September 17, 2025 • 29 mins
Corbin is an engineer who faced a dual diagnosis with a 1.8% survival rate as a problem to solve. He didn’t see despair with that number - he saw a possibility. The possibility that, if he was able to keep living, doctors would find a way to increase that number significantly. He did, and today he’s doing well. Crucial to his determination was the CIDP community, which welcomed him with open arms. Corbin shares how he found his community and his jump from advocating for himself to advocating for a movement.
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Speaker 1 (00:08):
Hello, and welcome back. This season, we're exploring what it
really means to find strength, resilience, and to speak up
for yourself when navigating life with a rare autoimmune condition
like MG or CIDP. For people living with these conditions,
that can feel like a lonely road. But today's guest,
Corbin Whittington, reminds us how powerful it can be to
(00:29):
find connection and strength within the rare disease community. Corbyn's
a global strategist, engineer and a passionate advocate, living with
both dilated cardiomyopathy and CIDP. At one point, doctors gave
him less than a two percent chance of survival. But
instead of backing down, Corbin approached his conditions like an engineer,
(00:50):
thinking through every variable that could improve his quality of life.
One major comfort for Corbin was community support. In the
face of his ci IDP diagnosis, Corbyn found the GBS
CIDP Foundation. Engaging with other members of that community helped
him feel less alone. He later joined the board of
the foundation to connect with others with GBS and CIDP.
(01:13):
Now leading the community support he found so valuable himself.
Let's meet him now, Hi, Corbyn, it's so nice to
meet you. Thank you so much for joining us today.
Speaker 2 (01:23):
Wello Martin, thank you for having me today. It's nice
to be here and I'm looking forward to our conversation.
Speaker 1 (01:29):
Corvin, you said that doctors gave you a one point
eight percent chance to live, but that you did not
take that as final. How did you hold on to
hope when nearly every expert said there was none.
Speaker 2 (01:45):
So, of course, that was probably the most significant challenge
that I ever faced in my life. But it wasn't
the only challenge, and it wasn't the first time I
got told had a slim chance of survival. I'm a
faithful guy, and I believe you can talk about faith
right and then you can put it to work. And
so that was a matter of trying to put it
to work. And it is another thing too, Martin. I
(02:07):
was at the time a thriving executive engineer at Letting
Engineers all over the world, and we were solving some
very complex problems, and I kind of knew that technology
was advancing really exponentially, and so I had a clue
that the information they were giving me was based upon
past data, and if I can hang on, there were
(02:29):
things coming that would probably shift that, so they gave
me something to cling to.
Speaker 1 (02:36):
Well, Corbyn's describing here really hits home for me and
I'm sure many of our listeners. It takes a rare
kind of determination to sit in that much uncertainty, to
hold on knowing the odds and still look for those
small windows of hope. Yeah. I mean it sounds like
you know, your knowledge based on your expertise, made you
(02:58):
hopeful that you knew something was on the way that
could help you.
Speaker 2 (03:02):
There's a slim window of opportunity, so the question got
to be what will it take to make it? What
will it take to be in that window?
Speaker 1 (03:11):
Yeah? And you also received care from one key cardiologist.
What role did that play?
Speaker 2 (03:20):
Oh? She was awesome. She was a world renowned, highly
recognized cardiologist. Since then, I've been treated by multiple cardiologists,
and to this very day, when they look back at
my records and they see her name on there as
the initial cardiologist, they'll go wow. I was fortunate enough
that when I changed hospitals at the time, this was
(03:42):
the third hospital looking for expertise. Kind of one of
the things I knew, and this is again from that
old engineering background, I knew that there's a difference in capabilities.
So I saw the best, and I was fortunate enough
that this particular doctor, she she took notice of my
case and thought it was very interesting. She just said,
(04:04):
there were things here that didn't make sense to her.
She sees all the data, she saw all the testing.
She's going to runt some more testing herself, but there
were things that make sense to her, and she wanted
to take that on, which gave me quite a bit
of confidence because I said, Okay, here's somebody I can
work with.
Speaker 1 (04:19):
Yeah. I mean, you mentioned before how you approached your
diagnosis like an engineering problem, because you're an engineer. Could
you tell us more about that mindset and how it
influenced your treatment journey.
Speaker 2 (04:34):
Part of my specialty was solving fairly complex problems. I
had studied statistical engineering, and I got certifications and some
pretty interesting applications, and had used that most of my
career solving some really deeply entrenched complex problems. And so
when I got this diagnosis, you know, I thought myself, well,
(04:55):
wait a minute, this is just another problem. But rather
than just say that, it's okay. But if I say
that and I mean it, then what do I need
to do, right, So, how do you go about solving
this thing any other engineering problems? What's my goal here
with milestones? What I'm looking for?
Speaker 1 (05:10):
Yeah, so you're the chief engineer. You have this agency
that you are putting yourself in the center of this,
you know, fantastic problem to solve, Corbyn, Was there a
specific moment that gave you hope during this search for answers?
Speaker 2 (05:26):
There were a couple of different moments. Only never really
stood out was when I was diagnosed with CIDB, and
it gave me hope because before that there were all
these unknowns, Like my body was just falling apart, I see,
and there were all these unknowns, and like I said,
from an engineering perspective, you know, you're trying to you know,
(05:46):
you got a column of unknowns and you got you know, knowns, right,
and you're trying to move things through this matrix, so
you reduce those amount of unknowns into you know, known
things that you can manage. Right. So along comes this
diagnosed the CIDP. At first glance you go, wow, you know,
now you've got two complicated diagnosis, right, But in my
(06:07):
mind I thought, yeah, but there's not much known about
either one maybe there's a thread that we can talk on,
and as it worked out, there was some indirect benefit.
Speaker 1 (06:18):
Interesting and so you described your experience as both terrifying
and deeply human. Can you talk more about what that
means to you.
Speaker 2 (06:29):
We all sail through life, right, waking up every day
with expectations anticipation of what your day is going to
be like. Right, then all of a sudden, one day
you're smacked in the head with a reality that's going
to challenge you. You know almost every facet physically, mentally, socially, financially,
and you didn't know that world existed. So all of
(06:53):
a sudden you find yourself vulnerable as a human. Yeah,
and it's terrifying to know that. Wait a minute, there's
things outside of my control. There's a whole reality here,
outside of my control that wasn't even on my radar.
But here I am in the stick of it. So
now what happens now.
Speaker 1 (07:12):
I understand, like you said, you're stepping into a whole
other side of life that makes us really recognize how
human we are in these bodies.
Speaker 2 (07:21):
Yeah, completely derailsy. In the months leading up to illness,
my wife and I were doing really well. We were
looking for a beach home. You know, we were looking
at the future, talking about what's retirement look like at
this amount of money, of that amount of money, with
these kind of assets, and maybe retirement was just like
ten years down the road. To said, okay, you know,
things are looking pretty good. And you know, my oldest
(07:43):
son and graduated college. The youngest was still in college,
but only a couple of years away, and we were like, hey,
this is what we've been working for. It's our time, right,
it's our time. Then all of us sudden, the rug
it's snatched out from under you.
Speaker 1 (07:59):
Yeah, and something you never even knew existed in the world.
And Corbyn, when you were first diagnosed, where did you
look to for support?
Speaker 2 (08:10):
You know, the physicians didn't have a lot of information.
I think they had to me a little pamphlet or
something that kind of had pictures, don't describe what it is.
But it was a real big mystery. So you know,
I do, like most people do, you kind of go
to Google, right, you know, sit there, Okay, well we'll
do that, and you get inundated with all this stuff.
(08:30):
But my wife did fine. She was one hundred percent
in this as well, right, so she did find the
GBSCIDP Foundation, and they had a website. It wasn't a
bunch of oh wolle was me. It was a site
that gave you some empowerment. So you go, oh, okay,
here's information, here's ways I can get involved, here's something
(08:51):
I can do. Right. As you gain confidence in being
involved in helping to solve your own problem.
Speaker 1 (08:58):
You can really hear it here. How in just moments,
Corbin realized that finding community wasn't just about information, It
was about belonging and realizing that you don't have to
face this alone. You can tell He felt the impact
of that almost immediately, just from knowing it existed. Excellent
(09:18):
and were you able to connect with other folks who
understood what you were going through?
Speaker 2 (09:23):
Oh yes, that's kind of the entry level of getting
involved the foundation. As a patient or as a caregiver.
You find community, right, so you get on here any
videos of other people talking about their stories. The biggest
thing for me was this event they have called a
walk and roll. The role part befers is some people
can't walk, so they're in devices and we'll chair and
so forth. It's an organized event, often around chapters in
(09:46):
a particular geographic area. Okay, And so for me, there
was gonna be a walk and roll held in Washington, DC,
and it was going to be at the you know,
the Washington Monument. Right. I looked at that and said, ooh,
I want to go. So you click on this thing
how you sign up, and it says now you can
formulate a team. I said, oh, I can get you know,
(10:09):
some of these folks that are you know, by now
you've you've built a team of supporters, people who are
supporting you, like you know, family and friends and stuff
like that. And I said, okay, well, what do you
guys think? Well, the former team, right, And my wife says,
you know, hey, let's make it fun. So I think
we call a witch bust to move and you know,
and they put t shirts together and I think we
(10:31):
had like Madi Gras hats and stuff on. Right. We
made it very festive.
Speaker 1 (10:34):
Right.
Speaker 2 (10:35):
And the foundation lets you set up these little mini
sites that allows you to ask folks to support financially
as you go through this, and you can begin to
breeze funds and it becomes competitive. Right.
Speaker 1 (10:48):
Something tells me that engineer Corbyn likes that.
Speaker 2 (10:50):
Oh yeah, some we are raising funds, getting folks involved
in the home we lived in was in Pennsylvania. It's
a fairly pretty large home, but it was three floors.
Third floor had a loft and my office was up there,
and it was a pretty fancy loft. But when I
contracted the CIDP, it became extremely difficult to go upstairs.
And so what I did was, you know, as we
(11:11):
raised money, I said, you know, the goal was to
get me all the way up to my office on
the loft. That's to go. Okay. So so as you
raise money, you know, I would show myself one a
couple more steps and say okay, thanks. You know, we're
at this level now, and we would continue to go
and I give you I can keep going up a
couple of give me some more I can do, and
I'm tired now, I'll help me go to rest. You know,
that got of good stuff, right, and we made it
(11:34):
fun and lighthearted. And so I go to this walking roll.
I wasn't sure where I could actually walk from the
parking lot to the monument. And my son was saying, well,
maybe Dad will drive you there. I'll drop you off
and go back, and I said, no, no, no. The
first challenge is I'm gonna walk through this monument, right.
So we get there and all these folks start coming
up to me saying how they were so inspired by
(11:55):
the video challenges. I was placing on my website and
this one kid came up to me and he was
he was fairly debilitated, but he was young. He was
I want to say, maybe ten twelve years old. Oh wow,
and he was in a powered wheelchair and had very
little use of his limbs. And it came to me
and his mother said, he didn't want to come, but
when he saw your videos, he said he's got to
(12:15):
do this. He's got to do this, and he really
wanted to meet me. Oh my god. That was so
hard to hold back the tears meeting this kid, you know,
so you know that that was the start that from
that point forward, I kind of had the bug then.
Speaker 1 (12:28):
And did you get up to your loft?
Speaker 2 (12:30):
I did? Yeah, I think we did. In fact, for
that event, we were the number one team. We raised
the most amount of money.
Speaker 1 (12:36):
Of course you were, of course, would you accept anything less?
Speaker 2 (12:40):
No, you would not. We had a great time.
Speaker 1 (12:42):
And so Carvin, how do you think a sense of
community then affects living with a condition like CIDP.
Speaker 2 (12:50):
CIDP, as you know, my team is rare. I personally
believe there's those numbers will grow as we create more
awareness and we consider the global community as we do that.
But anyway, nonetheless, here we are. It's rare, and you
feel isolated. So at first it's this weird thing. There's
not much information on and when you do find information,
it's very technical. You're feeling well debilitated, depending on how
(13:12):
far along you're in the condition, and in my case,
I was really struggling to walk. Stairs were almost impossible.
I had lost a lot of my tactile sensation in
my legs and hands and arms. And the fatigue, oh
my god, the fatigue. It's just you feel like you're
about to die. It can be very depressing and isolating,
but then you find that there's other folks like you,
and like I said, the GBS Foundation made it so
(13:35):
that you could reach out and connect in subgroups, larger groups, individually,
all of a sudden you didn't quite feel so alone.
Speaker 1 (13:44):
That's such a basic human thing right to be able
to have that sense of community and connection.
Speaker 2 (13:49):
I told you I had this one point eight percent
odds of survival for the heart condition, and those were
the deteriorating odds or over time, and ultimately you get
down to this one point eight percent over a ten
year period. So when I finally hit this ten year period,
I'm sitting in my doctor's office at Duke University. Every
time I go in the doctor's office, I ask this question,
(14:10):
has my diagnosis changed? And has my prognosis changed? It
drove them crazy and they'd say, Corbyn, no, the science
is pretty clear. You know. We talk about this every
time you come in here. Corbyna, I know, but you
know it's part of my process. One day I go
in and we're ten years into this and the doctor says,
you know, Corb. He says, I'm happy to tell you
(14:31):
that this time I can tell you we think your
prognosis has shifted. We think you're stable and likely to
stay stable, you know, for a while, and said now
that that's going to take a continue to work with you.
We've got to continue to you know, it's a whole
bunch of stuff, right, That stuff continues. So I asked him,
I said, well, why, you know, Initially, when I was
(14:52):
first sick and I was giving these odds and you
know it was so dire. I was told that the
odds of me being in that select group were impossible.
I said, so why did I squeeze this window? But
what made it's so different? He said, truthfully, Corroble, We
really don't know, except for one thing. We can tell
you this. Certainly, everything you did led you here. He
(15:13):
That's one thing, he said. But the other thing we
know for sure is that access to high quality care.
If you have access to high quality care, your odds
of overcoming your condition are much greater exponensity greater than others.
And I had positioned myself to have access thigh quality care.
Speaker 1 (15:36):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people suffering from severe autoimmune conditions, our Genics is
dedicated to shining a light on resources that support the
CIDP or chronic inflammatory demilinating polynoropathy community. Shining through CIDP
(16:01):
is a website that aims to help those living with
CIDP and their caregivers by providing reliable information, helpful tips,
and relatable stories of both trial and triumph featuring people
with CIDP like you. Shining through CIDP features real stories,
tips on emotional self care, and new ideas to help
navigate the CIDP journey. For more information, visit Shining through
(16:26):
CIDP dot com. And now back to untold Stories. Corbyn,
you are now the chair of the Board of the
GBS CIDP Foundation International. How did it feel to shift
(16:50):
from a patient to an advocate?
Speaker 2 (16:52):
Martine? I will tell you as bad as I thought.
My situation was. When you meet some people who are
in rehab centers or it can't communicate their own ventilators.
You know, their family is completely distraught because their loved
one is being swept away here by this weird illness.
It's nice to be able to offer some help, not
(17:13):
just you know, come hold your hand, but let me
come to you and give you some help. And once
I got on the board, it was a natural fit.
I mean I was able to come on and say, okay, now,
how can I help here? I think I was able
to help the board of directors kind of refocus and
so okay, now, how do we improve the lives of
(17:35):
all patients who are stricken with GBACIDP and its variance
and the challenge was how well are we doing that
for all patients? And we are the GBS CIDB Foundation International, Okay,
we are by far the global leader in this, and
so how are we doing.
Speaker 1 (17:54):
It's easy to forget just how many people worldwide are
affected by conditions like CIDP. Estimates suggests between five to
seven people per one hundred thousand are affected by CIDP globally.
So even though it's considered rare, thousands of people are
navigating this every day, often alone. That's why global connections
like the one Corbin's describing here can be life changing
(18:17):
in so many incredible ways.
Speaker 2 (18:21):
And you know, I don't want to tech it here,
but start looking at the marketing thing and you say, well,
you know, so what are we doing here? And how
well are we serving the market of patients who are
suffering with these conditions, not just here in the US
m H right, not just in comfortable western countries, but globally?
(18:42):
And how well are we leveraging capabilities not just here
in the US, not just here in the comfortable western countries,
but tapping into our resources globally. I think that helped
us shift our perspective a little bit and put us
into a different gear and perhaps to say we're doing
some phenomenal work.
Speaker 1 (19:02):
Excellent, And I mean you're talking about this from an
engineer able to sort of reformulate that, refocus that. But
there's also real connection and people and emotions there too. Right,
How has this role shaped your understanding of what community means?
Speaker 2 (19:20):
It helped me to understand we're not just talking about
patients for one thing, and we're not just talking about
the categoris to support them. We're talking about an entire
ecosystem of people who take interest in this particular condition
for whatever reason, any want to help support it. A
medical community that want to help resolve the problems, people
(19:44):
who are perhaps stricken with their illness but want to
shift their lives differently. Just because you've got a condition
doesn't mean you just stop. Yeah, right, and you're now
forever relegated sitting on the couch. Most people want their
line to go on in some fashion, right, be useful,
be viable to themselves in their family. Holloway to change that.
(20:07):
So now you realize there's a whole ecosystem out there
to help move all that forward. From something as simple
as maybe I can't go to work anymore. But I
can help prepare meals, or I can help in my garden,
or I can help support my grandkids some kind of
way or another. So when we talk community, we're not
(20:27):
talking about simply just patients. We're talking about an entire
ecosystem surrounding this condition, including of course the patients at
the center that are all trying to live life in
the moment, live life for the future, but then also
create a new future. When you think about that community,
(20:48):
it expands, it becomes a huge opportunity to get various
elements involved.
Speaker 1 (20:55):
This is what makes Corbin's story so powerful. It shows
how finding community isn't just about shared experiences. It's about
creating momentum together. Every person, every voice, every connection has
the power to change the world for everyone living with
these conditions. Yeah. And also yeah, like you said, you
(21:18):
were already in a community of all these different stakeholders
and actors, and that doesn't change, it maybe shifts. Right
as you have a condition like this.
Speaker 2 (21:28):
We have these hill days right where we go to Washington,
d C. And we advocate on the hill, try to
one way another support our situation. And I was on
the hill for this particular day with some other board members,
and we're meeting with various senators and congress folks, and
I started breaking down the research that's done here in
the state, the pharmaceutical companies that are processing medications here
(21:48):
in the state specifically for this condition, the plasma collection
centers that are here in the state, the plasma collection
centers that are supporting the military operations here at the state,
the universities and the researchers that are involved in versus
here in the state. And I began to break down
to help you understand the community that is around this condition.
Speaker 1 (22:07):
It's not just the people who are affected by it.
Speaker 2 (22:09):
No, this condition is generating a whole lot of income
for the state as well. Let's look at it from
a broader perspective. That was pretty opening for him.
Speaker 1 (22:17):
You're like, yeah, remember me, M Corbyn, when dealing with
the condition like CIDP, as we know, it's very easy
to get lost in sort of medical jargon and appointments.
Are there any specific moments where having this strong community
allowed you to lean on each other, to share knowledge,
to better understand your journey, or even to support self advocacy.
Speaker 2 (22:40):
Oh yeah, absolutely, certainly. Every time I have an event
We have a series of symposiums every two years and
hundred of people to show up, and it's a hot
bed for folks sharing with each other, what challenges I'm facing,
what's working for me, what's not working for me? Family
members meeting with each other, not work with my loved one?
What options can we bring to the table, you know?
(23:02):
But not just some of those places in our coffee chats.
One thing I would like that the Foundation did. We
did a great pivot during the pandemic and we leveraged
pretty significantly technology. Oh my god, what we can do
with technology is amazing. We were able to have coffee chats.
You know. So there's a men group, men's group that meets,
there's a children's group that meets, the teen teen group,
(23:25):
there's women's groups. Is regional groups, is local groups? Or
Global Medical Advisory Board, which I'm happy to say we've
got a who's who board of physicians and researchers that
avail themselves to our community for answering questions. We have
a series I think we call it Ask the Specialists.
There have been others. We open up to the community
at large, and we'll pay for folks that come and
(23:46):
participate up on the hill and there is nothing better
than to go visit your congress person, which, by the way, folks,
everybody can do that. Yeah, go visit your congress person
and advocate for what your needs are, what your community's
needs are. It is so.
Speaker 1 (24:04):
Empower absolutely And so Corbyn, what does strength mean to
you now after everything you've faced?
Speaker 2 (24:12):
Well, that's a great question. In the past I would
have said strength is power, right, But I believe now
strength is the ability to empower rather than than to
accumulate power to execute. I think strength is magnified when
you can empower others and by doing so, your strength
(24:34):
is magnified. And if you could help others learn to
empower others, now you've got an exponentially magnified strength. So
to me, I think strength now is empowerment.
Speaker 1 (24:44):
How do you approach choices in your journey that involve
tough trade offs or uncertainty, like, for example, how did
you talk about the uncertainty with your wife and kids.
Speaker 2 (24:55):
Oh, there was some tough discussions around some of that.
There was a particular surgery that Penn had post that
would help me rapidly get some weight off because at
that point that gained a lot of weight and within
active and all that, and the heart accumulates a lot
of fluid. And so anyway, the surgeon came to me
and said, I want to try to do something with you,
and I think we can rapidly get some weight off
(25:17):
of you. Take somebody's pounds off your heart doesn't have
to work as hard. But it was very risky. I see,
it was extremely risky. And in fact, what he told
me was, he says, look, more than likely your heart's
going to stop somewhere in the procedure. He said, I
promise you, we will bring you back. If I promise you,
we'll bring you back. And so as part of the
(25:38):
surgery in an adjacent room, it was a surgical team
prepared for open heart surgery to bring me back. And
so I had to have the conversation with my family.
So one example, and we've had many of those challenging
conversations along the way. Yeah.
Speaker 1 (25:53):
Yeah, And to recognize that these are trade offs but
obviously worth it at this point. Yes, helps you stay
mentally and emotionally strong while still advocating for those in
the community who are just beginning their journey.
Speaker 2 (26:07):
You know, success is very encouraging, right, and so as
to begin to accumulate the years behind you. It helps
you just stay strong and you have your days. Have
my days, oh, my goodness, certainly have my days. You're
telling you doing battle.
Speaker 1 (26:19):
With it, right, Yeah, You're never done.
Speaker 2 (26:21):
You're never done, never never never never never done, especially
in our condition, like you're down physically, down mentally. It
takes time out of your day. But there's strength in numbers.
There's hope and success and God's good faith. He's been
better to me than I've been to myself. Okay, spread
that way. That keeps me going.
Speaker 1 (26:40):
And as you said before, too, strength isn't empowering others. Yes,
so it comes back to you.
Speaker 2 (26:45):
Yes, this is good work. Look, I solved a lot
of problems before I get sick. Engineering lines. Oh, we
did some cool stuff. But today that stuff is gone,
most of us gone. I mean, you know, they built
off of it, you know, and that's led to something else,
led something else, you know, And it's cool stuff now.
And you know, if I talk to the young engineer city,
they'll go, oh, Jane, okay, that's cool. You know. But
(27:06):
back when we were doing that, it was like, wow,
that was exciting. Stuff. Right, But when you work with
people and you're helping people, and you're helping them resolve
their problems, and you're helping them to get past a
major milestone in their lives, it's almost like you've interjected
DNA into their lives, because what you've done for them
lives on m It's not like that engineering problem we solved,
(27:30):
you know, twenty years ago, when you work with people
and you affect that kid at the Washington Monument. I
haven't seen him since, right, but his life shifted for
a moment. His family's life shifted for a moment, and
where that took them, and I don't know, but I
got to imagine with someplace positive and wonderful.
Speaker 1 (27:48):
And you've never forgotten it, never forgot.
Speaker 2 (27:51):
I never forgot.
Speaker 1 (27:51):
No, Corbyn, thank you so much for this wisdom and
insight and your engineering mind that you've applied to this
really important work. And I just thank you so much
for your time today and appreciate you well.
Speaker 2 (28:07):
Thank you, Martine, thank you for having me, Thank you
for bringing light to this situation. The more light we
bring to this, the more folks we're going to be
able to help. So thank you for having.
Speaker 1 (28:17):
Me I'm really grateful to Corbyn for sharing his story
so openly today, and for showing how much power there
is in finding your people and standing up for yourself
even when it feels impossible, whether you're living with cidp
MG or another rare condition, supporting someone who is, or
(28:39):
just here to listen and learn. I hope Corbyn's story
leaves you feeling a little more connected, hopeful, and a
lot less alone. Until next time, take care of yourselves.
Untold Stories Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix, and
(29:02):
hosted by me Martine Hackett. Our executive producer is Yvonne Shehan.
Our producer is Leah Sutherland. This episode was written and
produced by Diana Davis. Post production for this season is
by Tom Sullivan and Paul Viedeleans of Audiography
Hello, and welcome back. This season, we're exploring what it
really means to find strength, resilience, and to speak up
for yourself when navigating life with a rare autoimmune condition
like MG or CIDP. For people living with these conditions,
that can feel like a lonely road. But today's guest,
Corbin Whittington, reminds us how powerful it can be to
(00:29):
find connection and strength within the rare disease community. Corbyn's
a global strategist, engineer and a passionate advocate, living with
both dilated cardiomyopathy and CIDP. At one point, doctors gave
him less than a two percent chance of survival. But
instead of backing down, Corbin approached his conditions like an engineer,
(00:50):
thinking through every variable that could improve his quality of life.
One major comfort for Corbin was community support. In the
face of his ci IDP diagnosis, Corbyn found the GBS
CIDP Foundation. Engaging with other members of that community helped
him feel less alone. He later joined the board of
the foundation to connect with others with GBS and CIDP.
(01:13):
Now leading the community support he found so valuable himself.
Let's meet him now, Hi, Corbyn, it's so nice to
meet you. Thank you so much for joining us today.
Speaker 2 (01:23):
Wello Martin, thank you for having me today. It's nice
to be here and I'm looking forward to our conversation.
Speaker 1 (01:29):
Corvin, you said that doctors gave you a one point
eight percent chance to live, but that you did not
take that as final. How did you hold on to
hope when nearly every expert said there was none.
Speaker 2 (01:45):
So, of course, that was probably the most significant challenge
that I ever faced in my life. But it wasn't
the only challenge, and it wasn't the first time I
got told had a slim chance of survival. I'm a
faithful guy, and I believe you can talk about faith
right and then you can put it to work. And
so that was a matter of trying to put it
to work. And it is another thing too, Martin. I
(02:07):
was at the time a thriving executive engineer at Letting
Engineers all over the world, and we were solving some
very complex problems, and I kind of knew that technology
was advancing really exponentially, and so I had a clue
that the information they were giving me was based upon
past data, and if I can hang on, there were
(02:29):
things coming that would probably shift that, so they gave
me something to cling to.
Speaker 1 (02:36):
Well, Corbyn's describing here really hits home for me and
I'm sure many of our listeners. It takes a rare
kind of determination to sit in that much uncertainty, to
hold on knowing the odds and still look for those
small windows of hope. Yeah. I mean it sounds like
you know, your knowledge based on your expertise, made you
(02:58):
hopeful that you knew something was on the way that
could help you.
Speaker 2 (03:02):
There's a slim window of opportunity, so the question got
to be what will it take to make it? What
will it take to be in that window?
Speaker 1 (03:11):
Yeah? And you also received care from one key cardiologist.
What role did that play?
Speaker 2 (03:20):
Oh? She was awesome. She was a world renowned, highly
recognized cardiologist. Since then, I've been treated by multiple cardiologists,
and to this very day, when they look back at
my records and they see her name on there as
the initial cardiologist, they'll go wow. I was fortunate enough
that when I changed hospitals at the time, this was
(03:42):
the third hospital looking for expertise. Kind of one of
the things I knew, and this is again from that
old engineering background, I knew that there's a difference in capabilities.
So I saw the best, and I was fortunate enough
that this particular doctor, she she took notice of my
case and thought it was very interesting. She just said,
(04:04):
there were things here that didn't make sense to her.
She sees all the data, she saw all the testing.
She's going to runt some more testing herself, but there
were things that make sense to her, and she wanted
to take that on, which gave me quite a bit
of confidence because I said, Okay, here's somebody I can
work with.
Speaker 1 (04:19):
Yeah. I mean, you mentioned before how you approached your
diagnosis like an engineering problem, because you're an engineer. Could
you tell us more about that mindset and how it
influenced your treatment journey.
Speaker 2 (04:34):
Part of my specialty was solving fairly complex problems. I
had studied statistical engineering, and I got certifications and some
pretty interesting applications, and had used that most of my
career solving some really deeply entrenched complex problems. And so
when I got this diagnosis, you know, I thought myself, well,
(04:55):
wait a minute, this is just another problem. But rather
than just say that, it's okay. But if I say
that and I mean it, then what do I need
to do, right, So, how do you go about solving
this thing any other engineering problems? What's my goal here
with milestones? What I'm looking for?
Speaker 1 (05:10):
Yeah, so you're the chief engineer. You have this agency
that you are putting yourself in the center of this,
you know, fantastic problem to solve, Corbyn, Was there a
specific moment that gave you hope during this search for answers?
Speaker 2 (05:26):
There were a couple of different moments. Only never really
stood out was when I was diagnosed with CIDB, and
it gave me hope because before that there were all
these unknowns, Like my body was just falling apart, I see,
and there were all these unknowns, and like I said,
from an engineering perspective, you know, you're trying to you know,
(05:46):
you got a column of unknowns and you got you know, knowns, right,
and you're trying to move things through this matrix, so
you reduce those amount of unknowns into you know, known
things that you can manage. Right. So along comes this
diagnosed the CIDP. At first glance you go, wow, you know,
now you've got two complicated diagnosis, right, But in my
(06:07):
mind I thought, yeah, but there's not much known about
either one maybe there's a thread that we can talk on,
and as it worked out, there was some indirect benefit.
Speaker 1 (06:18):
Interesting and so you described your experience as both terrifying
and deeply human. Can you talk more about what that
means to you.
Speaker 2 (06:29):
We all sail through life, right, waking up every day
with expectations anticipation of what your day is going to
be like. Right, then all of a sudden, one day
you're smacked in the head with a reality that's going
to challenge you. You know almost every facet physically, mentally, socially, financially,
and you didn't know that world existed. So all of
(06:53):
a sudden you find yourself vulnerable as a human. Yeah,
and it's terrifying to know that. Wait a minute, there's
things outside of my control. There's a whole reality here,
outside of my control that wasn't even on my radar.
But here I am in the stick of it. So
now what happens now.
Speaker 1 (07:12):
I understand, like you said, you're stepping into a whole
other side of life that makes us really recognize how
human we are in these bodies.
Speaker 2 (07:21):
Yeah, completely derailsy. In the months leading up to illness,
my wife and I were doing really well. We were
looking for a beach home. You know, we were looking
at the future, talking about what's retirement look like at
this amount of money, of that amount of money, with
these kind of assets, and maybe retirement was just like
ten years down the road. To said, okay, you know,
things are looking pretty good. And you know, my oldest
(07:43):
son and graduated college. The youngest was still in college,
but only a couple of years away, and we were like, hey,
this is what we've been working for. It's our time, right,
it's our time. Then all of us sudden, the rug
it's snatched out from under you.
Speaker 1 (07:59):
Yeah, and something you never even knew existed in the world.
And Corbyn, when you were first diagnosed, where did you
look to for support?
Speaker 2 (08:10):
You know, the physicians didn't have a lot of information.
I think they had to me a little pamphlet or
something that kind of had pictures, don't describe what it is.
But it was a real big mystery. So you know,
I do, like most people do, you kind of go
to Google, right, you know, sit there, Okay, well we'll
do that, and you get inundated with all this stuff.
(08:30):
But my wife did fine. She was one hundred percent
in this as well, right, so she did find the
GBSCIDP Foundation, and they had a website. It wasn't a
bunch of oh wolle was me. It was a site
that gave you some empowerment. So you go, oh, okay,
here's information, here's ways I can get involved, here's something
(08:51):
I can do. Right. As you gain confidence in being
involved in helping to solve your own problem.
Speaker 1 (08:58):
You can really hear it here. How in just moments,
Corbin realized that finding community wasn't just about information, It
was about belonging and realizing that you don't have to
face this alone. You can tell He felt the impact
of that almost immediately, just from knowing it existed. Excellent
(09:18):
and were you able to connect with other folks who
understood what you were going through?
Speaker 2 (09:23):
Oh yes, that's kind of the entry level of getting
involved the foundation. As a patient or as a caregiver.
You find community, right, so you get on here any
videos of other people talking about their stories. The biggest
thing for me was this event they have called a
walk and roll. The role part befers is some people
can't walk, so they're in devices and we'll chair and
so forth. It's an organized event, often around chapters in
(09:46):
a particular geographic area. Okay, And so for me, there
was gonna be a walk and roll held in Washington, DC,
and it was going to be at the you know,
the Washington Monument. Right. I looked at that and said, ooh,
I want to go. So you click on this thing
how you sign up, and it says now you can
formulate a team. I said, oh, I can get you know,
(10:09):
some of these folks that are you know, by now
you've you've built a team of supporters, people who are
supporting you, like you know, family and friends and stuff
like that. And I said, okay, well, what do you
guys think? Well, the former team, right, And my wife says,
you know, hey, let's make it fun. So I think
we call a witch bust to move and you know,
and they put t shirts together and I think we
(10:31):
had like Madi Gras hats and stuff on. Right. We
made it very festive.
Speaker 1 (10:34):
Right.
Speaker 2 (10:35):
And the foundation lets you set up these little mini
sites that allows you to ask folks to support financially
as you go through this, and you can begin to
breeze funds and it becomes competitive. Right.
Speaker 1 (10:48):
Something tells me that engineer Corbyn likes that.
Speaker 2 (10:50):
Oh yeah, some we are raising funds, getting folks involved
in the home we lived in was in Pennsylvania. It's
a fairly pretty large home, but it was three floors.
Third floor had a loft and my office was up there,
and it was a pretty fancy loft. But when I
contracted the CIDP, it became extremely difficult to go upstairs.
And so what I did was, you know, as we
(11:11):
raised money, I said, you know, the goal was to
get me all the way up to my office on
the loft. That's to go. Okay. So so as you
raise money, you know, I would show myself one a
couple more steps and say okay, thanks. You know, we're
at this level now, and we would continue to go
and I give you I can keep going up a
couple of give me some more I can do, and
I'm tired now, I'll help me go to rest. You know,
that got of good stuff, right, and we made it
(11:34):
fun and lighthearted. And so I go to this walking roll.
I wasn't sure where I could actually walk from the
parking lot to the monument. And my son was saying, well,
maybe Dad will drive you there. I'll drop you off
and go back, and I said, no, no, no. The
first challenge is I'm gonna walk through this monument, right.
So we get there and all these folks start coming
up to me saying how they were so inspired by
(11:55):
the video challenges. I was placing on my website and
this one kid came up to me and he was
he was fairly debilitated, but he was young. He was
I want to say, maybe ten twelve years old. Oh wow,
and he was in a powered wheelchair and had very
little use of his limbs. And it came to me
and his mother said, he didn't want to come, but
when he saw your videos, he said he's got to
(12:15):
do this. He's got to do this, and he really
wanted to meet me. Oh my god. That was so
hard to hold back the tears meeting this kid, you know,
so you know that that was the start that from
that point forward, I kind of had the bug then.
Speaker 1 (12:28):
And did you get up to your loft?
Speaker 2 (12:30):
I did? Yeah, I think we did. In fact, for
that event, we were the number one team. We raised
the most amount of money.
Speaker 1 (12:36):
Of course you were, of course, would you accept anything less?
Speaker 2 (12:40):
No, you would not. We had a great time.
Speaker 1 (12:42):
And so Carvin, how do you think a sense of
community then affects living with a condition like CIDP.
Speaker 2 (12:50):
CIDP, as you know, my team is rare. I personally
believe there's those numbers will grow as we create more
awareness and we consider the global community as we do that.
But anyway, nonetheless, here we are. It's rare, and you
feel isolated. So at first it's this weird thing. There's
not much information on and when you do find information,
it's very technical. You're feeling well debilitated, depending on how
(13:12):
far along you're in the condition, and in my case,
I was really struggling to walk. Stairs were almost impossible.
I had lost a lot of my tactile sensation in
my legs and hands and arms. And the fatigue, oh
my god, the fatigue. It's just you feel like you're
about to die. It can be very depressing and isolating,
but then you find that there's other folks like you,
and like I said, the GBS Foundation made it so
(13:35):
that you could reach out and connect in subgroups, larger groups, individually,
all of a sudden you didn't quite feel so alone.
Speaker 1 (13:44):
That's such a basic human thing right to be able
to have that sense of community and connection.
Speaker 2 (13:49):
I told you I had this one point eight percent
odds of survival for the heart condition, and those were
the deteriorating odds or over time, and ultimately you get
down to this one point eight percent over a ten
year period. So when I finally hit this ten year period,
I'm sitting in my doctor's office at Duke University. Every
time I go in the doctor's office, I ask this question,
(14:10):
has my diagnosis changed? And has my prognosis changed? It
drove them crazy and they'd say, Corbyn, no, the science
is pretty clear. You know. We talk about this every
time you come in here. Corbyna, I know, but you
know it's part of my process. One day I go
in and we're ten years into this and the doctor says,
you know, Corb. He says, I'm happy to tell you
(14:31):
that this time I can tell you we think your
prognosis has shifted. We think you're stable and likely to
stay stable, you know, for a while, and said now
that that's going to take a continue to work with you.
We've got to continue to you know, it's a whole
bunch of stuff, right, That stuff continues. So I asked him,
I said, well, why, you know, Initially, when I was
(14:52):
first sick and I was giving these odds and you
know it was so dire. I was told that the
odds of me being in that select group were impossible.
I said, so why did I squeeze this window? But
what made it's so different? He said, truthfully, Corroble, We
really don't know, except for one thing. We can tell
you this. Certainly, everything you did led you here. He
(15:13):
That's one thing, he said. But the other thing we
know for sure is that access to high quality care.
If you have access to high quality care, your odds
of overcoming your condition are much greater exponensity greater than others.
And I had positioned myself to have access thigh quality care.
Speaker 1 (15:36):
We'll be back with more untold stories after a quick break.
As a global immunology company committed to improving the lives
of people suffering from severe autoimmune conditions, our Genics is
dedicated to shining a light on resources that support the
CIDP or chronic inflammatory demilinating polynoropathy community. Shining through CIDP
(16:01):
is a website that aims to help those living with
CIDP and their caregivers by providing reliable information, helpful tips,
and relatable stories of both trial and triumph featuring people
with CIDP like you. Shining through CIDP features real stories,
tips on emotional self care, and new ideas to help
navigate the CIDP journey. For more information, visit Shining through
(16:26):
CIDP dot com. And now back to untold Stories. Corbyn,
you are now the chair of the Board of the
GBS CIDP Foundation International. How did it feel to shift
(16:50):
from a patient to an advocate?
Speaker 2 (16:52):
Martine? I will tell you as bad as I thought.
My situation was. When you meet some people who are
in rehab centers or it can't communicate their own ventilators.
You know, their family is completely distraught because their loved
one is being swept away here by this weird illness.
It's nice to be able to offer some help, not
(17:13):
just you know, come hold your hand, but let me
come to you and give you some help. And once
I got on the board, it was a natural fit.
I mean I was able to come on and say, okay, now,
how can I help here? I think I was able
to help the board of directors kind of refocus and
so okay, now, how do we improve the lives of
(17:35):
all patients who are stricken with GBACIDP and its variance
and the challenge was how well are we doing that
for all patients? And we are the GBS CIDB Foundation International, Okay,
we are by far the global leader in this, and
so how are we doing.
Speaker 1 (17:54):
It's easy to forget just how many people worldwide are
affected by conditions like CIDP. Estimates suggests between five to
seven people per one hundred thousand are affected by CIDP globally.
So even though it's considered rare, thousands of people are
navigating this every day, often alone. That's why global connections
like the one Corbin's describing here can be life changing
(18:17):
in so many incredible ways.
Speaker 2 (18:21):
And you know, I don't want to tech it here,
but start looking at the marketing thing and you say, well,
you know, so what are we doing here? And how
well are we serving the market of patients who are
suffering with these conditions, not just here in the US
m H right, not just in comfortable western countries, but globally?
(18:42):
And how well are we leveraging capabilities not just here
in the US, not just here in the comfortable western countries,
but tapping into our resources globally. I think that helped
us shift our perspective a little bit and put us
into a different gear and perhaps to say we're doing
some phenomenal work.
Speaker 1 (19:02):
Excellent, And I mean you're talking about this from an
engineer able to sort of reformulate that, refocus that. But
there's also real connection and people and emotions there too. Right,
How has this role shaped your understanding of what community means?
Speaker 2 (19:20):
It helped me to understand we're not just talking about
patients for one thing, and we're not just talking about
the categoris to support them. We're talking about an entire
ecosystem of people who take interest in this particular condition
for whatever reason, any want to help support it. A
medical community that want to help resolve the problems, people
(19:44):
who are perhaps stricken with their illness but want to
shift their lives differently. Just because you've got a condition
doesn't mean you just stop. Yeah, right, and you're now
forever relegated sitting on the couch. Most people want their
line to go on in some fashion, right, be useful,
be viable to themselves in their family. Holloway to change that.
(20:07):
So now you realize there's a whole ecosystem out there
to help move all that forward. From something as simple
as maybe I can't go to work anymore. But I
can help prepare meals, or I can help in my garden,
or I can help support my grandkids some kind of
way or another. So when we talk community, we're not
(20:27):
talking about simply just patients. We're talking about an entire
ecosystem surrounding this condition, including of course the patients at
the center that are all trying to live life in
the moment, live life for the future, but then also
create a new future. When you think about that community,
(20:48):
it expands, it becomes a huge opportunity to get various
elements involved.
Speaker 1 (20:55):
This is what makes Corbin's story so powerful. It shows
how finding community isn't just about shared experiences. It's about
creating momentum together. Every person, every voice, every connection has
the power to change the world for everyone living with
these conditions. Yeah. And also yeah, like you said, you
(21:18):
were already in a community of all these different stakeholders
and actors, and that doesn't change, it maybe shifts. Right
as you have a condition like this.
Speaker 2 (21:28):
We have these hill days right where we go to Washington,
d C. And we advocate on the hill, try to
one way another support our situation. And I was on
the hill for this particular day with some other board members,
and we're meeting with various senators and congress folks, and
I started breaking down the research that's done here in
the state, the pharmaceutical companies that are processing medications here
(21:48):
in the state specifically for this condition, the plasma collection
centers that are here in the state, the plasma collection
centers that are supporting the military operations here at the state,
the universities and the researchers that are involved in versus
here in the state. And I began to break down
to help you understand the community that is around this condition.
Speaker 1 (22:07):
It's not just the people who are affected by it.
Speaker 2 (22:09):
No, this condition is generating a whole lot of income
for the state as well. Let's look at it from
a broader perspective. That was pretty opening for him.
Speaker 1 (22:17):
You're like, yeah, remember me, M Corbyn, when dealing with
the condition like CIDP, as we know, it's very easy
to get lost in sort of medical jargon and appointments.
Are there any specific moments where having this strong community
allowed you to lean on each other, to share knowledge,
to better understand your journey, or even to support self advocacy.
Speaker 2 (22:40):
Oh yeah, absolutely, certainly. Every time I have an event
We have a series of symposiums every two years and
hundred of people to show up, and it's a hot
bed for folks sharing with each other, what challenges I'm facing,
what's working for me, what's not working for me? Family
members meeting with each other, not work with my loved one?
What options can we bring to the table, you know?
(23:02):
But not just some of those places in our coffee chats.
One thing I would like that the Foundation did. We
did a great pivot during the pandemic and we leveraged
pretty significantly technology. Oh my god, what we can do
with technology is amazing. We were able to have coffee chats.
You know. So there's a men group, men's group that meets,
there's a children's group that meets, the teen teen group,
(23:25):
there's women's groups. Is regional groups, is local groups? Or
Global Medical Advisory Board, which I'm happy to say we've
got a who's who board of physicians and researchers that
avail themselves to our community for answering questions. We have
a series I think we call it Ask the Specialists.
There have been others. We open up to the community
at large, and we'll pay for folks that come and
(23:46):
participate up on the hill and there is nothing better
than to go visit your congress person, which, by the way, folks,
everybody can do that. Yeah, go visit your congress person
and advocate for what your needs are, what your community's
needs are. It is so.
Speaker 1 (24:04):
Empower absolutely And so Corbyn, what does strength mean to
you now after everything you've faced?
Speaker 2 (24:12):
Well, that's a great question. In the past I would
have said strength is power, right, But I believe now
strength is the ability to empower rather than than to
accumulate power to execute. I think strength is magnified when
you can empower others and by doing so, your strength
(24:34):
is magnified. And if you could help others learn to
empower others, now you've got an exponentially magnified strength. So
to me, I think strength now is empowerment.
Speaker 1 (24:44):
How do you approach choices in your journey that involve
tough trade offs or uncertainty, like, for example, how did
you talk about the uncertainty with your wife and kids.
Speaker 2 (24:55):
Oh, there was some tough discussions around some of that.
There was a particular surgery that Penn had post that
would help me rapidly get some weight off because at
that point that gained a lot of weight and within
active and all that, and the heart accumulates a lot
of fluid. And so anyway, the surgeon came to me
and said, I want to try to do something with you,
and I think we can rapidly get some weight off
(25:17):
of you. Take somebody's pounds off your heart doesn't have
to work as hard. But it was very risky. I see,
it was extremely risky. And in fact, what he told
me was, he says, look, more than likely your heart's
going to stop somewhere in the procedure. He said, I
promise you, we will bring you back. If I promise you,
we'll bring you back. And so as part of the
(25:38):
surgery in an adjacent room, it was a surgical team
prepared for open heart surgery to bring me back. And
so I had to have the conversation with my family.
So one example, and we've had many of those challenging
conversations along the way. Yeah.
Speaker 1 (25:53):
Yeah, And to recognize that these are trade offs but
obviously worth it at this point. Yes, helps you stay
mentally and emotionally strong while still advocating for those in
the community who are just beginning their journey.
Speaker 2 (26:07):
You know, success is very encouraging, right, and so as
to begin to accumulate the years behind you. It helps
you just stay strong and you have your days. Have
my days, oh, my goodness, certainly have my days. You're
telling you doing battle.
Speaker 1 (26:19):
With it, right, Yeah, You're never done.
Speaker 2 (26:21):
You're never done, never never never never never done, especially
in our condition, like you're down physically, down mentally. It
takes time out of your day. But there's strength in numbers.
There's hope and success and God's good faith. He's been
better to me than I've been to myself. Okay, spread
that way. That keeps me going.
Speaker 1 (26:40):
And as you said before, too, strength isn't empowering others. Yes,
so it comes back to you.
Speaker 2 (26:45):
Yes, this is good work. Look, I solved a lot
of problems before I get sick. Engineering lines. Oh, we
did some cool stuff. But today that stuff is gone,
most of us gone. I mean, you know, they built
off of it, you know, and that's led to something else,
led something else, you know, And it's cool stuff now.
And you know, if I talk to the young engineer city,
they'll go, oh, Jane, okay, that's cool. You know. But
(27:06):
back when we were doing that, it was like, wow,
that was exciting. Stuff. Right, But when you work with
people and you're helping people, and you're helping them resolve
their problems, and you're helping them to get past a
major milestone in their lives, it's almost like you've interjected
DNA into their lives, because what you've done for them
lives on m It's not like that engineering problem we solved,
(27:30):
you know, twenty years ago, when you work with people
and you affect that kid at the Washington Monument. I
haven't seen him since, right, but his life shifted for
a moment. His family's life shifted for a moment, and
where that took them, and I don't know, but I
got to imagine with someplace positive and wonderful.
Speaker 1 (27:48):
And you've never forgotten it, never forgot.
Speaker 2 (27:51):
I never forgot.
Speaker 1 (27:51):
No, Corbyn, thank you so much for this wisdom and
insight and your engineering mind that you've applied to this
really important work. And I just thank you so much
for your time today and appreciate you well.
Speaker 2 (28:07):
Thank you, Martine, thank you for having me, Thank you
for bringing light to this situation. The more light we
bring to this, the more folks we're going to be
able to help. So thank you for having.
Speaker 1 (28:17):
Me I'm really grateful to Corbyn for sharing his story
so openly today, and for showing how much power there
is in finding your people and standing up for yourself
even when it feels impossible, whether you're living with cidp
MG or another rare condition, supporting someone who is, or
(28:39):
just here to listen and learn. I hope Corbyn's story
leaves you feeling a little more connected, hopeful, and a
lot less alone. Until next time, take care of yourselves.
Untold Stories Life with a Severe Autoimmune Condition is produced
by Ruby's Studio from iHeartMedia in partnership with Argenix, and
(29:02):
hosted by me Martine Hackett. Our executive producer is Yvonne Shehan.
Our producer is Leah Sutherland. This episode was written and
produced by Diana Davis. Post production for this season is
by Tom Sullivan and Paul Viedeleans of Audiography
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