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November 9, 2023 23 mins
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(00:00):
My origin story started in the FlintHills of Kansas. I grew up on
a cattle ranch at a rural areaand just a real lovely way to grow
up. Incredibly proud of where I'mfrom and the way I grew up.
I think when you grow up ina 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

(00:23):
neighbor. You need your neighbor toaccomplish the things that you set out to
accomplish. Number Two, you know, there's just a work ethic of hard
work, right. You get upwhen 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 dothat, but being proud of your work,

(00:44):
right, having something to show foryour work, and being able to
help those around you. And thennumber three, there's something about the humility
of the Midwest and growing up inan environment like that, in a community
where you never get too big foryour bridges, so to speak, right,
and people around and you helped remindyou of that. So it was
a really lovely way to grow up. What brought me to the East Coast

(01:06):
and really helped me launch this careerthat I've chosen is you know, my
grandfather was not from the Midwest onmy mom's side. He was from the
East Coast in New York, andyou know, became a very successful entrepreneur.
And as a child, I wasalways just very curious and that led
me to be entrepreneurial in many differentways, whether it was a farm stand
or starting a business. Was alwaysjust curious about the world around me and

(01:29):
really rooted in solving problems. Ithink led to that curiosity. So I
always would ask my grandfather, youknow, tell me about life, tell
me about business, tell me everythingyou know, going back as far as
I can remember, and there wasa story that he always would come back
to, and he said, Ican do that. But what I think
life is about is what this guynamed Paul Newman has done. And you
know some of us remember Paul Newman, but legendary actor, a race car

(01:53):
driver, entrepreneur, and philanthropist.And my grandfather had the opportunity to work
with him at one point in hiscareer and he said, here's a guy
that achieved this massive success in manydifferent areas in his life, but what
he's decided to do with that platformis to turn around and give it back
to other people. And he toldme about a camp that Paul had started
in the woods of Connecticut called theHole in the Wall Gang Camp, named

(02:15):
after, of course, the famousmovie Butch Cassidy and the Sundance Kid.
And the concept was at its core, relatively simple. Kids that battle serious
illness like cancer, sickle cell HIVlife threatening illness oftentimes are robbed of the
chance to be a child and experiencethings that normal children get to do.
So let's create this camp that's medicallysafe, where kids on active chemo can

(02:39):
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 whenyou walked around it, but it was
a safe place for children. Soas soon as I learned that I could
volunteer at eighteen years old, Igot in my beat up truck from Kansas
and I drove across the country tocon Etiquette and that was really a life

(03:01):
changing moment, I guess you couldsay was my origin story. Had the
opportunity to work with fourteen and fifteenyear old young people that were born with
HIV AIDS, and they came fromplaces that I wasn't that familiar with,
you know, cities like Boston andNew York and Washington, d C.
And it was a real reset forme in my life as an eighteen year

(03:23):
old to learn that the world ais so much bigger than you and b
you know, these were young peoplethat didn't choose this hand that they were
dealt. They were born with thesediseases. They were born with this illness.
And I realized, if I'm ina position to use my time and
talents in my life to be ableto help these young people that battle disease,
then I how to do that.So that really inspired me for a

(03:44):
career in the space. And Igot to work with Paul for almost ten
years in his organization and met amazingfamilies, got to work in hospitals throughout
the Northeast, and really launched acareer under the simple principle that you know,
if you want to meet some ofthe most resist brave, courageous people
you've ever met, meet young peoplebattling disease, and they can teach you
a lot about courage and bravery inyour own life. Well that's well,

(04:06):
Sad, thanks for sharing all that. And it always amazes me Michael in
the series that a book, aperson, an event can change your life
so drastically. It's something you neverplan on doing and now you're doing it
knocking out of the park. Sowe'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 thingsthat you did before that. I know

(04:28):
you talked about the few things thatyou were doing, and I also want
to talk about the idea of actuallycoming up with a company, because I
think that's fascinating to myself and allour listeners as well, in that epiphany
about Hey, I think there's awhole 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 myfirst job was working for Paul Newman at
the whole New Wogang camp and Istarted just helping families get to the camp.

(04:50):
It's a free resource, so goingto sit in hospitals, meeting with
social workers, doctors, nurses,parents. You know, you'd imagine if
you have a child that's in thehospital majority of the year, saying we're
going to send them to a campby themselves for a week, I can
seem pretty daunting. So it wascertainly a fast lesson right and how to
work with these communities and work inthe healthcare ecosystem right and the organization was

(05:15):
will always have a giant place inmy 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 onfamilies, on communities, on the healthcare
workers that were part of these familiesjourneys in their life. And going back

(05:38):
to that, you know, entrepreneurialinstinct wanted to do something about solving that
problem. You know, how canwe solve the problem at disease at its
core? The camp is an amazingresource, provides community for these young people
and families, but how can westop disease itself and its tracks? And
after being with the whole in theWall gang. For about ten years,
I met a woman named Kathy JuicyAnd this goes to your point, Dennis,

(06:00):
about you know, people or momentsthat may change the course of your
trajectory. And she had an organizationcalled 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 bloodcancer. And Kathy was unique because she
was a patient, but she wasn'tjust any patient. She had a degree

(06:20):
from Harvard Business School. She workedin the pharmaceutical industry, and she received
a diagnosis of cancer that her grandfatherhad, 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 runthis like a fortune fifty company. You

(06:42):
know, whether you're a nonprofit medicalresearch 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 inmedical research. So I did that,

(07:03):
you know, I went and gota 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 ecosystemin healthcare, right, So how do
we get everybody at the same table. How do we align the interest and

(07:23):
incentives of the patient community, theirfamilies, the doctors and researchers that work
on the disease, the biotech andpharma companies that take these therapeutics to market,
government that you know sits and givesthe ultimate say and approval. So
did a lot of thinking about this, a lot of writing about this,
and started coming up with ideas ofsomething that we call venture philanthropy, right,

(07:45):
And what is venture philanthropy. It'sthis concept that as a foundation,
you don't just write checks and hopefor the best. You take your donor
dollars and your funds raised and youinvest them like a venture capitalist was you
fund research with the ability to appupside if that's ever commercial utilized or successful,
the return on investment becomes return onimpact because those dollars go back to
the foundation to continue to fund moreresearch until we have treatments and cures.

(08:09):
So there was a lot of thinkingabout that and thinking about those concepts,
and that's how I was introduced toEB Research Partnership. All right, and
I've got my math as almost sixyears doing this. Is that correct?
You're exactly correct, Dennis. Allright. 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

(08:30):
the company. And I'd like tojust first ask you and get our listeners
acquainted and educated about what the missionstatement 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 blosabefore, and the first time you hear

(08:50):
it is when you walk into ahospital. You know, for many of
us, the happiest day of ourlives delivering a baby, bringing a child
into the world, and then you'reout is wisk away to the Nickey emergency
room and they said, your childhas 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 tocure this so you never have to pronounce

(09:11):
it again. So our big,bold, audacious goal at EBRP is to
cure EB by the end of thisdecade and pioneer a new innovative business model
that can apply to the four hundredmillion people on this planet with a rare
disease. So how did EB ResearchPartnership start? A group of those parents,
They looked around at the research landscape. There wasn't a lot of clinical

(09:33):
trials, there wasn't a lot ofresearch, There wasn't a lot of activity
in the space. And they tookit upon them to change that right,
and you know, they had somehelp 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 PearlJam and Jill's childhood friend had a son
with the disease and so she wantedto really use their platform and their power

(09:56):
to change this existence. And I'vebeen in pediatric disease for twenty years.
And you know, it's hard tocompare, 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 theskin just simply doesn't work right and
it causes full body bandaging. Thingsthat you and I take for granted,

(10:16):
Drinking a glass of water, gettinga 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 monogenicdisease, which means it's caused by one
genetic mutation that we know. Sothat gives us hope, courage, optimism
to charge forward with endless urgency toreach that target of a cure by twenty
thirty. And you know, therising tide lifts all ships. So we

(10:39):
believe we have a model of businessthat's working. You know, venture philanthropy,
venture capital, impact, investing,new technology models, not just funding
research, but funding companies, notjust funding companies but starting companies. It's
a new way to look at theworld. And we've seen impact when we
started two clinical trials today more thanforty when we started no treatments and as

(11:00):
we had the first very big milestoneapproved 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 nota cure, but it gives us hope
and promise and optimism. And Italked 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 tocure. And I think that embodies that

(11:22):
this is a big step in ourtrajectory, but it's not the endgame,
and it gives us more hope andmotivation to push towards that finish line when
not only can we deliver a curefor this disease, but hopefully along the
way, lift up many other organizationsthat pursue treatments and cures for their rare
disease. Well, Michael, it'spretty extraordinary in the short amount of time
that you've had with all the researchersand the doctors and the families and everybody
about moving so quickly, and thingsare moving quickly. You know, something

(11:45):
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 youdo 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 youwere out there. We're so thankful that
there are angels like you and yourstaff out there that do what you do.
But with that said, you know, it struck me when you worked

(12:07):
with the Paul Newman Foundation and thenyou got introduced to Eddie that when these
celebrities are these we well known famouspeople have a platform that are going through
something that you and I would begoing through, but we don't have that
platform, it must really help youin an extraordinary way. That's, you
know, because it's just hard whenyou run an organization, but to have

(12:28):
somebody that has a pulpit social mediaand a voice, and Eddie of course
is legendary on talking about what's exactlyin his mind. I think it's extraordinary
that you have this kind of partnershipand 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 paralleland I feel fortunate in my career to

(12:48):
work with folks like that. Andthere's some similarities, right. You look
at Paul Newman and Joanne Woodward asa couple, right with our couple,
Yeah, our couple, and youlook at Jill Vedda and Eddie Better as
a power couple. And what theyshare 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 bewhere we are on the trajectory of treatments

(13:11):
and looking at cures for this diseaseif it wasn't for Jill and Eddie.
But what they share is not onlydid they be generous enough to share their
platform, but both of those groupsof 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.

(13:33):
They are active, they are leaderson the board, they are co founders.
They're not just a voice that lendstheir platform to this. They're actively
engaged. You ask either about thestate of research and the strategy of the
company, they'll be able to sayright away where we're going, where we're
headed and why. So really fortunateto combine, you know, individuals with
the platform, but individuals that dothe hard work right and roll up their

(13:54):
sleeves and are on the front lineswith the rest of the team that's chosen
to pursue that ambitious goal. AndMichael, I like to talk to our
leaders and our CEOs and founders aboutthe tough stuff too, And we always
say that as much as work isbeing 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 whenit comes to your industry. What kind

(14:16):
of challenges are you facing right now? Yeah, lots of challenges and healthcare,
I think the central challenge for ourwork, and I think many that
are in medical research or medicine andhealth is time. Time is the greatest
asset we have, right and it'sthe one thing that we can't control or
get back. It rolls along rightand when you have a child or you

(14:37):
are an individual that's battling a lifethreatening, rare disease, time is a
gift that you never forget about.Ever, Right, the calock is ticking,
and we hold that every day rightas the urgency that we carry to
our jobs. You know, everyminute that a child's in pain that we
can prevent and take away is somethingthat motivates and feels us every single day.
If we can give you years backwith your love, if we can

(15:00):
give you years without pain, ifwe can restore years of being a child
and being able to enjoy the thingsthat a child should without pain and suffering,
that's the gift that we want togive back. That's the asset,
that's the value that we can deliveras an organization. And so for us,
you know, the challenge is thingsnever move fast enough. But the
opportunity is to make things move fasterthan they are today. Right, So
we look at things like data andtechnology being a lever for change and driving

(15:24):
decisions that can inform speed and researchand development. We look at things like
collaborations and incentivizing academic medical centers andbiotech companies to work together because we know
via collaboration and healthcare it can shaveyears off of delivering therapeutics to people that
really deserve it. Right, Andwe look at new business models challenging ourselves,
not being comfortable with the status quo. You know, things have been

(15:46):
done this way for a long time. We should do it. No,
let's shake the boat. Let's tryventure 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. SoI think having the courage to do the
different thing, and as a wayto give that biggest asset back as much
as we can, time becomes thechallenge, but also the opportunity. I'll

(16:07):
tell you a quick story, Dennis, to tie you know where I'm from
and what we do. There's somethingthat we say in the Midwest, and
we say, do you know thedifference 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, cowsrun the opposite direction. They do the
status quo. That's what they've alwaysdone. Is a herd. So they

(16:27):
follow the herd and they think theycan outrun it. But what happens is
that thunderstorm never goes away. Itfollows you and follows you around. Where
buffalo do the exact opposite. Theyturn and they run right towards the dang
thing. Right. It's going tobe messy, it's going to be obstacles,
it's going to be painful, there'sgoing to be challenges. But by
doing that, you know, theyrun through it and they get to the

(16:48):
other side. And I think that'sthe 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'slearn along the way. But our
hope and our ambition and motivation isto get on the other side, which
is relieving the pain and suffering thatthese families go through every minute of every
day. Great saying and great analogy. I appreciate you sharing that on your

(17:08):
gorgeous website that you have that we'llgive at the end of this interview.
But a lot of are very intelligentlisteners have already found your website, so
they're probably on there right now andit's easy to navigate. But there are
a couple different parts of the nabBar that I want to hit on with
research and get involved. We'll doget 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 advisoryboard, the trials, the council,

(17:29):
and even applying for a GRAM.I'm curious because you're running a company here
and there's a lot of tentacles thatyou've already described by what you do.
How do you get to hear what'sgoing on with families and making a difference.
Yeah, Well, you know,when you have big goals like carrying
disease and you run an organization ofthis size, which has just exponentially grown
so much, particularly in the lastfew years, it's all about teams,

(17:52):
right, and so the teams thatwe bring to the table that guide us.
You start with the patient. That'sour true north right. So we
have patients on our board, thedirectors, we have patient advisory boards.
Every decision that we make, we'dwant to know how it impacts the patients,
what a patients think, how dothey feel? So having them as
the north star, the true guideof what we do is important in every
aspect of our operation. Number Two, that scientific advisory board that you mentioned,

(18:15):
you know, bringing together the mostbrilliant scientists not only for eb not
only for dermatology, but across multipledifferent 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 impactthat serve the patients, but are they
synergistic with things that we're already doing. Do they complement things that we're already

(18:37):
doing. Can they put speed intothings that we've already funded. Will this
thing that we fund today be increasedbecause 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'retrying to draw them into our field,
to understand that, hey, we'vegot funding available, we've got resources available,

(18:57):
we've got a motivated group of pats, we've got a data set as
a starting point that can provide youinformation to put speed into your understanding of
this disease and your discovery and thisdisease. So you know, but having
those three groups alone doesn't do youmuch good. So finding opportunities to bring
those groups together where everybody can hearthe unique person's perspective, and sometimes that's

(19:18):
literally sitting in a room with everybodyat the table, so everybody can be
informed of the ones needs and desiresof the other stakeholders in the community,
and sometimes that's just informing everybody alongevery step of the process. Patients,
what do you think about this researchthat we're going to fund, researchers,
what do you think about what ourpatients are asking for biotech and pharma,

(19:38):
what do you think about what we'rehearing from the academic medical center, community
and patients as well, and justreally having strong communication And at the end
of that, if we can alignincentives of all those groups, everybody wants
the same thing. We all wanttreatments, we all eventually want a cure.
So that's a big part of howwe run our operation as inclusion of
those diverse array of opinions and thoughtsand and desires. Michael, it's really

(20:00):
clear than in the six years you'vebeen very sustainable. What about growth?
I know you're always looking to thefuture. What's the future look like.
Well, the future looks like firstand foremost, more treatments for this disease,
for every subtype of this disease.The future beyond that looks like a
cure. You know, we arefunding research now that by medical definition is
definitive and curative, which you know, we can all talk about it,

(20:23):
right. But when the academics anddoctors and researchers start using words like definitive
and curative, that motivates us,that fires us up, That gives us
an endgame to run to. Soand beyond that, what we've realized is
the model that we have is exemplaryand pioneering for rare disease. Right forty
clinical trials. If you think aboutfour hundred million people with a rare disease,
almost ten percent of the planet isaffected by a rare disease, yet

(20:47):
ninety five percent don't have a singleFDA approved treatment. So we've been able
to cross over into that five percentthreshold. 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 yourmistakes, and we've made plenty of them,
but along the way, that's givenus a roadmap, a blueprint for
a ture, if you will,and we want to make sure that that

(21:07):
can benefit others working in this space. Michael, I want to leave a
couple last words for you and giveyou the platform. And we've been educated
and we're once again we're going tobe at a website to everybody and how
you can get involved. But thatreally is the big thing about getting involved.
And there's a lot of different thingson the website you can go through,
but if you could just maybe handon some of the bullet points about
getting involved in what people that arelistening to this interview today, what can

(21:30):
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 ourfinancials, you can see where every penny
goes. You can learn about ourteams, you can learn about our mission
and our vision. You know whatyou're doing here. Dennis is letting us
share our mission on a platform toall the listeners that you have, anybody

(21:51):
that's willing to share the story andtalk 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 peoplecan hear it is a massive help.
Right. And number three, Ithink really trying to figure out you know,
we like to say we want toput the fund in fundraising and philanthropy.
Right, what do you like todo? Do you like music?
Great? We do concerts. Doyou like sports? Great, we do

(22:14):
sporting events. Do you like todo events or golf or you know,
wine tastings or you know something morelow key, whatever it is, there's
a place for everybody to figure outa 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'sstopped, but if there was one takeaway
you want to listen to go awaywith when it comes to EB Research Partnership,

(22:36):
what would that be? Well,I think about and I'm going to
paraphrase this, but Muhammad Ali saidsomething to the effect of services, the
rent that we pay for our timehere on Earth. And you know I've
been rewarded in my life and Iknow you as well, Dennis, because
we've chatted about this, to livea life of purpose, you know,
feeling that my life is in serviceto others, that my hours, my

(22:57):
talents, my skills could be usedto benefit somebody on this planet that really
deserves to benefit from any skills orresources any of us have. So one
big takeaway, whether you get involvedwith EVRP or another organization, I would
challenge anybody that's listening figure out whatyour gift to this world is, what
your skill is, what your purpose, and figure out a way that you

(23:18):
can give that to others, becausethere's certainly no greater reward. Well said,
and I agree, let's give thatwebsite 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'remaking a difference out there, and that's
all you can ask when we getup, try and make a difference out
there. So you and your teamare doing that with the researchers, the
doctors and helping out families and children. Michael, it's absolutely extraordinary to talk

(23:42):
to you. Listen, continue successand we really appreciate you joining us on
CEOs. You should know. Thankyou so much. Dennis
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