Latest / Hart & Hustle Podcast / The Hidden Cost of Paralysis No One Talks About
Transcript
- Efrain: Welcome back to another episode here on the Hard House of Podcast. I'm E Frank. We got Miss Sarah in the building. How you doing, Sarah? Sarah Merrefield: Hey, great. It's so good to be with you. Efrain: Same. It's always exciting to just be able to have this virtual call from with someone from somewhere in the United States. Where are you located, Sarah? Sarah Merrefield: actually in Burlington, Vermont right now for the summer, but I live in New York City for the rest of the year. Efrain: What is what is the difference in weather? Is is Yeah. Sarah Merrefield: so much better up here. It's just perfect. Beautiful. It's probably seventy five degrees and sunny here today. Efrain: So, do you do like half the time in Vermont and half the time in New York? What a blessing. How long have you been doing that? Sarah Merrefield: As best I can, yes, yes. Yeah. Just about four years now and it's been so lovely. Yeah. Efrain: my god, I'm have to jump on that bandwagon and find somewhere else because I'm in Orlando most of the time and you know it's hot and humid all the time. Sarah Merrefield: Yes. I yeah. I bet in the winter though I'll be wondering how you're doing. Efrain: You know, it's still hot during the winter. We have like three weeks of winter. It it's it it's really funny because it's always hot for us. Summer just becomes even Sarah Merrefield: Yeah. Efrain: hotter, but it's just like one of those things that you kinda get used to as well. you just stay home Sarah Merrefield: Kind of just the norm. Efrain: per se. Yeah, it it is it's truly the norm. That's why we have so many water parks and things going on here. But Sarah, what organization are you representing today? Sarah Merrefield: So I'm at the Thomas E. Smith Foundation, and our work centers on bettering the lives of those living with paralysis. Efrain: And how did you get to this space? Sarah Merrefield: it's a long story. You know what's interesting? I Efrain: Let's go. We got it. We got thirty minutes at least. Sarah Merrefield: started my career in Burlington, Vermont, actually, where I was the summer reading coordinator. And it was probably the most interesting job I really ever could have had at that stage. And I was an English major, was really into reading and thought, how cool, you get to work at the library, get to meet kids across the city. And my job was to kind of bring the library to communities, especially those with low income. And I realized very quickly that it is not summer reading that people have on their top priority list. It really is things like food and shelter and dental care and things of that nature. And it was around then that I thought, okay, so you can do a lot of good work at the program level, but to really make change on some of these big societal issues, we're gonna have to really focus on making change at the policy level. And so that's when I moved to New York City to be part of an organization focused on really Building evidence on what works to improve the lives of low-income people by way of policy. And it was an incredible experience. Got to do lots of work across every domain you can think of, from education on through to other parts of our society. And around that time, maybe five years later, I started to say to myself, okay, so 10-year studies are really important, but that takes a long time. And I got really interested in health and since then have been working at the intersection of kind of what people call the social determinants of health, which are really what makes you well, and community health, and have been working on projects that invest in innovation in those spaces. And it was around that time that health began to be very focused on outcomes and gave us the opportunity to say, okay, how do we make change that's not just by way of the hospital? How do we think about wellness in the community? And it's been really exciting ever since. And so I joined the Thomas E. Smith Foundation probably about two and a half years ago. And I had been at the intersection of every single health issue that causes inequity. And I remember thinking, hmm, access to breast cancer care, for example. If you're someone with low income, you likely don't have paid time off, for example. So out of pocket, people are having to spend, you know, their time losing money, and it ended up being something like a hundred thousand dollars someone could incur out of pocket just to get breast cancer care. And I remember thinking, this is the worst thing I've ever heard. How could we possibly allow that in our society? That it's a th 100,000 or you don't get the treatment. And then my best friend from growing up had her better half had a spinal cord injury. And never had I ever met anyone who had that type of injury. And of course, I thought 100,000 was crazy with breast cancer. With a spinal cord injury, People are paying out of pocket, depending on their age at the time of injury and how long they live, essentially, upwards of six million dollars out of pocket. And I thought that was egregious. And you know, this friend of mine, they had to find a place to get him to be able to walk again. And not every community has that kind of facility. And so I began to learn a lot about the issue then and became very passionate about really focusing on how do we shed a light on this issue, how do we make some change. And how do we let people know that this is even happening? And so it's been really a pleasure to be able to be part of the community that's focused on raising awareness, but also changing the game for how care is delivered for people who have this type of injury. Efrain: Where does the passion for people start? It looks like you've Sarah Merrefield: Where does the fashion for people start? what a good question. You know, I grew up in a community where it was very progressive. I grew up in Portland, Maine. And I think that that sense of community was just part of the fabric of the entire space and where I was and where I grew up, it was a very good mix of people with different income levels, people of different racial backgrounds, and it was a really accepting community and There was a lot of responsibility on the part of community members to take part in different parts of the safe social safety net, for example. It was a big part of our school and growing up. And I think that's where it probably started. But you know, I think there's a saying that's something like we're as good as the worst wrong of our ladder. And I think that if we want to have a good place to live, you've got to be part of the solution. Efrain: Yeah, no, I a hundred percent agree. And it's it's hard work. We were just kind of talking about it, you know, when especially when you're trying to put on these fundraisers, it's like you ask yourself, What am I doing? Is this going to work? Yeah, yeah. You know, but we we Yeah, and then you realize people do, right? one thing I I Sarah Merrefield: What am I doing growing upstream? Does anybody care about this? Yes, they certainly do. Efrain: heard very early on, I guess getting into this work, was from my father in law. And he says, just remember that there's a thousand of you, but there's a hundred thousand of people that are not with you. Right. And that's what it feels like sometimes. It's like, where are the people that do care? Because it is very hard to get those people in a room sometimes. But when they're in a room, just the impact that is truly happening, the collaboration piece of it, the resources piece that sometimes people don't even know what's in their own backyard, what's happening to people around them. because sometimes we stay so much into our own, you know. Sarah Merrefield: So true. Efrain: little circles or whatever that may look like. so you being in the space of just kind of almost being at the mountaintop and saying, Hey, this is happening. You know, do you ever feel Sarah Merrefield: Yes, for sure. Efrain: doubt, Sarah, when you as you're doing this? Like what does that look like? How do you quiet the noise? Sarah Merrefield: Yes. You know, every single day there's an easy out for s having doubt, right? There's the healthcare system, it's so vast, it's so commercial, it's so difficult. So for example, you see someone go by in a wheelchair. You would have no idea that oftentimes people have to pay out of pocket for a wheelchair. That just sounds wrong, right? Efrain: Yeah, yeah, for sure. Sarah Merrefield: And that gives you doubt sometimes because you're like, How am I ever gonna make a difference in this? And Another thing, every five years you can have a replacement wheelchair, for example. Five years is a very long time if you use the same piece of equipment every single day. Imagine like you had to wear the same jeans every day for five years and not Efrain: Yeah, yeah. Sarah Merrefield: and expect it to still work, right? There'll be holes in it that has to be repaired. All of those things can take so much time and put people on the sidelines. And so it can feel really daunting to be in the field that we're in just because these pieces of equipment are so expensive. A wheelchair can be sometimes thirty thousand dollars or more, depending on if it's a power chair or not. And so the fact that organizations like us have to fill in the gaps that you would think insurance should cover can be very daunting. But it's also amazing when you see, to your point, when people come together. So over the last year or so, there's been a lot of work around the right to repair. So having a timely access to repair to wheelchairs, and that has made such a difference in the lives of so many people. And On an issue that you and I are fortunate enough to not have to worry about, right? So imagine you're waiting months to have your wheelchair replaced. We have a friend who she's in her 30s. She uses a wheelchair and she told us that she wasn't going out to parties or meeting people or doing all the things that we take for granted that people that age should be doing because she was so worried her wheelchair was gonna give out and she needed it for her job. Efrain: Wow. Sarah Merrefield: And so we got her a new one, and that made all the difference. So when we do have doubt. Just know that the impact, even if it's one to one, us and this friend of ours, it's huge. It meets it means she can go out, meet friends, maybe meet a partner that she wants to build a life with. I mean, these are Efrain: Yeah. Sarah Merrefield: the things that at the end of our days we care about. And so when we think about what do we do to come together, how do we make a difference, even if it's one person, that sheds Efrain: Mm-hmm. Sarah Merrefield: such light on the issue, and it also really does quell the doubt that you may have over time. Efrain: And the Thomas Smith Foundation, like what does it look like for someone that is wanting to get this assistance? Like, I'm going to the website, I'm calling, is it just kind of referral based? How does someone know about it? Sarah Merrefield: Yeah, so we have a website and we accept applications on a rolling basis. We have a section where you can tell us a little bit about your story and we have a committee of individuals who are living with the impacts of spinal cord injury and paralysis who join us every month to help us make the best decision that we can about the grants. And so we do as many of those as we possibly can. Most of the time though, the reason we don't fund something is only budgetary. I've never yet met someone who had so much money that they you know, didn't need a grant or that the opportunity for a wheelchair wouldn't make a huge difference in their lives. really it comes down to the available resources. So to your point, we're doing the most that we can to raise additional dollars to do more of that work. But in addition to that, we do a lot of work in terms of focusing on groundbreaking research. So in the SCI space or spinal cord injury, there's a lot of clinical trials that are underway that are Pretty proven, but because of the technology, they need to be done. The clinical care needs to be done in a setting that's you know monitored and so forth. So we do on occasion fund access to those studies so that people can have the best chance at mobility as possible. And we also do a lot of work to the point around doubt, around changing the game. So we call it our redefining possible area of work. And what it is is chipping away at some of the access issues, so not only the insurance piece, but really thinking through, okay, for example, if you are just a regular individual and you want to go to a concert, if you're in a chair, often people standing in front of you block your view. And so we're doing a big concert in Boston at the At a place called Park City, which is a really cool outdoor venue, really fun. And we're working with the venue to ensure that the space that people in chairs can occupy is right at the front. And that the whole thing is turned on a switch such that it's all about belonging. And so thinking about how we with very small effort can make a huge difference in someone's experience, someone's day, someone's life. Those are the things we want to do too. So we do a lot of the grant making work, but also we try to focus on how can we change the world even one concert at a time. Efrain: Wow, yeah, it must take a lot of work. But no, that's that's actually pretty cool when you think about it. Like people do not think about the bigger picture sometimes. They just may think about just kind of that moment. But when you really e expand what that life looks like for that individual, like they really want to live a comfortable life without some of the hassles. So you guys are really just making sure those hassles are kind of being shipped at 'cause people don't think about it, right, until they're there. Sarah Merrefield: Exactly. You don't think about it until you have that experience. We call it it's an if you know you know cause and we want more people to be under the tent. Efrain: And when you mention that, like is it that this is there's not a lot of organizations doing what you guys are doing? Is that why it's become so difficult and essential challenge as well? It's just because you guys are kind of building this? Sarah Merrefield: Yeah, that's a really good question. Yeah. So only about two percent of philanthropic dollars in this country, so private charity money, goes to support any disability related cause. And so when you think about that, that's, you know, children with intellectual disabilities, that's all kinds of you know, spectrum based disabilities and so forth. So when you really drill it down, there are very few organizations focused on People living with the impact of spinal cord injury and who are living with paralysis for other diagnostic reasons. And what's interesting about that is it means that there's such a huge opportunity to make a change, and that small changes can make a big difference at this point in time. But there really are only a few organizations, and many of them are very small. And so one of our big efforts over the coming year is to really focus on how do we work together? How do we Efrain: Yeah. Sarah Merrefield: you know, thread the needle such that organizations that are doing a lot of really amazing work around sports, for example, could partner with us that we're really focused on necessary healthcare care equipment and things of that nature to really come together and support people in meaningful ways. That even if we don't have, you know, a billion dollars, which would probably take more than that to solve this issue overnight, coming together we're stronger. And I think that's a huge opportunity in our field, which is one that's you know, very underfunded, but I think it's an opportunity everywhere across the the spectrum of our communities. Efrain: Do you know how many people you guys served in twenty twenty five, or even how many you've guys served thus far in twenty twenty six? Sarah Merrefield: Yeah, it depends on how you shake the numbers. So we usually support about a hundred people in terms of grants. So when you think about that, it sounds like, okay, a hundred people, that's not very many. But again, when you're thinking about a wheelchair that costs twenty five thousand dollars or a track chair, which is one that we purchased recently, enabled someone to get back to work because they work on a construction site and a regular wheelchair just never could go through that kind of terrain, that's fifteen to twenty thousand dollars. So when you think about Efrain: Mm. Sarah Merrefield: the reach While it might be a lower number, it's really interesting when you think about the impact that it has on an individual. And so that's just our grant program. And then we support hundreds of families, it's about a thousand families over the last year, when they want to navigate the system. Right now, the system is really difficult to get through one care setting to another. Mostly because a spinal cord injury is multi-systemic. So it hurts all kinds of different parts of your body in different ways and it connects your health to different parts of the healthcare system that don't always talk very well to one another. And it can be difficult to navigate where should I go if I want to, you know, get extensive physical therapy to be stronger, to be able to feel good about going out, to have less pain, to maybe gain mobility. This is all new. Most people don't know a lot about this. So we do a lot of work to support people navigating and and doing that kind of thing. And we also do these big events. So we have lots of folks who come and join us to raise money and awareness and and we're really fortunate to have them join us in this too. Efrain: Yeah, I know for sure. And something that is still, as you mentioned, still growing, still still on the up and up, of course. how many people are are part of this team? You you y there's a lot. There's a lot of making sure people are educated in this space, making sure that we could get these grants in place, we can spread the word. I can imagine a lot of boots on the ground through these events, things like that. Like what does the team look like on the back end? Sarah Merrefield: Yeah. Yeah. So we are a small and mighty team of four people. our namesake, Tom Smith, was actually, we think, the only person in medical history to have been paralyzed not once, but three different times. and Efrain: my god. Sarah Merrefield: he he's truly an inspiration. He, you know, is the spirit behind our mission, which is he had access to care that enabled him to walk today. And not everybody has that access. And so when we think about our work, that's really at the core of it. How do we make sure that everybody has access to the kind of care that helps them reach the goals they have, right? And not everyone will be able to have the same result, but everybody should have access to the same opportunity. And so when you think about my friend who I was telling you about, who had to fly to another community just to have access to that kind of mobility unlocking clinical care, it just it's unbelievable that that would be the case. And if it wasn't for family members or other supporters, they wouldn't have been able to do that. And so our work is to make sure as many people as we can have that kind of access that he did. Efrain: Is Thomas still day to day? Sarah Merrefield: Yeah, so he's on the team. That's what yeah, so he's on the team every day. He's unstoppable. It's truly amazing. Efrain: Wow. Love it. Sarah Merrefield: He's walked the Boston Marathon, for example, eight times and is a real inspiration Efrain: Well. Sarah Merrefield: to all of us. And so his brother Chris, who is a caregiver to him, is also on our team. He leads our advancement efforts. And we have Jenna, who is our really senior engagement person. So she does a lot of work around our grants and events. And so the four of us are the champions of this work every single day and we have nine really wonderful board of director members who do a lot of volunteering for our work too. So we would be lost without all of them as well. Efrain: What what does Thomas teach you? I mean, what a leader in itself, right? To kind of walk not only just talk to talk, but he's literally walking the walk on and and showing people. Sarah Merrefield: It's truly remarkable to see what something like that does to a person. I've met lots of people over the time here at the foundation who have gone through remarkable journeys. But when I think about Tom, the thing that inspires me the most about him is he doesn't ever have one bad day. Every day is a good day. And he is so positive, sees sees through anything that's, you know, gone wrong and really sees the bright side. And I'll never forget one time we were at this presentation, it was a funding opportunity, and the two of us were kind of sharing what our work is and how we get it done and so forth. And someone asked him, How are you not angry? And I thought, I've never thought to ask that. And please tell me the answer because that's you could see being very Efrain: Yeah. Sarah Merrefield: very angry if that happened to you three times. And he said, Because I know what it's like to not have the outcomes that I've had. And he thinks about people who are paralyzed from the neck down, for example, and he's walking today. And so he lives with this purpose that is contagious and I think spreads its way through all that we do. And we're very person-centered for that reason. And when I think about that, when you were talking about doubt earlier and feeling down about, you know, are we ever gonna make a difference? Efrain: Yeah. Sarah Merrefield: that makes a difference every single day. So I try to take that into the spirit of how I approach my work and it's made a huge difference just in terms of unlocking how do we think about this, right? And so it's really inspiring to have that perspective. Efrain: I mean you're in a t difficult situation because anytime you think of doubt, you look across the table and it's Thomas there, you're like, Wha what what am I doubting here? Like Sarah Merrefield: I know, I know. If you ever feel like you're I'm kinda tired today, you're like no. Imagining the hard work that he put into where he is today Efrain: Yeah. Sarah Merrefield: is is it's really inspiring. Yeah. Efrain: And I think you may even mention it. How old is the organization? Sarah Merrefield: So we've been in business since 2010, but only the last few years fully staffed. We were really fortunate to receive a capacity building grant to really grow our operations, which has been a substantial just a wonderful opportunity for us to really grow and double down on what we've learned over the years that really works to support people. And so what's interesting is there are lots of small foundations that are across operating very similarly, just with volunteers. Maybe they have one year fundraiser. And having the opportunity to grow from that to a full scale organization is truly amazing. It's very rare that organizations receive that kind of support. And it's a real testament to the work that Tom and others on the team have done over the years to support people living with paralysis. And so it's been just a joy to be part of the journey and the inaugural executive director. Efrain: And what do you like, what are some of the goals that you you want to see get done? I mean, you being in that seat, really kind of h heading this machine, it's no easy task, but I can imagine you took in this responsibility with things in mind. What are those things that you want to accomplish? Sarah Merrefield: Yeah, you know, it's really interesting. Every day there's the one on one goals that you have. So I want someone like the friend I was talking about to have access to doing all the things that she wants to do. So those are the kinds of goals that kind of fuel your day. We get to talk to and interview people who could be a beneficiary of a grant and hearing what it will do for them is so inspiring. But when I think about what are our broad goals, there are too few leaders in this space really trying to drive. the systems change that we know is so important for this. And so over the next year, we're going to focus a little bit more narrowly on how we support individuals and use that information and data to really inform our work in our redefining possible area to champion, say, having access to the wheelchair, for example, since I we were talking about that. What does that mean several years from now for an individual? Can we share not only stories about individuals, but what the impact is on them, their community, their family members, such that we can have a larger change making agenda, not only locally but nationally as well. And what's exciting too is we've worked over the last year or so to look at what are s kind of the upfront costs that we invest in an in a person and what does that mean in terms of savings in the healthcare system. So for every dollar that we invest in an individual, We know with absolute certainty, without any confusion, that it saves ten dollars in the healthcare space from prev avoidable, preventable hospital stays, for example. having a wheelchair that fits you, that is safe, that has a cushion that keeps your body from having pressure sores, for example, can save you two weeks in the hospital. and that's that's a real huge cost. So, what we want to do over the next year or two is help. share that data and inform the field that, hey, doing right is not only good, but it also is financially beneficial, right? And so that's one of the big goals we have is to really focus on that over the next couple of years. Efrain: Data's everything, right? That's just how we get people to Sarah Merrefield: For sure. Efrain: when people get to see their where their impact is going, where their dollars are going, it just kind of almost keeps that moving forward. Would you say that 'cause I think that's one of the toughest things in in non profits is the data part of it. Would you guys Sarah Merrefield: Mm. Efrain: say you guys done a good job of just kind of structuring that foundation to keep moving? Sarah Merrefield: Yes. So we're very fortunate that we received that grant to be able to build out our data reporting capacity. So we had a budget to build in databases and utilize Efrain: That's good. Sarah Merrefield: those tools. But even if you don't have those, it feels like nowadays there's so much better access to tools that are free and available. And I think as we do our work, the more we can quantify it, the more we can share our benefit with the world. And unfortunately, most of that is financial. Right. So when it comes down to it, what does it mean to invest in an in a person, a community, and what have you has to be borne out in data. And I know donors are more sophisticated now and they want to see that level of impact. And so being able to report on it is great, but it's also really important to have an intentionality. So when you make the investment, you know what the theory is behind exactly what kind of change you're trying to make. So that the data is obvious from the beginning what you're trying to collect. Sometimes, you know, I used to work with community health centers a lot and they used to do these incredible projects. And sometimes the project would sort of meander, right? You have this funding to do as something really cool with patients. And then you start to learn from the patients that actually it's something like this, and you kind of make turns along the way, and you haven't invested in, okay, what is the theory that we're trying to change? you might be collecting the wrong data from the outset because now the problem you're solving has changed. And so it's just keeping an eye on what are you trying to do and what is the intended outcome and just trying to make sure you're always collecting the right data. And then two, I think sometimes foundations in particular can collect too much data. So just because you can collect it doesn't mean you should burden people with that fact. So I think the fewer things you collect, but the ones that make Efrain: Okay. Sarah Merrefield: the most sense are what I think has helped me be able to kind of make the case for support. Efrain: What what do you do outside of all this? It seems like this is this is you, this is your bread and butter. I can imagine you wake up just thinking about the next step. But when you turn it off, what does Sarah doing? Like what does people maybe Sarah Merrefield: Yeah. Efrain: not know that Sarah loves or something? Sarah Merrefield: If you know me, you know my entire basement is full of bikes. So I love bike riding so much. And not in a competitive, like super fast way, but here in Burlington, Vermont, there's a beautiful bike path that's along the lake. And you know what you're not doing when you're on your bike is you're not looking on your phone. You're not scrolling Efrain: Yeah, okay. Sarah Merrefield: on Instagram or anything like that. You just are taking in the outdoors. And I absolutely love to spend as much time as possible doing that because it lets your mind just like relax and some of your best ideas come when you're not on your phone and you're actually enjoying the space that is outside. I think someone said on a podcast I listened to recently that we spend ninety something percent of our day indoors. And so it's it's no wonder that that's the first thing that comes to mind that I love doing because we are so much indoors. And so being able to be outside Efrain: Yeah. Sarah Merrefield: is amazing. Efrain: Good. That means you know, I don't know if it's ca it'cause 'cause I get I'm getting older, but I'm at that space as well. It's like I love the outside and like I love to go hiking. But it is those things that really allow you to turn off. I was Sarah Merrefield: Yes. So good for you. Yes. Efrain: recently doing with my with my daughter, I was doing a puzzle and I can't tell you the last time I did a puzzle. But I sat there and I'm Sarah Merrefield: cool. Efrain: I'm one of like very competitive, so it's like I'm gonna finish this puzzle. And I I finished a puzzle Sarah Merrefield: Ha ha ha. Efrain: and at the end of it, an hour and a half later, I'm like, Wow, this is actually relaxing. Like I need to get Sarah Merrefield: It really is. Efrain: More puzzles, right? Because when you can just forget about everything else and kind of focus on the little things, you know, and and sometimes it's because we're always Yeah, Sarah Merrefield: Yes. I'm getting a zone like that. I love it. Efrain: yeah. So I hear you. It's like sometimes you just have to really turn it off. And it is putting the phone Sarah Merrefield: Yes. Efrain: down, it is just quieting the noise, it is just kind of, you know, being one with nature. I think so many times we've lost that, right? I can imagine, Sarah, Sarah Merrefield: Sorry. Efrain: you were you were the individual riding the bike outside, scooters, whatever. Sarah Merrefield: Yes. Efrain: Enjoying the outdoors and and I think that's what's kind of being lost nowadays is really the ability to be outside and soak that in. There's there's something beautiful in that for sure. Sarah Merrefield: Sure. So important. Yeah, that's for sure. Efrain: how do people get involved? How I mean we talk about not just donors, but maybe volunteer needs, maybe there's people to donate other things. Like how do people get involved into what you guys are doing? Websites, socials, all that good stuff. Sarah Merrefield: Yeah, so the Thomas E. Smith Foundation were found at just Thomas E. Smith Foundation dot org. You can see about our coming events and so forth. But as far as learning more about just sp the spinal cord injury community, people living with per paralysis, people living with mobility impairments, it's important to just pay attention, look around, make sure you think about the environment. I was part of a committee for a school thing that my children are doing and they got they were building a new wing in our school. And not one person had thought about, okay, what if a child has a wheelchair? And I'm sure it would have come up eventually, but we can all be advocates, even if it's in our space, in our homes, in our schools, in our communities. And September is Spinal Cord Awareness Month. So in every community across this country, there are so many celebrations, policy events, things of that nature. And if you want to get involved with your local community, it would mean all the difference. Cause there again, this is an issue that. really isn't front of mind for most people. And there are so many organizations doing good work, especially in the advocacy space, policy change. Get involved with things that are already happening in your community. It makes a huge difference. And so whether you're volunteering to support advocacy efforts, supporting us financially, or coming to events, even fun ones like our concert, it makes a huge difference not only for the financial benefit to the organization, but also just being aware of the issue. So coming to our event, you'll see that everyone in wheelchairs are in the front. That'll be a different experience for folks. And Efrain: Yeah, yeah. Sarah Merrefield: so I I invite everyone to just really think about things in different ways. And when you see a wheelchair go by, just know like, I will not accept that this space is not accessible. I will not accept that that's not covered by insurance and be part of the change making agenda that we all should be a part Efrain: Sarah, thank you so much for the information. and and what you're really doing to make a difference. Sometimes we don't realize we're just trucking along and we're kind of, you know, almost like those blinders on. Don't know what's going on. We just have this mission. and sometimes from the outside, you just gotta kinda receive your flowers. So thank you for what you're doing. I actually know someone that's in this space, actually just had surgery his whole life. He's been wheelchair bound and just received this surgery where they tried to straighten up his spinal, put screws on him and all these like. Sarah Merrefield: Wow. Efrain: I've s he's fifteen years old now and he's gone through so many surgeries. And so when you talk about that, I I am very well aware and seen it firsthand. And I think I've learned a lot today just by talking to you. I'm actually going to pass this organization to his mom because his mom has has also had to kind of like, you know, fight this battle alone, right? And find where her son and the schools Sarah Merrefield: Yes. It is a fight. Yes. Efrain: and and where could he still live this normal life, you know, without Sarah Merrefield: Exactly. Efrain: hindering him. So What you guys are doing, I I I hear it, I see it, I live it, and I truly appreciate it, Sarah. Sarah Merrefield: Yay. Well, thank you so much for having me. What you're doing is so important and sharing these stories means all the world. So we really appreciate you telling our story and having me here today has been so fun. Efrain: Yes, ma'am. Well, appreciate you. My name's Benny Frain. This is Sarah. Make sure you guys check out their website. Can imagine their socials to continue to just make impacts in a space that people sometimes just don't realize is happening around them. All right, I'll catch you guys on the next one. Latest. Sarah Merrefield: Right, thanks so much.