Hope 4 Helen

This one matters! 

Transcript

0:17

Welcome to the Kindness Chronicles, where once again, we hope to inject the world with a dose of the Minnesota kindness that it desperately needs. We had a big weekend. We all had a really big weekend. Yeah. Big Minnesota weekend. Big Minnesota weekend falls coming. Feels good. So in the studio we got Michael Dempsey. Hello Michael. Hey, good to see you guys again. Steve Brown. Hi Johnny. Clueless fame. Yeah. Kevin Gorg is not able to be with us'cause the Minnesota Wild is up at, uh, they're playing somewhere maybe at, maybe they're playing at the X or whatever we're calling it these days, but he's not here. And our, uh, 55-year-old intern slash engineer. Is helping. He's a full engineer. Um, Jeff, he's a full engineer. He's a full engineer. That's fantastic. And we have a guest in, we're gonna save him for just a second, but Michael, you had a blessed event in your family over the weekend. Wow. It was a, yeah, it was a big one. My oldest daughter, I have three daughters. Just as a reminder, um. She got married. Oh, she got married in Chicago. In Chicago, yeah. Just north of Chicago. Is that considered a destination wedding? Yeah, it, well, it may have, may have well been considered that a very small affair. It, I think there was, um, less than 20 people. Wow. At the, uh, yeah, at the, at the event. And then we all, um, went from there to dinner. It was great. It was wonderful. It was. It was exactly what she and her now husband wanted. Uh, in the Midwest we have these, we have these weddings and it's this big to-do, and. So often it's what the parents want, right? Mm-hmm. And um, it becomes this really big, very stressful situation. Expensive and expensive, right? Yes. It's a production. Yeah. Sometimes little too much. Yeah. That's a different, uh, we'll talk about the expense later, but, um, I. I'm just committed with my three daughters to just let them, whatever you guys wanna do. Very nice. However you wanna do. So yeah. Anyway, it was great. We got back last night. Yeah. My son is, uh, is getting married in August of next year, and, uh, we've decided just to let his fiance decide everything because she's gonna decide everything. Right. And we're gonna be okay with that. Right, right. Anyway, Steve. Yeah. The red carpet, the return to the red carpet, yes. When was the last time Johnny Clueless played at the red carpet? The red carpet is a bar in St. Cloud. Mm-hmm. Michael and I know very well, very well. Um, the band had played there. We started there in 1992. Wow. So we played there for many, many years. We played many, many nights. Uh, they made a lot of money on us'cause we sold a lot of beer with our drink toast and stuff. But the last time we played was about 20 plus years ago. My daughter, I think, was just born and maybe we played and that was it really. That was the last time we were there. So this weekend was a big 45th anniversary party for this bar. It's been around for 45 years. It's a cornerstone of the St. Cloud community. Um, it's kind of where at the end of the night, in, in, in college in the nineties, it's where you all kind of converged at the end of the night. Yeah, that's right. Yeah. Yeah. So you go to, you hop around a bars, but then there's always a great band or something happening. It's kind of the, and then at the end of the night, everybody spills out in the street and it's just this crazy thing. Well, it wasn't quite like that, like the old days, but we played there this weekend to celebrate their 45th thing. They invited us and a lot of the, uh, a few of the other bands from the, from the nineties that they really enjoyed, these two, uh, owners, Rick and Gary are retiring as well. Oh. So it was a big appreciate, uh, they had an appreciation for past bartenders and waitstaff. So all these familiar faces were there. Not to mention all of the band, uh, Johnny Clueless fans from the nineties all coming out. These, my 50 some year olds coming out acting like they're 21, kind of 21 years Pathetic. Do you think? No. It was, it wasn't pathetic. It was beautiful. It was a beautiful thing. It was, and it was. Michael, you know, I had moments of thinking, were there walkers or anything like that? No, no, no walkers. Okay. No. Um, in fact, my, my kids were there. My, my kids and their friends, these 22, 20 somethings, they are now getting to be like really interested in the band. They've seen us now mostly at the dugouts. So yeah, they all came out. Clue Nation, we had, we had a couple hotel rooms across the street, so we all just had a great, my, my oldest and his wife and my two kids, my two younger kids and all their friends. Um, so we stayed up late and had fun, but they saw us and my son said. Yeah. There's something different about watching you there. We had a great show and we had tons of people and he said, I could feel there's something different here. Yeah.'cause our energy was different. Yeah. And I, and to be able to play and sing in that room again was, was pretty cool. You would've really, really liked it, Michael. But, um, I think we, I mean, we shined, we shined except I cut my finger in the first song. Oh no. Oh, no. And so, as I'm a guitar player, I'm, I'm strumming, you know, with an acoustic guitar first song. Just so excited. I think I just hit my f the tip of my finger, like my cuticle, whatever, started bleeding everywhere. Oh, sweet. So bleeding on my like ronnie lot. On your red pants? Yeah, a little red. Your red pants. It was bleeding and, and uh, it wasn't bloody enough to be cool and rock and roll. It was just enough to hurt and be annoying, but we got through it. But you played. So you're, you're, it's kind of cool. You're a warrior. People get people, I asked for bandaid, people were throwing bandaids at me. Oh yeah. Anyway, it, it was awesome. It was super fun. It was everything I hoped it would be. We were actually kind of nervous about it'cause it had been such a. A buildup. And we, it was, uh, it wasn't nailed a perfect show, but it was exactly what we do, which is really fun and engaging, and so you would've loved it. I I wish you would've been there, Michael. Yeah. Well, very fun. You would've been great. Well, you guys were there. I was, uh, making the world a better place. Wow. As I do. Wow. Yeah, of course you are. You guys are all getting hammered. I'm glad you're, you're patting yourself on the back. No, no, no. Not you. You enjoyed a beautiful Minnesota weekend. I had a great Minnesota weekend. Um, there was a, a. Program. The weekend was filled with, university of Minnesota fun stuff. It started with a, uh, a dinner at a place called Butcher's Tail, which is in downtown Minneapolis. The program was called Partners in Progress. But at that event, I met a gentleman and his wife, Dan Bour and his wife Stephanie. And, I said, I haven't seen you around these things before. Who the hell are you? And my wife asked the question of Stephanie, how do you guys fit into this? And Stephanie proceeded to tell us this story that made all of us, well up at the very least. Wow. And it's a beautiful story in what's being done in. Mm-hmm. Reaction to the situation. So I'm gonna bring in our friend Dan Bourne. Welcome Dan. Welcome Dan. Welcome, welcome. Thank you. Dan has two children, George. Yep. Who's what? Six. Six years older. George is six. And then Helen, tell us about, hope for Helen. Yeah, absolutely. So Helen's four. Oh, she's four. Okay. Yep. They're, they're, they're two years apart. Um. You want the whole backstory on? Yeah. Tell us. Yeah. Yeah. So I'll tell you a little bit about, uh, about us. So, Helen was born and, and, um, she was a happy, healthy little girl, sweet little girl. And, uh, really until three years of age, there was, uh. She was exactly that. Just, just happy and healthy and everything you'd ever want. We kind of had our, our perfect family, two kids, boy, girl, cute as can be, cute as can be. Life was good. right after Helen turned three, she had her first seizure, uh, really out of the, completely out of the blue. And, uh, a month later she had a second seizure. Mm. Both of which we were, you know, we, we called an ambulance not knowing what was, what was happening. And yeah. Uh, went down to Children's Hospital in Minneapolis and Helen was diagnosed after the second one with epilepsy, which, um. I guess is, you know, kinda makes sense. And she was put on some, some medication for, to con help control the seizures and she didn't have, uh, have any other, um, any other seizures for, you know, a number of months. So at this point you think that the epilepsy diagnosis is the right diagnosis? Yeah, yeah, yeah. And in a weird way, you're probably upset by that. Funny, funny. But as it turns out. I'd be very grateful for that. Exactly. Yeah. Oh boy. Yeah. Here we go. Yeah. Uh, yeah, it may destroyed us. We, you know, all of a sudden there's uncertainty and, and worry. Uh, but I will say the, the doctor that, uh, Helen was seeing at the time, uh, pediatric epileptologist, uh, had epilepsy as a child. Oh. And, uh, and as, I don't wanna call it common necessarily. Definitely not unheard of. Uh, he outgrew his epilepsy. Wow. And, um, and went into that field. That's why he chose to study that. And so we always kinda looked at that as a guiding light for, for Helen, for our family. As you know, this is, this is just something that, you know, blip in the road and we're gonna get, we're gonna get through this and, um. Fast forward to, uh, um, the fall. So that was in the summer. June was her first seizure. Um, and in the fall we started How, how, how many, just a second. How many years ago is this now? So, so this, I got a year and a half. So this would, yeah, this would've been, uh, June of 2024. Okay. So not long ago. Not long ago. Not that long. Very recent. Okay, got it. Yeah. No thanks. Relatively recent. Yeah. Yeah. Um. In the fall and, you know, around Thanksgiving, Christmas time for, we started noticing that there was some other things going on. She would, she would, uh, she would have these eye flutters and she would kind of drop her head at, at weird moments. And so we went back to, um, uh, her doctor and, and we're asking some questions and they said, yeah, you know, there's different seizures present in different ways and, um, you know, we may need some, just some additional medication. Uh. Uh, things continued to not make sense. She would fall, uh, just walking across a, a, you know, a wood floor or somewhere where she shouldn't be falling. And she didn't use to fall. She would, she, she would fall and she would oftentimes shake after that, uh, for a couple seconds. And, um, we started, uh, thinking, you know, maybe we need to, maybe we need to dig into this a little bit further. Mm-hmm. And so we did. So, um, I guess we're, we're fortunate to have mayo in our back, you know, close. Not necessarily in our backyard, but, but very close. And, um, we went down to Mayo and, and started talking with them, um, and. They suggested that we do, uh, a 24 hour EEG, which Helen had had a number of EEGs before that point. W what, what, what's an E-E-G-E-E-G is a, is a way that they can read your, uh, it's called an electroencephalogram. Thank you. Would've me? I wasn't gonna, I was a bio major for six weeks. For six seconds. Well, that's right though. Good thing. Good thing we have John here. Yeah, right. I was not gonna come up with that name. The measures brainwaves. Yeah, exactly. And so how did. So you wear, uh, like electrodes or a helmet? I mean, how does that, I can't remember exactly how many it is, but call it 20. They put different, um, yep. Electrodes, electros on your, uh, on the scalp. Yeah. It almost looks like a net that goes over your head. Mm-hmm. Ah, yep. Okay. So for 24 hours? Yep, we're gonna do that. Okay. Yeah. Yeah. So they super glue it on and, um, and, uh, but it's like a water soluble super glue and so they can take it back off afterwards. But, uh, we went through that and, um. Also had decided at that time that we would do genetic testing because the doctors kinda said, you know, things don't make, they aren't making perfect sense. Yeah. And we believe if we can, this doesn't look exactly like epilepsy. Exactly. If we can, if we can figure out why things are happening, which genetic testing will help, then we can recommend the, uh, the right medication and, and get this under control. And so, um, we took care of both of those in one stint and they, they said, well, um, you know, it takes a little bit to get the results back, but. Um, you should hear from, you know, hear from us in the next couple weeks. And, um, it was one week, one week later. Um, I was, uh, I was driving, my wife had already left for work. I think I had actually just dropped the kids off at school. And, uh, I got a message from Mayo, uh, from the doctor that said. Um, we, we need to talk to you. Mm. Um, we receive some results back and, um, we'll make ourselves available today. Mm. But it's, but it's important that we talk and, um, so, you know, it's heavy, it's heavy stuff. Well, I just have an outlook on life where I, where get, I guess first of all, it's your kid. You don't wanna believe something. Yeah. Mm-hmm. Right? Yeah. Yeah. Mm-hmm. And I also generally have a, have a positive outlook and, and so I didn't really allow myself to my wife actually, when, when I texted her. Um, the message sh she said, well, this, this is bad. Mm-hmm. And I said, no, let's not get ahead of ourselves. Let's, it's gonna be okay. And, uh, we scheduled a call for 11:00 AM so just a couple hours later. And, um, it was a Zoom call and we sat, my wife and I sat at, uh, sat at our kitchen, uh, the island and hopped on and, um. I would say the first time I knew this is bad was, uh, as soon as the doctors jumped on and there was a couple of'em in the room, and you could just see in their eyes like, this is, this is not a discussion is bad. We want to have, this is bad. Yeah. And um, they started out and said, yep, we, you know, we, we've received the results back and, um, this is, this is really bad. Mm-hmm. And they proceeded to tell us, uh, about something we'd never heard of before called Batten Disease, specifically for Helen. It's CLN two. And they explained what Batten disease was. And, uh, basically Batten disease is, oh, CLN two, she lacks and enzyme, uh, that breaks down waste in her cells. Mm-hmm. The enzyme is called TPP one. I believe it's Trip Polypeptide one. See, you were in case you were going to No challenge me, John, is that right? No, John was gonna, John, I was gonna say, I believe that, I believe John corrected me if wrong, but I believe that's it's people. It's Electroencephalograph and I said, gram, that's the, forget. It's, it's very technical. I would wanna get into it. I didn't, I didn't wanna correct it. Anyways, we're, let's not make light of this. My God, man. No. Well, no. So, um. She, she lacks an enzyme that that breaks down waste in her cells. So her, her cells over overpower with, with waste, and, and they die off. Uh, they let us know that this is a, uh, autosomal recessive, um, gene, which means that it, it came from, you know, both my wife and I. Wow. We don't have this in our, in our families. Nobody had ever heard of this before. Uh, just kind of, uh, happened by chance, if you will. And, and does it, does it always present early in life like this? Mm-hmm. Yeah. So, so under the Batten umbrella, uh, there's like, I wanna say 12 could be off on that exact number, but roughly 12 different CLN types. Okay. So there's CN one that presents very, very early CN two, which is what Helen has. Yep. And up, so it presents, um, between the ages of two and four years old. Okay. And it, and it, and it almost always starts with mm-hmm. With seizures. Um, but on this, on this call, they, they proceeded to, to, to, you know, explain what it is, writing feverishly, taking notes, and, and, um, and then telling us what's, you know, what's to come. Mm-hmm. Um, and this is the really, um, this is the really tough part. Um, you know, they, they tell you that, uh, your daughter's going to lose her ability to talk. And she's going to lose her ability to walk and she's going to go blind and she's going to lose her ability to eat. And she's going to, um, have adolescent, um, adolescent dementia and she's gonna be bedridden on a feeding tube. And, um, and then it's gonna take her, that's gonna be the end. And there's nothing, um, there's nothing that you can do about it. There is no cure for this disease. Um, and so this is, this is your new life. Wow. I, uh, again, it when Becky asked Stephanie, so what brings you guys here? Yeah. Right. Um, never have we experienced that type of emotion. You know, as parents ourselves, and of course we pull up a picture of, uh, of Helen and she could not be a cuter kid. And you know, as sad as that story is, the story kind of flipped on itself when all of a sudden they tell us what they're doing to take on this Batten disease. And I mean, did, did you say there's like 200 people. Is all that have this particular, particular type of Batten disease, roughly? Roughly, roughly. The numbers are, are, are you think about that. Yeah. I mean, your chances are one in how many millions to get this, this terrible disease. But instead of just accepting this diagnosis, um, the borns decide, I'm not gonna swear f this. We're gonna do something about it. And what I was blown away with. Tell us about what you've done. It's really, I get goose, I have full body goosebumps when I think about just the fact that, I mean, you're not a professional fundraising guy. No. Your wife isn't. No. You both are very, obviously very passionate about this because it's directly related to your daughter. But tell us what you've done to, uh. To take on this scourge. Yeah. So I mean, you know, it takes a couple days to like get out the, you know, get out of the fog of what, what, what just happened. Um, you know, obviously you're, you're telling family, family kind of drops her, her parents down in Florida. Hmm. Um, and immediately pick up and come home. My parents are in Michigan and immediately, you know, uh, come to town. Yep. Everybody wants to support. But, uh, you know, after those first couple days we, we just said we can't, like, this is my daughter, I can't, I can't accept this. Mm-hmm. Um, the answer of there's nothing you can do about it is, is unacceptable. Uh, no, I guess there's no better way to, no better way to put it. And, and yeah, we, we are not, uh, we've never done fundraising before. Um, but we are comfortable asking for things and we are comfortable talking to people. Uh, I guess you could say we're both in, um, in, um, in technology sales. Okay. And, um, in a very, very, very unlucky situation that we're in. Uh, we're fortunate to have resources and. A network that that can help out. So we very quickly, within a matter of days, decided, okay, we're, we're gonna change this. We're going to do, we're gonna do our part. We're gonna do everything we possibly can to make sure that that outcome doesn't, uh, doesn't come true for Helen and, and for other kids that are, are battling this or, or will battle this in the future. And so we started a foundation and the foundation is called Helen's Pink Sky Foundation. And that name, uh, came. From, uh, first Helen loves all things pink. You, you'd be, you'd be pressed to find her on a day where she's not, uh, where she's not in all pink. That's what she prefers and what she likes, if I may. Yeah, so Becky first asked, why are you here? So that, that led to the first round of, uh, of makeup smearing. And then she said, where did the name come from? And then that's what proceeded the second. Phase of makeup smearing. So finish the, uh, where the name came from. Yeah. Well that's a lot of makeup, John. Well, you know, how did you get the foundation back's? Makeup we're off to, or is it just yours? It was just mine. Yeah. She has the waterproof stuff. Right, right. You know, by Maybelline, his guy liner is not okay. Enough. Back to John, stepped into the bathroom, took care of us, came out looking, looking beautiful as ever, so, yeah. Right, right, right. Um. So, so the Pink Sky Foundation, the nights that that followed, uh, for, for a number of nights in a row, the sunset was, um, was beautiful. And, and the sky turned pink. And Helen would look at it, we'd talk about it. My wife, um, looked at me one night and said, um, this is a sign from God. Mm-hmm. And, um, that became the, the inspiration for the, it's awesome. For the foundation. So that is great. That's wonderful. Um. In case anybody's wondering the, you know, the website for, for Helen Pink Sky Foundation is, is www dot hope, the number four helen.org. Um, we're gonna get to your event here in a little bit. Yeah. But can I also ask you about the, uh, so you made a connection with, uh, one of our former guests, Dr. Brandon Moriarty. Mm-hmm. Yeah. And just to remind everyone, Dr. Brandon. The first time I met Dr. Brandon, he was speaking at this, uh, cancer center advisory board that I sit on, and he comes in, he's got this long ponytail. He looks, he does not look like your typical scientist. No. And you proceed to visit with this guy. And it's like, it's just not fair. How much smarter that guy is than me kind of ticks you off a little bit. Yeah. But of all of the people that you could get the attention of at the University of Minnesota, this guy is a legit genius. Mm-hmm. So tell us, how did you discover Dr. Moriarty? Yeah, so I mean, it, it. We, we put in motion the, the foundation, it took us a probably three, four weeks Yep. To, to get everything, you know, get the website designed and, and, um, and do things right. Beautiful branding, by the way. It great. It a great branding thank website. Looks good. Yeah, it was good branding. I mean, it is. Yeah. Well, we're, we're here for, we're here for big things, so we had to, we had to do it right. And, um, the, the other thing we, we did was, uh. There's not a lot of research. There's research out there, but, but it's, it doesn't affect a lot of people. There's no money in the, in a cure, so pharmaceutical companies aren't, aren't gonna proactively go try and mm-hmm. Figure hundred people. Exactly. I, I, I hate it, but I get it so backwards. Yeah. It's here. I get it. Before you get to the connection with the doctor,, when the parents come back and you're plan, what do those conversations look like? What was the architecture around that? We know we need to do X? Does that question make sense? Yeah. The first. Weeks are, are somewhat of a blur. Mm-hmm. Um, memory of it. Uh, I'm not sure I can, uh, I'm not sure I can give you the full details on, on, on that. That's okay. It, I guess a lot of that comes down to the network. Yeah. I'll mention Steph, uh, my wife, Stephanie's brother, his name's Nick Schneider. He spent his career, uh, in technology now. Cybersecurity. Yeah. Building businesses. Yep. Uh, and very successful at it. And so he had a lot, he has a lot of the groundwork. Uh, I will say Nick is in instrumental in. The, the success and like that initial like, good for net, what does the foundation look like? Right? Mm-hmm. Yeah. So you just get on the phone, that's your first step, then you just start talking to people, right? Yeah. So that the right people like that can just start making think, getting some Exactly. Exactly. Nick had connections. Yeah. And we were able to, you know, to, to connect with somebody that could, uh, that could understand the vision, and, um, uh, was able to develop a website. able to put things in motion very, very quickly. And then you,, you have the very personal story to tell that people then are compelled to, to participate. A hundred percent. Right. But you wanna make sure you're telling as many people as possible. So yeah. Go back to now John's question. So then now you reach out and you get connected with. Who presumably looks like an English professor. He, yeah, he, um, I, I would agree with John's analysis of, Dr. Moriarty, Dr. Moriarty. He's amazing, but it took a while to, to connect with him actually. Uh, what I did is, is I just started. Doing research and any research paper I found that had, I guess this goes back to my, you know, technology, sales and cold calling, willingness. A a anybody I saw tagged on research papers that had to do with baton disease. I, I sent'em an email and I called them. And I was blown away with how many callbacks? Oh, I got back. That's awesome. I wish I got the same number of callbacks in my business sales days. Life as I do, uh, as I do with this. But I got callbacks from Ivy League school professors, doctors from doctors in Europe, from doctors in New Zealand all over. Yeah. And I would book calls with every one of'em, and I would get in and I would talk to'em, and I would, I would ask'em what they know, uh, what they think is on the horizon, what they've done, what they could do. And we, we kind of formed a, a book of, okay, here's, here's doctors, researchers that, that we trust. Here's doctors, researchers that we believe can help us, It wasn't really an interview process, but somewhat of an interview process. We talked to them, we talked to them about, uh, the funds that would be required, the time that would be required, what it would look like for them. So we gathered proposals from, from these folks that were, um, you know, if you, if you, this is what we can do for you. Yep. With funding and, I will say University of Minnesota never popped up on, any of those discussions. I attended a with my father-in-law. Um, it was over zoom, but, but we both dialed in. It was a rare disease days for the state of Minnesota. Okay. I don't wanna throw shade, but they talked about spending, a year running two focus groups and their biggest takeaways around rare diseases and, and gene therapy was that it was. Deeply meaningful. Oh, good. Mm-hmm. And I thought to myself, I wonder how much that spent, how much that cost. I guarantee it wasn't, it wasn't cheap. And it took a year of time. Yeah. And I, I, but it was deeply meaningful, but it was deeply meaningful. Yeah. Thank the Lord and I, um, so I popped in a couple times and I said, Hey, I, you know, I've never been to anything like this before. Uh, is it okay to ask questions or do we wait till the end? And they said, okay, well, you know, we do q and a at the end. Okay. You know, thank you. They were polite about it. But, uh, and then when they get, when they got to the q and a, they said, I think we all know Dan has something to, you know, question for us. Yeah. Dan, sit dog on the bone. And I just told him my, I told him the story. I told him what we'd just been through. Yeah. Uh, weeks prior and, um. And I, and I told him, I said, look, if, if, if, you know, it took you a year to, to get to what deeply meaningful, like I'll, I'll come, I'll drop everything I'm doing and I'll come talk to you any day of the week, anytime, and I'll give you the why. Yeah. Because I have the why. Yeah. And, um, and, and I luckily there was two folks from, from Brandon Moriarty lab, uh, or, or the Weber in, in Moriarty lab from the University of Minnesota on, and they hit me up on. Um, on Zoom and, and just said, you know, can, can we get your number? We'd like to talk. Yeah, sure. So I gave my number and I, and, uh, it was a, a girl named Steph Kennelly reached out to me, uh, very shortly after, and she does a lot of, she does a lot of work. She's not a scientist herself. She's actually a cancer survivor. Yep. Um, wonderful, wonderful girl. And, um, we talked that night and, and she said, you know, we haven't done anything with Baton specifically, but. We liked what you had to say and, and we would love to help out in some way. Right? Don't know exactly what that is yet. Give us a little bit of time and we'd like to schedule some time for you to come on, come site and and, and meet with us. And so it, uh, I call it a couple weeks later, we schedule time to go on. Um, days are busy, everything's going on. And, and I, and I thought like, what are they gonna do for us? And, uh, um, almost canceled The, almost canceled the meaning. Like, my time is valuable. I, I, like, I don't understand what, what we're gonna get out of this. They've never heard of Batten before. They, and, um, man, that would've been a mistake. So my father-in-law, went over to the lab and met with them. And the amount of time, I mean, it was, it was apparent from minutes into this discussion that like, this is pretty cool. They had done a ton of research. They'd updated, like, they showed us their priorities and what had been added as a priority was, was batten to seats. Wow. Like they were touched. Cool. They cared. They cared. Yeah. And, um. They introduced us to something that's called, uh, T-Cell Therapy. CAR T. Mm-hmm. And it's, uh, that's Brandon's Brandon's, that's the centerpiece of his business. Exactly. Exactly. He's, uh, he's done a lot with that. Yep. They use it to treat cancer. A lot of success. Number of other things. I mean, this group has been very successful. Yep. In treating, uh, a lot of different, uh, different diseases, um, and illnesses. And we were there for about two and a half hours. They gave us this whole presentation. Research we've done. We believe that this T-cell therapy may work and it's worth looking at. Absolutely. Where are we to say who? Who am I to say no? And uh, they gave us a tour of the lab. They spent a ton of time, again, I'll go back to they cared. Like they care and the fact that you got, the reaction that you got from all these, these physicians, people immediately think, well, they're going after the money. Mm-hmm. That's where their interest is. Mm-hmm. And the reality is, is just as you've described, these geniuses, generally speaking, would not go into that type of research if they were interested in just the money. Yeah. They are people who are genuinely mm-hmm. Motivated to find they're, they're all. Detectives and they all want to solve the c the challenge. They wanna, it's a challenge, but it's obviously a meaningful challenge with the, with the, it's so meaningful. Dan's story is like, that's, and, and you know, the situation this Batten that, that Dan refers to, I mean, there's not a lot of money in that. You talk about God's hand being on something and the fact that you did go on that Zoom call and you did take that call. And that you connected with this person and it just happens to be in your backyard. And he is renowned at the University of Minnesota and renowned throughout the country and the world. I mean, he's really already made that kind of an impact. So kudos for, hitching your, uh, your objective to a guy who I think can probably get some stuff done. Yeah. Can you look back at that and go, that's hope. All of a sudden I spend these two and a half hours, these people care. I I get the two. All of these things. Do you walk outta there going, wow, I, okay, okay. I'm an optimist. You already covered that. Now I feel like, oh, oh my goodness. Someone's in there with me there. There's, would, did that overcome you or were you still like, oh, we're interviewing people? No, no. It, it abso the, the first, the former, uh, for sure. My, my father-in-law, mark, um. And I walked out after this, after this meeting that we thought would take, I don't, I think we were scheduled for like an hour and they gave us two and a half hours. Wow. And they showed us a whole lab and they, I mean, it was amazing. And we walked out and it was one of those, again, I'll go back to my sales days, right. You, you leave a customer on site and you're like, we're, we're getting that po but you gotta wait until you get to your car to be like, yeah, we got it. Like we're going, this is awesome. It was kind of similar. We both walked out. We were kind of, you know, you got a verbal. We, yeah, we were a little, you know, cautious. We don't want to see us like fist bumping and being like, what did we just find? Yeah. But, but as soon as we got to the car, we were like, when was this meeting? so Helen was diagnosed March 10th, 2025. Yeah. And this meeting would've been end of, end of. March, I would say May, maybe beginning of April. Wow. So it's safe to say you guys just don't sit around. We don't sit around. Um, my God, Jesus. We don't sit, we don't sit around and especially when the, when the stakes are of this, this magnitude. So I have to, I, I have to fast forward to this event, so I encourage everybody to go to the Hope number four helen.org because when you look at the items that you have for your auction mm-hmm. I hope that there's a lot of people there because this is the most robust auction package I, I think I've ever seen. And clearly, you know, somebody in the golfing world that's been able to get golf course, uh, uh, opportunities at golf courses that guys like us can't generally get onto unless we write a big check for it. But how did you go about securing that many high-end?, I guess I'll, I'll go back to what I said before in a very, very, very unlucky situation where I, where I, you know, no longer consider myself to be a, a lucky individual. Um, WWW we are fortunate, uh, to have, you know, a network that Yeah, that has some, has some work pool, if you will. That got to work. That's the, that's the big thing. People that, that love. He Helen, um. And we'll do anything to, to try and help her out. So, uh, you, you touched on it before, just the, kind of, the success of the magnitude of, of, of the foundation. Um, you know, we launched this at the beginning of beginning of April. We've raised, um, over$2 million. I mean, that's since the beginning of April. Wow. Yeah, it's, uh, it's pretty incredible. There's a, there's a lot of generous, generous individuals there that, so they is coming dearly, coming from almost, from exclusively from individuals. Mm-hmm. So you haven't even started approaching foundations or any of that stuff? Mm-hmm. M that's a nice network. No, that's a very nice network. Um. That's, it's, it's incredible. Remarkable. It's absolutely incredible. Can I ask a couple questions about your event? Sure, sure. Um, how many people are you hoping to have at this event, and where is it at, I think, um, and when? October 25th. Got it. Yep. Um, October 25th. It's at Hazelton National. Yep. In Chaska. Uh, the capacity is 250. Okay. Um, uh, you know, we're, we're shooting, you know, I think you gotta have, obviously I want 250 folks there. Uh, you gotta have the right folks there, right? You gotta have the first, you gotta have the right folks. Uh, by the time we got around to planning everything, you know, the, the, the weekends were, we're filling up, were scarce. Yeah. Yeah, exactly. And, um. So I think we're gonna, you know, we're gonna try and move it into September next year. Get around, you know, get away from MEA and some of the other Yeah. Things that are going on this, this time of year. Be better golf weather as well. Um, but we're gonna, we're gonna, I mean, we're, we've organized and, and I will give my wife Stephanie, a huge, huge kudos on this. She's a gogetter on this one. She, well, she, first, she's a go-getter, which I, I love that about her. Um. She is in technology sales, probably should be in party planning. Um, she is, it's a whole different industry. Yeah, yeah. Yeah. She goes big a lot to it. And, and this is going to be, I mean, it's gonna be beautiful and it's gonna be, uh, a top-notch event. So I, I think, um, you know, it's important to, to realize this is the first year, and maybe we'll come up a little bit short on the, on the two 50. I think we can get to 1 75. Um. Maybe 200, probably close to 1 7 5, which it'll feel good. Which is still pretty Oh yeah. Yeah. Significant. You have to step back and just say, okay, well that's, I mean, sure we well and 1 2 50, but that's success. Yes. One of the things that I would suggest that you do with an event. I mean, just the fact that you've, you've gotten this far, I mean, put aside the fact that you've already blown the doors off with your fundraising prior to the event. But, you know, with an event like this, you know, I would look at it not just as a thank you for the gift of your investment, but with that group of people. Ask'em for the gift of their influence, are there people in your circles that, you know, you are just learning about this here today, and this is sort of the start of something. Mm-hmm. When the bell goes off at the end of this event, the money that's been raised is not the end of this event. Mm-hmm. Frankly, it is just the beginning of this event and this series of things, and I, uh. I'll tell you, hats off to you. I think about all of these rare diseases that people are, diagnosed with. And your response is, I'm gonna curl up in a ball and just be sad. Right. And you guys, I mean, the fact that she was diagnosed in March and I mean, it's, this is six months later, right? I, I, I'm blown away. It's remarkable. Yeah, it is incredible. And it does. Are you interested in coming to work for Masonic Chairs? It also speaks to your network and your, and, and your family and, and the extended, I mean, because you, you, there are gotta be days where it's, you're really, it's hard to pick yourself up. Mm-hmm. But you have surrounded yourself with people who. Are also demonstrating that kindness to you and helping you and picking you up and, and you to one another. So that's awesome. Thank you. Well, I have a question. So, yeah, how is Helen now? How's Helen right now? Um, she's not great. She's, um, she's changed and she continues to change. Okay. Uh, you know, she's, she's four and a half years old, and if you, and if you saw her on the street, you, you know, she, she looks, you know, she looks like a four and a half year old. Mm-hmm. Right. Um, but when you get down to it, you know, she doesn't talk. She's lost her, um, her ability to, to, to speak almost, almost fully. Okay. Um, it's been, you know, month, two months since, since I've heard, um, since she said, I love you. She used to say that, um, just in the last three weeks, you know, she's, she's lost, you know, she no longer says, uh, mama or dad or George, Georgie as she calls him. Um. So she's changing. It's, you know, the disease is, is taking its grip. She, she continues to suffer seizures. Okay. Um, her walking is changing. I mean, her gait, you know, her gait is off. She, you know, she's kind of stiffening a little bit. You know, she holds her, her arm's different than she used to. Well, I mean, think about that. I mean, if your, if your cell cells are unable to get rid of the waste, good Lord. Yeah. Yeah. I don't, you know, one thing that I guess that breaks my, I don't have the ability to ask her, you know, what she's feeling. Oh boy. And so she's agitated a lot. She's, yeah. You know, she frustrated. She doesn't have an attention span. Um, it's hard to find things that like that, that she enjoys and that she wants to do. And it has to be something that Helen wants to do if she's gonna, you know, if you're gonna, if you're gonna be able to do it right. And so it's, it's really kind of, it controls our, it, it really controls our life. How, so, how our options are. Limited. I'll say, how's, how's Big Brother George doing? Mm-hmm. With it? Mm-hmm. How's he handling? Is he understanding what's going on? Is he, like, how are you guys dealing with that? George? Uh, George is kindergartner, first grader. He's in first grade, and George is an incredible, excuse me. Um, George is an incredibly special kid. Mm-hmm. He is, uh. Um, he's a gift. He, he is Helen's big brother, biggest fan. He's loved her since the day. Oh my God. She came home from the hospital. Um, and he will protect Helen from anything. Oh my God. Um, in a way that a 6-year-old shouldn't have to, you know, he, he worries about her falling, he worries about her. Um. You know, like he, he'll always be whole, you know, behind her help, trying to help her up the stairs. Oh God. Sometimes it almost causes more damage. God, what a guy he is. He's, he's incredible. Um, and that's awesome. And, um, those are the heroes that we love to talk about. Show Georgie's the hero. He's a special, special kid. Oh my gosh. He's great you're doing what you can doing, doing, uh, probably more than 100% of the people. Thank you. So kudos to you. So thank you. If, if anyone is interested in attending this gala, uh, it's taking place. As I've said several times. October 25th, I'm planning on buying a table. I've got a few people lined up. My wife and I were talking about it and it's like, you know, you want to get the right people there. The people that have the capacity. To write the big check. Mm-hmm. Um, and you're right, the weekend of the 25th of October is a tough one. There's so many things that you're competing with. Mm-hmm. So the people that we know that have the deepest pockets, we've already called them and they're like, oh, I've got this and I got that. And oh, that's the same night as this, Galen all this other stuff. We're gonna get some people. I promise you that, but, uh, thank you. I I will say there, there are things you can do from afar. You bet. So you, you, you, you asked about, and I never answered it. The auction, the auction go online. We, we, yeah. We've, we've put together an an absolutely amazing auction. So if you go to, if you go to hope for helen.org and then click on events, um, and then I think it's, uh, buy tickets. It'll take you to the, to the Give Smart page. And, uh, through that you can browse the auction items. And then if you want to place a bid on the auction items, which we, we hope you will, uh, you just have to, you know, register, create an account. You can buy, you can also buy tickets for the gala. That, and I gotta tell you, here's where I'm really impressed with you guys. The tickets, a single ticket for the gala is, uh,$750. That's exactly right. And what that tells me is we're not messing around with this. We are not messing around no and good by having a$750 price point. You are self-selecting the people that are gonna be in that room that night. It's, I, I don't know whose idea that was, but what that demonstrates to me is this is pretty damn important. Yep. I just, I'm just blown away by you guys. It's just so impressive. Yeah, that's great. And, and thanks for the time too. Absolutely. I mean, you, I mean, time obviously is precious as you've. Communicated. Thanks for coming in and, and just spending this time with us, this little podcast that we do. Well, thank you so much. Absolutely. Thank you guys very much for, for hosting me. Do, do you mind if I just give please a quick teaser on, uh, on some of the items? Yes. Yeah. Yeah. It's, it's, it's pretty incredible. It's really incredible what very generous people have. Have donated what we've been able to come up with. Um, so we have some VIP experiences that are true VIP experiences. One of'em is, is, uh, two tickets to the Super Bowl. Um, I mean, how, where do you get something like that? I can't, I can't, uh, you can't say, I can't divulge, I can't divulge, uh, two tickets to the Super Bowl with a, with a pass to the, uh, the NFL's, um, tailgate party transportation, uh, to and from your hotel. Um, we have, uh, the F1 Austin Grand Prix. Mm. It's actually next weekend, but these tickets are, are for the year 20 20 26 next year. Yep. Yep. Exactly. Uh, VIP experience paddock passes. Um, we have Indy 500 VIP experience, you know, full blown. Well, I noticed one of your sponsors was some racing something or other. Yeah, so that's one of, I, I'll divulge this because they're, because they are incredibly, incredibly, um, supportive. Supportive and, and, uh, vital to our, to our success. So, Helen's, Helen's. Godfather is, um, is a great man named Tim Meyer. And, um, Tim's dad is a co-owner of Meyer Shank Racing. Okay. So Tim works for the race team. He is their, their COO and, um, he's, uh, uh, we lived in, before we moved here about three years ago. We lived in Colorado and we were out. Tim lived in, and his family lived in Colorado as well. So we were together all the time. Uh, kids are great friends and, um, cool. You know, he's devastated by this and, and wants to help out in any way possible. And, um, so Indy, you know, Indy car and, uh, and Meyer Shank racing have just been absolutely phenomenal with, with coming up with, with items. A lot of golf experiences. Uh, vineyard out in, uh, Sonoma County is, um, with the owners. You can have dinner with them. They're gonna give you a private tour of the, of the vineyard. Um, whole multiple days. Isn't there a Taylor Swift item on the uh, yep. There's a Taylor Swift autographed, uh, autographed guitar. Whoa, goodness sakes. Yeah. One of the, uh, one of the crazy ones that I, I'm actually really excited to see what it, what it gets, and I would love to, to bid on it myself is a weekend with an NFL referee, and so all you have to pay for the whole time is, is your airfare, but you can choose any one of his games. And, and, and go to that game. So it doesn't have to be own's your perspective. Yeah. Any, any, you could say, Hey, I've always wanted it some Melo. Is it? Yeah. I never gotta find out about that. Wait, Dan, I have a question. Sure. Um, is that a, is that an acoustic or electric guitar of Taylor Swift's? Uh, um. It's a guitar. I don't know. Thank God. Can't, I don't know. Would you want a Taylor Swift guitar? Why not? Well, I might, I I might, I wanna look. Do you want an acoustic or electric? Electric? She plays acoustic. I, it's probably an acoustic guitar, but I think, is your daughter a Taylor t Is she a swifty? Um, she used to be. She's a little older now. She's too cool for it now, I guess. I don't know. But are you. Am I swifty? Yeah. Uh, yeah, sure. Yeah. 22. As much as I need to be. I'm sorry, go on. So this, this weekend with the referee, you get NFL Referee. Um. Y you're gonna go to the two tickets to the game, and then after the game you get to have dinner with him and dissect the game. Wow. Yeah. PR really cool. He could break down all the mistakes. Can break. Why didn't you make that holding call? Oh, he's gonna tell you why you were wrong as a fan and he was right. But let me ask you this. Is he one of those NFL referees that wears the real tight shirt with the great B Biceps? Of course. Oh yeah. He looks good. Huh? He looks good. That is a super interesting, how do you know this person? That's an interesting idea. I love that idea. That's the the most creative item. Yeah. On the list. I agree. Keep going. What else do you have? We're fortunate with our, with our network and people that know people. Yeah. I think I like don't wanna be in his network. Yeah. I mentioned that you are now. You are, you are now welcome. Uh, but I wanna be in your network too. So, uh, the, um, I mentioned the Indy 500. Uh, um, you'll be on the track, uh, police escort. On the bus to, uh, you're used to that, Steve. Yeah. Uh, no. Same VIP experience for the Daytona 500. For the Rolex 24, our race in Daytona. Um, and, and I'll, like, I'm, I'm. I'm throwing out a lot of these. There's a lot of local items. There's a lot of, uh, like I said, private golf courses across the country, but, but local to Minnesota where you can, you can have access to rounds, uh, gift cards to different, uh, you know, different shops, uh, different restaurants. I mean, there, there's a lot of local items, uh, to Minnesota as well. Yeah. So there was an interlock and Oh, good for you. There is, there is. So yeah, we've put, we've, uh, we've curated pre uh. Pretty impressive, pretty impressive auction year one. Well, that, but that, that all big places, that oxygen is, um, reflective of the, uh, ticket to get in, right? I mean, it's not like you're gonna have, uh, uh, seeding for four buca de peppo, right? As a, as as an item. Applebees? No. I told my wife, as you know, with, I just said like, step Steph. This is, this is year one, like. Let's just, I mean, it's gonna take a lot as you go. Future years. I, I imagine I've never organized one of these before or, or been married to somebody that's organizing a, a gallop before. And, and so like I I just said it's gonna be a little more plug and play in future, like, we just have to, we just have to get this off. Yeah. And she's like, no, no, you're wrong. This is gonna be special. Wow. Like, this is for Helen and I want it to look good, and I wanna be proud of it. And, and I'm going big and she's gone big. And, um, that's, that's the way to do it. So, uh, that it's gonna be that bigger go home. That's what that is. Yeah. That's what she, that's what she is. And, and I didn't mention this before. We're talking about all this, you know, the, the money we've raised and, and all these, every single penny for this goes into research. Yeah. Uh, we have a million dollars out the door right now. Uh, with three different research institutions. Um, and I'm, I'm really looking forward to Brandon. Is Brandon gonna be at the event? Brandon will be at the event Super. Brandon and, and, and some of the other Joey Skeet. Okay. Uh, this is how much they care. Joey Skeet. Um, he's on Brandon's team and, and he came to Helen's fourth birthday. Mm. He brought his daughter goodness. And, um, so that first important for him to, to, to come and, um, that that first batch of cash is going to light fires and get things going. Yeah. And I'm looking forward to that call from Brandon saying, Hey, um, you owe us a big check in January because that means that that phase one was, was successful. Wow. So I'm very, very hopeful for that call. Um, so Great. Yeah. Yeah, we're gonna get, uh, I, I hope it's in time for Helen. I, I pray every night for that. Um, but you know, it's for the, it's for the broader community as well. We're gonna, we're gonna get this figured out and she will, uh, make it into my prayers. I promise you that. Thank you very much for that. Pretty amazing. And, uh, thanks for sharing with us. Yeah, yeah. Thank guys for this platform. Appreciate it. Appreciate you coming in, and I hope to see some of you people there. I mean, obviously at that price point. You're not gonna be a negative, uh, revenue podcast host. Um, that's probably not gonna make ends meet for you. But, um, hopeful we can help by spreading the word with our audience. Absolutely. And, and one jump on that website. And, and I'll tell you one way, I, I was on there today looking at the auction items and there are a whole bunch of items that don't even have a single bid on yet. I mean, the big bidding will happen the night of the event. Get on there and snap something up and help out Helen. Yeah, let's do it. You know there's things for stuff like us. There's longer Burger baskets. I mean, you're a big longer Burger Basket guy. Any donut D Kowalski's. Kowalski's has got a good donut selection. Donuts there. Yeah, deal like that. Kowalski gift cards. KG it's popcorn. That's right up Kgs Alley. I'm sure you could purchase popcorn with your Kowalski's gift cards. And you know when there's something on there that's a hundred dollars gift card. Don't be the guy. That thinks you're gonna get the a hundred dollars gift card for 50 bucks, you pay 150 for the a hundred dollars. That's how that is supposed to work. You cheap sobs. Come on. Why are you looking at us like that? I'm not looking at you. I'm looking just, turning angry. Anyways, on that note, thank you very much for coming in. Thank you, Dan. This has been great. And uh, with that, off we go. Hope for Helen. I.