From Real Estate Queen to Rare Disease Advocate | Megan Schomer's Mission

[0:01]  [music] Welcome back to another episode here on the Horton Hustle podcast. Our next guest is Megan. Just telling me she's come back from Hawaii. Listen, I'm a little jealous, you know what I mean? But I'm super excited to have you here. And at some point you were at the top of your real estate game and then your son was born with this, you know, rare brain malion and then the rest is history. Can we kind of start there, Megan? Like you were actually in the corporate, I would say corporate world and ended up in the nonprofit space. Did you always care for nonprofit or was it your son that really kind of made that jump for you?

[0:46]  Yeah, I was a top producer in real estate. Loved it. When you're in real estate, you're a business owner because you manage all of your own portfolio and everything. So yeah, going from for-profit to nonprofit was a big switch, something I had never necessarily intended to do, but that's just what I felt called um to do. And I um I always have volunteered. I mean, since I was a child and when I was a teenager, I would go to nursing homes and spend time with elderly, singing with them, reading books. I've worked with the homeless population. I worked with the Salvation Army. I've done a lot of volunteering. It's always been important to me to give back and so um when this situation happened to me and I just saw how many gaps there were I knew I wanted to do something about it.

[1:34]  And his organization is something that you actually started you became a part of. I think you launched this if I'm not mistaken on your own. Is that correct?

[1:41]  Correct. Yes. When I had my son I realized that when you have a medically fragile child I had for instance an ICU in my home. My son was total care. He had every kind of seizure imaginable. It was very intense roundthe-clock 247 caregiving. And what I found is when you're up at the hospital, you you receive a lot of support both from healthcare workers and charities. But when you're at home with a complex kid doing all these cares on your own, you're truly on your own. And so I I just felt that, you know, why why aren't there any charities that come to the home and meet families where they are, especially families in these crisis situations? And so that's what we do is um I am the founder of the organization and started it from the ground up. There isn't anything like our work. I always believe that in the nonprofit world, you should try to find um a cause you align with and work with them, but there were there just wasn't anything like what we're doing. And so I felt like it did need to be its own um nonprofit.

[2:45]  I love that you mentioned how families will often feel invisible when they leave the hospital walls. How do you what are some of the services that you guys off offer these these families so they don't feel alone anymore?

[2:56]  Right. So we do a few different things. We go into their homes. We do house cleaning. We do lawn care, snow removal. like to take just something practical off their plate so that they can have a little bit of respit. Whether they use that time to take a nap, spend time with their medically fragile child, spend time with other children, date night, whatever it is, we just want to give them a little bit of breathing room um and provide something that most of our families cannot afford um on their own. And so we do those inhome supports. We also do support groups in our office. We do those four times a month and they're hosted by a licensed clinical social worker. We also have an office. She has an office within ours so the families can come seek individual support as needed if the groups don't work for them or if they need more specialized care. We also do community activities to bring the families together. So we host six large family events a year where we will do things. We partner with the YMCA, shut the whole facility down so that our kids can come in and go swimming. I mean, you can't typically take a large amount of children in wheelchairs to a facility like that and have it be accessible. And so, all of our events are very accessible for families and it supports the entire family. We're a holistic organization. We believe in uplifting the entire family. So, we want them all there, all having a good time. And then we do um an event for just our moms around Mother's Day where we take them pamper the moms. And then around Father's Day, we do an event for the dads or male caregivers. we take them and do something fun like axe throwing and pingpong and um they can just go and hang out with the guys and just find community in that. And then we've also identified that the siblings face their own challenges. They're often invisible in these family dynamics, not intentionally. Um they're they're labeled as glass children. They're often looked through just because their siblings needs are so high. And so we've created special activities just for the siblings where they can be amongst other siblings that understand what they're going through and can find support with each other that way.

[5:01]  Jumping from the real estate where you were a top performer going into the space of nonprofit, did you feel the challenges of really trying to raise funds for awareness when it comes to what you're doing?

[5:13]  Yeah, absolutely. That was something. It's when you come from for-profit, you have a product you're selling or you have, you know, something that you're do a service you are providing. When you're a nonprofit, you're just kind of at the mercy of the social climate of donors, of granters, of just trying to figure out where all that funding comes from. I initially leaned into my real estate contacts because that was just natural. Those were people I already had long established relationships with. Um my first board were many of my office mates or former clients and um initially I had approached a builder with this idea of the organization like as a pilot. Um I did this wasn't started like a traditional nonprofit. It was started much more like a tech startup. We really wanted to pilot and see what the need was. I didn't know how many other families were out there. I knew there had to be others. I just didn't know any. And so we really wanted to pilot see what the need is. see if the things I thought would help them would actually help them. And we're always open to um change and we have done changes over the years based on what the highest need for this population is. And so that's where it really started.

[6:23]  And how many families are you ser guys serving now?

[6:25]  We have around 220 families on services, monthly services at this point.

[6:32]  Wow. From nothing. Started from ground zero.

[6:35]  Right. Well, and that like I said, we're holistic and so we uplift the entire family. So when you look at that 220 families, that's over 900 community members that receive support from our organization every month.

[6:47]  Wow. And is this only in Idaho? Have you guys expanded further than that or what do you guys look like on that level?

[6:53]  So far, we're just in Idaho. We're trying to manage growth here. The need was much larger than we realized. Um, something we also do is a lot of advocacy. I didn't mention that yet, but we do a lot of advocacy. And sitting on the local children's hospital um committees, I found that when we started this organization in 2017, there was around 1,800 families that needed our services within their system. And now there's more than 7,500. So the need from the time we've started till now has grown so much. We've just tried to figure out, we've talked about going to, you know, Salt Lake, Seattle. Both of those places have requested us um show up there. We get requests from all across the country and actually internationally for support. We're just not in a place to do that yet. We really wanted to iron out this model there. Like I said, there isn't anything like it. And so feel like we have a really good sustainable model at this point. And we are looking to expand to another children's hospital. I think that we the trajectory and the pie in the sky dream is that we want to be at every children's hospital across the country. Again, there's nothing like it and it's a much needed support. We have um we're partnered with our local Ronald McDonald House. We have kind of a similar mindset as far as our services go. They kind of offer services within the 30 mile or outside the 30 mile radius and we offer services within that radius. And so we collaborate with them and they're a model we would look up to um going nationally and so a lot of that comes from a partner. We kind of need that big national support system to be able to do that.

[8:29]  I love that you're even thinking about partnerships. I think it's so huge in the nonprofit space where so many people um just feel like I just need to do this and they forget the partnering up. We could really do so much more work when we come together. Ronald McDonald's really good organization. I've been able to work with them and I've been able to even have some individuals for the Ronald McDonald's on the podcast and it's always cool to see what they do and how they do it. So, um, having that partnership definitely gives you guys a lot more credibility as you guys move forward. My question is what does the pain points look like as you're trying to go from this real estate to go and start a nonprofit and as you mentioned something that's going to be global like this is not just something in my own backyard. It's something that I know everyone needs throughout our world, our country,

[9:09]  right? Well, a few of the pain points are financing. I mean, where so many government programs are being cut, um, state, federal, there isn't really any funding for our work in the grant space in that sense. So, it's finding, you know, those partnerships, those collaborations to be able to do our work further. We're we're partnered with the YMCA. You know, we try to spread our funding and be as efficient as possible. We use a lot of technology to have low staffing just so we can make all of our dollars stretch. So um I think funding is a pain point. I think that in America we are cure-based and what we do is accepting families as they are as their children are. Um there is such a need for supporting this population. Everything from our work to pediatric respbit homes. Um if you look at like the UK they're about the size of California and they have 54 respit homes for children. The United States has five. We just tend to look away from hard things. And so that's why our organization, we try to bring a light and shine a light, but also um be a light for these families because I think that's a pain point when you know people are really focused on children's cures and fixing things. We just accept them as they are. And that can be hard I think for a lot of people in the Western world. When I think about all the years you spent in real estate, um, what did that prepare you for? Other than the partnerships that you've created and and because that's that's huge, but what do you think that prepared you for when you had to take that leap into this nonprofit space? I can imagine there were so many lessons that you've learned on the other side.

[10:50]  Well, I think not just real estate is prior work, prior jobs, things I did even as a teenager have, I feel like, prepared me for this moment. I worked for a catering company. Now I run events with three to 400 people. So just you know being able to plan an event on that scale. I lean into that catering background from when I was a teenager and I worked in customer service for many years. I worked for corporate America and then into real estate. It's just they all have their own challenges and I I think the thing about real estate that I loved was being an advocate for my clients. I worked for them and so I would go up against any builder. I didn't care who you were. I was going to fight for my clients and do the right thing and make sure their needs were met. And I feel very same very much the same about this is I know what this population's needs are. And so I do go to our local health care systems. It's kind of given me that strength, that voice, that confidence that I can go into these rooms and, you know, let people know what the needs are and bring that to their awareness. Also, I think it helped me too having a a lot of nonprofits are led with the heart and this is very much led with the heart. However, there's a business sense behind it. When I approach a uh health care system, when I approach a business about how they could better serve or when I approach politicians about policies that are going to impact these families, I look at it from their perspective, too. And I understand, you know, these companies are here to run a business. Here's what the need is. How do we meet in the middle? How do we make it better?

[12:27]  You mentioned about going into some of these rooms. I can imagine the conversations get a little hard. Um, what's the hardest conversation you had you've had in a committee or hospital meeting as a parent turned CEO cuz at first you were a parent that was dealing with this. Now you're a CEO dealing with this at a bigger scale to make sure that your son's legacy continues to to, you know, um, live on, but also that other families understand that they're not alone in this space. Yeah, there's there's been several challenging conversations. I think one being our local health care system has it's a children's hospital, but they did not have pediatric paliotative care. So, meeting with executives and kind of letting them know they missed the mark and that this is a program they're lacking and not knowing how that was going to be received, but just it was on my heart and needed to be said. And they welcomed me with open arms. They were like, "Wow, we had never thought about this being a need." And part of it was they had had all these different diagnoses siloed out. So they had like the cancer kids and the musculardrophe kids and the neurological kids all separate. And I said but they all would benefit from a paliotative care program. And they were like

[13:31]  you know what let's do a needs assessment. Do you want to be a part of the process? And so I was there from needs assessment to um all the meetings deciding what that program would look like all the way into interviewing the doctor and social work. the entire team I was able to help be there for the interview process and now there's a functional pediatric pali of care program in our valley and it's incredible the support our families have received from it and just how much their quality of life has improved. I think another challenging one too was approaching the funeral industry on how they could better serve their pediatric population. The funeral industry in general is geared towards one population and that's elderly and there's a lot of improvement that can be made in the pediatric space and there really wasn't a lot of reception there. It wasn't a warm reception. It was kind of like we're the experts. You don't know what you're talking about. And thankfully the National Funeral Foundation reached out to me and said,"Well, if we can't get the providers to come on board with serving better, let's empower the families." So, we actually wrote a book on how to plan a child's funeral. And it's like a journaling um book. It's it's beautiful. It's on our website if anyone needs it, but it's been distributed over 25,000 times. So that is just kind of a small thing that came out of do better. And you know how many other families have felt empowered to have the service that would represent their child because of that.

[15:04]  You're truly doing some amazing things. I mean what a career change and really for so much better. Um you know we really think about it. Is there something that you wouldn't have said five years ago that you can say now being a little bit more comfortable in the space? Um, I do think that the the way nonprofits are traditionally built is probably needs to be re-evaluated. I do think that so typically a lot of nonprofits, somebody has an idea from their heart and they build a nonprofit around it. They don't know if it's helpful. They don't know if it's going to be received. They build this program. They get this funding. They might even be replicating other work. And for instance, in the state of Idaho, there's 8,000 nonprofits. That's excessive. Like a lot of there needs to be a lot more collaboration. If you're doing something someone else is already doing, you should just partner with them and maybe find a way to incorporate your legacy, your child's legacy, something like that. But I think that I how we've started it has is showing. And I've actually met with professors at our local university here because they're just kind of like how did you build this without our traditional model and I was like I looked at tech startup. How do you lowbudget assess a need find out this is actually going to serve and help people and then you build the program around what is actually going to help. I mean, I've sat on calls where um one of them was a funding call and the nonprofit was started with great intention, but they weren't getting people to um accept the service they were offering.

[16:40]  And the person that started it, I just looked at him and I said, "Well, when you were in this situation, would you have used this service?" And he said, "Oh, absolutely not." And I was like, "Well, then maybe you want to rethink how you've built this, how you structured this." just like I guess more reflection on I think that's what I would say is just that co you know collaborate first if you can and if not make sure you're providing a model that's actually serving people in the way they need they need to be served not in the way you want to serve them

[17:10]  I love you say that part we talked about it a couple of times but the partnership in um spaces of nonprofit and giving back I sit on the board of a foundation it happens to be at my old high school and there's so many things going on like you have the PTSO you have another club, you have the Edgewide High School Foundation and we're all doing the same things and targeting the same people and I mean just recently we're we're hosting a gala coming up in November. Well, guess what? One of the other programs is also hosting an event at the same venue reach you know and it's like how do we come together to do this but it is collaboration is people understanding what collaboration means um as well. Uh it's very frustrating because you mentioned we're all in it for the same purpose but we all want to be better than the next and it's like come on you know so

[17:57]  I think collaboration is key in the nonprofit space especially given our local well national climate as far as it's it's really tough out there for a lot of nonprofits and so let's join together and do better.

[18:11]  I love it. So if you could kind of talk about the um organization, what is the name of it? Rares. Raise for rare. Is that correct?

[18:19]  Raise for rare. And the name um actually was a it was not raise for rare initially. I wanted to find like what was our kind of like a makeaish name? What is that national name that would really show what our work was? And we just couldn't figure out a name. But I just had the calling and I'd had the meeting with the builder and some other funders and I was just like we can't let a name hold this organization back. So initially it was named after my son and his name is Corwin which Corwin means I had chose that name because it means companion of the heart and I didn't know how long he would be with me but I knew he'd always be in my heart. So it was called Corwin's cause initially and from there I we had um it's called Idaho Giz. It's a a big statewide day of giving here and I had invited some of our families out and they wanted to come out and advocate for the organization and kind of just be seen. I think that this organization empowers these families that are generally all isolated and siloed out to come together and just have this voice and be seen and be comfortable with it. And um I was watching them tell their stories and people were always like who's Corwin and they would tell Corwin's story and then they would tell about the organization and then the supporters would kind of move on. They weren't they weren't there long term as far as they just kind of wanted to hear what the organization was and what's the meaning behind the name and our family stories were lost and that's when it was on my heart. I was like, we have to change this name. And so most of our children um have a rare disease which includes all forms of pediatric cancer, heart conditions. Nearly all of them have a rare disease or have survived something they most likely would not have. Um we have some non-fatal drownings, things like that. So some very rare tragic accidents. So they're all rare in their own ways. And the sunshine has always been a big representation of the organization. And so we we just thought rays, right? like rays of light on this rare population.

[20:15]  Yeah, I love it. I mean, really, when you think about something like this, you really got to think about all those different things. There's some some amazing things you guys are doing that you guys do annually um for for the some of these kids. Um Santa rides, right? A wheelchair friendly pumpkin patch. Are you guys doing that actually currently when it comes to the pumpkin patch?

[20:32]  We just did that um a couple of weeks ago um at a we we have an amazing pumpkin patch here that has gravel line pathways, so it's very accessible. They have plenty of handicap parking. That's a big thing when you're looking at bringing a couple hundred people with wheelchair vans. Most places only have a few handicap spots. So, this place has abundant handicap parking, but there's pumpkin patch. There's, you know, all sorts of There's a corn maze. They can't really get through the corn maze so easy, but there's some smaller activities. Um, they have like a big bin of corn kernels that the kids can sit in and feel. and we had pizza delivered and they just had a great time picking out their pumpkins and there again there's a petting zoo there. They could pick flowers. There's just an abundance of activities. Yeah.

[21:21]  Yeah. It's really helping them um with joy, right? Just when they're when you're in that space of pain and loss, um it's help bringing people that joy. How do you how do you measure that actually? How do you measure the value of joy when you're doing this type of um work? Um, I think we get a lot of feedback. We get a lot of thank you messages, letters, emails, just seeing when you're at one of these events, you see the joy. You see the smiles. You see the families hugging each other. Um, they've really turned into family, a lot of them to each other. They'll watch each other's kids when they need, you know, a break or they um, just again hearing how much it impacts famil family's lives. We had a family that came they moved to our area um for treatment for their child from another state because they weren't getting the care they needed. And when he passed away, I asked if they were going to move back to the state they came from because they had nobody here. Their family all was in this other state. And they just said, "No, this community means more to us than any family we have." And so they chose to stay in this area just because of this community even after their son had passed.

[22:34]  I mean you definitely as a leader bring bring people together and you allow people to feel seen and heard which is why they continue to come back right.

[22:43]  But in the same space as you building this as a leader there's imposter syndrome. There is the who am I to to sit here?

[22:51]  What does those moments look like as you're building like who who's helping you? I mean, I can't imagine you weren't going to Hawaii during these times, right? That would have been an easy Hawaii, [laughter] right?

[23:01]  But what's happening? Who's pouring into to you as you're trying to pour into others?

[23:06]  Well, for the first few years I did this, I just did it out of my own funding, my own time. Um, now we have, you know, paid staff and everything. But in those early years, I mean, I was working 80 hours a week to get this going and for and I wasn't getting paid. I was just doing this because I had to give purpose to my pain. And so that's really what drove me and my son taught me to be an advocate. I had to a lot of times stand up and have hard conversations for what was best for him. I think that really helped with imposter syndrome. When you have a medically complex child that even the experts don't know the answers to,

[23:43]  you have to really lean into your gut and say, you know, we were put in a position, which is why paliotative care was so important to me was we were put in a position where we were told he needed an intervention or he would die. But then another specialist said, well, but if you do that intervention, he will die. So these two doctors put us in the middle of this impossible decision and we're like, you decide, parents. And so that's where paliotative care comes in. They do goals like how many interventions meet the goals of the family. Like for me, I wanted quality of life over quantity. I really wanted him to have a full abundant life and live life to the fullest and not live in a bubble, but for who knows maybe how long. I wanted to go make all these memories and spend time as a family and experience life. And so I feel like that prepared me for these hard conversations and gave me that internal strength is remembering why I did it for me and that not everyone has that, you know, ability to have that voice. I guess when I feel like I'm speaking for the voiceless, it kind of makes me feel invincible of like these kids can't talk but I can. So that really helps. And then I had a meeting where I was interviewing um the doctor for that pediatric paliotative care team and it was all executives. There were five people. It was all executives, CEOs, doctors. And I asked one of the doctors, I said, "Why? Why am I here?" And he said, "Because you'll ask the questions we can't ask and you're here for a reason. So just accept that and you know, speak what you need to say and ask the questions you need to say." If the Heart and Hustle podcast has ever sparked any idea or made you think differently, do us a favor. Make sure to guys share this, post it on LinkedIn, or even text that nonprofit friend that you just have. Whatever works. This is what keeps the conversation going and allows us to just grow this community together. Seriously, we appreciate you. And all all the things that you're talking about obviously led to the CEO of influence award.

[25:46]  Yes. What was the moment when you get that call to say, "Hey, this is what you're you're getting." What are you feeling? What are those thoughts?

[25:53]  I mean, it was an honor and it's it's so amazing. That's obviously not why I do the work, but it is I am so grateful to be recognized for it because it is it is my heart in action. And so to see that awarded is it's incredible. I was honored to receive that. I also received um accomplished under 40 a couple of years ago which it's 40 people in the in the state that have achieved a lot in that you know and through 40 and so it's just amazing that our community recognizes that and appreciates it.

[26:26]  Yeah. I know huge as you mentioned this not what we do it for but when you do get um acknowledged it definitely gives you even more energy more fuel to continue to do the work that you do because now you realize people are watching people are seeing the work and the more that we continue to do this not only the more awards but the more people that we get involved to to you know this in your case your organization uh Ray Feres I love it I love that you're in the space I love that you made this huge um mindset shift to get you out of the real estate world to put you into the founder space. Um, when you first said, "I can lead this," how do you silence the voice that said,

[27:04]  "Can you really?"

[27:06]  What does that look like?

[27:08]  Um, well, lots of therapy. [laughter]

[27:10]  There you go.

[27:11]  The therapy I just to be honest, uh, that's helped a lot.

[27:15]  Um, I was an award winner in real estate, too. And so I think that anytime you're recognized for accomplishments that just receiving it and you know uh celebrating the small achievements, celebrating the small wins really allows you to say I can do this. Right? That first meeting with that builder was scary to go in and say I need this much money. Here's this idea. And they were amazing. They were like you know what we're actually looking to partner with a children's charity. This is right up our alley. how much would you like kind of a thing. I mean, it was just the every single one of those interactions builds that confidence and that strength to go have that next hard conversation. And then same with advocacy. You know, the first time I met with executives at the health care system, I was nervous. Now we're firstname basis. They come to my events. Um politicians, same thing. business owners. You know, we have an equipment distributor that I've sat down with and had some hard conversations with and then they brought me back to train their employees of who is on the other side of that phone that they're serving to help their employees better understand. And so just seeing the change that's being created with one voice and it it's amazing and an honor. I don't want to cry, but my son didn't have a voice. I mean, he could coo and like make noises, but he didn't actually ever say a word. and he's changed the world in a lot of ways.

[28:39]  I'm I'm a big believer that life happens for reasons at times while we may not know why, right?

[28:44]  Um your son will never be forgotten. Your story continues to be told, right? Like that's what I I love, Megan, because so many people could

[28:52]  kind of deal with what you're doing and um still be lost,

[28:56]  you know, in in this space. And I that's why the next question I actually ask you, there's so many people that are fearing to leave safety. you left safety because you stepped into what was a calling, right?

[29:08]  Um, what advice do you give somebody that's kind of stuck there?

[29:12]  Yeah. I think that if you have a calling and you wake up every day and that calling is the first thing to come to mind, do it. Follow it. [snorts] And a lot of it is have those meetings. Set those hard meetings. Have those hard conversations. I mean, I also have an amazing group of friends and supporters that lift me up when I'm down. you know, they hold my arms up and push me back into battle kind of a thing. Um,

[29:36]  and it's just

[29:39]  when when you have a calling, you'll know. And I think that even if you don't necessarily have a calling, living on purpose, it makes a difference. And you'll find that maybe you don't know what your purpose is, but living on purpose will lead you to that.

[29:56]  And it it seems crazy. I think I'm in this space right now even u with this foundation sometime I think to myself I've been there for six years and I ask myself or I think to myself when things get hard why am I even doing this

[30:09]  and I [clears throat] have to remember it's not even about me

[30:11]  right

[30:12]  like it's not about us it's truly about every other person every other family that still has that chance to fight I just want to be in their corner I want them to be able to to live a life that they didn't ever expect because they didn't know resources existed and you are that for somebody, right? What some people are going to feel the impact that you created today, Megan, and and you would never even know

[30:34]  that it happened, right? Cuz you just planted that seed and it's up to really the communities, to our listeners to um continue to water those. So, I ask you what all the listeners, whatever their titles or their means are, um how can they make an everyday move to support the medically fragile families that we're talking about?

[30:51]  I think showing up is a big thing. Um, I read the book Option B came out the year I was building the organization and there's a great there's a lot of great stories in that book. It's written by Cheryl Sandberg and um there's a story in there that reminds me of something I had is when I was up at the hospital with my son, there's a lot of people that say things like, "Let me know how I can help. Let me know this. Let me" And you shift the burden to the person going through the difficult time to figure out what it is they need. Communicate with you. That's honestly not helpful. And we all do it. I've done it. The whole let me know if you need anything. [snorts] What was helpful was I had an uncle that would say, "I'm coming up to the hospital. I'm bringing lunch. Would you like a sandwich or salad?" I knew he was coming. I knew he was bringing food. I didn't have to decide anything. I didn't have to communicate other than what it was I wanted. And he showed up with it. And so just kind of showing up. If you see a neighbor struggling, shovel their sidewalk. Or if you have if you know a family that has a medically fragile child and you have some time to commit, say, "Hey, I have an hour today. Can I come over and fold some laundry? Can I come over and do some dishes? Is there anything at the house that I can do? Can I mow your lawn?" Whatever it is, just find something really practical that you feel you can do well and do it. Or if you just say, "Hey, I would like to bring you dinner. Do you have any food allergies?" And just say, "I'm coming at this day on this time." And just show up.

[32:17]  Yeah. Huge. You are right. in a space like that, can you even think of anything else outside of yourself at time,

[32:24]  right? Yeah. You're just trying to survive and it's well-intentioned and like I said, we all do it, have done it of the let me know and I just find it so much more valuable to just say I'm coming. I'm bringing something, would you like a coffee? Would you like a tea? You know, I'm on my way. So, it's not changing my mind. I'm coming to see you and support you. What is it that I can bring that would be of value to you? I love that. And it always goes back to it's not what you say, it's how you say it. In this case, it's how you it's how we kind of give back. We want to help,

[32:57]  but you could say it very differently where really becomes helpful versus just another burden on somebody. Um I feel like you called me out, but you said we [laughter] all

[33:07]  I was say I've done it. It's just and you know, I have I have a friend right now going through something incredibly difficult that I've never gone through and I really am at a loss. And so there are times that I just I do what I can, but then I also end it with really, you know, I am here at any point. And also another thing to do is anyone going through grief or a hard time, send them a send them a text that just says you're thinking about them, you're praying for them, whatever that looks like, that you care for them, and there's no need to respond. You just wanted them to know you were thinking of them.

[33:38]  And just take that pressure that because when you're overwhelmed, the last thing you want to feel like you have to do is respond to all these messages. just, hey, I know you're going through a hard time. You don't need to respond to this. I just wanted you to know I'm thinking about you.

[33:50]  I love that. What's next? What's next for Race for Rares? I know we talked a bit a little bit, but in terms of scale, impact, and culture, what can we expect for the organization?

[34:00]  Like I said, we would love to be at Every Children's Hospital. I think we'll expand regionally first, probably Salt Lake being the next Children's Hospital, um, followed by Seattle. It's really um we're building our five-year strategic plan as we speak. So, we've achieved the first five years of our strategic plan and we've checked off almost every box with the exception of expanding to another location. Part of that was COVID, part of that was um funding and then realizing how fast our community I mean we are one of the fastest growing states. So, we're an exception in that. You know, it's kind of hard to scale to other areas when you are receiving so many new patients just in our area.

[34:40]  Would you say you achieved or exceeded? Which one?

[34:43]  Um, exceeded in a lot of ways. Yeah.

[34:45]  There you go. There you go.

[34:46]  There you go. That's imposttor syndrome. [laughter]

[34:49]  Yeah, we did. We've achieved so much and I mean completely changed the climate around this. All of our local media is very aware. Um, recently our state removed paid family caregivers and they had amazing stories from our families to be able to use and broadcast and to advocate and to take to politicians and um [clears throat] it just it us being advocates for our families helps them be advocates for themselves too.

[35:16]  Yeah, I love this. I'll leave you with this last question as we wrap this up.

[35:19]  You built a nonprofit after your son's life and loss. What's one fear you still carry into this work? something that you refuse to actually um let hold you back.

[35:29]  That's a good question. I think it's that same thing as when I am struggling that it's not about me, right? It's about who we serve and that whether me showing up and doing this 900 plus plus employees and contract I mean probably over a thousand people count on me to show up for this job every day because it's that lifechanging. And so just leaning into that that sometimes I fear that I'm not strong enough to continue. I mean this work is heavy. It's very heavy. It's heavier than people realize. I mean I sit at bedsides. I go to a lot of children's funerals. So sometimes that that work can be very heavy. So just if I'm strong enough to carry it and then remembering why I'm doing it.

[36:12]  The why. That's the most important [clears throat] part is always the why,

[36:15]  right?

[36:16]  Um

[36:16]  where can people find more of the organization? Are you guys on social websites? What does that look like? Oh yeah, we're on all the social media platforms. We have an amazing website that has stories. We have some great uh videographers that come in and do like we have a day in the life of a family. So if you want to go see what it's like to live as one of these families, we have a whole bunch of different perspectives. I'm just getting ready to roll out. Every year at our gayla, I do a different feature. So this year was glass children. It's the siblings. So we have a couple sibling videos I'm getting ready to put up on social media. But if you look back, we have a whole catalog of just dad's perspectives, mom's perspectives, um just the whole family and what that's like.

[36:57]  I love it. Well, Megan, we thank you so much for being your true authentic self and really giving light on something that people don't have a convers even idea or have conversations on. Um and may you continue to exceed what you're doing. You not not just getting there, you going to exceed because you already exceeded. We thank you so much, guys. Guys, and if you're still watching, make sure you guys do like, share, and subscribe because these are the stories that we need to get out. There's so many things happening in our own countries, in our own backyard, and we ask ourselves, where could we find the help? Well, Ray, uh, Rare Ray for Rare is what is it called?

[37:28]  Yes.

[37:28]  Did I mess this up already?

[37:30]  I know it's a mouthful.

[37:32]  I love it though. I actually do. But, uh, make sure you guys go ahead and check them out on social media. My name is Era. This is Megan. We'll catch you on the next one. Lers. Thank you.