Kyle Kingsbury Podcast - #134 Brad Swail

Episode Date: December 16, 2019

This week I'm joined by my good friend Brad Swail. Brad is the host of the peoples rx wellness podcast. In this episode we discuss wellness, his son's disabilities , tech- science, and alternative medicines that could potentially heal other children out there. This might be a gut wrenching episode for some but please listen with your heart.      Connect with Brad| Donate to Project 8p | https://project8p.org/ Podcast - http://peoplesrx.com/health-wellness/podcast/   Show Notes Hold On To Your Kids by Gabor Mate | https://amzn.to/36c4hXP Weediquette Stoned Kids | https://www.youtube.com/watch?v=TzqDZA6EVDI   Check Out|   Kyle's Inner Circle Course (Private 1 on 1 Coaching) https://www.kingsbu.com/inner-circle   Natasha Kingsbury's E book (30 recipes)   Purchase for $5 at https://www.kingsbu.com   Show Sponsors|   OneFarm Formally (Waayb CBD) www.onefarm.com (Get 15% off using code word Kyle at checkout)   Indochino Visit www.indochino.com Use codeword Kyle at checkout for 30%off your total purchase of $399 or more plus free shipping   Caldera Lab https://calderalab.com/kyle Use codeword Kyle at checkout for 20% off your first purchase of (The Lab)   Onnit  Get 10% off all foods and supplements at Onnit by going to https://www.onnit.com/kyle/   Connect with Kyle Kingsbury on: Website | https://www.kingsbu.com/ ( Supplement List & Newsletter) Twitter | https://bit.ly/2DrhtKn Instagram | https://bit.ly/2DxeDrk Get 10% off at Onnit by going to https://www.onnit.com/podcast/   Subscribe to Kyle Kingsbury Podcast iTunes | https://apple.co/2P0GEJu Stitcher | https://bit.ly/2DzUSyp Spotify | https://spoti.fi/2ybfVTY

All right, friends. Today's episode is with Brad Swale. And this is unlike any other episode that I've done. To put it plainly, it was gut-wrenching. Both of us cried. It is a very, very touching story that Brad is bringing to the table here. And an important one, an important one that needs to be shared with the world. And it's definitely different than any other podcast that I've done before. I absolutely love Brad and his family for what they're doing. I'm not going to give away too much of the show. Just check it out. Please let me know what you think. He has a nonprofit that he's working with. We'll link to that in the show notes for you. Anything that we mentioned here, we'll link to in the show notes, Facebook group, things of that nature. Let me know what you think about this one. And if you know scientists personally, and you know people who could be of service and help in a very unique situation like this, please don't hesitate to reach out. Don't hesitate to connect us and give it a good listen. Let me know what you think.

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It's an incredible deal for made-to-measure clothing. You really have no excuse anymore to wear clothing that doesn't fit. Today's show is also sponsored by Caldera The Lab. The Lab is a product that Caldera has created, which is a multifunctional men's face serum. Now, I'm 37 years old, taking quite a beating over the years in fights and in football, and this is a product that I absolutely love. To be quite honest, when I was introduced to this product, it wasn't something that I was like, yeah, I need a good facial serum. It's not something that I've used in the past,

but using it now, I completely understand the benefits. My skin feels younger. I feel energized when I put it on. It smells fucking incredible. And I think that's part of the reason I feel energized when I put it on. I rub it all over my big bald head when I do the big head and shave it all the way down. And even now that I have this massive beard, I just rub it through my beard. It feels great. It adds the look that I want. And it's something that's become a daily ritual in my morning routine. You can receive 20% off your first Caldera Lab purchase of the good by going to calderalab.com slash Kyle. That's calderalab.com slash Kyle for 20% off your first order of the good. And as always, we're brought to you by Onnit. And today I want to talk to you about our mineral electrolyte drink that I helped create. It uses sodium bicarbonate and a number of

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you guys for tuning in to today's show with my dude, Brad Swale. Again, please check out the show notes, donate if you can, and let us know what you think. Thanks for tuning in. All right, we got Brad Swale in the house. Thanks for having me. Did I say the last name? Yeah, you said it right. Swale. All right. Perfect. There we go. Easy enough. There's quite a bit we want to cover here today. I got to meet you through a mutual friend. Yep. And we had a little breakfast to get to know one another. You were barefoot. Yeah. Well, that's a hippie restaurant. If you ever come to Austin for Paleo FX or any of these cool events that they have here, South by, ACL, make your way to Pacha. No affiliation with these guys, but they do hands how long it's been around. I've never even heard of it. But the first time meeting you, I mean, I knew you were sort of into a different lifestyle than what you typically meet or whatever.

And when you were barefoot, I was like, this guy, he's got it going on. He knows what's up. Yeah, the hippie restaurants don't mind if I come in barefoot, or at least they don't act like they notice. It might just be like a size thing where they see me and they're like, eh, we usually don't let people in barefoot, but he gets a pass. I'm not sure. I have to be mindful of that. Sure.

I always forget what kind of meat wagon I have on. But let's talk. You come from Austin, born and raised, correct? Born and raised. I mean, everyone's – people are sometimes amazed by that, and I don't know why. But I guess it's – with all of California and Houston and everyone else coming here, yeah, I'm a rare breed, I guess. You are a rare breed.

Talk a bit about what life was like growing up with your family and the family company and all that was involved with that. Yeah, so my dad started People's Pharmacy. I guess since this is online, I'm supposed to say People's Rx because there's a People's Pharmacy newsletter that's based in Florida, I think. And so we're People's Rx, Austin's favorite pharmacy. So yeah, I mean, it's a holistic pharmacy

that you can still get your regular prescriptions there and over-the-counter stuff, Claritin, Oxycontins, whatever. Good and bad. Good and bad. Absolutely. Or how it's used. Yeah.

And so we also have, uh, my dad had this vision of changing people's health. Um, he realized early on that there was something going on with pharmaceuticals that, you know, they're not,

they're not the answer necessarily. You know, they'll, they'll help your symptoms. they'll help you in a pinch or stuff like that, but to really get healthy, you got to change your diet, change your lifestyle. And so he started this business and brought on a lot of nutraceuticals, professional lines of supplements and everything like that, organic delis, organic when available, to let food be that medicine. It's painted on the wall at the back of one of the delis. So, I mean, I grew up in that store.

It was like a second home to me, like my third place. Home, school, people's pharmacy. And, I mean, it was – i didn't know what i had growing up you know it was a it was a it's like you know your kid he doesn't understand what he has like how good he has it yet but i'm sure once he hits college and stuff like that he's gonna like really realize like shit this is, I really had it good. I had to, you know, I got to have conversations with alternative practitioners of all sorts.

And I mean, I didn't, to me, it was just normal. I would ask my dad to take me to the mall to maybe buy a video game or something like that. Well, let's stop by the pharmacy real quick. Take five minutes. Yeah, right. And hours later, I'm still sitting in the pharmacy. So all I have to do is to entertain myself.

I'm looking at bottles of supplements, leaflets, talking to practitioners, talking to pharmacists, screwing around in the lab sometimes. Back then, it was a little bit more Wild West. Hopefully, you weren't tinkering with medications. I could see my son doing some shit like that i was i mean the the hard stuff was up top you know i couldn't reach that but it was i would i would get to mess with the the tools and because it's a compounding pharmacy so they also got to you know

they make stuff there too um so yeah i mean it's uh it was a unique experience for sure and i i don't really like to use, I don't like, I think the word, the term privileged gets thrown around a lot nowadays with not a lot of care of like what it really means. But in this aspect, I really was privileged to,

you know, have access to that sort of information and those sort of conversations with people my entire life. Yeah. Yeah. I'm happy you brought that up too, because it's something that,

and I'll try to use language that doesn't point fingers or anything like that because I've been called out on it before. And of course, when you're pointing fingers, that creates more division. And that's certainly not my intention when I talk about things like that. But the idea that privilege is a bad thing is complete nonsense. Like to count your blessings is one of the easiest ways to embody gratitude. But just looking at the ways that we are blessed, the ways that we have been privileged, and to know that that's not only is it okay, but it is awesome to recognize that. You know, it is awesome to say, yeah, man, I had a lot of good things fortuitous events that led me to where I am at today you know and there's nothing

nothing wrong with that at all I think it's a very weird societal position to put yourself in to blame others for having good fortune yeah it's yeah and there's also another side of the coin you know growing up with an entrepreneurial father

who's you know trying to grow this, what turned into sort of an Austin mainstay. I mean, I love my father. It's not a complaint, but obviously there's a, maybe there was times when I wouldn't actually get to, get that FaceTime with my dad that I really wanted to. But there's a balance there.

Two sides to every coin, no doubt about it. I mean, even if you look at somebody who's as successful as Gary Vee, and he's talking about, and this is going off topic, I promise I'll circle back. But he was on Mark Bell's podcast, and he was talking about every parent is trying to win the game in the first three innings. You're a parent for your entire life.

And he's trying to leave a legacy behind for his kids. And he is, there's no doubt about it. My pushback against that argument is that perhaps the first three innings are more important than we think it is. It's not a baseball game, right? If a baseball game has seven innings plus whatever, or not seven, nine innings plus whatever, and you get the seventh inning stretch and all that jazz, you would look at each inning as equal for the most part until you're coming down the home stretch. But with children in particular, early on, it's pretty significant. So I wouldn't say that it's okay to put your kids on the back burner for your job or whatever legacy you think is more important than your kids. If you've chosen to have kids, it's important to put your kids on the back burner for your job or whatever legacy you think is more important than your kids.

If you've chosen to have kids, it's important to be involved in their lives. And it sounds like, looking from the outside in, that you did have some of that balance, at least, back and forth. Oh, yeah. I mean, my mom was... Ideally, parenting is a two-person game, or, you know, whatever, however it works. And so my mom didn't work for the most part. I mean, she helped with the pharmacies in the very beginning.

And, you know, then she took time off to help with kids and more. I mean, I have, I'm the youngest of four, so that's a busy job in and of itself. So I agree with you. You know, the first three innings, if we're sticking with that analogy, um, I would say are the most important, you know, getting that bonding with your child, letting them, you know, imprinting on them, uh, is super important.

There's a great book that I'll leave people with before we switch gears here. It's called Hold On To Your Kids. It's written by Dr. Garber Mate and another doctor, and it's read, if you listen to it on Audible, by Garber Mate's son, which is fucking awesome because he's reading what his dad wrote, and obviously he helped contribute to it. But it's really cool to see Garber's vulnerability and admitting where he kind of failed as a dad and how he learned otherwise.

Yeah, I'm familiar with his work. I think I have his book. I have not read it yet. I mean, I... Yeah. I want to get into all his literature and definitely have him on the show. But, you know, one of the reasons that we're here today is to discuss some new technologies and to discuss what's going on at home and some of the purpose behind the potentials

of these new technologies. Yeah, man. So, you know, talking about parenting, it was always really important to me that my kids have, you know, a close relationship with, I mean, even before having kids, I've always thought, I thought it would be the opposite before I had kids that I would assume that I would work as many jobs as I would have to and my wife, whoever that may end up being, would stay at home with the kids.

Ended up being the opposite. When our first child was born, my wife was at home, and she ended up just not really, it was just not really for her. She really wanted to go back to work. She's an attorney. And you spend all that time and money on education. She really wanted to use it. work she's an attorney and you spend all that time and money on education she you know she really wanted to use it she so i said that's fine but i'm going to stay home so i ended up being a stay-at-home dad for a few years um i think the best decision

i've ever made you know being able to bond with my kid that way um and then we had our second kid lachlan we call him chow chow yeah he's my my older son gave him that name before he's born and he has a super rare his super rare genetic disorder called uh ap partial deletion duplication syndrome. I apologize. I get a little bit. Don't say sorry, brother. He, so on his eighth chromosome, he has some genes that are deleted and some that are duplicated.

And within this 8P diagnosis, there's some kids that have just deletions, some have just duplications. And it's super rare. I think they estimate that there's maybe 1,000 people in the world that have it. In the United States, I mean, maybe 100. But there's, so when he was born, thankfully I was a stay-at-home dad, so I could spend a lot of time, you know, being with him and helping him and sort of figuring out how to manage this crazy diagnosis. He is... He's happy, you know, which I think is what everyone wants for their kids.

I sometimes wonder if he knows sort of what, if he understands at some level that he's different. And I don't know that he does. And I think that's sort of a blessing, you know, that I think if I was in his position, I don't know that I would want to know the life that I have going forward. So he, we get this crazy diagnosis where we had no idea going in,

you know, before he was born that this was happening. There was some indication that maybe something was wrong, but the doctor put it at like maybe a couple percentage points increase in likelihood that he would have spina bifida was sort of the guess. And we're like, well, that's fine. Whatever. No big deal. We went and did some level two ultrasounds

just to make sure that everything was okay. That doctor was supposedly one of the best ultrasound doctors in San Antonio. We were there at the time. And I mean, I'm blown away at the things that he missed. One of the common, I guess, associated diagnoses with this is A genesis of the corpus callosum. Corpus callosum is the center part of your brain that communicates the left and right hemisphere, sort of the superhighway.

So his just never formed. And typically that would show up in even just like a regular ultrasound. But somehow they missed that. And then there's, like they said, that his legs were measuring short compared to the rest of his body. But they're like, ah, it's no big deal. He'll grow out of it or whatever.

And so we're just, you know, happy-go-lucky, thinking, great, we're having another kid. And then he's born and immediately something is off, you know? And he spends a couple weeks in the couple weeks in the NICU the biggest issue there was getting him to eat he has a high risk of aspiration so he can't eat on it he he still does he he needs a lot of help eating um and so I mean I remember to get him out of the NICU we had to do a feeding study where he had to

eat so much, drink so much from a bottle within a 24 hour period and so I was just, they gave me my own room at the NICU and I mean I was doing everything I could every trick that the nurses that the nurses taught me to get him to feed.

And luckily, we got that and got him home. And it's been, he's gotten better, for sure, at that. But now he's sort of refusing the bottle a little bit more, which is normal. You know, we're glad that he's making that progression, but, uh, you know, now we're trying to get him to eat solids and that's a whole nother challenge when you're at risk of aspiration of aspirating anything. Um, you know, he actually has aspiration pneumonia right now because he was just, you know, things were going down the wrong pipe enough that now he has a little infection. And luckily it's mild, but we have to take a couple steps back now before we can take another step forward.

I mean, it's a real interesting experience. I'm glad it's me and not somebody else because of, you know, my experience growing up, realizing that there are potential alternatives to just, you know, the Western medical system, which, I mean, thank God it was there for him, but, you know, looking at and exploring other options, you know what I mean? Yeah. it was there for him, but looking at and exploring other options. You know what I mean? We're looking at CRISPR technology, gene editing. It just sort of makes sense to me that if he has deletions and duplications on his genome, then let's knock this out. Let's knock out

the duplications. Let's add some stuff in. Let's do whatever we need to do. And my goal originally was to have something done by age two, but the scientists weren't quite ready for that, you know? Yeah. So now it's age five. And if I need to adjust my expectations, I will. But, you know, we're fighting right now to get that by age five. Get a study going, if not for him, then somebody else.

You know what I mean? Yeah. I remember talking to you about that. It's certainly the position you're in is a position that no parent wants to find themselves in. I mean, there's absolutely zero doubt about that. And of course, with your background, there's nothing wrong with Western medicine per se, but when we give all of our authority over to it, and we just take every word the doctor

says as set in stone, this is the only way, that's where we run into trouble. But through your background, you've come to realize that there is alternative and functional medicine doctors, and there's a different way to go about things. Now, from a technological standpoint, with CRISPR and some other things being made available, there are options that hopefully can remedy, right? You know, the conversation we were having was a conversation that comes up for me around CRISPR is we don't know. We don't know what happens when we change something. If something happens downstream, affects things of that nature. And then of course, there's the larger conversation around what is happening in China.

Are they trying to create a super race? Definitely. And if that happens, then how long is it before the rest of humanity decides to join in? Yeah. If there's pressure because there's a billion people that are exceptionally smart or exceptionally gifted in athleticism or any of these things that we would consider criteria for being a great human, if that happens, if and when that happens, it's only a matter of time before everyone else joins in. It's no longer the argument of what is right or wrong, what is, you know, are we tinkering with, you know, are we playing God, I guess is the answer. In your circumstance,

all of those arguments go out the window. None of that shit matters. It's literally about saving a life. It's about creating what we call, what we come to understand as life for your son. Yeah. And I guess, let me say, CRISPR is sort of my idea of what would be an ideal therapy for him. And I think there's, you know, there's different kinds of CRISPR technologies that, like, they might use different, like, there's Cas9, there's Cas12, different numbers, different sizes of the protein or whatever that carries the RNA and changes everything. I mean, if it's not CRISPR and it's stem cells, like, hey, we're game. No big deal. But yeah, I mean, in China,

there was a big news story, I don't know, maybe six months ago or something like that, a year ago, where a guy altered the genome of some twins to be more resistant to HIV. And I don't think there was any, I don't think these girls were necessarily at high risk of HIV, but I think he was just trying to test out the technology and there was a big ethical issue with that. And I agree with that ethical issue because I don't think this guy knew what he was doing necessarily. And, you know, speaking to that downstream effect and there's, I've read that there's a

potential that maybe these girls would have a higher IQ because of this edit and the higher IQ was not the reason for doing it but I guess that's sort of a happy side effect and I don't see that as really being a problem I don't know that having more high IQ people in the world is going to hurt us. Having stronger

people in the world, I don't know that's going to hurt us. It might change the Olympics or change MMA or whatever. And we can address those issues as we go down. But I mean, my personal belief is that I would be happy if it was more available.

It's like cell phones cost thousands and thousands of dollars when they first came out. And then the price eventually started going down because people invested in it, people bought those phones. And eventually the price will come down and everyone will get it. I'm sure there will be some sort of evil person that makes some evil change, and it has a negative effect, but I think overall it would have a very positive effect for sure. But you're right. In my situation, or in my son's situation, all that does go out the window i mean it if it's if whatever therapy comes along that might help him uh the downstream effects you know without knowing exactly what it is i mean i'd be pretty much game for anything you know he's um so just you know give you a little bit of background on what he's like, looking at him, he would look like sort of a regular two-year-old. He's got some odd features.

If you looked at him long enough, you might think, oh, that's a little bit weird. But nothing that would cue you to think he has a genetic disorder. But then you might hold him and you think this two-year-old is real weak. He doesn't have the muscle tone. Obviously, he's not talking. He's not doing a lot of stuff that other two-year-olds would be doing. And so,

then you start to realize. So, he has slow reaction times. Like I said, he's weak. He's kind of floppy. He's getting stronger, which is great. We're using technology like NuFit.

Have you heard of them? Yeah, yeah, they're great. We had Garrett on the show. Yeah, Garrett's great. Yeah, phenomenal technology. Yeah, so we're using NuFit on him at home. And, you know, some great results. But, you know, teaching him to walk is going to be a risk.

You know, if he is walking and he's not, you know, kids fall, he's going to fall harder than any other kid. He's going to be weaker and he's going to have a slower reaction time. So should I teach him to walk or should I not do that because he might fall down those stairs and not be able to protect himself and potentially die? I mean, I want him to have as normal of a life as possible and have as much freedom as possible. So of course, I'm going to teach him to walk. Of course, I'm going to do those things. And I sort of think of that as, you know, with any technology, any sort of potential therapy, like side effects be dams, unless it's like there's a 90% chance he's going to die from this tomorrow. Well, all right, let's step back. But maybe he gets cancer down the line.

I'm at risk of that, you know. Cancer treatments are getting better. You know, can we live with those things? It's a difficult decision, but I think I would say yes. You know what I mean? Yeah. Yeah. And I think just the access and the ability to, as a parent, consciously decide what's going to happen to your child. I think that's where the argument needs to be made. What's going on right now stateside in terms of its availability? You talked a bit about stuff that's going on with the FDA, where they're at with the use of the technology.

Can you dive into some of that? Yeah. So, I mean, with the technology there, there are some human trials going on for very specific, and we're talking about CRISPR specifically, for very specific disorders. One of the big ones is sickle cell anemia, which affects African Americans and I think just black people in general. I don't know that if it's in other races very often.

I don't think so. But it's an easier fix because it's one base pair in the genome that's affected. And so it's just an easy thing to do. Single edit. Yeah, single edit. Whereas with my son, there's multiple genes. Some of those genes are really big. Some of them are small.

Some of them, they don't know what they do. So it's a lot more challenging. But I think recently, in one of the trials, I think it remains to be seen because they haven't really seen the side effects yet, but they made the edit in sickle cell anemia and it worked. And so this person potentially no longer has sickle cell anemia.

And I don't know how much you know about that, but that's a really painful disorder. These people have to go, whenever they have an episode, and I don't mean I don't know very much about it either. Obviously, I've never lived that, but they have to go to the hospital and take some strong pain medications, oftentimes get hooked on opioids because of that. So it has a lot of effects downstream, and so this is a huge step forward. You know? And I think they also do stuff with macular,

some types of macular degeneration that are also somewhat simple. So, I mean, the scientists are very interested in getting into human trials, but obviously they're cautious because like you said, they don't know

what the downstream effects are for a lot of these things if there's, you know, the technology is also not very, it's not 100% accurate, so they may take out this gene, but there's some base pairs on either side that they also might change on accident.

And so what are those effects? And, you know, there's some challenges still. But, you know, I've always, I go to some of these conferences for gene editing or CRISPR or whatever, and my whole job, my whole goal is to not only learn about it and meet these people, but to just give them a personal story that might encourage them to get into those human trials a little bit more. Get out of mice models, get out of the petri dish, and into humans as quickly as I can. And what does that timeline look like for you now? I know you'd mentioned two in the beginning, and then now you've switched to five years old

as a hopeful time that that could be potential. Hopeful is a big word there. Yeah. That's the main one. What does that look like? And I also know that you're working with, you guys, you and your wife, potential hopeful hopeful is a big word there yeah that's the main one what is that what does that look like and i also know that you're working with uh you guys that you and your wife had started a non-profit and then you've kind of switched gears to team up with this other non-profit that was already in place yeah talk a bit about them obviously i want to get as much steam rolling

behind this as possible but i also want to i want to know where they're at and what they've accomplished. Right. So, yeah, my wife and I started a nonprofit called the Deletion Duplication Alliance. But with my wife's work schedule and taking care of a special needs kid, another son, we have a daughter coming in less than two weeks. Congratulations, brother. Thank you. I appreciate that. Super excited. It was just overwhelming. I mean, I have my own,

I have a job that I also have to do. I work from home, luckily, but it was just, there's so many moving parts of that, starting a nonprofit, that it just became sort of like, all right, this is, I'm not going to be as successful as I want to be

if I'm doing this on my own. So I had a relationship with a mother in New York whose daughter also has the same diagnosis. And she started a nonprofit called Project AP, projectap.org. And so I called her up and, you know, said, hey, you know, this is what's going on. Like, we decided to sort of step back from our own nonprofit. And, you know, so I'm going to try to take a larger role in this. And I was already on the parent leadership board. And so just moving forward, just going to help them get their message out, our message now, get our message out, get people interested. And she's amazing. Her name is Bina Shah. And I honestly, knowing what I know now about what it takes to start a nonprofit and get it to be successful, I mean, I have no idea how she did it. It's crazy.

She's, I mean, obviously, I'm, one of the great things about, you know, just stepping away from my own nonprofit is that I get to work under her, and I mean, just the amount that I'll be able to learn from her, and it'll be, on a personal level, just, I think, a much better move um but they you know before you can do anything like a a human trial for any disease you have to understand the the syndrome or the disease and so you have to you know take patient surveys and find the commonalities between the patients and then write up a draft paper for, you know,

it's like a natural history survey, I think is what it's called, and figure out how it affects the patients and figure out what the commonalities are. And so what's really interesting about this is on the eighth chromosome, where these deletions and duplications happen, there's a lot of genes that are associated with like Alzheimer's, schizophrenia,

what are some of the other ones? A lot of different mental health stuff that you know they're getting like Alzheimer's Alzheimer's gets a lot of attention and rightfully so it's a horrible disease but you know part of the one of the side effects of figuring

out this our children's syndrome is that we might understand more about Alzheimer's, might understand more about schizophrenia. And this is pretty preliminary stuff. And there's Facebook groups that we're a part of. A lot of the parents are reporting that their kids don't get sick very often.

And you think of special needs kids as oftentimes having a weaker system, and so they'd just be more sickly. And these kids don't seem to have that. Get a runny nose every once in a while maybe, but really get sick just doesn't seem to happen very often. And so maybe understanding this more and understanding the genome of these kids might lead to you know better immunotherapy or something like that you know um so there's a lot of potential we uh uh you know we're getting our she is she has gotten

a lot of attention from a lot of really big foundations that give money for research. I'm not at liberty to say very much about that right now, but in the next couple months, there will be some pretty big announcements, which is fantastic. But what we really need to do is just figure out, we need money, obviously, but scientists that are interested. A lot of scientists, their initial you know, really help move forward that, uh, any sort of treatment, uh, finding a, you know, someone to study the, um, like the nutritional similarities between the kids. Like, is there a commonality between, like, maybe they're, they're deficient, all of them are deficient in, I don't know, vitamin D for whatever reason. Even though they all get sun and they're supplementing

and whatever, their body doesn't process it the same way. We need those sort of people to sign on and get on board. And we actually, we have a doctor right now in Houston that is working on the draft paper for the disease, Dr. Ocher, I think. I'm supposed to meet him on Saturday, driving to Houston. So, I mean, there's a lot of stuff, really cool stuff going on that's, I mean, like I said, I don't know how she did it, but it's fucking amazing. All right, guys, very quick break to tell you about a couple things I've been working on. Number one, my wife has put together an amazing ebook that includes 30 plus recipes of our

favorite foods to eat around the holidays to keep you trim and slim, keto recipes for dessert, as well as a number of other staples in our diet, ways we cook burgers, all the way to intricate recipes. But everything's easy and simple and highly delicious as well as nutritious and loaded with all the micronutrients your body craves and needs. No matter what diet you're on, outside of being vegan, get this book. It's five bucks at kingsboo.com. In addition to that, I am now launching my inner circle. What the hell is an inner circle? Well, following in the footsteps of great teachers like Ben Greenfield, Jay Faruja, and others in the fitness field, I'm launching my personal, private private one-on-one coaching and mentorship program.

What that means is you will master everything from the physical to the mental to the emotional and the spiritual. This comes with a decent price tag. So if you can't get in on that, I suggest you get me as one of the four coaches in Fit for Service, but you can check all that out at kingsboo.com slash inner dash circle. That's kingsboo.com slash inner dash circle. Yeah, and that's, I mean, it's a brilliant way to bring that forward with what she's done to understand like maybe this condition is so rare that people might not want to touch it because it doesn't affect enough people. But when you start to connect the dots and see that all these things, the concert of what's going on, those exact pairings potentially could fix Alzheimer's,

potentially could fix schizophrenia and all the other ways that that unfolds, I think that's really intelligent to gather because, you know, look, Alzheimer's has a ton of attention. Yeah. It runs in my family on my dad's side. It's one of the reasons I got into a ketogenic diet. You know, Max Lugavere, same thing. He watched his mom go through it, couldn't help her. And then he writes Genius Foods and continues on.

You know, and I think it's it's great when we can we have a personal reason to get involved and then from there we can start to connect the dots and see how many people it can help yeah yeah it's uh i same thing my my father is sort of going through dementia and alzheimer's right now, which is very painful to see, of course. And if studying this 8P deletions and duplications or both leads to a cure for that, I mean, you would think that's a huge thing.

And Alzheimer's, of course, gets millions and millions of dollars every single year from private donations and government grants and everything like that. So if we can sort of tack on to that our little tiny niche of a disorder, I mean, ultra rare, then of course we're going to do that.

If that's the reason why someone wants to study it, because they want to figure out maybe there's a link for Alzheimer's, like, great, let's do that. Like, let's get something going, you know? Yeah, any reason to get buy-in. Yeah, for sure. And buy-in, I think, is the perfect word. So, you know, we've got a lot of doctors interested at, like, Cornell

that are doing that natural history, their very beginning stages. And like I said, a guy in Houston, I think he's at Baylor Houston, not sure. going through that process, getting that paper, taking those steps, we'll be able to get these other doctors and other researchers, lab scientists that are interested. And the science is there. We think that the science is there. It's ready to go. It's just a matter of finding the right people to do it

that want to do it, that want to take that journey with us. And finding money to to get the to fund these things you know yeah um we estimate that it would be uh 10 million to a cure uh which is and that you know would maybe take a few years to find that cure but having that money we think that's the the estimate that it would take. In the grand scheme of things, that's a pretty good deal for the potential of what it could actually, the lives it could change not only for our kids,

but for other patients of other disorders as well. So we're working on it. We're getting there. At least a good starting point and a plan a way to move forward for sure um you mentioned stem cells what are some of the other potential therapies that could go alongside this um you know it's it's hard to say because I have a list of all of my son's deletions and duplications. I mean, they're just random letters separated by commas. And I've gone online and looked at the human genome database and tried to figure out.

Some of them, there's no known anything about them. A lot of them have to do with brain development, obviously. And, you know, it's... I think stem cells... I haven't done as much research on stem cells, but if they can put... Insert...

If they could get the body to express different genes through stem cells, I think that's how it works. I might sound like an idiot right now, but then that could be a potential. It would not be a permanent change. You'd have to continually get therapy for that over the lifetime of the, get injections every week or month or whatever, however long the stem cells last. But, you know, you're inserting the right gene

and getting the body to express that rather than its own genome, which would, you know, hey, if that works, let's do it. No big deal. That seems like it would actually be less risk, you know, hey, if that works, let's do it. No big deal. That seems like it would actually be less risk, you know, because then you just let it run its course and you just don't do it again. Yeah, less potential side effects there. If something did show up abnormally, you wouldn't have to necessarily top back off. But, you know, we don't even have to do, as far as potential therapies go,

you know, just doing everything that we can, you know, nutritional therapy. And other, using current technology that's, you know, developed for other things, like NuFit, you know, using that for him to see if that helps. We, have you heard of PRTMS, transcranial magnetic stimulation? Yeah. But using that for him to see if that helps. Have you heard of PRTMS, transcranial magnetic stimulation? Yeah. Yeah. There's a doctor in town that does that, Dr. Parameswara.

We've worked with him going through a round of that to see if that might help. It's a magnet on the brain to level out the brainwaves across the brain so everything is operating on the same frequency. We saw some benefit from that. Just a little bit more attention, a little bit more willingness to engage and learn from him. From our son, not from Dr. Parmeswara. So we're open for a lot of different stuff um i think you know per your suggestion when we first met i started giving him lion's mane

mushrooms a lot more uh increased that that what's it called the nerve growth stimulation nerve ending something like that with the brain yeah i think it's like nerve neurotropic growth factor something like that ngf and bdnf just giving him those those little maybe those little boosts you know and i mean i talked to uh brad burge of maps and he's not he didn't promote this by any stretch but you but as I'm talking to him about all the stuff that MAPS is doing with psychedelics, is that the right word? Yeah, psychedelic science. That's it. Multidisciplinary Association for Psychedelic Studies.

Yeah. psilocybin mushrooms were more understood in exactly how they work because if they help grow new, it seems like they might help grow new connections in your brain, more neurons, more connections and everything like that. I mean, that would be amazing. Yeah, the ability to increase cross-connectivity, increase neuroplasticity. Yeah. At least on the preliminary work,

I think the Beckley Foundation is doing in the UK, there seems to be a bit of that happening. And it's very low toxicity. Extremely low. Extremely low, right. And that's something to point out for people right now that are saying, you would give your kids psilocybin mushrooms and the fucking hair on the back of your neck stands up yeah the truth is it is by far one of the safest compounds on the planet yeah if you compared it to any pharmaceutical there's no comparison on safety yeah and i just i mean i want to say that that's not project ap stance yeah i mean that they don't they're not they're not looking at that

no doubt on a personal level that's what I'm looking at. Yeah, no doubt. But you're in a position where everything has to be looked at. Everything has to be given a fair shot. Everything that could potentially help, you have to honestly look at and say, can this work? Can this be something that alleviates some symptoms, helps some growth, helps some patchwork take place that is relatively permanent. That's not a pharmaceutical pill you have to be on the rest of your life, but something that can actually change the state of the brain for the better long-term.

And I think those are very valid points and very valid questions when you think of the potentials of psychedelics and where the science is going, as they've looked at the brain over time, and even more so now with the Renaissance taking place scientifically. You know, we have Roland Griffiths at Johns Hopkins, who's been on the forefront of studying that in a variety of ways for terminally ill cancer patients and mystical experiences. Can we create

a scientific study that would show mystical experience? And obviously that's different than what you're looking at, but it's there and they want more. So they just funded Tim Ferriss, my buddy Craig Nuremberg, I think I mentioned that to you. They just funded a $17 million wing at Johns Hopkins for the studying of psychedelics. And mushrooms are at the forefront of that. And just since they got that to go through, a number of other major universities, I believe University of Florida Gators and Ohio State Buckeyes are also wanting in because nobody wants to be to to what could potentially be one of the greatest uh significant changes in modern medicine through something we've had long before humans existed yeah yeah i mean i think uh i've heard i guess the like the stoned ape theory about like how we like you know way back in our evolutionary history apes walking around they find these mushrooms they eat them and you know they they're psilocybin mushrooms and that

helps create like the the the increase our brain capacity changes and changing our brains and that's you know maybe how part of the story about how we got into being humans from apes yeah now we started the the foundation of language was a big component of that yeah you know our ability to communicate through story uh instead of just pointing and drawing you know sticks and dirt but actually throwing shit at it yeah creating creating language uh i don't know you know like for sure when you talk about that you know you have every argument you know it's no it was fire and no it was me no it was our ability to create tools and all this shit and it's like sure but if you really think of something that's has potential of that ability and certainly this you know we can go back and forth on this at

this stage of our understanding of it but if on a hundred years from now we fully understand the potential of these plant medicines and we say we know for a fact this does increase a lot of the brain's abilities in a variety of ways and does so to the hardware as well as the software it's it's uh i think that would have quite a bit more uh steam behind it you know in that theory of our evolution for sure yeah and i i mean i have no idea how widely accepted or rejected that theory is but it i mean it's a fun theory to think about and it you know on its face it seems like it's possible yeah um and so you know when i think of that the the psilocybin mushrooms and you know, they're, you know, if that theory is part of the story, then you know, having, you know, microdosing someone with

this disorder, I mean, they don't, the kids don't speak, you know, and I don't know that they, I think some of, it depends on if you, if they have a deletion, a duplication, or both. You know, their outcomes are very different. My son has a deletion, a duplication, or both, their outcomes are very different.

My son has a deletion and a duplication. Him speaking may not be in the cards. Sometimes we think he's saying hi, but he's probably just groaning. If that helped wire his brain in such a way that he can say, Dad, why wouldn't I do that? It'd be crazy.

I'm not trying to get him high or anything like that, but maybe it's just a small dose on a regular basis that would get him there. I don't know. But going back to project ap where you know they're focusing on more um you know like gene therapy technologies and stuff like emerging technologies i think is a good way to look at it um you know even stem cells are not totally understood so yeah and that's i mean from a legal standpoint um and you know really when you look into potentials, I think that probably is the best route and the best fit. Everyone, people have an issue with me doing drugs in the safety of my own home.

With me choosing to do something or even live a certain way, right? People have an issue still to this day with a man having sex with another man in the comfort of their own home that doesn't affect anyone else but them, right? And so if you put it through that lens, people have a huge issue with kids taking drugs, quote unquote. And there was a great episode on Weedikit of, I think it was called Stone Kids. It's one of the first four episodes available on Viceland. What's it called? Weedikit. So it's all about cannabis.

Okay. Like Syndicate, but Weedikit. Yeah. And it looks through the lens of how cannabis affects people through all different walks of life, through legality. I mean, they did an episode on veterans with PTSD, but this stoned kids episode, I think was filmed largely in Oregon and it was on kids with cancer and the parents were giving them not micro doses, but probably some of the gnarliest macro doses of Rick Simpson oil, which is a very, very highly concentrated THC. And it has, of course, many of the othernarliest macro doses of rick simpson oil which is a very very highly concentrated thc and it has of course many of the other constituents in it cannabinoids and terpenes as well it's an

organic product but the kids are living and they're happy and it allows them to eat and it allows them to sleep and allows them to enjoy life And it's such a beautiful episode because you see the kids and you see the families and those families are worried. Like, is somebody going to take my child away from me? Is this going to stop? Currently, at least when the episode was filmed, I think I watched it a couple of years ago, they were able to do this. And I don't know where that's gone. I don't know if they've done a follow-up episode or not, but at least at the time it was filmed, you could see that those kids have a quality of life that they did not have prior to cannabis use. And that should nullify the fucking argument immediately just to see that impact. Yeah. And it really is quality of life that we're

aiming for. Whether it's CRISPR or stem cells or whatever the therapy, increasing quality of life is our whole goal. My wife and I think of it as, Cha-Cha is just going to be our roommate for life. And I mean, we love him, so it's going to be a great roommate. But I'm going to be probably feeding this kid without intervention, hand-feeding this kid for the rest of my life. And one of the hardest things that I think about is we all want to outlive our kids, obviously, but in this situation,

you know, what's going to happen to him? All of a sudden, all of a sudden, you know, his dad is dead, and the person that's been feeding him and holding him and carrying him through his life, what is going to happen? What is he going to think? he's without intervention

that's going to be a very confusing time for him and I just I mean I hope that something is there to where he at least better understands the situation and can do something about it yeah better understands the situation and can do something about it. Yeah.

Fuck. I've never talked about that before. Jesus. That's a big one. Fuck. Yeah, brother. That's a big one.

I've thought about it a lot, but I've never talked about that. Yeah, I mean, that's clearly a big fear that he you know one day i'll die and he'll be alone he's not gonna be alone though he's got a big brother and a little sister yeah i mean if it were up to me we'd have have just tons of kids. But my wife is the one that she's – I don't think she'll ever go through another, but one of the pluses for having more is that we're increasing our son's circle of care for the rest of his life. But I don't want to... I think about that too,

like the burden of putting that on his siblings. Hopefully it's a burden that they are eager to take on, but they didn't ask for that. And so if we can do something to prevent that, that's the goal. Finding something to... A permanent therapy that gives him a quality of life that gives him some independence that lets him communicate,

um, lets him eat regularly, you know, that sort of stuff. Yeah. Fuck. Man, brother,

thank you so much for coming on and sharing and opening up. Yeah, man. Thank you for, thank you for having me. sharing and opening up. Yeah, man. Thank you for having me. I really appreciate it. Like I said, people, if they can go to project8p8.org, they can learn more about the syndrome and learn about what's the latest on the research. Obviously, if they're in a place where they can donate,

there's a donate button. We can certainly use all the help we can get. If you're, if you are a scientist or know a scientist that might be interested in these, this condition, you know, or reach out,

send an email, and let us know for sure. I'll link to everything in the show notes. You mentioned a Facebook group or two. Yeah. I mean, there's a public Facebook group for this. I would have to look it up. But if you just look up 8P, the number 8, small letter P,

deletion, duplication, you'll find it. And I'm sure it's on the website as well, projectap.org. Thank you so much for coming on, brother. Thanks, Kyle. I appreciate it. Yeah. Thank you guys for listening to today's show with Brad Swale. Check out the show notes. If you can, if you have a dollar, if you got $5, if you got $10, perhaps more importantly than your money, if you have a way to connect us to

scientists who can help people of interest who might be able to take on some of the more rigorous science that stands ahead in their mission. And of course, be sure to follow their nonprofit organization to see exactly what's going on behind the scenes and help out where you can. Thank you guys for listening today. It means so much and I'll see you in a few days.