May 22, 2023 • 17 mins
Jason Menzo was appointed CEO for the Foundation Fighting Blindness on July 1, 2022. Prior to this appointment, he spent the previous four years serving as the Foundation’s COO and President, leading the organizations fundraising, finance, operations, marketing and community engagement efforts. The Foundation is the world’s leading organization searching for treatments and cures of blinding retinal degenerative diseases. The Foundation has raised over $891 million since its inception and is currently funding more than 90 research projects globally.
Jason also serves on the management team for the Retinal Degeneration Fund (RD Fund), the venture arm of the Foundation. The RD Fund has nearly $100 million under management and has made investments in 10 portfolio companies to date, all aimed at fueling startup companies in the retinal degeneration space.
Prior to joining the Foundation, Jason was a co-founder and Business Unit Head of Sun Ophthalmics. In this role, he built and led the commercial team, launching the business into the well-known entity it is today.
Prior to his role with Sun Ophthalmics, he was a co-founder of the US business for Nicox SA, where he led the commercial launches of several ophthalmic brands and helped the business successfully exit by acquisition (Valeant Pharmaceuticals, 2014). He has previously held positions of increasing responsibility with Bausch + Lomb, Inspire Pharmaceuticals, and Bayer Healthcare.
Jason also serves on the Board of Directors for Retina International, the leading global umbrella organization for patient-led charities and foundations. He has also served as a member for the Global Council of Advisors and Advocates for Sightlife, a global non-profit seeking to end corneal blindness.
Jason also serves on the management team for the Retinal Degeneration Fund (RD Fund), the venture arm of the Foundation. The RD Fund has nearly $100 million under management and has made investments in 10 portfolio companies to date, all aimed at fueling startup companies in the retinal degeneration space.
Prior to joining the Foundation, Jason was a co-founder and Business Unit Head of Sun Ophthalmics. In this role, he built and led the commercial team, launching the business into the well-known entity it is today.
Prior to his role with Sun Ophthalmics, he was a co-founder of the US business for Nicox SA, where he led the commercial launches of several ophthalmic brands and helped the business successfully exit by acquisition (Valeant Pharmaceuticals, 2014). He has previously held positions of increasing responsibility with Bausch + Lomb, Inspire Pharmaceuticals, and Bayer Healthcare.
Jason also serves on the Board of Directors for Retina International, the leading global umbrella organization for patient-led charities and foundations. He has also served as a member for the Global Council of Advisors and Advocates for Sightlife, a global non-profit seeking to end corneal blindness.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
So I actually grew up in asmall town just north of Detroit. The
town's called Rochester, Michigan. AndI'm the oldest of eight kids. Believe
it or not, in this dayand age, that we could come from
a really big family, hard workingfamily. Mom and dad both super hard
working, really close as siblings,and you know, really some of those
(00:20):
early experiences instilled in all of usthis mindset of doing what we can to
make a positive impact on the world, working hard, and you know,
putting a high priority on the thingsthat are really important in life. You're
in Raleigh, North Carolina right now. How did the journey get you there?
Oh my gosh. My wife willbe the first to tell you that
there was a dozen moves and that'snot an exaggeration, A dozen moves throughout
(00:44):
my career that led us to eventuallybeing here in Raleigh, North Carolina.
We've lived in Indiana, North Carolina, New York, Texas, back to
North Carolina. We've lived in temporaryhousing and apartments, and one point in
time he spent six weeks in ahotel in Rochester, New York. So
yeah, we've been through it all. Sounds like either a military or a
radio family, because I can alsorelate in all the moves. We are
(01:07):
here to talk a lot about theFoundation Fighting Blindness and what you do there,
and I first want to ask aboutthe mission statement before we get into
any kind of capabilities and all thecool things and events and how to donate
and volunteer and the wonderful things thateverybody's doing out there. When it comes
to what you guys do, tellus about the mission statement, Jason,
sure. So, the Foundation FightingBlindness is really the global leader in driving
(01:32):
treatments and cures for blinding retinal diseases. And so what that means is that
we are a very simple machine.We are out in the marketplace all over
the world fundraising and our objective isto turn all those dollars that we raise
into advancements that are happening in institutionsand labs and universities all over the world.
(01:53):
And it's all about not just fundingresearch, really driving that research towards
treatments and cures for people. Andso, you know, we have a
lot that we can talk about interms of how we do that, but
it's always with this mindset of notjust doing research for the sake of doing
research, but really focusing our effortson trying to drive potential treatments and cares.
(02:15):
Jason, if we before we getinto anything that you do and all
the different capabilities and events and theother things that we've used about volunteering and
donating, that are very important.I was taking a look at your resume,
and you've got such an interesting ascensionto the job. You know,
four and a half years almost asCOO, then president CEO for seven months,
and now nine months in your newrole of CEO. We have budding
(02:36):
leaders out there, and I'm surethere's context your ascension and why it was,
But talk about that and how itworked out for you at your nonprofit.
Sure, yeah, and I'm happyto And that's a great question.
My experience really does start going backto those days in Rochester, Michigan.
I went to school at Oakland University, which is a small school in Rochester,
and started in the pharma industry.And my career has taken me from
(03:00):
sales to marketing, to training tomanagement, and really those moves, those
dozen moves were associated with entrepreneurship,and I've been involved in starting a couple
different companies or divisions of large multinationalcompanies, And when I came over to
the foundation, it was really forthe purpose of applying the experiences and learnings
I've had from the for profit industryinto the good work of a non for
(03:23):
profit. And so we run thisorganization and lead this organization from the mindset
of how to be the most efficientand impactful organization we possibly can. I
came over with a really close friendwho actually originally joined five years ago as
the CEO, and I came overas sort of his WindMan and was his
COO and then eventually president for justa couple of months. But part of
(03:46):
what we do, and I knowwe're going to get into our capabilities in
a few minutes, but we actuallyhave a venture fund as part of how
we operate and how we go aboutbringing treatments and cures forward. And associated
with that venture fund she formed.We're invested in a dozen plus companies,
but one of the companies that isat our fund. She moved on to
become the CEO of that company,which then gave me the opportunity to be
(04:09):
elevated to the CEO. And it'sbeen a great experience. I love what
we do. It's a really importantmission obviously, and it gives me a
platform to be able to apply sortof my philosophy on building great capabilities within
the people first and foremost to dogood work. Okay, well, we
have tea those capabilities and there area lot and we should mention when it
(04:30):
comes to the website and we cangive it now. We can give it
at the indus to remind people todo that. And the dot org that
you have and there are many differentcool things on the navbar, but you
and I were discovering at least Idid it in our green room as we
did our pre interview. That withthis website, which is by the way,
gorgeous and easy to navigate with tonsof information out there. If you're
blind or if you're impaired, youcan navigate your way through this website,
(04:55):
can't you, Which I thought wasextraordinary and makes a lot of sense too.
Yeah. Well, one of ourour core values is around accessibility and
equity and those who don't have theability to see with their eyes. It
was important for us, especially ifany organization's critical for an organization like us
to ensure that anyone, regardless ofwho you are, has ability to digest
(05:15):
the content on our website, andso a couple of years ago we completely
redesigned our website from scratch with accessibledesign edit the core, and so if
you're an individual who can't see,but use a screen reader, for example,
you can quickly tab through and navigateour website. If you can see,
it's beautiful and everything's laid out ina very easy to follow even though
(05:36):
there's a ton of information, it'seasily digestible to allay audience. There's actually
the ability to turn on certain accessibilityfeatures right within the website, including high
contrast or making the font size larger, a voiceover or built right into the
website. So it's all by intentionaldesign to make sure that anyone can access
(05:57):
the information on our website. Well, it was really id I'm glad you
do it, and once again thatwebsite fighting Blindness dot Org. We'll give
that at the end again, especiallywhen it comes to volunteering and donations,
which are so important. So wedid tease the capabilities, and there's so
many different things that you do offer, and there's course retinal educations well too
that we'll touch on this a littlebit, but let's talk about some of
the capabilities and what you exactly dothere. Sure, yeah, I mentioned
(06:20):
it a minute ago. We're avery simple machine. You know. We're
out in the marketplace, in thecommunity. We have chapters literally all over
the country. And you know,the first part of what we do is
we raise money, and we're raisingtens of millions of dollars every year.
And then the second thing we do, which is really the mission, is
to take every bit of those resourcesthat we raise and put them to work
(06:43):
to fund the research or to bedirected towards public health and education. And
we're putting again tens of millions ofdollars every year into research and research.
When you hear the word research,I think the mind tends to go to
like white lab coats and a sterilelabs setting, and maybe there's mice running
around or whatever. But really,when we think about research, it's every
(07:04):
facet from discovering what is actually thepathology of some of these conditions that cause
someone to be effected with vision loss, all the way through what we call
translational research, even into clinical research. And when we say clinical research,
that's actually taking treatments that are potentiallycuring disease and testing them in a clinical
(07:27):
setting in people. We work reallyclosely with regulators like the FDA. I
mentioned a few minutes ago. Wehave a venture fund, so we're making
investments in companies that are doing thiswork. If you think of it as
a one stop shop on any possibleaspect, from the very very earliest stage
all the way through hopefully FDA approvalfor future products. We're involved in every
(07:49):
facet including and one thing I willplug in particular, free genetic testing program
where if someone is personally affected witha blinding retinal disease, we will pay
for genetic testing to get a reallyaccurate diagnosis as to what specific condition is
affecting their site loss. And soit's a really complicated machine, but in
(08:11):
one sense it's really simple. Weraise money and then we put that money
to work to try to find andbring forth treatments and cares outstanding. Well,
thank you for sharing all that.And while we're talking about that and
the free test there are local chapters. You're based out of early North Carolina.
But how many states are you inright now? Yep, So we've
got forty one chapters all over thecountry. We're actually contemplating putting our first
(08:31):
chapter in Europe right now, youknow, and even if we don't have
a local chapter in your zip code, for example, we have people literally
spread all over the country, andwe've got the most comprehensive global network of
individuals that are passionate about this mission. Jason, we don't necessarily have to
get into the weeds, but maybeany overall statistics that you can share with
(08:52):
us when it comes to any retinalissues that Americans have right now? What
kind of statistics are we looking atright now? Imagine like everything else,
and numbers are growing out there.They are, you know, when we
think about what we consider the rareinherited retinal diseases, which are conditions like
retinitist pigmentosa as the name of oneof those conditions. There's a dozen or
(09:13):
so of those types of conditions.They affect about two hundred thousand people here
in the US. But we're alsoone of the leaders globally in funding research
for dry age related macular degeneration,which impacts tens of millions of people,
and so it's not necessarily that it'ssuper duper rare conditions that we're focused on.
(09:33):
I bet you nearly everyone who's listeningknows someone who's affected with age related
macular degeneration, and a lot ofthe research that we're funding can bring forth
treatments and curish for that condition inaddition to the more rare ones. Jason,
I always like to ask our leadersabout challenges and success stories, because
there are both and that comes witha job. With that said, in
your industry and as CEO the FoundationFighting Blindness, what kind of challenges are
(09:56):
you facing right now? Yeah,just like everyone, I think in the
marketplace, there's a challenge about gettingpeople's attention. And so every one of
our listeners, everyone who's who's listeningto this right now, can imagine whether
they're personal effective or not. Theycan imagine what would feel like to lose
their sight. I think everyone canclose their eyes for a second and just
imagine what your world would would belike to experience the world through that through
(10:18):
that, you know, through throughoutwithout having sight. And yet despite that,
every minute of every day, peopleare pulled for attention and a million
different directions, and so one ofthe biggest challenges we have is just getting
airtime and getting people to think aboutthe fact that we're able to make a
difference in this one area. Butyou know, five minutes after we have
(10:39):
this conversation, everyone who's listening isgonna get pulled into the next thing.
So one of the challenges that I'mreally cognizant of is getting on people's radar
and then staying on people's radar andkeeping them engaged and making an impact through
our organization. Well, I amvery excited and I'm glad we're here for
you at iHeart. So that's goingto be pretty wonderful. And as a
national CEO, hopefully this is HURLDand of our regions in the United States
(11:01):
so we can get the message out. So how about a success story.
I know that you might not benecessarily close with all the chapters, but
I'm sure there are some shared withyou that said, you know what,
that's a pretty special story. Wemade a difference today, and that's pretty
cool. Yeah, so I'm goingto tell you, I mean, an
incredible story. So, as Imentioned, you know, we're driving treatments
and cures. But that sounds likefuture tense. The fact of the matter
(11:22):
is that we're driving and have driventreatments and cures already, and so you
know, just several just not notthat long, with just a couple of
years ago, the first treatment everfor any inherited condition using gene therapy was
approved from one of the conditions thatwe fund research for, and we actually
funded tens of millions of dollars inresearch that led to the first treatment for
(11:43):
a blinding disease like this. Thetreatment is called bluck Sterna. And I
every day get to talk to peoplewho ultimately were affected by this condition.
They were able to get this treatmentand then ultimately they're able to see and
it happens really really quickly. It'slike miracle. I mean, it is
just insane that in particular some youknow, some of the folks that get
(12:05):
to talk to our kids and thatyou know, Johnny, you know,
for example, is now pitching inhis first Little League game, you know,
and that that is something that hisparents thought was never imaginable if it
were not for the treatment of thisparticular gene therapy. And there's now forty
different treatments that are in clinical trials. So over the next you know,
(12:26):
three or four years, there's goingto be dozens of new treatments for these
conditions. There's a lot more workwe have to do. We're nowhere near
the finish line, But there's reasonfor us to be optimistic as we're seeing
the fruits of our labor in realtime. Well, I imagine, Jason,
that you have your frustrating days,but on those days, with those
kind of stories, that's why Iget up in the morning, and to
make those kind of things happen.That's really extraordinary. So thank you for
(12:48):
sharing that. I did want toask you about the future. And I
know that with your scientists and yourtech teams and all the people that donate
and are a part of what youdo at Foundation Fighting Blindness, what are
we looking at over the next fiveto ten years. I know everything is
getting better and technology is getting better, but what exactly are they looking at
over the next decade or two?Sure? Yeah, I mean I'm super
(13:09):
excited about translating concepts that again originatedinto the lab into clinical trials. And
I mentioned the stat a minute agothat today there are more than forty clinical
trials for different conditions that cause blindnessthat we're involved in. And you know,
just like you would imagine that thoseforty clinical trials are eventually going to
(13:30):
have many of them get across thefinish line, and then there's a whole
crop of nearly one hundred programs thatare just on the cusp of clinical trials
and those eventually will end up inthe clinic as well. And so when
I really think about what the nextfive to ten years looks like, is
many many more treatments that are availablein the market for patients who are affected.
All right, we talked about thewebsite once again. We'll get that
(13:52):
at the end of our interview here. But as I did the nab bar
with stories and resources retinal education,genetic testing, research, local chapters,
there's a big one on the righthand side that's ways to give, and
there are a lot of ways togive. So maybe Jason, just for
our listeners very quickly, you couldgo through that and about the different ways
that you can give and also volunteer. We'd love to hear that. That's
(14:13):
right, Yeah, now that's terrific. Obviously, as a non for profit,
we can only do what we dothanks to the generosity of our donors,
and so there are many ways togive, whether it be just simply
on our website clicking that donate buttonand any amount, whether it be a
dollar or you know, we've gotsome donors that are very generous and give
millions of dollars, which is great, but you can give certainly directly through
(14:35):
the website or we have events allover the country, including Vision Walks,
which raises millions of dollars every singleyear. There's thirty some odd Vision walks
all over the country. We havegalas. We've got certainly the ability to
participate in Facebook challenges and birthday fundraiserson Facebook and on social media, really
any way that you could imagine,including literally just setting in a check,
(14:56):
and so we're not picky and everydollar amount certainly helps outstanding it. As
both Jason and I have mentioned thaton that Nabbar there's local chapters there.
There's a link to that so youcan find out if there's one in your
region and then donate locally. Andeverybody always asked me about this, Jason
and I think this is important,especially in this day and age. If
they find their local chapter one that'sin the region and they donate towards that,
(15:16):
how is their money allocated? Sure, So we are an organization that
everything is under one umbrella, sowe're not a combination of several small organizations
that are sort of loosely stitched together, we are one organizations. Every one
of our chapters flows directly through themost efficient way possible, right through the
(15:37):
Foundation directly. And so you know, at the end of the day,
my aspiration is at eighty cents onthe dollar goes right back towards our missions.
We're about seventy seven percent right now, but we're moving towards eighty percent,
which would be again a model andone of the sort of leading examples
of what an efficient non for profitcould look like in this day and age.
(16:00):
Soon as we put a bone orconversation and for a listener that has
taken in all this great information aboutfoundation fighting blindness, what one takeaway do
you want to leave with to makesure that they know about your nonprofit that
it's just super important that said thisis what we are yep. Yeah,
you know. There are many greatcauses in the marketplace today, and obviously
we're involved in a lot of themjust as a family. What I would
(16:22):
say that really excites me about thisparticular mission is that what we are doing
is actually right on the cusp ofbringing so many treatments and cures forward.
So this is one of those typesof missions that if you want to get
involved in everyone. Whether you're personallyaffected with a visions or site, you
know, site affecting disease, everysingle person can relate to what it would
(16:47):
feel like to lose their site.And so whether you're personally affected or not,
this is one of those areas whereyou could get involved. You can
make a donation, you could volunteer, and you could really see the impact
of your time and treasure. Becausewe are having so much success and bringing
treatments forward, and so we saidit a few minutes ago, within the
next five to ten years, Iimagine there to be dozens of new treatments
(17:07):
for these conditions and anyone who wantsto get involved. If there's one thing
I want you to take away isthat you could literally make a tremendous impact
on people's lives with this mission becauseit's so quick moving, we have momentum
outstanding and well said Jason, allright, let's do that website one more
time for everybody, all right.It is Fighting Blindness dot org and of
course you can find us on Facebook, Instagram, Twitter, LinkedIn and even
(17:30):
TikTok for the time being, andwe also have an email address that you
can send any request for information towhich is info at Fighting Blindness dot org
as well. Jason, I can'ttell you how much I appreciate your time
and you and your team are doingwonderful work. So please give our best
to everybody there in Raleigh, NorthCarolina, and thank you so much for
joining us on naturally CEO. Youshould know, thank you so much. Dennis
So I actually grew up in asmall town just north of Detroit. The
town's called Rochester, Michigan. AndI'm the oldest of eight kids. Believe
it or not, in this dayand age, that we could come from
a really big family, hard workingfamily. Mom and dad both super hard
working, really close as siblings,and you know, really some of those
(00:20):
early experiences instilled in all of usthis mindset of doing what we can to
make a positive impact on the world, working hard, and you know,
putting a high priority on the thingsthat are really important in life. You're
in Raleigh, North Carolina right now. How did the journey get you there?
Oh my gosh. My wife willbe the first to tell you that
there was a dozen moves and that'snot an exaggeration, A dozen moves throughout
(00:44):
my career that led us to eventuallybeing here in Raleigh, North Carolina.
We've lived in Indiana, North Carolina, New York, Texas, back to
North Carolina. We've lived in temporaryhousing and apartments, and one point in
time he spent six weeks in ahotel in Rochester, New York. So
yeah, we've been through it all. Sounds like either a military or a
radio family, because I can alsorelate in all the moves. We are
(01:07):
here to talk a lot about theFoundation Fighting Blindness and what you do there,
and I first want to ask aboutthe mission statement before we get into
any kind of capabilities and all thecool things and events and how to donate
and volunteer and the wonderful things thateverybody's doing out there. When it comes
to what you guys do, tellus about the mission statement, Jason,
sure. So, the Foundation FightingBlindness is really the global leader in driving
(01:32):
treatments and cures for blinding retinal diseases. And so what that means is that
we are a very simple machine.We are out in the marketplace all over
the world fundraising and our objective isto turn all those dollars that we raise
into advancements that are happening in institutionsand labs and universities all over the world.
(01:53):
And it's all about not just fundingresearch, really driving that research towards
treatments and cures for people. Andso, you know, we have a
lot that we can talk about interms of how we do that, but
it's always with this mindset of notjust doing research for the sake of doing
research, but really focusing our effortson trying to drive potential treatments and cares.
(02:15):
Jason, if we before we getinto anything that you do and all
the different capabilities and events and theother things that we've used about volunteering and
donating, that are very important.I was taking a look at your resume,
and you've got such an interesting ascensionto the job. You know,
four and a half years almost asCOO, then president CEO for seven months,
and now nine months in your newrole of CEO. We have budding
(02:36):
leaders out there, and I'm surethere's context your ascension and why it was,
But talk about that and how itworked out for you at your nonprofit.
Sure, yeah, and I'm happyto And that's a great question.
My experience really does start going backto those days in Rochester, Michigan.
I went to school at Oakland University, which is a small school in Rochester,
and started in the pharma industry.And my career has taken me from
(03:00):
sales to marketing, to training tomanagement, and really those moves, those
dozen moves were associated with entrepreneurship,and I've been involved in starting a couple
different companies or divisions of large multinationalcompanies, And when I came over to
the foundation, it was really forthe purpose of applying the experiences and learnings
I've had from the for profit industryinto the good work of a non for
(03:23):
profit. And so we run thisorganization and lead this organization from the mindset
of how to be the most efficientand impactful organization we possibly can. I
came over with a really close friendwho actually originally joined five years ago as
the CEO, and I came overas sort of his WindMan and was his
COO and then eventually president for justa couple of months. But part of
(03:46):
what we do, and I knowwe're going to get into our capabilities in
a few minutes, but we actuallyhave a venture fund as part of how
we operate and how we go aboutbringing treatments and cures forward. And associated
with that venture fund she formed.We're invested in a dozen plus companies,
but one of the companies that isat our fund. She moved on to
become the CEO of that company,which then gave me the opportunity to be
(04:09):
elevated to the CEO. And it'sbeen a great experience. I love what
we do. It's a really importantmission obviously, and it gives me a
platform to be able to apply sortof my philosophy on building great capabilities within
the people first and foremost to dogood work. Okay, well, we
have tea those capabilities and there area lot and we should mention when it
(04:30):
comes to the website and we cangive it now. We can give it
at the indus to remind people todo that. And the dot org that
you have and there are many differentcool things on the navbar, but you
and I were discovering at least Idid it in our green room as we
did our pre interview. That withthis website, which is by the way,
gorgeous and easy to navigate with tonsof information out there. If you're
blind or if you're impaired, youcan navigate your way through this website,
(04:55):
can't you, Which I thought wasextraordinary and makes a lot of sense too.
Yeah. Well, one of ourour core values is around accessibility and
equity and those who don't have theability to see with their eyes. It
was important for us, especially ifany organization's critical for an organization like us
to ensure that anyone, regardless ofwho you are, has ability to digest
(05:15):
the content on our website, andso a couple of years ago we completely
redesigned our website from scratch with accessibledesign edit the core, and so if
you're an individual who can't see,but use a screen reader, for example,
you can quickly tab through and navigateour website. If you can see,
it's beautiful and everything's laid out ina very easy to follow even though
(05:36):
there's a ton of information, it'seasily digestible to allay audience. There's actually
the ability to turn on certain accessibilityfeatures right within the website, including high
contrast or making the font size larger, a voiceover or built right into the
website. So it's all by intentionaldesign to make sure that anyone can access
(05:57):
the information on our website. Well, it was really id I'm glad you
do it, and once again thatwebsite fighting Blindness dot Org. We'll give
that at the end again, especiallywhen it comes to volunteering and donations,
which are so important. So wedid tease the capabilities, and there's so
many different things that you do offer, and there's course retinal educations well too
that we'll touch on this a littlebit, but let's talk about some of
the capabilities and what you exactly dothere. Sure, yeah, I mentioned
(06:20):
it a minute ago. We're avery simple machine. You know. We're
out in the marketplace, in thecommunity. We have chapters literally all over
the country. And you know,the first part of what we do is
we raise money, and we're raisingtens of millions of dollars every year.
And then the second thing we do, which is really the mission, is
to take every bit of those resourcesthat we raise and put them to work
(06:43):
to fund the research or to bedirected towards public health and education. And
we're putting again tens of millions ofdollars every year into research and research.
When you hear the word research,I think the mind tends to go to
like white lab coats and a sterilelabs setting, and maybe there's mice running
around or whatever. But really,when we think about research, it's every
(07:04):
facet from discovering what is actually thepathology of some of these conditions that cause
someone to be effected with vision loss, all the way through what we call
translational research, even into clinical research. And when we say clinical research,
that's actually taking treatments that are potentiallycuring disease and testing them in a clinical
(07:27):
setting in people. We work reallyclosely with regulators like the FDA. I
mentioned a few minutes ago. Wehave a venture fund, so we're making
investments in companies that are doing thiswork. If you think of it as
a one stop shop on any possibleaspect, from the very very earliest stage
all the way through hopefully FDA approvalfor future products. We're involved in every
(07:49):
facet including and one thing I willplug in particular, free genetic testing program
where if someone is personally affected witha blinding retinal disease, we will pay
for genetic testing to get a reallyaccurate diagnosis as to what specific condition is
affecting their site loss. And soit's a really complicated machine, but in
(08:11):
one sense it's really simple. Weraise money and then we put that money
to work to try to find andbring forth treatments and cares outstanding. Well,
thank you for sharing all that.And while we're talking about that and
the free test there are local chapters. You're based out of early North Carolina.
But how many states are you inright now? Yep, So we've
got forty one chapters all over thecountry. We're actually contemplating putting our first
(08:31):
chapter in Europe right now, youknow, and even if we don't have
a local chapter in your zip code, for example, we have people literally
spread all over the country, andwe've got the most comprehensive global network of
individuals that are passionate about this mission. Jason, we don't necessarily have to
get into the weeds, but maybeany overall statistics that you can share with
(08:52):
us when it comes to any retinalissues that Americans have right now? What
kind of statistics are we looking atright now? Imagine like everything else,
and numbers are growing out there.They are, you know, when we
think about what we consider the rareinherited retinal diseases, which are conditions like
retinitist pigmentosa as the name of oneof those conditions. There's a dozen or
(09:13):
so of those types of conditions.They affect about two hundred thousand people here
in the US. But we're alsoone of the leaders globally in funding research
for dry age related macular degeneration,which impacts tens of millions of people,
and so it's not necessarily that it'ssuper duper rare conditions that we're focused on.
(09:33):
I bet you nearly everyone who's listeningknows someone who's affected with age related
macular degeneration, and a lot ofthe research that we're funding can bring forth
treatments and curish for that condition inaddition to the more rare ones. Jason,
I always like to ask our leadersabout challenges and success stories, because
there are both and that comes witha job. With that said, in
your industry and as CEO the FoundationFighting Blindness, what kind of challenges are
(09:56):
you facing right now? Yeah,just like everyone, I think in the
marketplace, there's a challenge about gettingpeople's attention. And so every one of
our listeners, everyone who's who's listeningto this right now, can imagine whether
they're personal effective or not. Theycan imagine what would feel like to lose
their sight. I think everyone canclose their eyes for a second and just
imagine what your world would would belike to experience the world through that through
(10:18):
that, you know, through throughoutwithout having sight. And yet despite that,
every minute of every day, peopleare pulled for attention and a million
different directions, and so one ofthe biggest challenges we have is just getting
airtime and getting people to think aboutthe fact that we're able to make a
difference in this one area. Butyou know, five minutes after we have
(10:39):
this conversation, everyone who's listening isgonna get pulled into the next thing.
So one of the challenges that I'mreally cognizant of is getting on people's radar
and then staying on people's radar andkeeping them engaged and making an impact through
our organization. Well, I amvery excited and I'm glad we're here for
you at iHeart. So that's goingto be pretty wonderful. And as a
national CEO, hopefully this is HURLDand of our regions in the United States
(11:01):
so we can get the message out. So how about a success story.
I know that you might not benecessarily close with all the chapters, but
I'm sure there are some shared withyou that said, you know what,
that's a pretty special story. Wemade a difference today, and that's pretty
cool. Yeah, so I'm goingto tell you, I mean, an
incredible story. So, as Imentioned, you know, we're driving treatments
and cures. But that sounds likefuture tense. The fact of the matter
(11:22):
is that we're driving and have driventreatments and cures already, and so you
know, just several just not notthat long, with just a couple of
years ago, the first treatment everfor any inherited condition using gene therapy was
approved from one of the conditions thatwe fund research for, and we actually
funded tens of millions of dollars inresearch that led to the first treatment for
(11:43):
a blinding disease like this. Thetreatment is called bluck Sterna. And I
every day get to talk to peoplewho ultimately were affected by this condition.
They were able to get this treatmentand then ultimately they're able to see and
it happens really really quickly. It'slike miracle. I mean, it is
just insane that in particular some youknow, some of the folks that get
(12:05):
to talk to our kids and thatyou know, Johnny, you know,
for example, is now pitching inhis first Little League game, you know,
and that that is something that hisparents thought was never imaginable if it
were not for the treatment of thisparticular gene therapy. And there's now forty
different treatments that are in clinical trials. So over the next you know,
(12:26):
three or four years, there's goingto be dozens of new treatments for these
conditions. There's a lot more workwe have to do. We're nowhere near
the finish line, But there's reasonfor us to be optimistic as we're seeing
the fruits of our labor in realtime. Well, I imagine, Jason,
that you have your frustrating days,but on those days, with those
kind of stories, that's why Iget up in the morning, and to
make those kind of things happen.That's really extraordinary. So thank you for
(12:48):
sharing that. I did want toask you about the future. And I
know that with your scientists and yourtech teams and all the people that donate
and are a part of what youdo at Foundation Fighting Blindness, what are
we looking at over the next fiveto ten years. I know everything is
getting better and technology is getting better, but what exactly are they looking at
over the next decade or two?Sure? Yeah, I mean I'm super
(13:09):
excited about translating concepts that again originatedinto the lab into clinical trials. And
I mentioned the stat a minute agothat today there are more than forty clinical
trials for different conditions that cause blindnessthat we're involved in. And you know,
just like you would imagine that thoseforty clinical trials are eventually going to
(13:30):
have many of them get across thefinish line, and then there's a whole
crop of nearly one hundred programs thatare just on the cusp of clinical trials
and those eventually will end up inthe clinic as well. And so when
I really think about what the nextfive to ten years looks like, is
many many more treatments that are availablein the market for patients who are affected.
All right, we talked about thewebsite once again. We'll get that
(13:52):
at the end of our interview here. But as I did the nab bar
with stories and resources retinal education,genetic testing, research, local chapters,
there's a big one on the righthand side that's ways to give, and
there are a lot of ways togive. So maybe Jason, just for
our listeners very quickly, you couldgo through that and about the different ways
that you can give and also volunteer. We'd love to hear that. That's
(14:13):
right, Yeah, now that's terrific. Obviously, as a non for profit,
we can only do what we dothanks to the generosity of our donors,
and so there are many ways togive, whether it be just simply
on our website clicking that donate buttonand any amount, whether it be a
dollar or you know, we've gotsome donors that are very generous and give
millions of dollars, which is great, but you can give certainly directly through
(14:35):
the website or we have events allover the country, including Vision Walks,
which raises millions of dollars every singleyear. There's thirty some odd Vision walks
all over the country. We havegalas. We've got certainly the ability to
participate in Facebook challenges and birthday fundraiserson Facebook and on social media, really
any way that you could imagine,including literally just setting in a check,
(14:56):
and so we're not picky and everydollar amount certainly helps outstanding it. As
both Jason and I have mentioned thaton that Nabbar there's local chapters there.
There's a link to that so youcan find out if there's one in your
region and then donate locally. Andeverybody always asked me about this, Jason
and I think this is important,especially in this day and age. If
they find their local chapter one that'sin the region and they donate towards that,
(15:16):
how is their money allocated? Sure, So we are an organization that
everything is under one umbrella, sowe're not a combination of several small organizations
that are sort of loosely stitched together, we are one organizations. Every one
of our chapters flows directly through themost efficient way possible, right through the
(15:37):
Foundation directly. And so you know, at the end of the day,
my aspiration is at eighty cents onthe dollar goes right back towards our missions.
We're about seventy seven percent right now, but we're moving towards eighty percent,
which would be again a model andone of the sort of leading examples
of what an efficient non for profitcould look like in this day and age.
(16:00):
Soon as we put a bone orconversation and for a listener that has
taken in all this great information aboutfoundation fighting blindness, what one takeaway do
you want to leave with to makesure that they know about your nonprofit that
it's just super important that said thisis what we are yep. Yeah,
you know. There are many greatcauses in the marketplace today, and obviously
we're involved in a lot of themjust as a family. What I would
(16:22):
say that really excites me about thisparticular mission is that what we are doing
is actually right on the cusp ofbringing so many treatments and cures forward.
So this is one of those typesof missions that if you want to get
involved in everyone. Whether you're personallyaffected with a visions or site, you
know, site affecting disease, everysingle person can relate to what it would
(16:47):
feel like to lose their site.And so whether you're personally affected or not,
this is one of those areas whereyou could get involved. You can
make a donation, you could volunteer, and you could really see the impact
of your time and treasure. Becausewe are having so much success and bringing
treatments forward, and so we saidit a few minutes ago, within the
next five to ten years, Iimagine there to be dozens of new treatments
(17:07):
for these conditions and anyone who wantsto get involved. If there's one thing
I want you to take away isthat you could literally make a tremendous impact
on people's lives with this mission becauseit's so quick moving, we have momentum
outstanding and well said Jason, allright, let's do that website one more
time for everybody, all right.It is Fighting Blindness dot org and of
course you can find us on Facebook, Instagram, Twitter, LinkedIn and even
(17:30):
TikTok for the time being, andwe also have an email address that you
can send any request for information towhich is info at Fighting Blindness dot org
as well. Jason, I can'ttell you how much I appreciate your time
and you and your team are doingwonderful work. So please give our best
to everybody there in Raleigh, NorthCarolina, and thank you so much for
joining us on naturally CEO. Youshould know, thank you so much. Dennis
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