My origin story started in the Flint Hills of Kansas. I grew up on
a cattle ranch at a rural area and just a real lovely way to grow
up. Incredibly proud of where I'm from and the way I grew up.
I think when you grow up in a small town, when you grow up
on a ranch and a farm, teaches you a few things. But number
one the strength and community, right, You really got to rely on your
neighbor. You need your neighbor to accomplish the things that you set out to
accomplish. Number Two, you know, there's just a work ethic of hard
work, right. You get up when the sun comes up and you stop
working when the sun goes down. And that was just a great lesson to
learn as a youngster, right, Just that not only that the hard work
and the time it takes to do that, but being proud of your work,
right, having something to show for your work, and being able to
help those around you. And then number three, there's something about the humility
of the Midwest and growing up in an environment like that, in a community
where you never get too big for your bridges, so to speak, right,
and people around and you helped remind you of that. So it was
a really lovely way to grow up. What brought me to the East Coast
and really helped me launch this career that I've chosen is you know, my
grandfather was not from the Midwest on my mom's side. He was from the
East Coast in New York, and you know, became a very successful entrepreneur.
And as a child, I was always just very curious and that led
me to be entrepreneurial in many different ways, whether it was a farm stand
or starting a business. Was always just curious about the world around me and
really rooted in solving problems. I think led to that curiosity. So I
always would ask my grandfather, you know, tell me about life, tell
me about business, tell me everything you know, going back as far as
I can remember, and there was a story that he always would come back
to, and he said, I can do that. But what I think
life is about is what this guy named Paul Newman has done. And you
know some of us remember Paul Newman, but legendary actor, a race car
driver, entrepreneur, and philanthropist. And my grandfather had the opportunity to work
with him at one point in his career and he said, here's a guy
that achieved this massive success in many different areas in his life, but what
he's decided to do with that platform is to turn around and give it back
to other people. And he told me about a camp that Paul had started
in the woods of Connecticut called the Hole in the Wall Gang Camp, named
after, of course, the famous movie Butch Cassidy and the Sundance Kid.
And the concept was at its core, relatively simple. Kids that battle serious
illness like cancer, sickle cell HIV life threatening illness oftentimes are robbed of the
chance to be a child and experience things that normal children get to do.
So let's create this camp that's medically safe, where kids on active chemo can
ride horses and climb rock walls, and kids with sickle cell can swim in
swimming pools, and you know, really this inclusive environment where you wouldn't even
know it was a medical facility when you walked around it, but it was
a safe place for children. So as soon as I learned that I could
volunteer at eighteen years old, I got in my beat up truck from Kansas
and I drove across the country to con Etiquette and that was really a life
changing moment, I guess you could say was my origin story. Had the
opportunity to work with fourteen and fifteen year old young people that were born with
HIV AIDS, and they came from places that I wasn't that familiar with,
you know, cities like Boston and New York and Washington, d C.
And it was a real reset for me in my life as an eighteen year
old to learn that the world a is so much bigger than you and b
you know, these were young people that didn't choose this hand that they were
dealt. They were born with these diseases. They were born with this illness.
And I realized, if I'm in a position to use my time and
talents in my life to be able to help these young people that battle disease,
then I how to do that. So that really inspired me for a
career in the space. And I got to work with Paul for almost ten
years in his organization and met amazing families, got to work in hospitals throughout
the Northeast, and really launched a career under the simple principle that you know,
if you want to meet some of the most resist brave, courageous people
you've ever met, meet young people battling disease, and they can teach you
a lot about courage and bravery in your own life. Well that's well,
Sad, thanks for sharing all that. And it always amazes me Michael in
the series that a book, a person, an event can change your life
so drastically. It's something you never plan on doing and now you're doing it
knocking out of the park. So we're here to talk about EBE Research partnership.
A lot before we do that, I want to give a little context
to our listeners about all the things that you did before that. I know
you talked about the few things that you were doing, and I also want
to talk about the idea of actually coming up with a company, because I
think that's fascinating to myself and all our listeners as well, in that epiphany
about Hey, I think there's a whole in the industry and I think I
can do something pretty special here. But what did you do before you started
eb Research? Yeah, so my first job was working for Paul Newman at
the whole New Wogang camp and I started just helping families get to the camp.
It's a free resource, so going to sit in hospitals, meeting with
social workers, doctors, nurses, parents. You know, you'd imagine if
you have a child that's in the hospital majority of the year, saying we're
going to send them to a camp by themselves for a week, I can
seem pretty daunting. So it was certainly a fast lesson right and how to
work with these communities and work in the healthcare ecosystem right and the organization was
will always have a giant place in my heart. But you know, part
of the job was, you know, unfortunately you have to experience the loss
of life of young people to disease. You know, you can't win the
fight and battle every single time. And as a young person, I saw
the ripple effect that that had on families, on communities, on the healthcare
workers that were part of these families journeys in their life. And going back
to that, you know, entrepreneurial instinct wanted to do something about solving that
problem. You know, how can we solve the problem at disease at its
core? The camp is an amazing resource, provides community for these young people
and families, but how can we stop disease itself and its tracks? And
after being with the whole in the Wall gang. For about ten years,
I met a woman named Kathy Juicy And this goes to your point, Dennis,
about you know, people or moments that may change the course of your
trajectory. And she had an organization called the Multiple Maloma Research Foundation, and
their big goal was to you know, find treatments and a cure for multiple
maloma, which is a rare blood cancer. And Kathy was unique because she
was a patient, but she wasn't just any patient. She had a degree
from Harvard Business School. She worked in the pharmaceutical industry, and she received
a diagnosis of cancer that her grandfather had, you know, decades before,
yet nothing had changed in the landscape. So she had this thesis and this
hypothesis and this principle that look, if we want to accomplish big things like
carrying disease, we got to run this like a fortune fifty company. You
know, whether you're a nonprofit medical research hospital, academic medical center, you
need a good business model, right. And so Kathy became a mentor.
I went to work for her, and she really inspired me to go get
a degree in business, right, not a nonprofit or master's in health,
because she said look, you know, business people are going to be the
ones that can change the world in medical research. So I did that,
you know, I went and got a business degree, and the whole time
I thought about a simple question, how can we make and accelerate treatments and
cures for rare diseases? Right? And part of the answer was, you
know, it's a big complex ecosystem in healthcare, right, So how do
we get everybody at the same table. How do we align the interest and
incentives of the patient community, their families, the doctors and researchers that work
on the disease, the biotech and pharma companies that take these therapeutics to market,
government that you know sits and gives the ultimate say and approval. So
did a lot of thinking about this, a lot of writing about this,
and started coming up with ideas of something that we call venture philanthropy, right,
And what is venture philanthropy. It's this concept that as a foundation,
you don't just write checks and hope for the best. You take your donor
dollars and your funds raised and you invest them like a venture capitalist was you
fund research with the ability to app upside if that's ever commercial utilized or successful,
the return on investment becomes return on impact because those dollars go back to
the foundation to continue to fund more research until we have treatments and cures.
So there was a lot of thinking about that and thinking about those concepts,
and that's how I was introduced to EB Research Partnership. All right, and
I've got my math as almost six years doing this. Is that correct?
You're exactly correct, Dennis. All right. I checked out my LinkedIn and
I got that correct on the mask. So well, listen, we are
here to talk about EB Research Partnership, and thanks for the introduction Michael and
the company. And I'd like to just first ask you and get our listeners
acquainted and educated about what the mission statement is of EB Research. Yeah.
Well, you imagine, you know, being a parent, and you've never
heard the words epidermal lisis belosa before. You imagine being a parent. You've
never heard the words epidermal lisis blosa before, and the first time you hear
it is when you walk into a hospital. You know, for many of
us, the happiest day of our lives delivering a baby, bringing a child
into the world, and then you're out is wisk away to the Nickey emergency
room and they said, your child has this thing called epidermallysis belosa, and
we call it EB. For sure, it's not so easy to pronounce,
but part of our mission is to cure this so you never have to pronounce
it again. So our big, bold, audacious goal at EBRP is to
cure EB by the end of this decade and pioneer a new innovative business model
that can apply to the four hundred million people on this planet with a rare
disease. So how did EB Research Partnership start? A group of those parents,
They looked around at the research landscape. There wasn't a lot of clinical
trials, there wasn't a lot of research, There wasn't a lot of activity
in the space. And they took it upon them to change that right,
and you know, they had some help along the way. We were really
lucky to have. You know, a group of those co founders be Jie
and Eddie Vedder of the band Pearl Jam and Jill's childhood friend had a son
with the disease and so she wanted to really use their platform and their power
to change this existence. And I've been in pediatric disease for twenty years.
And you know, it's hard to compare, but it's particularly one of the
more devastating disease I've worked with. Skin is the largest organ in the body,
and for those born with EB the skin just simply doesn't work right and
it causes full body bandaging. Things that you and I take for granted,
Drinking a glass of water, getting a good night's sleep, walking, talking,
like monumental daily tasks. Right, And so that's the bad news.
The good news is eb's and monogenic disease, which means it's caused by one
genetic mutation that we know. So that gives us hope, courage, optimism
to charge forward with endless urgency to reach that target of a cure by twenty
thirty. And you know, the rising tide lifts all ships. So we
believe we have a model of business that's working. You know, venture philanthropy,
venture capital, impact, investing, new technology models, not just funding
research, but funding companies, not just funding companies but starting companies. It's
a new way to look at the world. And we've seen impact when we
started two clinical trials today more than forty when we started no treatments and as
we had the first very big milestone approved treatment, a FDA approved treatment for
EB and May of this year, and it's a topical gene therapy, the
first ever topical gene therapy that's not a cure, but it gives us hope
and promise and optimism. And I talked to a mom of a young person
with EB and she said it best. She said, Look, this just
means that we'll have more kids to cure. And I think that embodies that
this is a big step in our trajectory, but it's not the endgame,
and it gives us more hope and motivation to push towards that finish line when
not only can we deliver a cure for this disease, but hopefully along the
way, lift up many other organizations that pursue treatments and cures for their rare
disease. Well, Michael, it's pretty extraordinary in the short amount of time
that you've had with all the researchers and the doctors and the families and everybody
about moving so quickly, and things are moving quickly. You know, something
struck me too in our conversation. I know that you know, I talked
to a lot of nonprofits out there, and a lot of agencies, a
lot of people that do with you do trying to hopefully cure a disease.
We manage you, whether it's children, young adults, or adults. It's
just amazing how many people like you were out there. We're so thankful that
there are angels like you and your staff out there that do what you do.
But with that said, you know, it struck me when you worked
with the Paul Newman Foundation and then you got introduced to Eddie that when these
celebrities are these we well known famous people have a platform that are going through
something that you and I would be going through, but we don't have that
platform, it must really help you in an extraordinary way. That's, you
know, because it's just hard when you run an organization, but to have
somebody that has a pulpit social media and a voice, and Eddie of course
is legendary on talking about what's exactly in his mind. I think it's extraordinary
that you have this kind of partnership and I'm sure you take advantage of it
in all the good ways. Well, Dennis, you hit on a really
key theme there and a key parallel and I feel fortunate in my career to
work with folks like that. And there's some similarities, right. You look
at Paul Newman and Joanne Woodward as a couple, right with our couple,
Yeah, our couple, and you look at Jill Vedda and Eddie Better as
a power couple. And what they share is that you know, they have
the platform, as you said, and I don't think as a matter of
fact, I know we wouldn't be where we are on the trajectory of treatments
and looking at cures for this disease if it wasn't for Jill and Eddie.
But what they share is not only did they be generous enough to share their
platform, but both of those groups of power couples were never afraid to roll
up their sleeves. You know, Paul had a cabin on the camp.
He was there, he was active, he participated, he was part of
the leadership, part of the board. Jill and Eddie they are here.
They are active, they are leaders on the board, they are co founders.
They're not just a voice that lends their platform to this. They're actively
engaged. You ask either about the state of research and the strategy of the
company, they'll be able to say right away where we're going, where we're
headed and why. So really fortunate to combine, you know, individuals with
the platform, but individuals that do the hard work right and roll up their
sleeves and are on the front lines with the rest of the team that's chosen
to pursue that ambitious goal. And Michael, I like to talk to our
leaders and our CEOs and founders about the tough stuff too, And we always
say that as much as work is being done, we're moving closer to cures
and whatever you're trying to solve, your solving. But the world doesn't always
unicorns and rainbows all the time when it comes to your industry. What kind
of challenges are you facing right now? Yeah, lots of challenges and healthcare,
I think the central challenge for our work, and I think many that
are in medical research or medicine and health is time. Time is the greatest
asset we have, right and it's the one thing that we can't control or
get back. It rolls along right and when you have a child or you
are an individual that's battling a life threatening, rare disease, time is a
gift that you never forget about. Ever, Right, the calock is ticking,
and we hold that every day right as the urgency that we carry to
our jobs. You know, every minute that a child's in pain that we
can prevent and take away is something that motivates and feels us every single day.
If we can give you years back with your love, if we can
give you years without pain, if we can restore years of being a child
and being able to enjoy the things that a child should without pain and suffering,
that's the gift that we want to give back. That's the asset,
that's the value that we can deliver as an organization. And so for us,
you know, the challenge is things never move fast enough. But the
opportunity is to make things move faster than they are today. Right, So
we look at things like data and technology being a lever for change and driving
decisions that can inform speed and research and development. We look at things like
collaborations and incentivizing academic medical centers and biotech companies to work together because we know
via collaboration and healthcare it can shave years off of delivering therapeutics to people that
really deserve it. Right, And we look at new business models challenging ourselves,
not being comfortable with the status quo. You know, things have been
done this way for a long time. We should do it. No,
let's shake the boat. Let's try venture capital, let's try impact investing right,
Let's try new ways of investing. Let's let's start our own companies right
and see how that goes. So I think having the courage to do the
different thing, and as a way to give that biggest asset back as much
as we can, time becomes the challenge, but also the opportunity. I'll
tell you a quick story, Dennis, to tie you know where I'm from
and what we do. There's something that we say in the Midwest, and
we say, do you know the difference between a buffalo and a cow and
a thunderstorm? And many don't. But the difference is when a thunderstorm comes
across the plains of Kansas, cows run the opposite direction. They do the
status quo. That's what they've always done. Is a herd. So they
follow the herd and they think they can outrun it. But what happens is
that thunderstorm never goes away. It follows you and follows you around. Where
buffalo do the exact opposite. They turn and they run right towards the dang
thing. Right. It's going to be messy, it's going to be obstacles,
it's going to be painful, there's going to be challenges. But by
doing that, you know, they run through it and they get to the
other side. And I think that's the way that we view big, bold,
audacious goals like carrying a disease. Right, Let's do the hard thing.
Let's get through those obstacles, let's learn along the way. But our
hope and our ambition and motivation is to get on the other side, which
is relieving the pain and suffering that these families go through every minute of every
day. Great saying and great analogy. I appreciate you sharing that on your
gorgeous website that you have that we'll give at the end of this interview.
But a lot of are very intelligent listeners have already found your website, so
they're probably on there right now and it's easy to navigate. But there are
a couple different parts of the nab Bar that I want to hit on with
research and get involved. We'll do get involved in just a second, because
that's a real big deal here. But when it comes to research and the
impact, and of course the advisory board, the trials, the council,
and even applying for a GRAM. I'm curious because you're running a company here
and there's a lot of tentacles that you've already described by what you do.
How do you get to hear what's going on with families and making a difference.
Yeah, Well, you know, when you have big goals like carrying
disease and you run an organization of this size, which has just exponentially grown
so much, particularly in the last few years, it's all about teams,
right, and so the teams that we bring to the table that guide us.
You start with the patient. That's our true north right. So we
have patients on our board, the directors, we have patient advisory boards.
Every decision that we make, we'd want to know how it impacts the patients,
what a patients think, how do they feel? So having them as
the north star, the true guide of what we do is important in every
aspect of our operation. Number Two, that scientific advisory board that you mentioned,
you know, bringing together the most brilliant scientists not only for eb not
only for dermatology, but across multiple different sectors and industry as well. They
can vet the science, right, they can help us understand not only we're
the best investments with the highest impact that serve the patients, but are they
synergistic with things that we're already doing. Do they complement things that we're already
doing. Can they put speed into things that we've already funded. Will this
thing that we fund today be increased because of what we funded previously. Then
the third is really that medical community, right, getting researchers together, whether
they've worked an eb before or we're trying to draw them into our field,
to understand that, hey, we've got funding available, we've got resources available,
we've got a motivated group of pats, we've got a data set as
a starting point that can provide you information to put speed into your understanding of
this disease and your discovery and this disease. So you know, but having
those three groups alone doesn't do you much good. So finding opportunities to bring
those groups together where everybody can hear the unique person's perspective, and sometimes that's
literally sitting in a room with everybody at the table, so everybody can be
informed of the ones needs and desires of the other stakeholders in the community,
and sometimes that's just informing everybody along every step of the process. Patients,
what do you think about this research that we're going to fund, researchers,
what do you think about what our patients are asking for biotech and pharma,
what do you think about what we're hearing from the academic medical center, community
and patients as well, and just really having strong communication And at the end
of that, if we can align incentives of all those groups, everybody wants
the same thing. We all want treatments, we all eventually want a cure.
So that's a big part of how we run our operation as inclusion of
those diverse array of opinions and thoughts and and desires. Michael, it's really
clear than in the six years you've been very sustainable. What about growth?
I know you're always looking to the future. What's the future look like.
Well, the future looks like first and foremost, more treatments for this disease,
for every subtype of this disease. The future beyond that looks like a
cure. You know, we are funding research now that by medical definition is
definitive and curative, which you know, we can all talk about it,
right. But when the academics and doctors and researchers start using words like definitive
and curative, that motivates us, that fires us up, That gives us
an endgame to run to. So and beyond that, what we've realized is
the model that we have is exemplary and pioneering for rare disease. Right forty
clinical trials. If you think about four hundred million people with a rare disease,
almost ten percent of the planet is affected by a rare disease, yet
ninety five percent don't have a single FDA approved treatment. So we've been able
to cross over into that five percent threshold. We want to take what we've
learned and help other rare disease organizations, help other families that battle this.
Right, you learn more from your mistakes, and we've made plenty of them,
but along the way, that's given us a roadmap, a blueprint for
a ture, if you will, and we want to make sure that that
can benefit others working in this space. Michael, I want to leave a
couple last words for you and give you the platform. And we've been educated
and we're once again we're going to be at a website to everybody and how
you can get involved. But that really is the big thing about getting involved.
And there's a lot of different things on the website you can go through,
but if you could just maybe hand on some of the bullet points about
getting involved in what people that are listening to this interview today, what can
they do well? First of all, ww dot eb research dot org.
You can learn all about our mission. We always have the highest standards for
transparency. You can read all our financials, you can see where every penny
goes. You can learn about our teams, you can learn about our mission
and our vision. You know what you're doing here. Dennis is letting us
share our mission on a platform to all the listeners that you have, anybody
that's willing to share the story and talk to folks about it. It's the
biggest help. Whether you you know, tell ten friends or you go on
a giant podcast where millions of people can hear it is a massive help.
Right. And number three, I think really trying to figure out you know,
we like to say we want to put the fund in fundraising and philanthropy.
Right, what do you like to do? Do you like music?
Great? We do concerts. Do you like sports? Great, we do
sporting events. Do you like to do events or golf or you know,
wine tastings or you know something more low key, whatever it is, there's
a place for everybody to figure out a way to engage their communities and continue
to spread the mission. Michael, if you want to leave, maybe just
one takeaway. And I know it's stopped, but if there was one takeaway
you want to listen to go away with when it comes to EB Research Partnership,
what would that be? Well, I think about and I'm going to
paraphrase this, but Muhammad Ali said something to the effect of services, the
rent that we pay for our time here on Earth. And you know I've
been rewarded in my life and I know you as well, Dennis, because
we've chatted about this, to live a life of purpose, you know,
feeling that my life is in service to others, that my hours, my
talents, my skills could be used to benefit somebody on this planet that really
deserves to benefit from any skills or resources any of us have. So one
big takeaway, whether you get involved with EVRP or another organization, I would
challenge anybody that's listening figure out what your gift to this world is, what
your skill is, what your purpose, and figure out a way that you
can give that to others, because there's certainly no greater reward. Well said,
and I agree, let's give that website one more time. Michael,
ww dot ebresearch dot org. Well, listen, man, in the short
time we got to know each other, I can't tell you how much I
appreciate your valuable time. But you're making a difference out there, and that's
all you can ask when we get up, try and make a difference out
there. So you and your team are doing that with the researchers, the
doctors and helping out families and children. Michael, it's absolutely extraordinary to talk
to you. Listen, continue success and we really appreciate you joining us on
CEOs. You should know. Thank you so much. Dennis