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Discover a new educational and interactive podcast, Stories for Kids by Lingokids.
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Our episodes are packed with fun activities.
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Right, Elliot?
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Oh, yes.
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We went shape hunting around the block, and we found spheres and cubes on the street.
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That was great fun.
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Join Stories for Kids, the Lingokids podcast, inspiring you to learn while having fun.
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Listen to Stories for Kids on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
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At one of the most famous restaurants in the world, there s a table in the corner where the most incredible conversations on the planet are happening every week with owner Ruthie Rogers and amazing guests like Martha Stewart.
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But I did have an affair with one of his best friends.
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Jimmy Fallon.
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Do you want a zip line over your dad while he gets attacked by alligators?
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And Paul McCartney.
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John and I hitchhiked to Paris.
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We ve saved you a seat.
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Ruthie s Table 4.
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Listen to Ruthie s Table 4 on the iHeartRadio app or wherever you get your podcasts.
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The Therapy for Black Girls podcast is your space to explore mental health, personal development, and all of the small decisions we can make to become the best possible versions of ourselves.
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I m your host, Dr. Joy Harden-Bradford, a licensed psychologist in Atlanta, Georgia, and I can t wait for you to join the conversation every Wednesday.
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Listen to the Therapy for Black Girls podcast on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
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Take good care and we ll see you there.
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And ultimately, the neurologist is doing a series of tests, wanted to do a spinal tap, a lumbar puncture, and I m like, why?
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Like, she s just got something going on with her eyes.
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What are y all doing, you know?
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And so when they called with the results, they basically told myself and my husband that she had four years to live.
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Before we jump into this episode, I d like to invite you to join this community to hear more interviews that will help you become happier, healthier, and more healed.
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All I want you to do is click on the subscribe button.
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I love your support.
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It s incredible to see all your comments, and we re just getting started.
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I can t wait to go on this journey with you.
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Thank you so much for subscribing.
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It means the world to me.
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The number one health and wellness podcast.
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Jay Shetty.
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Jay Shetty.
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The one, the only, Jay Shetty.
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Hey everyone, welcome back to On Purpose, the number one health and wellness podcast in the world.
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Thanks to each and every one of you that come back every week to become happier, healthier, and more healed.
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And that s our mission here, to introduce you to thought leaders, teachers, academics,
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expert celebrities athletes who are all trying to make the world happier healthier and more healed today s guest has been dedicated to that in a personal way and in their own mission i m excited to introduce you to a dear friend of mine who have been wanting to have on the show for a very long time we ve had some beautiful conversations offline i ve really got to know her heart and her soul more than anything and i m
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I m honored today to get to introduce you to her.
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Her name is Victoria Jackson, who was known previously as a cosmetics entrepreneur, but transformed into a medical research trailblazer and Women s Hall of Fame inductee.
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Victoria founded the global powerhouse brand Victoria Jackson Cosmetics.
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She and her husband,
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Bill Guthy, founder of the marketing behemoth GuthyRenka, established the Guthy Jackson Charitable Foundation to fund research on NMO treatments and a potential cure.
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Victoria s unrelenting determination proved effective.
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In 2016, the foundation developed the first ever NMO therapeutic, and soon after, three therapies received FDA approval.
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The unprecedented pace of the accomplishments that her and her affiliations have had are absolutely phenomenal, and I welcome you to the show, Victoria Jackson, and the author of two incredible books that I highly recommend, Saving Each Other, which of course we ll be diving in today, and this book, The Power of Rare,
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A Blueprint for a Medical Revolution.
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Please go and grab both of these books.
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You re going to be hearing about the insights from both of them in this conversation.
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Victoria, welcome to On Purpose.
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Thank you.
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It s so nice to be here.
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I ve been just waiting for the opportunity to talk to you.
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I m a big manifester.
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And so when I started listening to you, Jay, I was so inspired, honestly, that I just was like, there s going to be a time.
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I m sitting across from him.
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We re having this conversation.
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So thank you so much.
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I love that and our paths have just crossed so organically.
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We have a lot of mutual friends.
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Yeah.
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And we bumped into each other ages ago at this great fundraiser that Ellen did.
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Yes.
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Called Gorilla Polluza.
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Yeah.
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Which was to raise money for the Diane Fossey and Ellen DeGeneres Fund.
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Yeah, it s great.
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Which is incredible.
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What she s doing.
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Yeah, amazing.
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Have you been out there yet?
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I ve not.
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Amazing.
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I got to go out with them last year and it was unbelievable.
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But we met there.
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Yes.
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And you were one of these people, and I just want the audience to know that you were one of these people that instantly was talking to me from your heart and I felt it.
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Then you were arranging for me to go and meet the Pope.
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the next thing I knew, and it didn t happen because of the pandemic.
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Yeah.
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But I was so grateful to you for even helping that invite come along my way, and I hope I get to do that in the future.
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Oh, yeah.
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What an honor, thanks to you.
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And I had that very special invite to go to the Vatican, which of course, due to the pandemic, didn t happen.
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And then we ve had these wonderful connections, even with your daughter and your home and anyway, so many, so many different things.
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I feel like your journey is truly unique and incredible in so many ways.
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And I want to start off with a question of what is your earliest memory from childhood, of your own childhood, that stays with you or that is the immediate flashback when you think to being a child?
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You know, I always think about how I felt like I was always different.
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I say that I was born early.
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I was born in the six and a half month.
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And so I lived in the hospital for three months before I even came home.
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So I think because I ve always struggled so much with anxiety and
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worry and, you know, all of that.
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I think I was sort of born early to get a head start on all of it.
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So when I think of my early years, I really think of, you know, a young person that was really struggling and just trying to really find her place in the world and seem like since I did come in early and was struggling just to sort of make it through in those very, very early times.
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because this is going back a while.
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And, you know, now I know for, you know, preemies, they have a lot more technology than they did then.
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But I ve always been in survival mode, I think my whole life.
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So I think that s what I think about is this little person that came into the world and has been in that mode ever since pretty much.
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Do you think that the struggles that you had have changed towards the struggles that young people have today?
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Or do you think that
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They re the same thing, they re just differently experienced.
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I think they re definitely, I think they re the same thing.
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But yeah, I mean, obviously I wasn t dealing with social media and things, but you know, school was social media, you know, your friends.
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I mean, so they were all, you re still trying to figure out your way in the world.
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So I think it may look different now, but I think that s probably why even in raising kids, I understand my kids or can talk to them on a level of understanding whatever anxiety they re going through.
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But it s just, it s just put out on a different stage now and much bigger stage.
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And so that makes it a little more difficult.
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What was the thing you were most anxious about growing up?
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What was the thing that kept you up at night that made you uncomfortable that made you nervous?
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What was that?
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You know, for me, it was, I think, because I had parents that were young and trying to figure it out and ultimately got divorced, there wasn t, I didn t feel a lot of love.
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And I think, you know, even my mom would be the first to say she, you know, having a child that was in the hospital right away and
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She s so young.
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She didn t really know how to bond with me.
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And I think that was tough.
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So I was somebody that was always seeking approval and looking for that love and just trying to figure out who I was.
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And I always had this really haunting feeling that something was going to happen to me, that there was just somebody was going to get me, something was going to happen.
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It was just something that I remember early on just feeling in a unique way.
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And how did you process that?
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Like, what was your antidote or?
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I mean, I think there s times you re thinking, you know, am I special?
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Is there a reason I m here?
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But it just manifests in a lot of anxiety.
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And so, you know, you re always just feeling like there s some shoe that s going to drop or some
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that s gonna happen and I I lived a lot of my early years like that as I kind of keep going back to this finding my way.
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It s interesting how every teenager goes through this phase of finding our way and then often we either get stuck in a way that
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our parents expected or society expected or we fall into something or we continue to find our way and sometimes you re in your 30s or your 40s and you re still trying to find your way and you kind of feel out of place because everyone else has stability but
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I can definitely attest to that.
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I felt in my teens, I was trying to fit in and I was trying to find my way.
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And I was anxious about, did people think I was in with the crowd?
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And I think we all go through this.
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What was really interesting for me was, I think I ve kept trying to find my way.
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which is why I ve lived so many different lives, because I ve never wanted to not take a step forward.
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What did you imagine would be your first career path?
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Or what did you imagine would be your first venture?
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And what did it end up being?
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Well, you know, as I m even just sitting here talking to you and I m looking at a microphone that says on purpose, purpose was always a big thing.
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Even when I was young, I was thinking like, whether it was why am I here or what is the way it was sort of like, what is my purpose?
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SPEAKER_00
And I didn t really have a skill set that I could sort of point to other than I d probably say early on, I recognized that I was more of a of a creative, you know, I definitely wasn t going to be the academic.
1
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I ended up sort of, you know, ditching school a lot due to a lot of kind of unsettling things at home.
1
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So I was, you know, trying to figure out what was the way that I was going to really express myself and knowing that I didn t come from a family that had money.
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So I was going to have to figure that out for myself.
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But I knew that I was creative and it probably, I started doing makeup.
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And I think when I started doing my own makeup, doing friends  makeup, I thought,
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I genuinely, because I struggle with such low self-esteem.
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I mean, it s gotten a lot better over the years.
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And I ve, I ve written, you know, two prior books before these, Redefining Beauty and Make Up Your Life, all about self-esteem and looking and feeling better.
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And I really thought once I started to make up people and give them the sense of like they looked better and felt better, I had some passion around that.
1
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It was something that I thought, oh, this is a skill set that I can really perfect.
1
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And, you know, I love the idea.
1
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And I m the kind of person, if I can do it, then I want to show everybody how to do it.
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It s like, oh, if I can do this, you can do this.
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And here s how.
1
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So if social media existed, you would have been one of the first beauty influencers.
1
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That s what would have happened because makeup was one of the big things that took off on social media in the early days.
1
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Absolutely.
1
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That s how my infomercials were so successful because I was actually teaching you on my DVDs how you could actually do your makeup, you know, from start to finish.
1
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So that s what I was doing.
1
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I was putting all the cosmetics together.
1
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Here s how to use them.
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Long before I was, I had my own radio show before there were podcasts where I was doing makeovers on the radio.
1
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And they said, if you can actually get people to call in and do a makeover on the radio,
1
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you can have the airtime so so yeah this was the early days and i i love that i love the teaching aspect of it what gave you the confidence i think what s really fascinating about that is you re a young person with low self-esteem you re confused about
1
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who you are, you have anxiety, but then all of a sudden you feel, I m passionate about makeup and actually I feel confident to teach others or share that.
1
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How does that switch happen?
1
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Because I think so many of our listeners are in that position right now where they feel anxious.
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Maybe some of them have imposter syndrome.
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Maybe some of them are listening and they re going, Jay, I just don t know where to start.
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Or maybe I know what my passion is, but I m not good enough.
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And, you know, we have this lack of belief in ourselves.
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How did you switch from I m anxious to I actually like teaching and sharing?
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Yeah, well, by the way, while I was teaching and sharing, I was also anxious.
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So I managed to pull double duty at the same time.
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I just went for it, you know.
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So for me, for example, I wanted to get in the world of makeup.
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If you were to look at my portfolio and go through my very early, early, you know, photographs of makeup,
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not the best makeup in the world, you know, so like I had to learn it and perfect it.
1
SPEAKER_00
And, you know, I had the eye for it, but I had to now really hone my skill set to match what my eyes were seeing and ultimately came up, which was my concept of the no makeup makeup.
1
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I was the original person sort of doing that in the in the late 80s when everybody had on tons of makeup.
1
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Explain that to us.
1
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Break that down for people who who may not have either been around or may not know
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fully what that was in the beginning of it, because I think now, yeah.
1
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In the 80s, you think about like shoulder pads and the music videos that were out there, and there was a lot of makeup.
1
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And my whole thing was, and there really wasn t even a makeup that existed at the time.
1
SPEAKER_00
Let s talk about just even a foundation, a base color that, you know, you use on your skin now to even out your skin tone.
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That was more natural.
1
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Everything was these kind of crazy tones or pinks or oranges.
1
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And I wanted to just help women look beautiful, look great.
1
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but without feeling like they had makeup on so that they could really look like themselves and not use it as war paint or a way to necessarily be someone else, but just feel confident in themselves.
1
SPEAKER_00
And so I had no idea how to actually create makeup.
1
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So I just started as a makeup artist.
1
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I started mixing in my garage pots and pans and making up concoctions that I would use on my makeup jobs.
1
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And that s really how I started that.
1
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What I love about that, and I want everyone who s listening and watching to know this, is that the first time you do anything, it won t be that great.
1
SPEAKER_01
Yeah.
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And it s okay, and it s good to know that.
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I think a lot of us think, well, before I do something, I ve got to have the perfect name, have the perfect branding, have the perfect product, have the perfect service.
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And the truth is 99% of the time, the first thing you put out there
1
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is never going to be that great.
1
SPEAKER_01
If you look at the first version of Facebook or Instagram or Snapchat or anything we use today, the first version of Amazon, the first version of makeup, if you look at all of the first versions, they weren t that great.
1
SPEAKER_01
And I think a lot of us, we re kind of knocking up against that going, I want to put something perfect out before we ve even made any progress.
1
SPEAKER_00
Yeah, and you have to just have patience with yourself and patience with the project.
1
SPEAKER_00
But you have the process.
1
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But you have to just be willing to even put yourself out there and try.
1
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For me, I was like, I want to do makeup.
1
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I want to do for magazines and things like that.
1
SPEAKER_00
OK, how do I start contacting photographers and building a portfolio and just be willing to?
1
SPEAKER_00
Even women, they d be so afraid to do their makeup.
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And I m like,
1
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What s the worst that s going to happen?
1
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You re not going to like it.
1
SPEAKER_00
You wash it off, you know?
1
SPEAKER_00
So I did 20 years of going to the jails, 20 years of going into the jails and doing makeup for women there where, think about it, where I would say, women would be, I d go, what do you want your makeup to say?
1
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And I d have women go, I want my makeup to say pull over, you know?
1
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a lot of women that were, you know, working the streets or whatever.
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And I d be like, okay, let s change the message on that.
1
SPEAKER_00
Let s talk about, you know, self-respect.
1
SPEAKER_00
And I would see the energy of hundreds of gals in there that were, you know,
1
SPEAKER_00
Really ready to hear something and how it just even out leveled out the room with people that when they saw themselves.
1
SPEAKER_00
Kind of a before and after really change the whole energy so i got really passionate about this whole thing i don t like all the power of mascara and looking better and feeling better about yourself but it was all you know as i m teaching it i m learning as well and i think you know do to.
1
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an incident that happened when I was really young, sort of going back to that, thinking something really bad was going to happen to me.
1
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I was one of the early victims in 1973 of the pillowcase rapist.
1
SPEAKER_00
And that left me with, you know, obviously a lot of emotional scars and things that I ve spent a lifetime working on, but very claustrophobic.
1
SPEAKER_00
So then going to the jails for 20 years was very claustrophobic to put yourself in a very uncomfortable situation to, you know, have to, but I was there because I really believed in what I was doing in the message.
1
SPEAKER_00
And it really was very instrumental and helpful in, in the other parts of my life.
1
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As I say, as you talked about mascara to medicine that were really important.
1
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Hey guys, it s Jay Shetty here, and I couldn t be more excited to share this exciting news.
1
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You asked, we delivered.
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Juni sparkling tea with adaptogens made
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by my wife and I are now available in all Sprout locations across the country.
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Juni is the perfect midday pick-me-up.
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With only 1 third of the caffeine found in brewed green tea, it provides a gentle energy boost without the crash.
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It only has 5 calories and 0 grams of sugar, making it the perfect drink.
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Plus, it s made with a delicious blend of adaptogens and nootropics that may help boost your metabolism, combat stress, pack your body with antioxidants, and stimulate brain function.
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Head over to your local Sprouts or visit sprouts.com to find the closest location near you.
2
SPEAKER_01
I m glad you brought that up because we ve spoken about that offline before.
2
SPEAKER_01
Could you walk us through and explain a bit more about the pillowcase rapist just to get a sense of who that was, what that was, et cetera, to get a sense of and exactly the experience you had because I just,
2
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I want people to have that context when we re looking at the rest of your life and the rest of your story as we dive in today.
2
SPEAKER_01
Right.
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Because if someone s unaware, it can be easy to look at your journey and
2
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I think we do this a lot today where we look at a snapshot of someone s life and we think, well, they ve done it all.
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SPEAKER_01
They ve made it.
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They ve achieved it.
2
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They shouldn t have anything to worry about.
2
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And then when you kind of look at someone s life in full perspective, you recognize there s so much more to it.
2
SPEAKER_01
I often give the analogy to people of if you walk into a movie halfway.
2
SPEAKER_01
and you see someone s life, you might think they have the best life in the world.
2
SPEAKER_01
But if you didn t see the start of the movie, and then the end of the movie, you don t really know their full picture.
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SPEAKER_01
So for that reason, I d love for you to shed some light and context on that.
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Yeah, I think you re exactly right.
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I mean, there s this snapshot, and then there s the film.
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And I think in my early mind, in the reel of the film that was probably playing in my head, and as I said, feeling like,
2
SPEAKER_00
there was a reason that I was here and that purpose.
2
SPEAKER_00
And if somebody would have told me that ultimately I d be getting drugs made and working to cure a disease and finding a cure for a disease, I would have never believed it.
2
SPEAKER_00
But I did always have that feeling of somebody, as I said, that was going to get me.
2
SPEAKER_00
And to put a little context to California has had
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There was the pillowcase rapist in the 70s.
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And then as if we all needed another pillowcase rapist, there s been another one since.
2
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But the pillowcase rapist that unfortunately was involved in my early days in life came into the house when my whole family was home.
2
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We lived in a duplex.
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It was actually in West Hollywood.
2
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As again, I used to, because I felt I was always a target of potentially something, I would get teased a little bit.
2
SPEAKER_00
And I had an older brother that would sometimes tease me.
2
SPEAKER_00
And so he s a very nice guy, but sometimes, you know, people just, I think nobody ever thought that anything was going to happen to me.
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SPEAKER_00
And one night when I came home, it s that sort of really scary scene you see in a movie where
2
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You re in your room, and I had the room off the back of the house.
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And I look up in the mirror, and I see somebody right behind me.
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And it s that awful thing, and you re in a ski mask, holding something with what looked like a dishrag hanging over it.
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And I thought it was my brother maybe playing a joke.
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And I turn around, and I m like,
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You know, what are you doing?
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And I heard in a voice that I knew was completely unrecognizable to me when somebody says, don t move, that it was not a good thing.
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At that point, I thought since my whole family was home and it was really late at night, I thought I was really the last victim.
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And he had killed my entire family and I was the last one.
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And without going into all the horrible details of it, it was definitely a situation where for the first time, I really experienced
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that disassociation, going out of body, where I made a really conscious, which then kind of goes unconscious, decision to be above what was happening to my body and to the situation at the time, and obviously thinking about my family.
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And it was like really looking down, and I just thought, wow, I m 17.
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I was just about, I thought, to graduate high school.
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And I thought, I can t believe it ends here.
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You know, like this doesn t feel like the end of the story.
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There s a reason I m here.
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And I knew I had a moment where when I saw part of his calling card and trademark is that when he had me in a position where I could see he was pulling the pillowcase off of my pillow, what he did was he would then put them over your head and he suffocated and
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That would be, you know, obviously lights out for you.
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And when I saw that, as he was starting to put it over my head, I really made this very decision, like, I am going to, on three,
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And you know where you have that, where you re thinking, is that you re so freaked out, like, is a sound going to come out?
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Am I going to just be screaming in my head?
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But I was like, on three, I m going to scream, and I m going to scream really loud.
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And this is either going to be the end of me, because he did have a knife, and he had stabbed my leg and my stomach and part of my face, that I thought, well, this could be the end.
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just in my head counted to three and on three I screamed and he dropped the knife.
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Surprisingly, he pulled off his ski mask.
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I couldn t really identify him, but I guess, again, that was another sort of calling card that they knew it was him and he ran out.
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And my door in my bedroom, I remember
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you know, sometimes would get stuck and he s like trying to pull to get out.
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And I m like, oh, my gosh.
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So it was just and then obviously I ran upstairs to find out that my parents, they were asleep.
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I was the only victim in the house because he had come in through the put his hand up through the dog door that we had.
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It s you know, we didn t really have security in the house per se.
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Then it was really just lock the door and he had unlocked.
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I never have a dog door again, the door.
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And that s how he had gotten in.
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I literally got chills listening to that story because it s such a horrific, horrendous thing to have to live through.
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And I m grateful you shared it with us.
2
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Thank you so much for being vulnerable and open and sharing that.
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How do you not let that let you live in fear for the rest of your life?
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What s the next thing you do from something like that?
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Because that would be if you didn t do anything.
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ever, it would be completely valid because it s such a painful experience to go through.
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Yeah.
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How do you respond?
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How do you react?
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What s the first thing you do after something like that?
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I mean, obviously, you know, I was hysterical and I was, you know, I was, there was the relief of my parents and, you know, being okay.
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But, you know, there was just, I knew that I could never go back in my house.
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I left, I didn t graduate high school.
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And I got married as soon as I turned 18.
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I didn t want to be alone.
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So for me, it really manifested in fear of being by myself, of somebody getting me again.
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But I also knew that there just was a reason that I was here.
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And it was shortly after that, actually, that that s when I started going to the jails and started to do the work there because I thought, how does this happen?
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Like, how do people go down these roads?
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You know, what is it that, you know,
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makes somebody make the choices in their life.
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And I just knew that for me, I wanted to find what it is ultimately that I was supposed to be doing.
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And the closest thing at that time, because I wasn t going to be going to college because I didn t graduate high school, was going to beauty school.
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I thought I can get my own little scholarship there and go and
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you know, start doing it through the one way that I knew the only skill that I thought I had was in this kind of being this creative and wanting to help women look and feel better about themselves.
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So I just I started there really with no money and and that vision and decided that that s that s what I was going to do.
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It s a tough question, but did you get an answer when you started visiting the prisons of why people did certain things?
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Did you find or discover anything or hear anything?
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And on top of that, did the pillowcase rapists go to prison as well?
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Yes.
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The pillowcase rapist was finally caught in prison and he s no longer with us.
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He s gone.
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Thank goodness.
2
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No sadness around that for me.
2
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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,
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That s a lot of visits, and you hear a lot of different people s stories.
2
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And I remember going at times where there was a mom, a daughter, and a grandmother.
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They were all there.
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And it was just like, wow, how does this happen?
2
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And so there was a lot of stories in my mind.
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because I didn t want to judge.
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I had to make everybody like, everyone s here as a drunk driver, you know, you re sort of like, I wanted to equalize the room so that even though you may be seeing the teardrops at the end of somebody s eyes of, you know, maybe what they ve done in life, I didn t want to
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judge.
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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
3
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crazy eyebrows or whatever it was that it really sort of changed them into just somebody that they look different, but who they were inside was very different.
3
SPEAKER_00
I wanted to get to that.
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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,
3
SPEAKER_00
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 it works absolutely no and i think it s incredible how much our appearance does affect our confidence
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And I ve seen it.
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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.
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SPEAKER_01
And you hear their reaction.
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I ve seen some of these videos where you hear their reaction before and after.
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SPEAKER_01
and how they feel about looking at themselves in the mirror and how we can be such a boost for confidence as well yes and so that definitely resonates how did it go from being your passion and something that you so.
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SPEAKER_01
Connected to as a way of helping people build self esteem to then becoming a very successful business.
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SPEAKER_01
There s 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.
3
SPEAKER_00
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.
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SPEAKER_00
the jails again i was trying to strip down people to the essence of who they were and to me at the core 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 six hundred products over the course of thirteen years
3
SPEAKER_00
But my foundation, which I sold millions and 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.
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SPEAKER_00
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.
3
SPEAKER_00
look like themselves and not, you know, pile on all the makeup.
3
SPEAKER_00
So 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.
3
SPEAKER_00
That s a directory that, yeah.
3
SPEAKER_00
Exactly.
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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.
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I want to create these shades, these textures, these fields.
3
SPEAKER_00
And I started.
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And then while I again wanting to teach what I do.
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and never having graduated or gone to college, I thought, you know what?
3
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I want to teach this.
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I m going to call UCLA.
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They have an extension program.
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Maybe I could teach some of what I m doing as a Hollywood makeup artist and teach that.
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And I did that for 10 years as an extension course that was, again, sold out every quarter.
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SPEAKER_00
People wanted to learn how to do it, whether it was
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I had so many men taking it, you know, guys that maybe just wanted to meet gals, you know, and do their makeup.
3
SPEAKER_00
But it was another way that I could just see people wanted to connect in this way.
3
SPEAKER_00
So I thought, this is great.
3
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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.
3
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And I said, wow.
3
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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 eighties.
3
SPEAKER_00
And I hadn t really perfected my kit, but you know, we do that a little bit of that fake it till you make it and act as if.
3
SPEAKER_00
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.
3
SPEAKER_00
And then I m going to teach you how to do it.
3
SPEAKER_00
And, um,
3
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Basically, that long story short, they decided to roll the dice on that and shoot an infomercial.
3
SPEAKER_00
And the very first infomercial I did with two celebrities at the time, Allie McGraw and Lisa Hartman, we started doing a million dollars a week in sales.
3
SPEAKER_00
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
3
SPEAKER_00
three hour tutorials that you never see now.
3
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That s incredible.
3
SPEAKER_01
That s, that s amazing.
3
SPEAKER_01
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?
3
SPEAKER_01
Or was there not a correlation was healing a part of that or was healing having to happen separate?
3
SPEAKER_00
Yeah, healing is a part of everything.
3
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I think we all just, you know, healing happens whether sometimes we even know it or not.
3
SPEAKER_00
It s on like a cellular level.
3
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So, you know, it s whatever piece of what you re doing at the time.
3
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I ve gone through so many different stages of healing because I ve gone through so many different experiences as I
3
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said, you know, as my life has gone from like what I look at in the two parts, you know, the mascara to medicine.
3
SPEAKER_00
So it s all, all of that journey has informed me and my healing in so many different ways.
3
SPEAKER_01
Did you find that?
3
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You were saying that your experience made you rush into not wanting to be alone and obviously you got married very young.
3
SPEAKER_01
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?
3
SPEAKER_01
Because I can imagine that
3
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when you don t want to be alone.
3
SPEAKER_01
And of course, based on the traumatic experience that you had, it s very valid.
3
SPEAKER_01
But I wonder how that affects the other person as well and how you navigated that, especially in the early years.
3
SPEAKER_00
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.
3
SPEAKER_00
So my stepdad had adopted me.
3
SPEAKER_00
And so I really very early on, I d say, really never felt, you know, how to have a relationship with a father, with a man.
3
SPEAKER_00
And the fact that I m now married, this is my third time.
3
SPEAKER_00
So 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,
3
SPEAKER_00
I was afraid, and I was still trying to figure out me.
3
SPEAKER_00
And so I d definitely say that s been a theme.
3
SPEAKER_00
And even now, I ve worked really hard, especially in raising three kids.
3
SPEAKER_00
When you have your first child, you really have to think about all of your own stuff.
3
SPEAKER_00
And there were times where I always say, I didn t just
3
SPEAKER_00
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.
3
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A conscious thing and 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.
3
SPEAKER_00
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 have how you sort of navigate that in your in your world in your life.
3
SPEAKER_01
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
3
SPEAKER_01
And it s so interesting how on the physical level that s true and it s true on the emotional level as well.
3
SPEAKER_01
But 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.
3
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Some of us feel that way for a long, long, long time.
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It s almost like the earlier we recognize that our parents are humans, just like we are.
4
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of challenges and flaws that sometimes the healthier conversations and connection we can have with them as well.
4
SPEAKER_05
Your journey with your children has been a labor of love in so many ways.
4
SPEAKER_05
And I want to talk about Ali, who I had the pleasure of meeting, who, you know, is your coauthor on this book and has been at the core of
4
SPEAKER_05
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.
4
SPEAKER_05
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.
4
SPEAKER_05
I just can t imagine, I m not a parent, but I can t imagine, and therefore I can t imagine what that feels like.
4
SPEAKER_05
Can you walk us through what that moment feels like when you ve raised someone for, I think, what, 14 years?
4
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Yeah, I mean, my life changed.
4
SPEAKER_01
You know, my life changed when Allie was, you know, I have three children, and when Allie was diagnosed at 14, you know, we re, you know, completely healthy, fine, and, you know, we re going to 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,
4
SPEAKER_01
fuzzy and I m just thinking, well, I m, you know, I m sure it s nothing.
4
SPEAKER_01
We ll go see the eye doctor.
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SPEAKER_01
We ll get you some drops.
4
SPEAKER_01
And, you know, you don t think anything of it.
4
SPEAKER_01
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.
4
SPEAKER_01
go to an ophthalmologist and find out that, you know, and now I m going, he s saying, you ve got to go to a neurologist.
4
SPEAKER_01
And ultimately, the neurologist is taking a series, doing a series of tests, wanted to do a spinal tap, a lumbar puncture.
4
SPEAKER_01
And I m like, why?
4
SPEAKER_01
Like, she s just got something going on with her eyes.
4
SPEAKER_01
What are y all doing, you know?
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SPEAKER_01
And, um,
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SPEAKER_01
It was it was really scary and he s decided he s gonna 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 what is that and he goes, oh don t worry about it that would be a nightmare she s not gonna have that i don t even know why i ve ever checked that box.
4
SPEAKER_01
And of course, you know how that goes.
4
SPEAKER_01
Check that box.
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SPEAKER_01
And it turned out that that s what Allie had.
4
SPEAKER_01
And so when they called with the results, they basically told myself and my husband that she had four years to live.
4
SPEAKER_01
And it was just life changed.
4
SPEAKER_01
Life changed in my mind right then.
4
SPEAKER_01
I said, OK, well, I m closing.
4
SPEAKER_01
At that point, I had a billion dollar empire of my cosmetic world.
4
SPEAKER_01
I m closing that book.
4
SPEAKER_01
And I m going to open the book on medicine.
4
SPEAKER_01
And here I am.
4
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I make lip gloss.
4
SPEAKER_01
I can cure disease.
4
SPEAKER_01
Yeah, right.
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SPEAKER_01
But I was going to do it.
4
SPEAKER_01
I was going to find the way and save my daughter because it was just
4
SPEAKER_01
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, and that s where I just thought,
4
SPEAKER_01
In that moment, that was my purpose.
4
SPEAKER_01
Everything came back to me.
4
SPEAKER_01
The disassociating while, you know, the rape was happening.
4
SPEAKER_01
I was like, oh, oh, this is it.
4
SPEAKER_01
This is why I m here.
4
SPEAKER_01
I m supposed to cure this.
4
SPEAKER_01
And it was just like that just became the mission from that moment.
4
SPEAKER_02
Something that makes me crazy is when people say, well, I had this career before, but it was a waste.
4
SPEAKER_02
And that s where the perspective shift comes.
4
SPEAKER_02
That it s not a waste, that everything you ve done has built you to where you are now.
4
SPEAKER_02
This is She Pivots.
4
SPEAKER_02
the podcast where we explore the inspiring pivots women have made and dig deeper into the personal reasons behind them.
4
SPEAKER_02
Join me, Emily Tish Sussman, every Wednesday on She Pivots, as I sit down with inspiring women like Misty Copeland, Brooke Shields, Vanessa Hudgens, and so many more.
4
SPEAKER_02
We dive into how these women made their pivot and their mindset shifts that happened as a result.
4
SPEAKER_02
It s a podcast about women, their stories, and how their pivot became their success.
4
SPEAKER_02
Listen to She Pivots on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
4
SPEAKER_00
Tune in to the new podcast, Stories from the Village of Nothing Much, like easy listening, but for fiction.
4
SPEAKER_00
If you ve overdosed on bad news, we invite you into a world where the glimmers of goodness in everyday life are all around you.
4
SPEAKER_00
I m Katherine Nicolai, and you might know me from the Bedtime Story podcast, Nothing Much Happens.
4
SPEAKER_00
I m an architect of cozy, and I invite you to come spend some time where everyone is welcome and kindness is the default.
4
SPEAKER_00
When you tune in, you ll hear stories about bakeries and walks in the woods, a favorite booth at the diner on a blustery autumn day, cats and dogs, unrescued goats and donkeys, old houses, bookshops, beaches where kites fly, and pretty stones are found.
4
SPEAKER_00
I have so many stories to tell you, and they are all designed to help you feel good and feel connected to what is good in the world.
4
SPEAKER_00
Listen, relax, enjoy.
4
SPEAKER_00
Listen to stories from the Village of Nothing Much on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
4
SPEAKER_04
Get emotional with me, Radhi Devlukia, in my new podcast, A Really Good Cry.
4
SPEAKER_04
We re going to talk about and go through all the things that are sometimes difficult to process alone.
4
SPEAKER_04
We re going to go over how to regulate your emotions, diving deep into holistic personal development, and just building your mindset to have a happier, healthier life.
4
SPEAKER_04
We re going to be talking with some of my best friends.
4
SPEAKER_03
I didn t know we were going to go there Amir!
4
SPEAKER_03
People that I admire.
4
SPEAKER_03
When we say listen to your body, really tune in to what s going on.
4
SPEAKER_03
Authors of books that have changed my life.
4
SPEAKER_03
Now you re talking about sympathy, which is different than empathy, right?
4
SPEAKER_04
And basically have conversations that can help us get through this crazy thing we call life.
4
SPEAKER_04
I already believe in myself.
4
SPEAKER_04
I already see myself.
4
SPEAKER_04
And so when people give me an opportunity, I m just like,
4
SPEAKER_04
For you in that moment it sounds like all of your pains really became your purpose and
4
SPEAKER_05
that can sometimes be the hardest path to purpose because there are several different paths.
4
SPEAKER_05
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,
4
SPEAKER_05
What was useful from your cosmetic background that did transfer over into healthcare and medicine?
4
SPEAKER_05
Or was it just like, none of this is useful and I need to build a different skillset?
4
SPEAKER_05
Because I can imagine that that transition is not easy mentally, emotionally, and of course, logistically.
4
SPEAKER_01
Yeah, it s not easy on any level, spiritually.
4
SPEAKER_01
I mean, you name it.
4
SPEAKER_01
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.
4
SPEAKER_01
You know, there s a million cosmetic companies out there.
4
SPEAKER_01
So it was everyone up to that point always telling me I couldn t do it, that I was like,
4
SPEAKER_01
No, I can do this.
4
SPEAKER_01
I can do this.
4
SPEAKER_01
I didn t know how I was going to do this, but I thought, no.
4
SPEAKER_01
Because as I said, and I really, it s all about for me is with the power of love and intention, anything s possible.
4
SPEAKER_01
And I loved my daughter, and I was going to set this intention.
4
SPEAKER_01
And I d been able to manifest.
4
SPEAKER_01
you know, whether it s been through my creative visualization, I see it in my head, I make the picture.
4
SPEAKER_01
And then I m like, I m going to work to create this.
4
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And I need to find this cure.
4
SPEAKER_01
And I m going to
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be able to, I m going to sit and ask all the questions I put together.
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The first thing I said to myself is I have to learn about this condition.
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I ve got to educate myself.
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And there I cut to, you know, put 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.
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really start learning and just sat there with a group of doctors and advisors that I would just pick
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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
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I have a checkbook and 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.
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I said, we re going to find a cure and this is going to be a model.
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for how we look at curing disease in the world.
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And I mean, I set it on a very big stage for myself, but the biggest thing was always to find a cure and at least find some therapeutics to help me as Allie was suffering at the time.
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what were some of the biggest roadblocks?
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You mentioned one of them there, collaboration.
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What were some of the biggest roadblocks you saw in healthcare in curing these seemingly incurable diseases?
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Because you went in there, of course, as you said, you d worked hard, first of all, to build this incredible company.
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Therefore, you had resources.
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It s not like you just had resources because you inherited them or you had them from somewhere else.
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But even with that,
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you had to learn, bring people together, figure it out.
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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?
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I mean, the biggest thing is, for me, I needed to get to people s brain trust.
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And I really needed to, the way I thought was in, was through their shared humanity and sense of their own purpose.
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Like, always bringing it back to,
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Well, why did you get into this?
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You know, why?
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Why did you decide to be a doctor in the world of MS research or things?
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So that was the positive side.
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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.
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They all wanted sort of their own spotlight for their their findings or their published work.
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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 since my work.
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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 gonna 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 i could say i will pay you tell me who you need to get in the room at the table
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But you re all going to work together and share together.
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So I d say that was the biggest obstacle.
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And then finding people.
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And then, honestly, what became more and more as I went down through this journey, to cure anything, even in a rare disease, I found out that I had to build a blood bank.
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Now, can you imagine, all of a sudden, you re working to find your...
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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.
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We need to have blood test specimens we need the material to do this research so i thought wow now.
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I have to create a repository of blood bank and start collecting blood from patients when I m hearing it s so rare.
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And when Allie was first diagnosed, I was trying to just find one person that had this.
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Now I have to amass an entire blood bank of specimens around the world.
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And that was seemingly, I thought, how do you start?
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How do you do that?
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How i did that 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 go to alaska or she go anywhere literally taking samples and bringing them back that s how i started.
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I now have over 100,000 specimens in my own blood bank and biorepository that is used for drug companies.
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I mean, it s changed the whole landscape.
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But if somebody would have told me, honestly, Jay, that I would be like,
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having to build a blood bank, that I d be doing that.
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I 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?
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You get a blush if you give me your blood because a lot, you know, are women.
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But you get creative and you think about that.
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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.
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Well, 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.
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But you, and you also, I m intrigued because
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When I ve spent time with you and even today, it s not like you re fighting.
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It s almost like you re creating.
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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.
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You started by saying you ve always been a survivor.
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Yeah.
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What do you think is core to surviving difficult situations?
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Is it fighting or is it creating opportunity or what is it?
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You know, I ve never looked at it as, for example, put in the mix there, the thought of being a victim.
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So if you think of being a victim, you think more of fighting.
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So I don t think of myself as a victim.
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It was never like, oh, why is this happening to me?
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How did you not have that?
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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.
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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?
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But you know, that that wasn t in the cards.
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That wasn t my journey or.
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But I ve always tried to I always try to zoom out and look at
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you know why is this you know what what s the way in where can i i always want to do something good and make the good come out of it um that s just how i ve always been and i want to find that way
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And I genuinely always wanna 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.
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And again, going through their brain trust to get them, I mean, think about having to get pharmaceutical companies.
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The fact that I got three drugs made
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People say that never ever happens, let alone in a rare disease world.
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How passionate you have to be about what you re talking about and wanting to... So it s not really fighting for it, it s just...
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helping people find it within themselves.
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That s what I do.
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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.
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I had to find that purpose in the room for all those people.
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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 success point of view, like when you ve invented these three drugs.
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And, but what is, yeah, what have that, what has that achieved?
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What has that stopped?
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And then what are you still trying to figure out?
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So, and I never, I was hateful to get people that invented them because, you know, going to obviously Genentech and where they really, you know, that s what they do.
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But now what I learned, so I started to, people are always going, how are you doing this?
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Like, this sounds crazy.
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You re like making lip gloss and all of a sudden you re getting these drugs made.
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Like, there s a lot in between those, that little journey there.
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And 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.
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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.
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I found the biggest magic was always bringing early on, I brought people together.
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I had, I brought together over, gosh, 40 countries together and hundreds of researchers and scientists and patients together.
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So that s always been so critical in
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in what I do, but what I m doing now is so people have said, well, how have you done it?
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Look at what you ve done.
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Look at autoimmune disease in general, autoimmune disease right now, which is what, you know.
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Allie house and yes she s on a drug now that is more controlling things but i decided as i listen to you know our president which is great talks about cancer and moon shots i thought i wanna do a cure shot.
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A cure shot we don t need to go to the moon to start curing disease here and autoimmune disease.
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and cancer are opposite sides of the same coin.
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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 a lot of other autoimmune diseases.
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So that s really what I m passionate about now.
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And I have to say, I have an amazing team that supports me.
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I couldn t have gone through this journey without Dr. Michael Yeaman, who s head of molecular medicine at UCLA.
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He s the scientist that, you know, we ve gone everywhere from, you know, the Harvards to the Mayo to we re doing work with Verily at Google, looking at biomarkers.
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I mean, he s always by my side and probably one of the smartest people.
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So I m very fortunate that I ve put together a great team of people and they see how far we ve come.
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I m actually looking at how this story ends is I m gonna like friggin  be a big part in working in 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.
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And that was the turning point.
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It was like, you re right, it s not.
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And when I see now all the patients and the parents
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And I just feel if my voice can help give voice to other people, this is what I m doing.
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And for our viewers and for our listeners, how is Ali?
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Allie s doing really well.
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She passed the bar.
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She went to law school.
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She was her own champion.
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I mean, I think early on, she was like, Mom, I don t want to know what I have.
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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.
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But she goes, I know whatever it is, Mom.
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You ll figure it out.
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But Allie s really the one who has figured it out.
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And she s doing really well, and she s
6
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a champion.
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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 with opening for One Direction for years.
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And he s out on the road and I m, you know, going and going to these different institutions.
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And I should say, because as people are going through this and whatever your journey is,
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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
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This can t be, again, that visualization.
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I was like, this isn t going to be the movie where the mom s trying to save the daughter, but then she gets cancer and she dies, or Lorenzo s oil, which people told me about where he dies.
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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 get through it.
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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 if they are, I have people in my family and life.
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Where do they start?
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What do they do?
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Where do they get help?
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What are the best places that you ve seen or places of support, especially if people aren t in a financial, don t have financial capacity to help solve some of those things?
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Well, first and foremost, they have to start within.
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They have to find their voice and not be a victim of it, but go, what can I do?
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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.
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So look for other people that are going through what you re going through and start
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going through that, having people that you surround yourself in life.
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Try to put together a team, even at whatever level.
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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.
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No, but you have a voice.
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And you know if something you re hearing doesn t feel right, getting those second opinions.
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Advocate for yourself.
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That s a really, really big part of it.
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And a big part of what I do,
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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.
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And seek out, just do the research, go online, look at the different things that, you know, and sort of vet them for yourself and see what feels right.
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It s all about
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taking action.
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I m working on another book right now that ll come out next year, but it s called Worrier to Warrior.
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And worry, I always say worry weighs more when you carry it alone.
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So you got to take that worry 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.
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Victoria, you ve been so vulnerable and generous and kind today with sharing your journey, sharing challenging moments.
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And today I just want everyone who s listening and watching to know we have only skimmed the iceberg of the amount of work, the depth, the story.
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And so I highly recommend 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.
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Because like I said, we ve only touched the tip of the iceberg.
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But Victoria, 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.
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And I always ruin it by asking for more details.
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So that s up to me.
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But Victoria, I d like to ask you your final five.
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The first question is, what is the best advice you ve ever heard or received?
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I d say my mom early on said, wash your face, put on some makeup, and just go out there and do it.
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I like that.
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That makes sense.
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That s the makeup alliance.
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And then I started a cosmetic company.
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That makes sense.
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That makes sense.
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What you tell your kids every day.
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Just, yeah, that s great.
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Second question, what is the worst advice you ve ever heard or received?
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You ll never be able to do that.
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You know, you re aiming too high.
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Mm, so true.
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Question number three, how would you define your current purpose?
6
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Oh gosh, I mean that s, my purpose is to cure autoimmune disease around the world, but really is, 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.
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That s really my purpose.
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Question number four, you use this phrase a few times in the interview, like finding your voice, you have to have a voice.
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What is the best way for someone to find their voice when they feel they ve had to be quiet, silenced, or they never had one in the first place?
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Well, I don t believe nobody s had not had a voice in the first place.
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We all have that.
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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.
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Kind of a lot of times I use that visualization of just zooming out and and hearing myself say it.
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in my mind, and then letting the words come out, just like they did when I made my scream and I was afraid.
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So, and those words came out, is be willing to do it.
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Just do it, you know?
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I m just, that s so important to me.
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Just get quiet, center yourself, think about it, and then just say it.
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Move it, move through it, just do it.
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Beautiful and fifth and final question, if you could create one law that everyone in the world had to follow, what would it be?
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If we could all just get back to our shared sense of humanity.
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you know, that really, more than not, people are good people.
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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.
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All the politics, all the other stuff, we re there to help people.
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And if we could just get back to that shared sense of humanity and loving one another, there d be nothing better than that.
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Thank you.
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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?
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I don t know, what do you think?
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People hearing this, will they benefit from it?
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Absolutely, absolutely.
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I mean, you re hearing it for the first time.
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I mean, I meant everything I said.
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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.
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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.
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I mean, I don t know if there s a better story arc for a movie.
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I don t know if,
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It s almost like you couldn t write it.
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Yeah.
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Because it s so powerful that someone would be able to rise from those situations, even, you know.
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third marriage you said?
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Yeah, Bill.
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Yeah, of course.
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Yeah, yeah, yeah, yeah.
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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.
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Yeah.
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To then have the worst news you could potentially ask for.
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Yeah.
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you know, I think, I think it s going to move and help a lot of people.
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I wouldn t have, I mean, I don t know many people who ve lived that life.
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Yeah.
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Well, you know what, I mean, honestly, just the fact that you ve given me the opportunity, because
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You know, 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.
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Getting press early on was like, forget it.
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I mean, it s like, it s not sexy.
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It s not, you know, people are talking about whatever.
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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,
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and patients and people work together, and what s been built, it really is extraordinary.
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I mean, it s been 15 years now.
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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.
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It was all extraordinary, you know, who would think that somebody who didn t graduate high school and, you know, it was all of a sudden those kinds of things.
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How much have you invested now in this journey?
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How much have you personally invested into this?
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I ve put in 80 million dollars of my own money.
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Yeah.
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Yeah.
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That s incredible.
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Yeah.
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And that s that s that s important.
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And that 80 million dollars is really, you know, you look at that, it s hundreds of millions that a pharmaceutical company had to put in.
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And I had to show them and build on a model to show them how they can make money.
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You know, and I could have just, you know, become angry or like, why do I have to do that?
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They can just do that.
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But you have to you have to kind of I sit in everybody s seat always in my mind in the room and go, how do I
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get everyone aligned so that we can all keep moving forward.
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And that was really, really important, is to look at what everybody s needs were in that room, what different countries, different institutions.
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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.
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So everybody had to work with another institution in all the research.
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I think that s the most beautiful thing that you re just using the success you had in service.
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I mean, what better use of success is there than in service to others?
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And now that you re dedicated to helping hopefully prevent and solve autoimmune diseases, I mean, yeah, I feel like you re so right that so many people are misdiagnosed or undiagnosed, diagnosed too late.
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Like I m hearing about it all the time.
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That s what this ll really help, Jay, too, is that because so many people are misdiagnosed with different things.
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Most of the patients that now have what Allie has, they ve been misdiagnosed before the doctors even knew what it was.
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They were misdiagnosed with MS.
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So that s why there s so many more patients than originally they thought.
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And I created, there s an assay that, it s literally a blood test that tells you if you have it.
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How accessible is that for everyone?
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Anybody can get it.
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Anybody can get it.
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I mean, in this case, the doctor, Mark, checked that box for that test.
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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.
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And then when you re not getting treated, you re just having more and more damage.
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How does the app work?
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Anyone can use it from home?
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The app, yeah, it s on your phone.
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Yeah.
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It s just on your phone.
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Could you tell us which, what exactly the name of the app?
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The app is called NMO Resources and you literally download it and it s got everything.
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I mean, it s, it s extraordinary to see there isn t something like this that exists.
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It s totally free.
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It s got everything from the clinical trials that are going on to support groups.
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Anywhere in the world where you are, you can find a physician.
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It talks about what a relapse looks like.
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I mean, if you re having an attack, you go into an emergency room, you show them the app, everything is right there.
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I mean, it s really extraordinary.
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I wanted something that people would have in real time.
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If you had this for all conditions, I mean, people creating something like this is amazing.
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Are you trying to do that for other autoimmune diseases as well now?
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What I m doing now, especially in the one with Ali s case, is a lot of times in different conditions, you don t know if you re having a relapse.
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So I m working with Verily, which is part of Google,
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in helping find all the biomarkers.
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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.
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So, you know, thinking about technology now with where we re going to be with AI and all of these things.
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I mean, when I started, it just, I think there was maybe three papers that were published on what it used to be called before NMO Devix disease.
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And now there s thousands that have been published since I ve been doing this work, literally thousands.
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And it s been 15 years that you ve been dedicated to this now.
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Yeah, 15 years I ve been doing this.
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15 years I ve waited to talk to you, or to talk in general, just to get the message out there.
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Because it s really, really tough.
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And I know there s a lot of people in the world that are suffering with these kind of conditions and diseases.
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And there s probably a lot of parents
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that are trying to figure it out and figure out how to make enough noise or get the attention because autoimmune disease is not 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.
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When you treat one, you get the other.
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So you re much more vulnerable to that.
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And what s that gap?
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Because you always feel, I guess, we assume that so much money is going towards solving cancer and solving this.
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Is money the issue?
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Is time the issue?
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Is collaboration the issue?
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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.
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A hundred percent, you know, we re pretty much, I ve put in $80 million with my own money.
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of our family money, every penny goes to research and science.
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A lot of places, it just doesn t.
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Or it s not put to, like, everything I do is tranched.
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I have to see results.
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Everything has to be translational, meaning bench to bedside.
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If you don t see that it s going to
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to be really on the critical path to make a difference, I don t fund it.
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So a lot of money is spent on things that scientists, and God bless them, but they ll research the head of a pin forever.
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I mean, you have to sort of be very strategic, and you have to go, OK, where is the gold in this that I m going to fund it because it s really going to make a difference?
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And why is it important for the people to make a noise?
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Because like you said, they can t help solve it.
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The solutions don t exist right now if someone s struggling.
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what s your take for the prevention, but also like the living with for someone who, you know, what is that?
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Obviously some of that for NMO is in the app, but if it s autoimmune diseases in general.
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Oh, yeah.
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I mean, I think that basically when I would tell anybody that has an autoimmune disease, look at this and look at the things that we recommend.
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I mean, obviously you ve got to be speaking to your own
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doctors and following your own medical advice because, you know, I m not a doctor.
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I m like Dr. Mom, you know?
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But I would say that, you know, 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.
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So you have to really advocate and do the research and do the deep dive.
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Don t just go with what the one doctor may say to you.
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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.
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That s what I had to do.
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I mean, I had to really learn it and study it and understand it.
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So you just can t be a victim of it.
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And I know that s a lot easier said than done, especially when you re,
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in pain and you re struggling and you don t have money, but you got to find a way.
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You just got to find a way.
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I always find a way.
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Thank you, Victoria.
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Thank you.
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Thank you so much.
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It was beautiful.
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Thank you.
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I mean, I was with the whole time.
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Yeah, exactly.
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Aw, thank you.
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I think it s one of the, you know, it s personal story to me is the best way to help inspire and enliven others.
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And I think everything you shared today will touch people s hearts and move them into action, so thank you.
8
SPEAKER_05
Aw, thank you.
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Well, thank you.
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SPEAKER_05
Thank you, so grateful.
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Listen, you gave me this opportunity to say.
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Well, I m grateful to call you a friend.
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And you ve told me, you know, we ve talked about so many of those things before, but even for me to sit in here, you in this way and knowing how it s going to impact my community is going to be really beautiful.
8
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Yeah.
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Thank you.
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Yeah.
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When we do a lot of, you know, I do a lot of research and work in India as well, like worldwide.
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So, you know, it s just so many people that
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they just don t have the access or they don t know or they are too afraid to, you know, so anything that you can do, I mean, you re the best.
8
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I m here to help.
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I believe in it.
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I agree with you.
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I don t, I don t know if there s any bigger thing to solve than healthcare.
8
SPEAKER_03
Like I don t, I don t think there s anything more important in the world than solving incurable diseases because everyone should be able to live a healthy and
8
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Yeah.
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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.
8
SPEAKER_05
But when you actually that s when I honestly when people started saying to me, you know, this is actually going to change MS or this is actually going to change lupus and rheumatoid arthritis.
8
SPEAKER_05
And I was like, really?
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Like then I just thought this is this is this is the this is the work.
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This is my life s work, you know.
8
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Thank you, Victoria.
8
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Thank you to everyone who s been listening and watching back at home.
8
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Please make sure that you share this with friends you know would be inspired by it, moved by it.
8
SPEAKER_03
And please let me know what really resonated with you and stood out for you.
8
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A big thank you to Victoria again.
8
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Thank you.
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And thank you so much for your friendship and your service.
8
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Victoria means the world.
8
SPEAKER_03
Thank you so much.
8
SPEAKER_03
Thank you.
8
SPEAKER_03
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.
8
SPEAKER_01
Acknowledge that there is surprisingly little known about the relationship between nutrition and health.
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And people are going to be shocked to hear that because I think most people think the exact opposite.
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Let s be honest, life is stressful.
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It s work, it s relationships, and the state of the world.
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But there s a way to bring that stress level down.
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Calm.
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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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There s music, meditation, and more.
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Calm makes it easy to de-stress.
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You can literally do a one-minute breathing exercise.
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Personally, I love the soundscapes.
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Nothing like a little rain on leaves to help soothe my nervous system.
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I ve actually been working with calm for a couple of years now and I d love for you to check out my series on reducing overwhelm.
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8 short practices, quick relief.
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SPEAKER_03
Right now, listeners of On Purpose get 40% off a subscription to Calm Premium at calm.com forward slash j. That s c-a-l-m.com forward slash j-a-y for 40% off.
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Calm your mind.
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Change your life.
8
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Parents, if you ve ever experienced bedtime battles with the kids, I m gonna let you into a little secret.
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The Koala Moon podcast has revolutionized over 20 million bedtimes, with parents like you calling it life-changing and the perfect nighttime routine.
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With original kids  bedtime stories and cozy sleep meditations, every episode has been specially designed to make bedtimes a dream.
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Listen to Koala Moon on the iHeartRadio app, on Apple Podcasts, or wherever you get your podcasts.
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At one of the most famous restaurants in the world, there s a table in the corner where the most incredible conversations on the planet are happening every week with owner Ruthie Rogers and amazing guests like Martha Stewart.
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I did have an affair with one of his best friends.
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Jimmy Fallon.
8
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You want a zip line over your dad while he gets attacked by alligators.
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And Paul McCartney.
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John and I hitchhiked to Paris.
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We ve saved you a seat.
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Ruthie s Table 4.
8
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Listen to Ruthie s Table 4 on the iHeartRadio app or wherever you get your podcasts.
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Tune in to the new podcast, Stories from the Village of Nothing Much.
8
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Like easy listening, but for fiction.
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If you ve overdosed on bad news, we invite you into a world where the glimmers of goodness in everyday life are all around you.
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I m Katharine Nicolai, and I m an architect of cozy.
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Come spend some time where everyone is welcome and the default is kindness.
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Listen, relax, enjoy.
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SPEAKER_04
Listen to stories from the Village of Nothing Much on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.