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In this special Podcasthon episode, we join a global initiative through Podcasthon.org, using podcasting to support charities and nonprofits through meaningful storytelling, and I’m joined by the PMC cast and crew as we each share causes that matter deeply to us. I’m also joined by my best friend Jonah Berger, who shares his experience living with CMT (Charcot-Marie-Tooth disease) and the work being done toward a cure.
From honoring loved ones to sharing personal health journeys, we highlight organizations like the Glioblastoma Foundation, Islamic Relief, CMTA, Stand Up To Cancer, and MSAA. Along the way, we also weave in podcasting insights, reminding ourselves that our shows are more than content. They’re a way to create connection, raise awareness, and make a real impact.
Episode Highlights:
[00:05] Opening and introduction to Podcasthon and today’s global initiative
[02:21] What Podcasthon is and how podcasters are participating worldwide
[04:01] How the PMC community is supporting charities through a shared page
[05:00] Wheel of Jargon: Understanding IAB and why it matters
[11:00] Ralph shares a personal story and supports the Glioblastoma Foundation
[20:00] A reminder to honor loved ones and take meaningful action
[21:03] Junaid highlights Islamic Relief and advocacy organizations
[26:09] Wheel of Jargon: What ID3 tags are and why they matter
[27:42] Marc introduces CMT and welcomes guest Jonah Berger
[30:00] Living with CMT and how it shapes daily life
[34:10] Progress toward a cure and the power of collaborative research
[41:48] Camp Footprint and building community for kids with CMT
[42:46] D.R. shares her husband’s cancer journey and Stand Up To Cancer
[48:45] Tim shares his MS journey and support for MSAA
[50:00] The impact of sharing stories and supporting causes through podcasting
Links & Resources:
Learn more about Podcastthon: https://podcasthon.org
Here are the charities the team is supporting for Podcasthon: https://www.podcastingmorningchat.com/charity/
Jonah Berger’s book: He Walks Like a Cowboy https://www.amazon.com/He-Walks-Like-Cowboy-Disability/dp/0595471684/
Jonah's Presentation at his local middle school (courtesy of FOX 47):
https://www.facebook.com/reel/1326849999266221
Junaid's Book: Podcast Relationship Management
Junaid's Podcast 'Operating System'
Multiple Sclerosis Association of America (MSAA):
The Podcasting Morning Chat:
www.podcastingmorningchat.com
Meet the PMC Cast and Crew:
https://podcastingmorningchat.com/people
Join The Empowered Podcasting Facebook Group:
www.facebook.com/groups/empoweredpodcasting
Book A Free Call With Me:
https://calendly.com/ironickmedia/freestrategycall
Application To Submit Your Show For Evaluation:
https://podcastingmorningchat.com/eval
Join us Mondays at 7 AM ET for the Obsession Worthy Podcasts:http://podcastingmorningchat.com/owp/
Remember to rate, follow, share, and review our podcast. Your support helps us grow and bring valuable content to the podcasting community.
Join us LIVE every weekday morning at 7 am ET (US) on Clubhouse: https://podcastingmorningchat.com/clubhouse
EPC3 Speaker Application: https://empoweredpodcasting.com/speakers
Podcasters Happy Hour (March 26, 5:30pm EDT, North Bethesda Maryland):
https://podnews.net/event/podcaster-visibility-meetup-in-the-dmv
Live on YouTube: http://podcastingmorningchat.com/joinus
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Please note that some links may be affiliate links, which support the hosts of the PMC. Thank you!
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Good morning, podcasting morning chat. Today is Thursday, March 19th, 2026, and today
it's podcast thon, a worldwide initiative celebrating charities and nonprofits around
the world through podcasting as each of us shares who are spotlighting and the personal
story behind it. So if you're listening live on Clubhouse
at the share button bottom left hand side of the screen and share it however Clubhouse
lets you and if you're catching us via podcast, YouTube, LinkedIn, etc. Please share this
with the fellow podcaster and now give us about 30 seconds and we'll get things rolling.
Thanks for being here.
The podcasting morning chat is powered by ironic media helping podcasters launch, polish
and grow great shows and by content creators accountant helping creators build real business
behind their content.
Good morning again podcasting morning chat. Thank you so much for being here. I am your host
Mark Ronik and currently on stage with me we have my co hosts D. R. F. A. Ralph E. Step.
We also have Janine and tied a K. A. Nicky joining us from the audience hour regulars here
on stage. Awesome to have you guys there and I know it's usually a much longer list quite
frankly. I don't know where the whole team is today, but I know that BC Babbles will be
joining us a little bit later. He gave me the heads up this morning that he was going
to be a little late and we'll find out where the rest of the crew is momentarily, but
I am really excited to get into today's topic and I'll first share about that and then
we're going to talk a little podcasting for a moment. But first, like I said, today
we're joining this global podcast movement that encourages hosts to use their platform
to shine a light on a cause that they care about podcast thon.org by the way spelled
with one T is about convincing as many hosts as possible to dedicate one episode of their
show to a charity of their choice and to release these episodes simultaneously in a coordinated
effort this very week creating a massive and international wave of inspiring content.
The objective to raise awareness for a huge number of charities worldwide. So you can
learn more about podcast thon. Check them out at podcast thon.org. Like I said, one
T in podcast thon, even though it should be two, but it's one T. So today, what we'll
do is I'm going to go around the room and if you are listening in the audience, John,
Mike, Dave, Austin, Tim, come up and share a nonprofit, a charity, an organization that
you support or would like others to support. I've got to believe that even if there isn't
one that's maybe a go to for yours, you could probably think of one and come up and share
it and share why you chose it. But let's be a part of this awesome initiative. I think
there's somewhere around 3000 different podcasts that are actually participating in this.
So I really want us to do our part as well and really shine. And I think that's the
beauty of this show is that we have so many voices that we can do something special
like this together. Yes, Ralph, you had something go ahead.
Yeah, I just wanted to let everybody know that if you want to support one of the charities
we're going to be talking about today, we actually have built a website part of our website
and you can get that at podcasting morning chat dot com slash charity. And if you want
to send me over a link to your charity, we'll make sure we put it up on the website.
But again, that's podcasting morning chat dot com slash charity. Thank you, Ralph, for
putting that together. And thank you, Tim, for joining us on stage as well. Love that.
Okay. So before we dig into that, look, we're a show about podcasting. It feels weird
to me if we don't talk at all about podcasting in any way, shape or form, even though I know
we're doing something special today. And side note, by the way, stick around fingers
crossed, 7 30 ish, my best friend, Jonah Berger is joining us. Jonah has a disease called
CMT, Sharko Marie Tooth. And I am supporting the CMTA who raises money and awareness to
cure CMT. But first, you heard it that wheel of jargon. We also have had a wheel of topics
here in the past, the wheel of jargon. I'm going to ask I'm going to put someone on
the spot. DR, would you mind sharing what the wheel of jargon is while I put it up on
screen for our visual audience? Okay, sure. So we realized that our audience is made
up not only of seasoned podcasters, but also new podcasters just coming on board, basically.
And there are a lot of, just like any profession, they have their own jargon, their own words
that mean something just within that group of people. And podcasting is no different.
We have our own jargon. And it could be very intimidating for new people coming on board.
And they don't know what an RSS feed is. They don't know what a host is. They don't know
what any of these words mean. And sometimes it really is very deflating. So we have this
wheel of jargon to help you out a little bit. That was a perfect on the spot explanation.
Thank you, DR. I appreciate you filling that time for me and doing it with purpose. I love
it. All right. So I am going to spin the wheel. And if for some reason you don't hear it live,
don't worry. We're capturing the audio here on my roadcaster and on Riverside. So spinning
this wheel of jargon, we'll see who wants to answer the question that it lands on or the thing
that it lands on. Ooh, I might have to go to you. DR, I have it parentheses here. If you're
looking at us on screen, it says DR suggested this one. Oh boy. A.I.B. I hope it's one that I know.
A.I.B. Do you know what? A.I.B. Oh, A.I.B. It is, I'm not good at it, but I know that it's like
their number one, it costs an enormous amount of money for podcast hosts, hosting platforms,
distribution platforms to belong to the A.I.B. And it is a set of, no, you go ahead.
This is the wheel of jargon stumped the person who actually put the thing on it.
Maybe I put it on there, because I don't know what the hell it is. Mark, I think it's actually the
I.A.B. It's I.A.B. It's I.A.B. It's the I.A. Yeah. Okay. Well, there you go. Maybe there was a
typo on the wheel. I don't know. So here's what I, yeah, do you know what it is or would you like me
to share? I would love for you. So when people in podcasting talk about stats or downloads or
ad measurement, they almost always mean I.A.B. Short for interactive advertising bureau. I.A.B.
sets widely used podcast measurements standards, including how downloads are counted and filtered.
If you saw a I.A.B. Well, I.A.B. A.I.B. It's I.A.B. So the practical answer is in podcasting. Yeah,
I think I explained it. It's a measurement for, it's a standard for measurements, measuring different
analytics. Right. Now, I will tell you that there are some distribution platforms also known as
hosting platforms that will not join the I.A.B. Just because it is so cost prohibited. And where will
you find it on Lipson? Lipson has a little I.A.B. link. If you go up into, I think it's the top
right hand corner that you can click on it and find out about it. But there are some, like I said,
there are some distributing platforms that say we follow I.A.B. protocols, but we don't belong to
them. All right. Thank you. D.R. Ralph. Did you want to ask or add something? Yeah, I just
want to add one thing. And we have to understand what this is, what the real purpose of this is.
And the real purpose is as the money guy on the show, this is so advertisers have a benchmark to
know that the stats you're giving them about your content are certified. That's the whole point of
this I.A.B. So because there was a sort of a I got my cowboy hat on today. And there was kind of
a wild west mentality to the downloads thing before this I.A.B. came along. But it was really a way
to have a standard way to measure the downloads and all that sort of thing. And D.R. is absolutely
right. There are certain hosting providers that are agreeing or that I think the actual term is
certified. There's actually a certification process. But again, as the money guy on the show,
I want to go back to the, the why of this, the why of this is to have some non wild west standards
to measurement. That is a great point. Thank you. Who Ralph? Does anyone else want to comment or
add something? I appreciate Jenaid putting in the chat I.A.B.com. That's where you can learn more
about it. Okay. So it is, like I said, podcast on I don't need to go into a full explanation again.
And if you want more information, again, that URL is podcast thon.org with one T in podcast
thon. So here's how I want to do it. I'm going to go down the line. And again, I want to encourage
you in the live audience to please come up. There's Alex Baylish just in time. Please come up and be
prepared to talk about your charity. I'll ask you a bunch of questions. So don't feel like you
have to do a whole monologue here, right? But I'll ask you some questions about what the charity is
that you're highlighting today. I'll ask you to tell us a little bit about it and what made you
choose it. And we might have some follow ups along the way. We'll see how many of these we can get
through. And first, let's go to Ralph. Ralph, good morning again to you. What charity or non-profit
are you highlighting today? All right. So today, I want to talk about an anniversary. And today is
actually the three year anniversary of my mother passing away. And yeah, it's been a rough morning.
You don't realize until you're an adult, how much mom means to you. And the reason I picked,
the charity I picked is the Gleeoblastoma foundation. And I want to give you a little background. So
my mother was 76. And my sister and I just said two of us noticed that mom was slipping a little bit.
And like, I remember one morning, she was on her way to church and she forgot how to get there.
And it's about a mile from her house. And my sister and I sort of thought, well, you know, this is,
you know, this is getting older. She's starting to get forgetful. And I kind of, we kind of said,
okay, well, you know, we'll get her some testing. We'll see how things go. And it kind of got
put on the way side. Then for my mother's birthday, my sister took her on a cruise. And right before
she left for the cruise, she came to our house for Thanksgiving. And I could look at my mom's eyes
and see something wasn't right. You could just tell like she was looking off in a direction that
just didn't make any sense. But I, again, I chalked it up to maybe she's tired. Maybe something's
going on. And so she went on the cruise. When she got back, she was completely different. And
my sister said, you know, she wouldn't get up in the morning. My mom has always been an early
riser. She raised my sister and I as a single mom. My sister's name is Renee. I said, Renee,
we got to figure out what's going on here. So she took her to the ER right away. And the ER says,
well, I think she has COVID. This was all during the, you know, the, the back end of COVID things.
And I said, okay, I ended up spending a night with her in the ER. And, and it doctors made sense
what they were saying. You know, your mom's a little dehydrated. She's, you know, she's older.
She's getting forgetful. And I said, okay, that's fine. That sounds reasonable. So we took her home.
And again, like my mom wouldn't get out of bed. She wouldn't, she wouldn't do the normal things
that she did. And so I guess was what a week later from that mark, my sister said, again,
she took her to the ER. And I'm going to apologize ahead of time. I might get a little emotional,
but this is just, this is Ralph. I have a feeling this is going to be common for many of us.
And so I didn't go with her that night to the ER. And finally, an ER doctor said, you know,
I think we should run a CAT scan or some kind of scan here to really understand what's going on.
And I'll never forget the phone call. My sister called me and she said, Ralph, she says,
mom has a brain tumor. And it was like 11 o'clock at night. And I was not in the right frame of
mind. And I just said, well, how is that possible? And she says, well, I'm going to send you a picture
of what this looks like. And Mark and the rest of the crew, man, it looked like a golf ball.
In my mother, in the front of my mother's brain. And the only thing I could think of is,
okay, how do we fix this? Yeah. And my sister said, well, you know, she's going to have to meet
with a neurologist and all this kind of thing. And it's a blur mark. But I remember going
with my mom, they kept her in the hospital because they were like, this is a problem.
And it was a day or two. I think it was the next day. She had some more testing. And the neurologist
came in and I was sitting there with my mom. And neurologist says, I think what we're dealing with
here is called a glioblastoma. And I had heard the term before, but it didn't really, it didn't
really make a connection with me. And he kind of said, he said, listen, this is not good. And I
said, wait a second. I said, there's all kinds of technology. There's all kinds of great things.
I hear people, I have clients who have had brain surgery. And they're like, it's no big deal.
He goes, no, Ralph, you got to understand something. This is one of the most aggressive
tumors that you can get. And he said the really interesting thing. And I'm not going to take a
sidetrack is we don't usually see those and older people. We usually see those with people in
their 50s. Now I'm 50 at the time. And I'm thinking, oh, great. What do I got to deal with? And it's
still in the back of my mind today. You know, is this a genetic thing? So anyway. So my mother had
same mind. She goes, all right, well, what can we do? And the doctor says, well, we can go in
and operate and see what we can do to see what's going on. So they did the operation and eight hours
later bleeding. There was seven or eight surgeons calling in. And you know, they came to us in the
waiting room and said, listen, we did everything we can. But we got as much of as we can, but your mom
did not do well. And so we went, you know, they did the best they can. You know, they did the
surgery. They actually left the piece of her cranium off because of the swelling in the brain.
Yeah. Yeah. And I remember going back to the room, Mark, and to say that my mother never really
gained functionality again would be an understatement, it just totally ravaged her.
And the good news about all of this is that she had made a decision that she didn't want to have
a life sustained on tubes and all this kind of stuff. And which was a blessing because it was
easier for my sister and I to make the hard decision we had to make. And that hard decision was,
you know, we were going to see an doctor said, listen, there's really no help. There's no hope here.
And that's the reason I'm supporting this charity because they're really working to find hope.
But just to continue the end of this story here, we got to a point we were sitting there having
a conference with the surgeon trying to decide what was the next step. And he says, you know,
we can go in and try to do some more operation. He says, Ralph, but we're not going to be successful
with this. This is the type of tumor that it kind of spiders out. It goes out in all directions
within the brain. So there's really no way to get it. And he said, if it were my mother, I would let
her go. And just to attribute to how my mom is a fighter, we took her off all life support. She
lived for eight days with no life support. Wow. And it was Sunday, March 19, 2023. And they had
put her into hospice in the hospital. And I had to honor Mark of letting her go.
I held her hand. Listen, I'm a Christian guy. I'll see you again. But it changed me.
And if we can find a way for families that not have to endure this, that's why I'm supporting
this charity, Mark. Thank you, Ralph. I appreciate you sharing. I appreciate, I appreciate you being
comfortable enough to share your emotions around this. I can only imagine how it feels. I am
grateful that I have both my parents and I've had, I'm getting emotional. Just speak, I don't know
if it's because you're emotional or not. But I have parents that have both gone through cancer,
my mom breast cancer twice. My father actually had lymphoma on his brain, which is very rare
with lymphoma. And it's changed him. He's still with us. He's still a functioning human being.
And it's changed him. He's definitely got some brain damage from that. So I certainly can relate
in some ways. But in others, I haven't lost a parent. And I can only imagine what it's like
to say goodbye in that way. So thank you for sharing. And we want to talk for a little bit,
a moment about the actual charity. So if anybody wants to support them and what they do, I think this
is a good time to share about them. Yeah, thank you, Mark. And the whole point of the foundation is
to really understand a disease, which is just about, you know, they can go in and operate and they
go a lot of things. But the problem with this particular disease, it usually strikes people
in their late 40s and 50s. And it's honestly a death sentence. I've known several people since this
who have gotten this. And yeah, they can sustain your life. They go in and they go and take the tumor
out what they can. But it just doesn't resolve the issue. And I love what this organization is
doing because they're trying to find a way to give people hope. And you know, if we can find a way
to give people hope, I don't know that there's a solution. I don't know that there's a cure. But to
just give a family, because if you think about it, Mark, you and I are about that age, right? And we
have children, we have spouses, we have all those things. And you know, I guess my mom had lived
a full life. So I don't want to diminish that. You know, so there was part of it was like, you
know, okay, she got to see kids and grandkids and and all that sort of thing. But if we can give
somebody hope, that's why I really want to support this organization because I think they're at the
forefront of trying to find ways to to solve this problem. So I appreciate you giving me the time
today on the show. I apologize for getting a little emotional. It's just don't apologize.
Today being three years that her picture hangs in my office. And I know I've shared with the
group, I write songs and I wrote a song about that feeling of letting her go. And yeah, it's
interesting as an adult, like you just don't realize how much you miss your mom until you do
miss her. So here's my one takeaway for today. Call your mom today. Yeah. Speak to your mom today.
I would love to have that opportunity again. If so, if nothing else, if maybe you aren't
able to donate and you do have a mom or a mom figure in your life, that's a great way to honor
Ralph. The charity is mom as well. And just as what a surprising coincidence that this is the
three year anniversary today on a day that we are recognizing different charities and nonprofits
supporting causes that are very close to us, especially in this case, close to you, Ralph.
Thank you again for sharing that. I know Jonah is going to be joining us here shortly. And I
don't want to cut anyone else short. So I'm going to go to one of our guests on stage, guest,
meaning guest from the audience, not guests of the community by any stretch. Janaid, welcome.
Good morning. Do you have a charity, a nonprofit, an organization that you'd like to highlight
today? What charity were nonprofit? Would that be? Good morning, everyone. After that one, I think we
don't all have to get emotional. That's not the point of it. But it was reminding me of my grandmothers
who had to go through some of these similar situations, not as crazy. But one of my grandmothers,
she went and she was perfectly fine. She goes in for a routine checkup and they're like, oh,
we need to do a bypass surgery because you're some of the blockages. They do the surgery and then
accidentally they pin our lungs when they're closing their up. So she ends up being in a hospital
for 10 years. 10 years. Yes. Wow. Because because she was in her 70s when she went in seeing
my grandmothers in that situation, it's there's no there's no charity for such thing like that. I mean,
if they can just do a better job at treating patients, if there's a charity for that, I don't know.
But for many years since I've came out to the states, I worked and volunteered with Islamic
relief for many many years and they provide support all over the world. So that's the charity that
I'm going to be supporting some other charities and other organizations that I work with that are
local. One of them is care. They're the council on American Islamic relations, providing legal
support for Muslims who might have been, you know, wrongly accused or, you know, whatever,
whatever have you. And they're fighting on the behalf of the civil rights of people in the US.
So there's no organizations that I would highlight because they're doing the work that most people
they don't know where to go. Right. You have a lawyer issue who you're going to go to. So those
are some of the organizations that I support. Awesome. And if you want to put, if there's any link that
you can provide, put it in the chat, we will make sure it's in the show notes. We'll try to get it
on our podcastingmourningchat.com slash charity page. And it's janeid back to the first thing
that you were sharing. There are organizations that I they wouldn't put it as fighting mal practice.
That's just my terminology. But there are some out there. There's the patient advocate foundation
that helps patients navigate care insurance access issues. There's also the national patient
advocate foundation. There's the patient safety movement foundation as well. So there are several
that you could probably indirectly support that specific cause. But janeid, thank you for sharing
both of those this morning. I really appreciate it. Thank you. Yeah. And janeid, you want to share
anything about your website while we're chatting about your new product coming out? Sure. So the
new product coming out is called pod glue. It's the podcasters operating system to focus on building
relationships over episodes because as podcasters, we think that our episodes are the product.
But the episode are just a vehicle just like here on podcasting morning chat every episode.
We come closer. We become friends over life. It's an amazing way to start a relationship,
start a friendship, start a partnership, whatever have you. I mean just six months ago, we had our
good friend Ralph joined podcasting morning chat every single day. And now where are we at? He's
you know, he's executive producer. And as well as being the the title sponsor for in part podcasting
conference coming later years. So again, podcasting is not a product. We talk about it monetizing.
We talk about it, making money for us. But that's not the point. The point is to build relationships,
build communication and use it as a vehicle to connect deeper with other people. And I think that's
the thing that we all miss with podcasting. And a lot of people see that. And if anybody's on
the fence of starting a podcast, don't because you're going to build so many more connections,
so many more people over the world. It's going to be a game changer. So PRM is the book that's
coming out same day. I've got PR in book.com. So if you want to go on the list and then pod glue
is the implementation of that philosophy, thank you so much.
Trying to think of what should I do here while we wait? All right, I know what we're going to do here.
We're going to spin the wheel once more. Yes, I know it might feel a little jarring after we're
having some deeper conversation. Then all of a sudden I played the silly jingle and now I'm
spinning the silly wheel. But the silly wheel has good value to bring us. So let's see where this
lands while we're killing time for Jonah to join us. This is a good one. I have a feeling we
could hear from Janate on this one as well as one of our tech members of the community.
ID three tags. What are ID three tags? Now I have a very sloppy definition I could give,
but I'm curious if anybody would be willing to give a little more clear and concise one.
I'll take that. I've edited ID three tags for over 30 years. And that's specifically because
when Napster was coming on, you would get these music and all of the data would be all over the
place and you discover ID two tags. Essentially it's a meta data container embedded within audio files
mostly MP3s. So you can store content such as artist title album, genre track number and cover art.
So I would be sitting there on iTunes and different apps and editing ID three tags attaching
a cover art to it. So it brings a lot of joy. Thank you, Janate. I think you got a little cut off
there at the end. All right. So Jonah, there is some good echo going on. Well, welcome, Jonah burger.
Thank you. Okay. Well, let's get into it. So Jonah is here as I've shared multiple times this
week. And today Jonah is my closest dearest friend. We've been friends since I was about 14 years
old. Jonah about 15 or he was 15 years old at the time we met at summer camp camp ramblewood.
And that has been a big part of our lives for sure. And to this day, our some of our closest
friends are all from camp. My wife is from camp. And Jonah married someone not from our camp,
but somebody he met at camp. So it's very special to us. And I wanted to highlight CMT
because yes, Jonah was born with CMT. It is a hereditary disease in most cases. I know that there
can be spontaneous cases as well. But in the majority of the cases, it is passed down. So Jonah,
for anyone hearing about CMT for the first time today, can you tell us what it is and what daily
life with it can look like? Okay. CMT is a condition where in what's called the periphery of our
body. So from our elbows to our fingers and our knees to our toes, the nerves that are coated in a
myelin sheath. That's the coating on your nerves. Our myelin sheath in those parts of our bodies
are not functioning the way that they're supposed to. They're too thin, whatever. So the messages
from our brain to the muscles between our elbows and fingers and knees and toes don't get there
as clearly and as fast as they need to. And they're the messages slowing down cause the muscles
to be weak and mostly my wrists and hands and ankles and feet. And what that looks like day to day
is that when I get up in the morning, I have to have a instead of pop my shoes and socks on. I have
a five minute process to put on leg braces and shoes. And I need some help buttoning my shirts.
I need some help with fine motor, little things with my hands. And the other thing is tripping.
I fall a good bit. I trip a good bit. I'm clumsier than most just because of lack of balance and
that has proven over the years to be the biggest frustration I would say. Yeah, I hear you. And
the fine motor skills is something that I know I'm always very sensitive to. I know that and
about you. And I know how it always reminds me when I see you dealing with it just how challenging
CMT is because the way you operate people quickly forget that you have CMT, right? So when I see
you struggling putting, you know, buttoning a shirt, for example, it's like, oh, yeah, that's
right. Jonah has CMT. You can't do that. I'm a big personality. And I'm a very kind of dominant
personality. And I think that that echoes in strength. And so when you see a big personality,
deal with weakness. It's kind of a different. Yeah, it's a little shocking. Totally.
So Jonah, this was a question that I know DR who's with us here today. She had asked the other day
it was just about when did you first started started noticing CMT? When did you first realize
it was going to affect your life in a lasting way? And can you share how living with CMT has
shaped you over your lifetime? Good morning, DR. Good question. I remember the moment actually
because it's the first page in the book that I wrote about my life with CMT. I was in gym class
one day. I think it was the sixth grade. And I hit the ball over the second basement. And I ran
towards first. And I was like, I hit it over the second basement, man. I got plenty of time. And
I ran as fast as I could, as hard as I could. And I remember for the first time consciously
feeling like the way I phrased it in my book, my spirit was running faster than my legs were.
And that was such a real feeling. And I write in the book, I wish my 50-year-old self could be there
in that moment to be like, don't worry kid, you're going to be okay. It's all going to be fine
because now from 54 years old I can tell you not only has CMT turned out to be tolerable,
it has molded who I am completely. Yesterday I spoke at the middle school in our town in Michigan
to the sixth, seventh and eighth graders about appreciating each other's differences, not making
fun of them, but understanding them and learning to talk to each other. And I just,
there's something so profound about finding the positive in a negative. And my mom taught me to do
that. And I have very, very consciously followed that lead because it has led me to this understanding
that if your perspective is positive, your challenges can actually be positive. They can be
shaping to your life and to your choices and your perspective. If your perspective is negative,
the exact same thing is true. Everything can feel negative. So we don't have control over what we
are dealt often, but we have full control over what we do with them. Yeah, that's all about your
reticular activating system. That's the thing that when you have a certain perspective, you see more
of that perspective. That's right. Right. So it's like, yeah, if you're going to be really down
and negative about a situation like having CMT, that's right. That's what you're going to see
more of. You're going to see a lot of negativity, a lot of struggle. But then Jonah on the other
side of that coin being so positive, then you start to see all the positive stuff around CMT,
like the CMTA, which I know now you are also employed by. Yeah. And I don't know your exact
idea. I say you're the youth director, but I'm not sure if that's actually what you are.
I am the National Youth Programs Manager. Got it. Yes. Got it. And the big thing that Jonah does,
the super bowl of his job is Camp Footprint, which I have shared with you all before. I've been,
for the first time after 10 years of him doing it, I came and volunteered as a counselor there.
And I'm doing it twice this year. So really excited about that. We can talk a little bit more about
that. But first, DR, I think you had another question. I do. So Jonah, thank you so much for being
with us today. So I know that CMT has been around for many, many, many, many years. And a lot of
times when people give money to a charity, they think it's probably not doing any good because it's
been around for so long. So I would like for you to talk about the advances that CMT has made in
research, maybe in like simple hacks that we call hacks nowadays, from the time that you got it
to present. Yep. Great question. So up until the last 10 years or so, it's been all hacks.
How can we help you to figure out life and navigate life with CMT because there is no treatment?
There still officially is no treatment. But about 10 to 15 years ago, the first half in
curing a disease is to identify what's the problem. Then it becomes easier because you just have
to learn how to fix that problem. We learned what the problem is, the overproduction of PMP22,
truth be told. And since that day, now we are literally in the home stretch of starting to find
a cure. And the way I always phrase it to people who don't understand science like myself is that
I met with Dr. Shy, who's the world's leading researcher, third CMT. And I got up on his table.
This is like 15, 20 years ago now. I got up on his table and I was being a smart ass. And I
said, Doc, when are you going to cure this thing already? And he looked me square in the eye with
a straight face. And he said, in your lifetime, that's how close they are. And I'm 54 y'all. I'm
getting older. So, you know, it's, it's that fast. The other thing I would tell you to that
question, DR is that oftentimes in curing a disease, different researchers, different countries,
researchers are competing with each other. Cause whoever finds it first gets the money, gets the
fame blah, blah, blah, the world's researchers, when the CMTA researchers, Dr. Shy and his team
reached out to them, all came together for a meeting. And the long story short is they said,
we are so close with this thing that if we work together, we can cure this thing 10 times faster.
If we keep competing, it's going to be slower. And not only did everyone agree, but they agreed
and signed on to what's called the star alliance. And the star is kind of the CMTA symbol.
The star alliance means that all the world's leading researchers decided instead of the chance
that we could get the credit, let's work together. Because if we do, we can genuinely cure this
thing sooner than later. So, it's a very exciting time. And we got a five star rating from
National Nonprofit, which means that we do everything right, basically with the donations,
94% of donations go directly to research. Amazing. Great question, DR too. And I think that's
a really good question to ask on a day like today when we were talking about all these different
organizations and nonprofits that were interested in supporting. All right, Jonah, I know you have a
lot going on. I can take Ralph's question. Anyone on the 10 gallon hat gets to ask
this is Ralph's Thursday attire. He actually has a farm with cows. So that is a legitimate cowboy hat.
Go for it, Ralph. Yeah. And Jonah, I just want to congratulate you, man. You work for a great
organization. And as the money guy on the show, I always look at the backside of this. And Jonah
is telling the truth when he said they have an excellent rating. One of the sites that I use is
Charity Navigator. That's the one. Charity Navigator scores them a very high score for a great
organization to work with. So do your homework, but Jonah's organization is right on point. So Jonah,
thank you so much for what you're doing for the organization. And thank you for having an
organization that does it the right way. There's a lot of charities out there that don't. And Jonah,
so I just commend you and I wish you well. Thank you, cowboy. Look, the book that I wrote,
he walks like a cowboy. That's me right there in my. There it is. Very very appropriate.
We will have a link to that in the show notes as well. And I've shared it live here on clubhouse.
Jonah, I'm going to ask you one final question. This is a question that I don't think we talk a lot
about as best friends. You and I have been best friends. Like I said for a really long time,
how do you think CMT has played a role in our friendship, whether in ways people might notice
or ways they may not? Well, I would say that it played a role in our early days and our teenage
years because I was really starting to adjust to CMT. And it was really starting to kick in. And
man, those those early friendships, especially as guys go at that age to have people like you in my
life who actually had a true heart and an open heart to it. You always just came along for the ride.
You never once were phased. You just jumped right in. And I think that was without really knowing
it in the moment in retrospect, that was probably some of the biggest components of the foundation
of a friendship that was going to last a lifetime. There's just no two ways about it. And as we
grew older and we lived together for a chunk of years and our young adult days, that's when I got
my first pair of braces. That's when I was dealing with some of my biggest frustrations around
adjusting to it and being comfortable with it. And man, anytime you saw I was struggling, you were
there. Anytime you saw that I had accomplished something even emotionally, you were there to back
it up. And so like life, not just CMT, life, we have always done it side by side, man. And CMT
having a brother in arms to go through with, especially someone who didn't understand it
intrinsically, you didn't have it. And you were still there like you were in it with me, not just
observing it. And so yeah, there's not enough time in the world to talk about how much that means
to someone who's dealing with a challenge like this. Yeah, I can appreciate what you're saying. And
it's funny because I don't know that I ever made any conscious effort. No, like that. It wasn't a
plan that I had like, okay, I'm going to handle this this way. It was just something natural. And I
think it was really maybe more instinctively because I think I probably approached it how I'd
want to be approached. If I had CMT or had some kind of disease, this is how I'd want to be. That's
exactly right. Thank you, Jonah, for being here. CMT.org is the place to go to donate to CMT and
actually make a big difference toward this very close cure that we have here. So please go and
support. And also if you want to get Jonah's book, it's called He Walks Like a Cowboy. Thanks, Jonah.
You're so welcome. Pleasure to meet you guys. Having a quick chat during the craziness of my
morning, it was really nice connecting. So have a great day. Tell them about Candyman.
Oh, okay. They've heard it before. Candyman, what he's referring to, was from Campfoot
Print, the camp that is designed for children with CMT to help them just feel like kids and not
worry about what other people are thinking or doing. The Candyman reference, if you have been
following us since last August, I was designated the Candyman, which on the surface might sound a
little creepy, because here I am going around to camp with little kids handing out free candy.
But this was approved by the organization. And yeah, basically every day, just think like the
Candyman, I'm sorry, just think like the ice cream man or the ice cream person that comes down your
neighborhood street. It was the same idea I would drive around a golf cart going to different
activities stopping. And then the kids would line up and wait for their candy. And it was a great
way for me to get to know the kids in such a fun way. So the CMTA is doing lots of great things.
And I really encourage you if any of this touched you today to go to CMTAUSA.org. That is the
website. CMTAUSA.org and go donate today. Thanks again to Jonah for being here. I want to keep things
moving with anybody who would like to share about their organization that they'd like some support.
All right, DR are you pointing to you? You got to go for it, DR.
Okay, so last week I shared with you that my husband and I celebrated four years of cancer being
cancer-free. He had colon cancer. And you know, it's so funny when he was in the hospital during
the surgery and everything. He spent about three days in the hospital. And in between visiting him
and doing my regular job with podcasting, I was kind of shut out. He was like, I'm the man.
Don't worry about me. Everything's okay. I thought, oh, I'm, you know, this is this is our life.
So what I did was I dove in deep to all the Facebook pages that had anything to do with
ostomy and colon cancer and things like that. And I read up on it. I did like a crash course in
those three days. And it was just an amazing thing. I learned a lot. And stuff that he didn't
even know. He was coming to me for, you know, what should I do about this? And I had answers for him
because I had studied. And so my charity is stand up for cancer. And it's perfect because,
you know, Brian and I are, we kind of think of ourselves as so funny.
So especially on Friday, you know, Twister, Twisted Jeopardy. Anyway, I kind of, when I was living in
LA, I kind of dipped my toe into the cesspool of comedy writing and things like that jerked it
out real fast. But that's okay. But that's why this charity is so perfect for us because
it's all about comedy and making people laugh. And it's a feel good thing. And also bringing
awareness. So that's why I chose stand up for comedy. I love that. Yes. Stand up for cancer.
With comedy. Yeah. And they have a lot of big partners involved in this program as well.
You can go to standuptocancer.org to learn more about that. And DR, I think you had shared some
news with us that your, your husband got a good report recently, right? Yeah. Last, that was my
win last Friday. Oh God, now I'm going to have to come up with a win for this week. Anyway, okay.
It's not supposed to be something that you sigh about. Okay, go ahead. Okay. So yeah, um, four
years since the operation, since all the cancer was cut out of them. And so we are celebrating.
That's awesome. Congratulations to him. What a great cause. Stand up to cancer. So many of us have
been affected by cancer, different types in so many different ways. And this is a wonderful
way to support all the different causes as far as fighting cancer. Yes, Ralph, go ahead.
So I had a question for DR because DR, my wife went through a breast cancer. And my question
for you is on the sidelines, did you struggle the way I struggled? Oh, man, there were, you're
going to have to censor me so get ready. Stand by. There were so many times during what
that I wanted to say if you buddy, um, it's just a natural thing. He just got on my nerve so much.
But you were in it together, you know, that's what, that's what we go through. And a lot of that
stuff, he doesn't even remember. I mean, he was talking about stuff because of the medication that
he was giving. He was like, I said that I did really? Yeah, you did. Oh, man. So yeah.
Yeah, I know I just, I don't know about you. Um, and I don't want to take a big leap on this,
but I just felt so powerless DR because, you know, I'm a fix a guy. And I just wanted to fix this.
And I remember two weeks after my wife had a mastectomy, you know, I was like, I want you to start
getting back to normal. And there was no normal. And I don't know if you felt that same thing. I
felt so powerless. I felt sort of like a control. He shut me out. Probably, I don't know if he
realized he was doing that. But you know, he's like, I'm the man. I can do this and blah, blah, blah.
And so that's when I kind of went into overdrive and started thinking, you know what, I'm going to
make it so you can't shut me out. You're, I'm going to be your go-to person. You're going to be
asking me questions. And that's exactly what happened. Thank you for sharing DR. Great question.
Ralph, appreciate it. Okay. I want to keep things going here. So who else would like to share
about their organization? I'm going to go to Tim since Tim has joined us from the audience. Tim,
good morning. Welcome back to the stage. Is there a charity, a nonprofit that you would like
us to support? Oh, absolutely, Mark. Thank you so much for doing this. Well, back in 2021,
I was diagnosed with MS. And I've seen a number of organizations in my time with my diagnosis.
But the one organization that I really like is the Multiple Sclerosis Association of America,
MSAA, and they've provided a lot of great information, a lot of great support for me in my journey.
And with MS, I'm still, you know, doing podcasting for the federal government and for myself,
and kicking button, taking names. I won't let it keep me down. I love that. That's the Joan
of Burger attitude as well with what he has to deal with. And I think that is the best attitude.
And Tim, I don't know that I knew that. And if I did, please forgive me. I totally forgot. So
thank you for sharing a little bit about your journey. If I may, what's the, what would you say
right now is the biggest challenge for you dealing with MS? Fatigue is the biggest challenge right
now. I mean, yeah, I've got 21, 11 year olds. So that's even if I didn't have MS, I'd be tired.
Right. But yeah, fatigue, mental fog. It's me sometimes, you know, working on podcast episodes
for my clients. You know, sometimes I'll be like, you know what, we're going to give it an extra
day to work on this. You know, it's a thing. That's what I have. I have it. It doesn't have me.
Yep, exactly right. I've said that. I think that might even be a quote in one of Joan's books
that I've actually said that I CMT, yes, he has it, but he, it doesn't have him. I think that's
a wonderful attitude about it, Tim. And I'm so glad that you were able to share. And I appreciate
that you did share your journey with us. And yeah, again, what's the organization that we should
support? Sure, it's the multiple sclerosis association of America. It's MSAA.org.
Awesome. We will absolutely support that because we love supporting you, Tim. You've been such a
support to this community and to me personally. So we will do whatever we can. Thank you so much,
Tim, for sharing. Well, first, let me say again, podcast thon.org, what an amazing
organization that they have put together here. The fact that we literally have thousands of
podcasters talking this week about charitable causes, nonprofits that we all want to support.
It's just mind blowing. And what a powerful thing that they've put together. And yeah, it was
only I think last year that it became a worldwide initiative. I think prior to that, it was mainly
being held in Europe. And they had just recently extended that to a worldwide initiative. And I
couldn't be more more proud to be a part of it. So kudos to them at podcast thon with one t.org.
Tomorrow we're back celebrating our wins as dr said how so excited she is for that. So what
we do is we share our wins from this past week and celebrate them together. And nothing is too
big. Nothing is too small. It's your win. And it deserves to be celebrated. So bring that tomorrow.
Of course, we'll be talking some podcasting as well. We'll probably dig into the mailbag a little
bit. And then we'll get into our win. So thank you all for being a part of this. Go to podcasting
morning chat.com slash charity to learn about the charities you've heard today. And some others
that you didn't get to hear today. Part of the team has shared some different organizations
that they like to support. And you can learn about that over there. So until tomorrow,
make it a great day, everybody. Take care.



