August 5, 2025 • 39 mins
Episode transcript and more information at: https://bit.ly/AIBD180
Grassroots organizations are an important part of the IBD landscape, helping fill in the many gaps in our underserved community. Amber talks with Angela Clark, president and CEO of Propel a Cure, a grassroots nonprofit that funds research projects looking for the causes of Crohn's disease. They discuss the challenges of finding cures for IBD and the importance of supporting innovative, early-stage research. Angela explains their grant selection process, highlights current research they fund, and shares how the organization communicates complex science to the IBD community.
Topics in this episode include:
- Origins and mission of Propel a Cure, a nonprofit organization focused on Crohn's disease research.
- Angela Clark's personal connection to Crohn's disease and her role in Propel a Cure.
- The grassroots nature of Propel a Cure and its all-volunteer structure.
- Challenges and rewards of running a nonprofit organization dedicated to IBD research.
- Funding strategies for innovative research projects related to Crohn's disease.
- Importance of raising awareness and combating misconceptions about Crohn's disease.
- Overview of current research projects funded by Propel a Cure and their scientific approaches.
- The role of a scientific advisory board in evaluating research proposals.
- Communication strategies for making complex scientific research accessible to the IBD community.
- Future goals for expanding funding capacity and building partnerships within the IBD space.
More information:
- Propel a Cure Videos (interviews with leading IBD researchers)
Find Propel a Cure at:
- Web: PropelACure.org
- Twitter: @propelacure
- Instagram: @propelacure
- Facebook: @propelacure
- LinkedIn: @propel-a-cure-for-crohn-s-disease
- YouTube: @propelacure
Find Amber J Tresca at:
- Verywell: Verywell Health
- Facebook: @aboutIBD
- Twitter: @aboutIBD
-
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
I'm Amber Tresca and this isabout IBD.
I'm a medical writer and patienteducator who lives with a J
pouch due to ulcerative colitis.It's my mission to educate people
living with Crohn's disease orulcerative colitis about their
disease, and to bring awarenessto the patient journey.
Scientific research is importantto advance our understanding of
all diseases and conditions,but it's really critical in
(00:27):
inflammatory bowel disease becausethese conditions are so complicated.
We now know that there may behundreds of genes involved in
the development of Crohn'sdisease and ulcerative colitis,
but not everyone who has thegenes will go on to have IBD.
That's why it runs in families.But most people with an IBD
don't have a family member whoalso lives with the condition.
(00:50):
There's an environmental component,meaning that there's one or more
factors that starts the processof inflammation.
Like I said, it's complicated.My guest is Angela Clarke, the CEO
and president of Propel a Cure.Propel a cure is a grassroots
nonprofit that funds research intothe causes of Crohn's disease.
(01:10):
Angela tells us more about PropellingCures mission, why they are so
passionate about research, and whatkinds of studies they fund in order
to get us closer to finding cures.Originally from Georgia,
Angela received her bachelor's inpolitical science from Maryville
College and her master's degree inWestern European Government and
(01:34):
politics from the London School ofEconomics and Political Science.
In the past, she enjoyed a careerin the federal government and also
worked in local radio and television.Most recently,
she served as a marketingdirector at a private school.
She and her husband have a sonand a daughter.
Angela became involved in propela cure after the Crohn's
(01:57):
diagnosis of a relative.and she is passionate about
supporting innovative researchthat pushes beyond the current
therapy landscape to ultimatelylead us to a cure.
Angela Clarke, welcome to about IBD.Thank you so much for having me,
Amber. I'm so excited. So am I.I cannot wait to learn more about
(02:19):
your organization, propel a cure,of which you are the president
and CEO. Gosh, that's a lot.Um, so I wonder if you would
start by telling me a little bitmore about how you first got
involved with Propel Cure. Okay.Well, I have just been president
and CEO for just a few months now,but I originally got involved
(02:41):
after the diagnosis of an adultchild that was 5 or 6 years ago.
It was a very sudden onset, uh,aggressive onset of Crohn's disease.
And, uh, we're talking aboutalmost every complication you
can think of right away.Three surgeries within the first
nine months.So needless to say,
it was a scary time.A worrying time of helpless feeling
(03:05):
time. And as a lot of people do.I started getting on the internet,
looking up everything I could thinkof. Trying to learn what I could.
And in the course of doing that,I connected with the wonderful
lady named Annabel Hall,who also had a child, an adult child
who had been diagnosed with Crohn's.She had started a nonprofit at
(03:28):
501 C3 called Propel A Cure forCrohn's Disease.
The message and the mission of thisorganization was so intriguing and
inspiring to me that I couldn'tsay no when she asked me to help,
so I joined the board at that time,and that's how I got involved.
I never really thought I would beheavily involved in a nonprofit,
much less a leading one.And like I said,
(03:50):
that's a fairly new thing.Annabel retired after putting in a
good 6 or 7 years of doing so much.And that's that's how I'm where
I am today with it. Mhm.Amazing. Um, yeah.
I've talked to so many people whothat's that's kind of the journey.
Right.Is that it's not something you
ever thought of until it affectedyou and your family so deeply.
(04:15):
And then it becomes something thatyou really get called to do in a,
in a passionate way.Um, but I'm wondering, though,
also because ProPublica is it'sa grassroots nonprofit,
and that's I know from personalexperience these things are not
easy to get started, get going.Uh, how did everything begin?
(04:39):
Can you tell me a little bitabout the history? Okay.
Uh, Annabelle, who was our founder,who I just mentioned.
She started that, and she.This lady, when her son was
diagnosed, she also started trying tolearn everything she could to the
point of reading medical journals,trying to educate herself.
(05:00):
And actually what I consider tobe very gutsy,
reaching out to researchers inthe field with no background.
She was very frustrated thatthere there isn't a cure for
Crohn's disease in other Ides.And so she started talking to
researchers, contacting them andseeing a real need,
finding out that there are lots ofpassionate scientists with bold ideas
(05:23):
who just don't have the funding.And so she decided she was going
to step in and try to fulfill thatneed by raising funds for them.
So that's that's how basicallythe organization started.
And as time went on,she added to our board,
we are all Crohn's patients orfamily members of Crohn's patients.
So that's what makes us uniqueas well.
(05:46):
So that's that's how we got offthe ground.
It's so interesting talking toresearchers.
I think one of my favoritequestions ever to ask of
researchers in particular is whatwould your dream study look like?
Like if you had any amount offunding, what would you do?
(06:08):
And I'll tell you,people light up like Christmas trees
when you ask them that question.So I imagine it's a gutsy thing
to do.But I also imagine that it was
really a wonderful experience forresearchers to hear from someone so
passionate and to get those kindsof questions and to have that,
(06:31):
to have that point of contactthere from a real family that
was dealing with real issuesrelated to Crohn's disease.
I agree, because it's not oftenthat researchers have many
opportunities to come in contactwith with the people or families
that they're trying to help.And one thing I meant to mention is
that we're specifically targetedon the underlying causes and
(06:52):
players in Crohn's disease, which,you know, there are a lot of studies,
a lot of research going on, but weare specifically focused on that.
And that was part of our our mission.And that's what she,
Anabel started out to do.And that's where we've stayed
focused. Right, right.And you told me or I read it,
I can't remember maybe both thatProPublica is an all volunteer
(07:17):
organization. That is difficult.Uh, can you tell me,
how do you make that all work?Do you have any magic?
Well, I'll bring up that word again.I think I've already mentioned a
couple of times that passion.I think that stems from actually
having the experience with thedisease yourself that keeps it going.
(07:37):
Uh, we want cures as much forourselves and our loved ones as
our supporters do.So that that really ties it all in.
Uh, our team is small,but we all understand each other.
We're each other's.We support each other beyond
just our nonprofit, you know,in personal dealings as well,
what we're dealing with on a day today basis or month to month basis.
(08:00):
So we do talk and and keep in touch.And I do consider them all my
friends and likewise hopefully.But I think also the passion
that we feel from supporters ofPropeller Corps that that have
so much hope and they'veexpressed so much gratitude and,
and they're counting on us and wewe take that very, very seriously.
(08:21):
I think also with a small allvolunteer nonprofit,
you really have to know yourlimits because you don't have the
resources of the bigger guns.So we there's so many things
we'd like to do that, you know,we have a million ideas, but we have
to say to ourselves, wait, not now.Maybe next year or some other point.
And I've been told by team members,yeah, that's great.
(08:42):
But, you know,we're already doing x, y, z.
So you have to know your limitations.And that's hard sometimes because
there's so many needs I think.And I think also another thing
is you have to be flexible,especially in a small organization,
which is also a strength.We're small enough that we are
flexible, so we wait.We may have certain roles,
but we are able to step outsidethem and pitch in to other things.
(09:05):
And that's, that's that's a goodthing. So that helps us as well.
Yeah for sure.And the fact that it's also like, uh,
kind of a support group for you all,I mean, that's helpful too, is to
have those personal connections.And that must also fuel that passion
and help you keep going because, yes,you're supporting the community,
(09:26):
but that can sometimes feel like,oh, it's over here.
You know, it's it's like thecommunity, um, but you have a real
community in front of you all ofthe time that you're actually
working with and supporting.So it's just so that's how
that's the magic.That's how you're making it work,
right? A big part of it.Yeah, yeah. Yeah.
(09:46):
So let's talk for a minute aboutthe mission.
You have mentioned a fewdifferent things.
Uh, but how is propellor cureaddressing problems that are
faced by the IBD community? Okay.Well, our mission again is to
support scientists investigatingthe underlying causes and
(10:06):
players in Crohn's disease tolay the path to a cure.
And what we're trying to do is,is shake things up,
shake up the status quo.Um, and I'll say again, we're
grateful for the therapies that areout there. Thank God we have them.
We're either on them or havefamily members who are.
But we're trying to get beyondthat because those those address
(10:30):
the symptoms.But we're trying to get to the
causes. Why is Crohn's happening?You know what goes wrong in the body.
And it's such a multifactorialdisease.
There's still so much we don't know.We're making progress.
But, you know,I think we have to acknowledge
that the medications currently outthere don't work for everyone.
There's a significant subset ofpatients who are Or refractory
(10:52):
or they don't.Um, last, uh, and they have to
jump from biologic to biologic.So we're really trying to go beyond
that. Uh, get some other options.And I think, you know, one of the
things we're trying to do is say,you know, we see a lot of studies
and that are fascinating.And but we never hear any follow up
(11:16):
or we see studies that, that are,you know, kind of retread some
of the same ground we've seen.So we're trying to search out
new avenues,scientists who have these bold ideas.
So that's that's sort of themessage we're trying to bring.
Let's let's get beyond what we have.Let's get some options.
Wouldn't it be great to have amedication that we're not on for
(11:36):
life, or something that we take whenwe have a problem and just when we
have a problem with our disease?So. Right.
Um, and who wouldn't want that?So those are some of the,
some of those the projects thatwe're sponsoring are actually
looking at some things like that.So that's that gets us very excited.
I think another thing we're trying toaddress is that I know we've made
(11:58):
some progress, but there's still somany people out there who don't know
the series of Crohn's disease whostill think it's a bathroom disease.
And so our organization and ourmessaging, we try to, you know,
we relay the statistics and wethink that's important because
it needs to be taken seriously.And I think that in turn helps the
(12:19):
funding and helps get the messageout to the population at large.
Right, absolutely.I am 100% on board with that,
and I'm chuckling a little bitat the idea of not the idea,
but at the studies that areinteresting and are great work.
(12:39):
But then they make a big splash, youhear about them and then what next?
You know, you're not hearing about.And it probably has to do with
maybe funding.And mean, there's so many studies.
I mean, thousands and thousandsof studies every year that and
it's hard to keep track of.And I know we'll probably talk
about that a little later.But there is a sense of hope
(13:00):
that's created.And then you're kind of saying
what's next?And and that's what we,
you know, we hear from oursupporters about that too.
And, and, uh,and I think it makes it hard to know
sometimes which ones that you know,what's really there, what's where.
When is there something really there?And sometimes we won't know for years
if there's something there becauseit's going to take a lot more work.
Almost every study says morefollow up needed to know. Yeah.
(13:24):
Yes, yes. When?When I was working, uh,
for a medical publishing companyand we produced journals for,
uh, health care providers,physicians mostly,
that was something that we excisedfrom everything that we wrote.
Don't ever say more study. Is needed.Because that's that's a given.
(13:47):
So you don't actually need towaste ink on saying that. So, um.
Yeah, totally, totally true.Um, with that and what I'm seeing now
too, uh, being in the community,I was diagnosed at 16. I'm 52 now.
And being in the professional, uh,writing and, uh, medical publishing
community for more than 20 years,things are coming around again.
(14:11):
So I see people that or I hear frompeople who will ask me about some
piece of research, some modality.And I was like, oh, yeah, there's
research on this 20 years back.And for whatever reason,
it just hasn't gone anywhere.Maybe the pilot study was great,
but then they did a bigrandomized study and then that
(14:34):
didn't pan out anything.And then the idea comes back
around again 20 years later,maybe with a different approach
or a different way to research itor look at the data or whatever.
And so, so so for me,sometimes I'm like, yeah, yeah,
I have heard of that before.Yeah. And I think yeah.
And I think in the researchworld there's so much going on.
And researchers tend to be focused ontheir niche, rightfully so, that it's
(14:56):
hard to hard to keep track of what's,what's going on and what's been
studied and or how it's been studied.And I know there they try their best
and it's, it's it's a hard field todo research in. Oh yeah. Totally.
It's hard for anybody to keep upwith everything that's going on.
I try to remember that that's agood thing, because there were a
(15:17):
lot of years where it didn'tseem like much was moving.
So things are moving along now.And as I always say, kids,
get off my lawn.Um, having been in this space for,
uh, you know, a hot minute.Um, yeah. So.
All right, a big thing with researchis fundraising. I mean, that's huge.
And for non-profits,it takes up a lot of time and energy.
(15:41):
It is also,I find it emotionally challenging.
How does propel a cure approachtheir fundraising efforts.
Well,that's our our biggest focus. And.
Because we're small,there's an added benefit,
another added benefit to that.And that is we are virtual.
We are all volunteer so thatmore than 97% of funds go
(16:03):
directly to research.Our overhead is is almost negligible.
So that's that's a good thing.That's one help in our approach.
We tend to cure.We have found about $100,000,
give or less,to be the sweet spot for the type of
preclinical research we're funding.They tend to be about two year
studies, and I should havetalked a little more about that.
(16:23):
But these are studies that takeplace in the lab before things
ever go to trial.And in this stage, scientists are
trying to prove a hypothesis.And what they are able to do with the
studies we fund are then take them tobigger funding entities like the
government, sources like the NIH,like private investors and say,
(16:48):
this is what we have found.Look at this data.
So we give them the ability toget that data.
And that's that's how that's whatwe're trying to raise money for.
And these tend to be novel.Again innovative studies that have
would have a hard time gettingoff the ground. Otherwise.
They do have a hard time.And scientific research is hard to
fund anyway in the best of times.So we see ourselves as sort of
(17:13):
bridging that critical gap there.We raised most of our money from
family, patients, friends,and mostly online because we're
a virtual organization,so we don't have in-person events.
So we really tried to get our messageout, which we think really resonates,
hopefully with the community andas many ways as we can and as many
(17:34):
different channels as we can is thatwe're working toward a cure. We work.
We're working for those therapeuticadvances that lead us to a cure.
So that's that's how we tend toapproach it.
And the other thing we do is,I think with any kind of funding
for research, for any disease,it's it's a little tougher in that
you don't have this immediate result.You don't have these families
(17:58):
that are being fed or thesepatients that are being supported
with their needs right now.It's this stuff takes years.
And it's, you know,it doesn't always pan out.
There's there's a risk involvedwith research.
So what we try to do is be veryclear, by requiring those labs for
sponsoring, to provide quarterlysummaries of what's happened in
(18:19):
the lab over the last quarter.And that tells our donors what,
what their money is going toward.Now, not everybody may read every
report or all of every report.Some of it's it's kind of jargon, uh,
describing what they did in the lab.But but a lot of supporters are
very interested to read that andhang on every word because it's,
it's it affects them and itaffects their future.
(18:41):
So we, we try to do that as well.And so that we feel that helps
as well in the fundraising.Coming up,
Angela tells us about the excitingresearch propelling her is funding.
(19:09):
Angela,propel a Cure funds these projects.
I imagine that it is extremelydifficult to choose which ones to
fund. So how do you go about that?We have a process that has evolved
over time that has worked very well,that we're now using,
and when we have the funds,we tend to raise funds as we go.
Until now, we're at the stage wherewe have partially funded a project,
(19:33):
which was a big step for us, andtaking that leap of faith to raise
the rest of it for a two year study.They have probably year, half of
it funded, and we're confidentwe'll get to that two year mark.
But what we do is we have ascientific advisory board that's
composed of for researchers andGI clinicians with a lot of
experience in IBD.They've been involved in studies
themselves, so we rely on theirexpertise to help us choose.
(19:57):
So at this point, we do a when itis time to fund another study,
we do a grant competition.So we try to publicize it as
widely as we can through our emaillists social media referral.
However,we can bring it to the attention
of those involved in IBD research.And we we encourage anyone in
(20:18):
the world to apply.Doesn't matter what country you're
in, if you're a scientist, itdoesn't matter if you're in private
industry or an academic institution.Doesn't matter if you're early
career or late stage,if you've been at it for years.
We just want the projects thatwe think will or hope will help
our patients most.And so we put out publicity
(20:39):
about this.We invite them to submit proposals.
And again we're looking forspecifically for proposals that
will be impactful, innovative.Lay the groundwork for a cure.
Hopefully.And so those are those are the kinds
of proposals we're trying to attract.Once we get those,
we let our scientific advisory boardgo through those. They have a rubric.
(21:01):
It's based on NIH criteria.They are looking at things like
what does it bring that's new tothe field.
What if you have this kind ofchallenge?
What how do you pivot from that?Do you have the infrastructure
that required it would berequired for this type of study.
So they're looking at all thesekinds of details and they score
(21:23):
the proposals that we receive.And sometimes we go back.
Sometimes they have a question or aconcern that we've gone back to the
individual or lab submitting theseproposals that they then answer.
We've had some been asked to rewritetheir proposals for their projects.
So it's a very rigorous process.And once we have the scores and
(21:44):
the feedback of our scientificadvisory board, we then talk
about it as a group, go by theirguidance and make that decision.
And I'm happy to say with thelast competition we did that we
chose a winner.And that grant that 100,000
grant was awarded.But we later, as we were able to
raise more funds, we were able tofund a couple of more of them.
(22:08):
So that was very rewarding becausethere were there were more there
were quite a few that were veryinteresting and very worthwhile.
So that was that was good to beable to do that.
It sounds difficult, but also kind ofgood problems to have, you know.
Yeah, I'm sure there's funding. Yeah.And that there's so many, uh, people,
(22:28):
so many passionate researchersout there that are submitting
these proposals and, you know,just excited to do the work.
And we find that the ones who dotend to I mean, they are the more
innovative researchers, the onesthat and are so passionate about the
type of proposals that we receive.So they're on the same page as
(22:49):
we are and that all our patientsupporters are, and they're
working hard and innovative waysto to figure out these problems.
And outside the box. Right. Yeah.So do you have any highlights?
Can you share some research with us?Something that Propeller Kerr has
sponsored that you found to beparticularly compelling? I'd love to.
(23:13):
Right now we have three projectsunderway that we're sponsoring.
And they all come at the diseasefrom very different angles.
Uh, the first one is Therapeutics,which is a Boston area biotech
company, and they are looking at themucosal innate immune system, the
immune system that you're born withand what they see to be a deficiency
(23:36):
in the molecules associated withthat in Crohn's patients.
So they're seeing much less ofthis molecule in Crohn's
patients and a higher normallevel in healthy patients.
So they've really been lookingat that.
So far their hypothesis has beenvalidated in the laboratory.
And they just started testing atherapeutic compound in mice that is
(24:00):
lowering the inflammation in themice have actually been transplanted
with Crohn's disease patient tissue.So it's it's that's been a real
advance.We are also sponsoring a project.
And these next two I'm going tomention are newer ones.
But we're also sponsoring aproject at the Woolston Lab at
Northeastern University in Boston.And it's actually there,
(24:23):
a chemical engineering department atthe Woolston Lab that is looking
at the role of hydrogen sulfideand intestinal inflammation.
Hydrogen sulfide is a gut foundin the microbe.
And it's it's very been verypoorly understood.
It's been studied a little not a lot.And so they're trying to, uh,
see what role it may play inCrohn's disease.
(24:46):
Higher levels of hydrogensulfide can occur.
Hand in hand with that increasedinflammation.
So they have actually engineeredtheir own microbes,
synthetic microbes,to try to manipulate the levels
of hydrogen sulfide in the body.So they have achieved that.
Uh, they found out they can theycan increase, decrease,
(25:06):
sort of manipulate that microbe.And so now they're going to start
looking at what effect it mayhave on the pathology of Crohn's.
And by the way, they are lookingat trying to develop an oral non
immunosuppressive therapeutic aspart of that research,
as is their therapeutics.The other lab I mentioned that of
course they're testing that compound,that compound right now in mice.
(25:29):
So that that is what they'relooking toward. Mhm.
And the third project we'responsoring right now is at the
Ghosh lab at UC San Diego,and they are looking at the
partnership between two moleculescalled not, to which a lot of
people may have heard of and give,which is an acronym that stands
(25:50):
for a much longer name,but they are seeing an impaired
partnership between these twomolecules in Crohn's patients.
So it's essentially broken.They've detected what they describe
as sort of a broken piece of aparticular type of nod to molecule.
And they're trying to and theseare this partnership is involved
in inflammation and bacterialclearance in healthy patients.
(26:14):
So something goes wrong inCrohn's patients with this.
And they're trying to look at how howcan we repair this relationship.
What is what is wrong with thispartnership.
And how can we make it rightagain so that it can improve
lives of Crohn's patients?So that's what they're looking at as
well. And that one just got started.So those are just several
examples that we're uh,we're sponsoring right now and
(26:36):
hope to do more in the future.It's all super exciting and it
really speaks to me.It speaks to how complicated these
diseases are and the idea thatthere may be hundreds of forms of
Crohn's disease versus just one.It's so, as you said,
(26:58):
it's so multifactorial.There's just and the more you listen
to these researchers, the heavierthat you know, that comes home.
Because and that's why wesponsor research, try to come at
it from different angles.We don't want to put all our
eggs in one basket and espouseone approach or one theory.
(27:19):
This is this is what we try todo because there's so many
things involved.And maybe, maybe, just maybe, one of
these approaches might be the key forsome relief or a cure eventually.
And that's that's good that we Ithink that we have several different
avenues of research going on?Absolutely, 100%.
(27:40):
And that's also why.Potentially one of the many reasons
why people may find that theirmedication that they try doesn't
work for them or it fails themafter a while is because, yeah,
there's so much going on there thatyou can't just address one aspect and
expect it to to work for everybody.There's so much happening and
(28:03):
it's individual, perhaps evenfor every person. So absolutely.
It's a lot. It's a lot.And that's why we use the word cures.
A lot of times I think becausethere can be a different cure
for different people ordifferent subsets of patients,
it depending on their disease inthe form of it. Right. Yeah.
(28:24):
We're probably not going to find justone. Sorry. Everybody listening.
Uh, there's probably uheveryone's going to need
something a little different.Um, so all right, as we're
talking here and we're gettinginto the weeds just a little bit.
And part of what I do.Part of what you do is we
communicate these very specific,very sciency things to non sciency
(28:49):
people in order to make them moredigestible and understandable.
So how does Propel a Cure goabout breaking these concepts
down to communicate them?Well, first of all, I have to say
that none of us are scientistsor have a scientific background.
I was a humanities major,so it was when I first got involved,
(29:10):
I was how did how do you allunderstand all this?
And and I think one thing is,and we don't profess to be we
don't try to give advice to oursupporters at all. Sure.
You know, they should alwaystalk with their provider.
But I think after a while of readingthis, you get used to some of the
jargon. You're looking things up.What does this mean?
And you know, other times we've we'vewe've asked researchers what do you
(29:33):
think are the implications of this.Do you have any thoughts of this
study?We go back to the labs that
we're sponsoring and sort of asktheir opinions sometimes.
So we we try to get just a sort of abasic knowledge of things that we
can. And then we do try to track.One of the things we do is try to
track the latest in research studies.We are online reading those.
(29:54):
And the more interesting orpromising ones we do try to present
to our supporters because weknow they're interested in that.
We are pure focused,research focused. So what?
What we do too is for a study, if wesay if we posted in social media,
we try not to take for granted that asupporter knows what a T-cell is
(30:18):
or knows what the mucosal immunesystem is, because I didn't know
that at one point, none of us did.And so we try to break down
terms like that.Perhaps we try to engage with
researchers online about studiesif they post a study.
And we also try to, if there's astudy from an academic journal,
(30:39):
will sometimes try to see, hasthis been in the mainstream media?
Does it cover it accurately andsort of run the mainstream media
version of it?Because let's face it,
those the academic studies are areal slog and they're very hard
to understand sometimes.So that's how we try to make it
a little more user friendly,because it is important.
But those are ways, I think,that that can sort of break it
down for those supporters or thosefollowers who who read what we're
(31:05):
we're sending or what we post.Mhm. I love that.
And the IBD community is very smart.And often they know so much
about these diseases already andthey're hungry to learn more.
So I love that you're doing that.All right.
So Angela tell me what's nextfor propel a cure.
(31:27):
Well we would love to fund asmany studies as we can.
We would love to be funding triplethe number. Quadruple the number.
Because I think we need to getas many going as possible.
That's all dependent on funding,but that would be the big goal.
This is the most we've ever funded.At one time we funded one
previous study.Before this, we've given about
(31:47):
$360,000 to research over thecourse of the last few years.
We had some interruptions duringCovid.
We had to really get our fundraisingin high gear, and that's really
happened the past few years.So that's our biggest goal.
We're also wanting to getinvolved with more
organizational partnerships.I think there's there's so many great
(32:10):
organizations and small nonprofitsinvolved in the IBD sphere that
we would like to work togetherwith them and support each other.
So that's one thing we're goingto be trying to do more of.
We'd also love to get somecorporate sponsorships and
partnerships and explore thatwhich we haven't done much of.
To this point, we've been we'vebeen grassroots patient supported.
(32:33):
And we're looking at that thatfield as well. So.
So those are just a few of thethings that we're, we're looking at
and hope for. Amazing. I love it.Angela, I want to ask you a little
bit more personal question.Now get to know you a little bit
more.Um, right now you're like, oh my
gosh, what are you going to ask me?Um, so when we were talking
(32:55):
offline in planning this episode,you told me that you have an
interest in genealogy.And I think that that's also
something that's maybe a littlecommon in the IBD community.
I'm wondering if you have anyadvice or anything that you would
tell people who want to getstarted working in genealogy?
I mean, I found it that could bea whole other podcast.
(33:18):
But yeah, it's just been it's beenso rewarding and so humbling.
And just to see some of theresilience that ancestors had and
some of the stuff they went through,and I think sometimes it's it lets,
you know, they went through all this,and they're the only reasons
you're here.And so I think sometimes it
gives you the inner strength to,to plug through whatever we are
(33:41):
going through.As individuals, I have found that
one of the biggest takeaways it'sjust been it's been amazing.
I subscribe to Ancestry.com, butyou have to go really beyond that.
I think you have to have a veryskeptical eye knowing that
records weren't perfect.Uh, doing your own independent
research and talking,talking to your older relatives
(34:02):
who are still alive. Yeah.Visiting local county libraries
and courthouses and things likethat to try to get the real story
behind just the dates and the names,because that's the most
interesting part that their lives.And so that's really what I
would what I would advise peoplegetting started in it.
(34:22):
For those who are into detail inhistory, I think it's a very
rewarding, uh, hobby.And I really didn't get into it until
after my children were out of thehouse. I just didn't have time.
I started on it as a teenager,talking to great grandparents
and so forth, and then I put itaside for decades because I knew
once I got started, I again,I wouldn't be able to let go of it.
So I really wanted to wait untilI had time to pursue it.
(34:44):
But that said, there are people whomake time that you know, they only
do it a little bit a week and youcan do that as well. Yeah, yeah.
Uh,it is a hobby of my mother's as well.
So and I think one of the key thingsthat would not have occurred to me as
a person who tends to be a littleblack and white and a rule follower,
that you're often relying onthings like census data, right?
(35:07):
Or, um, military records are greatresources, but you are reliant on
whomever took that census data tohave been recording it correctly,
and that's not always the case.So you do have to have that slightly,
as you said, skeptical eye.And think about it for a minute and,
(35:27):
um, connect it to if you can connectit to some other type of a record,
or an oral history of some kindthat can really help you out,
because the birth dates in thecensus are not always right.
Who was living at whateverparticular household is not always.
Right, and they're ten years old,ten years younger.
In the next census that happensto people lie about their age.
And um, so yeah, I think youhave to have a skeptical eyes.
(35:50):
And it's a very I think once youreally get into it,
it's a very intuitive type hobby.And you have to ask yourself what
makes sense and what what do you knowfrom what you've studied before, what
you've seen in other people's livesat that time and other ancestors?
What was the is there a pattern?What was the pattern here?
So it's it's it's fun.I highly recommend it.
(36:12):
I would say also,there's probably a huge crossover
in the critical thinking skillsbetween looking at scientific
research and looking at genealogy.And those two things really do
complement one another.Yeah, a lot of analysis there.
A lot of analysis.All right, Angela, as we wrap up,
I would love for you to tell everyonewhere they can follow propel a cure
(36:34):
across the internet. Absolutely.You can find us at our website
at propel your and I there.You can sign up for our
quarterly e-newsletter.You can see the latest updates,
quarterly updates from our lab.You can also.
One thing I didn't talk about isyou can also watch our videos.
We do another thing we do forour supporters.
(36:57):
And everybody out there in theIBD community is interview
researchers who are on the frontlines of Crohn's disease research,
and we ask basic questions.That's another way that we try to
break down the research for people.We asked people about their studies,
and if we see an interesting study,we try at times to follow up
with that researcher, hey,can we do an interview with you
and post it? So that's there.We also are on Facebook,
(37:22):
Instagram X and LinkedIn so youcan follow us there.
We also post our results,their study updates,
research and so they can find usthere as well. Um, I love that.
Yeah, I will put all that informationin the show notes and on my website
so that people can find it there.Angela, thank you so much for
(37:46):
working with me to create thisepisode and for explaining more
about ProPublica and everything thatyou're doing for the community.
It is really exciting and I amabsolutely invigorated by your
passion. So thank you so very much.Thank you so much for having me on,
Amber.
(38:08):
Hey super listener, thanks to AngelaClark for finding the time to
talk to me about Propeller Cure.Propeller cure funds research into
the origins of IBD in order to findcures and improve the lives of people
diagnosed with these diseases.As always,
links to a written transcript,everyone's social media handles,
and more information on the topicswe discussed is in the show notes
(38:31):
and on my website about IBD.If you enjoyed this episode,
please consider sharing it withsomeone else or going to rate this
podcast about IBD to leave a rating.Reviews and ratings will help me grow
this show and bring you more greatcontent. Once again, that is great.
(38:53):
This podcast about IBD.Thanks for listening.
And remember, until next time,I want you to know more about IBD.
About IBD is a production ofMail and Tool Enterprises.
It is edited, written, produced,and directed by me, Amber Tresca.
(39:16):
Mix and sound design is by MackCooney.
Theme music is from Cooney Studio.
I'm Amber Tresca and this isabout IBD.
I'm a medical writer and patienteducator who lives with a J
pouch due to ulcerative colitis.It's my mission to educate people
living with Crohn's disease orulcerative colitis about their
disease, and to bring awarenessto the patient journey.
Scientific research is importantto advance our understanding of
all diseases and conditions,but it's really critical in
(00:27):
inflammatory bowel disease becausethese conditions are so complicated.
We now know that there may behundreds of genes involved in
the development of Crohn'sdisease and ulcerative colitis,
but not everyone who has thegenes will go on to have IBD.
That's why it runs in families.But most people with an IBD
don't have a family member whoalso lives with the condition.
(00:50):
There's an environmental component,meaning that there's one or more
factors that starts the processof inflammation.
Like I said, it's complicated.My guest is Angela Clarke, the CEO
and president of Propel a Cure.Propel a cure is a grassroots
nonprofit that funds research intothe causes of Crohn's disease.
(01:10):
Angela tells us more about PropellingCures mission, why they are so
passionate about research, and whatkinds of studies they fund in order
to get us closer to finding cures.Originally from Georgia,
Angela received her bachelor's inpolitical science from Maryville
College and her master's degree inWestern European Government and
(01:34):
politics from the London School ofEconomics and Political Science.
In the past, she enjoyed a careerin the federal government and also
worked in local radio and television.Most recently,
she served as a marketingdirector at a private school.
She and her husband have a sonand a daughter.
Angela became involved in propela cure after the Crohn's
(01:57):
diagnosis of a relative.and she is passionate about
supporting innovative researchthat pushes beyond the current
therapy landscape to ultimatelylead us to a cure.
Angela Clarke, welcome to about IBD.Thank you so much for having me,
Amber. I'm so excited. So am I.I cannot wait to learn more about
(02:19):
your organization, propel a cure,of which you are the president
and CEO. Gosh, that's a lot.Um, so I wonder if you would
start by telling me a little bitmore about how you first got
involved with Propel Cure. Okay.Well, I have just been president
and CEO for just a few months now,but I originally got involved
(02:41):
after the diagnosis of an adultchild that was 5 or 6 years ago.
It was a very sudden onset, uh,aggressive onset of Crohn's disease.
And, uh, we're talking aboutalmost every complication you
can think of right away.Three surgeries within the first
nine months.So needless to say,
it was a scary time.A worrying time of helpless feeling
(03:05):
time. And as a lot of people do.I started getting on the internet,
looking up everything I could thinkof. Trying to learn what I could.
And in the course of doing that,I connected with the wonderful
lady named Annabel Hall,who also had a child, an adult child
who had been diagnosed with Crohn's.She had started a nonprofit at
(03:28):
501 C3 called Propel A Cure forCrohn's Disease.
The message and the mission of thisorganization was so intriguing and
inspiring to me that I couldn'tsay no when she asked me to help,
so I joined the board at that time,and that's how I got involved.
I never really thought I would beheavily involved in a nonprofit,
much less a leading one.And like I said,
(03:50):
that's a fairly new thing.Annabel retired after putting in a
good 6 or 7 years of doing so much.And that's that's how I'm where
I am today with it. Mhm.Amazing. Um, yeah.
I've talked to so many people whothat's that's kind of the journey.
Right.Is that it's not something you
ever thought of until it affectedyou and your family so deeply.
(04:15):
And then it becomes something thatyou really get called to do in a,
in a passionate way.Um, but I'm wondering, though,
also because ProPublica is it'sa grassroots nonprofit,
and that's I know from personalexperience these things are not
easy to get started, get going.Uh, how did everything begin?
(04:39):
Can you tell me a little bitabout the history? Okay.
Uh, Annabelle, who was our founder,who I just mentioned.
She started that, and she.This lady, when her son was
diagnosed, she also started trying tolearn everything she could to the
point of reading medical journals,trying to educate herself.
(05:00):
And actually what I consider tobe very gutsy,
reaching out to researchers inthe field with no background.
She was very frustrated thatthere there isn't a cure for
Crohn's disease in other Ides.And so she started talking to
researchers, contacting them andseeing a real need,
finding out that there are lots ofpassionate scientists with bold ideas
(05:23):
who just don't have the funding.And so she decided she was going
to step in and try to fulfill thatneed by raising funds for them.
So that's that's how basicallythe organization started.
And as time went on,she added to our board,
we are all Crohn's patients orfamily members of Crohn's patients.
So that's what makes us uniqueas well.
(05:46):
So that's that's how we got offthe ground.
It's so interesting talking toresearchers.
I think one of my favoritequestions ever to ask of
researchers in particular is whatwould your dream study look like?
Like if you had any amount offunding, what would you do?
(06:08):
And I'll tell you,people light up like Christmas trees
when you ask them that question.So I imagine it's a gutsy thing
to do.But I also imagine that it was
really a wonderful experience forresearchers to hear from someone so
passionate and to get those kindsof questions and to have that,
(06:31):
to have that point of contactthere from a real family that
was dealing with real issuesrelated to Crohn's disease.
I agree, because it's not oftenthat researchers have many
opportunities to come in contactwith with the people or families
that they're trying to help.And one thing I meant to mention is
that we're specifically targetedon the underlying causes and
(06:52):
players in Crohn's disease, which,you know, there are a lot of studies,
a lot of research going on, but weare specifically focused on that.
And that was part of our our mission.And that's what she,
Anabel started out to do.And that's where we've stayed
focused. Right, right.And you told me or I read it,
I can't remember maybe both thatProPublica is an all volunteer
(07:17):
organization. That is difficult.Uh, can you tell me,
how do you make that all work?Do you have any magic?
Well, I'll bring up that word again.I think I've already mentioned a
couple of times that passion.I think that stems from actually
having the experience with thedisease yourself that keeps it going.
(07:37):
Uh, we want cures as much forourselves and our loved ones as
our supporters do.So that that really ties it all in.
Uh, our team is small,but we all understand each other.
We're each other's.We support each other beyond
just our nonprofit, you know,in personal dealings as well,
what we're dealing with on a day today basis or month to month basis.
(08:00):
So we do talk and and keep in touch.And I do consider them all my
friends and likewise hopefully.But I think also the passion
that we feel from supporters ofPropeller Corps that that have
so much hope and they'veexpressed so much gratitude and,
and they're counting on us and wewe take that very, very seriously.
(08:21):
I think also with a small allvolunteer nonprofit,
you really have to know yourlimits because you don't have the
resources of the bigger guns.So we there's so many things
we'd like to do that, you know,we have a million ideas, but we have
to say to ourselves, wait, not now.Maybe next year or some other point.
And I've been told by team members,yeah, that's great.
(08:42):
But, you know,we're already doing x, y, z.
So you have to know your limitations.And that's hard sometimes because
there's so many needs I think.And I think also another thing
is you have to be flexible,especially in a small organization,
which is also a strength.We're small enough that we are
flexible, so we wait.We may have certain roles,
but we are able to step outsidethem and pitch in to other things.
(09:05):
And that's, that's that's a goodthing. So that helps us as well.
Yeah for sure.And the fact that it's also like, uh,
kind of a support group for you all,I mean, that's helpful too, is to
have those personal connections.And that must also fuel that passion
and help you keep going because, yes,you're supporting the community,
(09:26):
but that can sometimes feel like,oh, it's over here.
You know, it's it's like thecommunity, um, but you have a real
community in front of you all ofthe time that you're actually
working with and supporting.So it's just so that's how
that's the magic.That's how you're making it work,
right? A big part of it.Yeah, yeah. Yeah.
(09:46):
So let's talk for a minute aboutthe mission.
You have mentioned a fewdifferent things.
Uh, but how is propellor cureaddressing problems that are
faced by the IBD community? Okay.Well, our mission again is to
support scientists investigatingthe underlying causes and
(10:06):
players in Crohn's disease tolay the path to a cure.
And what we're trying to do is,is shake things up,
shake up the status quo.Um, and I'll say again, we're
grateful for the therapies that areout there. Thank God we have them.
We're either on them or havefamily members who are.
But we're trying to get beyondthat because those those address
(10:30):
the symptoms.But we're trying to get to the
causes. Why is Crohn's happening?You know what goes wrong in the body.
And it's such a multifactorialdisease.
There's still so much we don't know.We're making progress.
But, you know,I think we have to acknowledge
that the medications currently outthere don't work for everyone.
There's a significant subset ofpatients who are Or refractory
(10:52):
or they don't.Um, last, uh, and they have to
jump from biologic to biologic.So we're really trying to go beyond
that. Uh, get some other options.And I think, you know, one of the
things we're trying to do is say,you know, we see a lot of studies
and that are fascinating.And but we never hear any follow up
(11:16):
or we see studies that, that are,you know, kind of retread some
of the same ground we've seen.So we're trying to search out
new avenues,scientists who have these bold ideas.
So that's that's sort of themessage we're trying to bring.
Let's let's get beyond what we have.Let's get some options.
Wouldn't it be great to have amedication that we're not on for
(11:36):
life, or something that we take whenwe have a problem and just when we
have a problem with our disease?So. Right.
Um, and who wouldn't want that?So those are some of the,
some of those the projects thatwe're sponsoring are actually
looking at some things like that.So that's that gets us very excited.
I think another thing we're trying toaddress is that I know we've made
(11:58):
some progress, but there's still somany people out there who don't know
the series of Crohn's disease whostill think it's a bathroom disease.
And so our organization and ourmessaging, we try to, you know,
we relay the statistics and wethink that's important because
it needs to be taken seriously.And I think that in turn helps the
(12:19):
funding and helps get the messageout to the population at large.
Right, absolutely.I am 100% on board with that,
and I'm chuckling a little bitat the idea of not the idea,
but at the studies that areinteresting and are great work.
(12:39):
But then they make a big splash, youhear about them and then what next?
You know, you're not hearing about.And it probably has to do with
maybe funding.And mean, there's so many studies.
I mean, thousands and thousandsof studies every year that and
it's hard to keep track of.And I know we'll probably talk
about that a little later.But there is a sense of hope
(13:00):
that's created.And then you're kind of saying
what's next?And and that's what we,
you know, we hear from oursupporters about that too.
And, and, uh,and I think it makes it hard to know
sometimes which ones that you know,what's really there, what's where.
When is there something really there?And sometimes we won't know for years
if there's something there becauseit's going to take a lot more work.
Almost every study says morefollow up needed to know. Yeah.
(13:24):
Yes, yes. When?When I was working, uh,
for a medical publishing companyand we produced journals for,
uh, health care providers,physicians mostly,
that was something that we excisedfrom everything that we wrote.
Don't ever say more study. Is needed.Because that's that's a given.
(13:47):
So you don't actually need towaste ink on saying that. So, um.
Yeah, totally, totally true.Um, with that and what I'm seeing now
too, uh, being in the community,I was diagnosed at 16. I'm 52 now.
And being in the professional, uh,writing and, uh, medical publishing
community for more than 20 years,things are coming around again.
(14:11):
So I see people that or I hear frompeople who will ask me about some
piece of research, some modality.And I was like, oh, yeah, there's
research on this 20 years back.And for whatever reason,
it just hasn't gone anywhere.Maybe the pilot study was great,
but then they did a bigrandomized study and then that
(14:34):
didn't pan out anything.And then the idea comes back
around again 20 years later,maybe with a different approach
or a different way to research itor look at the data or whatever.
And so, so so for me,sometimes I'm like, yeah, yeah,
I have heard of that before.Yeah. And I think yeah.
And I think in the researchworld there's so much going on.
And researchers tend to be focused ontheir niche, rightfully so, that it's
(14:56):
hard to hard to keep track of what's,what's going on and what's been
studied and or how it's been studied.And I know there they try their best
and it's, it's it's a hard field todo research in. Oh yeah. Totally.
It's hard for anybody to keep upwith everything that's going on.
I try to remember that that's agood thing, because there were a
(15:17):
lot of years where it didn'tseem like much was moving.
So things are moving along now.And as I always say, kids,
get off my lawn.Um, having been in this space for,
uh, you know, a hot minute.Um, yeah. So.
All right, a big thing with researchis fundraising. I mean, that's huge.
And for non-profits,it takes up a lot of time and energy.
(15:41):
It is also,I find it emotionally challenging.
How does propel a cure approachtheir fundraising efforts.
Well,that's our our biggest focus. And.
Because we're small,there's an added benefit,
another added benefit to that.And that is we are virtual.
We are all volunteer so thatmore than 97% of funds go
(16:03):
directly to research.Our overhead is is almost negligible.
So that's that's a good thing.That's one help in our approach.
We tend to cure.We have found about $100,000,
give or less,to be the sweet spot for the type of
preclinical research we're funding.They tend to be about two year
studies, and I should havetalked a little more about that.
(16:23):
But these are studies that takeplace in the lab before things
ever go to trial.And in this stage, scientists are
trying to prove a hypothesis.And what they are able to do with the
studies we fund are then take them tobigger funding entities like the
government, sources like the NIH,like private investors and say,
(16:48):
this is what we have found.Look at this data.
So we give them the ability toget that data.
And that's that's how that's whatwe're trying to raise money for.
And these tend to be novel.Again innovative studies that have
would have a hard time gettingoff the ground. Otherwise.
They do have a hard time.And scientific research is hard to
fund anyway in the best of times.So we see ourselves as sort of
(17:13):
bridging that critical gap there.We raised most of our money from
family, patients, friends,and mostly online because we're
a virtual organization,so we don't have in-person events.
So we really tried to get our messageout, which we think really resonates,
hopefully with the community andas many ways as we can and as many
(17:34):
different channels as we can is thatwe're working toward a cure. We work.
We're working for those therapeuticadvances that lead us to a cure.
So that's that's how we tend toapproach it.
And the other thing we do is,I think with any kind of funding
for research, for any disease,it's it's a little tougher in that
you don't have this immediate result.You don't have these families
(17:58):
that are being fed or thesepatients that are being supported
with their needs right now.It's this stuff takes years.
And it's, you know,it doesn't always pan out.
There's there's a risk involvedwith research.
So what we try to do is be veryclear, by requiring those labs for
sponsoring, to provide quarterlysummaries of what's happened in
(18:19):
the lab over the last quarter.And that tells our donors what,
what their money is going toward.Now, not everybody may read every
report or all of every report.Some of it's it's kind of jargon, uh,
describing what they did in the lab.But but a lot of supporters are
very interested to read that andhang on every word because it's,
it's it affects them and itaffects their future.
(18:41):
So we, we try to do that as well.And so that we feel that helps
as well in the fundraising.Coming up,
Angela tells us about the excitingresearch propelling her is funding.
(19:09):
Angela,propel a Cure funds these projects.
I imagine that it is extremelydifficult to choose which ones to
fund. So how do you go about that?We have a process that has evolved
over time that has worked very well,that we're now using,
and when we have the funds,we tend to raise funds as we go.
Until now, we're at the stage wherewe have partially funded a project,
(19:33):
which was a big step for us, andtaking that leap of faith to raise
the rest of it for a two year study.They have probably year, half of
it funded, and we're confidentwe'll get to that two year mark.
But what we do is we have ascientific advisory board that's
composed of for researchers andGI clinicians with a lot of
experience in IBD.They've been involved in studies
themselves, so we rely on theirexpertise to help us choose.
(19:57):
So at this point, we do a when itis time to fund another study,
we do a grant competition.So we try to publicize it as
widely as we can through our emaillists social media referral.
However,we can bring it to the attention
of those involved in IBD research.And we we encourage anyone in
(20:18):
the world to apply.Doesn't matter what country you're
in, if you're a scientist, itdoesn't matter if you're in private
industry or an academic institution.Doesn't matter if you're early
career or late stage,if you've been at it for years.
We just want the projects thatwe think will or hope will help
our patients most.And so we put out publicity
(20:39):
about this.We invite them to submit proposals.
And again we're looking forspecifically for proposals that
will be impactful, innovative.Lay the groundwork for a cure.
Hopefully.And so those are those are the kinds
of proposals we're trying to attract.Once we get those,
we let our scientific advisory boardgo through those. They have a rubric.
(21:01):
It's based on NIH criteria.They are looking at things like
what does it bring that's new tothe field.
What if you have this kind ofchallenge?
What how do you pivot from that?Do you have the infrastructure
that required it would berequired for this type of study.
So they're looking at all thesekinds of details and they score
(21:23):
the proposals that we receive.And sometimes we go back.
Sometimes they have a question or aconcern that we've gone back to the
individual or lab submitting theseproposals that they then answer.
We've had some been asked to rewritetheir proposals for their projects.
So it's a very rigorous process.And once we have the scores and
(21:44):
the feedback of our scientificadvisory board, we then talk
about it as a group, go by theirguidance and make that decision.
And I'm happy to say with thelast competition we did that we
chose a winner.And that grant that 100,000
grant was awarded.But we later, as we were able to
raise more funds, we were able tofund a couple of more of them.
(22:08):
So that was very rewarding becausethere were there were more there
were quite a few that were veryinteresting and very worthwhile.
So that was that was good to beable to do that.
It sounds difficult, but also kind ofgood problems to have, you know.
Yeah, I'm sure there's funding. Yeah.And that there's so many, uh, people,
(22:28):
so many passionate researchersout there that are submitting
these proposals and, you know,just excited to do the work.
And we find that the ones who dotend to I mean, they are the more
innovative researchers, the onesthat and are so passionate about the
type of proposals that we receive.So they're on the same page as
(22:49):
we are and that all our patientsupporters are, and they're
working hard and innovative waysto to figure out these problems.
And outside the box. Right. Yeah.So do you have any highlights?
Can you share some research with us?Something that Propeller Kerr has
sponsored that you found to beparticularly compelling? I'd love to.
(23:13):
Right now we have three projectsunderway that we're sponsoring.
And they all come at the diseasefrom very different angles.
Uh, the first one is Therapeutics,which is a Boston area biotech
company, and they are looking at themucosal innate immune system, the
immune system that you're born withand what they see to be a deficiency
(23:36):
in the molecules associated withthat in Crohn's patients.
So they're seeing much less ofthis molecule in Crohn's
patients and a higher normallevel in healthy patients.
So they've really been lookingat that.
So far their hypothesis has beenvalidated in the laboratory.
And they just started testing atherapeutic compound in mice that is
(24:00):
lowering the inflammation in themice have actually been transplanted
with Crohn's disease patient tissue.So it's it's that's been a real
advance.We are also sponsoring a project.
And these next two I'm going tomention are newer ones.
But we're also sponsoring aproject at the Woolston Lab at
Northeastern University in Boston.And it's actually there,
(24:23):
a chemical engineering department atthe Woolston Lab that is looking
at the role of hydrogen sulfideand intestinal inflammation.
Hydrogen sulfide is a gut foundin the microbe.
And it's it's very been verypoorly understood.
It's been studied a little not a lot.And so they're trying to, uh,
see what role it may play inCrohn's disease.
(24:46):
Higher levels of hydrogensulfide can occur.
Hand in hand with that increasedinflammation.
So they have actually engineeredtheir own microbes,
synthetic microbes,to try to manipulate the levels
of hydrogen sulfide in the body.So they have achieved that.
Uh, they found out they can theycan increase, decrease,
(25:06):
sort of manipulate that microbe.And so now they're going to start
looking at what effect it mayhave on the pathology of Crohn's.
And by the way, they are lookingat trying to develop an oral non
immunosuppressive therapeutic aspart of that research,
as is their therapeutics.The other lab I mentioned that of
course they're testing that compound,that compound right now in mice.
(25:29):
So that that is what they'relooking toward. Mhm.
And the third project we'responsoring right now is at the
Ghosh lab at UC San Diego,and they are looking at the
partnership between two moleculescalled not, to which a lot of
people may have heard of and give,which is an acronym that stands
(25:50):
for a much longer name,but they are seeing an impaired
partnership between these twomolecules in Crohn's patients.
So it's essentially broken.They've detected what they describe
as sort of a broken piece of aparticular type of nod to molecule.
And they're trying to and theseare this partnership is involved
in inflammation and bacterialclearance in healthy patients.
(26:14):
So something goes wrong inCrohn's patients with this.
And they're trying to look at how howcan we repair this relationship.
What is what is wrong with thispartnership.
And how can we make it rightagain so that it can improve
lives of Crohn's patients?So that's what they're looking at as
well. And that one just got started.So those are just several
examples that we're uh,we're sponsoring right now and
(26:36):
hope to do more in the future.It's all super exciting and it
really speaks to me.It speaks to how complicated these
diseases are and the idea thatthere may be hundreds of forms of
Crohn's disease versus just one.It's so, as you said,
(26:58):
it's so multifactorial.There's just and the more you listen
to these researchers, the heavierthat you know, that comes home.
Because and that's why wesponsor research, try to come at
it from different angles.We don't want to put all our
eggs in one basket and espouseone approach or one theory.
(27:19):
This is this is what we try todo because there's so many
things involved.And maybe, maybe, just maybe, one of
these approaches might be the key forsome relief or a cure eventually.
And that's that's good that we Ithink that we have several different
avenues of research going on?Absolutely, 100%.
(27:40):
And that's also why.Potentially one of the many reasons
why people may find that theirmedication that they try doesn't
work for them or it fails themafter a while is because, yeah,
there's so much going on there thatyou can't just address one aspect and
expect it to to work for everybody.There's so much happening and
(28:03):
it's individual, perhaps evenfor every person. So absolutely.
It's a lot. It's a lot.And that's why we use the word cures.
A lot of times I think becausethere can be a different cure
for different people ordifferent subsets of patients,
it depending on their disease inthe form of it. Right. Yeah.
(28:24):
We're probably not going to find justone. Sorry. Everybody listening.
Uh, there's probably uheveryone's going to need
something a little different.Um, so all right, as we're
talking here and we're gettinginto the weeds just a little bit.
And part of what I do.Part of what you do is we
communicate these very specific,very sciency things to non sciency
(28:49):
people in order to make them moredigestible and understandable.
So how does Propel a Cure goabout breaking these concepts
down to communicate them?Well, first of all, I have to say
that none of us are scientistsor have a scientific background.
I was a humanities major,so it was when I first got involved,
(29:10):
I was how did how do you allunderstand all this?
And and I think one thing is,and we don't profess to be we
don't try to give advice to oursupporters at all. Sure.
You know, they should alwaystalk with their provider.
But I think after a while of readingthis, you get used to some of the
jargon. You're looking things up.What does this mean?
And you know, other times we've we'vewe've asked researchers what do you
(29:33):
think are the implications of this.Do you have any thoughts of this
study?We go back to the labs that
we're sponsoring and sort of asktheir opinions sometimes.
So we we try to get just a sort of abasic knowledge of things that we
can. And then we do try to track.One of the things we do is try to
track the latest in research studies.We are online reading those.
(29:54):
And the more interesting orpromising ones we do try to present
to our supporters because weknow they're interested in that.
We are pure focused,research focused. So what?
What we do too is for a study, if wesay if we posted in social media,
we try not to take for granted that asupporter knows what a T-cell is
(30:18):
or knows what the mucosal immunesystem is, because I didn't know
that at one point, none of us did.And so we try to break down
terms like that.Perhaps we try to engage with
researchers online about studiesif they post a study.
And we also try to, if there's astudy from an academic journal,
(30:39):
will sometimes try to see, hasthis been in the mainstream media?
Does it cover it accurately andsort of run the mainstream media
version of it?Because let's face it,
those the academic studies are areal slog and they're very hard
to understand sometimes.So that's how we try to make it
a little more user friendly,because it is important.
But those are ways, I think,that that can sort of break it
down for those supporters or thosefollowers who who read what we're
(31:05):
we're sending or what we post.Mhm. I love that.
And the IBD community is very smart.And often they know so much
about these diseases already andthey're hungry to learn more.
So I love that you're doing that.All right.
So Angela tell me what's nextfor propel a cure.
(31:27):
Well we would love to fund asmany studies as we can.
We would love to be funding triplethe number. Quadruple the number.
Because I think we need to getas many going as possible.
That's all dependent on funding,but that would be the big goal.
This is the most we've ever funded.At one time we funded one
previous study.Before this, we've given about
(31:47):
$360,000 to research over thecourse of the last few years.
We had some interruptions duringCovid.
We had to really get our fundraisingin high gear, and that's really
happened the past few years.So that's our biggest goal.
We're also wanting to getinvolved with more
organizational partnerships.I think there's there's so many great
(32:10):
organizations and small nonprofitsinvolved in the IBD sphere that
we would like to work togetherwith them and support each other.
So that's one thing we're goingto be trying to do more of.
We'd also love to get somecorporate sponsorships and
partnerships and explore thatwhich we haven't done much of.
To this point, we've been we'vebeen grassroots patient supported.
(32:33):
And we're looking at that thatfield as well. So.
So those are just a few of thethings that we're, we're looking at
and hope for. Amazing. I love it.Angela, I want to ask you a little
bit more personal question.Now get to know you a little bit
more.Um, right now you're like, oh my
gosh, what are you going to ask me?Um, so when we were talking
(32:55):
offline in planning this episode,you told me that you have an
interest in genealogy.And I think that that's also
something that's maybe a littlecommon in the IBD community.
I'm wondering if you have anyadvice or anything that you would
tell people who want to getstarted working in genealogy?
I mean, I found it that could bea whole other podcast.
(33:18):
But yeah, it's just been it's beenso rewarding and so humbling.
And just to see some of theresilience that ancestors had and
some of the stuff they went through,and I think sometimes it's it lets,
you know, they went through all this,and they're the only reasons
you're here.And so I think sometimes it
gives you the inner strength to,to plug through whatever we are
(33:41):
going through.As individuals, I have found that
one of the biggest takeaways it'sjust been it's been amazing.
I subscribe to Ancestry.com, butyou have to go really beyond that.
I think you have to have a veryskeptical eye knowing that
records weren't perfect.Uh, doing your own independent
research and talking,talking to your older relatives
(34:02):
who are still alive. Yeah.Visiting local county libraries
and courthouses and things likethat to try to get the real story
behind just the dates and the names,because that's the most
interesting part that their lives.And so that's really what I
would what I would advise peoplegetting started in it.
(34:22):
For those who are into detail inhistory, I think it's a very
rewarding, uh, hobby.And I really didn't get into it until
after my children were out of thehouse. I just didn't have time.
I started on it as a teenager,talking to great grandparents
and so forth, and then I put itaside for decades because I knew
once I got started, I again,I wouldn't be able to let go of it.
So I really wanted to wait untilI had time to pursue it.
(34:44):
But that said, there are people whomake time that you know, they only
do it a little bit a week and youcan do that as well. Yeah, yeah.
Uh,it is a hobby of my mother's as well.
So and I think one of the key thingsthat would not have occurred to me as
a person who tends to be a littleblack and white and a rule follower,
that you're often relying onthings like census data, right?
(35:07):
Or, um, military records are greatresources, but you are reliant on
whomever took that census data tohave been recording it correctly,
and that's not always the case.So you do have to have that slightly,
as you said, skeptical eye.And think about it for a minute and,
(35:27):
um, connect it to if you can connectit to some other type of a record,
or an oral history of some kindthat can really help you out,
because the birth dates in thecensus are not always right.
Who was living at whateverparticular household is not always.
Right, and they're ten years old,ten years younger.
In the next census that happensto people lie about their age.
And um, so yeah, I think youhave to have a skeptical eyes.
(35:50):
And it's a very I think once youreally get into it,
it's a very intuitive type hobby.And you have to ask yourself what
makes sense and what what do you knowfrom what you've studied before, what
you've seen in other people's livesat that time and other ancestors?
What was the is there a pattern?What was the pattern here?
So it's it's it's fun.I highly recommend it.
(36:12):
I would say also,there's probably a huge crossover
in the critical thinking skillsbetween looking at scientific
research and looking at genealogy.And those two things really do
complement one another.Yeah, a lot of analysis there.
A lot of analysis.All right, Angela, as we wrap up,
I would love for you to tell everyonewhere they can follow propel a cure
(36:34):
across the internet. Absolutely.You can find us at our website
at propel your and I there.You can sign up for our
quarterly e-newsletter.You can see the latest updates,
quarterly updates from our lab.You can also.
One thing I didn't talk about isyou can also watch our videos.
We do another thing we do forour supporters.
(36:57):
And everybody out there in theIBD community is interview
researchers who are on the frontlines of Crohn's disease research,
and we ask basic questions.That's another way that we try to
break down the research for people.We asked people about their studies,
and if we see an interesting study,we try at times to follow up
with that researcher, hey,can we do an interview with you
and post it? So that's there.We also are on Facebook,
(37:22):
Instagram X and LinkedIn so youcan follow us there.
We also post our results,their study updates,
research and so they can find usthere as well. Um, I love that.
Yeah, I will put all that informationin the show notes and on my website
so that people can find it there.Angela, thank you so much for
(37:46):
working with me to create thisepisode and for explaining more
about ProPublica and everything thatyou're doing for the community.
It is really exciting and I amabsolutely invigorated by your
passion. So thank you so very much.Thank you so much for having me on,
Amber.
(38:08):
Hey super listener, thanks to AngelaClark for finding the time to
talk to me about Propeller Cure.Propeller cure funds research into
the origins of IBD in order to findcures and improve the lives of people
diagnosed with these diseases.As always,
links to a written transcript,everyone's social media handles,
and more information on the topicswe discussed is in the show notes
(38:31):
and on my website about IBD.If you enjoyed this episode,
please consider sharing it withsomeone else or going to rate this
podcast about IBD to leave a rating.Reviews and ratings will help me grow
this show and bring you more greatcontent. Once again, that is great.
(38:53):
This podcast about IBD.Thanks for listening.
And remember, until next time,I want you to know more about IBD.
About IBD is a production ofMail and Tool Enterprises.
It is edited, written, produced,and directed by me, Amber Tresca.
(39:16):
Mix and sound design is by MackCooney.
Theme music is from Cooney Studio.
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