#1 Way to Find Confidence Within When You Have Low Self- Esteem with Victoria Jackson

27:58Did you find or discover anything or hear anything? And on top of that, did the pillowcase rapist go to prison as well? Yes. The pillowcase rapist was finally caught in prison and he's no longer with us. He's gone. Thank goodness. No sadness around that for me. So, yeah, going to the jails, you really see, I mean, there were times that I would go because after going 20 years and going, you know, every other month, that's a lot of visits and you hear a lot of different people's stories. and I remember going at times where there was a mom, a daughter, and a grandmother. They were all there. And it was just like, wow, how does this happen?

28:39And so there was a lot of stories in my mind, too, because I didn't want to judge. I had to make everybody be like, everyone's here as a drunk driver. You're sort of like, I wanted to equalize the room so that even though you're maybe seeing the teardrops at the end of somebody's eyes of maybe what they've done in life, I didn't want to judge. I wanted to just stay to my message, which I could see that doing these makeovers and people seeing themselves differently, especially women who had maybe tattooed like crazy eyebrows or whatever it was that had really sort of changed them into just somebody that they looked different, but who they were inside was very different.

29:26I wanted to get to that. And I wanted them to feel that, you know, you may be in jail today, but, you know, when you get out tomorrow or when you get out, you know, there's a whole new world out there and there can be a whole new you out there. And that was that really took on the life of of the power of mascara. And obviously it was never about selling them my cosmetics or anything like that, because I'm very much for women and whatever makeup they like. Yeah, absolutely. Absolutely. No, and I think it's incredible how much our appearance does affect our confidence. And I've seen it. There are so many of these great videos on social media of a lot of hairdressers and barbers going onto the streets and doing free cuts for the homeless.

30:12And you hear their reaction. I've seen some of these videos where you hear their reaction before and after and how they feel about looking at themselves in the mirror and how it can be such a boost for confidence as well. And so that definitely resonates. How did it go from being your passion and something that you are so connected to as a way of helping people build self-esteem to then becoming a very successful business? There's lots of steps in between. What were some of the key things you think transformed it from a great small business to something quite successful? Well, I think basically it's really in the world of the no makeup makeup, nothing existed, you know, and especially so you think about in, you know, when you're in the jails.

31:02Again, I was trying to strip down people to the essence of who they were. And to me at the core of that is this no makeup makeup. That's really. And so there was nothing in the world of, say, foundations at the time that would be kind of the starting point for that. That to me was going to be what I built my business around and became, you know, I created over 600 products over the course of 13 years. But my foundation, which I sold millions, millions of units of, was just based on more natural looking skin tone shades that look like you didn't have layers of makeup on. So that really came from not only the jobs that I was doing, but from all those years of going to the jails and really wanting to help women look like themselves and not, you know, pile on all the makeup.

31:53So when I said as I was making these shades and pots and pans in my garage, I had to find a cosmetic chemist. You know, like at the time you're looking in the yellow pages. Nobody out there knows what the yellow pages are. That's a directory. Yeah, there's great ads. You used to climb on them during Christmas. Exactly. And you're going and I found a cosmetic chemist and said, hey, you know, I want to, this is what I want to do. I want to create these shades, these textures, these feels. And I started. And then while I, again, wanting to teach what I do and never having graduated or gone to college, I thought, you know what?

32:30I want to teach this. I'm going to call UCLA. They have an extension program. maybe I could teach some of what I'm doing as a Hollywood makeup artist and teach that. And I did that for 10 years as an extension course that was, again, sold out every quarter. People wanted to learn how to do it, whether it was I had so many men taking it, you know, guys that maybe just wanted to meet gals, you know, and do their makeup. But it was another way that I could just see people wanted to connect in this way. So I thought, this is great. And then through doing that at UCLA, one of my students actually said, you know, I know this group of guys that are selling products through television.

33:17And I said, wow, I think I have a great idea of how to sell products through TV, color cosmetics, which no one was doing at the time because this is the late 80s. and I hadn't really perfected my kit, but, you know, we do that little bit of that fake it till you make it and act as if. So when she put me together with the guys, I basically said, I have this idea for these color kits, you know, peach, pink, and red, and I'll put all of the colors and products and things you need together. And then I'm going to teach you how to do it. And, um, basically that long story short, they decided to roll the dice on that and shoot an infomercial.

33:55And the very first infomercial I did with two celebrities at the time, Ali McGraw and Lisa Hartman, we started doing a million dollars a week in sales. I mean, clearly there was an appetite for women wanting to know how to do their makeup and feeling that confidence and reassurance that I tried to give in my three-hour tutorials that you never see now. that's incredible that's that's amazing and uh did you find that building this business and helping these people and helping your customers but also women that you met in the prisons did that help how you felt about yourself and what you'd been through or was there not a correlation was healing a part of that or was healing having to happen separate yeah healing is a part of everything i think we all just you know healing happens whether sometimes we even know it or not It's on like a cellular level.

34:52So, you know, it's whatever piece of what you're doing at the time. I've gone through so many different stages of healing because I've gone through so many different experiences. As I said, you know, as my life has gone from like what I look at in the two parts, you know, the mascara to medicine. So it's all, all of that journey has informed me and my healing in so many different ways. did you find that you were saying that your experience made you rush into not wanting to be alone and obviously got married very young did you find that led to some codependency which caused challenges in relationships or did you actually was that something that you feel your partner was good at navigating and dealing with because I can imagine that when you don't want to be alone.

35:41And of course, based on the traumatic experience that you had, it's very valid. But I wonder how that affects the other person as well and how you navigated that, especially in the early years. Well, I think it started even earlier because I had, you know, as I said, my parents had a lot of problems together and my biological dad put me up for adoption when I was nine years old. So my stepdad had adopted me. And so I really, very early on, I'd say really never felt, you know, how to have a relationship, especially with a father, with a man and the fact that I'm now married, this is my third time.

36:17So yeah, I'd say, did I have codependent problems and being frightened and, you know, being afraid to be alone definitely created issues because I was afraid and I was still trying to figure out me. And so I'd definitely say that's been a theme. And even now, I've worked really hard, you know, and especially in raising three kids, you know, when you have your first child, you really have to think about all of your own stuff. And there were times where I always say, you know, I didn't just hang my hat on my son, I hung my wardrobe, you know, I mean, you bring a lot of your stuff. So it's been really a conscious thing.

37:01And I think for all of us thinking about how the past informs us of what we bring to the table and how we have to navigate our relationships, our love relationships and all of our family relationships, and it can be really challenging and you can become the quote unquote identified patient and how you sort of navigate that in your world, in your life. I've often spoken to doctors today and experts and they talk about how much we need to look at our genetic past and our history and our family of health. And it's so interesting how on the physical level that's true and it's true on the emotional level as well.

37:44But sometimes it can be so hard to look at the emotional background of our family and how it's affected us because a lot of us go through life believing that our parents are super human in the beginning. Some of us feel that way for a long, long, long time. And it's almost like the earlier we've recognized that our parents are humans, just like we are, and we all have challenges and flaws, that sometimes the healthier conversations and connection we can have with them as well your journey with your children has been a labor of love in so many ways and i want to talk about ali who i had the pleasure of meeting who you know is your co-author on this book yes and has been at the core of your journey and connection to the medical world from mascara to medicine and looking into that world for you as you said earlier you were like I didn't really feel like I was loved in that way walk me through what it feels like when your daughter who you love so deeply gets diagnosed with an illness that is very rare and on top of that you hear she doesn't have very long to live I just can't imagine I'm not a parent but I can't imagine and therefore I I can't imagine what that feels like.

39:10Can you walk us through what that moment feels like when you've raised someone for, I think, what, 14 years? Yeah, I mean, my life changed. My life changed when Allie was, you know, I have three children. And when Allie was diagnosed at 14, you know, we're completely healthy, fine. And, you know, we're going to a premiere. I remember a premiere of a movie. we're going to go see something. And she's saying she has an eyeball headache. And I'm thinking, oh, you know, okay, you know, and she says her vision's getting a little fuzzy. And I'm just thinking, well, I'm, you know, I'm sure it's nothing.

39:48We'll go see the eye doctor, we'll get you some drops. And, you know, you don't think anything of it. And then all of a sudden, I find out through going through to the eye doctor, that he does, she does an exam and says that she's got this optic neuritis and we need to find out optic neuritis is the swelling of the optic nerve and we need to find out what's going on and go to an opthoneurologist and find out that you know and now I'm going he's saying you've got to go to a neurologist and ultimately the neurologist is taking a series of doing a series of tests wanted to do a spinal tap a lumbar puncture and I'm like why?

40:28Like, she's just got something going on with her eyes. What are y 'all doing? You know? And it was really scary. And he's decided he's going to do some blood work, the neurologist, and he starts checking boxes. And one of the boxes they check is for something called neuromyelitis optica. And I said, Oh, what is that? And he goes, Oh, don't worry about it. That would be a nightmare. She's not going to have that. I don't even know why I've ever checked that box. And of course, you know how that goes, check that box. And it turned out that That's what Allie had. And so when they called with the results, they basically told myself and my husband that she had four years to live.

41:05And it was just life changed. Life changed. In my mind right then, I said, okay, well, I'm closing. At that point, I had a billion-dollar empire of my cosmetic world. I'm closing that book, and I'm going to open the book on medicine. And here I am. I make lip gloss. I can cure disease. Yeah, right. But I was going to do it. I was going to find the way and save my daughter because it was just, I mean, it takes you to your knees. It takes you to the floor. It just, the air goes out of the room. You know, you're just like, you don't even know where to begin. And you literally just have to start somewhere.

41:50And that's where I just thought in that moment, that was my purpose. Everything came back to me. The disassociating while, you know, the rape was happening. I was like, oh, oh, this is it. This is why I'm here. I'm supposed to cure this. And it was just like that just became the mission from that moment. Parking shouldn't slow you down. ParkWiz gives every driver a shortcut. Book ahead, save up to 50%, and skip the hassle of circling the block. Park smarter, park faster. ParkWiz. Download the ParkWiz app today and save every time you park. Stop settling for weak sound. It's time to level up your game and bring the boom.

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43:15Featuring the iconic journalist of Variety and hosted by co-editor-in-chief Cynthia Littleton. The only constant in Hollywood is change. Open your free iHeartRadio app, search Daily Variety, and listen now. For you in that moment, it sounds like all of your pains really became your purpose. And that can sometimes be the hardest path to purpose because there are several different paths. there's passion, there's a profession, there's people you love. But then when it's your pain, your pain of seeing your child suffer and getting news like that, what was useful from your cosmetic background that did transfer over into healthcare and medicine?

44:04Or was it just like, none of this is useful and I need to build a different skillset? Because I can imagine that that transition is not easy mentally, emotionally, and of course, logistically. Yeah, it's not easy on any level, spiritually. I mean, you name it. What I drew upon more than anything was everyone, my whole career, my whole life has always said, oh, you know, even when I was starting my cosmetic company, oh, you can't do that. You know, there's a million cosmetic companies out there. So it was the, everyone up to that point always telling me I couldn't do it, that I was like, no, I can do this.

44:44I can do this. I didn't know how I was going to do this, but I thought, no, because as I said, and I really, it's all about for me, is what the power of love and intention, anything's possible. And I loved my daughter and I was going to set this intention. And I'd been able to manifest, you know, whether it's been through my creative of visualization. I see it in my head. I make the picture. And then I'm like, I'm going to work to create this. And I need to find this cure. And I'm going to be able to, I'm going to sit and ask all the questions I put together. The first thing I said to myself is I have to learn about this condition.

45:27I've got to educate myself. And there I cut to, you know, a group together and I went to Stanford and I started studying molecular medicine with a group of advisors to understand the process of this particular condition and really start learning and just sat there with a group of doctors and advisors that I would just pick from, they're in the world of MS or in lupus or rheumatoid arthritis and these other autoimmune diseases. And I just started saying, telling them my personal story. And of, you know, how can you help me? And, you know, basically, I was fortunate that I could say, I'm, I have a checkbook.

46:08And if you're willing to work the way I need you to all work, which was everyone was going to have to collaborate and work together and share information, because everybody said they don't do that in the medical world, I said, we're going to find a cure. And this is going to be a model for how we look at curing disease in the world. And I mean, I set it on a very big stage for myself. And, but the biggest thing was always to find a cure and at least find some therapeutics to help me as Ali was suffering at the time. What were some of the biggest roadblocks? You mentioned one of them there, collaboration.

46:46What were some of the biggest roadblocks you saw in healthcare in curing these seemingly incurable diseases? Because you went in there, of course, as you said, you'd worked hard, first of all, to build this incredible company. Therefore, you had resources. It's not like you just had resources because you inherited them or you had them somewhere else. But even with that, you had to learn, bring people together, figure it out. What were some of the blocks that you ran up against or that you saw that existed before you were able to create and curate your own team? I mean, the biggest thing is for me, I needed to get to people's brain trust.

47:25And I really need to do, the way I thought was in was through their shared humanity and sense of their own purpose, like always bringing it back to, well, why did you get into this? You know, why did you decide to be a doctor in the world of MS research or things? So that was the positive side. The reason I had to do that is because it was very clear to me very early on that people don't share or work together. They all wanted sort of their own spotlight for their findings or their published work. But in the world of rare disease, which I found out at the time, they were saying there was maybe 10 ,000 people worldwide that have this.

48:04Since my work, there's over a million people and counting that have this because it's so misdiagnosed, whether it's MS or other things. So I had to get people to work together and share. That was going to be the biggest obstacle. But because I had the power of at least having a checkbook and always feeling very blessed and fortunate for that, that I could say, I will pay. You tell me who you need to get in the room and at the table, but you're all going to work together and share together. So I'd say that was the biggest obstacle. And then finding people. And then honestly, what became more and more as I went down this and through this journey to cure anything, even in a rare disease, I had to, I found out that I had to build a blood bank.

48:52Now, can you imagine here's all of a sudden you're working to find your way with just getting researchers and scientists to the table, but it became quickly apparent to me that they said, Victoria, for us to do the research, we need to have blood specimens. We need the material to do this research. So I thought, wow, now I have to create a repository of blood bank and start collecting blood from patients when I'm hearing it's so rare. And when Allie was first diagnosed, I was trying to just find one person that had this. Now I have to amass an entire blood bank of specimens around the world. and that was seemingly, I thought, how do you start?

49:44How do you do that? How I did that. How do you do that? How do you do that? I hired a nurse that I said, I'm going to find where these patients are. I'm going to send this nurse with a little cooler. She would show up with a little cooler and she'd go to Alaska or she'd go anywhere, literally taking samples and bringing them back. That's how I started. I now have over 100 ,000 specimens in my own blood bank and biorepository that is used for drug companies. I mean, it's changed the whole landscape. But if somebody would have told me, honestly, Jay, that I would be like having to build a blood bank, that I'd be doing that.

50:26I mean, even early on when I was trying to get patients to just give their samples, I'd be like, how about if we do like blush for blood? You get a blush if you give me your blood because a lot, you know, are women. But you get creative and you think about that. And I knew that the biggest way that I could make the difference was getting all these people together in a room working in the same direction. Wow. I mean, that, you know, it's so inspiring because it's so, you've just had so many moments in your life that I think. it would be natural and it would be completely okay to give up and slow down and just accept.

51:14But you, and you also, I'm intrigued because when I've spent time with you and even today, it's not like you're fighting. It's almost like you're creating. And I don't know, I'd love to hear your thoughts on those two sentiments because often we think we have to fight to stay alive. You started by saying you've always been a survivor. Yeah. What do you think's core to surviving difficult situations? Is it fighting or is it creating opportunity or what is it? Um, you know, I've never looked at it as, for example, put in the, in the mix there, the thought of like being a victim. Like, so if you think of being a victim, you think more of fighting.

51:59So I don't think of myself as a victim or, you know, it was never like, oh, why is this happening to me? It was, I mean, I wish there's a lot of times, clearly I wish that I had not gone through a rape and gone through what I went through. And there's times that I was like, what would it have been like if I graduated high school and I went to college and all of that? But you know, that, that wasn't in the cards. That wasn't my journey or, but I've always tried to, I always try to zoom out and look at, you know, why is this? You know, what's the way in? Where can I? I always want to do something good and make the good come out of it.

52:42That's just how I've always been. And I want to find that way. And I genuinely always want to help in whatever it was, whether it was teaching women makeup, which is now, which is, you know, when I'm sitting there at the pharmaceutical company and showing them the path why they need to help all these people and how they can. And again, going through their brain trust to get them. I mean, think about having to get pharmaceutical companies. The fact that I got three drugs made, people say that never ever happens, let alone in a rare disease world. How passionate you have to be about what you're talking about and wanting to.

53:26So it's not really fighting for it. It's just helping people find it within themselves. That's what I do. I find that one piece, like what you do so beautifully, you find that thread, that thing that binds all of us, that sense of shared sense of humanity and that purpose. I had to find that purpose in the room for all those people. yeah well what did you end up so far what have you accomplished and how obviously I named some of it there but in the intro but could you explain what has been accomplished and what you're still pursuing so that we can just understand from a you know success point of view like when you've invented these three drugs and but what is yeah what have that what has that achieved what has that stopped and then what are you still trying to figure out so and i never and i i was helpful to get people that invented them because you know going to obviously genentech and where they really you know that's what they do um but now what i learned so i started to people are always going how are you doing this like like this this sounds crazy you're like making lip gloss and all of a sudden you're getting these drugs made like there's a there's a lot in between those that little journey there.

54:42And that's why I wrote The Power of Rare, a blueprint for medical revolution, which is really, this is, because there's other moms, dads, families that are, you know, going through stories like mine. And I said, I'm going to write down at least this is what I did, because people always want to know how you did it. I found the biggest magic was always bringing early on, I brought people together, I had, I brought together over, gosh, 40 countries together, and hundreds of researchers and scientists and patients together. So that's always been so critical in what I do. But what I'm doing now is so people have said, well, how have you done it?

55:23Look at what you've done. Look at autoimmune disease in general. Autoimmune disease right now, which is what, you know, Allie has. And yes, she's on a drug now that is more controlling things. But I decided as I listened to our president, which is great, he talks about cancer and moon shots, I thought, I want to do a cure shot, a cure shot. We don't need to go to the moon to start curing disease here. And autoimmune disease and cancer are opposite sides of the same coin. And I thought people started going, have you looked at what you're doing in the world of autoimmune disease, this particular one, using this as a blueprint for curing?

56:08a lot of other autoimmune diseases. So that's really what I'm passionate about now. And I have to say, I have an amazing team that supports me. I couldn't have gone through this journey without a Dr. Michael Yeaman, who's head of molecular medicine at UCLA. I mean, he's the scientist that, you know, we've gone everywhere from, you know, the Harvids to the Mayo to we're doing work with Verily at Google, looking at biomarkers. I mean, he's always by my side and probably one of the smartest people. So I'm very fortunate that I've put together a great team of people and they see how far we've come.

56:44So I'm actually looking at how this story ends is I'm going to like frigging be a big part in working and curing autoimmune disease around the world because, you know, Allie said early on in her journey and her journey is really for her to talk about, but she said, mom, this isn't just about you and me anymore. And that was a turning point. It was like, you're right. It's not. And when I see now all the patients and the parents and I just feel if my voice can help give voice to other people, this is what I'm doing. And for our viewers and for our listeners, how is Ali? Allie's doing really well.

57:29She passed the bar. She went to law school. She was her own champion. I mean, I think early on, you know, she was like, Mom, I don't want to know what I have. Don't tell me, which was really, can you imagine, in the early days of walking around thinking, oh, my gosh, my daughter has four years, doesn't even want to know. But she goes, I know whatever it is, Mom. You'll figure it out. But Allie's really the one who has figured it out. And she's doing really well. And she's a champion. And, you know, you see how the toll it takes even on, you know, I have two other children. And one at the time was a musician, you know, on the road opening for One Direction for years.

58:08And he's out on the road and I'm, you know, going and going to these different institutions. And I should say, because as people are going through this and whatever your journey is, even while I was going through this and this was Ali's, there was at one point that I myself became diagnosed with cancer. And I had to really sort of go, this can't be again, that visualization. I was like, this isn't going to be the movie where like the mom's trying to save the daughter, but then she gets cancer and she dies. Or Lorenzo Zoyle, which people told me about where, you know, he dies. It was like, no I'm going to whatever the odds are whatever things happen there's another way to look at it and another way to persevere and and get through it what have you learned about so like let's say there are people in the audience who are listening or watching today they know someone who's struggling with an autoimmune disease or someone in their life or maybe even and even if they are I have people in my family and and life where do they start what do they do where do they get help like Like what are the best places that you've seen or places of support, especially if people aren't in a, you know, financial, don't have financial capacity to help solve some of those things?

59:31Well, first and foremost, they have to start within. They have to find their voice and not be a victim of it, but go, what can I do? In my situation, when I created an app, NMO Resources, and I started to put together building an actual community for patients to have support groups. So look for other people that are going through what you're going through and start going through that, you know, having people that you surround yourself in life. Try to put together a team, even at whatever level. And I know people will look at, and I've heard people like, Victoria, we don't have the money you have and all of that.

1:00:12No, but you have a voice and you know if something you're hearing doesn't feel right, getting those second opinions, advocate for yourself. That's a really, really big part of it. And a big part of what I do when I'm doing my patient days where I bring together hundreds of patients together, I'm advocating for them, but I'm getting them ultimately to advocate for themselves because that's what they need to do. And seek out, just do the research, go online, look at the different things that, you know, and, and sort of vet them for yourself and see what feels right. It's all about taking action.

1:00:53I'm, I'm working on a, on another book right now that'll come out next year, but it's called worrier to warrior and worry. I always say worry weighs more when you carry it alone. So you got to take that worry and, and kind of redirect it and channel it and do the things, become that warrior for yourself that will ultimately lead you to a better place. Victoria, you've been so vulnerable and generous and kind today with sharing your journey, sharing challenging moments. And today I just want everyone who's listening, watching to know we have only skimmed the iceberg of the amount of work, the depth, the story.

1:01:34And so I highly recommend that both of these books, Saving Each Other and The Power of Rare, if you're truly fascinated by the depths of this story and journey that you dive into those two books, because like I said, we've only, we've only touched the tip of the iceberg, but Victoria, we, we end every on purpose interview with a final five or a fast five, which have to be answered in one word to one sentence maximum. And I always ruin it by asking for more details. So that that's up to me, but Victoria, I'd like to ask you your final five. The first question is what is the best advice you've ever heard or received?

1:02:13I'd say my mom early on said, wash your face, put on some makeup and just go out there and do it. I like that. That makes sense. That's the makeup alliance. And then I started a cosmetic company. That makes sense. That makes sense. What you tell your kids every day. Just, yeah, that's great. Second question, What is the worst advice you've ever heard or received? You'll never be able to do that. You know, you're aiming too high. So true. Question number three, how would you define your current purpose? Oh, gosh. I mean, my purpose is to cure autoimmune disease around the world, but really my purpose is to just be a good person, a kind person to help people and truly just share all the blessings of the good fortune in my life.

1:03:10That's really my purpose. Question number four. You used this phrase a few times in the interview, like finding your voice, you have to have a voice. What is the best way for someone to find their voice when they feel they've had to be quiet, silence or they never had one in the first place? Well, I don't believe nobody's had not had a voice in the first place. We all have that. It's for me, I always encourage people to just to get quiet with yourself, which is different than becoming quiet, but getting quiet with yourself. A lot of times I use that visualization of just zooming out and hearing myself say it in my mind and then letting the words come out just like they did when I made my scream and I was afraid.

1:04:08And those words came out is be willing to do it. Just do it. That's so important to me. Just get quiet, center yourself, think about it, and then just say it. Move it. Move through it. Just do it. Beautiful. And fifth and final question, if you could create one law that everyone in the world had to follow, what would it be? If we could all just get back to our shared sense of humanity, you know, that really more than not, people are good people. I have seen, and that is one thing, Jay, I'll tell you, working with 40 different countries and all the different researchers and scientists from around the world, when they walk in the doors of my conferences, everybody there is there to really help people.

1:05:08All the politics, all the other stuff, we're there to help people. And just that, if we could just get back to that shared sense of humanity and loving one another. There'd be nothing better than that. Thank you. Victoria, is there anything that I haven't asked you today that you deeply want to share or something on your heart or your mind or your soul that you feel called to share? I don't know. What do you think? People hearing this, will they benefit from it? Absolutely. I mean, you're hearing it for the first time. It's so, I mean, I meant everything I said. It's so honestly moving to hear a journey of someone just a real human story of someone who achieved material success after so much personal tribulation and trauma to then switch to a service-based life and now dedicated even further of course through helping Ali but now to helping autoimmune diseases as a whole yeah i mean i don't know if there's a better story arc for a movie you know it's like that you know i don't know if it's almost like you couldn't write it yeah because it's so powerful that someone would be able to rise from those situations even you know third marriage you said like yeah bill yeah of course yeah yeah yeah but i mean like to go through that after what you've been through to to have that ability to find love again and create love and then to have a child and kind of have everything picture perfect externally it may seem yeah to then have the worst news you could potentially ask for and yeah you know i i think i think it's going to move and help a lot of people i i wouldn't have i i mean i don't know many people who've lived that life so yeah well you know what i mean honestly just the fact that you've given me the opportunity because is there are probably a lot of people that are going through what they go through, and it's hard to get people to pay attention.

1:07:23Getting press early on was like, forget it. I mean, it's like, it's not sexy. It's not, you know, people are talking about whatever. It's always something that, and to me, it's like, this is a great story for how things can actually happen. When you really do see how these doctors and patients and people work together and what's been built, it really is extraordinary. I mean, it's been 15 years now. And just even, you know, just going through the Hall of Fame, you know, which was amazing. Just to have that experience of having Gloria Steinem induct me into the Hall of Fame or the Pope, which will get you there, was all extraordinary.

1:08:07You know, who would think that somebody who didn't graduate high school and, you know, is all of a sudden those kinds of things. How much have you invested now in this journey? How much have you personally invested into this? I've put in$80 million of my own money. Yeah. Yeah. That's incredible. Yeah. And that's important too. And that$80 million is really, you know, you look at that, it's hundreds of millions that a pharmaceutical company had to put in. And I had to show them and build a model to show them how they can make money. You know, and I could have just, you know, become angry or like, why do I have to do that?

1:08:44But they can just do that. But you have to kind of, I sit in everybody's seat always in my mind in the room and go, how do I get everyone aligned so that we can all keep moving forward? And that was really, really important is to look at what everybody's needs were in that room, what different countries, different institutions. But then saying to the Mayo Clinic, like, unless, you know, you work with Oxford or whoever that is, you know i'm not writing this check so everybody had to work with another institution in all the research i think that's the most beautiful thing that it's you're just using the success you had in service i mean what what better use of success is there than in service to to others yeah and now that you're dedicated to helping hopefully prevent and solve autoimmune disease is.

1:09:41I mean, yeah, I feel like you're so right that so many people are misdiagnosed or undiagnosed, diagnosed too late. Like I'm hearing about it all the time. That's what this will really help, Jay, too, is that because so many people are misdiagnosed with different things. Most of the patients that now have what Allie has, they've been misdiagnosed before the doctors even knew what it was. They were misdiagnosed with MS or, so that's why there's so many more patients than originally they thought. And I created, there's an assay that it's literally a blood test that tells you if you have it. So. How accessible is that for everyone?

1:10:20Anybody can get it. Anybody can get it. I mean, in this case, the Dr. Mark checked that box, you know, for that test. But yeah, but that's why I created the app and things. Because when you go to an emergency room, a lot of people, they wouldn't even know about this condition. So, And then when you're not getting treated, you're just having more and more damage. And how does the app work? Anyone can use it from home? The app, yeah, it's on your phone. Yeah. It's just on your phone. Could you tell us exactly the name of the app? The app is called NMO Resources, and you literally download it, and it's got everything.

1:10:54I mean, it's extraordinary to see there isn't something like this that exists. It's totally free. It's totally free. It's got everything from the clinical trials that are going on to support groups. anywhere in the world where you are, you can find a physician. It talks about what a relapse looks like. I mean, if you're having an attack, you go into an emergency room, you show them the app, everything is right there. I mean, it's really extraordinary. I wanted something that people would have in real time. If you had this for all conditions, I mean, people creating something like this is amazing.

1:11:29Are you trying to do that for other autoimmune diseases as well now? What I'm doing now, especially in the one with Allie's case, is a lot of times in different conditions, you don't know if you're having a relapse. So I'm working with Verily, which is part of Google, in helping find all the biomarkers. And also I've created something called a relapse navigator, which doctors will be using that, you know, is really kind of a shelf where you can put in the different symptoms and things that you'll be able to patients and doctors can know if they're having attacks. So, you know, thinking about technology now with where we're going to be with AI and all of these things.

1:12:10I mean, when I started, I think there was maybe three papers that were published on what it used to be called before Animo Dovix disease. And now there's thousands that have been published and so I've been doing this work, literally thousands. And it's been 15 years that you've been dedicated to this now. Yeah, 15 years I've been doing this. 15 years I've waited to talk to you or to talk in general just to get to get the message out there you know because it's really it's really really tough and I know there's a lot of people in the world that are suffering with these kind of conditions and diseases and there's probably a lot of parents that are trying to figure it out and figure out how to to make enough noise or get the attention because autoimmune disease isn't in is not you know going away anytime soon until we all really put our focus on it and know that if we can cure autoimmune disease and cancer, I mean, think of, and they are different sides of the same coin.

1:13:10When you treat one, you get the other. So it's, you're much more vulnerable to that. And what's that gap? Like what is, because you always feel, I guess, we assume that so much money is going towards solving cancer and solving this. Like if, is money the issue? Is time the issue is collaboration the issue like what's the i think what makes me the craziest is when people give a lot of money say they're very well intentioned they're giving money to something but it's going to maybe to pay for a chair for a professor or you know it's not going where it needs to go a hundred percent you know we're pretty much i've put in 80 million dollars of my own money um of our family money every penny goes to research and science a lot of places it just doesn't.

1:13:56Or it's not put to, like, everything I do is tranched. I have to see results. Everything has to be translational, meaning bench to bedside. If you don't see that it's going to be really on the critical path to make a difference, I don't fund it. So a lot of money is spent on things that, you know, scientists, and God bless them, but they'll research, you know, the head of a pin forever. You know, I mean, you have to sort of be very strategic and you have to go, okay, where, where is the gold in this that I'm going to fund it because it's really going to make a difference. And why is it important for the people to make a noise?

1:14:37Because like you said, like they can't help solve it. They can't, they necessarily, the solutions don't exist right now. If someone's struggling, what, what's your take for the prevention, but also like the living with for someone who, you know, what is that? Obviously some of that for NMO is in the app. Yeah. But if it's autoimmune diseases in general. Oh, yeah. I mean, I think that basically, well, I would tell anybody that has an autoimmune disease, look at this and look at the things that we recommend. I mean, obviously you've got to be speaking to your own doctors and following your own medical advice because, you know, I'm not a doctor.

1:15:15I'm like Dr. Mom, you know. But I would say that there's a lot more research out there and people that are making huge advances that a lot of people don't even know about. So you have to really advocate and do the research and do the deep dive. Don't just go with what the one doctor may say to you. There's a lot of people working in these areas that you may know nothing about. And look at it on the broad spectrum of like set it on the world stage. Look at it globally. See what they're doing in different countries. You know, really educate yourself. That's what I had to do. I mean, I had to really learn it and study it and understand it.

1:15:57So you just can't be a victim of it. And I know that's a lot easier said than done, especially when you're in pain and you're struggling and you don't have money. But you've got to find a way. You've just got to find a way. I always find a way. Yeah. thank you victoria thank you so much thank you i mean i was the whole time yeah exactly i think it's one of the you know it's personal story to me is is the best way to help inspire and and liven others and i think everything you shared today will touch people's hearts and move them into action so thank you well thank you listen you so grateful you gave me this opportunity to know i'm grateful to call you a friend and uh you've told me you know we've talked about so many of those things before but even for me to sit and hear you in this way and knowing how it's going to impact my community is going to be really beautiful so yeah thank you yeah when we do a lot of you know i do a lot of research and work in india as well like worldwide so you know it's just so many people that they just don't have the access that they don't know or they are too afraid to you know so anything that you can do i mean you're the best i'm here to help i i believe in it i i agree with you i don't i don't know if there's any bigger thing to solve than health care like i don't i don't think there's anything more important in the world yeah than solving incurable diseases yeah because everyone should be able to live a healthy end yeah and uh and i think that's why if people go well gosh if she did it and like no experience other you know like the way i started and found my way into it but when you actually that's when i honestly when people started saying to me um you know this is actually going to change ms or this is actually going to change lupus and rheumatoid arthritis and that i was like really like then i just thought this is this is this is the this is the work this is my life's work you know thank you victoria thank you to everyone who's been listening and watching back at home uh please make sure that you share this with friends you know would be inspired by it moved by it and please let me know what really resonated with you and stood out for you.

1:18:14A big thank you to Victoria again. Thank you. And thank you so much for your friendship and your service, Victoria. It means the world. Thank you so much. Thank you. Thank you. If this year you're trying to live longer, live happier, live healthier, go and check out my conversation with the world's biggest longevity doctor, Peter Attia, on how to slow down aging and why your emotional health is directly impacting your physical health. acknowledge that there is surprisingly little known about the relationship between nutrition and health and people are going to be shocked to hear that because i think most people think the exact opposite let's be honest life is stressful it's work it's relationships and the state of the world but there's a way to bring that stress level down calm it's the number one app for mental wellness with tons of content to manage anxiety promote concentration and help you unwind.

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