On Purpose with Jay Shetty - #1 Way to Find Confidence Within When You Have Low Self- Esteem with Victoria Jackson
Episode Date: March 15, 2024Today, let's welcome to the On Purpose podcast cosmetics entrepreneur, medical research trailblazer, and Women’s Hall of Fame inductee, Victoria Jackson. Victoria founded the global powerhouse brand... Victoria Jackson Cosmetics where she irrevocably altered the beauty landscape with her creation of the “No Makeup” makeup aesthetic. She and her husband, Bill Guthy—founder of the marketing behemoth Guthy-Renker—established The Guthy-Jackson Charitable Foundation to fund research on NMO treatments and a potential cure. Victoria shares her lifelong experiences, from the anxiety of feeling different to the profound questions about our existence and the roles we play in this world. She opens up about the darkest day in her life as well as the trials of transforming passion into a successful enterprise. These stories aren't just about overcoming; they're about thriving, giving hope to those striving to make a meaningful impact in their lives and the lives of others, especially when facing seemingly insurmountable obstacles. In this interview, you’ll learn: How to stay resilient in the most difficult circumstances How to move on from trauma How to turn passion into a career How determination can change lives Why we never stop learning The episode is a beacon for anyone seeking to make sense of life's complexities, offering insights into building relationships, handling adversity, and finding one's calling. With Love and Gratitude, Jay Shetty What We Discuss: 00:00 Intro 04:38 I Always Felt That I’m Different 05:51 We’re All Trying to Figure Out the World 06:38 What Were You Most Anxious Of? 08:55 What is My Purpose? 11:29 Love for Teaching and Sharing Knowledge 13:58 Trust the Process and Have Patience for Yourself 17:13 “The Night I Nearly Lost My Life” 23:13 How Do You Overcome Trauma 25:04 “I Wanted to Give Women Hope” 27:42 Transforming Passion to a Successful Business 32:32 Navigating Relationship Can Be Challenging 35:56 “My Daughter Had Four Years to Live” 39:54 Prove It To Them That You Can Do It 42:39 The Biggest Roadblocks in Healthcare 47:37 How Do You Survive Difficult Situations? 49:48 Finding Cure For Alli 53:21 Going Against All Odds 55:00 Finding Answers and Taking Actions 57:48 Victoria on Final Five 01:03:11 It’s Hard to Get People to Pay Attention 01:06:43 Download the NMO Resources App 01:09:13 Strategic Allocation of Funds 01:10:32 You Just Have to Find a Way Episode Resources: Victoria Jackson | Website Victoria Jackson | Instagram Saving Each Other: A Mother-Daughter Love Story The Power of Rare: A Blueprint for a Medical Revolution Victoria's latest book, "We All Worry, Now What?" is now available for pre-order on Amazonhttps://www.amazon.com/All-Worry_Now-What-Victoria-Jackson/dp/1595911324See omnystudio.com/listener for privacy information.
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Hi, I'm Laura Vanderkam.
I'm a mother of five, an author, journalist, and speaker.
And I'm Sarah Hart Unger, a mother of three, practicing physician, writer, and course creator.
We are two working parents who love our careers and our families.
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My life changed.
When Allie was diagnosed at 14, she's saying she has an eyeball headache and I'm thinking,
oh, you know, okay, you know, and she says her vision's getting a little fuzzy and I'm
just thinking, well, I'm, you know, I'm sure it's nothing.
We'll go see the eye doctor.
We'll give you some drops.
And ultimately, the neurologist is doing a series of tests, wanted to do a spinal
tap, a lumbar puncture.
And I'm like, why?
Like she's just got something going on with her eyes.
What are you all doing?
You know?
And so when they called with the results, they basically told myself and my husband
that she had four years to live.
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. All I want you to do
is click on the subscribe button. I love your support. It's incredible to see all your comments
and we're just getting started. I can't wait to go on this journey with you. Thank you so much for subscribing.
It means the world to me.
The number one health and wellness podcast.
Jay Shetty.
Jay Shetty.
The one, the only Jay Shetty.
Hey everyone, welcome back to Unpurposed,
the number one health and wellness podcast in the world
thanks to each and every one of you
that come back every week to become happier,
healthier and more healed.
And that's our mission here to introduce you
to thought leaders, teachers, academics, experts,
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 I've 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 honored today
to get to introduce you to her.
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. Victoria founded the
global powerhouse brand Victoria Jackson Cosmetics. She and her husband, Bill Guthrie, founder
of the marketing behemoth Guthrie Renker, established the Guthrie Jackson Charitable
Foundation to fund research on NMO treatments and a potential cure.
Victoria's unrelenting determination proved effective.
In 2016, the foundation developed
the first ever NMO therapeutic
and soon after three therapies received FDA approval.
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,
the author of two incredible books that I highly recommend, Saving Each Other, which of course,
will be diving in today, and this book, The Power of Rare, a Blueprint for a Medical Revolution.
Please go and grab both of these books.
You're going to be hearing about the insights
from both of them in this conversation.
Victoria, welcome to On Purpose.
Thank you. It's so nice to be here.
I've been just waiting for the opportunity to talk to you.
I'm a big manifestor.
And so when I started listening to you, Jay,
I was so inspired, honestly, that I just was like,
I've got to, there's going to be a time.
I'm sitting across from him.
We're having this conversation.
So thank you so much.
I love that.
And our paths have just crossed so organically.
We have a lot of mutual friends
and we bumped into each other ages ago
at this great fundraiser that Ellen did.
Yes. Called Gorilla Palooza, into each other ages ago at this great fundraiser that Ellen did.
Yes.
Called Gorilla Palooza.
Yes.
Which was to raise money for the Diane Fosse and Ellen DeGeneres Fund.
Yeah, it's great.
Which is incredible.
What she's doing.
Yeah, amazing.
Have you been out there yet?
I've not.
It's amazing.
I got to go out with them last year and it was unbelievable.
But we met there.
Yes.
And you were one of these people, and I just want the audience to know, like you were one of these people that instantly
was talking to me from your heart and I felt it.
Then you were arranging for me to go and meet the Pope,
the next thing I knew,
and it didn't happen because of the pandemic,
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.
What an honor, thanks to you.
And I had that very special invite to go to the Vatican,
which of course through to the pandemic didn't happen.
And then we've had these wonderful connections,
even with your daughter and your home and anyway,
so many different things.
But I feel like your journey's truly unique
and incredible in so many ways.
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?
You know, I always think about how,
I felt like I was always different.
I say that I was born early.
I was born in the six and a half month, and so I lived in the hospital for three months
before I even came home.
So I think because I've always struggled so much with anxiety and worry and, you know,
all of that, I think I was sort of born early to get a head start on all of it.
So when I think of my early years, I really think of a young person that was really struggling
and just trying to really find her place in the world and seemed like since I did come
in early and was struggling just to sort of make it through in those very, very early
times because this is going back a while.
And now I know for preemies,
they have a lot more technology than they did then,
but I've always been in survival mode,
I think my whole life.
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.
Do you think that the struggles that you had
have changed towards the struggles that you had have changed towards the struggles
that young people have today?
Or do you think that they're the same thing,
they're just differently experienced?
I think they're definitely,
I think they're the same thing, 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, I mean, so they were all,
you're still trying to figure out your way in the world.
So I think it may look different now,
but I think that's probably why even in raising kids,
I understand my kids can talk to them on a level
of understanding whatever anxiety they're going through,
but it's just put out on a different stage now
and much bigger stage. And so that makes it a little more difficult.
What was the thing you were most anxious about growing up?
What was the thing that kept you up at night
that made you uncomfortable, that made you nervous?
What was that?
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.
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 she's so young, she didn't really know how to, you know, bond with me.
And I think that was tough.
So I was somebody that was always seeking approval
and looking for that love and just trying to figure out who I was.
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.
It was just something that I remember early on just feeling in a unique way.
And how did you process that? Like what was your antidote or?
I mean, I think there's times you're thinking,
you know, am I special?
Is there a reason I'm here?
But it just manifested in a lot of anxiety.
And so, you know, you're always just feeling like
there's some shoe that's gonna drop
or something that's gonna happen.
And I lived a lot of my early years like that
as I kind of keep going back to this finding my way.
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 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 I could definitely attest to that.
I felt in my teens, I was trying to fit in
and I was trying to find my way. And I was anxious about, did people think I was trying to fit in and I was trying to find my way.
And I was anxious about, did people think I was in with the crowd?
And, you know, and I think we all go through this.
What was really interesting for me was I think I've kept trying to find my way,
which is why I've lived so many different lives,
because I've never wanted to not take a step forward.
What did you imagine would be your first career path? because I've never wanted to not take a step forward.
What did you imagine would be your first career path
or what did you imagine would be your first venture
and what did it end up being?
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.
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? 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 creative, you know, I definitely wasn't going to be the academic,
I ended up sort of, you know, ditching school a lot due to a lot of kind of unsettling things at home.
And so I was trying to figure out what was the way
that I was gonna really express myself
and knowing that I didn't come from a family that had money.
So I was gonna have to figure that out for myself.
But I knew that I was creative
and it probably, I started doing makeup.
And I think when I started doing my own makeup
doing friends makeup I thought I genuinely because I struggle with such low self-esteem
I mean it's gotten a lot better over the years 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.
And I really thought once I started to make up people
and give them this sense of like,
they looked better and felt better,
I had some passion around that.
It was something that I thought,
oh, this is a skillset that I can really perfect.
And, you know, I love the idea.
And I'm the kind of person, if I can do it,
then I want to show everybody how to do it.
It's like, oh, if I can do this, you can do this,
and here's how.
So if social media existed,
you would have been one of the first beauty influencers.
That's what would have happened,
because makeup was one of the big things
that took off on social media in the early days.
Absolutely, 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.
So that's what I was doing.
I was putting all the cosmetics together.
Here's how to use them.
Long before I had my own radio show,
before there were podcasts where I was doing
makeovers on the radio.
And they said,
if you can actually get people to call in
and do a makeover on the radio,
you can have the air time.
So yeah, this were the early days.
And 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 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.
How does that switch happen?
Because I think so many of our listeners
are in that position right now, where they feel anxious.
Maybe some of them have imposter syndrome,
maybe some of them are listening and they're going,
Che, I just don't know where to start or maybe I know what my passion is,
but I'm not good enough and you know, we have this lack of belief in ourselves.
Yeah.
How did you switch from I'm anxious to I actually like teaching and sharing?
Yeah, well, by the way, while I was teaching and sharing,
I was also anxious.
So I managed to pull double duty at the same time.
I just went for it.
You know, so for me, for example,
I wanted to get in the world of makeup.
If you were to look at my portfolio
and go through my very early, early, you know,
photographs of makeup, not the best makeup in the world.
You know, so like I had to learn it and perfect it 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. I was the original person sort of doing that
in the in the late 80s when everybody had on tons of makeup. Explain that to us, break that down for people who may not have either been around
or may not know fully what that was in the beginning of it.
Because I think now, yeah.
In the 80s, you think about like shoulder pads and the music videos that were out there,
there was a lot of makeup.
And my whole thing was, and there really wasn't even a makeup that existed at the time.
Let's talk about just even a foundation, a base color that you use on your skin now
to even out your skin tone. That was more natural. Everything was these kind of crazy tones or pinks
or oranges. And I wanted to just help women look beautiful, look great, 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.
And so I had no idea how to actually create makeup.
So I just started as a makeup artist.
I started mixing in my garage pots and pans
and making up concoctions that I would use
on my makeup jobs.
And that's really how I started that.
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.
And it's okay and it's good to know that 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.
And the truth is, 99% of the time,
the first thing you put out there is never going to be that great.
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.
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.
Yeah. And you have to just have patience with yourself and patience with the project.
But you have the process.
But you have to just be willing to even put yourself out there and try. For me, I was like, I want to do makeup, I want to do for magazines and things like
that. Okay, how do I start contacting photographers and building a portfolio and just be willing
to, you know, even women, they'd be so afraid to do their makeup. I'm like, what's the
worst that's going to happen? You're not going gonna like it, you wash it off, you know? 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?
And I'd have women go, I want my makeup to say pullover.
You know, a lot of women that were, you know,
working the streets or whatever, and I'd be like,
okay, let's change the message on that.
Let's talk about, you know, self-respect.
And I would see the energy of hundreds of gals in there
that were, you know, really ready to hear something
and how it just evened out, leveled out the room with people that when they saw themselves
kind of a before and after, it really changed the whole energy.
So I got really passionate about this whole thing I ultimately called
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've been, I think, I think, due to 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, I was one of
the early victims in 1973 of the Pillow Case Rapist.
And that left me with, obviously, a lot of emotional scars and things that I've
spent a lifetime working on, but very claustrophobic. 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 and it
really was very instrumental and helpful in the other parts of my life as I say, as you talked about
mascara to medicine that were really important.
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I'm glad you brought that up because we've spoken about that offline before.
Could you walk us through and explain a bit more about the Peloquist rapist
just to get a sense of who that was, what that was, etc.
To get a sense of and exactly the experience you had because I just, 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, because if someone's unaware, it can be easy to look at your journey.
And 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.
They've made it, they've achieved it, they shouldn't have anything
to worry about.
And then when you kind of look at someone's life
in full perspective,
you recognize there's so much more to it.
I often give the analogy to people
of if you walk into a movie halfway
and you see someone's life,
you might think they have the best life in the world.
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.
So for that reason, I'd love for you to shed some light
and context on that.
Yeah, I think you're exactly right.
I mean, there's this snapshot and then there's the film.
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 there was a reason that
I was here and that purpose 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.
But I did always have that feeling of somebody, as I said, that was going to get me.
And to put a little context to California has had,
there was the pillowcase rapist in the 70s,
and then as if we all needed another pillowcase rapist,
there's been another one since,
but the pillowcase rapist that unfortunately
was involved in my early days in life
came into the house when my whole family was home.
We lived in a duplex.
It was actually in West Hollywood.
As again, I used to, because I felt I was always
a target of potentially something,
I would get teased a little bit.
And I had an older brother that would sometimes tease me.
And so, he's a very nice guy, but sometimes people just, I think nobody ever thought
that anything was gonna happen to me.
And one night when I came home,
it's that sort of really scary scene you see in a movie
where you're in your room and I had the room
off the back of the house and I look up in the mirror
and I see somebody right behind me,
and it's that awful thing and you're like in a ski mask,
holding something with it,
looked like a dish rag hanging over it.
And I thought it was my brother maybe playing a joke,
and I turn around and I'm like, you know,
what are you doing?
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. And 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. And he had, you know,
killed my entire family and I was the last one. And without going into all the horrible details of it,
it was definitely a situation where for the first time,
I really experienced 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. And it was like really looking down to be above what was happening to my body and to the situation at the time
and obviously thinking about my family.
And it was like really looking down and I just thought,
wow, I'm 17, I was just about,
I thought to graduate high school.
And I thought, I can't believe it ends here.
You know, like this doesn't feel like the end of the story.
There's a reason I'm here.
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 that would be, you know, obviously lights out
for you.
And when I saw that, as he was starting to put it over my head, and that would be, you know, obviously lights out for you.
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,
and you know where you have that,
where you're thinking is that you're so freaked out,
like is the sound gonna come out?
Am I gonna just be screaming in my head?
But I was like, on three, I'm going to scream,
and I'm going to scream really loud. And this is either going to be the end of me,
because he did have a knife and he did stab my leg and my stomach and part of my face that I
thought, well, this could be the end, but I just in my head counted to to three, and on three I screamed and he dropped the knife.
Surprisingly, he pulled off his ski mask. I couldn't really identify him, but I guess
again that another sort of calling card that they knew it was him, and he ran out. And
my door in my bedroom, I remember, you know, sometimes would get stuck and he's like trying
to pull to get out and I'm like, oh my gosh. So it was just and then obviously I ran upstairs to find out that my parents they were asleep.
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.
It's you know, we didn't really have security in the house per se then it was really just locked the door and he had unlocked.
I never have a dog door again,
the door and that's how he had gotten in.
I literally got chills listening to that story
because it's so, you know,
it's such a horrific, horrendous thing
to have to live through.
And I'm grateful you shared it with us.
Thank you so much for being vulnerable and open
and sharing that.
How do you not let that let you live in fear
for the rest of your life?
What's the next thing you do from something like that?
Because that would be, if you didn't do anything ever, it would be
completely valid because it's such a painful experience to go through.
Yeah.
How do you respond?
How do you react?
What's the first thing you do after something like that?
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, but you know, there
was just, I knew that I could never go back in my house.
I left, I didn't graduate high school. And I got married as soon as I turned 18. I didn't want to
be alone. So for me, it really manifested in fear of being by myself, of somebody getting me again.
But I also knew that there just was a reason that I was here.
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?
Like, how do people go down these roads?
You know, what is it that, you know,
makes somebody make the choices in their life?
And I just knew that for me, I wanted to find what it is ultimately that I was supposed to be doing.
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. I thought I can get my own little scholarship there
and go and, 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.
So I just, I started there really with no money and, and that vision and decided that that's, that's what I was gonna do. It's a tough question, but did you get an answer when you started visiting the prisons
of why people did certain things?
Did you find or discover anything or hear anything?
And on top of that,
did the pillowcase rapist go to prison as well?
Yes.
The pillowcase rapist was finally caught in prison
and he's no longer with us.
He's gone, thank goodness. No sadness around
that for me. So yeah, going to the jails, you really see, I mean, there were times that
I would go because after going 20 years and going, you know, every other month, that's
a lot of visits and you hear a lot of different people's stories. And I remember going at
times where there was a mom, a daughter and a grandmother, different people's stories. And I remember going at times where there was a mom,
a daughter, and a grandmother, they were all there.
And it was just like, wow, how does this happen?
And so there was a lot of stories of, you know,
in my mind too, because I didn't want to judge.
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 judge.
I wanted to just stay to my message, which I could see that doing these makeovers and
people seeing themselves differently, especially women who had maybe
tattooed like crazy eyebrows or whatever it was that had really sort of changed them into
just somebody that they look different, but who they were inside was very different.
I wanted to get to that and I wanted them to feel that you know you may be in jail today but you know when
you get out tomorrow or when you get out you know there's a whole new world out there and there can
be a whole new you out there and that was that really took on the life of of the power of mascara
and obviously it was never about selling them my cosmetics or anything like that, because I'm very much for women
and whatever makeup they like and it works.
Absolutely.
No, and I think it's incredible
how much our appearance does affect our confidence.
And I've seen it,
there are so many of these great videos on social media
of a lot of hairdressers and barbers going onto the streets
and doing free cuts for the homeless.
And you hear their reaction.
I've seen some of these videos where
you hear their reaction before and after,
and how they feel about looking at themselves in the mirror
and how it can be such a boost for confidence as well.
And so that definitely resonates.
How did it go from being your passion
and something that you are so connected to
as a way of helping people build self-esteem
to then becoming a very successful business?
There's lots of steps in between.
What were some of the key things you think transformed it
from a great small business
to something quite successful?
Well, I think basically it's really in the world of the no makeup makeup, nothing existed.
You know, and especially so you think about in, you know, when you're in the jails, 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 600 products over the course of 13 years.
But my foundation, which I sold millions, millions of units of,
was just based on
more natural looking skin tone shades that looked like you didn't have layers of makeup
on.
So that really came from not only the jobs that I was doing, but from all those years
of going to the jails and really wanting to help women look like themselves and not pile
on all the makeup.
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.
I know what they are, yeah.
That's a directory that...
Yeah, there's great ads where you have to climb on them during Christmas.
Exactly. And you're going and I found a cosmetic chemist and said, Hey, you know, I want to,
this is what I want to do.
I want to create these shades, this textures, these fields.
And I started.
And then while I, again, wanting to teach what I do, um, and never having graduated
or gone to college, I thought, you know what?
I want to teach this.
I'm going to call UCLA. They have an extension program. Maybe I could teach some of what I'm doing as a Hollywood
makeup artist and teach that. I did that for 10 years as an extension course that was, again,
sold out every quarter. People wanted to learn how to do it, whether it was, I had so many men taking it,
guys that maybe just wanted to meet gals,
you know, and do their makeup.
But it was another way that I could just see
people wanted to connect in this way.
So I thought, this is great.
And then through doing that at UCLA,
one of my students actually said,
you know, I know this group of guys
that are selling products through television.
And I said, wow, I think I have a great idea
of how to sell products through TV, color cosmetics,
which no one was doing at the time
because this is the late 80s.
And I hadn't really perfected my kit,
but you know, we did that little bit of that fake it
till you make it and act as if.
So when she put me together with the guys,
I basically said I have this idea for these color kits,
you know, peach pink and red,
and I'll put all of the colors and products
and things you need together,
and then I'm gonna teach you how to do it.
And basically, that long story short,
they decided to roll the dice on that and shoot
an infomercial.
And the very first infomercial I did with two celebrities at the time, Ali McGraw and
Lisa Hartman, we started doing a million dollars a week in sales.
I mean, clearly there was an appetite for women wanting to know how to do their makeup and feeling that confidence
and reassurance that I tried to give in my
three hour tutorials that you never see now.
That's incredible.
That's amazing.
And did you find that building this business
and helping these people and helping your customers,
but also women that you met in the prisons, did that help how you felt about yourself
and what you'd been through or was there not a correlation?
Was healing a part of that or was healing having to happen separate of that?
Yeah, healing is a part of everything.
I think we all just, you know, healing happens whether sometimes we even know it or not.
It's on like a cellular level.
So, you know,
it's whatever piece of what you're doing at the time. I've gone through so many different stages
of healing because I've gone through so many different experiences as I said, you know,
as my life has gone from like what I look at in the two parts, you know, the mascara to medicine.
So it's all of that journey has informed me
and my healing in so many different ways.
Did you find that,
you were saying that your experience
made you rush into not wanting to be alone
and obviously you got married very young.
Did you find that led to some codependency
which caused challenges in relationships?
Or did you actually, was that something
that you feel your partner was good at navigating
and dealing with because I can imagine that
when you don't want to be alone and of course,
based on the traumatic experience that you had,
it's very valid, but I wonder how that affects
the other person as well and how you navigated that,
especially in the early years.
Well, I think it started even earlier
because I had, as I said,
my parents had a lot of problems together
and my biological dad put me up for adoption
when I was nine years old.
So my stepdad had adopted me.
And so I really, very early on,
I'd say really never felt how to have, how to have a relationship, especially with a
father, with a man, and the fact that I'm now married. This is my third time. 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 was afraid and I was still trying to figure out me. And so I'd
definitely say that's been a theme and even now I've worked really hard, you
know, and especially in raising three kids. You know, when you have your first
child you really have to think about all of your own stuff and there were times
where I always say, you know, I didn't just hang my hat on my son, I hung my wardrobe.
I mean, you bring a lot of your stuff.
So it's been really 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 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 world, in your life.
I've often spoken to doctors today and experts
and they talk about how much we need to look at
our genetic past and our history and our family of health.
And it's so interesting how on the physical level,
that's true, and it's true on the emotional level as well.
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 superhuman in the beginning.
Some of us feel that way for a long, long, long time.
And it's almost like the earlier we've recognized
that our parents are humans, just like we are,
and we all have challenges and flaws,
that sometimes the healthier conversations and connection
we can have with them as well.
Your journey with your children
has been a labor of love in so many ways.
And I want to talk about Ali,
who I had the pleasure of meeting,
who is your co-author on this book,
and has been at the core of your journey and connection
to the medical world from mascara to medicine
and looking into that world.
For you, as you said earlier, you were like,
I didn't really feel like I was loved in that way.
Walk me through what it feels like when your daughter,
who you love so deeply gets
diagnosed with an illness that is very rare. And on top of that, you hear she doesn't have
very long to live. I just can't imagine. I'm not a parent, but I can't imagine. And therefore
I can't imagine what that feels like. Can you walk us through what that moment feels like
when you've raised someone for, I think, what, 14 years?
And, you know?
Yeah, I mean, my life changed.
You know, my life changed when Ali was, you know,
I have three children and when Ali 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.
And she says her vision's getting a little fuzzy and I'm just thinking, well, I'm sure
it's nothing.
We'll go see the eye doctor, we'll give you some drops.
And you don't think anything of it.
And then all of a sudden I find out
through going through to the eye doctor
that she does an exam and says
she's got this optic neuritis
and we need to find out optic neuritis
is the swelling of the optic nerve
and we need to find out what's going on
and go to an ophthalmologist
and
find out that you know, and now I'm going he's saying you've got to go to a neurologist and
ultimately
the neurologist is taking a series of doing a series of tests wanted to do a
Spinal tap a lumbar puncture and I'm like why like she's just got something going on with her eyes. What are y'all doing?
you know and and I'm like, why? She's just got something going on with her eyes. What are you all doing?
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, oh, 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. And of course, you know how that goes, check that
box and it turned out that that's what Ali had. And so when they called with the results,
they basically told myself and my husband that she had four years to live. And it was
just life changed. Life changed. In my mind right then, I said, okay, well, I'm closing,
at that point I had a billion dollar empire
of my cosmetic world, I'm closing that book
and I'm gonna open the book on medicine and here I am.
I make lip gloss, I can cure disease, yeah, right.
But I was gonna do it.
I was gonna find the way and save my daughter
because it was just, I mean, it takes you to your knees.
It takes you to the floor.
It just, the air goes out of the room.
You know, you're just like, you don't even know where to begin.
And you literally just have to start somewhere.
And that's where I just thought in that moment, that was my purpose.
Everything came back to me.
The disassociating wall, the rape was happening.
I was like, oh, oh, this is it.
This is why I'm here.
I'm supposed to cure this.
It was just like that just became the mission from that moment. group of hopeful romantics who are putting their trust in Abuelita to find them a date.
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The Therapy for Black Girls podcast is the destination
for all things mental health, personal development,
and all of the small decisions we can make
to become the best possible versions of ourselves.
Here, we have the conversations that help black women
dig a little deeper into the most impactful relationships in our lives.
Those with our parents, our partners, our children, our friends, and most importantly,
ourselves.
We chat about things like what to do when a friendship ends, how to know when it's
time to break up with your therapist, and how to end the cycle of perfectionism.
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. Listen to the Therapy for
Black Girls podcast on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
Take good care.
For you in that moment, it sounds like all of your pains really became your purpose and that can sometimes be the hardest path to purpose because there
are several different paths.
There's passion, there's a profession, there's people you love. But then when it's your pain, your pain of seeing your child suffer and getting
news like that, what was useful from your cosmetic background that did transfer
over into healthcare and medicine, or was it just like, none of this is useful and
I need to build a different
skill set because I can imagine that that transition is not easy mentally, emotionally
and of course logistically.
Yeah, it's not easy on any level spiritually.
I mean, you name it.
What I drew upon more than anything was everyone, my whole career, my whole life has always said,
oh, you know, even when I was starting my cosmetic company,
oh, you can't do that.
You know, there's a million cosmetic companies out there.
So it was the, everyone up to that point
always telling me I couldn't do it,
that I was like, no, I can do this, I can do this.
I didn't know how I was gonna do this,
but I thought, no, because as I said,
and I really, it's all about for me, it's with the power of love and intention, anything's possible.
And I loved my daughter and I was going to set this intention. And I'd been able to manifest,
you know, whether it's been through my creative visualization, I see it in my head, I make the picture,
and then I'm like, I'm going to work to create this,
and I need to find this cure,
and I'm going to be able to,
I'm gonna sit and ask all the questions I put together.
The first thing I said to myself is,
I have to learn about this condition,
I've gotta educate myself. And there I cut to myself is, I have to learn about this condition. I've got to educate myself.
And there I cut to 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
and really start learning.
And just sat there with a group of doctors and advisors
that I would just pick
from there in the world of MS or in lupus or rheumatoid arthritis and these other auto-immune
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 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.
I said, we're going to find a cure.
And this is going to be a model for how we look at curing
disease in the world.
And I mean, I said 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.
What were some of the biggest roadblocks?
You mentioned one of them there, collaboration.
What were some of the biggest roadblocks you saw
in healthcare
in curing these seemingly incurable diseases?
Because you went in there, of course, as you said,
you'd worked hard, first of all,
to build this incredible company.
Therefore you had resources.
It's not like you just had resources
because you inherited them or you had them somewhere else.
But even with that, you had to learn,
bring people together, figure it out.
Like 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 teams?
I mean, the biggest thing is for me,
I needed to get to people's brain trust.
And I really needed to do do the way I thought was in
was through their shared humanity and sense of of their
own purpose, like always bringing it back to, well, why
did you get into this? You know, why? Why did you decide to be a
doctor in the world of MS research or things? So that was
the positive side. The reason I had to do that is because it was
very clear to me very early on that people don't share or work together.
They all wanted sort of their own spotlight for their findings or their published work.
But in the world of rare disease, which I found out at the time, they were saying there was maybe 10,000 people worldwide that have this.
Since my work, there's over a million people and counting that have this because it's so misdiagnosed,
whether it's MS or other things.
So I had to get people to work together and share.
That was going to be the biggest obstacle.
But because I had the power of at least having a checkbook
and always feeling very blessed and fortunate for that,
that I could say, I will pay.
You tell me who you need to get in the room and at the table, but you're all going to work together
and share together.
So I'd say that was the biggest obstacle.
And then finding people.
And then honestly, what became more and more as I went down through this journey to cure
anything, even in a rare disease, I had to,
I found out that I had to build a blood bank.
Now, can you imagine, here's all of a sudden
you're working to, you know, find your way
with just getting researchers and scientists to the table,
but it became quickly apparent to me
that they said, Victoria, for us to do the research,
we need to have blood specimens.
We need the material to do this research.
So I thought, wow, now I have to create a repository, a blood bank, and start collecting
blood from patients when I'm hearing it's so rare.
And when Allie was first diagnosed,
I was trying to just find one person that had this.
Now I have to amass an entire blood bank
of specimens around the world.
And that was seemingly, I thought, how do you start?
How do you do that?
How I did that.
How do you do that?
How do you do that?
I hired a nurse that I said,
I'm going to find where these patients are.
I'm going to send this nurse with a little cooler.
She would show up with a little cooler
and she'd go to Alaska or she'd go anywhere.
Literally taking samples and bringing them back.
That's how I started.
I now have over 100,000 specimens
in my own blood bank and bio repository that is used for drug companies. I mean, it's changed
the whole landscape. But if somebody would have told me, honestly, Jay, that I would
be like having to build a blood bank, that I'd be doing that. 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?
You get a blush if you give me your blood
because a lot, you know, are women.
But you get creative and you think about that.
And I knew that the biggest way
that I could make the difference
was getting all these people together in a room working in the same direction.
Wow. I mean, that, you know, it's so inspiring because it's so you've just had so many moments in your life that I think it would be natural and it would be completely okay to give up and
slow down and just accept.
And you also, I'm intrigued because when I've spent time with you and even today, it's not
like you're fighting.
It's almost like you're creating.
And I don't know, I'd love to hear your thoughts
on those two sentiments,
because often we think we have to fight to stay alive.
You started by saying you've always been a survivor.
Yeah.
What do you think's core to surviving difficult situations?
Is it fighting or is it creating opportunity or what is it?
I've never looked at it as, for example, put in the mix there the thought of like being a victim.
So if you think of being a victim, you think more of fighting.
So I don't think of myself as a victim or, you know,
I was never like, oh, why is this happening to me?
How did you not have that?
I mean, I wish there's a lot of times, clearly,
I wish that I had not gone through a rape
and gone through what I went through.
And there's times that I was like,
what would it have been like if I graduated high school
and I went to college and all of that?
But you know, that wasn't in the cards.
That wasn't my journey or, but I've always tried to,
I always try to zoom out
and look at, you know, why is this?
You know, what's the way in?
Where can I, I always want to do something good
and make the good come out of it.
That's just how I've always been, and I want to find that way.
And I genuinely always want to help in whatever it was, whether
it was teaching women makeup, which is now, which is, you know, when I'm sitting there at the
pharmaceutical company and showing them the path why they need to help all these people and how
they can. And again, going through their brain trust to get them, I mean, think about having to get
pharmaceutical companies. The fact that I got three drugs made, people say that never ever happens,
let alone in a rare disease world. How passionate you have to be about what you're talking about
and wanting to. So it's not really fighting for it. It's just helping people find it within themselves.
That's what I do.
I find that one piece, like what you do so beautifully, you find that thread,
that thing that binds all of us, that sense of shared sense of humanity and that purpose.
I had to find that purpose in the room for all those people.
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,
but what is that achieved, what has that stopped,
and then what are you still trying to figure out?
And I was able to get people that invented them
because going to obviously Genentech
and where they really, that's what they do.
But now what I learned, so I started to people always going, how are you doing this?
Like, this sounds crazy.
You're like making lip gloss and all of a sudden
you're getting these drugs made.
Like there's a lot in between those,
that little journey there.
And that's why I wrote The Power of Rare,
a blueprint for medical revolution,
which is really this is,
cause there's other moms, dads, families
that are going through stories like mine.
And I said, I'm gonna write down at least this is what I did
because people always wanna know how you did it.
I found the biggest magic was always bringing early on,
I brought people together.
I had, I brought together over gosh, 40 countries together and hundreds of researchers and scientists and patients together. I brought together over 40 countries together and hundreds of researchers and scientists
and patients together. So that's always been so critical in what I do. But what I'm doing now is
so people have said, well, how have you done it? Look at what you've done. Look at autoimmune disease in general. Autoimmune disease right now, which is what
you know Allie has and yes she's on a drug now that is more controlling things, but I decided
as I listened to you know our president which is great he talks about cancer and moon shots,
I thought I want to do a cure shot, a cure shot. We don't need to go to the moon to start curing disease here.
And autoimmune disease and cancer are opposite sides of the same coin.
And I thought people started going, have you looked at what you're doing in the world of autoimmune disease,
this particular one, using this as a blueprint for curing a lot of other autoimmune diseases.
So that's really what I'm passionate about now.
And I have to say I have an amazing team that supports me.
I couldn't have gone through this journey without Dr. Michael Yeaman, who's head of
molecular medicine at UCLA.
I mean, he's the scientist that, you know, we've gone everywhere from the Harvard's to the Mayo to we're doing work
with Verily at Google, looking at biomarkers.
I mean, he's always by my side
and probably one of the smartest people.
So I'm very fortunate that I've put together
a great team of people and they see how far we've come.
So 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 and it and that was the turning point. It was like, you're right, it's not.
And when I see now all the patients and the parents,
and I just feel if my voice can help give voice
to other people, this is what I'm doing.
And for our viewers and for our listeners, how is Allie?
Allie's doing really well.
She passed the bar, she went to law school.
She was her own champion.
I mean, I think early on, you know, she was like,
Mom, I don't want to know what I have.
Don't tell me, which was really, can you imagine,
in the early days of walking around,
thinking, oh my gosh, my daughter has four years,
doesn't even want to know.
But she goes, I know whatever it is, Mom.
You'll figure it out.
But Ali is really the one who has figured it out.
And she's doing really well, and she's a champion.
And you see how the toll it takes even on,
I have two other children, and one at the time
was a musician on the road,
opening for One Direction for years.
And he's out on the road opening for One Direction for years. And he's out on the road and I'm,
you know, going and going to these different institutions. And I should say because as people
are going through this and whatever your journey is, even while I was going through this and this
was Allie's, there was at one point that I myself became diagnosed with cancer and I had to really
sort of go, this can't be again that visualization.
I was like, this isn't going to be the movie or like the mom's trying to save the daughter
but then she gets cancer and she dies or Lorenzozo's oil, which people told me about,
where he dies, it was like, no,
I'm going to whatever the odds are,
whatever things happen, there's another way to look at it
and another way to persevere and get through it.
What have you learned about,
so like let's say there are people in the audience
who are listening or watching today,
they know someone who's struggling
with an autoimmune disease or someone in their life,
or maybe even if they are,
I have people in my family and life,
where do they start?
What do they do?
Where do they get help?
Like, what are the best places that you've seen
or places of support,
especially if people aren't in a, you know,
financial, don't have financial capacity to help solve some of those things?
Well, first and foremost, they have to start within.
They have to find their voice and not be a victim of it, but go, what can I do?
In my situation, when I created an app, NMO resources,
and I started to put together,
building an actual community for patients
to have support groups.
So look for other people that are going through
what you're going through and start going through that,
having people that you surround yourself in life.
Try to put together a team, even at whatever level,
and I know people will look at, and I've
heard people like Victoria, we don't have the money you have and all of that. No, but you have
a voice and you know if something you're hearing doesn't feel right, getting those second opinions,
advocate for yourself. That's a really, really big part of it. And a big part of what I do
when I'm doing my patient days where I bring together hundreds of patients together.
I'm advocating for them,
but I'm getting them ultimately to advocate for themselves
because that's what they need to do.
And seek out, just do the research, go online,
look at the different things that, you know,
and sort of vet them for yourself and see what feels right. It's all about taking
action. I'm working on another book right now that'll come out next year, but it's called
Warrior to Warrior. I always say worry weighs more when you carry it alone. So you gotta 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.
Victoria, you've been so vulnerable
and generous and kind today with sharing your journey,
sharing challenging moments.
And today I just want everyone who's listening
and watching to know we have only skimmed the iceberg
of the amount of work, the depth, the story.
And so I highly recommend that both of these books
Saving Each Other and The Power of Rare,
if you're truly fascinated by the depths of this story
and journey that you dive into those two books,
because like I said, we've only touched the tip
of the iceberg, 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.
And I always ruin it by asking for more details.
So that's up to me.
But Victoria, I'd like to ask you your final five.
The first question is, what is the best advice
you've ever heard or received?
I'd say my mom early on said, wash your face,
put on some makeup and just go out there and do it.
I like that, that makes sense.
That's the makeup alliance.
And then I started a cosmetic company. That makes sense, that makes sense. What you the makeup alliance. And then I started a cosmetic company.
That makes sense. That makes sense.
What you tell your kids every day.
That's great.
Second question.
What is the worst advice you've ever heard or received?
You'll never be able to do that.
You're aiming too high.
So true.
Question number three.
How would you define your current purpose?
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.
That's really my purpose.
Question number four.
You used this phrase a few times in the interview,
like finding your voice, you have to have a voice.
What is the best way for someone to find their voice
when they feel they've had to be quiet, silence, or they never had one in the first place?
Well, I don't believe nobody's not had a voice in the first place. We all have that. For me,
I always encourage people to just get quiet with yourself, which is different than becoming quiet.
But getting quiet with yourself, kind of a lot of times
I use that visualization of just zooming out
and hearing myself say it in my mind
and then letting the words come out,
just like they did when I made my scream and I was afraid.
So, and those words came out is be willing to do it.
Just do it, you know?
I'm just, that's so important to me.
Just get quiet, center yourself, think about it,
and then just say it, move it, move through it, just do it.
Mm-hmm, beautiful.
And fifth and final question,
if you could create one law
that everyone in the world had to follow,
what would it be?
If we could all just get back to our shared sense of humanity,
you know, that really, more than not,
people are good people. I have seen, and that is one thing,
Jay, I'll tell you, working with 40 different countries and all the different researchers
and scientists from around the world, when they walk in the doors of my conferences,
everybody there is there to really help people. All the politics, all the other stuff,
we're there to help people.
And just that, if we could just get back
to that shared sense of humanity and loving one another,
there'd be nothing better than that.
Thank you.
Victoria, is there anything that I haven't asked you today
that you deeply wanna share or something on your heart
or your mind or your soul that you feel
whole to share.
I don't know, what do you think?
People hearing this, will they benefit from it?
Absolutely, absolutely.
I mean, you're hearing it for the first time.
It's so, I mean, I meant everything I said.
It's so honestly moving to hear a journey of someone, just
a real human story of someone who achieved material success after so much personal tribulation
and trauma to then switch to a service-based life,
and now dedicated even further, of course,
through helping Ali,
but now to helping autoimmune diseases as a whole.
Yeah.
I mean, I don't know if there's a better story arc
for a movie.
You know, it's like, you know, I don't know if,
it's almost like you couldn't write it.
Because it's so powerful that someone would be able to rise from those situations.
Even, you know, third marriage you said, like...
Yeah, to Bill.
Yeah, of course. Yeah, yeah, yeah.
But I mean, like, to go through that after what you've been through,
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, to then have the worst news you could potentially ask for.
And, you know, I think it's going to move and help a lot of people.
I wouldn't have, I mean, I don't know many people
who've lived that life, so.
Yeah, well, you know what, I mean, honestly,
just the fact that you've given me the opportunity
because 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.
Getting press early on was like, forget it.
I mean, it's like, it's not sexy.
It's not, you know, people are talking about whatever.
It's always something that, and to me, it's like,
this is a great story for how things can actually happen.
When you really do see how these doctors
and patients and people work together
and what's been built, it really is extraordinary.
I mean, it's been 15 years now.
And just even, you know, just
going through the Hall of Fame, you know, which was amazing just to have that experience of having Gloria Steinem induct me into the Hall of Fame or the Pope, which will get you there,
was all extraordinary. 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.
How much have you invested now in this journey?
How much have you personally invested into this?
I've put in $80 million of my own money.
Yeah, that's incredible.
Yeah.
And that's important too.
And that $80 million is really, you know, you look at that,
it's hundreds of millions that a pharmaceutical company
had to put in and I had to show them and build a model
to show them how they can make money.
You know, and I could have just, you know, become angry
or like, why do I have to do that?
They can just do that.
But you have to kind of, I sit in everybody's seat always in my mind,
in the room and go,
how do I get everyone aligned
so that we can all keep moving forward?
And that was really, really important
is to look at what everybody's needs were in that room,
what different countries, different institutions.
But then saying to the Mayo Clinic,
like unless you work with Oxford or whoever that is,
I'm not writing this check.
So everybody had to work with another institution
in all the research.
I think that's the most beautiful thing
that you're just using the success you had in service.
I mean, what better use of success is there
than in service to others?
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.
Like I'm hearing about it all the time.
That's what this will really help Jay too, is that because so many people are
misdiagnosed with different things, most of the patients that now have what Ali
has, they've been misdiagnosed before the doctors even knew what it was.
They were misdiagnosed with MS or So that's why there's so many more patients
than originally they thought.
And I created, there's an assay that
it's literally a blood test that tells you
if you have it, so...
How accessible is that for everyone?
Anybody can get it.
Anybody can get it.
I mean, in this case, the doctor marked,
checked that box, you know, for that test.
But yeah, but that's why I created the app and things
because when you go to an emergency room,
a lot of people, they wouldn't even know
about this condition.
So, and then when you're not getting treated,
you're just having more and more damage.
And how does the app work?
Anyone can use it from home?
The app, yeah, it's on your phone.
Yeah.
It's just on your phone.
Did you tell us what exactly the apps are there?
The app is called NMO Resources.
And you literally download it, and it's got everything.
I mean, it's extraordinary to see there isn't something like this that exists.
And it's totally free.
It's got everything from the clinical trials that are going on to support groups.
Anywhere in the world where you are you can find a physician it talks
about what a relapse looks like I mean if you're having an attack you go into
an emergency room you show them the app everything is right there I mean it's
it's really extraordinary I wanted something that people would have in real
time if you had this for all conditions I mean people creating something like
this it's. Are you
trying to do that for other autoimmune diseases as well now? What I'm
doing now especially in the one with with Allie's case is a lot of times in
different conditions you don't know if you're having a relapse. So I'm working
with Verily which is part of Google in helping find all the biomarkers.
And also I've created something called a relapse navigator,
which doctors will be using that is really kind of a shelf
where you can put in the different symptoms and things
that you'll be able to patients and doctors can know
if they're having attacks.
So thinking about technology now
with where we're gonna be with AI and all of these things.
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 Animo-Devix disease.
And now there's thousands that have been published
since I've been doing this work, literally thousands.
And it's been 15 years that you've been dedicated
to this now. 15 years, yeah.
15 years I've been doing this.
15 years I've waited to talk to you or to talk in general just to get the message out
there because it's really, really tough.
I know there's a lot of people in the world that are suffering with these kind of conditions
and diseases and there's probably a lot of parents that are trying to figure it out and figure out how to 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.
When you treat one, you get the other.
So it's, you're much more vulnerable to that.
And what's that gap?
Like what is, because you always feel, I guess, we assume that so much money is going
towards solving cancer and solving this.
Like if, is money the issue?
Is time the issue?
Is collaboration the issue?
Like what's the...
I think what makes me the craziest
is when people give a lot of money,
say they're very well intentioned,
they're giving money to something,
but it's going to maybe to pay for a chair for a professor
or it's not going where it needs to go.
100%, we're pretty much,
I've put in $80 million of my own money, of our family money,
every penny goes to research and science. A lot of places it just doesn't. Or it's not put to,
like everything I do is tranched. I have to see results. Everything has to be translational,
meaning bench to bedside. If you don't see that it's going to be really
on the critical path to make a difference, I don't fund it. So a lot of money is spent on things that
scientists and God bless them, but they'll research the head of a pin forever. I mean,
you have to sort of be very strategic and you have to go, okay, where is the gold in this that I'm gonna fund it
because it's really gonna make a difference.
And why is it important for the people to make a noise?
Because like you said, like they can't help solve it.
They can't, they necessarily,
the solutions don't exist right now if someone's struggling.
What's your take for the prevention,
but also like the living with for someone who, you know, what is that?
Obviously some of that for NMO is in the app.
But if it's autoimmune diseases in general.
Oh, yeah. I mean, I think that basically, well, I would tell anybody that has an autoimmune disease,
look at this and look at the things that we recommend.
I mean, obviously you've gotta be speaking
to your own doctors and following your own medical advice
because I'm not a doctor, I'm like doctor mom.
But I would say that there's a lot more research out there
and people that are making huge advances
that a lot of people don't even know about.
So you have to really advocate and do the research and do the deep dive. Don't just
go with what the one doctor may say to you. There's a lot of people working in
these areas that you may know nothing about and look at it on the broad
spectrum of like set it on the world stage. Look at it globally. See what
they're doing in different countries, you
know, really educate yourself.
That's what I had to do.
I mean, I had to really learn it and study it and understand it.
So you just can't be a victim of it.
And I know that's a lot easier said than done, especially when you're in pain and you're
struggling and you don't have money.
But you got to find a way. You just got to have money. But you gotta find a way.
You just gotta find a way.
I always find a way.
Yeah, thank you, Victoria.
Thank you.
Thank you so much.
Thank you.
I mean, I was most, the whole time.
Yeah, exactly.
Aw, thank you.
I think it's one of the, you know,
it's personal story to me is the best way
to help inspire and liven others.
And I think everything you shared today will touch people's hearts and move them into actions. to me is the best way to help inspire and life and others.
And I think everything you shared today will touch people's hearts and move them into actions.
Thank you.
Well, thank you.
Listen, you gave me this opportunity.
I'm grateful to call you a friend.
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. So thank you.
Yeah. When we do a lot of, you know, I do a lot of research and work in India as well,
like worldwide. So, you know, it's just so many people that they just don't have the access that
they don't know or they are too afraid to, you know, so anything that you can do, I mean, you're the best.
I'm here to help.
I believe in it.
I agree with you.
I don't know if there's any bigger thing to solve
than healthcare.
Like 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 end.
Yeah.
And I think that's why if people go,
well, gosh, if she did it and like no experience,
you know, like the way I started and found my way into it.
But when you actually, that's when I,
honestly, when people started saying to me,
you know, this is actually gonna change MS,
or this is actually gonna to change lupus
and rheumatoid arthritis.
And I was like, really?
Like then I just thought this is the work, this is my life's work, you know.
Thank you, Victoria.
Thank you to everyone who's been listening and watching back at home.
Please make sure that you share this with friends you know would be inspired by it, moved by it.
And please let me know what really resonated with you and stood out for you.
A big thank you to Victoria again.
Thank you.
And thank you so much for your friendship and your service, Victoria.
It means the world. Thank you so much.
Thank you.
Thank you.
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