February 21, 2024 • 24 mins
Michael Hund is the CEO of EB Research Partnership (EBRP), a trailblazing medical research organization focused on curing Epidermolysis Bullosa (EB), a life-threatening genetic skin disease. Under his leadership EBRP has accelerated the landscape from 2 to over 40 clinical trials and via their award winning venture philanthropy methodology funded the first FDA approved treatment for EB in 2023, the first ever topical gene therapy.
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(00:00):
Michael Hunt is the CEO of EBResearch Partnership. His mission is to find
a cure for a painful and sometimesfatal childhood disease called EB. What sent
them on this path to make lifebetter for thousands of people every year?
It's an incredible story of how someone'searly adult experiences can influence them and the
(00:22):
rest of the world for the restof their life. Here's our powerful conversation
with the CEO of EB Research PartnershipGroup, Michael Hunt. My origin story
started in the Flint Hills of Kansas. I grew up on a cattle ranch
at a rural area and just areal lovely way to grow up. Incredibly
proud of where I'm from and theway I grew up. I think when
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you grow up in a small town, when you grow up on a ranch
and a farm, teaches you afew things. But number one the strength
and community. Right, You reallygot to rely on your neighbor. You
need your neighbor to accomplish the thingsthat you set out to accomplish. Number
two, you know there there's justa work ethic of hard work, right.
You get up when the sun comesup, and you stop working when
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the sun goes down and that wasjust a great lesson to learn as a
youngster, right, just that notonly that the hard work and the time
it takes to do that, butbeing 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 likethat, in a community where you never
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get too big for your bridges,so to speak, right, and people
around you help remind you of that. So it was a really lovely way
to grow up. What brought meto the East Coast and really helped 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, becamea very successful entrepreneur. And as a
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child, I was always just verycurious, and that led me to be
entrepreneurial in many different ways, whetherit was a farm stand or starting a
business. Was always just curious aboutthe world around me and really rooted in
solving problems. I think led tothat curiosity. So I always would ask
my grandfather, you know, tellme about life. Tell me about business.
Tell me everything you know, goingback as far as I can remember,
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when there was a story that healways would come back to, and
he said, I can do that. But what I think life is about
is what this guy named Paul Newmanhas done. And you know, some
of us remember Paul Newman, butlegendary actor, a race car driver,
entrepreneur, and philanthropist. And mygrandfather had the opportunity to work with him
at one point in his career,and he said, here's a guy that
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achieved this massive success in many differentareas in his life, but what he's
decided to do with that platform isto turn around and give it back to
other people. And he told meabout a camp that Paul had started in
the woods of Connecticut called the Holein the Wall Gang Camp, named after,
of course, the famous movie ButchCassidy and the Sundance Kid. And
the concept was at its core relativelysimple. Kids that battle serious illness like
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cancer, sickle cell HIV like threateningyou knows, 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 ride
horses and climb rock walls, andkids with sickle cell can swim and swimming
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pools, and you know, reallythis inclusive environment where you wouldn't even know
it was a medical facility when youwalked around it, but it was a
safe place for children. So assoon as I learned that I could volunteer
at eighteen years old, I gotin my beat up truck from Kansas and
I drove across the country to Connecticut. And that was really a life changing
moment. I guess you could sayit was my origin story. I had
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the opportunity to work with fourteen andfifteen year old young people that were born
with HIVAS, 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
old to learn that the world aIs so much bigger than you and b.
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You know, these were young peoplethat didn't choose the hand that they
were dealt. They were born withthese diseases, they were born with this
illness. And I realized, ifI'm in a position to use my time
and talents in my life to beable to help these young people that battle
disease. Then I how to dothat. So that really inspired me for
a career in the space. AndI got to work with Paul for almost
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ten years in his organization and metamazing families, got to work in hospitals
throughout the Northeast, and really launcheda career under the simple principle that if
you want to meet some of themost resilient, brave, courageous people you've
ever met, meet young people battlingdisease and they can teach you a lot
about courage and bravery in your ownlife. Well that's well said. Thanks
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for sharing all that. And italways amazes me Michael in the series that
a book, a person, anevent can change your life so drastically.
It's something you never plan on doingand now you're doing it knocking out of
the park. So we're here totalk about EBE Research partnership. A lot
before we do that, I wantto give a little context to our listeners
about all the things that you didbefore that. I know you talked about
(05:00):
the few things that you were doing, and I also want to talk about
the idea of actually coming up witha 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 industryand I think I can do something pretty
special here. But what did youdo before you started EB research. Yeah,
so my first job was working forPaul Newman at the Whole in the
Wall Gang Camp and I started justhelping families get to the camp. It's
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a free resource, so going tosit in hospitals, meeting with social workers,
doctors, nurses, parents. Youknow, you'd imagine if you have
a child that's in the hospital themajority of the year, saying we're going
to send them to a camp bythemselves for a week, I can seem
pretty daunting. So it was certainlya fast lesson right and how to work
with these communities and work in thehealthcare ecosystem right. And the organization was
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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
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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 Juicy Andthis goes to your point, Dennis,
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about you know, people or momentsthat may change the course of your trajectory.
And she had an organization called theMultiple 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 justany patient. She had a degree from
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Harvard Business School. She worked inthe pharmaceutical industry, and she received a
diagnosis of cancer that her grandfather hadyou know, decades before, yet nothing
had changed in the landscape. Soshe had this thesis and this hypothesis and
this principle that look, if wewant to accomplish big things like carrying disease,
we got to run this like afortune fifty company. You know,
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whether you're a nonprofit medical research hospital, academic medical center, you need a
good business model, right. Andso Kathy became a mentor. I went
to work for her, and shereally inspired me to go get a degree
in business, right, not innonprofit 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 medicalresearch. So I did that, you
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know, I went and got abusiness degree, and the whole time I
thought about a simple question, howcan we make and accelerate treatments and cures
for rare diseases? Right? Andpart 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
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of the patient community, their families, the doctors and research that work on
the disease, the biotech and pharmacompanies that take these therapeutics to market,
government that sits and gives the ultimatesaying approval. So did a lot of
thinking about this, a lot ofwriting about this, and started coming up
with ideas as something that we callventure philanthropy, right, And what is
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venture philanthropy. It's this concept thatas 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 likea venture capitalist was. You fund research
with the ability to app upside ifthat's ever commercialized or successful. The return
on investment becomes return on impact becausethose dollars go back to the foundation to
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continue to fund more research until wehave treatments and cures. So there was
a lot of thinking about that andthinking 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 checkedout my LinkedIn and I got that
correct on the mask. So well, listen, we are here to talk
about EB Research Partnership and thanks forthe introduction Michael and the company. And
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I'd like to just first ask youand get our listeners acquainted and educated about
what the mission statement is. OfEB Research. Yeah, well, you
imagine, you know, you imaginebeing a parent. You've never heard the
words epidermal lisis blosa before, andthe first time you hear it is when
you walk into a hospital. Youknow, for many of us, the
happiest day of our lives delivering ababy, bringing a child into the world,
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and then your child is whisked awayto the nicky emergency room and they
said, your child has this thingcalled epidermal lisis blosa and we call it
EB. For sure, it's notso easy to pronounce. But part of
our mission is to cure this soyou never have to pronounce it again.
So our big, bold, audaciousgoal at EBRP is to cure EB by
the end of this decade and pioneera new innovative business model that can apply
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to the four hundred million people onthis planet with a rare disease. So
how did EB Research Partnership start thegroup of those parents. They looked around
at the research landscape. There wasn'ta lot of clinical trials, there wasn't
a lot of reas, there wasn'ta lot of activity in the space.
And they took it upon them tochange that. Right, and you know,
they had some help along the way. We were really lucky to have,
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you know, a group of thoseco founders, b Jill and Eddie
Vedder of the band Pearl Jam andJill's childhood friend had a son with the
disease, and so she wanted toreally use their platform and their power to
change this existence. And I've beenin 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. Skinis 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 it causes full body bandaging.Things that you and I take for granted,
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 a monogenicdisease, which means it's caused by
one genetic mutation that we know.So that gives us hope, courage,
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optimism to charge forward with endless urgencyto 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 ofbusiness 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.
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It's a new way to look atthe world. And we've seen impact when
we started two clinical trials today morethan forty when we started no treatments,
Dennis. We had the first,a very big milestone approved treatment FDA approved
treatment for EB and May of thisyear, and it's a topical gene therapy,
the first ever topical gene therapy that'snot a cure, but it gives
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us hope and promise and optimism.And I talked to a mom of a
young person with EB and she saidit best. She said, Look,
this just means that we'll have morekids to cure. And I think that
embodies that this is a big stepin our trajectory, but it's not the
endgame, and it gives us morehope and motivation to push towards that finish
line when not only can we delivera cure for this disease, but hopefully
along the way, lift up manyother organizations that pursue treatments and cures.
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For their rare disease. Well,Michael, it's pretty extraordinary in the short
amount of time that you've had withall the researchers and the doctors and the
families and everybody about moving so quicklyand things are moving quickly. You know,
something struck me too in our conversation. I know that you know,
I talked to a lot of nonprofitsout there and a lot of agencies and
a lot of people that do withyou do trying to hopefully cure a disease,
we manage it, whether it's children, young adults, or adults.
(12:22):
It's just amazing how many people likeyou were out there, were so thankful
that there are angels like you andyour 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 andthen you got introduced to Eddie that when
these celebrities are these well well known, famous people have a platform that are
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going through something that you and Iwould be going through, but we don't
have that platform, it must reallyhelp you in an extraordinary way. That's
you know, because it's just hardwhen you run an organization, but to
have somebody that has a pulpit,social media and a voice, and Eddie
of course is legend talking about what'sexact then in his mind. I think
it's extraordinary they have this kind ofpartnership and I'm sure you take advantage of
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it in all the good ways.Well, Dennis, you hit on a
really key theme there and a keyparallel, 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 Woodwardas a couple, right with they are
a couple, power couple, andyou look at Jill Vedder and Eddi Vedder
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as a power couple. And whatthey 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'tbe where we are on the trajectory of
treatments and looking at cures for thisdisease if 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 thosegroups of power couples were never afraid to
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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 leaderson the board, they are co
founders. They're not just a voicethat lends their platform to this. They're
actively engaged. You ask either aboutthe state of research and the strategy of
the company, they'll be able tosay right away where we're going, where
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we're headed, and why. Soreally fortunate to combine individuals with the platform,
but individuals that do the hard workright and roll up their sleeves and
are on the front lines with therest of the team that's chosen to pursue
that ambitious goal. So, Michael, I like to talk to our leaders
and our CEOs and founders about thetough stuff too. And we always say
that as much as work is beingdone, we're moving closer to cures and
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whatever you're trying to solve your solving. But the world doesn't always unicorns and
rainbows all the time when it comesto 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 istime. Time is the greatest asset we
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have, right, and it's theone 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 alife threatening, rare disease, time is
a gift that you never forget aboutever. Right. The clock is ticking
and we hold that every day rightas the urgency that we carry to our
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jobs. You know, every minutethat a child's in pain that we can
prevent and take away is something thatmotivates and feels us every single day.
If we can give you years backwith your loved one, if we can
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,
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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
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
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via collaboration and healthcare it can shaveyears off of delivering therapeutics to people that
really deserve it. Right. Andwe look at the new business models,
challenging ourselves, not being comfortable withthe status quo. You know things have
been done this way for a longtime. 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 ofinvesting. Let's start our own companies right
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and see how that goes. SoI think having the courage to do the
different thing as a way to givethat biggest asset back as much as we
can. Time becomes a challenge,but also the opportunity. I'll tell you
a quick story, Dennis, totie you know where I'm from and what
we do. There's something that wesay in the Midwest, and we say,
do you know the difference between abuffalo and a cow and a thunderstorm?
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And many don't, But the differenceis when a thunderstorm comes across the
plains of Kansas. Cows run theopposite direction. They do the status quo.
That's what they've always done, isa herd. So they follow the
herd, and they think they canoutrun it. But what happens is that
thunderstorm never goes away. It followsyou and follows you around where buffalo do
the exact opposite. They turn andthey run right towards the same thing.
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Right, it's going to be messy, it's going to be obstacles, it's
going to be painful, there's goingto be challenges. But by doing that,
you know, they run through itand they get to the other side.
And I think that's the way thatwe view big, bold, audacious
goals like carrying a disease. Right, let's do the hard thing, Let's
get through those obstacles, let's learnalong the way. But our hope and
our ambition and our motivation is toget on the other side, which is
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relieving the pain and suffering that thesefamilies go through every minute of every day.
Great saying and great analogy. Appreciateyou sharing that on your gorgeous website
that you have that we'll give atthe end of this interview. But a
lot of are very intelligent listeners havealready found your website, so they're probably
on the right now and it's easyto navigate. But there are a couple
different parts of the nab Bar thatI want to hit on. With research
and get involved. We'll do getinvolved in just a second, because that's
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a real big deal here. Butwhen 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 curiousbecause you're running a company here and there's
a lot of tentacles that you've alreadydescribed to what you do. How do
you get to hear what's going onwith families and making a difference. Yeah,
well, you know, when youhave big goals like carrying disease and
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you run an organization of this sizewhich 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 tothe table that guide us. You start
with the patient. That's our truenorth, right, So we have patients
on our board of directors, wehave patient advisory boards. Every decision that
we make, we want to knowhow it impacts the patients, what a
patients think, how do they feel? So having them as the north star
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the true guide of what we dois important in every aspect of our operation.
Number Two, that Scientific Advisory Boardthat you mentioned, you know,
bringing together the most brilliant scientists notonly for EP, not only for dermatology,
but across multiple different sectors and industryas well. They can vet the
science right, they can help usunderstand not only we're the best investments with
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the highest impact that serve the patients, but are they cyentergistic things that we're
already doing. Do they complement thingsthat 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 fundedpreviously? Then the third is really that
medical community, right getting researchers together, whether they've worked an EB before or
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we're trying to draw them into ourfield, to understand that hey, we've
got funding available, we've got resourcesavailable, we've got a motivated group of
patients, we've got a data setas a starting point that can provide you
information to put speed into your understandingof this disease and your discovery and this
disease, so you know, buthaving those three groups alone doesn't do you
much good. So finding opportunities tobring those groups together where everybody can hear
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the unique person's perspective. And sometimesthat's literally sitting in a room with everybody
at the table, so everybody canbe 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 fun researchers,what do you think about what our patients
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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 theend of that, if we can align
incentives of all those groups, everybodywants the same thing. We all want
treatments, We all eventually want acure. So that's a big part of
how we run our operation as inclusionof those diverse array of opinions and thoughts
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and wants and desires. Michael,it's really clear than in the six years
you've been very sustainable. What aboutgrowth? I know you're always looking to
the future. What's the future looklike. Well, the future looks like
first and foremost, more treatments forthis disease, for every subtype of this
disease. The future beyond that lookslike a cure. You know, we
are funding research now that by medicaldefinition is definitive and curative, which you
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know, we can all talk aboutit, right, but when the academics
and doctors and researchers start using wordslike definitive and curative, that motivates us,
that fires us up, That givesus an endgame to run to.
So and beyond that, what we'verealized 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 arare disease, almost ten percent of the
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planet is affected by a rare disease, yet ninety five percent don't have a
single FDA approved treatment. So we'vebeen able to cross over into that five
percent threshold. We want to takewhat we've learned and help other rare disease
organizations, help other families that battlethis. Right, you learn more from
your mistakes, and we've made plentyof them, but along the way,
that's given us a roadmap, ablueprint for a cure, if you will,
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and we want to make sure thatthat can benefit others working in this
space. Michael, I want toleave a couple last words for you and
give you the platform. And we'vebeen educated and we're once again we're going
to have a website to everybody andhow you can get involved. But that
really is the big thing about gettinginvolved. And there's a lot of different
things on the website you can gothrough, but if you could just maybe
hnd on some of the bullet pointsabout getting involved in what people that are
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listening to this interview today, whatcan they do well? First of all,
ww dot eb research Org. Youcan learn all about our mission.
We always have the highest standards fortransparency. 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 andour vision. You know what you're
doing here, Dennis is letting usshare our mission on a platform to all
(22:15):
the listeners that you have, anybodythat's willing to share the story and talk
to folks about it. It's thebiggest help. Whether you you know,
tell ten friends or you go ona giant podcast where millions of people can
hear. It is a massive help. Right. And number three, I
think really trying to figure out youknow, we like to say we want
to put the fund in fundraising andphilanthropy. Right, what do you like
(22:36):
to do? Do you like music? Great, we do concerts. Do
you like sports? Great? Wedo 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 andcontinue to spread the mission. Michael,
if you want to leave, maybejust one takeaway and I know it's top,
(22:56):
but if there was one takeaway youwant 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 toparaphrase this, but Muhammad Ali said something
to the effect of service is therent that we pay for our time here
on earth. And you know I'vebeen rewarded in my life and I know
you as well, Dennis, becausewe've chatted about this. To live a
(23:18):
life of purpose, you know,feeling that my life is in service to
others, that my hours, mytalents, my skills could be used to
benefit somebody on this planet that reallydeserves to benefit from any skills or resources
any of us have. So onebig takeaway, whether you get involved with
EVRP or another organization, I wouldchallenge anybody that's listening, figure out what
your gift to this world is,what your skill is, what your purpose,
(23:41):
and figure out a way that youcan give that to others, because
there's certainly no greater reward. Wellsaid, and I agree, let's give
that website one more time. Michael, ww dot ebresearch dot org. Well,
listen, man. In the shorttime we got to know each other,
I can't tell you how much Iappreciate your valuable time. But you're
making a difference out there, andthat's all you can ask when we get
up, try and make a differenceout there. So you and your team
(24:02):
are doing that with the researchers,the doctors and helping out families and children.
Michael, it's absolutely extraordinary to talkto you. Listen, continue success
and we really appreciate you joining uson CEOs. You should know. Thank
you so much. Dennis. It'san incredible story. It's an incredible background
and an incredible mission. I hopeyou enjoyed hearing how Michael han Is set
out to transform the world of childhooddisease. Hope you learned something or were
(24:26):
inspired to do something in your ownway. Until next time, thanks for
listening to CEOs. You should knowPhoenix on your free iHeartRadio app.
Michael Hunt is the CEO of EBResearch Partnership. His mission is to find
a cure for a painful and sometimesfatal childhood disease called EB. What sent
them on this path to make lifebetter for thousands of people every year?
It's an incredible story of how someone'searly adult experiences can influence them and the
(00:22):
rest of the world for the restof their life. Here's our powerful conversation
with the CEO of EB Research PartnershipGroup, Michael Hunt. My origin story
started in the Flint Hills of Kansas. I grew up on a cattle ranch
at a rural area and just areal lovely way to grow up. Incredibly
proud of where I'm from and theway I grew up. I think when
(00:44):
you grow up in a small town, when you grow up on a ranch
and a farm, teaches you afew things. But number one the strength
and community. Right, You reallygot to rely on your neighbor. You
need your neighbor to accomplish the thingsthat you set out to accomplish. Number
two, you know there there's justa work ethic of hard work, right.
You get up when the sun comesup, and you stop working when
(01:04):
the sun goes down and that wasjust a great lesson to learn as a
youngster, right, just that notonly that the hard work and the time
it takes to do that, butbeing 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 likethat, in a community where you never
(01:26):
get too big for your bridges,so to speak, right, and people
around you help remind you of that. So it was a really lovely way
to grow up. What brought meto the East Coast and really helped 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, becamea very successful entrepreneur. And as a
(01:49):
child, I was always just verycurious, and that led me to be
entrepreneurial in many different ways, whetherit was a farm stand or starting a
business. Was always just curious aboutthe world around me and really rooted in
solving problems. I think led tothat curiosity. So I always would ask
my grandfather, you know, tellme about life. Tell me about business.
Tell me everything you know, goingback as far as I can remember,
(02:10):
when there was a story that healways would come back to, and
he said, I can do that. But what I think life is about
is what this guy named Paul Newmanhas done. And you know, some
of us remember Paul Newman, butlegendary actor, a race car driver,
entrepreneur, and philanthropist. And mygrandfather had the opportunity to work with him
at one point in his career,and he said, here's a guy that
(02:31):
achieved this massive success in many differentareas in his life, but what he's
decided to do with that platform isto turn around and give it back to
other people. And he told meabout a camp that Paul had started in
the woods of Connecticut called the Holein the Wall Gang Camp, named after,
of course, the famous movie ButchCassidy and the Sundance Kid. And
the concept was at its core relativelysimple. Kids that battle serious illness like
(02:55):
cancer, sickle cell HIV like threateningyou knows, 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 ride
horses and climb rock walls, andkids with sickle cell can swim and swimming
(03:15):
pools, and you know, reallythis inclusive environment where you wouldn't even know
it was a medical facility when youwalked around it, but it was a
safe place for children. So assoon as I learned that I could volunteer
at eighteen years old, I gotin my beat up truck from Kansas and
I drove across the country to Connecticut. And that was really a life changing
moment. I guess you could sayit was my origin story. I had
(03:36):
the opportunity to work with fourteen andfifteen year old young people that were born
with HIVAS, 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
old to learn that the world aIs so much bigger than you and b.
(03:57):
You know, these were young peoplethat didn't choose the hand that they
were dealt. They were born withthese diseases, they were born with this
illness. And I realized, ifI'm in a position to use my time
and talents in my life to beable to help these young people that battle
disease. Then I how to dothat. So that really inspired me for
a career in the space. AndI got to work with Paul for almost
(04:18):
ten years in his organization and metamazing families, got to work in hospitals
throughout the Northeast, and really launcheda career under the simple principle that if
you want to meet some of themost resilient, brave, courageous people you've
ever met, meet young people battlingdisease and they can teach you a lot
about courage and bravery in your ownlife. Well that's well said. Thanks
(04:39):
for sharing all that. And italways amazes me Michael in the series that
a book, a person, anevent can change your life so drastically.
It's something you never plan on doingand now you're doing it knocking out of
the park. So we're here totalk about EBE Research partnership. A lot
before we do that, I wantto give a little context to our listeners
about all the things that you didbefore that. I know you talked about
(05:00):
the few things that you were doing, and I also want to talk about
the idea of actually coming up witha 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 industryand I think I can do something pretty
special here. But what did youdo before you started EB research. Yeah,
so my first job was working forPaul Newman at the Whole in the
Wall Gang Camp and I started justhelping families get to the camp. It's
(05:21):
a free resource, so going tosit in hospitals, meeting with social workers,
doctors, nurses, parents. Youknow, you'd imagine if you have
a child that's in the hospital themajority of the year, saying we're going
to send them to a camp bythemselves for a week, I can seem
pretty daunting. So it was certainlya fast lesson right and how to work
with these communities and work in thehealthcare ecosystem right. And the organization was
(05:46):
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
(06:09):
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 Juicy Andthis goes to your point, Dennis,
(06:30):
about you know, people or momentsthat may change the course of your trajectory.
And she had an organization called theMultiple 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 justany patient. She had a degree from
(06:51):
Harvard Business School. She worked inthe pharmaceutical industry, and she received a
diagnosis of cancer that her grandfather hadyou know, decades before, yet nothing
had changed in the landscape. Soshe had this thesis and this hypothesis and
this principle that look, if wewant to accomplish big things like carrying disease,
we got to run this like afortune fifty company. You know,
(07:13):
whether you're a nonprofit medical research hospital, academic medical center, you need a
good business model, right. Andso Kathy became a mentor. I went
to work for her, and shereally inspired me to go get a degree
in business, right, not innonprofit 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 medicalresearch. So I did that, you
(07:34):
know, I went and got abusiness degree, and the whole time I
thought about a simple question, howcan we make and accelerate treatments and cures
for rare diseases? Right? Andpart 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
(07:55):
of the patient community, their families, the doctors and research that work on
the disease, the biotech and pharmacompanies that take these therapeutics to market,
government that sits and gives the ultimatesaying approval. So did a lot of
thinking about this, a lot ofwriting about this, and started coming up
with ideas as something that we callventure philanthropy, right, And what is
(08:16):
venture philanthropy. It's this concept thatas 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 likea venture capitalist was. You fund research
with the ability to app upside ifthat's ever commercialized or successful. The return
on investment becomes return on impact becausethose dollars go back to the foundation to
(08:37):
continue to fund more research until wehave treatments and cures. So there was
a lot of thinking about that andthinking 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 checkedout my LinkedIn and I got that
correct on the mask. So well, listen, we are here to talk
about EB Research Partnership and thanks forthe introduction Michael and the company. And
(09:01):
I'd like to just first ask youand get our listeners acquainted and educated about
what the mission statement is. OfEB Research. Yeah, well, you
imagine, you know, you imaginebeing a parent. You've never heard the
words epidermal lisis blosa before, andthe first time you hear it is when
you walk into a hospital. Youknow, for many of us, the
happiest day of our lives delivering ababy, bringing a child into the world,
(09:24):
and then your child is whisked awayto the nicky emergency room and they
said, your child has this thingcalled epidermal lisis blosa and we call it
EB. For sure, it's notso easy to pronounce. But part of
our mission is to cure this soyou never have to pronounce it again.
So our big, bold, audaciousgoal at EBRP is to cure EB by
the end of this decade and pioneera new innovative business model that can apply
(09:46):
to the four hundred million people onthis planet with a rare disease. So
how did EB Research Partnership start thegroup of those parents. They looked around
at the research landscape. There wasn'ta lot of clinical trials, there wasn't
a lot of reas, there wasn'ta lot of activity in the space.
And they took it upon them tochange that. Right, and you know,
they had some help along the way. We were really lucky to have,
(10:09):
you know, a group of thoseco founders, b Jill and Eddie
Vedder of the band Pearl Jam andJill's childhood friend had a son with the
disease, and so she wanted toreally use their platform and their power to
change this existence. And I've beenin 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. Skinis the largest organ in the body,
(10:33):
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, 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 a monogenicdisease, which means it's caused by
one genetic mutation that we know.So that gives us hope, courage,
(10:56):
optimism to charge forward with endless urgencyto 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 ofbusiness 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.
(11:16):
It's a new way to look atthe world. And we've seen impact when
we started two clinical trials today morethan forty when we started no treatments,
Dennis. We had the first,a very big milestone approved treatment FDA approved
treatment for EB and May of thisyear, and it's a topical gene therapy,
the first ever topical gene therapy that'snot a cure, but it gives
(11:37):
us hope and promise and optimism.And I talked to a mom of a
young person with EB and she saidit best. She said, Look,
this just means that we'll have morekids to cure. And I think that
embodies that this is a big stepin our trajectory, but it's not the
endgame, and it gives us morehope and motivation to push towards that finish
line when not only can we delivera cure for this disease, but hopefully
along the way, lift up manyother organizations that pursue treatments and cures.
(12:00):
For their rare disease. Well,Michael, it's pretty extraordinary in the short
amount of time that you've had withall the researchers and the doctors and the
families and everybody about moving so quicklyand things are moving quickly. You know,
something struck me too in our conversation. I know that you know,
I talked to a lot of nonprofitsout there and a lot of agencies and
a lot of people that do withyou do trying to hopefully cure a disease,
we manage it, whether it's children, young adults, or adults.
(12:22):
It's just amazing how many people likeyou were out there, were so thankful
that there are angels like you andyour 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 andthen you got introduced to Eddie that when
these celebrities are these well well known, famous people have a platform that are
(12:43):
going through something that you and Iwould be going through, but we don't
have that platform, it must reallyhelp you in an extraordinary way. That's
you know, because it's just hardwhen you run an organization, but to
have somebody that has a pulpit,social media and a voice, and Eddie
of course is legend talking about what'sexact then in his mind. I think
it's extraordinary they have this kind ofpartnership and I'm sure you take advantage of
(13:05):
it in all the good ways.Well, Dennis, you hit on a
really key theme there and a keyparallel, 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 Woodwardas a couple, right with they are
a couple, power couple, andyou look at Jill Vedder and Eddi Vedder
(13:26):
as a power couple. And whatthey 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'tbe where we are on the trajectory of
treatments and looking at cures for thisdisease if 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 thosegroups of power couples were never afraid to
(13:50):
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 leaderson the board, they are co
founders. They're not just a voicethat lends their platform to this. They're
actively engaged. You ask either aboutthe state of research and the strategy of
the company, they'll be able tosay right away where we're going, where
(14:11):
we're headed, and why. Soreally fortunate to combine individuals with the platform,
but individuals that do the hard workright and roll up their sleeves and
are on the front lines with therest of the team that's chosen to pursue
that ambitious goal. So, Michael, I like to talk to our leaders
and our CEOs and founders about thetough stuff too. And we always say
that as much as work is beingdone, we're moving closer to cures and
(14:33):
whatever you're trying to solve your solving. But the world doesn't always unicorns and
rainbows all the time when it comesto 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 istime. Time is the greatest asset we
(14:54):
have, right, and it's theone 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 alife threatening, rare disease, time is
a gift that you never forget aboutever. Right. The clock is ticking
and we hold that every day rightas the urgency that we carry to our
(15:15):
jobs. You know, every minutethat a child's in pain that we can
prevent and take away is something thatmotivates and feels us every single day.
If we can give you years backwith your loved one, if we can
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,
(15:35):
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
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
(16:00):
via collaboration and healthcare it can shaveyears off of delivering therapeutics to people that
really deserve it. Right. Andwe look at the new business models,
challenging ourselves, not being comfortable withthe status quo. You know things have
been done this way for a longtime. 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 ofinvesting. Let's start our own companies right
(16:22):
and see how that goes. SoI think having the courage to do the
different thing as a way to givethat biggest asset back as much as we
can. Time becomes a challenge,but also the opportunity. I'll tell you
a quick story, Dennis, totie you know where I'm from and what
we do. There's something that wesay in the Midwest, and we say,
do you know the difference between abuffalo and a cow and a thunderstorm?
(16:44):
And many don't, But the differenceis when a thunderstorm comes across the
plains of Kansas. Cows run theopposite direction. They do the status quo.
That's what they've always done, isa herd. So they follow the
herd, and they think they canoutrun it. But what happens is that
thunderstorm never goes away. It followsyou and follows you around where buffalo do
the exact opposite. They turn andthey run right towards the same thing.
(17:06):
Right, it's going to be messy, it's going to be obstacles, it's
going to be painful, there's goingto be challenges. But by doing that,
you know, they run through itand they get to the other side.
And I think that's the way thatwe view big, bold, audacious
goals like carrying a disease. Right, let's do the hard thing, Let's
get through those obstacles, let's learnalong the way. But our hope and
our ambition and our motivation is toget on the other side, which is
(17:27):
relieving the pain and suffering that thesefamilies go through every minute of every day.
Great saying and great analogy. Appreciateyou sharing that on your gorgeous website
that you have that we'll give atthe end of this interview. But a
lot of are very intelligent listeners havealready found your website, so they're probably
on the right now and it's easyto navigate. But there are a couple
different parts of the nab Bar thatI want to hit on. With research
and get involved. We'll do getinvolved in just a second, because that's
(17:48):
a real big deal here. Butwhen 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 curiousbecause you're running a company here and there's
a lot of tentacles that you've alreadydescribed to what you do. How do
you get to hear what's going onwith families and making a difference. Yeah,
well, you know, when youhave big goals like carrying disease and
(18:11):
you run an organization of this sizewhich 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 tothe table that guide us. You start
with the patient. That's our truenorth, right, So we have patients
on our board of directors, wehave patient advisory boards. Every decision that
we make, we want to knowhow it impacts the patients, what a
patients think, how do they feel? So having them as the north star
(18:34):
the true guide of what we dois important in every aspect of our operation.
Number Two, that Scientific Advisory Boardthat you mentioned, you know,
bringing together the most brilliant scientists notonly for EP, not only for dermatology,
but across multiple different sectors and industryas well. They can vet the
science right, they can help usunderstand not only we're the best investments with
(18:56):
the highest impact that serve the patients, but are they cyentergistic things that we're
already doing. Do they complement thingsthat 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 fundedpreviously? Then the third is really that
medical community, right getting researchers together, whether they've worked an EB before or
(19:17):
we're trying to draw them into ourfield, to understand that hey, we've
got funding available, we've got resourcesavailable, we've got a motivated group of
patients, we've got a data setas a starting point that can provide you
information to put speed into your understandingof this disease and your discovery and this
disease, so you know, buthaving those three groups alone doesn't do you
much good. So finding opportunities tobring those groups together where everybody can hear
(19:41):
the unique person's perspective. And sometimesthat's literally sitting in a room with everybody
at the table, so everybody canbe 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 fun researchers,what do you think about what our patients
(20:02):
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 theend of that, if we can align
incentives of all those groups, everybodywants the same thing. We all want
treatments, We all eventually want acure. So that's a big part of
how we run our operation as inclusionof those diverse array of opinions and thoughts
(20:25):
and wants and desires. Michael,it's really clear than in the six years
you've been very sustainable. What aboutgrowth? I know you're always looking to
the future. What's the future looklike. Well, the future looks like
first and foremost, more treatments forthis disease, for every subtype of this
disease. The future beyond that lookslike a cure. You know, we
are funding research now that by medicaldefinition is definitive and curative, which you
(20:48):
know, we can all talk aboutit, right, but when the academics
and doctors and researchers start using wordslike definitive and curative, that motivates us,
that fires us up, That givesus an endgame to run to.
So and beyond that, what we'verealized 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 arare disease, almost ten percent of the
(21:10):
planet is affected by a rare disease, yet ninety five percent don't have a
single FDA approved treatment. So we'vebeen able to cross over into that five
percent threshold. We want to takewhat we've learned and help other rare disease
organizations, help other families that battlethis. Right, you learn more from
your mistakes, and we've made plentyof them, but along the way,
that's given us a roadmap, ablueprint for a cure, if you will,
(21:32):
and we want to make sure thatthat can benefit others working in this
space. Michael, I want toleave a couple last words for you and
give you the platform. And we'vebeen educated and we're once again we're going
to have a website to everybody andhow you can get involved. But that
really is the big thing about gettinginvolved. And there's a lot of different
things on the website you can gothrough, but if you could just maybe
hnd on some of the bullet pointsabout getting involved in what people that are
(21:53):
listening to this interview today, whatcan they do well? First of all,
ww dot eb research Org. Youcan learn all about our mission.
We always have the highest standards fortransparency. 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 andour vision. You know what you're
doing here, Dennis is letting usshare our mission on a platform to all
(22:15):
the listeners that you have, anybodythat's willing to share the story and talk
to folks about it. It's thebiggest help. Whether you you know,
tell ten friends or you go ona giant podcast where millions of people can
hear. It is a massive help. Right. And number three, I
think really trying to figure out youknow, we like to say we want
to put the fund in fundraising andphilanthropy. Right, what do you like
(22:36):
to do? Do you like music? Great, we do concerts. Do
you like sports? Great? Wedo 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 andcontinue to spread the mission. Michael,
if you want to leave, maybejust one takeaway and I know it's top,
(22:56):
but if there was one takeaway youwant 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 toparaphrase this, but Muhammad Ali said something
to the effect of service is therent that we pay for our time here
on earth. And you know I'vebeen rewarded in my life and I know
you as well, Dennis, becausewe've chatted about this. To live a
(23:18):
life of purpose, you know,feeling that my life is in service to
others, that my hours, mytalents, my skills could be used to
benefit somebody on this planet that reallydeserves to benefit from any skills or resources
any of us have. So onebig takeaway, whether you get involved with
EVRP or another organization, I wouldchallenge anybody that's listening, figure out what
your gift to this world is,what your skill is, what your purpose,
(23:41):
and figure out a way that youcan give that to others, because
there's certainly no greater reward. Wellsaid, and I agree, let's give
that website one more time. Michael, ww dot ebresearch dot org. Well,
listen, man. In the shorttime we got to know each other,
I can't tell you how much Iappreciate your valuable time. But you're
making a difference out there, andthat's all you can ask when we get
up, try and make a differenceout there. So you and your team
(24:02):
are doing that with the researchers,the doctors and helping out families and children.
Michael, it's absolutely extraordinary to talkto you. Listen, continue success
and we really appreciate you joining uson CEOs. You should know. Thank
you so much. Dennis. It'san incredible story. It's an incredible background
and an incredible mission. I hopeyou enjoyed hearing how Michael han Is set
out to transform the world of childhooddisease. Hope you learned something or were
(24:26):
inspired to do something in your ownway. Until next time, thanks for
listening to CEOs. You should knowPhoenix on your free iHeartRadio app.
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