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My origin story started in the Flint
Hills of Kansas. I grew up on

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a cattle ranch at a rural area
and just a real lovely way to grow

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up. Incredibly proud of where I'm
from and the way I grew up.

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I think when you grow up in
a small town, when you grow up

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on a ranch and a farm,
teaches you a few things. But number

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one the strength and community, right, You really got to rely on your

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neighbor. You need your neighbor to
accomplish the things that you set out to

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accomplish. Number Two, you know, there's just a work ethic of hard

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work, right. You get up
when the sun comes up and you stop

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working when the sun goes down.
And that was just a great lesson to

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learn as a youngster, right,
Just that not only that the hard work

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and the time it takes to do
that, but being proud of your work,

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right, having something to show for
your work, and being able to

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help those around you. And then
number three, there's something about the humility

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of the Midwest and growing up in
an environment like that, in a community

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where you never get too big for
your bridges, so to speak, right,

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and people around and you helped remind
you of that. So it was

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a really lovely way to grow up. What brought me to the East Coast

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and really helped me launch this career
that I've chosen is you know, my

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grandfather was not from the Midwest on
my mom's side. He was from the

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East Coast in New York, and
you know, became a very successful entrepreneur.

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And as a child, I was
always just very curious and that led

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me to be entrepreneurial in many different
ways, whether it was a farm stand

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or starting a business. Was always
just curious about the world around me and

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really rooted in solving problems. I
think led to that curiosity. So I

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always would ask my grandfather, you
know, tell me about life, tell

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me about business, tell me everything
you know, going back as far as

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I can remember, and there was
a story that he always would come back

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to, and he said, I
can do that. But what I think

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life is about is what this guy
named Paul Newman has done. And you

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know some of us remember Paul Newman, but legendary actor, a race car

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driver, entrepreneur, and philanthropist.
And my grandfather had the opportunity to work

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with him at one point in his
career and he said, here's a guy

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that achieved this massive success in many
different areas in his life, but what

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he's decided to do with that platform
is to turn around and give it back

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to other people. And he told
me about a camp that Paul had started

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in the woods of Connecticut called the
Hole in the Wall Gang Camp, named

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after, of course, the famous
movie Butch Cassidy and the Sundance Kid.

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And the concept was at its core, relatively simple. Kids that battle serious

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illness like cancer, sickle cell HIV
life threatening illness oftentimes are robbed of the

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chance to be a child and experience
things that normal children get to do.

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So let's create this camp that's medically
safe, where kids on active chemo can

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ride horses and climb rock walls,
and kids with sickle cell can swim in

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swimming pools, and you know,
really this inclusive environment where you wouldn't even

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know it was a medical facility when
you walked around it, but it was

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a safe place for children. So
as soon as I learned that I could

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volunteer at eighteen years old, I
got in my beat up truck from Kansas

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and I drove across the country to
con Etiquette and that was really a life

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changing moment, I guess you could
say was my origin story. Had the

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opportunity to work with fourteen and fifteen
year old young people that were born with

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HIV AIDS, and they came from
places that I wasn't that familiar with,

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you know, cities like Boston and
New York and Washington, d C.

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And it was a real reset for
me in my life as an eighteen year

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old to learn that the world a
is so much bigger than you and b

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you know, these were young people
that didn't choose this hand that they were

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dealt. They were born with these
diseases. They were born with this illness.

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And I realized, if I'm in
a position to use my time and

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talents in my life to be able
to help these young people that battle disease,

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then I how to do that.
So that really inspired me for a

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career in the space. And I
got to work with Paul for almost ten

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years in his organization and met amazing
families, got to work in hospitals throughout

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the Northeast, and really launched a
career under the simple principle that you know,

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if you want to meet some of
the most resist brave, courageous people

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you've ever met, meet young people
battling disease, and they can teach you

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a lot about courage and bravery in
your own life. Well that's well,

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Sad, thanks for sharing all that. And it always amazes me Michael in

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the series that a book, a
person, an event can change your life

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so drastically. It's something you never
plan on doing and now you're doing it

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knocking out of the park. So
we're here to talk about EBE Research partnership.

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A lot before we do that,
I want to give a little context

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to our listeners about all the things
that you did before that. I know

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you talked about the few things that
you were doing, and I also want

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to talk about the idea of actually
coming up with a company, because I

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think that's fascinating to myself and all
our listeners as well, in that epiphany

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about Hey, I think there's a
whole in the industry and I think I

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can do something pretty special here.
But what did you do before you started

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eb Research? Yeah, so my
first job was working for Paul Newman at

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the whole New Wogang camp and I
started just helping families get to the camp.

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It's a free resource, so going
to sit in hospitals, meeting with

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social workers, doctors, nurses,
parents. You know, you'd imagine if

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you have a child that's in the
hospital majority of the year, saying we're

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going to send them to a camp
by themselves for a week, I can

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seem pretty daunting. So it was
certainly a fast lesson right and how to

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work with these communities and work in
the healthcare ecosystem right and the organization was

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will always have a giant place in
my heart. But you know, part

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of the job was, you know, unfortunately you have to experience the loss

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of life of young people to disease. You know, you can't win the

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fight and battle every single time.
And as a young person, I saw

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the ripple effect that that had on
families, on communities, on the healthcare

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workers that were part of these families
journeys in their life. And going back

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to that, you know, entrepreneurial
instinct wanted to do something about solving that

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problem. You know, how can
we solve the problem at disease at its

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core? The camp is an amazing
resource, provides community for these young people

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and families, but how can we
stop disease itself and its tracks? And

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after being with the whole in the
Wall gang. For about ten years,

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I met a woman named Kathy Juicy
And this goes to your point, Dennis,

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about you know, people or moments
that may change the course of your

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trajectory. And she had an organization
called the Multiple Maloma Research Foundation, and

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their big goal was to you know, find treatments and a cure for multiple

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maloma, which is a rare blood
cancer. And Kathy was unique because she

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was a patient, but she wasn't
just any patient. She had a degree

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from Harvard Business School. She worked
in the pharmaceutical industry, and she received

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a diagnosis of cancer that her grandfather
had, you know, decades before,

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yet nothing had changed in the landscape. So she had this thesis and this

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hypothesis and this principle that look,
if we want to accomplish big things like

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carrying disease, we got to run
this like a fortune fifty company. You

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know, whether you're a nonprofit medical
research hospital, academic medical center, you

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need a good business model, right. And so Kathy became a mentor.

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I went to work for her,
and she really inspired me to go get

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a degree in business, right,
not a nonprofit or master's in health,

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because she said look, you know, business people are going to be the

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ones that can change the world in
medical research. So I did that,

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you know, I went and got
a business degree, and the whole time

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I thought about a simple question,
how can we make and accelerate treatments and

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cures for rare diseases? Right?
And part of the answer was, you

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know, it's a big complex ecosystem
in healthcare, right, So how do

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we get everybody at the same table. How do we align the interest and

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incentives of the patient community, their
families, the doctors and researchers that work

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on the disease, the biotech and
pharma companies that take these therapeutics to market,

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government that you know sits and gives
the ultimate say and approval. So

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did a lot of thinking about this, a lot of writing about this,

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and started coming up with ideas of
something that we call venture philanthropy, right,

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And what is venture philanthropy. It's
this concept that as a foundation,

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you don't just write checks and hope
for the best. You take your donor

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dollars and your funds raised and you
invest them like a venture capitalist was you

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fund research with the ability to app
upside if that's ever commercial utilized or successful,

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the return on investment becomes return on
impact because those dollars go back to

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the foundation to continue to fund more
research until we have treatments and cures.

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So there was a lot of thinking
about that and thinking about those concepts,

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and that's how I was introduced to
EB Research Partnership. All right, and

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I've got my math as almost six
years doing this. Is that correct?

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You're exactly correct, Dennis. All
right. I checked out my LinkedIn and

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I got that correct on the mask. So well, listen, we are

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here to talk about EB Research Partnership, and thanks for the introduction Michael and

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the company. And I'd like to
just first ask you and get our listeners

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acquainted and educated about what the mission
statement is of EB Research. Yeah.

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Well, you imagine, you know, being a parent, and you've never

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heard the words epidermal lisis belosa before. You imagine being a parent. You've

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never heard the words epidermal lisis blosa
before, and the first time you hear

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it is when you walk into a
hospital. You know, for many of

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us, the happiest day of our
lives delivering a baby, bringing a child

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into the world, and then you're
out is wisk away to the Nickey emergency

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room and they said, your child
has this thing called epidermallysis belosa, and

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we call it EB. For sure, it's not so easy to pronounce,

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but part of our mission is to
cure this so you never have to pronounce

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it again. So our big,
bold, audacious goal at EBRP is to

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cure EB by the end of this
decade and pioneer a new innovative business model

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that can apply to the four hundred
million people on this planet with a rare

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disease. So how did EB Research
Partnership start? A group of those parents,

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They looked around at the research landscape. There wasn't a lot of clinical

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trials, there wasn't a lot of
research, There wasn't a lot of activity

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in the space. And they took
it upon them to change that right,

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and you know, they had some
help along the way. We were really

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lucky to have. You know,
a group of those co founders be Jie

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and Eddie Vedder of the band Pearl
Jam and Jill's childhood friend had a son

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with the disease and so she wanted
to really use their platform and their power

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to change this existence. And I've
been in pediatric disease for twenty years.

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And you know, it's hard to
compare, but it's particularly one of the

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more devastating disease I've worked with.
Skin is the largest organ in the body,

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and for those born with EB the
skin just simply doesn't work right and

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it causes full body bandaging. Things
that you and I take for granted,

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Drinking a glass of water, getting
a good night's sleep, walking, talking,

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like monumental daily tasks. Right,
And so that's the bad news.

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The good news is eb's and monogenic
disease, which means it's caused by one

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genetic mutation that we know. So
that gives us hope, courage, optimism

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to charge forward with endless urgency to
reach that target of a cure by twenty

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thirty. And you know, the
rising tide lifts all ships. So we

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believe we have a model of business
that's working. You know, venture philanthropy,

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venture capital, impact, investing,
new technology models, not just funding

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research, but funding companies, not
just funding companies but starting companies. It's

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a new way to look at the
world. And we've seen impact when we

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started two clinical trials today more than
forty when we started no treatments and as

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we had the first very big milestone
approved treatment, a FDA approved treatment for

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EB and May of this year,
and it's a topical gene therapy, the

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first ever topical gene therapy that's not
a cure, but it gives us hope

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and promise and optimism. And I
talked to a mom of a young person

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with EB and she said it best. She said, Look, this just

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means that we'll have more kids to
cure. And I think that embodies that

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this is a big step in our
trajectory, but it's not the endgame,

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and it gives us more hope and
motivation to push towards that finish line when

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not only can we deliver a cure
for this disease, but hopefully along the

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way, lift up many other organizations
that pursue treatments and cures for their rare

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disease. Well, Michael, it's
pretty extraordinary in the short amount of time

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that you've had with all the researchers
and the doctors and the families and everybody

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about moving so quickly, and things
are moving quickly. You know, something

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struck me too in our conversation.
I know that you know, I talked

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to a lot of nonprofits out there, and a lot of agencies, a

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lot of people that do with you
do trying to hopefully cure a disease.

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We manage you, whether it's children, young adults, or adults. It's

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just amazing how many people like you
were out there. We're so thankful that

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there are angels like you and your
staff out there that do what you do.

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But with that said, you know, it struck me when you worked

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with the Paul Newman Foundation and then
you got introduced to Eddie that when these

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celebrities are these we well known famous
people have a platform that are going through

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something that you and I would be
going through, but we don't have that

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platform, it must really help you
in an extraordinary way. That's, you

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know, because it's just hard when
you run an organization, but to have

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somebody that has a pulpit social media
and a voice, and Eddie of course

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is legendary on talking about what's exactly
in his mind. I think it's extraordinary

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that you have this kind of partnership
and I'm sure you take advantage of it

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in all the good ways. Well, Dennis, you hit on a really

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key theme there and a key parallel
and I feel fortunate in my career to

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work with folks like that. And
there's some similarities, right. You look

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at Paul Newman and Joanne Woodward as
a couple, right with our couple,

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Yeah, our couple, and you
look at Jill Vedda and Eddie Better as

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a power couple. And what they
share is that you know, they have

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the platform, as you said,
and I don't think as a matter of

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fact, I know we wouldn't be
where we are on the trajectory of treatments

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and looking at cures for this disease
if it wasn't for Jill and Eddie.

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But what they share is not only
did they be generous enough to share their

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platform, but both of those groups
of power couples were never afraid to roll

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up their sleeves. You know,
Paul had a cabin on the camp.

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He was there, he was active, he participated, he was part of

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the leadership, part of the board. Jill and Eddie they are here.

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They are active, they are leaders
on the board, they are co founders.

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They're not just a voice that lends
their platform to this. They're actively

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engaged. You ask either about the
state of research and the strategy of the

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company, they'll be able to say
right away where we're going, where we're

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headed and why. So really fortunate
to combine, you know, individuals with

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the platform, but individuals that do
the hard work right and roll up their

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sleeves and are on the front lines
with the rest of the team that's chosen

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to pursue that ambitious goal. And
Michael, I like to talk to our

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leaders and our CEOs and founders about
the tough stuff too, And we always

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say that as much as work is
being done, we're moving closer to cures

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and whatever you're trying to solve,
your solving. But the world doesn't always

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unicorns and rainbows all the time when
it comes to your industry. What kind

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of challenges are you facing right now? Yeah, lots of challenges and healthcare,

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I think the central challenge for our
work, and I think many that

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are in medical research or medicine and
health is time. Time is the greatest

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asset we have, right and it's
the one thing that we can't control or

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get back. It rolls along right
and when you have a child or you

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are an individual that's battling a life
threatening, rare disease, time is a

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gift that you never forget about.
Ever, Right, the calock is ticking,

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and we hold that every day right
as the urgency that we carry to

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our jobs. You know, every
minute that a child's in pain that we

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can prevent and take away is something
that motivates and feels us every single day.

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If we can give you years back
with your love, if we can

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give you years without pain, if
we can restore years of being a child

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and being able to enjoy the things
that a child should without pain and suffering,

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that's the gift that we want to
give back. That's the asset,

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that's the value that we can deliver
as an organization. And so for us,

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you know, the challenge is things
never move fast enough. But the

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opportunity is to make things move faster
than they are today. Right, So

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we look at things like data and
technology being a lever for change and driving

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decisions that can inform speed and research
and development. We look at things like

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collaborations and incentivizing academic medical centers and
biotech companies to work together because we know

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via collaboration and healthcare it can shave
years off of delivering therapeutics to people that

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really deserve it. Right, And
we look at new business models challenging ourselves,

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not being comfortable with the status quo. You know, things have been

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done this way for a long time. We should do it. No,

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let's shake the boat. Let's try
venture capital, let's try impact investing right,

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Let's try new ways of investing.
Let's let's start our own companies right

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and see how that goes. So
I think having the courage to do the

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different thing, and as a way
to give that biggest asset back as much

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as we can, time becomes the
challenge, but also the opportunity. I'll

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tell you a quick story, Dennis, to tie you know where I'm from

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and what we do. There's something
that we say in the Midwest, and

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we say, do you know the
difference between a buffalo and a cow and

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a thunderstorm? And many don't.
But the difference is when a thunderstorm comes

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across the plains of Kansas, cows
run the opposite direction. They do the

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status quo. That's what they've always
done. Is a herd. So they

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follow the herd and they think they
can outrun it. But what happens is

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that thunderstorm never goes away. It
follows you and follows you around. Where

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buffalo do the exact opposite. They
turn and they run right towards the dang

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thing. Right. It's going to
be messy, it's going to be obstacles,

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it's going to be painful, there's
going to be challenges. But by

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doing that, you know, they
run through it and they get to the

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other side. And I think that's
the way that we view big, bold,

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audacious goals like carrying a disease.
Right, Let's do the hard thing.

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Let's get through those obstacles, let's
learn along the way. But our

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hope and our ambition and motivation is
to get on the other side, which

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is relieving the pain and suffering that
these families go through every minute of every

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day. Great saying and great analogy. I appreciate you sharing that on your

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gorgeous website that you have that we'll
give at the end of this interview.

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But a lot of are very intelligent
listeners have already found your website, so

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they're probably on there right now and
it's easy to navigate. But there are

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a couple different parts of the nab
Bar that I want to hit on with

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research and get involved. We'll do
get involved in just a second, because

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that's a real big deal here.
But when it comes to research and the

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impact, and of course the advisory
board, the trials, the council,

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and even applying for a GRAM.
I'm curious because you're running a company here

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and there's a lot of tentacles that
you've already described by what you do.

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How do you get to hear what's
going on with families and making a difference.

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Yeah, Well, you know,
when you have big goals like carrying

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disease and you run an organization of
this size, which has just exponentially grown

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so much, particularly in the last
few years, it's all about teams,

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right, and so the teams that
we bring to the table that guide us.

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You start with the patient. That's
our true north right. So we

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have patients on our board, the
directors, we have patient advisory boards.

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Every decision that we make, we'd
want to know how it impacts the patients,

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what a patients think, how do
they feel? So having them as

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the north star, the true guide
of what we do is important in every

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aspect of our operation. Number Two, that scientific advisory board that you mentioned,

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you know, bringing together the most
brilliant scientists not only for eb not

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only for dermatology, but across multiple
different sectors and industry as well. They

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can vet the science, right,
they can help us understand not only we're

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the best investments with the highest impact
that serve the patients, but are they

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synergistic with things that we're already doing. Do they complement things that we're already

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doing. Can they put speed into
things that we've already funded. Will this

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thing that we fund today be increased
because of what we funded previously. Then

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the third is really that medical community, right, getting researchers together, whether

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they've worked an eb before or we're
trying to draw them into our field,

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to understand that, hey, we've
got funding available, we've got resources available,

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we've got a motivated group of pats, we've got a data set as

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a starting point that can provide you
information to put speed into your understanding of

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this disease and your discovery and this
disease. So you know, but having

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those three groups alone doesn't do you
much good. So finding opportunities to bring

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those groups together where everybody can hear
the unique person's perspective, and sometimes that's

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literally sitting in a room with everybody
at the table, so everybody can be

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informed of the ones needs and desires
of the other stakeholders in the community,

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and sometimes that's just informing everybody along
every step of the process. Patients,

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what do you think about this research
that we're going to fund, researchers,

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what do you think about what our
patients are asking for biotech and pharma,

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what do you think about what we're
hearing from the academic medical center, community

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and patients as well, and just
really having strong communication And at the end

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of that, if we can align
incentives of all those groups, everybody wants

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the same thing. We all want
treatments, we all eventually want a cure.

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So that's a big part of how
we run our operation as inclusion of

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those diverse array of opinions and thoughts
and and desires. Michael, it's really

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clear than in the six years you've
been very sustainable. What about growth?

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I know you're always looking to the
future. What's the future look like.

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Well, the future looks like first
and foremost, more treatments for this disease,

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for every subtype of this disease.
The future beyond that looks like a

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cure. You know, we are
funding research now that by medical definition is

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definitive and curative, which you know, we can all talk about it,

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right. But when the academics and
doctors and researchers start using words like definitive

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and curative, that motivates us,
that fires us up, That gives us

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an endgame to run to. So
and beyond that, what we've realized is

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the model that we have is exemplary
and pioneering for rare disease. Right forty

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clinical trials. If you think about
four hundred million people with a rare disease,

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almost ten percent of the planet is
affected by a rare disease, yet

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ninety five percent don't have a single
FDA approved treatment. So we've been able

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to cross over into that five percent
threshold. We want to take what we've

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learned and help other rare disease organizations, help other families that battle this.

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Right, you learn more from your
mistakes, and we've made plenty of them,

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but along the way, that's given
us a roadmap, a blueprint for

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a ture, if you will,
and we want to make sure that that

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can benefit others working in this space. Michael, I want to leave a

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couple last words for you and give
you the platform. And we've been educated

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and we're once again we're going to
be at a website to everybody and how

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you can get involved. But that
really is the big thing about getting involved.

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And there's a lot of different things
on the website you can go through,

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but if you could just maybe hand
on some of the bullet points about

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getting involved in what people that are
listening to this interview today, what can

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they do well? First of all, ww dot eb research dot org.

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You can learn all about our mission. We always have the highest standards for

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transparency. You can read all our
financials, you can see where every penny

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goes. You can learn about our
teams, you can learn about our mission

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and our vision. You know what
you're doing here. Dennis is letting us

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share our mission on a platform to
all the listeners that you have, anybody

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that's willing to share the story and
talk to folks about it. It's the

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biggest help. Whether you you know, tell ten friends or you go on

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a giant podcast where millions of people
can hear it is a massive help.

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Right. And number three, I
think really trying to figure out you know,

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we like to say we want to
put the fund in fundraising and philanthropy.

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Right, what do you like to
do? Do you like music?

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Great? We do concerts. Do
you like sports? Great, we do

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sporting events. Do you like to
do events or golf or you know,

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wine tastings or you know something more
low key, whatever it is, there's

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a place for everybody to figure out
a way to engage their communities and continue

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to spread the mission. Michael,
if you want to leave, maybe just

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one takeaway. And I know it's
stopped, but if there was one takeaway

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you want to listen to go away
with when it comes to EB Research Partnership,

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what would that be? Well,
I think about and I'm going to

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paraphrase this, but Muhammad Ali said
something to the effect of services, the

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rent that we pay for our time
here on Earth. And you know I've

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been rewarded in my life and I
know you as well, Dennis, because

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we've chatted about this, to live
a life of purpose, you know,

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feeling that my life is in service
to others, that my hours, my

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talents, my skills could be used
to benefit somebody on this planet that really

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deserves to benefit from any skills or
resources any of us have. So one

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big takeaway, whether you get involved
with EVRP or another organization, I would

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challenge anybody that's listening figure out what
your gift to this world is, what

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your skill is, what your purpose, and figure out a way that you

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can give that to others, because
there's certainly no greater reward. Well said,

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and I agree, let's give that
website one more time. Michael,

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ww dot ebresearch dot org. Well, listen, man, in the short

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time we got to know each other, I can't tell you how much I

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appreciate your valuable time. But you're
making a difference out there, and that's

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all you can ask when we get
up, try and make a difference out

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there. So you and your team
are doing that with the researchers, the

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doctors and helping out families and children. Michael, it's absolutely extraordinary to talk

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to you. Listen, continue success
and we really appreciate you joining us on

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CEOs. You should know. Thank
you so much. Dennis