Fighting for Leo | Denis and Anne St. Martin, Pompe Warrior Foundation #046

Hello everyone. I'm Karissa Dunham from Shining Light on Minnesota. I am very fortunate and honored to have Anne and Denis St. Martin with me here today. Welcome. Thanks for having us. Yeah, we're excited to be here. Yes. Well, let's get started a little bit and tell people a little bit about your journey with Pompe disease and how it got started and what all happened. Yes. Well, do you want me to start? So we um so Pompe we started uh Pompe Warrior Foundation after our second son Leo was uh diagnosed with Pompe disease which is a rare genetic disease. Um it is a glycogen storage disease where he lacks the enzyme in his body that breaks down glycogen. So it stores in your heart and your lungs muscles. Glycogen is sugar. Yep. Um, well, and they used to uh they they newborn screen tests for it now. So, since Leo's been born, they've caught about 10 other kids from Minnesota in the state with the disease, and they start getting treated right away. So, we're lucky it's one of those rare diseases that does have a treatment, not a cure. Y, but when Leo was born, there was no, they weren't uh newborn screening for it, right? So, we brought him home, thought we had a happy, healthy baby, and then at about four months, Yep. he started somewhere around there. Failure to thrive, decline, all that fun stuff. So, we ended up in the hospital. Um, his heart was 2/ird the size of his chest cavity. It was crushing the top part of his lung, so we had to put a TRA in. Um, we 24-hour nursing. We were in the hospital for 3 months. I mean, G ttube to feed um and then we did get the Pompe diagnosis, luckily that way the hard way. But we were told that he would always have the TRA to breathe. He would never sit up. He would probably never speak because a lot of kids with traits have a hard time speaking. Um he would never eat on his own, breathe on his own. Basically, his life was gonna be bad, bad, dead. That was his life trajectory. Luckily, with the ERT that those kids, he would live longer, but his outcome and his life, I don't know, his quality of life would not be the best, right? You know, so as parents, you're sitting there being like, "Okay, there's a treatment. It's not a cure." And so to me as a mom, I keep kept thinking they kept saying that to us and I was excited, but I kept being like, "Okay, well, what can I do to help this treatment?" You know, how much can I learn too, right? And we're also sitting there as parents being like, "Well, if you're telling me my kid can't like Well, that's the Yeah, that's the thing. I mean, they So, when they sat down, I hate to interrupt you, but when they gave us the diagnosis, they explained what it was and um it's just a buildup of sugar, right? And so we were sitting there and we were listening to this and they're first of all they they go on and they say all right well your life is life is going to be bad bad dead right um and sugar is the reason so we're we're sitting there and that after they left yeah I mean I don't think we should get a Mensah award for figuring that out but um so that's yeah so I'll interrupt but go ahead. Well, no, but we kept we finally looked at him and we're like, "So, we should like monitor his sugar and his diet." And they were like, "Well, there's no proven research that shows diet has any effect on Pompe disease and you just need to take him home and love him and you know, we're going to give him the medicine and it's going to extend his life and, you know, have the tra and we're like, well, could we maybe get him off the tra? Could we make him feel better? Could we, you know, work on other things?" Oh, no, no, no. This is just how it is. And I was like, what? And we got a lot of push back from the medical community. And I will say one thing about being in Minnesota, it is great. We are very blessed since we've been in the Pompe community. We are very blessed to be in Minnesota to have the Mayo Clinic. I mean they are I mean they are the number one medical facility in the world and also in the United States. We have the University of Minnesota. We have Gillette Children's. So we were lucky even though without newborn screen that we had access to good doctors who were at the forefront of Pompe disease even though it was a rare disease and even they were telling us like no it's just the medicine. So we kind of started and we started doing things on our own, right? Well, you want to you want to do research on your own and you want to try things like do your own clinical trials, right? You want to see what works, what doesn't because every every child's different. Yeah. And I think we were a little upset as parents cuz we weren't asking we weren't saying like if we cut we take out his kidney we're going to cure Pompe disease. We were trying to like feed him better. We were trying, you know, help us give him supplements cuz, you know, I also think it's funny, we have another older son, Joe, and like they were all about like, make sure you give him a multivitamin and give him a DHA when he was little. RHA, DHA. Let's push those. Let's try it. But with Leo, they were like, well, he doesn't need a supplement or you could give him this if you want. And I'm thinking, the kid has a rare disease. Like, we should probably be giving him a lot of vitamins, right? Nobody really wanted to tell you what he should take or what to give him. I've always I always describe a a rare disease as you have a house fire going on inside of you. Um you need more than a garden hose. Absolutely. You need to bring the trucks in. You got to bring it. So any angle you can take to combat that disease you have to take. Yep. And then I think at that point we were finally able to get discharged and we were, you know, doing the ERT and we were just doing the standard of care and we brought him home and we like Denis said, we had 24-hour nurses and um we had a hospital room set up in our office. Oh, yeah. Why wouldn't you? Yeah, absolutely. And I think at that point it really was Denis and him thinking about other things. And also I will say great to be in Minnesota because you know shout out Denis is a union employee. Um and we were so blessed to have insurance union insurance and be with um in a state that employs union electricians and quality people. Um so we were able to get you know we weren't destitute in dealing with that. we were able to come home and hopefully take care of our son for all the things that we need you know for a podcast that's pro Minnesota that's also like you know absolutely blessed for that um but so at that point Denis was thinking and I think talking to other people and it was kind of his idea I remember him saying one time like well it's almost like the reverse Leo is he's not LeBron James but he's the opposite of LeBron James like he's the worst why let's go get the specialist LeBron James gets the specialist to make top of his game. Let's go get those same specialists to fix the worst guy and make him try to be the top of his game. If they can't have it, why can't he, you know? So, he kind of was like thinking about like diets and like we wanted I think we wanted to do formulas, but we're also like we don't do organic formulas. We don't know the first blend. I mean, honestly, we weren't like the epitome of health at home. Like, we're going to like eat kale and like make our own formulas. Um and we did we had all these thoughts and we weren't sure how to start it. Unfortunately, we we we had a friend who's a health consultant who uh put us on the path the right path for all of these things. And he was really key in like kind of helping us. He would give us studies that he knew about and he would find the doctors and he'd be like, "You need to go find this doctor in your community and see if he'll help you." And so he turned us on to a wonderful a neurologist at the Mayo Clinic, Dr. Mark Patterson. Um actually, no, Dr. Mark, I'm from Rochester. So, yes. Yeah. Chief neurologist. Yeah, he's a big deal. Chief of pediatric neurology, Dr. Mark Patterson. Oh, love him. So, so he was the first one that actually helped us if you know him. Yeah. I mean, biggest heart in the world. And so, we petitioned to like see him cuz he doesn't really see Pompe patients. He doesn't see a lot of patients period. And um he can't he doesn't write the medicine that Leo was getting. So, he was like we did but we went on a neurologist. Here's the other funny side note about Pompe disease. Um, when Leo was diagnosed 9 years ago, it really wasn't thought of as a neuromuscular disease. They didn't think it affected the brain. But now here we are 9 years later and it has now been classified as a neuromuscular disease. Dr. Patterson knew that when we met with him 9 years ago, he looked us in the face and said, "This is a neuromuscular disease. They just haven't classified. He hasn't been diagnosed with that yet." So, he also put us on to brain health. He he got us on to supplements and anyways, love Dr. Patterson, but he was the one who then got us access to Mayo dietitians who helped us figure out micros and macros and do formulas. Before that happened, we had to put a presentation together for Dr. Patterson. Nice. And we presented it and mainly an and our health consultant, I'll be honest, put the presentation together. But we went down and uh we presented it to Dr. Patterson and Dr. Spatterson at the end of was like, "Yeah, this makes this makes sense. Makes complete sense. Y let's go for it." Y um but he said and this is the catalyst to Pompe Warrior Foundation but this was his words um even if we prove what you laid out here which makes sense is like it's going to be really hard to get anyone to care right uh because you can't make money on it you know what we have and what we do and how we empower people you can go do by yourself you know there's not a huge conglomerate or you know I want to make a difference and I want to do it yeah for for the good of my son and for me yeah Yeah, there's no magic pill or there's no, you know, so we we drove home from Rochester saying, "All right, well, this is awesome. We have someone in our corner. Someone's behind us now." But we also have to now start a nonprofit and fund research and prove these people. Yep. Let's get more behind us now. I have one. Let's get Let's get more. Yeah. Yeah. Yeah. And I think really the main goal for us with the foundation is that we would like dietary intervention and supplementation to be added to the treatment protocol so that every kid who gets this diagnosis because now Pompe disease is on the newborn screening for in 43 states. Right. So it is it's growing rapidly. There are so many kids who are picked up with Pompe disease in all these states because there's a form there's a late form and an infantile form. Yep. late comes on at 13. Infantile is what Leo has. It's a more severe form. It comes on right at birth. Um, so it's there's a lot of patients out there. It's they went from one in40,000 uh when Leo was diagnosed to now one in 15. So that's a significant jump. Well, and I think with all the nutritionists and all the regulations that are starting to come out with the the foods in America that we eat and everything that's out there and the foods that let's say you go to Italy and France and everywhere else and the foods that are just so easy and readily available and everything that are there and in our foods, we've we've stripped a lot of the nutrition and food nutrition, right? You know, look at the wheat and the grains and everything like the gluten. I mean, in a sense, it's just we talked a little bit about travel before. So, like when you're in Italy, we've been over there, right? A noodle here is completely different from a noodle there. Yep. I mean, you see all the all the dietary restrictions. You go and eat bread there and it's actually bread. Like all the gluten-free people and the people that have the wheat, you go there and you can eat whatever you want. Yeah. And it's not an issue, right? That's a different podcast. We won't get We won't get on We won't get on all the food stuff, but Yes. Yep. Yeah, her niece was just in Rome and she loved it there, but she said that she was surprised to find that there was actually because she is gluten-free because she has but yeah, she she did great over she found that there was gluten-free options there even in Rome because they have developed some gluten issues there because of you know some of because they're Americanized. Yeah. I don't know. No, because of the products that have been brought over there because of the econ, you know, the Yeah. America. Yeah. So, how difficult was it? I mean, I know when my daughter was born, they told me that she was going to have Down syndrome. And the first words out of the doctor's mouth, she's going to have Down syndrome. Do you want to have an abortion? And, you know, as a parent, your firstborn child, it was just a soft sign. Multiple multiple, you know, we had so many different screenings, everything. She just kept waving and her fetus on her left hand wasn't showing. She just kept sitting on it and sucking on it. And they're like, they kept saying it, kept saying it. And it's it's difficult as a parent, right? You don't know. Absolutely not. There's no choice, no option for me. Yeah. It's my child. At the end of the day, I'm going to have her. Mhm. You I get the chills whenever someone says, you know, my child is special needs. My child has rare chromosome. My child has Down syndrome, autism, whatever it may be. Let the viewers know a little bit about how that was when you came home from the hospital knowing that something was wrong and how difficult that was. You know, crushing. Um, like I said, we we had 24-hour nursing. Um, to have someone in your house um 24 hours a day that's not family or friends or anything related to you in any capacity other than they're here to keep machines going and things like that is um just that alone is crazy. Um, and then try walking into Target with a baby and a TRA and a machine and beeps and buzzers and things going off and, uh, there's there's not an easy day. There's not an easy moment. I'll be honest with you. Um, it was crushing. It was it was very very And um, this is for uh, my friends and family who might be watching this and Anne's friends and family, our friends and family. Uh there was there many days that I felt like just crawling into a bottle to be honest with you. Um and there was we had so many loving people around us that were constantly checking in, constantly showing up and um just couldn't let everybody down, you know? I mean, so yeah, it's it's very hard. They get choke up just Yeah, I know. It's thinking about those days. Y Yeah. Yeah. And it it's I think it's hard because you well and you see what what their life cuz you know when you have you have a baby right you have projections of things and um those are taken away from you know and so what do what what does their life look like? It's a new normal and nobody knows what it's like behind closed doors. Everybody's closed doors is different. Right. Yes. Yes. And nobody knows what life is like until they're in your shoes. Yeah. Yep. So, it's it's interesting to have but to have people support know that there are people here to support you and to be here for you is it's amazing. Yeah. It's amazing. We've uh we've been able to sustain our our foundation on just neighborhood events, you know, local family, friends, and things like that. And we've moved the needle in uh the Pompe world with our friends and family, you know, and not we don't have big sponsors, you know. No, we don't have any of that. We got people giving us 20 bucks and, you know, showing up to pitch a a tent or a table or whatever. Um and and we've done a lot of really good things um with our people, right? You know, people in Minnesota. It's the communities, right? It's the people around you, the people that you know, and I mean, any way that we can help, just like we are today, I mean, sharing it on on the podcast, putting it in the newsletters, letting our viewers know we're here. We're ready to help. You know, go out in the newsletter. We want to help. We're here behind you. We're here to help and help raise that bar, let people know that we're here to help. The Pompe Warrior Foundation, we want people to know that there are people here. Yeah. Yeah. For sure. Well, and and that's what I meant to say when I was finished, like our main goal is like now that it's newborn screening, like if we can get medical research funded and we can approach Yeah. the we're our doctor, we're working with a doctor and he's almost done, but we can approach the American College of Genomics, they can add it to the treatment protocol. So then insurance carriers have to cover like dietitionian visits. They have to cover certain supplements for Pompe patients. So if you get that diagnosis and you're in Idaho and you want to take levocarnitine because it's been proven that Pompe patients have carnitine deficiencies and they should take levocarnitine, you can take it whether you know you're on Medicaid or not, you know. So like that to me is like the important thing cuz like you asked about what how it is with Leo like the hardest thing is and like I think the other reason like we we do this is like when you have a kid like like Leo is also like those who are watching this who know Leo like to know Leo is to love Leo. Like absolutely. I'm going to use a bad word right now. Like it's okay. Leo is an [ __ ] I but he is an amazing [ __ ] and people who know him know that about him. But he's great. He's great and I love him so much. I do like but and he's just a funny kid and he like like he lights up a room sometimes and he's so funny. But also like having a kid like that like like Denis said like you are you live in kind of like a weird state of grief but also love because like your grief is for them and wishing that you could take that from them and always like wanting so much to change their world and it's hard as a parent, you know, right? It's hard on siblings too. Yeah. It's hard on everybody around. Yep. and but then also loving them so much and watching their weird little personality and like all the you know things that make him him like his braces and his AFOS and taking him to PT and him saying doing things that you only do with a handicap kid. So it's like you know it's an odd little world. So I think we also do his buddies jump on a back of his power like his friends ride the back there. I mean like and it's like the coolest thing for them ever. Like they don't know it any other way, right? I have to say things like, "Please don't run your friend over. I don't want to have to call his mom and be like, "Your friend broke his arm right now in a wheelchair behind that doesn't sound like a phone call." But yeah, but that's our life. Um, but I think we also do this cuz like we want to give back, you know, like it's our way of trying to like, you know, we don't want to grieve, too. It's so Anne and myself, we're we're bulldogs, you know? Um, and most people are not us, right? you know, so when we those doctors were sitting across from us telling us, you know, we're this train is coming and running us over. Nope, we're here. We're not leaving. Sorry. No, we're not. And um and we think we have a a way to help this. And but most people, like I said, are not us. And I'm I'm an electrician. That's where we met industry, you know, and when you when your lights don't work and you call the electrical company out there and they're sp they're the experts. They're supposed to have the answers. They're going to be like, "Well, this is X, Y, and Z." Right? And so when that train comes and runs you over in the in the in the medical office, you're looking at the experts and you're saying and the experts are telling you I want to know why. Yes. But the but they're telling you that you're you're the cause of the the the disease is this is sugar, but taking sugar away doesn't matter. It's not going to help you. And you that's the expert. So most parents are just sit there because that's a lot of our battles is is fighting the expert. Um and what we want to do is we create this research and prove it and then give parents the power to say no I can I can control some of this myself too you know and adults too because do you feel or find that with things like Pompe disease andor like obviously this is a bigger step but like cancer there's clinical research that is out there and that has been out there that has been done. So, we looked at Leo from a couple different points of view when we first started this and brought one of them up was the high-end athletes. So, we looked at high-end athletes. We looked at what they were doing in geriatrics and uh longevity and what they're doing in cancer, right? Those three things. Yep. Uh nutrition for sure is a huge part of all three of those. When you um when you take a Advil, Yep. alls you're doing is you're going into your body and you're flipping switches. You're turning on pathways, you're turning off pathways. Nutrition does the exact same thing. So, we studied the pathways, but it doesn't say having trial and error to see what works for for him versus, you know, the next one that has Pompe. Yeah. Yep. And it does vary a little bit, you know, not one sizefits-all. Uh, but yeah, cancer when you dive into PubMed. Yep. If you dive into PubMed and nutrition and cancer and so there's a ton of research out there. Ton of it. Yeah. I mean, like at first, like I understood it and I was like, "Okay." And I I saw Leo start to change and have like a little more energy at first. And you know, at first it was hard like he got kind of sluggish and I knew we had to hit him hard cuz we we're had to do a We're changing the diet, change everything. Yeah. It's it's going to be a lot. It's going to be tiring. But then he started to get energy and stuff. And then we had to um and it was a lot of And I mean it was like we were having to take his blood sugar and really like test him. He was like a little guinea pig and like we were taking labs and you know like changing everything to and once he got dialed in he started to lose weight and he got all this energy. Um and then once I really started Yeah. once I really started to believe is there was a lot of research being done on muscular muscular distrophe I'm sorry and they were using uh supplement I don't know if you viewers watch there's a Dr. Rhonda Patrick, she does another podcast out there. Um, and she does a lot with sul activated broccoli sprouts and sulfurophane. Um, and they were using that to get um, help a lot of these guys with muscular drophe take fast twitch muscles which is this whole area clear it out and also just help with the autoage process and a lot of other stuff. Um, so we started giving Leo broccoli sprouts. Um, within like a few months of that, six, seven months. Yeah, we had the TRA taken out. Nice. He was eating orally. It was amazing. It was so that once I saw that I was like, "Okay, I got there's something which like it's one of those things like you want to try for yourself too like right obviously like you know your diet and your nutrition changes when you do things. You cut down on caffeine. You don't you eat better. You eat more fruits. You eat more vegetables. You know for a while it's an adjustment for you. So imagine what that does for him. You take more sodium. You watch your sodium. We watch, you know, everything. It's funny you said that cuz you do need more sodium. You do need sodium, but you can't have too much. I mean, my daughter has epilepsy, so she has to watch her sodium cuz that's a trigger, right? So, it's she's going to not be happy that I'm sharing all this information, but it's one of those that like it is a trigger point, right? So, you have to watch that. You have to watch levels. You have to watch everything with seizures and everything else. So, yes. Yeah. So, you're familiar because we we looked a lot at seizures, too. That's always Denis is saying he's helped people start the diet and that's like always his warning. He's like, "Watch your electrolytes." Because he's had people think they're having like heart attacks when he like But you can't have too much water. Like your water flushes out the electrolytes, so you have to have liquid IV, but you can't have too much salt and it's it's a very fine line. Yeah. Yeah. The body is always looking for homeostasis. It's always looking for that balance. Y but and the thing we also love about the foundation now is that as more patients get diagnosed, there's more parents that think like us. Like we're not alone in this. There's so many people that find us and they're like I went to my doctor and said the same thing you guys did like hey my kid has Pompe disease so I should watch his diet, right? and they're like, "Oh, no, no, it has nothing to do with then these parent like that said, we're giving them ammo to push back or people that are going to come in the future and be like, "Hey, what was that podcast? My son or daughter might have Pompe disease or they do now or you know, looking at it in the future. You never know what's going to come." No, you don't. And thank you for giving us the opportunity to talk. Absolutely. You know, you never know what's going to come or knowing that nutrition might help or might not help or just know it's in conjunction with We're not antiaxers, right? Absolutely. Right. And that was the other hard thing I think when we started is we are definitely not anti the drug cuz like the drug companies we do need them. The drug is great and I think we weren't saying like just eat healthy and you'll cure Pompe disease. No, but we were saying like you should options you know both you've got to try what's best for your children. Yeah. And see what's out there, right? And you know that knowing that now and knowing that about you. Yeah. Yep. 100%. But yeah, I would love to take a magic pill and well, wouldn't everybody just like like if someone wants to be skinny or someone wants to be have a neural link in their brain or whatever it may be, let's let's magically try something and live forever, you know? Yeah. Doesn't work that way. No. Um, but we do have some really exciting research coming out of Southern Florida. Um, Dr. Domistino is our researcher down there and they're actually calling our mice super mice. Okay. So you have a control group, right? You know, um that are would be considered normal. It's they call them wild type. And then we have a knockout mouse, which is the Pompe MA mice model. And um so we've done all our interventions with the with our mice versus the normal mice, and our mice are actually outperforming the normal mice. Yeah. So it's very very exciting. Well, it's fun to see changes. Yes. Yeah. Slow though. Slow train. Yep. Slow. But any progress is progress, right? So if you can see changes now, like who's to say what's going to happen in the future, even though it's like, okay, that's 6 months, that's a year, here's, you know, five years, whatever it may be. But yeah, I think it's also neat that we took a guy like Dr. Duggustinino. He's a big researcher in like Nassau, Department of Justice, like DoD, like he kind of does a lot with athletes and stuff like that. and we brought him in the the Pompe world and now he's kind of doing that. So giving that his knowledge to diet and supplements to a rare disease community that understood it not to the level he well it's it's a it's a newer disease right it's not something that's been out there well it probably has been out there but it's been undiagnosed or something that's newer in the communities cuz honestly I think those doctors that's the other thing I think a lot of those doctors thought we were like questioning how smart they were and we weren't like you are the smartest person in the room all we were saying is like could do this and a lot of them the reason they wrote they take a defensive position and the reason they wrote diet off is and we heard this so many times is it's not feasible it's too hard on the patient they won't stick to it it's too hard on the families and a lot of times dentist and I would be like you know what else is hard is burying your child yeah sometimes it's trial and error you have to go for a second or third opinion until you figure out exactly what it is doctors a lot of times when they are young and they are on their residency or whatever it is they don't know the answer and that's fine. And then you have to go to somebody else and try it again and try it again until you get somebody that fits and really wants to know and wants to know your son or your daughter and really wants to get answers for you. That's a challenge in and of itself just finding that team. Yeah. And sometimes that might not be the male clinic. That might not be Children's Hospital. You might have to go to Texas or wherever it may be. You've just got to do what you've got to do for your kids. Yep. Y that is the only thing I will say and you could obviously you are a rare disease mom in the Other thing I always tell my newly re diagnosed moms is I was like, you just have to be the advocate. Like that's the hardest thing about it is if you don't feel comfortable with the doctor, be okay. You got to find somebody, right? Cuz you're going to be with them for a while and there's going to be some tough discussions. You have to like them. We're at Children's. We're at Gillette. We're at um Don't mind all of them. Yeah. And we have uh specialties at each one of them. Well, and being that I'm from Rochester, everybody's like, "Oh, you're great. You're from the home of Mayo Clinic." I'm like, "Yeah, but it's not the greatest." Everybody always says it is. It is great. It's May Clinic. I love Mayo Clinic. But you're right. That's an umbrella statement. It's not. You can't be afraid to if you don't get somebody you're not comfortable with. You can't be afraid to ask to get a second opinion whether it is at Mayo or somebody somewhere else. You know, it's totally agree with that. And you can't take the doctor's feelings into consideration when you do that, right? You know, because they will, you know, they're people. They have personal feelings and they can get hurt when that happens. Right. Um, you have to put your son or daughter or yourself ahead of that and trust yourself as a parent and your judgment, too. Yeah, you do. Yeah. Yeah. Yeah. We're going down a whole rabbit hole, but we're good. It's all right, though. We're good. Yeah. It's It's been a a crazy fun, sad, all of the emotions journey that we've been on. Um, but it went from bad, bad, dead to good, good. Yeah. And it's growth and it's excitement and it's good to see that you're you're getting somewhere and you're learning from it and yeah, you're getting to know a whole new world really. Like you're learning yourself more than anything and you're getting to know each other on a whole new level and yeah, we're business partners. I mean, if you're with a lovehate relationship that, you know, something any relationship is a partnership, right? Oh boy. to deal with both of them is uh that's a unique scenario too because you have to separate the personal relationship sometimes and make business decisions. Yep. And the nonprofit world and then you get the the parent mode and you get the doctor mode and all of all of it, right? Yeah. Yeah. It's super fun. Yep. So, what's next when it comes to the Pompe Foundation and what do you guys hope to find and do? Well, so we are I know Yeah. your main goal. So, we're in the process. So luckily we we are getting a case study currently written on Leo. So good main goal is we will have a animal study through Dr. Dagustinino at the University of Southern Florida wrapping up here shortly and then we will have the case study authored by Dr. Mark Patterson. He is no longer at the Mayo Clinic but he is so I believe he's kind of with um Princeton and the and a private practice. Um, so he it hopefully then we can go to the American College of Genomics or possibly an IRB board with a human study and a animal study, both showing efficacy, right? And we'd love to do our own clinical trial. That's kind of why we're sitting on our money. We'd love to take four or five patients and do our own diet, track them, which we're close to at the moment. We've got the players put in place. Um it's just uh there's a lot of logistics, there's a lot of legal ease, right, when it comes to that part. Oh, absolutely. But I feel like that would part of me is like why not, you know, like it's worth it. It it is absolutely. And I feel like sometimes it's, you know, it's the whole hedging your bets like all the all the clinical trials take the healthiest of the sick people. I know that sounds awful to say, you know, and then they make it look good. I want to take we want to do the opposite to be honest with you. We want to take some take a range of variation, you know, take somebody who doesn't feel good at all and give them some hope and make them feel give somebody some hope. Give, you know, just do what you need to do, you know. And maybe that's cuz it's always me, you know, cuz like Leo Leo is in a wheelchair, so it's like he's never open any clinical trials. I mean, they always want people who are ambulatory and, you know, blah blah this and that. And do you reach this checklist? Are you here? Are you here? Are you here? Okay. You don't you don't apply. Sorry. I know. Yep. Yep. So, but that the next part I mean so with those two studies that we have um it really gives us ammunition to go to you know like you said a cause genomics and uh start to rewrite the protocol for Pompe because that hasn't been touched in 15 years or something you know way before way before even any of the nutrition stuff or any of it came. Yeah. before newborn screening was even on the and I think that's important now if I like I said because all the states it's in like I mean I felt even last month this mom I keep saying Idaho because this mom from Idaho actually like reached out to me and her and I were just emailing about some kind of supplements and it turned out from me and her and I talking that like she was actually on like a lower dose than most kids are for her disease diagnosis and I was like it had been for like two years and it was just cuz her do that kind of the standard that's on the label. You start low and you work your way up down the road. So most in kids who have who have infantile Pompe disease get a high dose once a week and her son but the label technically is really only made for late onset. So all the drug companies just make it for late and they kind of double up. You know it's generic and they double up for the bad kids. But if you're not in a you know if you're not in area Yeah. And the doctor just reads the label. He just doesn't here's the generic. Just take it and do what it does. And so her child had been getting the generic low dose for 2 years. And she was like, he's not doing well and I think diet would help him. And I was like, you should not be on that. And I sent her all the paperwork that had been out there for like probably at least four or five years. And after Google would even tell you differently. She wrote me. Yeah. And she wrote me like two weeks later. She's like, "Thank you so much." to my insurance hurry up and got him on his the double dose like the two weeks later and I was like I felt so bad for and I was like see this is why pro like cuz usually protocol protocols when you type in you have a patient you get a protocol list right away just as something and I was like and that's that's the ultimate goal is for us to update that protocol from you know and at least have like here's general nutrition on how what they should be eating how they should be trying or like yes yeah try it should be part of worst case scenario yep here's get them on some iron get them on some like it's not the worst thing try you know try feeding them this you know and that's the other thing I learned from talking to someone like Dr. Dagustinino who is a expert in the diet like understanding a disease and it's a scale he's like you know certain people can metabolize and break down the sugar quicker and faster. So like if you have this specific mutation, you may be able to have a pizza once a week, you know, or you might not be able to. You know, yeah, it just depends. Or you can't, you know, it's personal medicine. Do a genetic test and find out how your body metabolizes things. That's as simple as that, right? I will say that you very much so can. Yep. Another thing with the protocol is is I'd love to be able to put um constant glucose monitors on is one of those like I think that would be great for that. You need to know your blood sugar levels. I I put one on every once in a while. It's so you It's so interesting to see the correlation how how I feel compared to where my sugars are at different things and and the correlation even like my sleep, you know, and like, oh, it's wild. I'm afraid. Yeah. Right. Well, I mean, I listen a lot to like Gary Brea and a lot of his, you know, his his genetic testing, everything he does like that. And it's just one of those you have to know your levels. You have to know where you're at. It's just it's it's part of life if you but there's a certain subset of our population that doesn't, right? You know, but the if you are someone like the three of us, it sounds like um it's available for you, right? You know, so if you're a go-getter and you're feeling different and something, you know, is not right, um figure it out. There's resources and there's there's tools to get to the bottom of it. Yep. Absolutely. So, how can people find out get on or be a part of or help support Pompe Warrior Foundation? You're the boss. Yes. Please share. You're the boss. Well, so our website is www.pompwarriorfoundation.com. Yep. We are Instagram at pompewarriorfoundation.com. Um, same thing at found uh at Facebook. We are hoping to have another family-friendly event in September. Usually right after the kids come back from school, like the weekend after Labor Day. We're usually stationed out in West St. Paul, Minnesota. Usually do like a carnival thing. Fun. Maybe a dunk tank this year. We keep trying to get someone fun in the dunk tank. So that'd be fun. Anybody fun out there who wants to get in the dunk tank, give me a call. There you go. And it's going to go on our newsletter, so we're going to share all the links, too. Yes. Thank you. Thank you. Um and then we did try a comedy night. I'd like to do it again around the holiday. actually pretty fun. That was on Seventh Street in St. Paul. We had some good comics out there. That's a That's not family friendly. That's parents family. Yeah. Nope. Nope. Nope. No kids. Sorry. But uh yeah, so I mean our website obviously Instagram and Facebook, you know, all the all the usual suspects, all the good stuff. Yep. And Union Electric. Oh yeah. Oh yeah. About your work. Uh so Madina Electric. I am uh business development. I'm charge of pre-construction and uh manufacturing for them. Um so yeah, it's I really like Madina. I spent a lot lot of time uh 20 some years in the industry. I've been in a couple different places and I think I found a really good home at Madina Electric. Yeah, very very lucky. And if you see Leo out there, tell him hi. Thank you so much for being on our podcast today and we wish you guys the best of luck and thank you for having I'm sure we'll see you around. Yes. Yeah. [Music]