My mom was used to babies, and so that was really the trigger that put us on the road to doctor visits and specialists. And that's when we were given the diagnosis of spinal muscular atrophy, which turns out it's a rare genetic disease. I'm a carrier, my wife is a carrier, and it just the odds play out. Wow. And this was 20 21 years ago. He was born in 2001. Um, and at that time, SMA had no treatments and no cures. Uh, and we were basically told Ryan was eight months old, don't expect him to live to two, and there's nothing you can do about it.
SPEAKER_01:Wow.
SPEAKER_00:So our world was shattered, and we were 11 hours away from the closest family member, all back in Arizona. My wife is from Tucson, Arizona, born and raised. And so it just literally was devastating news to hear. Um, and that's kind of, you know, obviously was grief and how is this happening and what are we going to do about all this stuff? And at that point, Ryan's care really was starting to get much more intensive. We started to, you know, it's called spinal muscular atrophy for a reason. We needed to start to do a lot of physical therapy with Ryan to try and keep his joints loose so they didn't just stiffen up his legs and his arms. He wasn't able to kind of brush his teeth, or or I mean he was only eight months old at this point, but um, he he needed a lot of attention. And he we found ourselves in the hospital quite a bit because he was getting pneumonias. His body wasn't able to get good breaths, so he would get colds more frequently. And so um, the other major point was this was his care became intensive 24 hours a day, seven days a week, which includes the evenings. So, where most of us, when we sleep, we wrestle around a little bit to get comfortable. Ryan couldn't do that. Ryan, you put him on his back, and 45 minutes later or an hour later, he would cry out because he needed to be changed position. So either my wife or I had to go into his bedroom, flip him on his side, 45, try and go back to bed. Um, 45 minutes later, an hour, he'd cry out again. One of us would go to his room, flip him on his other side. And so we always trained ourselves to kind of live on very little sleep, or we were always on guard and always alert, and it just becomes incredibly exhausting.
unknown:Wow.
SPEAKER_00:Plus, you have this um, and and this is I think where you and I all end up talking a lot too, is that this idea that not only was his medical care and his caregiving needs intensive, but you also have this cloud and umbrella over this whole thing, which was really the emotional journey that we now found ourselves on, because there was no treatments and no cures and a life expectation that he won't live to two. And how do you find joy? How do you live life trying to really um deal with all the medical caregiving needs of the day, but also just try and find joy when you're also trying to think about should I be planning for funerals? Should we be planning a death? How do we, and so that's what's called anticipatory grief. And then that really kind of gets into this bigger idea of palliative care support, which is really just beautiful and wonderful and helping families and people thrive throughout the lifespan, adults, kids, everything, just about how do you kind of go through journeys like this, especially when they're kids?
SPEAKER_01:So you know, hope is such a powerful word. I know, you know, I'm overcoming a very aggressive cancer right now. And in my journey, I found a place where I said I can fix on this hope of okay, if I it's a solvable problem, all I gotta do is find the answers and do the hard work. And I have hope. And so, was there anything out there? I mean, I'm I'm sure you were doing research and meeting people, and you've probably dedicated your whole life as I did to we gotta see if there's something out like you just because they say there's no hope doesn't mean that we give up, right?
SPEAKER_00:Oh, yeah. Well, I mean, I think that um the I've been around now. This was, you know, Ryan died at the age of 17 and a half years old. He did survive his second birthday, then a third birthday, then a fourth birthday, and the kid kept going. If he was here joining our conversation, he would describe himself as moldy cheese, way past his expiration date. The kid was cheeky, he was wicked smart, mature beyond his years, very verbal. You couldn't shut the kid up, but he was very physically challenged. So at 17 and a half years old, when he died almost seven years ago now, he was using a power wheelchair for mobility. The computer that you and I are talking on is a gaming computer that he and I built together. Um, so he was very active and he had a joyful life, but it was very challenging. But in those early days, right when we were talking about hope, um, I believe that families who have children that are impacted with medical fragile conditions or rare diseases like this that are not expected to live long lives, the number one thing that those families want more than anything in the world is a cure for their child. That's what they hope for. They'll give anything to cure their child. But then what you realize is that sometimes there are treatments and sometimes there are cures. In our case, there was none of that available. But we had we got to save money or we got to raise money, we got to find a cure, we got to chase this thing. And then what you realize is you also need sleep. Right. And that I believe that the second thing that these families need more than anything is sleep. And that was really the um, I think the thing that we quickly realized is as we were really struggling with our day-to-day lives now, the physical therapist that was helping us, and we were now seeing very actively when Ryan was young in England. Um, that person referred us to a place called Helen House, which is the world's first children's respite, palliative and hospice home. And it was started in 1982 in Oxford, England, which happened to be 45 minutes up the road from us from where we were living in London.
SPEAKER_01:But it's the very first one was only put together 40 years ago.
SPEAKER_00:Exactly. Yeah, this whole this whole hospice care and palliative care concepts really started in England. That's kind of the mothership of all of this kind of care. It has expanded over, certainly through adult care and hospices. I think most people are familiar with end of life and hospice care for adults, but for children, it really is only 40 years young and it really started in England.
unknown:Wow.
SPEAKER_00:But it was it was described to us as a children's hospice home. And so, with those words and being very scared and trying to find hope, my wife and I really rejected that whole concept right a very right away. And we said, we're not going there. Um, we need that's death, that's dying, that's giving up. We need to find hope, we need to find a solution to this. And the the physical therapist just kept referring to response, right? Yeah. And the physical therapist just kept reinforcing to us it's a place to support your family along these very difficult journeys with overnight respite, which is a true break. We will care for your child so that mom and dad can truly sleep, um, and that it has palliative care support, which it means that the team is interdisciplinary. Not only does it have nurse, it's a basically Helen House. When we finally agreed to go, it was a warm blanket of love. It was absolutely not what we expected. We thought it's not a hospital, it's not a nursing facility. It was truly a community-based, very large home with eight children's bedrooms and three family suites and then specialty rooms. Uh, and so when we walked in, we immediately felt our shoulders come down. We immediately felt, okay, we're around people that get it, that understand this journey that we're on, because it's just you don't see families like ours in out at restaurants and in movie theaters because we're at home with so much care needs.
SPEAKER_01:Right. So, was there like a moment where like obviously you went from we're never gonna do this to well, maybe we'll go visit. Was there something that happened that caused that break, or just you just finally desperation and exhaustion?
SPEAKER_00:And we finally, it just the the physical therapist was just relentless in her referrals, and we finally said, All right, stop bugging us, we'll go check it out. Right. And when we did, like I said, a warm blanket of love, it really felt like we were in a place that that felt very comfortable immediately. We stayed there as a full family. Ethan, um, who's our older son, uh, was able to stay with us also. So it really it looked at this care and caregiving holistically from a whole family approach. It wasn't just about the child that was affected, it was the entire family that needs to be supported along these journeys. And that's what was so awesome about it. And so we stayed there as a full family. We got very comfortable with that care. It's not a babysitting service and it's not a long-term facility. The kid doesn't, you know, Ryan wouldn't live there. It was really for at least 48 hours of respite. So it's always includes an overnight. It's it's not about a few hours of we'll care for your kid as babysitting so that you can go to a date night dinner. Right. That's very important for families, also, but that's not what this is. This is at a whole nother level of care that you truly tuss trust the team. It's about two days to up to seven days in a row, up to 28 days a year at no cost. This place didn't charge families anything for anything. And then we got to be around other families and support staff that really understood this. So we could start to think about death and dying and finding joy and sharing pictures and just camaraderie and community. Um, and we had an opportunity then to have Ryan stay there by himself so that we could go home and sleep in our own beds for a few days. We could spend time with our growing toddler Ethan, who was a few years and very active, and just protect our marriage, protect, protect everything. And then um we had, you know, this was still now part of our caregiving support system for about a year and a half, and then we realizing okay, we're very much getting close to Ryan's second birthday, the date that we never thought we were gonna reach. And we're still in England. We got to get home to this to Arizona and basically get prepared for Ryan's death. And so we moved back to Phoenix, Arizona. I got a job, we got Ryan scheduled with uh therapists, and on our last stay at Helen House, um, we asked the team, okay, this is now so important to us, how do we continue this kind of care in Arizona?
SPEAKER_01:Now that you've discovered it.
SPEAKER_00:Yeah, there were 54 of these kinds of community-based care models across the United Kingdom at that time.
SPEAKER_01:Wow.
SPEAKER_00:When we came back to Arizona 20 years ago, the team looked at us and they said, Yeah, no, there's none of these in the United States, let alone Arizona or nowhere.
SPEAKER_01:And and that's just crazy. I mean, the UK, the whole UK fits into Texas, and here we are, this whole giant country, and there's not a not a nothing.
SPEAKER_00:Our country is five times bigger population-wise than the UK. And you said geographically it fits into Texas, and then population-wise, we're five times bigger. They had 54 of these houses. We should have hundreds of these. We had none 20 years ago. And so when we came back, we said, Well, that stinks. There's nothing we can do about that. We got Ryan's care going. I got a job. Life kind of resumed. And then about a year after being back, my wife started passionately talking about our experiences at Helen House, and a community started to rally around her. Um, and long story, long story short, um, people kept saying, I can't believe this doesn't happen. This needs to happen. And so we had a community meeting with some various community leaders, just trying to share this idea. And on the drive home, my wife and I looked at each other and we said, I think everybody's telling us we we need to do this. I guess we're doing this. And so we incorporated what has become Ryan House. And our goal very much became again, we had no intention of starting a nonprofit. We had no intention of doing this, it just kind of organically happened. We often say the stars aligned. Right family, right set of experiences, right kind of connections in the community. So when we made the decision to incorporate and become Ryan House, um, our vision then quickly became to bring Helen House to Phoenix. Nothing more, but nothing less.
SPEAKER_01:All right.
SPEAKER_00:So we had a clear model at least to work on. Yeah, exactly. We had no idea how to build it, we had no idea how to license it or pay for it.
SPEAKER_01:We knew what it was supposed to look like.
SPEAKER_00:Yep, we just knew what it was supposed to do. All right, and so um we were very fortunate. Exactly. It just just passion and persistence and just go for it, man. And so we were very fortunate to get involved with some amazing community leaders here in Phoenix. They became our board members. I was the first board chair, I'm the one that filled out all the 501c3 paperwork to become a nonprofit. Um, and a lot of those first meetings were arranged by some of our community board members that would have a meeting with the Rotarian group at the Phoenix Country Club.
SPEAKER_01:And they're all about that stuff. I run a 501c3.
SPEAKER_00:Yeah, they basically tell, you know, I was told, okay, show up tomorrow at 7 a.m. for the breakfast. Here's a microphone, tell them what we're doing and make them cry. Yep. I'm like, okay. So we basically had to kind of share our family journey and our experiences and why this was such an amazing care model to this group in Phoenix who very much supported it. It took us six years of raising money. We eventually raised enough money and got land donations and and ultimately put a shovel in the ground, formed partnerships, and Ryan House was opened. Um, we incorporated in 2004. Ryan House was opened in 2010. We never thought Ryan would be alive when Ryan House opened.
SPEAKER_01:Meanwhile, he's still going.
SPEAKER_00:Yeah, yeah. The kid just kept going. Moldy cheese. And um he and he and his older brother were able to do the the rope untying to officially open the house. Um and then it's been open now for over 15 years. It has served thousands of families with this overnight respite and emotional support. It has nurses in the house 24-7. It has childlife specialists and social workers and chaplain services. It's not a medical model, it's a caregiving model. It really is a community-based model of care to help enhance quality of life along these very difficult journeys. We want to connect with families the moment they find out they're on this journey, which oftentimes is at diagnosis. But I actually believe that there's even ahead of that with a moment of concern. A lot of times with children, there are thousands of rare diseases that I can't even begin to pronounce.
SPEAKER_01:Absolutely. And but you just know something their own set of challenges and their own Yeah.
SPEAKER_00:But you just know something's not right. And so when you sense that something's not right, Ryan House, if you're here in in the Arizona market, Ryan House can support you, provide you a break, an opportunity for care, and then help you think through your journey with anticipatory grief and planning and just help you find joy throughout the journey. And then if and when your child needs end-of-life care or hospice, then it becomes the natural children's hospice home, also. So it's not built for death and dying, it is built for the journey that oftentimes will be death and dying and end of life. And so um, again, we've served thousands of families in the 15 years. We've had over 550 children die at Ryan House, including my son Ryan, who took his last birth there in um December of 2018.
SPEAKER_01:Wow, what a powerful experience! And how big is this place?
SPEAKER_00:Uh, so the house itself is very much modeled after Helen House in in England. So it's from a square footage perspective, it's about 12,500 square feet. It has eight children's bedrooms, three family suites, because the first time a family comes and stays, mom and dad or the primary caregiver has to stay at the house also. It always is at least 48 hours. So it always includes an overnight. And oftentimes, children on these medical fragile, you know, that are have very complex medical conditions, they've never been cared for by anybody other than mom or dad. Or mom and dad have never allowed anybody to care for them other than themselves. So there's kind of a I describe it kind of as a weaning off period a little bit where everybody just has to get comfortable. The team at Ryan House, they know how to do tracheotomy care. They know how to do G tubes and feeding tubes and transfer kids from wheelchairs and do medicines throughout the day. It's really the trust and the just the nuances of the unique care of that particular child.
SPEAKER_01:The parents have to come quickly to be able to trust the team because that's you know very very, very difficult for somebody who's been the only ones that know how to take care of their kid. And now they're gonna say, okay, well, there's somebody else who knows how to do what we do.
SPEAKER_00:Yeah. I mean, our older son, our older son Ethan, able-bodied now 27 years old, he could go stay the night at a friend's house, a babysitter could easily care for him. But if and there were people that wanted to help us with Ryan, um, and some people we trusted to do that with, but a lot of times it's like if you're not comfortable moving him, you could break his bone. Oh, yeah, he had a lot of fragile conditions, you may miss his medicines. Um, it it gets very intense. And for somebody to take on that responsibility, they want to help, but they just can't. It's just the reality of it. Um, and so the this house also has specialty rooms. So if you were to take a virtual tour of a Ryan house kind of a model, not only do they sometimes videos on YouTube for houses like Ryan House that you can take virtual tours, but it's um it's not only do they have the eight children's bedrooms, the three family suites, um, because when a child is there for end-of-life care, the families want to be in that house. They want to basically, when a child is there for end-of-life care, the team at a place like Orion House um is there to provide all the caregiving support so that mom and dad can be mom and dad and really focus on the love and the and the just those memories and just the experience of the end-of-life journey. But there's also specialty rooms. So, like there's a music room, there's an art room, a sensory room, the playground is accessible. My son drove a wheelchair so he could get onto the playground and enjoy himself. There was a memorial garden. So the place was built from the ground up for children with significant medical complexities and their families to do this kind of care. And there are other communities across the country that have tried to do this kind of care. So when we started Ryan House, I looked out into the country. I'm like, come on, we can't be the only one doing this.
SPEAKER_01:Right, right.
SPEAKER_00:And I discovered there are lots of other communities and passionate people that have heard about these kinds of models that want to do something very similar, but it's really hard. Um, it's very difficult to raise the kind of philanthropy charity dollars that it takes to run a Ryan House because again, Ryan House doesn't charge anything to any, you know, it doesn't charge families anything for any of the care. It is all done through support and generosity of the Arizona community. And it raises three and a half million dollars a year.
SPEAKER_01:End up donating, anyways.
SPEAKER_00:Yeah, yeah, absolutely. Well, so for Ryan House, it raises three and a half million dollars a year through philanthropy. The, the, the main, so these other communities across the country that have been trying to do this, they really struggle with trying to raise that kind of level of money to build a house and to sustain a house. And so these different communities had yearned for national leadership. We'd get together every once in a while as we discovered each other, and we'd kind of talk and we'd say, Hey, wouldn't it be great if there was a national leadership? But nobody was willing to kind of step up and lead this charge from a national level. I wasn't willing to do it either because I through these years was dad of Ryan. Right. You know, I was a vice president of marketing trying to support my own family. Yeah, I was still very involved in the board at Ryan House, sure, and I didn't have time to do it, but then Ryan died. Right. And and when Ryan died in December of 2018, that changed everything for me. Okay, that hit me really hard.
SPEAKER_01:Of course.
SPEAKER_00:Um, and I decided that became the significant tipping point for me. I when you have a death of a child, so in in Ryan's last couple years of life, when he was 15 years old, we started to get a lot of um nighttime nursing and home health support in our house. Um, and Ryan was cared for. We were very good champions of Ryan's care and working the system to be able to help support this. And a lot of families struggle with that. My wife and I became very experienced and very effective at championing the system to get care for Ryan. And so in the last couple of years of his life, we had five nights of nighttime nursing coming into our house. There was just a a road road, you know, rotation of people coming in our house all the time. That was just life. But when your child dies, all of that stops immediately. Right. And then it's quiet.
SPEAKER_01:Yeah.
SPEAKER_00:And the quiet is deafening, it just drives you nuts because you're just not used to that for 17 and a half years. Right. And and so I really decided that I got so frustrated at the US healthcare system that we needed to we need to change the system. We need to help these models um get open. And we need to basically what we're taking is a child, a model of care really designed for children and families that were that is trying to fit into a world really designed for adult care. Okay. And so licensing and reimbursement pathways for to support these kinds of models beyond philanthropy need to be rethought about and reframed. And so I decided that when Ryan died, that I maybe it's the time, maybe I'm the guy. Let's let's go for this now.
SPEAKER_01:All right.
SPEAKER_00:I I went back to school. I decided I I I love parent advisory councils, but I thought I had the skill set, the life experiences, the passion to do something more. Went back to school, got a master's in public health so that I could become a public health expert. All right. Went to Johns Hopkins, got a fabulous education and an outstanding network that I was able to now kind of re-emerge as a national thought leader in this space. Wow. Um, and then what I started to do is kind of um corral these communities across the country into a cohesive, formalized coalition. And so we created um, and again, I didn't respond to that. What's that?
SPEAKER_01:How did they respond to that? I mean, no, they loved it because again, they're hunger-free for it.
SPEAKER_00:Yeah, they were looking for leadership and community building and realizing that they're not alone. And so what happened was just like when my wife Holly and I started Ryan House, we didn't intend to do it. People started to around surround us. The same thing kind of happened at the national level where these communities were really, you know, really just looking for this kind of leadership. And so it just needed a stake in the ground to really rally around. And so I created that. So we launched an organization called the National Center for Pediatric Palliative Care Homes, which is a mouthful. And so we just refer to us ourselves as the national center. Yeah. Um, and then what we did is we created an umbrella brand called Children's Respite Homes of America. And we have a website called children's respitehomes.org. And that really is the more public-facing, easier to kind of remember, children's respitehomes.org. That really is a website that is us that really shows you the 41 pioneers and leaders across the US now, across 28 states that have now come together, that are all trying to do these kinds of programs in their own states. So it's everything up in Seattle to Atlanta to Iowa to New York, um, Ohio, all across the country. We're helping to support now. We're we've got basically three main pillars. We're trying to bring more education and awareness to these family journeys and this model of care. We're trying to advocate and change the world. And really, that's about legislation and policy. And that's why I went and got a master's in public health.
SPEAKER_01:To really help in the room, yeah.
SPEAKER_00:Yeah. So let's we got to change this at the federal level. We need to have conversations with the centers of Medicare and Medicaid. We need to have national legislation and the Social Security Act. And it's that's the stuff I get excited about now because that's really the change the world stuff. And then at the state level, we need to change licensing and and reimbursement payment models, and that gets into weeds in detail, but that's what I'm designed to do now. And then we also have community building, which is really about these leaders in these communities, in these families to say, you're not alone. We see you, we hear you, we can support you. Um, and so what I love about these conversations is as you've got kind of a nice national reach also. So if a family is hearing this and going, well, I don't live in Phoenix, I live in Atlanta, Georgia, it's like there is a program trying to get going in Atlanta. Um, and so on children's respithomes.org, we have a map that you can link to find wherever you are. We can link to the closest program that's developing. You can get more involved in that group if you want to get involved and support them locally. If you're interested in in this kind of a movement and and have some skills or experience or passion and want to help change the world and get involved with us at a national level, we love that too. Um, and and that's really what we're doing now. And so I say my son is clearly my North Star. He's definitely my fuel and my energy. Um, and and that's you know, that's what's going on.
SPEAKER_01:I see that um the information I have says you guys are on a roadmap to build 50 children's care homes in 50 cities over across the next five years. Yeah. And so I I know we're running low on time, but this is we're we're doing really well. I think um I I I don't want to nip this too tight. Um So you still have the one home that is functioning. Are there others that have started up yet?
SPEAKER_00:Yeah, yeah. So the the what we've done is we wanted to showcase the success that is happening across the country. So 20 years ago, when my wife and I came back from England, nothing. There were none of these in the United States. Ryan House in Phoenix ended up opening as the second one of these in the United States. The first one is called George Mark Children's House in a suburb of Oakland, California. Also inspired and modeled after what was happening in the UK. The third house that opened is called Crescent Cove in the Twin Cities in Minneapolis. And they were also learning about this model. They heard about Ryan House. They came down and visited us in Phoenix, and we kind of helped inspire a lot of the design of what was going on in Minneapolis. Those are the three houses that are very much the UK Helen House kind of model. Okay. We also have four other programs that are open in our coalition that are iterations on this theme. They all care about medically fragile children. They're all delivering respite care in their communities, and they're all very passionate about trying to make change like this. And so that's uh Salt Lake City, Seattle, South Bend, Indiana, Chicago, are the other open programs. And then what you'll see on our map at children's respitehomes.org are those are the green dots on our map. And we want those to be 50 in the next five years.
SPEAKER_01:Yeah, that's a good starting point.
SPEAKER_00:Yeah, and we want hundreds of them eventually to be the same scale as the UK. And then we have yellow dots, which are nonprofits that are organized in communities that are currently raising money. Some of those programs are already doing some support. They don't have a physical house yet to do overnight respite, but they're already providing some level of care or certainly doing runs and charity events and breakfasts and galas and raising money. So there are ways to get involved locally on the yellow dots for sure. And then we have blue dots, which are the new pioneers. Those are the people that have heard about us, have heard about this kind of care model and say, oh, we need this in our community. And so we have a lot of blue dots. And then what our organization does is kind of coach and guide them through how to start an organization, how to become a nonprofit, how to form boards, how to, how to really kind of build this kind of a program and ultimately how to advocate with your state to get this thing to be sustainable so that you don't have to depend on philanthropy forever. And it's um, it just is an amazing. I mean, we're three years into our organization now. We're just getting ready to start our fourth year. Um, I wish that we were much farther ahead because I've got a ton of passion and I excitement and I know this is going to take a lot of years. But I also reflect back on the last three years and go, wow, we've accomplished a lot. The fact that we've got 41 pioneers in programs across 28 states all working together. We've got amazing government affairs councils with just some significant national thought leaders that want to help make this change happen. We've got national advisory councils, an amazing board of directors and supporters. And so it's a it's a very different day today than it was 20 years ago when my wife and I started Ryan House. We had no idea what was going on.
SPEAKER_01:Wow. Wow, you guys have had a as few people I've met have made a giant impact on the world, just as you set out to. Well, listen, Jonathan. Um I'd always like to try to wrap things into a parting shot as a final thought that you know clearly we have a lot more we could talk about. I'd love to have you come back and go deep into some of these little topics. We didn't even really discuss the family, yeah, the burden to the marriage, to the family, and all that. And there's so many elements that we could go deeper on. But if you've got one message that you'd like to send our listeners with, I'd certainly love to hear what that sounds like.
SPEAKER_00:I I think that the the um you know, from a family perspective, we get it, we understand it. These are very difficult journeys. I think that there's a lot of love and support and and wanting to help you on these journeys. And I think that uh from a community building, if if you're listening to this, I'm a marketing person. My wife was a school teacher. We are not, you know, we didn't start these kind of programs with an idea that we are policy experts or business experts. We just had passion and said we need to help our community get this level of caregiving for these families. And to those people that really are hearing this for that, there's support for you also. There's, you know, please check out children's respithomes.org to learn more, to get involved with us, to um get on our contact email list. Um it's just it's a you know, we got a long way to go in America, but we're making progress.
SPEAKER_01:Beautiful. And uh children's so why don't you go ahead and give us our your contact information again? I I yeah, sure.
SPEAKER_00:The easiest way to try and remember this is children's respitehomes.org is our website. And then through that you can get to all of the links and Facebooks and Linkins and all that other stuff too.
SPEAKER_01:But beautiful, beautiful. Well, Jonathan, this has been a very inspiring conversation. I would certainly love to have you back to go deeper into this and just want to thank you for sharing your time with us.
SPEAKER_00:Joe, this has been great. Thank you very much for having me.
SPEAKER_01:Beautiful. Well, this has been another episode of the Healthy Living Podcast. I'm your host, Joe Grumbine, and I'd like to thank our listeners for making this all possible. And we will see you next time.
