Podcasts about fshd

A diagnosis can change your life, but it does not have to decide what comes next. My guest Paul Bugeja has built a life shaped by curiosity, career change, travel, creativity, and a determination to keep moving forward. Paul lives with facioscapulohumeral muscular dystrophy, or FSHD, a condition he calls his “dark angel.” We talk about how disability has influenced his choices without defining them, why staying active matters to him, and how personal agency has helped him face uncertainty without becoming trapped by fear. Paul also shares his path from acting and writing into journalism and digital media, where he now works as a quizmaster. We explore disability advocacy, media accessibility, the role of AI in journalism, and the danger of losing critical thinking. Paul's story reminds us that resilience is not about denying challenges. It is about understanding them while continuing to choose how we live. Highlights: 01:10 – How moving often helped Paul learn to adapt. 12:15 – How a gym visit led to his FSHD diagnosis. 20:39 – Why disability gave Paul a stronger drive to live fully. 22:53 – How knowledge of his condition gave him more agency. 38:35 – Why accessible media still has room to improve. 45:57 – How staying present helps Paul manage worry and fear. About the Guest: Working as a quizmaster for a major media organisation isn't somewhere I could have predicted I'd end up professionally, but, then again, life has taken so many twists and turns it doesn't surprise me this is where I currently find myself. Despite early aspirations to be an actor, I completed a double degree in Arts and Commerce at the University of Melbourne, with the final year spent on exchange at UC Berkeley, California. On my return to Australia, not to be denied, the ever-persistent actor in me got me admission to the prestigious Victorian College of the Arts Drama School: the decade or so following saw me immersed in the challenging but exciting life of the struggling actor. This period was also the launching pad into studies in writing, editing, journalism and screenwriting, which I did as I worked in book publishing and wrote half a dozen books, even as I edged into the rapidly evolving professional world of content, digital marketing and journalism. Throughout this entire time, I've lived alongside and managed my “dark angel”—a diagnosis of facioscapulohumeral muscular dystrophy—which has only served to galvanise me further to live a life less ordinary along the road less travelled … And that has made all the difference. Ways to connect with Paul**:** LinkedIn https://www.linkedin.com/in/peebee/ About the Host: Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog. Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children's Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association's 2012 Hero Dog Awards. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset . Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts. Transcription Notes: Michael Hingson  00:04 What if the biggest thing holding you back isn't what's in front of you, but rather what you believe? Welcome to Unstoppable Mindset, where inclusion, diversity, and the unexpected meet. I'm your host, Michael Hingston, speaker, author, and advocate for inclusion and possibilities. This podcast explores how the beliefs we carry shape the way we live, lead, and connect with others. Each week, I talk with people who challenge assumptions, face adversity head-on, and show what's possible when we choose curiosity over fear. Together, we focus on mindset, resilience, and the small shifts that lead to meaningful change. Let's get started. Hi, everyone. I'd like to thank you once again for coming to another episode of Unstoppable Mindset. And if you're new to the podcast, we hope you enjoy our episode today. We're glad you're here wherever you may happen to be. Today we are communicating a long way away. We're communicating with Melbourne, Australia, to Paul Bugeja, and Paul is fondly known as a quizmaster. We're going to have to find out more about that, but he's had a lot of interest in acting and media and such things as that, and has had clearly a pretty adventurous life. And again, I'm sure we're going to hear a lot about a lot of that today. So, Paul, welcome to Unstoppable Mindset. We're really glad you're here. Paul Bugeja  01:44 Thank you for having me, Michael. Michael Hingson  01:46 So why don't we start? I love to do this with the early Paul, kind of growing up and how things all got started. If you remember back that far, or at least as far back as you remember, or what you were told anyway. Paul Bugeja  01:59 You know, pretty standard like childhood story for me. Grew up in the green leafy sort of suburbs of Melbourne. You know, did all the things that kids do in their growing up years. My my mother actually divorced my father quite young for me, so that was a little bit of a a critical sort of point for a child to sort of, you know, have to grapple with, but um, it was pretty smooth, and you know, um, it didn't really disrupt my childhood, except it meant that I moved around a lot when I was quite young. So I probably moved about seven or eight times by the time I was maybe eight years old. Um, but I think, in a way, that that that sort of has worked for me because it meant that even as a young child, I had to learn to adapt and change and evolve very quickly. Particularly when it came to meeting people, and you know, as a child, obviously making friends-that's one of the trickiest parts as a kid sometimes. So I think that actually stood me in good stead in in that regard, yeah. Michael Hingson  03:04 Well, I I didn't have to move a whole lot growing up. We moved from Chicago to California when I was five and stayed in the same house since college. I have moved a bunch of times, but those things happen. I understand what you're saying. I'm I'm used to it, but am am of the opinion that I'd rather not move again. It is a lot of work to move, and now also it's just me. My wife passed away two almost two and a half years ago, so I don't want to pack and move again. But yeah, well, we're in a house that we built, and and so we built it really around her because she's in a wheelchair her whole life. So it's an accessible house, but it's a very comfortable house. So I I have no complaints, and and the dog and the cat seem to like it as well. So we're here. Paul Bugeja  04:01 It's a win for everyone, and I think look, that's that's a really interesting. I had this very similar conversation with a friend yesterday about there's a time to put down roots and there's a time to be a you know a rolling stone, and and for some people that's at different times in their life, you know. So I I can understand why you would have chosen to find your comfy spot to settle into and enjoy. Michael Hingson  04:23 Well, and I have a good mortgage rate and all that, so yeah, we're happy with with things the way they are. And as long as the dog and the cat are happy, I can't complain a bit. Paul Bugeja  04:33 Excellent, excellent. Michael Hingson  04:34 But but now you're and and you you're not moving as much around anymore. Paul Bugeja  04:40 Sort of the opposite, actually. I think, like, to to go back to what we were originally discussing. Like, I think having moved so much as a younger person has meant I've lived a life that's almost constantly moving. Like, there certainly have been periods where I've lived for reasonably long periods in the one place, but particularly over the past. We maybe 10 to 12 years or so. I've moved like literally maybe 10 to 12 times. Like it's becoming, Michael Hingson  05:09 it Paul Bugeja  05:10 almost becomes a bit addictive. Sort of the ability to to be transportable when your professional life allows you and your personal life allows you as well. Michael Hingson  05:18 Yeah, I can understand that. For me, I don't want to go through all the rigors of packing and finding a new home and all that, so we're good. But but it it's okay because I can go anywhere from here, and so that works out pretty well. So I'm I'm content, and that that's the way it it should be. So we'll see how it all goes. But I'm glad that you did well, so you grew up, had kind of a normal life, even though you moved around a lot. Yeah, did all the things that that that kids do growing up, and so on. And where did you go to college, or did you? Paul Bugeja  05:53 Yeah, so I my original, I've I was a bit of a perpetual student for probably you know the first several decades as an adult, my original degree was from the University of Melbourne, which is one of the sort of larger universities in both Melbourne and Australia, and I did a double degree in arts and commerce. But you know, I had long wanted to be an actor, and so originally, like when I finished high school, my my intention was to audition for drama school. But my mother very wisely convinced me to go to university first, and then check that out. And if I didn't like it, then maybe audition for drama school a bit later on. And it was, as mothers can be on most occasions, very sagely advice from her, because the thing that she wasn't aware of was that even though I I definitely enjoyed the academic aspect of my studies at MLB Uni, it has a very strong theater department as well, and very big names have actually been through there and gone on to bigger and better things, namely Kate Blanchett. She was one of my colleagues back in the day. So you know, it was a it was a proving ground for talent. And so I did a lot of theater during my my studies at the University of Melbourne while completing the academic side as well. So I never quite lost that sort of underlying desire to maybe go on and and study acting and maybe do some acting. I actually completed the final year of my degree at Cal at UC Berkeley, which was an amazing experience, and sort of also launched me into the next part of my life. So that that was at a time when you know, like I think in a lot of ways, more and more students were traveling between countries to study. It was becoming a real thing to study overseas, so it was such an amazing experience to finish at Cal. Michael Hingson  07:48 So, do you keep in touch with Kate at Paul Bugeja  07:52 all? Haven't seen Kate in probably maybe 20 years or so. We kept in contact during the beginning of her career, of course, and then you know that life has taken her to such places that it's almost impossible to keep Michael Hingson  08:07 touch, right? Paul Bugeja  08:08 That's right. But you know, I dare say, if I think she's probably maintained the sort of personality and character that she had when I knew her, which would mean that if I bumped into her on the street and I said hello and gave her a bit of a nudge about where we knew each other from. She'd be the first one to lean into that and and you know be quite happy to reminisce on old times as you know she's not an aloof sort of person. I think that's my feel about her, even given her amazing success. Michael Hingson  08:37 I've never had that impression of her either, so I I'm with you. Well, that's pretty cool. What What took you to Berkeley for your last year? Paul Bugeja  08:45 Yeah, so I actually started working during my studies on campus at the university, and I worked in the international student office. So I was dealing with a lot of incoming study abroad and exchange students, which meant I began to have a real desire to do the same thing myself, and initially I was looking at a couple of other universities like Georgetown. I think NYU was one of the options, and I actually met a guy from Cal who was like, "You should come to Berkeley and study. It's an amazing institution. You'll love California. It's so similar to Australia, and I'd I'd I'd actually been to California before my first overseas trip when I was 19, and so I had a taste of California already. So initially, I was looking at the whole sort of Cal system, the whole you know UC system. So I looked at UCLA, UC San UCSJ maybe and anyway yeah and and then I fell and I fell in Berkeley as the final one just because what a great city to live outside of you know San Francisco's such a beautiful city and and yeah so I ended up spending an entire year there which was just like you know life defining. Michael Hingson  09:57 What'd your mom think of that? Paul Bugeja  10:00 Yeah, typical of mum's. There was a lot of tears at the airport, but you know, and this was you know like at a time when social media was really not even happening, so it was all about the phone calls regularly. But she was happy. She's I'm very lucky in that, even though I'm an only child, mum's not a clingy a clingy mum, you know, she has always encouraged me to just go out and do everything that I possibly can, and and she would never, she would rarely, you know, get get in the way of me living out my life and my dreams. Michael Hingson  10:33 Do you still? Is she still here? Paul Bugeja  10:35 She is. Yep, she's um 78, so she's you know I'm still a youngish older person, and even though we don't, we sort of you know like see each other as much as maybe I'd like because we don't live in the same place. You know, we we talk every two days or so on the phone, and I stay in regular contact. And yeah, it's it's still a very very strong relationship. Michael Hingson  10:56 That's cool. That that's a good thing though. So you you went to Berkeley. You were here. You were out here in California for a year, and then what happened? Paul Bugeja  11:05 Well, I actually I bounced back to Australia, feeling very encouraged to to follow my acting pursuits because I I did a couple of shows at when I was at Cal. I did one drama class as well in the drama department, you know, made some lifetime friendships and and felt very connected to myself as an actor again. And so, even though originally my plans were to apply to become a diplomat through the Department of Foreign Affairs and Trade, the acting thing was a bit too strong. So I came back and and felt a little not torn, but certainly I had to I had to weigh up the competing desire to want to be an actor against the fact that I had a great degree that I could maybe go on and do something completely different with. So in fact, I spent a year thinking about that and ended up quite on a different track and enrolled in a master's of environmental studies, which you know was something that interested me definitely. And but decided that I would, in addition to drama school as well, which I did do, and I got into. So I did one year of that master's, and then I went on to study at the Victorian College of the Arts, which is one of the big three drama schools in Australia, and so I finally got to that took that circuitous route to drama school, despite my mum's earlier advice, and she was happy because you know I got there under my own auspices in terms of I'd made a decision as an adult to finally get there, rather than maybe as an excited teenager who you know could obviously do so many things, and so I had both the academic degree, and now I was into a program that I'd always wanted to sort of be involved with. Michael Hingson  12:49 Right. Well, and and that that's fine. That makes sense. Yes. So I'm not sure when to bring this up. So I'll bring it up now. Sure. Tell us about your dark angel. Paul Bugeja  13:01 Yeah, absolutely. So probably in my in my in my late 20s, I started working at a university in back at University of Melbourne. Actually, my old alma mater, and by then, you know, I was actually you know sort of I I was doing some acting, you know, some professional acting, not a lot of it, but enough to sort of be remain interested. So I needed a part time job on the side, you know, to to keep it going as most actors do. And when I started working at the university, I became very interested in fitness as well. I joined a gym and started going to the gym there and made some sort of friends with the local personal trainers. And one day I was doing some training and on one of the big, big sort of bouncy medicine balls that you can sit on for balance and training work, and one of the instructors came up to me and said, "Do you realize that your scapular wings? And I was firstly thinking, "Well, what the hell is my scapular? And then I sort of made sense that it was my shoulders, you know. And and I said, "What do you mean? He said, "Well, when you do upper body workouts, your scapula has quite a lot of movement in it, and it's quite visible. Now, I've always been a very thin person, like I've always sort of been. We've joked about being a tall, skinny dude, you know, and and so I I'd never thought anything about maybe the fact that my my shoulder blades were a bit more prominent. I figured that was because I was a slim person, you know. Of course, so he recommended I see a physiotherapist, and I did. I saw a sports physio in case I'd injured myself or there was some underlying issue. After a couple of sessions with a sports physio. I was referred to a neurologist because the sports physio had some inklings about it may be being a neurological condition potentially of some kind, but had no idea what it might be. And this is when I guess my dark angel first really. Began alerting me to its presence in the background of my life, and I'll explain why I call it my dark angel in a moment. Yeah, the neurologist and I did some tests, and I went in for a biopsy, a muscle biopsy, and I was diagnosed with one of the variants of muscular dystrophy, which is fascioscapiohumeral muscular dystrophy, so it affects the face, the humerus, and the scapula, but in general affects the muscles across the body. It's a degenerative neuromuscular disease. It's not that common; about one in 8000 have it. So you know, enough people have it that it's out there. Some people live with live with it their entire lives and don't know they have it for the reasons that I've just sort of elaborated on, which are it can it can be there but be so minor that you just think it's because you're a slim person or you don't have much you don't go to the gym so you don't work out so your muscles aren't growing or whatever. So yeah, and I was not that thrown by it at the time. It was it was in our family, so it wasn't that much of a surprise to me that maybe I had it. Given that another family member, even though they're quite distant on the family tree for me, also had it, and yeah, I began to just think about you know like what life would be like with this condition, and you know began to have regular sort of checks with the neurologist and you know other sort of allied health professionals around how to manage that. Luckily, it was very my and still is very mild in terms of how severe that it can be. But as I sort of began thinking more about my professional life. I I actually took on a an editing and writing degree and a screenwriting degree as I started to move away from acting because I figured I am a creative person. I love writing and I want to improve my craft. I was interested in journalism as well and I could do that as part of this degree. Paul Bugeja  16:58 So I started studying and that then led to me actually writing a couple of books, four or five books, working as an editor, and then at one point I began thinking, I think I need to write my own book about my journey with this condition, or you know, disability, whatever you want to call it. And I had watched the TV show Dexter, which you may or may not have watched. Yep, and Dexter talks about his dark passenger. You know, as and that's the the sort of I mean, it's a weird correlation. I know in some ways, but that's the serial killer in him. That's his dark passenger. But it really resonated as um this idea of there being this sort of passenger in your life. You know, for whatever reason, whatever it is, and I didn't obviously want to steal that sort of figurative term, but I began thinking about a dark angel instead because, for me, it's a double thing. I mean, I was whatever Catholic. I'm not a practicing Catholic anymore, but you know, the notions of angels around us is something you know we all sort of think about, I guess. But the notion of my scapular wing and those being wings as well was very sort of resonated with me, and so I began feeling that for me my entire life this dark angel had been somewhere in the background, very very far in the background to the point where I wasn't even really aware of that dark angel, and then of course when the diagnosis came along, the dark angel began to make its presence more known, and yeah, and and then over time, I'm very, I live with, you know, like anyone with any sort of disability or chronic medical condition, like you live with it 24/7, and some days it's more of a burden, other days you don't not even aware of it, but you have to learn to live with it, and and so I now feel like I have this sort of dance with the dark angel, I like to call it, who sometimes is more present in my life and sometimes much more in the background. Michael Hingson  18:53 So, what kinds of things does it sort of limit you, or what what do you have to do to to make sure you don't let it get too much of a control over you. Paul Bugeja  19:04 Sure. So for me, the biggest thing I ever did was start going to the gym. You know, I did that just out of pure practicality because there was a gym on campus. It was very easy to join it. It was very close to go to on my lunch break, and so I've now maintained a really rigorous gym schedule, even though my upper body strength is quite weak and limited. I've been able to, I think, the my GP and say allied healthcare professionals like physios and exercise physiologists and occupational therapists have all commented that my gym program is one of the things that may you know this it's a may but may have prevented the condition progressing more severely than it has. So staying fit has been really important. I think by nature, I like to call myself a pragmatic optimist or optimistic pragmatist. By nature, I'm a practical person. I sort of feel as though, unlike I mean, look, everyone manages the news of some sort of health situation differently. You know, some people it can lay low, and I understand why because it can be very confronting, and every condition has a different set of limitations, like you know, it can be quite severe for some people. Like my my cousin had a different form of muscular dystrophy, Duchenne muscular dystrophy, which meant that he was in a wheelchair from the age of five and died at the age of 28. So you know, like like in my case, I feel blessed on some level that my condition is slowly deteriorating, but I do think that I'm lucky that I have enough of a practical and positive attitude about not letting it. I don't call, I never ignore it or or deny it, but I call about. I just resist it. The resistance is there. Like I I push back against it. So mentally, I try to stay positive physically. I try to stay healthy, but you know it does limit me. I have part of the condition. I have something called foot drop, which means that my feet catch a lot as I walk. So I trip a lot. So I I have damaged elbows and knees a lot because of that. So as a consequence, I have to be conscious when I walk. It's not just a. It's not like for most people, walking is an unconscious action. Of course, for me, it's a conscious action to ensure that I trip less. And of course, as I get older, tripping becomes a thing as you get older anyway, because you know your muscle tone changes and you know all kinds of things. So you know, it's about almost in a way you have to become. You do have to be aware of it all the time, and you have to manage it all the time. But that doesn't mean it has to become a burden. I think in many ways it's pushed me the other way, which is it's made me have a lust for life. It's made me want to do more. It's it's probably pushed me to be more nomadic while I can be, just in case there's a point where I can't be, and that sounds a little bit sad, and I mean probably in some ways, but I see that as a positive. Like a really small example I can give you is whenever I visit my mum, like I don't drive, so I use public transport like trains and busses and and the like. And if I catch a train to to go visit my mum, she always insists I'll come and pick you up at the at the train station, rather than you walk to my place, and I insist every time I'm going to walk because while I can walk, I want to walk. You know, so I don't. It's not. I reject. I don't reject her kindness, and I understand it. But it's me saying to the dark angel, "No, I will. Does she? Michael Hingson  22:36 Does she understand Paul Bugeja  22:38 it? I think so on some level, but she still Michael Hingson  22:41 wants to come and get you. Of course, Paul Bugeja  22:43 she does. Of course, there can be the tiniest trickle of rain, and she's like, "Oh, you can't walk in that rain. You know, I've got an umbrella, mum. No, no, no. You know, it's all that stuff. Um, it's it's delightful of her, and I'm glad, and I'll always expect the offer in those situations. But um, yeah, no, she um, you know, unfortunately, and I think a lot of parents will who pass on genetic conditions because this is a genetically passed on condition for me. She feels a sense of guilt about you know having passed on through her line, and so I think she we've talked about it a few times, and it's not a heavy weight on her shoulders, but she has a sense of it. Yeah. Michael Hingson  23:20 Well, I I appreciate that. What was it like when you first got the diagnosis? Though, did it did did it depress you? Did it kind of knock you on your ear in in any way, or did you really decide almost right from the beginning? Okay, this is here, but I can deal with Paul Bugeja  23:37 it. Yeah, it look, you know. So I'm writing a book about this, as I was saying at the moment, and in the in the chapter of the book that I'm writing, I think I wrote something along the lines of life just moved on. You know, like there was no discernible difference. Like I didn't feel physically any difference because there was no physical difference. But for me, I mean, you know, I I work in the media and I've worked in the knowledge industries of any kind for quite some time. Knowledge is power, you know. And and I would rather know about something and then be able to to to have some agency about how to act on it than to bury my head in the sand. Or, but by the same token, I can understand that knowledge can really throw some people. And you know, I have a friend, for example, who I was diagnosed with MS, and that can be an awful condition to be diagnosed with because it can progress very quickly. And for her, the knowledge wasn't great. You know, it's it's been a very big challenge for her. But you know, five years on, now that she has much more knowledge about it because she's had to live with it, she's going the opposite way. So you know, everyone is different, but for me, the knowledge actually catapulted me forward rather than weighed me down. Michael Hingson  24:46 Well, that was a choice that you had to make, or that you got to make, and you made it. And you're you're choosing to move forward with life, which is great. Paul Bugeja  24:55 Yeah, yeah. I feel lucky. As I said, I know. Everyone can can make that choice because of their own set of circumstances, and I do feel lucky about some of my circumstances. And you know, so I don't think everyone can necessarily be that practical or optimistic about things. But I encourage people to you know take a breath and and try and sit with whatever it is that they have to manage at any particular time, because you know people. A lot of people have a lot heavier challenges than I do, and they meet them as well. So it's possible to meet your challenges, I think, even if it limits you still. Michael Hingson  25:36 Well, so it's something that you live with, and so on. And I appreciate that. What what makes you get out of bed every day and and move forward, or is that what what you've been describing? Paul Bugeja  25:48 Look, I think I mean you know I'm I'm an I'm a lark, so I'm at about 430 in the morning, and I'm a Monday person, and I had this conversation with someone just this past Monday at the gym who you know dragged herself into the gym, and she was you know can't be bothered. I hate Mondays so much, you know, blah blah blah. And I get all that, you know. People love their weekends and a break. I love, I love the beginning of a day, and I and I have no problems getting up because I love the thought of there being so much in front of me, you know. And and even as as I grow older, and and you know, life obviously begins to go into a different phase. I still feel there's so much ahead, and and and it sounds a little bit Pollyanna of me, maybe, and a little bit overly optimistic, and a little bit Hollywood. But you know, I feel so hungry for life, and and even though that doesn't mean my life is perfect by any means, and that every day is perfect, and that there are some days that are are challenging. I face that all the time, as do we all in our different ways. But I I just feel so eager for the things that I mean. I have a great professional life, I have a great personal life, I have great friends, I have a good family. You know, my health is fine given the situation. Doesn't mean it's perfect, like I just said. But I don't have much to complain about, really. So, really, getting up is each day is is not a hard thing for me. It's it's it's a joy most days. Michael Hingson  27:15 So, are you married? Paul Bugeja  27:17 No, single. And this is, and I often frame conversations with this because sometimes my friends say to me, "Gosh, you have a great life, and I say, "Yeah, but I chose to be single, to not have children, and to not have pets-the three big things that change the course of your life sometimes in a good way, quite often. But also, I have more choices ahead of me because I am single and childless and petless, you know. Michael Hingson  27:42 Yep. Paul Bugeja  27:43 But you know, I don't. I'm not. I don't. I don't feel. I feel like I could have made other choices around this, of course. And I don't think there is a right or a wrong choice. It's just you have to find the right choice for you, especially when it comes to these big life choices. Michael Hingson  27:59 Well, you know, and when I got married, my wife and I had discussions about children, and she felt that she didn't want to have a child because she was in a wheelchair, and she felt in her specific situation, it would have been a lot harder on the body, and she would have been in bed a whole lot during a pregnancy, and she was afraid she would lose a lot of the the upper body strength and so on that she had. And my belief was that was her choice to make, and so we we both decided that we didn't want children. We would very happily entertain our nieces and nephews and throw them out of the house at the end of the day and send them home, which worked out really well. Paul Bugeja  28:49 I can I can understand that choice, and I I certainly I always thought I would be a father to be to be honest about that. When I was in my late teens and early 20s, it was forefront of my mind. Even though I had all these other adventures planned, and I had a couple of opportunities, actually, probably in my 30s, where I could have chosen to go down that road. And yeah, around the time I was diagnosed, I began thinking what that might mean. Like, and I began to not fear passing on my my FSHD to my potential children, but because often it passes through the female to the male, so it's less likely to pass through me. But if I had a female child, I might have passed it on genetically to her, who then passed it on to my grandchild. And not that that should stop anyone ever wanting children, but to your point and and the way you and your wife discuss the situation, I I made a conscious decision that probably given the life choices I was making around my career as well and other and personal life, it might not be the best choice. So yeah, I can understand where where. If Speaker 1  30:04 you enjoy Unstoppable Mindset and would like to help us continue bringing these conversations to you each week, we've created a way for you to support the show. Your contribution helps us cover production costs and continue sharing stories, insights, and ideas that inspire people to live with purpose and possibility. If supporting the podcast feels right for you, you'll find the link in the show notes. Thank you for being part of the Unstoppable Mindset Community. Michael Hingson  30:36 So, in in your life, what is one of the well? What would be the greatest thing in your life, personal or professional, that you've experienced so far? Paul Bugeja  30:47 The greatest thing, yeah, it's a it's a great question. That's a Michael Hingson  30:52 toughie because there are probably several. Paul Bugeja  30:54 Yeah, no, there are, there are. I mean, you know, I think, and this will seem a little sort of not so great. I mean, as in not great. Sorry, but I think the the first job in journalism that I got, which was working for the Guardian, the Australian Mars said version of the Guardian, that was pretty amazing for me because I had I had thought, and it wasn't as a journalist. It was as a like a community sort of an audience sort of person, basically. So I wasn't writing and I wasn't generating content, but just to be finally in a media organization after probably 10 or 15 years of always thinking, God, I'd love to work in the media. I'm a real news hound. I love news. I love current affairs, and even though for some it was just getting a job, for me it was taking a step into something that I had thought about for a while, and finally, and you know, working for a really reputable and very well known masthead as well, that had a lot of credibility. So that was pretty exciting, and and that sort of set me on the path of, I think this is where I will stay now if I can. Even though, as you would know, the media is under a lot of pressure to sort of evolve with a lot of external threats to the way it works and and you know staying financially viable. So I've sort of put myself into a very hot pot, and I hope I'm not the frog that jumps out. But I don't think I will be. I think I've managed to forge a bit of a career now that will keep me going. So yeah, it's not a a life like sort of fireworks sort of moment, but it was a it was certainly the day that I got the phone call saying we'd we'd love you to come and join us was was you know very similar to that? I got the phone call from drama school saying you got into drama school. It was a real like everything felt lifted. You know the whole I felt like I was floating that day. Michael Hingson  32:52 Yeah, I'm with you. So what other kinds of jobs then did you progress to over time? Paul Bugeja  32:59 Yeah, so because because I was pursuing acting for for quite some time, probably for about 10 to 15 years, really. You know, I had to do what most actors do, which is work a lot of other jobs. You know, like you just have to. The work is never constant, even for the for the biggest actors in the world. You know, I mean, most of them obviously work constantly, but you know, like to be a working actor is is never let anyone say that being an actor is not a real job. It's a really hard job, you know. And so, I I worked for a long time in casual jobs. I worked in a lot of theaters in in like the sort of the ticketing sort of area of of theaters. So I worked at both the Sydney Opera House and the Victorian Art Center, two big theater. You would know the Sydney Opera House, obviously, but yeah, Victoria Arts Center is another big theater organization in Australia. And while I was doing that, I began doing some freelance editing as a book editor. This was where I really began getting interested in content and copy, and and I had the part-time job at the university while I was studying and sort of doing all these other casual things and acting, and a role came up working in digital sort of content with a large betting agency. So you know, sports betting, which is very big in Australia, and it was managing their blog, their sports blog. So lots of content about what's happening in all the different sports, but you know, sort of a marketing slash copy role. But it was my first foray into digital content, you know, and this was at a time when it was really starting to amp up, and that therefore, you know, made me really think much more about journalism and and wanting to pursue that. So that was sort of the springboard into working in digital marketing, working as a sub editor, and then sort of finally landing this role at the Guardian, which didn't last super long, unfortunately, because I was completing a master's in publishing and communications at the time, and discovered that I. I'd left I'd left Melbourne to move to Sydney to work in the role and had two subjects left and I'd been told by the university that I could complete them in Sydney, and then I was told by an administrator that that was not possible, so I had to leave my job at the Guardian to go back to Melbourne to finish the masters, which was fine to do, and I kept doing other casual kind of jobs and you know contract roles. Well, I did that, but it meant leaving the Guardian, which was a bit disappointing. But it meant I got my masters, which was really critical because again, that was more of a springboard onwards. In fact, I, as part of my masters, I went to China and did a an intensive class in Shanghai, and from that, got offered a role in China, in Shanghai, with a with a Chinese media company that that produced content for for the very big expat community in Shanghai, and I was about to leave to go to Shanghai to take up the role, and you'll you'll probably will have a wry smile, which was February 2020, and fortunately, not long after that, everything kind of went pear-shaped with COVID, and so had to. I mean, it's sort of lucky in a way because Shanghai had a pretty awful time during COVID, where it was a very strict lockdown. So I probably dodged a bit of a COVID bullet in that regard, even though Australia had its own share of lockdowns. But yeah, so that sort of threw a bit of a spanner in the works of what looked like the next part of my media career. But then, of course, you know, I'm a I'm a fatalist. I I run with fate. I I don't push back against the things that sort of maybe look like negatives or or take us off our path. Paul Bugeja  36:38 And I just feel like it's another another fork in the path that takes us on a on a route that will hopefully get us to where we were meant to be, and not taking that role meant, of course, about a year later, I saw the job with Stuff, which is the New Zealand media company that I currently work for, and that was the middle of 2021. It was based in Auckland. We were still in the middle of COVID, but I applied anyway because why not? And yeah, they offered me the role pending the borders opening, effectively. And luckily for me, there was a two-week window where New Zealand and Australia thought things were going to go okay, and the borders opened, and I jumped on the first flight out and got myself to Auckland, and then I started my current job, or actually a different version of my current job with stuff. Michael Hingson  37:27 And what is your your current job? Paul Bugeja  37:30 So I am currently I create digital content for stuff for stuff digital, as we're called now. I mostly create trivia quizzes, so fun daily quizzes that we have a very very dedicated audience for. People love a quiz. I also create a word puzzle called the Hard Word, which is an anagram kind of puzzle. I create that every day. I create a news quiz for them. I also help manage the community, the online community that interacts with with us as another part of my role, which is the role that I originally went to New Zealand for, but as a full time gig, and now it's just sort of part of my my role. So yeah, I am a quizmaster. I love it. I had previously worked in television quiz shows during my time in Australia when I was juggling other stuff, so I had a bit of a background in in quiz question writing and quiz research and verifying, and so I'm now really in such a wonderful job. But I always like to be very clear about this to people because it sounds like the best job in the world. Wow, sitting and making cool quizzes every day-it's a really involved job, and it it takes a lot of kind of like time to research and put together these quizzes because you know you're trying to please a very broad audience of from you know 15 year olds to 75 year olds. So you know, it's it's a it's a very involved job, even if it's a fun job, and so it does, you know, it it does still have a very critical kind of like professional aspect to it, even though it sounds like to some of my friends and and people who learn about it the best job in the world. Michael Hingson  39:17 Well, I'm sure it's a great job, but it is a clearly a challenging job. Have you ever encountered people who talk to you about making your your quizzes or trying to work with staff to make quizzes and some of the things they do more accessible? So, like people who are blind can solve the quizzes or work the quizzes and use screen readers and so on to do the same things that others do. Paul Bugeja  39:45 Excellent point. So yeah, I feel quite often when I'm making my quizzes that clearly they are for an audience that can access them very easily. You know, as opposed to an audience that might need assistance to access. Them and you know we do the the the basic stuff as we you know you must you know um like you know putting an alt tag so that um you know people who maybe are but are able to to use to access the quiz as a as a an audio rather than a video rather than a written um quiz but you know, I think you're right. And look, to be fair, I think you know the way that the media is going. The media is going very video oriented now, anyway. I think, which is a brilliant thing for people who do need have some access, because you know, with the video, of course, a video quiz, there'll be audio as well as visual, as well as the written word potentially. So there's a way that covers off all the bases, you know, or you know, many of the bases anyway. At the moment, you know, we are starting to bring in some minor changes, but I think going forward, it's pretty critical because you know the world is very aware that people do have some limitations in the way that they can access, especially digital content, and even though there are a lot of great forms of software that you can use to to make like your your life less limited by whatever you know sort of limitation you may have, it still isn't as good as it can be. And and I think certainly as someone with a disability, I'm an advocate for disability. You know, I'm on the board of a major disability organization in Australia. I'm on an engagement advisory committee for the same organization. I'm very pro and very much an advocate for ensuring that anyone with any form of disability can access and have as as great a life as possible, as untrammeled. I'm not untrammeled. That's the wrong word. As as as you know, as a life that has no barricades to them, basically. Michael Hingson  41:49 Well, the the reality is that crossword puzzles, for example, can be made accessible. Yep. And of course, I wouldn't expect the organization to suddenly produce Braille puzzles, but there are there are still ways Speaker 2  42:11 to do it Michael Hingson  42:11 to create audio, for example, kinds of things. And you mentioned the the value of video that only works if people truly put the appropriate descriptions in in audio form, the video, which a lot of people don't do, which is unfortunate, but it is possible to make to make them more accessible than they are. Paul Bugeja  42:36 Yeah, but it is a but it is a it is Michael Hingson  42:38 a challenge, and I hope that over time more more kinds of things will be accessible. I get the New York Times online, and a lot of what they do isn't nearly as accessible as it should be, and I can see how it it could be made more Accessible, but they haven't just been really willing to do it. And and ironically, a lot of the media has been one of the places where access has has truly not been addressed nearly like it it should be. And and the the result of that is that there are problems, and of course they say, well, things change so fast. They they do, except that it's all about coding and it's all about understanding programming and coding. And if you do it right, and if you know it, you can keep up either way. But you know, people don't necessarily do that. Paul Bugeja  43:38 Yeah, look, I agree, and I think you know. Look, without I'm not going to become a defender of the media, even though I'm part of it. But I think they definitely can do better as a as an entire sort of profession. I think that the tricky thing for the media at the moment is, I mean, you look at what happened this week. You know, 300 reporters, you know, sacked at the Washington Post. You know the media is under a lot of pressure to be financial, and that's not a great defense against not being accessible, mind you. But their mind is on survival at the moment, and that's an unfortunate thing because it means that they can't do the stuff that would actually benefit everyone, you know, their entire audience. So, not to defend it, but that's that's the only sort of rationale I can think of as to why they're not doing more. But that shouldn't stop them trying. That shouldn't stop them trying. Michael Hingson  44:32 Well, and I think that's really the issue: is that people do need to try, and people need to make an effort. And if they would, it would help a lot more than than it does today. Paul Bugeja  44:43 Agreed. Michael Hingson  44:44 So, if you could change one thing about your life, what would it be? Paul Bugeja  44:47 Not very much. Like I really love my life. You know, I I I even and this will sound quite odd. I even probably wouldn't change having a disability. You know, like it it who I am. It's it's in my. You know, it's it's so it's in my DNA. Like you can't get any deeper into someone than their DNA. You know, like of course I'd rather not have this, but it's it it it doesn't as we've discussed. It doesn't stop me. It doesn't limit me. It just modifies my life on the edges. It's Michael Hingson  45:16 just it's just part of you. Paul Bugeja  45:18 That's exactly right. And so I have to embrace that. You know, as you know, does anyone with any sort of situation that is slightly left of you know what people might call you know normal or ordinary, you know? And I, I always say I try to live my life less ordinary, you know, and and I think it's that attitude which really stands me in good stead because when you choose like I like as we discussed earlier, I'm in a position where I can make different choices to people who do have a partner, or do have kids, or do have a massive mortgage, or do have whatever you know job that keeps them in one place. But you know, you know the old saying about you make your own luck, right? And circumstance does change things definitely, and some circumstances are outside of our control. For example, getting having a genetic disability is outside of my control, but you know you do make your own luck as well. And I sort of feel that I am so about agency, and I'm so about you know like taking responsibility for your actions that I feel that everything about my life is because of the choices that I've made, and I want to own that. So you know why would I want to change any of that? In terms of, if I want to change it, then I will change it. So I think I have a great life. I'm healthy. I'm happy. I've got a you know like I was saying earlier, I have great friends, a good family, a great job. I'm able to you know like talk to people like this about things and and and like it's yeah life's pretty life's pretty good for me. Um, you know, there are things about the world I'd like to change, like as would we all, you know, like, um, but those things we can only sort of change on the edges, and I do that as much as I can as well. So, well, there are things that we don't Michael Hingson  46:54 have control over, and and if we worry about them, that's just going to cause us grief. It's not going to bother others. Paul Bugeja  47:01 No, no worries. Worry. I mean, I worry about something. Of course, I do. We all do. But you know, eventually, I manage to bat most of my worries away because I realize, as you said, it's usually something that is out of my control. It's funny when I talk to my actor friends, and speaking for myself, of course, you know, actors have to rehearse. You know, we rehearse favorite. You know, you rehearse for roles and whatever, and that sometimes for me has meant that I tend to rehearse things prior to you know the situation. So it means that my mind goes at 100 miles an hour about a lot of things, and that can lead to anxiety and worry. You know because you overthink, you worry about a situation that hasn't even occurred yet. You're thinking, not over. Well, that's exactly right. That's exactly right. So, you know, I think the the biggest lesson I've probably taken as well from my diagnosis and and the the thing I committed to this year a little bit as a part of my New Year's resolution or whatever you want to call it is to just be as present as I can. You know, like to live in this moment right now. That doesn't mean I don't have an eye to the future, and and I don't make plans, and I don't am not excited about the future. But I'm I'm trying to be as present as I can because if you're present, then all then all this worry disappears in a way because you just can only deal with with with what's right in front of you. Michael Hingson  48:18 Right. Do you have any regrets? Paul Bugeja  48:22 Um, not really. I mean, you know, like there've been a few moments in my life. So, for example, I can I can name a few things. Like when I was in my early 30s, I entered the the diversity visa program, which is the green card lottery in America. Yeah, and I I got it. I got a green card, you know, and so I was all ready to move to the states back in the late 90. Oh no, when was it? Yeah, the late 90s. Yeah, yeah, um, early noughties, and I got into the writing editing course in Australia. So I was really enjoying that. I was doing some acting and some paid acting work, and so I had to. I had a moment where I was like, "Well, do I really want to take up this green card off and become a resident of America? I have lived there before when I studied. I travel there regularly to see my friends, you know. And so I had this crunch time. It was a sliding doors moment. I I did visit a few times. I spent a bit of time in the states, and then I eventually dropped the green card. Now, occasionally, I look back on that and think, "Was that a silly thing to do with what would have opened up to me had I moved to the states? You know, like would my acting career have taken off? Would I have ended up working for the New York Times? Look, whatever it is. So there's a sense of regret about it, but it's such a faint shade of regret that it doesn't it doesn't hold me back. You know, I don't want to be held back by anything in my life. And I think, for me, regrets can hold you back too much. You know, oh yeah, Michael Hingson  49:49 yeah. Oh, absolutely. Well, and and it seems to me that that it's one of those things that could have gone either way, as you said, a sliding door moment. I think that's a really interesting way to put it. But but the fact of the matter is, you made a choice. You're happy with the choice, and you may or may not have been as happy with the choice if you had moved to America. But you wouldn't have experienced a lot of the things that you have experienced. So it's okay. Paul Bugeja  50:14 That's exactly right. That's exactly right. So even you know occasional relationships that went awry, or you know what else? Gosh, what if I stay pursue my career as an actor? There are always going to be what ifs with life, you know, and it's the what ifs that tend to cause us regret. I think, and Michael Hingson  50:29 well, and and cause us so much fear. Paul Bugeja  50:32 That's exactly right. And regret and fear should be the same word, effectively, because that's all that's playing. And if you can find a way to manage that as best you can, and and look. I always say I try to to look down at my feet on the ground to see where I am, and to look forward to see where I'm going, rather than look back where I've come from. And look, we can learn a lot from where we've come from. And in fact, the book that I'm writing is almost like a detective novel, where I track back through my life to see if I can see moments where I might have known that I had FSHD much earlier, so in that regard, I do look backwards. You know, I'm happy to to to have a critical eye on the past and to learn from it. You know, but I don't ever want it to drag me back to it. I'm always looking to be pulled forward. Michael Hingson  51:18 Well, that's the operative part, right? There's nothing wrong with looking back and and learning from what you've experienced, and and more people should should do more of that. It seems to me, but Paul Bugeja  51:29 oh yeah, let's. That's a much longer conversation, isn't it? It Michael Hingson  51:32 is. Who's been the most most influential person in your life, and why? Paul Bugeja  51:38 Yep. Michael Hingson  51:40 Besides Kate Blanchett, but that's another yeah, Paul Bugeja  51:42 of course, very influential, Kate. If you're listening, if she is, I hope she'll Michael Hingson  51:47 reach out. I'd love to have her on the podcast. But anyway, you Paul Bugeja  51:50 never know, my friend. You never know. Look, I mean, it's it's a hard question because, but it's a good question. I mean, there have been so many influences in my life, you know, and and I don't want to step on toes by not naming people in a way, but you know, for one one really influential person who has given me, you know, I have a friend who's a film journalist actually, and has written, you know, a lot mostly about the production side of the industry rather than film reviews, and I feel she only came into my life about maybe 10 or 12 years ago. So she's a relatively new friend, but a very dear friend. And I think I did an internship at a magazine that she worked for, and she was the the editor of at the time, and I think she had a really great influence on my life because she made me realize that I definitely wanted to pursue a career in the media. That I was done with journalism. That working in the media was exciting and interesting. You know, she made sure she pushed me in a lot of ways that I might not have been pushed otherwise, and she's remained a really dear and constant president in my life ever since. So yeah, I really feel like her coming into my life at that particular moment really was like critical in a lot of ways. But you know, she was one of many that have that have definitely given me great advice, or have been very supportive, or have just been there for me. So, yeah, big call out to her. She's she was being wonderful. Michael Hingson  53:29 Do you think that if you had never been diagnosed with or ever had FSHD, that your your job and your careers would have gone differently, or do you think that this was just a natural progression and FSHD is there, but it didn't really dictate what you did. Paul Bugeja  53:46 I think because of my approach to this situation, which is it's there, but it's not going to stop me. I think that look clearly, it's a physical condition, so it does limit me a little bit physically. So, like, I was never going to be like for for instance even with acting you know it did limit me a little bit with acting like there were certain things that like I can't do a headstand you know and I know that's a really a small thing but like in in drama classes there was I remember one class particularly always asked to do a headstand and I couldn't do it and this was pre diagnosis and I had I just thought it was because I was clumsy or uncoordinated or not muscular enough, so like certainly the diagnosis probably gets in the way of some some some kinds of careers that I might have pursued. But generally, you know, I'm a I'm a computer based person. I'm a knowledge and and and and content based person, and I was already going that way pre-diagnosis, so you know I don't think it really intervened in where I would have gone, whether it helped me or not, or whether you know it was part of the reason why I'm where I am. Look, I think it's it's part of the reason of everything that I do. You know, even if it's not all. That the defining reason, but it's it's a consideration definitely. Michael Hingson  55:04 Well, it is, and and it's helped build your resilience, and there's nothing wrong with that. Paul Bugeja  55:10 Yep, and that's right. And I'm in a career that requires resilience, and so it definitely, in that regard, yes, it's it's helped me build that further resilience. Michael Hingson  55:18 So there you go. Has AI helped you in terms of any of the things that you do on your job? Do you use it to to help in finding out information about quizzes or or that you put in quizzes or any of that? Has AI been a useful tool for you? Paul Bugeja  55:35 So again, this we could talk about this for 12 hours a time. Topics right, especially working in the media. I am. I love the fact that I'm an early adopter. Right, I love technology. I I embrace it. I'm you know I'm that guy who gets the new iPhone not every year but every other year. You know, I I'm really I embrace the new. You know, I was doing digital content well the beginning like not at the beginning of it all but you know I was I was I jump in quickly with AI I have reservations I certainly you know I tend to still use standard search but of course now with Google search AI is built into that Google search so I am using it in that regard as a media organization, we have a very strict policy about AI, as one must. You know, we have to be very careful because while it's definitely the next big revolution for everyone, whoever you are, from you know like a dog walker to a you know president, like it's going to affect everyone's lives, you know. I feel as though, so you know, for example, as a media organization, we're encouraged. We are looking at improving the way we work with AI, but there always needs to be a human oversight. Yeah, Michael Hingson  56:57 absolutely. Paul Bugeja  56:58 Yep, yep. And you would appreciate that, of course. So I don't use it in the way I think. I I think over time I will have to use it because I won't have any choice. But you know, we in the media, I think we're looking at. I don't think this is giving anything away, but we're looking at agentic AI more than generative AI because agentic AI is really useful. If I can ask an AI bot to put together the the not the quiz itself, but the the actual article the quiz will appear in that goes on the site. Well, that's just a practical like role you've given a system if you had one anyway, right? So I definitely think the media and me in in my role will will more and more embrace agentic AI as we're able to build it into our systems to help us with mundane practical tasks that you'd give the intern, that you'd give the the first year journal student out or whatever. Right? In terms of generative AI, I I've used it a bit just to see what it will throw back at me, and for example, I do a lot of quizzes as a quizmaster because I love to just do quizzes. I can tell a quiz that's been made with AI. It's very clear. I did a quiz the other day, and I kid you not. The first question was, "If I'm a Bolivian, what country might I come from? Now, I mean, for an editor or the actual person who put together that quiz, not to realize that a that's a pretty awful quiz question, but but it's such an obviously AI generated quiz question, you know. So yeah, I think we I think, and I'm also very aware that the amount of money that's being poured into AI at the moment is looking like a big bubble that will burst at some point, you know, because they can't keep plowing all this money in and expect big returns because it's not returning anything at the moment to them. Really, that doesn't mean it's not going to continue. That doesn't mean that we shouldn't embrace it. That doesn't mean that it's not going to maybe find a cure for cancer. Like I feel like there is a lot of positive that can come from it, so long as the humans stay in control. Michael Hingson  59:03 Well, I think that's the the real issue in the operative part of it. I have used AI in in writing articles, and the way I've used AI is I've I've asked it to give me give me your thoughts on or write an article about, and I'll do that like about six or seven times, and I will go through all of the things that that are created, and it gives me ideas. But I would never let it write the article, and I I would never do that because I want it to be me. And even if it could get to the point where it truly emulates me, it's not me, and I wouldn't want to do that. I so I'm I'm with what you're saying. Paul Bugeja  59:44 Yeah, yeah, and I think that's the trick. My, I think probably like with all you know, sort of new ages of technology, whether it was just the internet, and then it was sort of probably social media was the next big you know sort of critical juncture, and now it's AI. You know, it it means that the a younger. Generation that comes along that only knows this. So my my probably biggest concern would be, and I don't have children, but you know for my friends' children and the children that are going to grow up with AI, that they come to rely on it so heavily that they lose the ability to critically think, that they that they believe everything that AI says, and it will get better and it will get more accurate, but it's still throwing back. So I'll give you one quick example. When I was playing around with it back in 2022, I think, or whatever year the Queen died, Queen Elizabeth II died. I asked it, "Who's the current monarch of England? And I kept bringing Queen Elizabeth II back, and I kept arguing with it, and it kept saying no, and I started feeding it New York Times articles, Guardian articles, you know the Telegraph articles, and I kept saying these aren't reliable sources. Now this was you know back three or four years ago now, but that really concerned me, and I fear that that's the only fear for me is that people will lose their curiosity and their own ability to critically think and and and rely on it so heavily that they forget how to do really simple tasks that we should still be able to do. Michael Hingson  1:01:04 If you could change one thing about the world, whether it's big or small or whatever, what would Paul Bugeja  1:01:10 it be? I actually, so this will reveal me as a like a bit of a almost a communist. But I wish that people's obsession with money would change. I would love to change that. Like I love that people want to be comfortable and they want good lives and that we want our creature comforts and that we want to travel and have a great TV and all that somewhere to live. But I do feel li

"It's not who I am underneath, but what I do that defines me." We celebrate World FSHD Day with those that are making a difference in the world (and our fathers -- Happy Father's Day!) and then discuss what we would like to hear from the FSHD clinical trial companies at the upcoming FSHD International Research Congress.

Good morning from Pharma Daily: the podcast that brings you the most important developments in the pharmaceutical and biotech world. Today, we'll explore a series of pivotal advancements and challenges shaping the industry landscape—ranging from scientific breakthroughs to regulatory maneuvers, all underscoring the sector's dynamic evolution. Novartis has made headlines with its investigational drug, Delpacibart Braxlosiran, which successfully met primary endpoints in a Phase 1/2 trial for treating Facioscapulohumeral Muscular Dystrophy (FSHD). This RNA therapy utilizes an antibody-oligonucleotide conjugate to target the DUX4 gene, a significant cause of FSHD. The promising results not only mark a potential therapeutic breakthrough for this debilitating neuromuscular disease but also highlight Novartis' commitment to innovative treatments in rare diseases. In parallel, Enliven Therapeutics has reported positive outcomes from a Phase 1 trial of ELVN-001 for patients with Chronic Myeloid Leukemia (CML), who are heavily pretreated. This small molecule tyrosine kinase inhibitor shows improved efficacy, offering hope for those who have exhausted existing treatment options. As ELVN-001 progresses into later-stage trials, it may significantly enhance therapeutic options and outcomes for CML patients. Regulatory activities remain at the forefront, exemplified by Amgen's engagement with the Duke Clinical Research Institute to defend Tavneos amid an FDA push for market withdrawal. This illustrates the intricate complexity of regulatory processes and the importance of evidence-based advocacy in preserving access to critical therapies. In another regulatory development, Guardant Health's Guardant360 CDx has received FDA approval as a companion diagnostic for Boehringer Ingelheim's Hernexeos targeting HER2-mutant non-small cell lung cancer. The approval emphasizes the growing significance of liquid biopsy technologies in personalized oncology care, offering precise and less invasive diagnostic solutions. In business development news, strategic collaborations are gaining momentum. Simcere Pharmaceutical has partnered with Stanford Medicine to develop first-in-class therapies for Idiopathic Pulmonary Fibrosis. Meanwhile, Ildong Pharmaceutical and Welt are joining forces to create AI-driven digital therapeutics. These alliances reflect an increasing trend towards integrating cutting-edge technology and cross-disciplinary expertise to accelerate drug discovery and development. Funding dynamics within the sector are evolving, as seen with Neion Bio's successful Series A fundraising of $23 million aimed at enhancing its biologics manufacturing platform. Similarly, Human Continuum secured $5.13 million to advance its exosome-based regenerative medicine platform. These investments underscore a strong focus on innovative platform technologies promising to transform therapeutic modalities and manufacturing processes. Not all news is positive, however; Jazz Pharmaceuticals and PharmaMar faced setbacks as their Phase 3 trial for Zepzelca (Lurbinectedin) failed to meet its overall survival endpoint in metastatic small cell lung cancer. This highlights the inherent challenges in oncology drug development and underscores the need for continuous innovation. Regulatory hurdles persist as well, evidenced by Camurus receiving a second complete response letter from the FDA regarding Oclaiz (Octreotide) due to manufacturing concerns. The industry is also navigating cybersecurity challenges, as seen with Novo Nordisk's recent data breach incident. This breach underscores vulnerabilities within biopharma companies concerning intellectual property and patient data protection. It serves as a stark reminder of the necessity for robust cybersecurity measures to safeguard sensitive information critical to clinical trials and corporate integrity. Meanwhile, strategic planning remains essential as Astellas confronts a looming $6 billion patent cliff with Xtandi, its prostate cancer drug. The company's five-year strategy focuses on cost savings while sustaining innovation and competitiveness amidst impending revenue declines. The biotechnology sector continues to thrive amidst these challenges, evidenced by record levels of initial public offerings (IPOs). Despite broader economic uncertainties, investor confidence remains robust, highlighting biotech's potential for groundbreaking advancements and lucrative returns. Finally, artificial intelligence is making significant strides across health agencies, with a reported 148% increase at the FDA by 2025 alone. This surge in AI integration highlights its transformative potential in regulatory processes and healthcare delivery—offering opportunities to enhance efficiency and decision-making within the sector. In summary, today's developments encapsulate the vibrant pharmaceutical and biotech industries characterized by scientific innovation, regulatory intricacies, strategic collaborations, and financial maneuvers. These advancements offer new hope for patients while navigating complex landscapes that demand continuous innovation and compliance—a balance that defines success in this ever-evolving sector.Support the show

On this week's episode, Graig Suvannavejh, Eric Schmidt, Paul Matteis and Financial Times' Oliver Barnes kicked off with the biotech market, with the XBI in positive territory and 12 biotech IPOs completed so far this year. They expected the IPO window to remain open for high-quality private companies. The group also overviewed recent financings, including SonoThera's $125 million Series B, City Therapeutics' $100 million Series B, Ethyreal's $101 million Series A, and Summit's decision to cancel a $500 million secondary offering. In data news, the co-hosts covered Tango's combination data with Revolution Medicines' RAS inhibitor. They also discussed Incyte's acquisition of Vega Therapeutics as a pipeline-building move ahead of Jakafi's 2028 patent expiration and J&J's acquisition of Firefly, with the RAS inhibitor space expected to remain hot. The group also discussed GSK's acquisition of Nuvalent -- its largest deal to date -- for two late-stage lung cancer assets. Oliver added perspective on biotech deal leaks, following the Incyte/Vega deal and GSK/Nuvalent deals this week. In partnership updates, Novartis expanded its molecular glue work with Orionis, Lilly licensed an Alzheimer's candidate from AlzeCure, and Corvus supported China partner Angel Pharmaceuticals. The episode concluded with the latest in rare disease and gene therapy, covering Novartis' FSHD program, FDA flexibility, Rett syndrome programs, and Sensorion's exit from hearing loss development. *This episode aired on June 12, 2026. 

"I think the question we should be asking is, do you believe in this thing or not?" We discuss the value of MRI-informed muscle biopsies compared with uninformed biopsies, how we go about interpreting FSHD clinical trial gene expression data, and after the song, we show the Jones Lab CRISPRi presentation from the ASGCT annual meeting in Boston.

"I'm not bad. I'm just drawn that way." Today we finish up some questions on clinical trials, therapeutics, what may be in the future, and other random FSHD topics. Good times :)

This week we dive into the Beyond Biotech archive to bring you a discussion with Dr Stanley Qi, the founder of Epicrispr.Epicrispr is an epigenetic editing company, leveraging the power of CRISPR without cutting DNA. The company's proprietary Gene Expression Modulation System (GEMS) includes the smallest Cas protein known to work in human cells, enabling in vivo or ex vivo delivery via a single viral vector. In this episode we discuss epigenetic editing, why it's reversible, and how it can treat FSHD and other conditions. 01:43 Meet Stanley Qi03:32 Founding Epicrispr05:53 CRISPR interference and epigenome explained10:04 Overview of GEMS gene modulation system11:28 Reversibility and safety of epigenetic edits18:42 Strategy for tackling multiple disease conditions23:27 Clinical trial plans for EPI-321 candidate30:06 Looking forwardThis episode is brought to you with the support of MedChemExpress.Interested in being a sponsor of an episode of our podcast? Discover how you can get involved here! Stay updated by subscribing to our newsletterTo dive deeper into the topic: Could CRISPR really cure these diseases?10 gene therapy companies you should know aboutCRISPR technology's next wave: Ten companies to watch

"Blue Horseshoe loves Anacott Steel." Today we cover recent clinical trial news in the FSHD space and delve a bit deeper into some topics from part 1 of our Reddit Q&A. **Updated version**The lowlight was Roche canceling their trial. The highlight was Sarepta's announcement of preliminary clinical data. Getting siRNAs, ASOs, and viruses into liver is easy because liver is filled with leaky capillaries, however, muscle is poorly vascularized and blood vessels have tight junctions so targeting cell receptors for enhanced transcytosis greatly enhances skeletal muscle delivery. Sarepta's targeting of the alpha v beta 6 integrin is a great advance in delivery of siRNA against DUX4 and, as predicted, shows the best DUX4 knockdown we have seen so far.

"So, Mr Tipton, how could it take you five minutes to cook your grits when it takes the entire grit-eating world twenty minutes?" We discuss the initial Epicrispr Biotech press release pertaining to their EPI-321 phase 1/2 clinical trial and the big picture science behind the RESTEM phase 1/2 clinical trial in progress and the Scholar Rock upcoming phase 2 clinical trial.

The 2025 Medical Innovation Olympics featured one of the most memorable and personal interviews with Amber Salzman, CEO at Epicrispr Biotechnologies, an extraordinary leader with unparalleled sense of purpose, urgency, PhD in mathematics and illustrious track record of success as a pharmaceutical industry executive with over 30 years of experience that included growing revenue, shareholder value, and accelerating innovative treatments. She began her career leading R & D at GSK with a clinical pipeline responsibility for $1.25 billion, prior to serving as CEO at Cardiokine, CEO at Avalanche, co-founder of Annapurna, SAS, CEO of Adverum, Ohana Biosciences. She currently serves on the Osler Diagnostics (UK) and AviadoBio (UK) Boards. In addition to advocating for patients living with rare diseases, Dr. Salzman leads the Stop ALD Foundation, a non-profit medical research foundation focused on developing.In this interview Amber speaks about her personal and family's struggle with neurodegenerative rare diseases and the critical new discoveries in gene regulation to switch genes on and off rather than cut DNA which she has guided and accelerated with the support of an extraordinary team of Nobel Prize laureates and scientists at Epicrispr. 0:00 - Highlight 1 - Amber's Family's Personal Struggle with Rare Neurodegenerative Disease1:02 - Highlight 2 - Patient's Real-World Story from the 9/11 tragedy2:31 - Highlight 3 - Vision & Stamina Needed to Address Unpredictability of Human Biology 4:03 - Speaker Introduction7:19 - Keys to Transition from R & D to CEO/Commercial Leader10:22 - Approach to decision-making as a leader with urgency & purpose14:00 - Epigenetic Editing and How it is different from CRISPR16:36 - Challenges on the journey to Epicrispr's discovery18:14 - Second challenge - finding a gene modulator with which to fuse it 18:49 - Patients vary significantly in how they express their symptoms19:52 - Springbuck Analytics Partnership - Whole Body Imaging21:14 - Recent disappointments from Sarepta in Duchenne's muscular dystrophy25:48 - How Amber's personal family experiences with Genetic Diseases impacted her leadership journey29:47 - When could FSHD patients finally access this new treatment?31:27 - What other disease conditions is Epicrispr considering in its development program?33:27 - Amber's Lessons: Stay focused on patients, learn, and co-develop treatments together

Facioscapulohumeral muscular dystrophy (FSHD) is one of the most common forms of muscular dystrophy, affecting individuals across the lifespan with variable severity. Advances in genetic understanding and therapeutic development have led to an era of promising disease-modifying strategies. In this episode, Katie Grouse, MD FAAN, speaks with Renatta N. Knox, MD, PhD, author of the article “Facioscapulohumeral Muscular Dystrophy” in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California San Francisco in San Francisco, California. Dr. Knox is an assistant professor of neurology in the Division of Pediatric Neurology and Neuromuscular Section at Washington University School of Medicine in St. Louis, Missouri. Additional Resources Read the article: Facioscapulohumeral Muscular Dystrophy Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Grouse: This is Dr Katie Grouse. Today I'm interviewing Dr Renatta Knox about her article on fascioscapulohumeral muscular dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Welcome to the podcast, and please introduce yourself to our audience. Dr Knox: Hi Katie, thank you so much for the invitation for the audio interview. I'm looking forward to our conversation. As she mentioned, my name is Renata Knox. It's a pleasure to be here today. Dr Grouse: I'd like to start by asking, what is the key message that you hope your readers will take from your article? Dr Knox: I would say two things. The first is an appreciation and understanding of the unique genetic mechanism that leads to FSHD. And the second is the really exciting therapy landscape that we find ourselves in. So, we're hopeful that there will actually be disease-modifying therapies for FSHD soon. Dr Grouse: We're really looking forward to learning more about that. Now, before we get to that piece, could you just remind us of the clinical manifestations and features that are specific to FSHD? Dr Knox: So, one of the most unique things about FSHD that we see clinically is the pattern of weakness. So, one of the first features is that it's asymmetric. And then there are certain muscle groups that typically are affected, and that's partly where the name comes from. So, we see effects in the face, the limbs, the trunk; and so, those are some of the unique features that we see clinically. Dr Grouse: I'd love it if you could walk us through how you approach diagnosing a patient who presents with proximal weakness where FSHD is in your differential. Dr Knox: Yeah, it's a really great question. So, I would say it depends. So, I actually focus on FSHD in my clinical practice. So, many times patients are referred to me because there's a very high suspicion or there's a known family history of FSHD. So, that's one category of cases. I would say the other category of case is where it's, as you said, maybe more proximal weakness more broadly. Someone that's before me who has a known family history, they really have some of the characteristic physical features---which I'm pretty attuned to, as this is, you know, part of my subspecialty---I'll actually go directly to FSHD genetic testing. And that is one of the unique features of this disease, that the next-generation sequencing panels that are typically used for some of our other muscle diseases, FSHD is not captured on those. So, we actually have to send targeted testing for FSHD to diagnose it. So, that is one category where, again, I have a very high suspicion either based on their clinical presentation and/or a known family history, then I will actually go directly to FSHD-targeted genetic testing. In the second case, where it is one of the conditions that I'm considering among others, I will do more broad testing. So, I will get a CK level to see if there's evidence of muscle breakdown. I'll likely also do one of the next-generation sequencing panels that we have access to, which will allow us to identify, potentially, one to two hundred potential muscle diseases. And then again, if FSHD is higher on my differential in that second group of patients, then I will also send targeted FSHD-specific testing. Dr Grouse: That's really helpful. And I'm wondering if you have any thoughts about common pitfalls that you've seen when providers are trying to work this up? Dr Knox: I don't know if I would say pitfalls. I think I would acknowledge that it's challenging. My subspecialty training in neuromuscular medicine and also gene therapy. And so FSHD is pretty high on my radar. But I would say in neurology in general---and then, you know, the general medical population---,it really isn't something that many people are seeing. So, I would say what patients will communicate to us sometimes is some frustration that maybe it took time to make the diagnosis, but I just have a deep understanding that it's not something that is on many people's radars. And I think, again, it's tricky because it's not picked up on these next-generation sequencing panels, which many of us can send pretty easily. It will be missed. And I will say the biggest pitfall is, again, if you're not thinking about it and you don't send that testing, you actually- it's very difficult to diagnose it. Dr Grouse: Thank you so much for highlighting that. I think there are many people who are not aware that those different panels really aren't picking that up and that they have to test specifically. So, I think that's a great thing for all of us to keep in mind. Are there any tips or tricks to the diagnosis, other than the genetic issues that you mentioned, that sometimes can really bring this diagnosis to the forefront? Dr Knox: I think things that really tip me off to having a higher suspicion for FSHD is facial weakness that we can detect on our exam. Scapular winging---again, there's a small subset of disorders which can impact that. Someone who's presenting with foot drop, you know, with facial weakness, I think definitely about FSHD more. Also, clinically, kind of the presentation or things that they're beginning to have difficulty with is a tip-off. So, if someone is an athlete, like, they're a volleyball player or basketball player and they say, oh, I'm having difficulties, you know, with movements that require them to elevate their arm, which can be a sign of the shoulder weakness that we classically see. Or someone who says, oh, I'm having a harder time shampooing my hair or combing my hair. So those can be tip-offs again, which are basically referencing the type of weakness that they have. Another feature of FSHD which isn't necessarily as broadly appreciated is that pain and fatigue are very common. So, if someone is coming in and saying, actually, I also have a significant amount of fatigue as well or a lot of pain, that's something that can tip me off to it. Hearing loss is something that we can also see in up to 20% of patients with FSHD. So, if they are having those symptoms or saying they're ringing in their ears, these are some things that will make me begin to think about it more. Dr Grouse: Oh, really helpful. I also found it really fascinating reading some of the very FSHD-specific clinical signs, some interesting- some diagrams and pictures as well, that are very specific to the pattern of weakness that develops in FSHD. So, I encourage our listeners to check that out. But are there any highlights from those little clinical pearls that you'd like to point out? Dr Knox: I think the poly-hill sign---so, these are these literal hills that we can see in the shoulders of patients with FSHD---is pretty classic. Popeye arms, which is this older term that we still use that has to do with which muscle groups are preserved versus those that have atrophy. So that's a common feature. And then I would say, really, the asymmetry is something that is a unique feature in FSHD. And again, we did our best to provide good representative images. So again, as you mentioned, Katie, I would really encourage people to look at those images and then think about cases that they may have seen and how similar they are so they can begin to recognize those signs as well. Dr Grouse: Now going back to the genetic topic, the complex genetic underpinnings of FSHD are really well-explained in your article; and again, worth taking a look at to remind ourselves of everything that's of that pathology. Now, I was wondering though, if you could give us a brief overview of how we should approach genetic testing in a suspected case of FSHD? You mentioned some specific panels, but it does sound like there's some more complexity to it as well. Dr Knox: Yes, and I'll just kind of briefly explain that complexity. Part of the thing that we're detecting in the genetic testing is the repeat number. And so, we're actually looking for a contraction in a repeat number. So, not an expansion, which were typical for some of the diseases that we think about, the trinucleotide repeat disorders. And this is why it's not captured in the next-generation sequencing panels, because they do not currently have the ability to do that. And so, again, what the type of testing that I do really depends on my suspicion. So again, if my suspicion is very high for FSHD---they have a family history, they have the classic features---then I will actually go directly to an FSHD-specific testing, which is available from various sources. If, again, it's among different things that I'm thinking about, I will get a CK lab. I typically will also send a next-generation sequencing panel specific for muscle diseases, perhaps muscular dystrophy; again, depending on what I'm thinking about. And then I will also send in a specific FSHD genetic test as well. People are beginning to use whole-genome sequencing, which is capturing some of our true nucleotide repeat disorders and becoming more comprehensive. So, my hope is that as that becomes more standard of care---like, whole-exome sequencing can be gotten pretty routinely now---that it may be easier for us to make some of these diagnoses. Dr Grouse: Well, that's really helpful, and thanks for that overview. Now another thing that you mentioned that I thought was really interesting in your article was that patients with, you know, history of FSHD, perhaps in the family, who are pregnant and want to screen for this disease would not be able to use sort of the more common screening tests like cell-free DNA testing and may have to go to other means to do that. What is generally their route to this type of testing? Dr Knox: Yeah, great question, and really important question for family planning purposes, and it definitely comes up in clinical practice. And so again, because of the unique genetics of FSHD, you actually have to do invasive genetic testing currently to be able to test it. And so that's, you know, amnio or chorio, and then send it to a lab that can perform, again, FSHD-specific testing on the samples that are presented. And there are obviously labs that are capable of doing that and centers that are capable of doing that, but it is not picked up on the cell-free DNA panels that are being very routinely used. You or your provider has to be thinking about it to send that specific testing, similar to our patients that come into clinic and have not yet been diagnosed. Dr Grouse: Once you have the diagnosis, what are our options for therapy? I think it sounds like at this current time, it looks to be mostly supportive. What are some of the supportive care options we should keep in mind? Dr Knox: Yes, so that is definitely accurate. Care today is supportive, but again, we're very excited about the clinical trial and therapy landscape for FSHD. So, I work very closely with my physical therapy colleagues that are in clinic with me. So, we work very closely with physical and occupational therapists to help with supportive measures, adaptive measures, doing assessments, helping our patients to be able to move and exercise safely and effectively. As I mentioned, pain is very common in FSHD and so we can treat that with medications. The most common medication that we use to treat for pain in FSHD are NSAIDs. And then other than that it's really, you know, supportive measures. Do they need to see other subspecialists? There are some surgical options. Those are used very rarely to help with some of the scapular weakness, but typically it's physical therapy, occupational therapy, supportive devices. We treat the pain as we're able to, and then we work with other subspecialists to screen, monitor and support our patients to the best of our ability. Dr Grouse: Well, without further ado, I'd love to hear more about what's coming down the pipeline in clinical trials. What can we look forward to seeing, hopefully, in future years to treat these patients? Dr Knox: Yes. And so, this is actually what got me interested in the neuromuscle space in general is that, because we now for many years have known the genetic cause of many of these disorders as well as some of the underlying mechanisms, we can actually use advances in therapeutics to do what we call targeted therapies. So, rather than treating symptoms or indirect methods or doing kind of broad drug screens---which, again, still do take place and still do have their place---we actually can target mechanisms directly. And so, we know that the underlying biology of FSHD is due to this protein called DUX4 being expressed when it should not be. So, it's what we call a toxic gain of function. And so, the targeted way to address this is to suppress DUX4 expression. And so, kind of broadly speaking, what we're really excited about are a couple of products that are currently in clinical trials right now that actually caused DUX4 suppression to be suppressed. And again, these are targeted pathways. And so, again, the hope is that by doing that, we can hopefully slow the progression of the disease, potentially stop progression of the disease, and potentially reverse. Again, we don't know if that might be possible, but that is one of the hopes. Dr Grouse: Well, that's really exciting, and I know we're all looking forward to more coming down the pipeline soon, and hopefully more things that can really offer some exciting treatments for our patients with this condition. Now, a little more deep-dive into our patients who are diagnosed. You've reviewed some of the treatments currently available and hopefully may someday soon be available. Are there other things that we should be keeping in mind in this population? For instance, screenings that we should be doing for other extramuscular manifestations that we need to be thinking about? Dr Knox: I will answer that question two ways. I think something that's very important to acknowledge is the impact that these diagnoses and these conditions have on our patient practically, psychologically. One of the other unique features of FSHD is, it's autosomal-dominant. So, if it is in a family, you can have many family members who are affected, but the variability is very high. And so, you can have in the same family someone who is wheelchair-dependent, and someone else in the family with the same underlying genetics who has no signs or symptoms or is very mildly affected. And that is something that is definitely challenging for our families and patients to navigate if they're very different than their family members with the same condition. And just navigating the world with a condition that, you know, can be physically debilitating and cause changes to what they're able to do or not able to do, progression is something that's very difficult to handle. So, I think that's one set of things. And we try our best, you know, with my team and my other colleagues in the space, to support our families and patients in the best way that we can. Secondly, there is very important screening that needs to be done for this condition. So, one of the things- and the current guidelines which are actually being updated, the last update was in 2015 is all patients that undergo pulmonary function testing or PFTs. And so that's something we do at baseline and we do at least annually in my practice. Young kids who are presenting very early or patients with certain genetics that we know are more predisposed to extra muscular manifestations, we recommend screening for hearing, which is one of the manifestations, and ophthalmologic exam to look for retinovascular changes, which is one of the manifestations as well. Those are the more common ones that are typically done. There's also some evidence in pediatric patients with very severe manifestations that there may be some cognitive impacts, learning impacts. And so, that is something we're also thinking about screening and supporting our patients in that way. And again, we typically work with these patients in a multidisciplinary team depending on what manifestations and the degrees to which they're impacted by the disorder. Dr Grouse: Thank you so much for that answer. I think a lot of us forget sometimes when we get really focused on what can we do now, that we forget to kind of stop and reflect on sort of the more holistic approach. How is this affecting the patient? How is this affecting the patient's family dynamic, and what other ways are they going through life with this condition that we need to be thinking about? So, I appreciate you bringing that up. I wanted to ask, sort of based on what you're talking about and what you mentioned already, you happened to mention that what initially drew you that to this work was your interest in some of the really exciting breakthroughs in the field. Well, was there anything else that drew you to, specifically, congenital neuromuscular diseases, and FSHD in particular? Dr Knox: I'm a physician scientist by training, and so I would describe myself also as a molecular biologist. So, I love getting into the nitty gritties of disease mechanisms, what genes are doing in bodies, how they function. And so, as I mentioned earlier, in the neuromuscle space, we've known for many years the genetic cause of many of these disorders and have done great, you know, mechanistic work to kind of define why we see the disease. And then now we're at this intersection of that knowledge marrying with these really novel therapeutic approaches, gene therapy approaches, being able to intersect and then in very creative ways actually target diseases very directly. And so, I would say it really is the combination of those two things. FSHD has a really fascinating unique biology, which again, we encourage everyone to read about more in the article. That really drew me to it. I'm very interested in gene regulation, transcription. This is one of the underlying mechanisms that is gone awry in the disorder, and then that being married to advances in therapeutics. So, you could wed those two pieces of information and actually meaningfully impact patient 's lives. And again, that's the real privilege and honor to witness is how these therapies can transform lives. And I saw it happened with this one case for this one disorder when I was a resident where there was no treatment. Young children, unfortunately, would not survive the disease. And then I saw the therapy come be in development and literally change the trajectory. And this is what we're very hopeful for in the FSHD space, that wedding, this wonderful basic science research, translational research, companies working together to develop these therapies that can transform lives. It is just so beautiful to witness and see, and it's something that I get to do. You know, it's a part of my job, so it's a real privilege. Dr Grouse: Well, I have to say, it's really inspiring hearing you talk about it. And I imagine that many neurologists-in-training who are listening to this may be inspired as well and may be convinced to go into this field for that very reason. So, thank you so much for sharing all of this information with us today. I learned a lot, and I think all of our listeners have too. Dr Knox: Thank you. It's really been a pleasure. Dr Grouse: Again, today I've been interviewing Dr Renatta Knox about her article on fascioscapulohumeral muscular dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

While genetic testing has replaced muscle biopsy in the diagnosis of many genetic myopathies, clinical assessment and the integration of clinical and laboratory findings remain key elements for the diagnosis and treatment of muscle diseases. In this episode, Casey Albin, MD, speaks with Margherita Milone, MD, PhD, FAAN, FANA, author of the article “A Pattern Recognition Approach to Myopathy” in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Albin is a Continuum® Audio interviewer, associate editor of media engagement, and an assistant professor of neurology and neurosurgery at Emory University School of Medicine in Atlanta, Georgia. Dr. Milone is a professor of neurology and the director of the Muscle Pathology Laboratory at Mayo Clinic College of Medicine and Science in Rochester, Minnesota. Additional Resources Read the article: A Pattern Recognition Approach to Myopathy Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @caseyalbin Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Albin: Hello, this is Dr Casey Albin. Today I'm interviewing Dr Margherita Milone on her article on a pattern recognition approach to myopathy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Welcome to the podcast, Dr Milone. Thank you so much for joining us. I'll start off by having you introduce yourself to our listeners. Dr Milone: Hello Casey, thank you so much for this interview and for bringing the attention to the article on muscle diseases. So, I'm Margherita Milone. I'm one of the neuromuscular neurologists at Mayo Clinic in Rochester. I have been interested in muscle disorders since I was a neurology resident many years ago. Muscle diseases are the focus of my clinical practice and research interest. Dr Albin: Wonderful. Thank you so much. When I think about myopathies, I generally tend to think of three large buckets: the genetic myopathy, the inflammatory myopathies, and then the necrotizing myopathies. Is that a reasonable approach to conceptualizing these myopathies? Dr Milone: Yeah, the ideology of the myopathies can be quite broad. And yes, we have a large group of genetic muscle diseases, which are the most common. And then we have immune-mediated muscle diseases, which include inflammatory myopathies as well as some form of necrotizing myopathies. Then we have some metabolic myopathies, which could be acquired or could be genetic. And then there are muscle diseases that are due to toxins as well as to infection. Dr Albin: Wow. So, lots of different etiologies. And that really struck me about your article, is that these can present in really heterogeneous ways, and some of them don't really read the rule book. So, we have to have a really high level of suspicion, for someone who's coming in with weakness, to remember to think about a myopathy. One of the things that I like to do is try to take us through a little bit of a case to sort of walk us through how you would approach if someone comes in. So, let's say you get, you know, a forty-year-old woman, and she's presenting with several months of progressive weakness. And she says that even recently she's noted just a little bit of difficulty swallowing. It feels to her like things are getting stuck. What are some of the things when you are approaching the history that would help you tease this to a myopathy instead of so many other things that can cause a patient to be weak? Dr Milone: Yes. So, as you mentioned, people who have a muscle disease have the muscle weakness often, but the muscle weakness is not just specific for a muscle disease. Because you can have a mass weakness in somebody who has a neurogenic paralysis. The problem with diagnosis of muscle diseases is that patients with these disorders have a limited number of symptom and sign that does not match the large heterogeneity of the etiology. So, in someone who has weakness, that weakness could represent a muscle disease, could represent an anterior horn cell disease, could represent a defect of neuromuscular junction. The clinical history of weakness is not sufficient by itself to make you think about a muscle disease. You have to keep that in the differential diagnosis. But your examination will help in corroborating your suspicion of a muscle disease. Let's say if you have a patient, the patient that you described, with six months' history of progressive weakness, dysphagia, and that patient has normal reflexes, and the patient has no clinical evidence for muscle fatigability and no sensory loss, then the probability that that patient has a myopathy increases. Dr Albin: Ah, that's really helpful. I'm hearing a lot of it is actually the lack of other findings. In some ways it's asking, you know, have you experienced numbness and tingling? And if not, that's sort of eliminating that this might not be a neuropathy problem. And then again, that fatigability- obviously fatigability is not specific to a neuromuscular junction, but knowing that is a hallmark of myasthenia, the most common of neuromuscular disorders. Getting that off the table helps you say, okay, well, it's not a neuromuscular junction problem, perhaps. Now we have to think more about, is this a muscle problem itself? Are there any patterns that the patients describe? I have difficulty getting up from a chair, or I have difficulty brushing my hair. When I think of myopathies, I historically have thought of, sort of, more proximal weakness. Is that always true, or not so much? Dr Milone: Yeah. So, there are muscle diseases that involve predominantly proximal weakness. For example, the patient you mentioned earlier could have, for example, an autoimmune muscle disease, a necrotizing autoimmune myopathy; could have, perhaps, dermatomyositis if there are skin changes. But a patient with muscle disease can also present with a different pattern of weakness. So, myopathies can lead to this weakness, and foot drop myopathies can cause- can manifest with the weakness of the calf muscles. So, you may have a patient presenting to the clinic who has no the inability to stand on tiptoes, or you may have a patient who has just facial weakness, who has noted the difficulty sealing their lips on the glasses when they drink and experiencing some drooling in that setting, plus some hand weakness. So, the muscle involved in muscle diseases can vary depending on the underlying cause of the muscle disease. Dr Albin: That's really helpful. So, it really is really keeping an open mind and looking for some supporting features, whether it's bulbar involvement, extraocular eye muscle involvement; looking, you know, is it proximal, is it distal? And then remembering that any of those patterns can also be a muscle problem, even if sometimes we think of distal being more neuropathy and proximal myopathy. Really, there's a host of ranges for this. I really took that away from your article. This is, unfortunately, not just a neat way to box these. We really have to have that broad differential. Let me ask another question about your history. How often do you find that patients complain of, sort of, muscular cramping or muscle pain? And does that help you in terms of deciding what type of myopathy they may have? Dr Milone: Many patients with muscle disease have muscle pain. The muscle pain could signal a presence of inflammation in skeletal muscle, could be the result of overuse from a muscle that is not functioning normally. People who have myotonia experience muscle stiffness and muscle pain. Patients who have a metabolic myopathy usually have exercise-induced muscle pain. But, as we know, muscle pain is also very nonspecific, so we have to try to find out from the patient in what setting the pain specifically occurs. Dr Albin: That's really helpful. So, it's asking a little bit more details about the type of cramping that they have, the type of pain they may be experiencing, to help you refine that differential. Similarly, one of the things that I historically have always associated with myopathies is an elevation in the CK, or the creatinine kinase. How sensitive and specific is that, and how do you as the expert sort of take into account, you know, what their CK may be? Dr Milone: So, this is a very good point. And the elevation of creatine kinase can provide a clue that the patient has a muscle disease, but it is nonspecific for muscle disease because we know that elevation of creatine kinase can occur in the setting of a neurogenic process. For example, we can see elevation of the creatine kinase in patients who have ALS or in patients who have spinal muscular atrophy. And in these patients---for example, those with spinal muscular atrophy---the CK elevation can be also of significantly elevated up to a couple of thousand. Conversely, we can have muscle diseases where the CK elevation does not occur. Examples of these are some genetic muscle disease, but also some acquired muscle diseases. If we think of, for example, cases where inflammation in the muscle occurs in between muscle fibers, more in the interstitium of the muscle, that disease may not lead to significant elevation of the CK. Dr Albin: That's super helpful. So, I'm hearing you say CK may be helpful, but it's neither completely sensitive nor completely specific when we're thinking about myopathic disorders. Dr Milone: You are correct. Dr Albin: Great. So, coming back to our patients, you know, she says that she has this dysphasia. How do bulbar involvement or extraocular eye movement involvement, how do those help narrow your differential? And what sort of disorders are you thinking of for patients who may have that bulbar or extraocular muscle involvement? Dr Milone: Regarding dysphagia, that can occur in the setting of acquired myopathies relatively frequent; for example, in inclusion body myositis or in other forms of inflammatory myopathy. Your patient, I believe, was in their forties, so it's a little bit too young for inclusion body myositis. Involvement of the extraocular muscles is usually much more common in genetic muscle diseases and much less frequent in hereditary muscle disease. So, if there is involvement of the extraocular muscles, and if there is a dysphagia, and if there is a proximal weakness, you may think about oculopharyngeal muscular dystrophy, for example. But obviously, in a patient who has only six months of history, we have to pay attention of the degree of weakness the patient has developed since the symptom onset. Because if the degree of weakness is mild, yes, it could still be a genetic or could be an acquired disease. But if we have a patient who, in six months, from being normal became unable to climb stairs, then we worry much more about an acquired muscle disease. Dr Albin: That's really helpful. So, the time force of this is really important. And when you're trying to think about, do I put this in sort of a hereditary form of muscle disease, thinking more of an indolent core, something that's going to be slowly progressive versus one of those inflammatory or necrotizing pathologies, that's going to be a much more quick onset, rapidly progressive, Do I have that right? Dr Milone: In general, the statement is correct. They tend, acquired muscle disease, to have a faster course compared to a muscular dystrophy. But there are exceptions. There have been patients with immune mediated necrotizing myopathy who have been misdiagnosed as having limb-girdle muscular dystrophy just because the disease has been very slowly progressive, and vice versa. There may be some genetic muscle diseases that can present in a relatively fast way. And one of these is a lipid storage myopathy, where some patients may develop subacutely weakness, dysphagia, and even respiratory difficulties. Dr Albin: Again, I'm hearing you say that we really have to have an open mind that myopathies can present in a whole bunch of different ways with a bunch of different phenotypes. And so, keeping that in mind, once you suspect someone has a myopathy, looking at the testing from the EMG perspective and then maybe laboratory testing, how do you use that information to guide your work up? Dr Milone: The EMG has a crucial role in the diagnosis of muscle diseases. Because, as we said earlier, weakness could be the result of muscle disease or other form of neuromuscular disease. If the EMG study will show evidence of muscle disease supporting your diagnostic hypothesis, now you have to decide, is this an acquired muscle disease or is this a genetic muscle disease? If you think that, based on clinical history of, perhaps, subacute pores, it is more likely that the patient has an acquired muscle disease, then I would request a muscle biopsy. The muscle biopsy will look for structural abnormalities that could help in narrowing down the type of muscle disease that the patient has. Dr Albin: That's really helpful. When we're sending people to get muscle biopsies, are there any tips that you would give the listeners in terms of what site to biopsy or what site, maybe, not to biopsy? Dr Milone: This is a very important point. A muscle biopsy has the highest diagnostic yield if it's done in a muscle that is weak. And because muscle diseases can result in proximal or distal weakness, if your patient has distal weakness, you should really biopsy a distal muscle. However, we do not wish to biopsy a muscle that is too weak, because otherwise the biopsy sample will result just in fibrous and fatty connected tissue. So, we want to biopsy a muscle that has mild to moderate weakness. Dr Albin: Great. So, a little Goldilocks phenomenon: has to be some weak, but not too weak. You got to get just the right feature there. I love that. That's a really good pearl for our listeners to take. What about on the flip side? Let's say you don't think it's an acquired a muscular disease. How are you handling testing in that situation? Dr Milone: If you think the patient has a genetic muscle disease, you pay a lot of attention to the distribution of the weakness. Ask yourself, what is the best pattern that represent the patient's weakness? So, if I have a patient who has facial weakness, dysphagia, muscle cramping, and then on examination represent myotonia, then at that point we can go straight to a genetic test for myotonic dystrophy type one. Dr Albin: That's super helpful. Dr Milone: So, you request directly that generic test and wait for the result. If positive, you will have proof that your diagnostic hypothesis was correct. Dr Albin: You're using the genetic testing to confirm your hypothesis, not just sending a whole panel of them. You're really informing that testing based on the patient's pattern of weakness and the exam findings, and sometimes even the EMG findings as well. Is that correct? Dr Milone: You are correct, and ideally, yes. And this is true for certain muscle diseases. In addition to myotonic dystrophy type one, for example, if you have a patient who has fascial scapulohumeral muscular weakness, you can directly request a test for FSHD. So, the characterization of the clinical phenotype is crucial before selecting the genetic test for diagnosis. Dr Albin: Wonderful. Dr Milone: However, this is not always possible, because you may have a patient who has just a limb-girdle weakness, and the limb-girdle weakness can be limb-girdle muscular dystrophy. But we know that there are many, many types of limb-girdle muscular dystrophies. Therefore, the phenotype is not sufficient to request specific genetic tests for one specific form of a limb-girdle muscular dystrophy. And in those cases, more complex next-generation sequencing panels have a higher chance of providing the answer. Dr Albin: Got it, that makes sense. So, sometimes we're using a specific genetic test; sometimes, it is unfortunate that we just cannot narrow down to one disease that we might be looking for, and we may need a panel in that situation. Dr Milone: You are correct. Dr Albin: Fantastic. Well, as we wrap up, is there anything on the horizon for muscular disorders that you're really excited about? Dr Milone: Yes, there are a lot of exciting studies ongoing for gene therapy, gene editing. So, these studies are very promising for the treatment of genetic muscle disease, and I'm sure there will be therapists that will improve the patient's quality of life and the disease outcome. Dr Albin: It's really exciting. Well, thank you again. Today I've been interviewing Dr Margarita Malone on her article on a pattern recognition approach to myopathy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining us today. And thank you, Dr Milone. Dr Milone: Thank you, Casey. Very nice chatting with you about this. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

"In the history of science, innovative concepts occasionally arise from sudden left-field inspiration." Here we make sure everyone is up to speed on the types of CRISPR inhibition for FSHD and FSHD epigenetics s that we are all ready to evaluate the preclinical data supporting the Epicrispr Biotechnology EPI321 clinical trial.

"Good morning, and in case I don't see ya, good afternoon, good evening, and good night!" We take our time to evaluate publicly available preclinical data for EPI-321 used to support the Epicrispr Biotechnology first-in-human gene therapy clinical trial for FSHD. We discuss the data in the context of what is known from other neuromuscular disease gene therapy trials and integrate their own data in respect to what metrics are likely needed to be met for have any chance at providing benefit to patients.

"...and by the time they figure out what went wrong, we'll be sitting on a beach, earning twenty percent." This is part 2 of our podcast series covering the important factors in successful gene therapy and introduces the knowledge gained from other neuromuscular diseases and how it can be applied to positively impact gene therapy in FSHD. In part 2, we focus on viral dosing and how it affects therapeutic biodistribution and expression. In addition, we reveal what is known about variable durability of transgene expression and what to look for to predict a durable, or non-durable, therapeutic. Check out the MyFSHD Youtube for the music, as well.

"My friends are toys. I make them. It's a hobby. I'm a genetic designer." This is a two part podcast covering the important factors is successful gene therapy and introduces the knowledge gained from other neuromuscular diseases and how it can be used to positively impact gene therapy in FSHD. In part 1, we focus on AAV serotypes, transgene constructs, immune responses, and delivery. We look into DMD gene therapy and how that can impact the current FSHD gene therapy programs. Check us out on the MyFSHD Youtube channel as well.

"You were seeking some information of some kind?" Continuing our discussion with our young FSHD advocates, asking and answering some questions.

"And that would tell you what is obvious right now? That avoiding apple skins and pizza has no effect on this brutal disease?" Today we discuss the Cure FSHD for All (go to: www.curefshdforall.com) initiative for inclusion of FSHDers under 18 and those with limited mobility into clinical trials and for access to developing therapies.

To have your question featured in a future video, please email: questions@morses.tv Please include at least: Age, Weight and as much history as possible.

We love to hear from our listeners. Send us a message. This week's episode is one from the road, recorded in front of a live audience in Boston's Seaport neighborhood during the BIO conference (special thanks to MasterControl for making it happen). Amber Salzman, Ph.D., CEO of Epicrispr Biotechnologies (aka 'Epic Bio') explains how epigenetic editing is revolutionizing genetic medicine by controlling gene expression, without cutting DNA like traditional CRISPR technologies. Amber talks about FSHD, a progressive muscular dystrophy, how the company raised $68 million in Series B funding despite challenging market conditions, her partnership with Springbok Analytics for AI analysis of MRI images, working with a CDMO to manufacture a new treatment modality, and navigating the FDA during a time of disruption. Access this and hundreds of episodes of the Business of Biotech videocast under the Business of Biotech tab at lifescienceleader.com. Subscribe to our monthly Business of Biotech newsletter. Get in touch with guest and topic suggestions: ben.comer@lifescienceleader.comFind Ben Comer on LinkedIn: https://www.linkedin.com/in/bencomer/

Ready for an extraordinary tale of athletic longevity? At 73 years old Rick Colella's swimming journey spans from Olympic medals to over 50 Masters World records, proving that athletic excellence knows no age limits.Colella's remarkable career began with a fourth-place finish at the 1972 Munich Olympics, followed by a bronze medal in Montreal in 1976. But what happened after his Olympic glory makes his story truly exceptional. While most elite swimmers hang up their goggles after reaching competitive peaks, Colella never fully left the water. This consistent connection with swimming—even during his decades-long Boeing career—has become his secret weapon for sustained excellence into his 70s.Now competing in the 70-74 age group with Puget Sound Masters, Colella has rewritten the record books with over 120 national records and more than 50 world records. His training approach combines old-school discipline with modern technique refinements. Despite his Olympic pedigree, Colella humbly embraced coaching feedback that completely transformed his stroke mechanics later in life. "Your breaststroke timing is terrible," his coach bluntly told him—feedback that helped him adapt to modern techniques and continue breaking records.What drives someone to maintain such dedication for decades? Colella's answer is refreshingly simple: "I just love swimming. I guess I'm not even sure I recognize how much I like it, except that I must, because I never stopped doing it." This passion extends beyond personal achievement. After their son's diagnosis with FSHD muscular dystrophy, Rick and his wife Terry founded a research nonprofit, Friends of FSHD, that now raises nearly $1 million annually—connections he credits largely to his swimming network. The organization is all-volunteer.  We have no paid staff and our sponsors cover 100% of our operating and fundraising expenses. This means that 100% of donations to Friends goes directly to fund research. Rick Colella has emerged as a legendary figure in American swimming through his extraordinary Olympic career and record-breaking achievements in Masters swimming at age 70+.• Bronze medalist in the 1976 Montreal Olympics after finishing fourth in Munich in 1972• Set more than 120 Masters national records and over 50 world records• Trains six days a week with Puget Sound Masters at age 70+• Never fully stopped swimming after his Olympic career, maintaining consistency throughout his life• Found working with a coach after years of self-directed training revealed technique flaws that needed correction• Discovered that mental preparation and attitude significantly impact performance, even decades after Olympic competition• Co-founded Friends of FSHD Research with his wife after their son's muscular dystrophy diagnosis• Organization has grown from raising $180,000 in first year to nearly $1 million annually• Emphasizes consistency as the key to swimming success at any age• Enjoys the intergenerational aspects of Masters swimming and the supportive communityWhether you're seeking inspiration for your own athletic journey or curious about the mindset of champions, Colella's story demonstrates how passion, consistency, and community create a foundation for lifelong achievement. What might you accomplish if you never stopped doing what you love?Email us at HELLO@ChampionsMojo.com. Opinions discussed are not medical advice, please seek a medical professional for your own health concerns.

"You're gonna need a bigger boat." MyFSHD is our summer blockbuster passion project. We discuss how to get it done, whatever your "it" is, in the FSHD space, as well as our trip to Shanghai and Hanoi to continue our efforts to help FSHDers around the world.

Epicrispr Biotechnologies is using CRISPR to modulate the expression of disease-causing genes without making cuts to DNA. Its lead program is in development to treat FSHD, a genetic disorder that causes progressive weakness in the muscles of the face, shoulders, and upper arms. We spoke to Amber Salzman, CEO of Epicrispr, about how its one-and-done therapies work to target the epigenome, the company's lead program in FSHD, and the broader applications for its therapeutic approach.

"I gotta know what a 5 dollar shake tastes like." We continue our conversation with Tamara Gottlieb, who shares her years of experience helping to keep her family above the FSHD curve and improve quality of life. It's a lot of work, but it can help. Part 2 of 2. Tamara is one of the leaders (along with Emily Ca and Wayne Nesbit) of the "FSHD - supplements, nutrition, and peer support" Facebook gropou, so check it out for more information.

"You are what you eat, and I'm freaking delicious!" Our guest today, Tamara Gottlieb, is the driving force for our First Family of FSHD Fitness, Nutrition, and Lifestyle, and she shares with us what she has learned over her years of experience helping keep her family above the FSHD curve and improve quality of life. It's a lot of work, but it can help. Part 1 of 2. Tamara (along with Emily Ca and Wayne Nesbit) is one of the leaders of the "FSHD - supplements, nutrition, and peer support" Facebook group, so check it out for more information.

"Come on. No, no, don't do that. Don't give me the pouty batface." We have video today (!) for our special guest Carme Farré, who founded FaceToned®, and she shares her experiences as part of an FSHD family and how her techniques for facial fitness can help the FSHD community. If interested, you can arrange a free consultation below:

"Never go in against a Sicilian when death is on the line!" We have both survived so far and are back with part 2 of your Reddit questions on FSHD.

"The most valuable commodity I know of is information." Today we discuss current clinical trials in FSHD and the foundational science behind the technology. While NIH has funded much of the foundational science that todays therapeutic approaches are built upon, it is the private individual and foundation support from those with vested interests in a rare disease that drive industry investment that gets the therapies over the line and into the clinic and ultimately to patients.

Episode 84.  This week is the Jewish holiday of Chanukah which celebrates light in the dark days of winter. It is a time of contrasts and turning. Our candles add light in the darkness as we appreciate the slow turning towards longer days. In that spirit, this conversation explores another kind of opposites and turning – immersing in the mikveh as a way for a Jew to mark a transition. Haviva Ner-David, an American Jew who has lived in Israel more than half her life. She is the founding rabbi of Shmaya: A Mikveh for Mind, Body, and Soul. Located in northern Israel, it is the only mikveh in Israel that allows people to immerse as they choose. Haviva talks about the biblical sources of the mikveh, her long standing passion for this ritual, and the many uses of the mikveh, reaching far beyond the monthly practice for Orthodox women after their menstrual periods. Each reason for immersing in the living waters of the mikveh marks a transition or celebrates a milestone in life. Bio:  Rabbi Dr. Haviva Ner-David is a rabbi, author, spiritual companion, and activist. She is the founding rabbi of Shmaya: A Mikveh for Mind, Body, and Soul, the only mikveh in Israel open to all humans to immerse as they choose. Her books include three memoirs, two novels, and a children's book. As a spiritual companion, she works with people of all faiths. Haviva was ordained privately by an Orthodox rabbi and institutionally by the One Spirit Interfaith-Interspiritual Seminary. Haviva lives with FSHD, a form of muscular dystrophy, which has been her greatest life challenge and teacher. She and her life partner, Jacob, have seven children. Her activism takes various forms, including building Arab-Jewish partnership in the Galilee, where she lives.Highlights: ·       Biblical sources for Mikvah·       Shmaya, a unique Mikvah in Israel ·       Immersion as spiritual practice and ritual process·       Practical elements of the immersion process·       Intentionality and KavannahReferences:Rising Tide Open Waters Mikveh Network – https://www.mayyimhayyim.org/risingtide/Social Media links for Haviva:  Website – https://rabbihaviva.com/Facebook – https://www.facebook.com/haviva.nerdavid.1Blog on the Times of Israel – https://blogs.timesofisrael.com/author/haviva-ner-david/Social Media links for Méli:Website – Talking with God ProjectLinkedIn – Meli SolomonFacebook – Meli SolomonTranscript on BuzzsproutFollow the podcast!The Living Our Beliefs podcast offers a place to learn about other religions and faith practices. When you hear about how observant Christians, Jews and Muslims live their faith, new ideas and questions arise:  Is your way similar or different?  Is there an idea or practice that you want to explore?  Understanding how other people live opens your mind and heart to new people you meet. Comments?  Questions? Email  Méli at – info@talkingwithgodproject.org  The Living Our Beliefs podcast is part of the Talking with God Project – https://www.talkingwithgodproject.org/

"You know the Greeks didn't write obituaries. They only asked one question after a man died: 'Did he have passion?'. " Today we are joined by our CRISPR Goddess to discuss her new FSHD optimized gene therapy cassette that is stronger, safer, more compact and all around better than anything out there for use in FSHD and neuromuscular gene therapy approaches.

"I always tell the truth, even when I lie." Today we are joined by our CRISPR Goddess and cover the Fulcrum Therapeutics REACH phase 3 clinical trial data release and discuss our journey with Fulcrum from the beginning. While very disappointing from several aspects, in the end a lot of benefit truly has been gained for the FSHD field and we are grateful for Fulcrum's contributions to help others going forward. And there are many others coming along, this is the beginning and not the end for FSHD therapeutics.

Johannes Mallow was 14 when he contracted the muscle disease, FSHD. His physical strength began to erode until he would no longer leave his apartment for fear of collapsing. It was not until he discovered memory sports that he found the motivation to get himself a wheelchair and begin training his mind, with the intention of becoming the world champion. Subscribe for ad-free interviews and bonus episodes https://plus.acast.com/s/the-unmistakable-creative-podcast. Hosted on Acast. See acast.com/privacy for more information.

Jacqueline's symptoms of FSHD muscular dystrophy began at 16 years old. She shares with us today how she manages chronic pain and what that looked like throughout her pregnancy and birth journeys. Jacqueline is also a sexual violence trauma survivor and went through three pregnancy losses. Through her nonprofit organization and as a birth doula, she is a strong advocate for trauma-informed care for all women. Jacqueline shares inspiration and advice throughout the episode for women who also have a history of trauma as well as those who are trying to navigate birth with a neuromuscular condition. Her proactive approach to caring for her body and heart allowed Jacqueline to have a beautiful, empowering, and healing VBAC, especially after enduring so much.  Anesthetic Management for Dystrophy ArticleNeeded WebsiteHow to VBAC: The Ultimate Prep Course for ParentsFull Transcript under Episode Details Meagan: Hello, Women of Strength. Today's episode is a VBAC episode, but it has an extra topic that is a first for the entire podcast life. In 320-something episodes, we have never talked about this specific topic. The other day on social media, I had a couple of spots so I reached out and I am so grateful for Jacqueline. Are you in Canada? Jacqueline: Yes. Meagan: Yes. She's from Canada and she reached out and was like, “Hey, this is something about my story.” And I was like, “Yes, let's do that because this would be amazing.” One of the things that we are going to be talking about today is FSHD muscular dystrophy. Jacqueline: Dystrophy. Dystrophy. Meagan: Okay, yes. We are going to be talking about that a little bit more and the challenges that you have had to go through with all of this. If you wouldn't mind before we get to the review, will you tell us a little bit more about FSHD and one, what is it? Two, what are the things that we are told because you have it and how you had to birth if you were told?Jacqueline: Yeah, absolutely. FSHD is a form of muscular dystrophy. It's quite rare and it essentially affects the muscles in my shoulders and in my facial muscles as well. For everyone with FSHD, your symptoms present quite differently. Of all of the types of muscular dystrophy, it is one of the more common forms, but in the big scheme of conditions that you can live with, it definitely is still considered to be rare. I was diagnosed in 2018 officially though I had symptoms starting from the age of 16 and I gave birth to my first child when I was 21 years old. I didn't have too many symptoms at that time. Going into my twenties, I started to have more atrophy in my shoulders, my lower back, and sometimes in my feet. My second and third processes were a little bit different, but overall, in terms of pregnancy and birth, my specialist always shared that you're able to carry a baby and you're able to give birth. The atrophy that we experience doesn't necessarily affect that process thankfully, but I've always been someone who is very proactive in terms of minimizing my pain and trying to do different types of therapies to minimize the chronic pain that I live with so I'm very focused on that during pregnancy especially. In my most recent birth which happened 5 weeks ago now, I really focused on making sure that my body was very strong and at its optimal comfort level that I possibly could be while pregnant in order to achieve a successful VBAC. Meagan: Oh my gosh, thank you for sharing and we're definitely going to go in through your journies and I'm sure it's going to come up. We're going to learn more about how you did that, how you made sure your body was at its most comfortable spot that it could be while growing a baby and how it's impacted your life. Thank you for sharing. I do want to share a Review of the Week before we get too far into today's episodes. This is by Rachel Thornton and it says, “Thanks for giving me the confidence to have a VBAC.” It says, “I am so glad I found this amazing podcast when I was newly pregnant with baby number two. After a long and traumatic first birth experience that ended in a C-section, I cautiously hoped that I could have a VBAC. Using this information that I learned from hearing other people's stories on The VBAC Link, I felt confident and prepared for the birth of my son. On October 9, 2020, I had a beautiful, redemptive VBAC and welcomed our boy into the world. Thank you so much for helping me achieve this dream.” Girl, Rachel, you are amazing. Congratulations and thank you for sharing the story of your dream. I am so happy for you that you got your VBAC and as always, if you have opinions about The VBAC Link, please share them. Rate us. Give us a review and let us know what you think and maybe how we're changing your dream as well. Meagan: Okay, Jacqueline. Okay, so you have three babies. Jacqueline: Yes. Meagan: One is 5 weeks old. 5 weeks? Jacqueline: Yes. Meagan: Itty bitty, bitty. Wow. Thank you so much for taking the time 5 weeks postpartum and you could be taking a nap right now and you are here with us sharing your story. I'm going to turn the time over to you and let you share away. Jacqueline: Great. As mentioned, I have three kids but this was actually my 8th pregnancy so I am quite well versed on pregnancy and birth and I am actually a doula myself. I went through the training process after I experienced three consecutive losses when I was trying to get pregnant with my husband. This was back in 2020. With that, I sort of had a new sense of knowledge coming into pregnancy and birth. That was following the birth of my daughter. I had her when I was 21 years old and that process was very different than my other two pregnancies and birth stories. Unfortunately, when I was pregnant with her I was in an abusive relationship. It's a very unique story I guess you can say. I was living abroad at the time so most of my pregnancy care actually took place in Kenya where I was doing work with my nonprofit organization and then I moved back to Canada when I was 6 months pregnant and lived with my family at the time. They really supported me and just came to a level of peace before giving birth and mentally preparing for becoming a parent at a very young age and as a single mom. But going into that birth process, I really did no preparation at all. I found myself during this pregnancy and as I was preparing for the birth of my second son which happened just 5 weeks ago, I really found myself reflecting on my pregnancy and birth experience with my daughter. With her birth, I had no foundational knowledge aside from what I had seen in movies really and because of that, at 39 weeks, I ended up getting induced. It was a very long birth process. I was already in a very traumatized state because of what I was going through at the time and I had my mother and my grandmother there with me when I gave birth but my mother had also gone through inductions because my brother and I stayed locked in there until well over 42 weeks actually for both of my mom's pregnancies. She had never experienced anything different. I didn't think twice about experiencing an induction and to summarize that birth story really, I ended up giving birth vaginally after over 24 hours of laboring. I had a failed epidural which I got just before she was born about an hour and a half prior to her being born and I had no movement throughout the entire process. I quite literally just moved from one side of the bed to the other. I was watching Ugly Betty throughout my entire labor and delivery. That I do remember. It was my comfort show at the time. I largely just wanted the process to be over so that I could be with my baby and there were a lot of things that happened throughout that labor process that I didn't even reflect on as unnecessary interventions again until this pregnancy. Jacqueline: 7 years later, when my husband and I decided that we wanted to start the process of expanding our family, we were really conscious about making sure that I didn't have that same experience. I really opened up to him about how I was just in a state of survival with my daughter's birth and how I didn't want to go through that again. Again, at this time, I also was a doula as well. After we had experienced our losses, it was really important to me to just expand my knowledge and I felt really called to get that training because of the insensitivity that I experienced when I was navigating loss. Coming into the process of now having a rainbow baby and wanting for it to be a really redeeming birth as well, I tried to make sure again that my body was very strong coming into labor. One thing that I think stands out as a person living with a disability with FSHD muscular dystrophy is that often with conditions that are rare, you have providers who when they hear that you have a rare condition, they immediately want to turn you away. Meagan: Yeah, they get scared. Jacqueline: Exactly. I reached out to the midwives' team in my community. At the time we were living in Northern Ontario in Canada which is more rural and remote so we only had one midwife team in our area. When I put in my form stating that I had a form of muscular dystrophy, I was immediately turned away and that was a little bit deterring so I reached out to a friend of mine who was a midwifery student. She encouraged me to just call the practice and explain what my condition actually was and how it did not affect my ability to give birth at all. I was not high risk. In doing that, they changed my status in their system and put me on the waitlist. Within our community, you essentially have to call the midwives at 5-6 weeks pregnant if you want to get in. It's very unfortunate because they provide such incredible trauma-informed care and support, but it's something that is very heavily regulated and they are only allowed a certain amount of clients each month.Because of that, a lot of women who are giving birth don't get to access those services. Fortunately, I received a call about 2 months into my pregnancy that I was now able to be accepted as a patient. I was paired up with an incredible team. I'll give a shoutout to them, Meredith and Sara from Sudbury Community Midwives. They really helped change the way I viewed being pregnant. During my first pregnancy, I absolutely hated the process. I am the first to admit that. I was going through so many hardships on a personal level and I just really felt that I didn't have any sense of control or agency over my body at that time. That really translated into my birth experience as well. They really helped me to navigate through that and really connect with my body and feel empowered through the process. I really loved as well just in general with midwifery care that they allowed me to have the space to ask questions. I never felt rushed and I never felt that because I had a disability that I had to have a certain type of birth where I wasn't in control. I think sometimes for folks who have disabilities, that's often what you are made to feel like has to be the process. Obviously, everyone has a different background, but often that isn't the case. Often, you can still decide what outcomes you will encounter both in your pregnancy and in your birthing experience. Jacqueline: With that, I decided that I wanted to have a home birth. We did everything humanly possible to prepare for that process. I was going to a chiropractor quite regularly. I was seeing a naturopathic doctor. I had gone to my specialist to make sure that my body was ready for birthing and everyone was getting me into the best possible shape I could be in to give birth. The midwives' team were very aligned with what we wanted for our home birth as well.I really wanted my daughter to be a part of that process and again, being my birth following three consecutive losses and the first birth after a baby after having my daughter and not really getting to fully even embrace that first year of her life largely because I was navigating through so much trauma myself after leaving my abuser, I really just thought that would be a meaningful experience for us as well. But my son had other plans. At 39 weeks, I remember it so vividly. I was in the bath and I quite literally watched him flip from head down which he had been for weeks to transverse breech. I thankfully had a midwife appointment the next day and said to them, “I'm fairly certain that my son has turned.”They said, “There is no way. Statistically, this is so unlikely. You are so far along in your pregnancy. Don't stress. I'm sure you are mistaken.” Of course, very quickly, we learned that he had flipped. I think that too really speaks to as someone with a disability you are so in tune with your body. You feel every little change. You are so used to having discomfort and pain on a daily basis. I knew the minute that he had flipped so I advocated for myself in those moments and said, “Can we have an ultrasound to confirm it?” We did. Even in that process, I really made sure that I stayed a part of my birth. I had a strong feeling that I would probably be having a C-section. It wasn't what I planned for, but going into everything, I think my doula training did help in this regard. I was ready for whatever may happen. I had sort of a plan A and a plan B. Plan A obviously was that I would be able to have my home birth if by some miracle he flipped back, but plan B was that I would be involved in the decision-making process for a C-section. I spoke with my midwife team and we found one OB/GYN in my community who was willing to try and do an inversion, so to try and manually move him back into the head-down position. We did a consult at our hospital. This OB/GYN and I actually had a history. He had supported me through two of my losses and was actually part of helping us successfully get pregnant with my son. It was actually very full circle that he would then be a part of my birth. I felt comfortable in his care as well. He knew my history. Part of my story as well is that I am a survivor of sexual violence. That's actually what I do professionally with my work. He knew that a lot of elements of birth are very triggering for me as well so he really wanted to ensure that we would be as minimally invasive and as trauma-informed as possible. Unfortunately, our ultrasound showed that I had a limited amount of fluid. He was still willing to try and do the inversion, but he said, “To be totally transparent with you Jacqueline, this is going to be incredibly traumatic for you. I refuse to do it unless you get an epidural because it's going to hurt and you've gone through so many losses. This is the baby that you've been waiting for. Make an informed decision of what you think would be best for you, but I just want you to know everything going in.” I really appreciated that as well that he spoke to me from a very personable standpoint knowing my background and our history and ultimately, we decided that a C-section would be what was best for us. Jacqueline: Everything went smoothly with the C-section, thank goodness and I welcomed my son in a very powerful way. I still think because I was very involved in the decision-making process, I felt very at peace with the fact that I had to have a C-section. My midwives were still in the OR with us when we were going through that process and they were still with us for the continuation of care and I also had the connection with my OB. He made sure that he really congratulated us in welcoming our son and highlighted that it was really special that he was here now after he had seen our journey. It felt very good, but the recovery was just so incredibly difficult as someone who lives with a neuromuscular condition. I think no one at the hospital was really aware of the fact that I needed a different timeline in terms of when to get up and get moving in comparison to other moms who don't have the condition that I live with. Everything was very rushed. I literally left the hospital 24 hours after having a C-section which is the standard of care where we live. Meagan: 24 hours? I didn't know that. Jacqueline: 24 hours. It's appalling in my opinion. Meagan: Very quickly. Jacqueline: It's something that I don't think should be encouraged, but I returned home and really just wasn't prepared for what was to come. I didn't feel like I had even a full range of mobility for probably 6-8 months. It was just traumatic in that sense that I hear so many people around me sharing that after a few months, they felt that sense of normalcy again and reconnection with their body to some extent. For me, my timeline was just very different. For anyone who is going through the process of giving birth and lives with a condition like a neuromuscular condition or something similar, I think it's important to have in the back of your mind that your timeline will be different and that is okay. If it is possible for you to give birth vaginally or to try and go for a VBAC or try and avoid a C-section if not medically necessary, do everything in your power to try and make that possible because often even the care instructions that I was provided with in postpartum were not aligned with the realities of what I face as a person with a neuromuscular condition.Because it's so underresearched, my OB/GYN for example did not know what kind of recommendations to give me in terms of what to expect and how to prepare myself so I think that's just something to keep in the back of your mind if you are trying to make informed decisions about what to expect if you are someone who lives with a neuromuscular disease. Jacqueline: That being said, when my son was 2, or I guess we actually got pregnant 18 months postpartum so exactly at the time you are recommended to start trying again. This was not something that we necessarily planned for and we did not think it was possible to have another child without planning so we just took that as an unexpected blessing and my pregnancy with my second son went very smoothly. I did notice though with my pregnancy with my first son, I didn't seek chiropractic care and other services like massage as much as I probably should have. I also wasn't as active prior to giving birth as I probably should have been in order to help myself with mobility and also with my postpartum healing. So I was very proactive during this pregnancy. We had just moved from northern Ontario to southern Ontario for my husband's work so we were now about a 5 ½-hour drive from the majority of our family and support system. One of the first things that I did when we moved to the community was find a sort of new care team to help with FSHD– just the regular symptoms, not even pregnancy-connected. I found The Wellness Hub which is located in Hamilton, Ontario for anyone who is in the area. They are a practice that primarily specializes in women's health and so I just felt very at home immediately when I entered their clinic and I found an amazing chiropractor there who supported me from the very beginning of my pregnancy and then when I reached 20 weeks, I decided that I wanted to start going more frequently so I was going for weekly chiro visits. I made sure that I also did massage at least once a month up until 30 weeks and then I was going bi-weekly from 30 weeks onward. I think that's also very important for anyone who is living with a neuromuscular condition or something similar. Prioritize your care and don't put yourself in the back corner preparing for your baby to arrive. Really make sure that you focus on your care and healing as well. So to fast forward a little bit, everything went well with my midwife care team in this community as well and as we neared our 35-week mark, I said, “Hey, we should probably start talking about labor and delivery.” so they were actually quite slow to start having that conversation. I don't even think it came up until 36 weeks for us because I had always gone past 39 weeks. They thought I would have time. They didn't think I would go into labor early. I didn't, but I still thought we should be having those conversations. My husband is a pilot so he's actually gone every 2 weeks and so because I didn't have family close by and because I knew I may potentially not have my husband at home either, I hired a doula team. I also did this during my second pregnancy, well my second birth as well, but unfortunately at that time, it was COVID so we couldn't have doulas in the hospital. But she did support me mostly in preparing my husband for what to expect, but she had a background in kinesiology as well so she also helped prepare my body physically for the birthing process. She had studied with a training called the Body Ready Method. I really wanted to find a doula who had the same training background because I found it very beneficial. I did some research and found a doula team, Leanne and Roseanne, who are in the Hamilton area with Hamilton family doulas and they worked with me from around the 35-week mark as well to get ready for my birth. Largely because I had the knowledge background as a doula myself, they didn't have to go through too much about what to expect in your birth. We largely just discussed the different types of movement I would want to be doing in early labor and also really helped me to prepare for what I had hoped going in would be an unmedicated birth but also talked about the different options that we may have with a really strong focus on having a VBAC. That was my number-one priority even in selecting gmy provider. I really made sure that I called around and fortunately, in my area, every midwife practice I spoke to is very aligned with me having a VBAC. Meagan: Awesome. Jacqueline: Ultimately, the providers I chose, my team, Sara and Emily, were really aligned with making sure that I was very comfortable, that I wouldn't be moved around too much after giving birth. I really emphasized as well that I wanted to try and avoid giving birth on my back because I knew that any additional pressure on my hips and lower back would probably lead to a longer postpartum healing for myself just because of my condition. Everyone seemed very aligned. As we neared closer to 39 weeks, that's when we started to have discussions about induction and things of that nature. One thing that is standard practice where I live is that you would have a consult with an OB and an anesthesiologist from 20 weeks which I thought was crazy. At the time, I said, “I don't want to have an epidural. I don't want to have an OB involved in my birth process at all. I don't want a C-section. I'm not even meeting with these folks because I want to manifest the birth that I want.” So they were a little caught off guard by this. They did try and schedule me again. I believe it was around 30 weeks and I just declined again so being informed about what my options actually were in terms of what I can accept or say, “No thank you” to was very important and for anyone who is going through the process as someone who is living with a disability, I think you really need to make sure you do educate yourself on what you can say no to because you have that extra layer that people can always fall back on to say that you are kind of treading the high-risk zone. You can push back on that politely and say that you are not high-risk. That's why you are here and that you prefer to just stay with your current providers and your current care plan. Meagan: I was going to say too that Julie mentioned this on a previous episode that I loved and is sticking with me too. You can say, “How will my care change if I do this? If I meet with these people or if I have these extra visits?” You can say, “How is this going to change?” If they say, “Oh, it's just to let you know who they are,” then you're like, “I don't care.” Jacqueline: That's essentially what I did in person was saying, “Why do I need to meet with an OB?” They said, “It's standard practice here.” I said, “I really would prefer not to. I am working on a huge project right now with my professional career. I have two other kids. I just don't have the time or capacity to be having meetings with someone who probably won't even be on shift when I give birth anyway. So respectfully, no thank you.” At the 39-week mark, we discussed what would be our next steps if I did go over 41 weeks which in my province is sort of your cutoff time from when you can give birth without induction for a VBAC. So within my community, VBAC anywhere other than a hospital was just not even discussed. Because of my condition, I did agree that I would do a hospital birth. Now, if I ever had another child, I would probably actually want to try for a home birth. But yeah, I went into the process trying to keep an open mind, trying not to be too judgmental going into a hospital environment. I spoke about this a lot with my doula team. I got to hear a little bit about their experiences within this hospital because they had supported clients there to give birth. I had a friend who is a nurse there in the labor and delivery department as well. Ultimately, everyone gave me very positive reviews which put me at ease. I think it's important as well to do a little bit of research about the care team that you select and the hospital that they have privileges in. If the hospital where they have privileges isn't necessarily VBAC friendly, then maybe it's a good idea to get a different care team. That may be something that is very Canadian-specific, but our midwife teams only have privileges in certain hospitals, so you have to make sure that you do that extra little step of research. I also spoke to a lot of moms in a community called Mamaraderie here in Hamilton, Ontario. I hope I'm pronouncing that correctly. A lot of the moms shared very positive VBAC stories. I was actually referred to the podcast several times by moms who I spoke to which was great to hear as well. Yeah, basically from that time forward, the talk was really just how do we ensure that I have a successful VBAC with my midwives? They didn't really speak to me too much from their end about induction. They recommended that I have a consult with an OB at the hospital. I went in and I spoke with a resident. I believe she was a fourth-year resident. To be quite frank, the experience was terrible. She essentially told me that if I needed to be induced, my care with the midwives would end until my baby was born and that they would not be there with me when I was laboring because their care was redundant which I found to be incredibly insulting. Meagan: Yeah. Jacqueline: I was just floored that she would state that. She did emphasize that the decision if I wanted to be induced or I wanted to wait out labor was my decision. She spoke to me about C-section even though I expressed that I did not want it. She said, “Let me just cover my bases and tell you what your options are.” I respect that. It's probably what she was trained to to but it definitely put my guards up because I explained in detail why as a person with FSHD, it is not in my best interest to have a C-section, then when she provided all of my different options, and I was also big on hearing the statistical options if I waited to go into labor naturally or if I was induced in a more controlled environment type of situation what the best outcome would be, I had heard all of these statistics through the podcast but I didn't listen to one specific episode talking about induction yet so after I had a major breakdown after leaving the hospital, I spoke to another friend of mine who is also a doula and she recommended listening to the episodes specifically on induction. That helped a lot more than speaking with the resident to bring some clarity in terms of what the best outcomes will likely be if I were to wait versus if I were to go down the induction route again. I already knew from my birth with my daughter that induction using oxytocin doesn't even really necessarily work very quickly for my body. I wasn't really convinced that it would speed up the process. If anything, I remembered it being a 10 pain from the beginning with very minimal dilation and an incredibly long process. I knew that in my area as well, if I'm birthing in the hospital environment and I'm induced, I need to be monitored 24/7 and that meant that I wouldn't be able to move around. It meant my plan to have early labor in the bath would no longer be an option. It also meant that if I went over the 24-hour mark, I wouldn't even have a choice. They would just tell me that I would need to have a C-section per their policies. I said, “Okay. I'm going to give myself more time.” From 38 weeks, I had been going to chiro again weekly. I'd been doing massage weekly. I started doing acupuncture once a week and I also started doing things like the Miles Circuit and things of that nature to try and induce labor. One thing around the 39-week that started was that I was having contractions that would stop after a certain number of hours. Even if I did movement, I would take baths trying to check if they were Braxton Hicks. I'm still not entirely sure what they were because they felt a little bit stronger than when I had Braxton Hicks but they would just stop. Meagan: Like prodromal labor. Jacqueline: Yes, starting from pretty well the 39-week mark. Then there would be days at a time where I would have nothing. In week 40 I knew, Okay. my deadline is next week. I need to amp this up a bit. My entire care team at The Wellness Hub were all fixated like I was on my having a VBAC. Now at this point, when I would come into my appointments, everyone would be waiting at the door because that would mean I'm going into labor. I felt like I had a very supportive team around me and we started to do acupuncture twice a week during my 40th week. I also was going to chiro twice a week and doing massage as well. I think even in my 40th week, I did massage twice in that week. I took one of their cancellations. Meagan: Yay, good for you. Jacqueline: We did everything humanly possible to try and induce labor naturally. Because I had never experienced a sensation of natural labor, I didn't know what to expect in terms of the sensations. My doulas didn't necessarily describe it or know how to describe it either in terms of what was not labor and what was. We were all just waiting around. Every time I would have contractions start and stop, they would be like, “Okay, maybe it's going to happen but it's probably not because it's been many days of it starting and stopping.” Jacqueline: On March 7th around 1:00 AM, I started to feeling contractions again but much like my doulas, I said, “Oh, I'll sleep through it.” They started to intensity and get more close together, but my first son was a terrible sleeper and so he used to wake up about every half hour to an hour so from a sleep perspective, I'm very used to waking up often. So when my contractions started getting closer together, I didn't really think too much of it. My son came into my room around 2:30 that morning and I realized, “Oh my goodness. My contractions are 5-7 minutes apart at this point for the last hour.” He came into bed with my husband and I tried to stay in bed, but they were just too strong so I went into the bath. I realized I had lost my mucus plug.I got in. I was trying to remain comfortable in the bath. This time, they were just intensifying so I had a feeling that this was early labor. Meagan: Yep. Jacqueline: I remember my daughter came into the room. Initially, I asked her to be my mini doula before I called in my doulas and she saw me in pain and I could tell by the look on her face that she was not going to be my mini doula because she was terrified. She said, “Are you okay?” She stayed with me for some time and eventually, she went back to bed. I stayed in the bath for about an hour just breathing through contractions. I think it was 45 minutes in when I started to time them using an app just to know if I should contact my doulas and say, “Things are starting to happen.” The week prior, I did my first cervical check. I was less than 1 centimeter dilated. I knew my body. I knew that I don't dilate easily. I remembered that from my first birth so I just mentally prepared myself for what could be a long labor. My contractions around 5:00 AM were about 5 minutes apart. I live about a half hour away from my hospital so I knew that I should probably contact my midwives to just let them know that contractions were 5 minutes apart. When I gave them a call, they said to come in around 6:30-7:00 AM unless things really intensified then come in immediately. I woke up my husband. My dad had actually driven down from northern Ontario to come and stay at our home just because I had a feeling. I gave birth on a Friday and on the Wednesday I told him that he should probably come. I just knew that I probably wouldn't even last until the weekend when he anticipated to come. So he came and took my son. Yeah, things just got more and more intense. By the time we got to the hospital, I was breathing through contractions about every 4 minutes. Sometimes they were a little bit closer together so we went up to labor and delivery. We saw our midwife and she told me that I was still 1 centimeter dilated and that it would probably be a long process. She recommended that we come back home which we did. I didn't feel too disappointed at that time because she recommended I return home because she knew that I wanted to have more ability for movement. She knew that would help with my condition and she also knew that I wanted to be able to be in the water. I really appreciated that she had that recommendation. I let my doulas know that that was what was going on. Initially, when we went in, we called one of our doulas to give them a heads-up that we were headed into the hospital. We ended up staying at home for about 2-3 hours where I really tried to move around. I would recommend to anyone who has this type of condition as well that movement really is your best friend.Even though it feels like it won't be comfortable, in your postpartum recovery, you will be grateful that you moved around and didn't stay stagnant in one position. We were only there for about 2.5 hours. My mom had driven down that morning as well and she just watched me trying to get some rest in bed. My contractions were about 2-3 minutes apart at that point. I said, “I don't feel like he's descending so I'm not worried about that,” but she said, “Your contractions are so close together. I'm worried you are going to give birth in this bed at any minute.” I knew that we were not there because I could feel that we weren't there. They were very close together and they were intensifying so we did go back in. From there, things went pretty quickly. Well, it felt pretty quickly but it was not pretty quickly. We got in and I had a replacement midwife so she wasn't someone from my initial care team. My midwife actually was feeling unwell between when I saw her in the morning and when I got into the hospital. But oddly enough, this midwife, Elizabeth, reminded me so much of my mother's best friend. She looked like her physically. She sounded like her so I felt like it was someone close to me even though I had never met her before. She surprisingly recommended the internal monitoring to me several times which I declined and I will say for anyone who has a midwife, often we don't anticipate that anything will be recommended by a midwife that maybe we are not comfortable with, but if that happens and even if you have the best relationship with your provider and you fully trust them, you are still allowed to decline an intervention if it's not medically necessary. Meagan: Yes. Jacqueline: So I did do that very respectfully as well. I was monitored 24/7 throughout my process of being in the hospital. When I initially came in, my son's heart rate was not accelerating at the rate that my midwife thought we should be seeing so with that, she admitted us. Initially, she had just started out with the monitoring and was going to send us back home because I was only 2 centimeters dilated but she decided to keep us there. The OBs that she consulted with when she saw the heart rate acceleration was not where they typically like it to be, they weren't concerned which also put me at ease because they obviously were not providers who were trying to rush me into a C-section. She had explained to them what my background was and how I really wanted to avoid it and they already seemed to be aligned with that. That brought me a lot of ease too. We went through that labor process of again lots of movement. My doula came in. She had me doing as much as she could to help me ease my pain. Around 9:00 PM, I decided that I wanted to get an epidural. Largely to be honest and transparent, it was because I found that cervical checks which are often aligned with a VBAC in our province anyway. You have to have that monitoring. I found it to be very triggering and I felt my body tensing up and becoming less and less open and comfortable every time I had to have one done. I did try and delay them as much as I possibly could, but I also understood why they needed to happen to see how I was progressing because I had been in labor for several days at that point. I had essentially started having the prodromal labor 3 days prior. I knew that my baby was going through that. I was also a little bit more accepting to going outside of what I originally thought my birth plan would be. I was exhausted at this point too so I wanted to try and have a little bit of rest. When the anesthesiologist came in– and this is where I would actually recommend for any folks who have a neuromuscular disease or anyone with a similar condition to do that initial anesthesiologist visit which I initially declined. I regret doing that now because when I did need to get an epidural done, the anesthesiologist had done a lot of research so it took her about an hour just to come and give me my epidural. She explained it was because she was actually researching my condition to make sure that she wouldn't do it incorrectly and make sure that I would actually have a successful epidural. Meagan: If you had done the consult, would someone have already done the research and put that in the notes? Jacqueline: Yes. Yes. She also told me something that I had never heard before as well that within labor and delivery specifically, there is one drug that can be sometimes given for pain management that a person with muscular dystrophy is not supposed to have so she said she wrote in my chart that I was allergic to that type of medication just to ensure I'm never given it. She said that she doesn't anticipate that it would affect someone with my type of muscular dystrophy because my lungs aren't necessarily affected but for some folks who have other forms of muscular dystrophy, it can be fatal. She said just for the future if I ever needed to have any type of sedation that I should try and do a consult earlier. That is a good recommendation that I would have for any folks even if you're thinking you're not going to have an epidural in your birth plan, I would say to still go for that specific appointment just so they can get your health history and have it in your chart, in your notes, get to know you, and make sure that they are advocating for you when you are in the hospital. Part of my recommendation as well would just be to put your pride aside sometimes. I myself thought that I was protecting myself in not going to those appointments and doing the best form of advocacy that I could but I was actually hindering myself to an extent. Meagan: Yeah, but at the same time, they didn't say anything like that. “This is the reason why we would like to meet with you.” Jacqueline: Yeah. I did explain that to my midwife team afterward as well and said, “Please share widely throughout the community because I think for anyone with a neuromuscular condition, we can give birth successfully. We are not high risk, but this element should be noted and you should explain that in this way so that even if a mom is not wanting to have an epidural, in the case of an emergency, she is not given a drug that can be fatal for her.” Meagan: Right, yeah. Jacqueline: So it was that piece of advocacy. After I had the epidural, we had the OB come in for a consultation because I had been laboring near the 24-hour mark at this point. We started talking about the potential of having oxytocin. I wasn't explicitly against any forms of induction because again, I had been laboring for 3 days off and on but I just wanted to try and hold off as long as possible. It was an OB resident who I spoke to. Her name was Dr. Tam. She's fantastic. She just explained why this process would be beneficial to start now. She said she would need to do a cervical check just to see where I was at from my previous check about an hour prior. They said they typically like to see dilation by 1 centimeter each hour when you are a VBAC patient who's admitted. So at one hour prior, I was 4 centimeters and when she checked me, this would be close to 10:30ish, I was a 6. There was progress and I said if I've gone more than 1 centimeter within the last hour, do I even need the oxytocin now? She spoke with her attending who said, “They could hold off,” but if I wanted to prevent myself from having a C-section, it might be a good idea just because I had been in labor for several days. At that point, I understood and we had also seen some heart dips a few times which were easily resolved through movement, but they said, “We really want to support you in not having an emergency C-section and have the VBAC that you're wanting. You decide, but we'll have the conversation again in an hour if you don't want it.” I decided that I was okay with it just to see if things would progress with having one dose of oxytocin. I did express that if after one hour that we didn't see any change that I wanted to be off the drip essentially and just let things progress naturally. They were comfortable with that. We tried it and at that time as well, my doula put me into a certain positioning which I felt to be very beneficial for my progression. That was the flying cowgirl position. Meagan: Yeah, with the peanut ball. Jacqueline: Yes. One of the nurses had recommended a different position, but Leanne stepped in and said, “I think we should put her in this position.” At the time, my midwife was still there. She said, “Yep. I agree. Let's do it.” They got me into that position. I was in that position for about 15 minutes and then I felt an insane urge that I needed to poop. This is kind of a funny story that moms will relate to and probably laugh at but I just kept saying to the nurses and at this time, my midwife said, “It's going to take you a few hours. I'm going to take a rest and come back.” I said bye to her but then I was talking to the nurse and said, “Look. I haven't pooped in a few days. I'm realizing now I need to do that. I have an epidural so I can't go to the bathroom. What do I do?” The nurse just told me, “You don't actually have to go. It'll happen probably when you're pushing. It happens to everyone. Don't worry about it.” I was trying to articulate that no, I have to do it. Meagan: I actually have to. Jacqueline: I'm going to do it on this bed if you don't get something to put under me. She wasn't listening to me and I was just going back and forth with her. My husband later told me that he thought I was loopy from whatever drugs they gave me, but long story short, I cleared space for the baby. My doula supported me in cleaning myself up and the nurses cleared everything away. They were actually surprised because they did not think that I actually had to go but I said, “I know my body even though I don't have 100% of my feeling. I know that I had to do this.” Then from that point, I kid you not. It was maybe 15 minutes later. I was told that I was 10 centimeters. They had gotten me back ito the flying cowgirl position after I cleared out everything and I just felt like I needed to go again. I said, “I feel a lot of pressure.” At this point, actually my epidural had stopped working. I started out feeling some contractions on the left side of my leg which spread and I could feel everything pretty well. I wasn't mad at it because I wanted to be able to feel my contractions when I was pushing anyway so it was kind of the best of both worlds. I had gotten about an hour and a half to rest and let my body regain some energy then I could feel everything again. It ended up being what I wanted. I was telling my doula, feeling this pressure again, feeling like I had to poop, and the nurses got this look on her face like, “Is she crazy and does she have to go again or is this the real deal?”One of them looked and I declined a cervical check again. I said, “I'm sure if it's happening, you'll see a head.” They said, “Okay, we need Dr. Tam to come back in.” She came and she said, “I need to do a cervical check again.” I said, “No. I don't want one.” I was feeling contractions fully at this point. I said, “I'm feeling too much pain. I don't want a cervical exam. I'm not doing it.” She stood there and waited for about 15 minutes and she was like, “I really need to check you because I can see that things are progressing and I think you're in transition.” I just huffed, “Okay, fine.” I let her do a cervical check and she said, “You're 10 centimeters and it's time to start pushing.” I said, “I'm not ready to start pushing.” I did not feel like he was in the position to start pushing yet. They all just sat there. They called my midwife back in. She fortunately was just at her car about to leave. She ran back inside. By the time I felt ready, she was on one side and my doula was on the other side of me. They asked me what position I wanted to be in. I tried with side-lying. My OB was also very supportive of that and I think if you're a person with a disability advocating for the position that you're most comfortable with is very important. The only piece of advice I would have for anyone who planned for an unmedicated birth is to have your plan B if your plan does change in the moment and you decide you want an epidural. That was the one thing and as a doula, I should have known better, that I did not do was prepare other positions that would be aligned with an epidural. I really only in the moment could think of side-lying. When it wasn't as effective as they wanted to see after a few pushes, they recommended, “Okay, let's try on your back.” Because I was just in the zone, I agreed. I had my doula on one side and my midwife on the other side then Dr. Tam was in front of me and my husband came and joined me on the side. I really just focused on my breathing. I initially started out holding his hand. At some point, I let go and hung on to the sides of the bed which gave me some momentum. I found it gave me also that sense of control as well which I found very beneficial as a survivor and also as someone who wanted to feel in control of their birth. I didn't really listen to what anyone was saying in terms of, “Okay, keep pushing. Push, push, push,” or timing things out. I just pushed when I felt like I had the sensation to push and stopped when I felt like I need to take a break. My midwife was telling me when I needed to soften my legs and my doula was on the other side. She was going through deep breathing and I was following her in those deep breaths. I had my eyes closed the entire time and Dr. Tam and her attending came in at some point and was another voice I had never heard before but my eyes were shut. I was just focused. They were all being very encouraging and they shared with me when his head came out. He was much bigger than anyone had told me. I did a scan at 37 weeks and was told that he would be around 6 pounds. He ended up being 8 pounds, 11 ounces so they were a little off, but everyone in those final moments helped really guide me through that process in a very empowering environment and we had very minimal interventions to get him out. He came out all on his own and it was just a beautiful experience getting through that last chapter of my birth. Yeah. We had him placed right on my chest and it was just a very, very empowering, beautiful VBAC which was exactly what I was hoping for. Meagan: Aw, thank you so much for sharing that. Huge congrats. Jacqueline: Thank you. Meagan: Oh my gosh. I'm so glad that you were able to advocate for yourself through that journey too. Through every journey, you were advocating for yourself and even in some moments when you were like, “Okay, I'll do that.” I think that really speaks to sometimes how labor is. You don't have to ever say, “Okay” if you don't want to, but getting the education, feeling comfortable, and sometimes saying no a few times, then maybe later you are okay with it. It's really important to know that your opinion can change as long as it's your opinion that is changing. Jacqueline: Exactly. As long as you come into it from an informed perspective and not being afraid of asking your providers why something needs to be done is very key as well. For someone who is living with a disability, I'd say that when it comes to your birth, envision what you want for your postpartum experience as well and allow your birth to inform that next chapter. In my birth process, I wasn't necessarily thinking, Healthy mom, healthy baby throughout the entire experience. Of course, that's obviously what you want, but I was also thinking, How will this next step influence what my postpartum experience will be like? I think that's very important. Meagan: Yeah, very, very important. How will this answer or next step impact me moving forward? I love that you talked about postpartum specifically too because you have a prolonged postpartum. How was this postpartum? Did you bounce back a little faster? How did it differ? Jacqueline: It was so different. Even far better than I could have imagined for myself. Largely, I think that was due to the chiropractic care that I was receiving, going for the acupuncture, and going for the massage. My body was just so ready to not only give birth but also to support me in my postpartum journey. I did feel the effects of pushing on my back. My pelvis locked up very intensely after but I didn't freak out or panic. I just called my team at The Wellness Hub and explained that I would need a very gentle assessment and they had me in within the first few days of returning home so I would have more mobility and that really helped with my postpartum experience as well was having that mobility back. Build your care team that will not only support you in your pregnancy but also in your postpartum as well. That goes for everyone and not only moms with a disability. Meagan: Yes, absolutely. I really think that when it comes to birth, investing in ourselves and our birth and our postpartum experience can be hard naturally sometimes as moms. We put ourselves last because we are taking care of kids and partners and all of the things, but doing those things like chiropractic care, acupuncture, massage, pelvic floor therapy, and all of these things– hiring a doula, hiring a birth team– these are things that may have a cost but really, you deserve it. You deserve it. In the end, are you regretting anything that you did? Jacqueline: No. I was doing all of the things to try and induce my labor which afterward, I thought, I spent all of this money. It took so long. Then I stopped myself from those negative, intrusive thoughts and thought, Do you know what? You got your natural labor that you wanted. You had your VBAC. Your body has quite literally- it took me about one week to start feeling like myself. I had no tearing either. I just felt like all that preparation was not for nothing. I think if you invest in your knowledge and your physical being, it's never a waste. You can't take care of anyone unless you take care of yourself. Meagan: 100%. It always comes back to the airplane analogy for me where they are like, “Hey, you have to put your own oxygen mask on before you take care of other people if the plane is crashing. You really do. You have to invest in yourself and take care of yourself.” Really quickly, I just want everyone to know that I have a PDF that we‘re going to include in the show notes. It's called “Practical Notes for Anesthetic Management for a Dystrophy Patient”. I'm going to put that pdf here in the show notes. If you do have a muscular dystrophy– oh my gosh. Jacqueline: Dystrophy. Meagan: I feel like I'm saying it funny. Dystrophy condition whether it's more severe or less severe or whatever, it might be something that helps you and take that note. If you're going to need an epidural, make sure they know so you can talk over what's okay and what's not okay. I'll have that in the show notes for you. It's a PDF easily readable and it's got all of the stats and studies noted along the way. Okay, thank you so much again for sharing your story. I'm so grateful for you and for reaching out. Congrats again. Jacqueline: Thank you so much for having me. ClosingWould you like to be a guest on the podcast? Tell us about your experience at thevbaclink.com/share. For more information on all things VBAC including online and in-person VBAC classes, The VBAC Link blog, and Meagan's bio, head over to thevbaclink.com. Congratulations on starting your journey of learning and discovery with The VBAC Link.Support this podcast at — https://redcircle.com/the-vbac-link/donationsAdvertising Inquiries: https://redcircle.com/brands

Welcome back to part two. Today, we are diving deep into a transformative discussion with the one and only Peter Diamandis—a pioneer in space exploration, innovation, and disruptive thinking. In this episode, Peter and Tom explore the groundbreaking policies and cultural shifts that have revolutionized companies like Amazon and Microsoft, ensuring they stay ahead in a rapidly changing world.We'll examine the immediate impacts of COVID on business models, the revolutionary advances of OpenAI, and the stunning prospects of AI in healthcare and longevity. From predicting AI reaching human-level intelligence by 2029 to the ethical dilemmas and societal shifts AI will bring, Peter and Tom leave no stone unturned.Have you ever wondered about living forever or what nanotechnology could mean for manufacturing and societal values? Or perhaps you're curious about how AI could redefine personal and professional relationships, even to the point of creating deeply empathetic and tailored companions? We'll cover that and more in today's episode.Listen in as we discuss the future of education, entrepreneurship, and the potential for a post-capitalist society driven by abundant resources. From contemplating living in a simulation to the next big health revolution, Peter Diamandis reveals insights that challenge our current perceptions and inspire groundbreaking innovation.02:04:29 Shift from random drug discovery to design.02:09:04 Optimistic vision for personalized medicine and technology.02:24:17 Ego impedes progress; focus on right answers.02:40:38 Questioning reality, considering life as simulation.02:54:31 AI and longevity key in global markets.03:09:56 $101 million X Prize for FSHD research.03:27:17 DMT journey: dissolution of ego, universe connection.03:50:05 Proper OKRs expose talent, allow autonomy, unify.SPONSORS:Head to https://netsuite.com/THEORY for Netsuite's one-of-a-kind flexible financing program for a few more weeks! For comprehensive financial news and analysis, visit https://yahoofinance.comVisit https://betterhelp.com/impacttheory to get 10% off your first month Explore the Range Rover Sport at https://landroverusa.comGet 5 free AG1 Travel Packs and a FREE 1 year supply of Vitamin D with your first purchase at https://drinkag1.com/impact.Secure your digital life with proactive protection for your assets, identity, family, and tech – Go to https://aura.com/IMPACT to start your free two-week trial.Take control of your gut health by going to https://tryviome.com/impact and use code IMPACT to get 20% off your first 3 months and free shipping.FOLLOW TOM:Instagram: https://www.instagram.com/tombilyeu/Tik Tok: https://www.tiktok.com/@tombilyeu?lang=enTwitter: https://twitter.com/tombilyeuYouTube: https://www.youtube.com/@TomBilyeuWhat's up, everybody? It's Tom Bilyeu here. If you're serious about leveling up your life, I urge you to check out my new podcast, Tom Bilyeu's Mindset Playbook —a goldmine of my most impactful episodes on mindset, business, and health. Trust me, your future self will thank you.LISTEN AD FREE + BONUS EPISODES on APPLE PODCASTS: apple.co/impacttheory Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Welcome back to part two. Today, we are diving deep into a transformative discussion with the one and only Peter Diamandis—a pioneer in space exploration, innovation, and disruptive thinking. In this episode, Peter and Tom explore the groundbreaking policies and cultural shifts that have revolutionized companies like Amazon and Microsoft, ensuring they stay ahead in a rapidly changing world. We'll examine the immediate impacts of COVID on business models, the revolutionary advances of OpenAI, and the stunning prospects of AI in healthcare and longevity. From predicting AI reaching human-level intelligence by 2029 to the ethical dilemmas and societal shifts AI will bring, Peter and Tom leave no stone unturned. Have you ever wondered about living forever or what nanotechnology could mean for manufacturing and societal values? Or perhaps you're curious about how AI could redefine personal and professional relationships, even to the point of creating deeply empathetic and tailored companions? We'll cover that and more in today's episode. Listen in as we discuss the future of education, entrepreneurship, and the potential for a post-capitalist society driven by abundant resources. From contemplating living in a simulation to the next big health revolution, Peter Diamandis reveals insights that challenge our current perceptions and inspire groundbreaking innovation. 02:04:29 Shift from random drug discovery to design. 02:09:04 Optimistic vision for personalized medicine and technology. 02:24:17 Ego impedes progress; focus on right answers. 02:40:38 Questioning reality, considering life as simulation. 02:54:31 AI and longevity key in global markets. 03:09:56 $101 million X Prize for FSHD research. 03:27:17 DMT journey: dissolution of ego, universe connection. 03:50:05 Proper OKRs expose talent, allow autonomy, unify. SPONSORS: Head to https://netsuite.com/THEORY for Netsuite's one-of-a-kind flexible financing program for a few more weeks!  For comprehensive financial news and analysis, visit https://yahoofinance.com Visit https://betterhelp.com/impacttheory to get 10% off your first month  Explore the Range Rover Sport at https://landroverusa.com Get 5 free AG1 Travel Packs and a FREE 1 year supply of Vitamin D with your first purchase at https://drinkag1.com/impact. Secure your digital life with proactive protection for your assets, identity, family, and tech – Go to https://aura.com/IMPACT to start your free two-week trial. Take control of your gut health by going to https://tryviome.com/impact and use code IMPACT to get 20% off your first 3 months and free shipping. ***Are You Ready for EXTRA Impact?*** If you're ready to find true fulfillment, strengthen your focus, and ignite your true potential, the Impact Theory subscription was created just for you.  *New episodes delivered ad-free, EXCLUSIVE access to hundreds of archived Impact Theory episodes, Tom AMAs, and so much more!* This is not for the faint of heart. This is for those who dare to learn obsessively, every day, day after day. *****Subscribe on Apple Podcasts: https://apple.co/3PCvJaz***** Subscribe on all other platforms (Google Podcasts, Spotify, Castro, Downcast, Overcast, Pocket Casts, Podcast Addict, Podcast Republic, Podkicker, and more) : https://impacttheorynetwork.supercast.com/ Learn more about your ad choices. Visit megaphone.fm/adchoices

Welcome to another thought-provoking episode of Impact Theory with your host Tom Bilyeu. Today, we are diving deep into a transformative discussion with the one and only Peter Diamandis—a pioneer in space exploration, innovation, and disruptive thinking. In this episode, Peter and Tom explore the groundbreaking policies and cultural shifts that have revolutionized companies like Amazon and Microsoft, ensuring they stay ahead in a rapidly changing world.We'll examine the immediate impacts of COVID on business models, the revolutionary advances of OpenAI, and the stunning prospects of AI in healthcare and longevity. From predicting AI reaching human-level intelligence by 2029 to the ethical dilemmas and societal shifts AI will bring, Peter and Tom leave no stone unturned.Have you ever wondered about living forever or what nanotechnology could mean for manufacturing and societal values? Or perhaps you're curious about how AI could redefine personal and professional relationships, even to the point of creating deeply empathetic and tailored companions? We'll cover that and more in today's episode.Get ready to rethink what's possible and glimpse into a future shaped by technology, science, and an unwavering commitment to human progress. Join us on Impact Theory for a journey into the extraordinary possibilities of tomorrow with Peter Diamandis.00:00 Quantum computer, fusion energy, manifesting dreams. Future filmmaking.29:36 AI's intimate knowledge will build extraordinary relationship.46:18 Cells evolved into meta intelligence through technology.58:06 Desire to freeze climate and evolution, merge with technology.01:13:20 Future world: AI, sensors, data, fashion trends.01:24:54 Life's growth, abundance leads to self-expression.01:44:14 AI learning DNA language, predicting outcomes, epigenome importance.02:04:29 Shift from random drug discovery to design.02:09:04 Optimistic vision for personalized medicine and technology.02:24:17 Ego impedes progress; focus on right answers.02:40:38 Questioning reality, considering life as simulation.02:54:31 AI and longevity key in global markets.03:09:56 $101 million X Prize for FSHD research.03:27:17 DMT journey: dissolution of ego, universe connection.03:50:05 Proper OKRs expose talent, allow autonomy, unify.SPONSORS:Head to https://netsuite.com/THEORY for Netsuite's one-of-a-kind flexible financing program for a few more weeks! For comprehensive financial news and analysis, visit https://yahoofinance.comVisit https://betterhelp.com/impacttheory to get 10% off your first month Explore the Range Rover Sport at https://landroverusa.comGet 5 free AG1 Travel Packs and a FREE 1 year supply of Vitamin D with your first purchase at https://drinkag1.com/impact.Secure your digital life with proactive protection for your assets, identity, family, and tech – Go to https://aura.com/IMPACT to start your free two-week trial.Take control of your gut health by going to https://tryviome.com/impact and use code IMPACT to get 20% off your first 3 months and free shipping.FOLLOW TOM:Instagram: https://www.instagram.com/tombilyeu/Tik Tok: https://www.tiktok.com/@tombilyeu?lang=enTwitter: https://twitter.com/tombilyeuYouTube: https://www.youtube.com/@TomBilyeuWhat's up, everybody? It's Tom Bilyeu here. If you're serious about leveling up your life, I urge you to check out my new podcast, Tom Bilyeu's Mindset Playbook —a goldmine of my most impactful episodes on mindset, business, and health. Trust me, your future self will thank you.LISTEN AD FREE + BONUS EPISODES on APPLE PODCASTS: apple.co/impacttheory Learn more about your ad choices. Visit megaphone.fm/adchoicesSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Welcome to another thought-provoking episode of Impact Theory with your host Tom Bilyeu. Today, we are diving deep into a transformative discussion with the one and only Peter Diamandis—a pioneer in space exploration, innovation, and disruptive thinking. In this episode, Peter and Tom explore the groundbreaking policies and cultural shifts that have revolutionized companies like Amazon and Microsoft, ensuring they stay ahead in a rapidly changing world. We'll examine the immediate impacts of COVID on business models, the revolutionary advances of OpenAI, and the stunning prospects of AI in healthcare and longevity. From predicting AI reaching human-level intelligence by 2029 to the ethical dilemmas and societal shifts AI will bring, Peter and Tom leave no stone unturned. Have you ever wondered about living forever or what nanotechnology could mean for manufacturing and societal values? Or perhaps you're curious about how AI could redefine personal and professional relationships, even to the point of creating deeply empathetic and tailored companions? We'll cover that and more in today's episode. Get ready to rethink what's possible and glimpse into a future shaped by technology, science, and an unwavering commitment to human progress. Join us on Impact Theory for a journey into the extraordinary possibilities of tomorrow with Peter Diamandis. 00:00 Quantum computer, fusion energy, manifesting dreams. Future filmmaking. 29:36 AI's intimate knowledge will build extraordinary relationship. 46:18 Cells evolved into meta intelligence through technology. 58:06 Desire to freeze climate and evolution, merge with technology. 01:13:20 Future world: AI, sensors, data, fashion trends. 01:24:54 Life's growth, abundance leads to self-expression. 01:44:14 AI learning DNA language, predicting outcomes, epigenome importance. 02:04:29 Shift from random drug discovery to design. 02:09:04 Optimistic vision for personalized medicine and technology. 02:24:17 Ego impedes progress; focus on right answers. 02:40:38 Questioning reality, considering life as simulation. 02:54:31 AI and longevity key in global markets. 03:09:56 $101 million X Prize for FSHD research. 03:27:17 DMT journey: dissolution of ego, universe connection. 03:50:05 Proper OKRs expose talent, allow autonomy, unify. SPONSORS: Head to https://netsuite.com/THEORY for Netsuite's one-of-a-kind flexible financing program for a few more weeks!  For comprehensive financial news and analysis, visit https://yahoofinance.com Visit https://betterhelp.com/impacttheory to get 10% off your first month  Explore the Range Rover Sport at https://landroverusa.com Get 5 free AG1 Travel Packs and a FREE 1 year supply of Vitamin D with your first purchase at https://drinkag1.com/impact. Secure your digital life with proactive protection for your assets, identity, family, and tech – Go to https://aura.com/IMPACT to start your free two-week trial. Take control of your gut health by going to https://tryviome.com/impact and use code IMPACT to get 20% off your first 3 months and free shipping. ***Are You Ready for EXTRA Impact?*** If you're ready to find true fulfillment, strengthen your focus, and ignite your true potential, the Impact Theory subscription was created just for you.  *New episodes delivered ad-free, EXCLUSIVE access to hundreds of archived Impact Theory episodes, Tom AMAs, and so much more!* This is not for the faint of heart. This is for those who dare to learn obsessively, every day, day after day. *****Subscribe on Apple Podcasts: https://apple.co/3PCvJaz***** Subscribe on all other platforms (Google Podcasts, Spotify, Castro, Downcast, Overcast, Pocket Casts, Podcast Addict, Podcast Republic, Podkicker, and more) : https://impacttheorynetwork.supercast.com/ Learn more about your ad choices. Visit megaphone.fm/adchoices

"You're messing with the wrong guy!!!!" We expand a bit more on the utility of the FSHD-like pig model and then discuss the science behind and implications of p38 inhibition for FSHD. --- Send in a voice message: https://podcasters.spotify.com/pod/show/peter-l-jones/message

Chip Wilson, the creator of Lululemon and SOLVE FSHD, stands as a pioneer, business innovator, philanthropist, and a person affected by a rare disease. His passion for fitness led him to build a successful career in designing athletic wear, but a diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD), a degenerative muscle condition, altered his active lifestyle.On This Episode We Discuss:0:46 Working on the Alaska Oil Pipeline as a 17-year-old4:30 Saving money young and becoming an entrepreneur7:05 Following trends and founding Lululemon8:36 Chip's initial dream and vision for Lululemon11:45 Combining Italian design ethics with quality western fabrics for an amazing Lulu product 14:20 The feeling of leaving the Lululemon Board of Directors 17:00 The takeaways from Joseph Heller's Catch 22 and Something Happened 24:15 Reading the top 100 biographies and admiring those with integrity 33:44 Using the culture of an organization and leadership as a strategic advantage 38:18 Facioscapulohumeral muscular dystrophy (FSHD) 40:05 Chip on losing muscle when exercise and movement is so necessary for his way of life 44:27 Climbing Mount Kilimanjaro with FSHD 46:58 Chip's advice to those suffering from rare diseases and their caregivers 49:24 What progress that has been made to find a treatment for FSHD 52:35 Why Chip and SOLVE FSHD donated to help fund the funded the laboratory at n-Lorem

Hayden Martin is a living, breathing inspiration to everyone he encounters. Diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) at six years old, Hayden did not begin to experience symptoms until he was twelve. While his body underwent significant change as a teen, his mind, soul, and spirit grew stronger. The phrase adapt and overcome has never been more appropriate to describe a human being. In this episode, Hayden opens up about the importance of authentic community in his life and encourages us all, limited and able-bodied alike, to invest our time, effort, and energy in one another. He shares about his freelance work as a writer and the work he is doing as an adaptive outdoorsman through his Westlake Outfitters project. We invite you to kick back, relax, and listen in on a conversation between friends! #livesimplylovemuch

In sports and life, there comes a time when you must pivot. Play-By-Play Sports Announcer for the Brooklyn Nets, Chris Carrino shares his journey living with facioscapulohumeral muscular dystrophy (FSHD).    After being diagnosed with the debilitating disorder while in college, Chris describes how FSHD has impacted his adult life. He describes his adjustment to the physical challenges of FSHD and reveals how it impacted his career. Later he shares how his wife, family, and friends have cared for him “in sickness and in health.” Tell Janice who made your Dean's List! Follow Janice on Twitter: @janicedean   Learn more about your ad choices. Visit megaphone.fm/adchoices

ONCE UPON A GENE - EPISODE 146 When Your Career and Personal Life Collide - VP of Medical and Science Strategy and Head of Syneos Health's Rare Disease Consortium FSHD Rare Dad - Raymond Huml Ray Huml and his wife have two kids with Facioscapulohumeral Muscular Dystrophy (FSHD). He's an author, Vice President of Medical and Scientific Strategy and Head of the Rare Disease Consortium at Syneos Health Clinical Solutions. EPISODE HIGHLIGHTS As a family, how do you navigate metal health? We've decided as a family to take what's not good and make it good. We reach out to the professionals we need to for mental and physical health. My dad used to say we're all composed of body, mind and spirit and they're all interwoven, so you have to address all aspects.  How do you find patients to participate in clinical trials? There has to be a compelling argument for why a person should participate in a clinical trial. I lobby heavily in the FSHD Society to develop ICD-10 codes for Muscular Dystrophy, including FSHD, so patients can be tracked. That provides a digital footprint of identifiable patients with a diagnosis. With HIPPA rules, you can't contact patients directly, but the data can be used to know how many patients there are.  What advice do you have for patient advocacy groups to get ICD-10 codes approved? Be persistent and advocate for each rare disease individually so it's more easily differentiated and tracked. How have things changed for you as a caregiver as your children have grown into adults and gone away to college? We've changed our life in order to support them, traveling often to help how we can, encouraging them and staying connected.  CONNECT WITH RAY Email: raymondhuml@gmail.com or raymond.huml@syneoshealth.com LINKS & RESOURCES MENTIONED Global Genes Patient Advocacy Summit https://globalgenes.org/event/rare-patient-advocacy-summit/ FHSD Society  https://www.fshdsociety.org/ Accelerating Rare Disease Drug Development: Lessons Learned from Muscular Dystrophy Patient Advocacy Groups https://link.springer.com/article/10.1007/s43441-020-00221-4 Parent Project Muscular Dystrophy https://www.parentprojectmd.org/ Accelerating Rare Disease Research by Listening to the Patient Voice https://www.syneoshealth.com/insights-hub/incorporating-the-patient-voice-into-the-rare-disease-drug-development-paradigm Muscular Dystrophy Association https://www.mda.org/ Books by Raymond Huml https://www.amazon.com/s?i=stripbooks&rh=p_27%3ARaymond+A.+Huml&s=relevancerank&text=Raymond+A.+Huml&ref=dp_byline_sr_book_1 TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Once Upon a Gene TV https://www.thedisordercollection.com/

Episode Notes On episode 298 of Disability After Dark, I sit down with Zee as we explore the nuances of being disabled in your 20s with FSHD, a form of Muscular Dystrophy. We also chat about how they navigate identity, disability joy and grief, poetry around disability, non-binary + queerness and so much more.  This one was really, really good. Enjoy!  You can follow Zee at these IG handles  instagram.com/@zeezelinski  instagram.com/@the.beautiful.gods   Apply now to be on Disability After Dark, This Shit Is Real or other fun episodes by e-mailing disabilityafterdarkpod@gmail.com or going to this link: https://calendly.com/disabilityafterdarkpod/disabilityafterdark  Support Bump'n and donate so everyone can access self-pleasure by going to  www.getbumpn.com  Hire Kristen Williams for disability centric therapy by e-mailing kristen.williams10@gmail.com  You can buy DISABILITY AFTER DARK themed MERCH HERE.  Support Disability After Dark on Patreon at patreon.com/disabilityafterdark

Chris Carrino is the longtime voice of the Nets. He also broadcasts the NFL and has a very impressive resume. On today's episode we talk about his career and his disease called facioscapulohumeral muscular dystrophy, or FSHD. Chris's story is amazing and an inspiration to all. He is truly a remarkable individual and someone who has the correct perspective on life! Learn more about your ad choices. Visit megaphone.fm/adchoices

Johannes Mallow was 14 when he contracted the muscle disease, FSHD. His physical strength began to erode until he would no longer leave his apartment for fear of collapsing. It was not until he discovered memory sports that he found the motivation to get himself a wheelchair and begin training his mind, with the intention of becoming the world champion. See acast.com/privacy for privacy and opt-out information.