September 3, 2025 • 30 mins
Community DC Host Dennis Glasgow visits with the Arthrtis Foundation National Capital Region's long-time volunteer Steve Smith and Executive Director Rebecca Caldwell about a myriad of topics including upcoming events and how you can be a part of the AFNCR!
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Episode Transcript
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Speaker 1 (00:01):
Good morning, and welcome to another edition of Community d C.
I'm your host Tennis Glasgow. This morning, we welcome back
the Arthritis Foundation for the Greater Capital Region. We'll be
speaking with Steve Smith, who is a longtime volunteer and
has a personal connection to his relationship and commitment with
the foundation. We'll also be speaking with the executive director,
Rebecca Caldwell about outcoming events including runs, walks, and a
(00:23):
huge gala that's coming up in October. Here's my conversation
with Steve and Rebecca. I hope you enjoyed as much
as I did. Good morning, Steve, Good morning, Well listen,
it's great to have you board. This is the first
time that you've been on Community to DC and of
course in just a bit we're going to talk to
you Rebecca Caldwell about all the events. Rebecca has been
on the show before, and for full disclosure, most of
my listening and audience over the four years that I've
done this program knows that I've been living with rumatoid
(00:45):
arthritis since i was twenty one years old and it's
been a part of just about three quarters of my
life now, and I've seen ebbs and flows and peaks
and valleys like a lot of people that have the disease.
So when I hear about somebody like you and Rebecca
and people that give their hard earned time to go
to such a great cause and where arthritis was and
where it is today, we're very appreciative of people like you, Steve,
so welcome aboard. I'd like to do this though, because
(01:07):
there are so many listeners that didn't get a chance
to hear other conversations about the Arthritis Foundation with Rebecca
and some of the other guests we've had over the years.
With that said, I'd love for you to talk just
a little bit about the National DC chapter, how long
it's been around, and what it exactly does. Because when
people hear about the Arthritis Foundational they say, well, that's interesting,
but what do you guys do? So if you could
(01:28):
just give us a brief history, that'd be great.
Speaker 2 (01:29):
Well, the Arthritis Foundation itself has been around for seventy
five years. I was form back in the late forties
by a bunch of people. Originally I think it was
called the Rheumatoid Rheumatoid Association.
Speaker 3 (01:40):
Or something like that, right right.
Speaker 2 (01:42):
The primary purpose of it is to be champions for
the people who have arthritis.
Speaker 4 (01:47):
It's kind of simple.
Speaker 2 (01:49):
As an organization, we try to open doors to influential individuals.
Organizations develop community partners and partnership so that we can
raise money.
Speaker 4 (01:58):
It's a philanthropic organization. We have two goals.
Speaker 2 (02:00):
One is awareness and two is fundraised, and if we're
successful at both of those, will cure the disease. It's
really quite simple, and I firmly believe it's curable. I
am not a scientist. I did not stay at the
Holiday and Express last night. But the improvements I've seen
in the last twenty five thirty years and knowing what
causes it versus what they can do to fix it,
I'm convinced that a cure maybe not in you or
(02:22):
my lifetime, but I.
Speaker 4 (02:23):
Think it will happen.
Speaker 1 (02:24):
Yeah, I agree with you, Stevie. You know, one of
the things I'd like you if you're comfortable sharing with
the audience, and we'll always talk about, you know, acknowledgment
and relating as human beings. I run into so many
people now that either have ra like I do, or
under the umbrella. There's so many different things psoriasis and lupus,
and I could go on and on about the umbrella
(02:45):
of the arthritis family. But it effectively directed you and
your wife and your family when when it came to arthritis.
Can you talk a little bit about that?
Speaker 2 (02:53):
Oh sure, Oh sure, And just a footnote on what
you just said, there's a roughly one hundred and fourteen
different types of rhematic and incredible.
Speaker 3 (02:59):
Yeah.
Speaker 4 (03:00):
Like like you said, it can go on for a while.
Speaker 2 (03:02):
But our journey started back in roughly nineteen ninety four,
ninety five when our two year old daughter was diagnosed
with juvenile rheumatory arthritis.
Speaker 4 (03:10):
And it's a slogan, a motto, if you will, but
kids do get arthritis too.
Speaker 2 (03:15):
Then they don't seem to understand that roughly three hundred
thousand kids in this country diagnosed with juvenile arthritis. And
you always were always asked how did you get involved
with the Arthritis Foundation? And we say, well, it kind
of picked us, It was there for us. We really,
I'm gonna say I was there for my wife because
she was the one who's taken to my child. The
doctor I was still in active duty and immediately upon diagnosis,
(03:36):
some of the the information it was given to my
wife had our thrist Foundation stamp on the back of it.
You could contact people, and the office at the time
was up on Wisconsin Avenue, I think or something like that.
Speaker 4 (03:48):
My wife immediately got in touch with them and what
they did for us it's pretty nice.
Speaker 3 (03:52):
Yeah, yeah, And I understand that it's saving Yeah.
Speaker 1 (03:56):
I mean, it's emotional stuff, you know, because of the
one thing that I can relate to having the disease
is that when I talked to my wife about having children,
knowing that what I had, I said, you know, the
one thing that scares the crap out of me is
that I don't want to pass this down to my
daughter because I know what I've been through and it
was brutal, and everybody's got their own journey. And i'd
love to hear about your daughters and where she is today.
(04:17):
And you and I offline, we're talking about the incredible
changes in medication and therapies, and we'll talk about those
few things to educate our listeners about it. But to
where I was, and also your daughter was, science has
come so far, it's absolutely incredible, Steve. So I was
hoping you could share a little bit about that and
how she's doing right now.
Speaker 4 (04:38):
She's doing amazing.
Speaker 2 (04:39):
I mean, she still has a disease, but like I said,
she's had it for almost thirty years. She is a
registered nurse out of Fairfax and nov Hospital.
Speaker 3 (04:48):
That's wonderful.
Speaker 4 (04:49):
I jokingly tell people she stayed in a business.
Speaker 3 (04:52):
She sure did, didn't she.
Speaker 2 (04:53):
And she's got a great career and she's doing very well.
The thing that helped us a lot and how we
learned about the medications and obviously was Hererita Foundation, but
it was also the juvenile arthritis family that comes in there.
It's a small group of people, obviously over three hundred
thousand people. They have a national conference every year and
that's where we got our education. That's where we found
out that there's a world around us that we can
(05:16):
be a part of. And it became kind of that
old joke about you know your friends of your family choose.
This was the family we chose. And the first couple
of conferences we went to and there were like six seven,
eight hundred people these conferences with their families and the children.
You can see different levels of impact, crutches, braces on
(05:41):
fingers and knees, wheelchairs, actual what i'll call deformations. You know,
the kids with juveni arthritis. It affected their body so
hard and so impacted that you could tell by looking
at them they had arthritis.
Speaker 4 (05:56):
Yeah, and that was it's called two thousand. Okay.
Speaker 2 (06:00):
Now, if you go to a juvenile arthritis conference, you
can't tell who has arthritis and who doesn't have arthritis.
Speaker 3 (06:05):
That's right.
Speaker 2 (06:05):
You might see a wheelchair, and the wheelchair might be
there if at the end of the day it's just
getting to be too much and the kid hops in
the wheelchair just to get pushed back to the room.
But the difference is astounding, and that difference is based
on the scientific advances that have occurred on medications that
everybody sees advertised every day on TV rints. You remickaid,
(06:30):
all these things.
Speaker 3 (06:30):
Revoke is out there, Yeah.
Speaker 2 (06:32):
Renvoke, hume era, and a lot of them have other uses,
so you'll hear them recognize too about other things. But
these biologics, they call them, where they're actually biologically creating
these medicines that are a lifesaver and a life changer
for a lot of these kids. And it's organizations, particularly
like the Arthritis Foundation, that donates millions of dollars every
(06:55):
year for research and development that's come up with these
medicines and that, I mean, that's a nutshell version of
the whole history of this. But you can tell by
looking at that, and I'm sure it's something back that
you through your life, the changes that occurred and allowed
these kids to grow up to be a use I
lets say, useful but productive adults. Yeah, and happy to
be going and everything. And it's exciting to see what's
(07:18):
happening there.
Speaker 3 (07:19):
Yeah, it really is.
Speaker 1 (07:20):
And you know, I always share my story not for
have people to feel sorry for me, Steve, but it
was rough. You know, we're talking about nineteen eighty seven
and there's no Internet, there's no social media, and there
wasn't any education. And as I got it, you know,
I felt like I was on an island by myself,
having in this mystery disease where I lost all this weight.
(07:41):
I was in terrible pain in the bed a lot
and not being able to move around or work for
a couple of years. And doing that and going through
watching the internet takeover education, the drugs as you mentioned,
and the amazing scientific things that have happened over the
last couple of decades. This is the biggest thing beside
(08:02):
the medication. That I love about the foundation and talking
to people like Rebecca and other people that work at
the local chapter in the national one two is that
families and people with the disease can now talk about
it with other families and people that have it and
be able to relate. You and I, I'm sure would
agree that the human condition, we need simple acknowledgment, and
(08:24):
we also need to be able to relate to each other.
And if I know that you have something or family
has something that I'm experiencing, I'm not by myself. And
I love that families can get together, whether it's at
a conference or on a helpline or just talking in
a group with other people. That's absolutely extraordinary and I
can't begin to tell you how healing it is just
(08:45):
to say, oh my gosh, you have it too, what's
your story? And that's where the journey begins for a
lot of people. And that's a big part of what
we do with volunteers, and the volunteers.
Speaker 4 (08:56):
Can be anybody.
Speaker 2 (08:57):
There's no qualification to have arthritis to be a Derek
Thrada's Foundation, but we always tell them one of our
slogos is tell your story. Let people know what's going on.
And it was funny you talk about before the internet.
When my daughter was six, she went to her first
national conference and I was deployed. That's that's my story
for a lot of my early life. My wife went
(09:18):
to pick her up because they divide them up by
by age, not by disease, so the siblings and the
non siblings are all together everything. And she walked out
of the room the first day and looked at her
mom and said, Mommy, mommy, there's other kids in America
like me.
Speaker 3 (09:30):
Yeah. Yeah, amazing.
Speaker 2 (09:33):
And you know, brought my wife to tears because she'd
always worked real hard to tell her what was going
on and share.
Speaker 4 (09:38):
I mean knew it was a big secret.
Speaker 2 (09:40):
And you see that every year at the conferences, where
these families will come in with these big doe eyes
like they've just been you know, obviously diagnosed recently, with
no idea what they're getting into. And then two and
a half days later they're crying and hugging their new friends.
Speaker 3 (09:54):
Yeah the family, Yeah.
Speaker 4 (09:56):
And exactly.
Speaker 2 (09:57):
And then that quick they realized that there's a world
there to support them, to be with them to that
understands it, gets it. My daughter went off to arthritis
camp as a child for years and years and years
until she couldn't go anymore. She graduated, she finished, got
her nursing degree, went back to that same camp it's
up in Vermont as a member of the medical staff,
(10:19):
and after a couple of years she's and since then
she has been the camp director.
Speaker 4 (10:23):
She volunteers, she saves her to PTO in her leave
to go up in August.
Speaker 2 (10:27):
She just got home this past weekend as the camp
director for this camp with kids with arthritis.
Speaker 3 (10:31):
Wow so and a.
Speaker 2 (10:33):
Bunch of large portion of her staff were campers with
her back in the early two thousands.
Speaker 1 (10:39):
That give back, that's amazing. So everybody who's paying it forward,
which is cool. I mean, she's in an industry where
she's always giving herself, but she's doing that personally.
Speaker 2 (10:47):
Yes, And my wife and I you know, been going
to conferences for twenty some years now almost you know
a long time, and we.
Speaker 4 (10:56):
Haven't had a child with us at the conference in
probably ten years.
Speaker 2 (10:59):
Because we're doing the same thing. We're giving back and
the opportunity to volunteer at national level is the privilege
that the Arthurized Foundation has given us to where we
help plan these conferences and run the conferences. So it's
obviously I could talk your ear off, and I know
as a radio guy, that's what you want to hear.
But there's nothing but good things I can say about
(11:20):
the Foundation, what it can do for people, how it
can help them, and how it empowers them and enables,
especially as children, to advocate for themselves, to take care
of their themselves, and to immediately turn around and share
that with other children. You see seven eight year olds
come up to a kid first time at a conference and
put arm around them and they go off in their
immediate buddies and they talking. So it's an amazing thing.
Speaker 1 (11:42):
Well, and my takeaway from your stories to you is
it's all about fellowship and that relating again with families
that you're not alone out there and we're all going
to get through this, even though everybody has their own
specific journey. I did want to talk about some of
the things that the Foundation is doing and that you've
been part of and that you've been witnessing and also
been a part of yourself.
Speaker 3 (12:03):
Can you just maybe share a.
Speaker 1 (12:04):
Few stories about you know, whether you know you get
to take a look at you know, research and you
get to work with doctors or other families or what's
happening out there. Because I know that there's so many
different kind of buckets that the foundation does, But can
you share some of the things behind the scenes about
what you're seeing, what you're witnessing, and what we can
get excited about.
Speaker 4 (12:22):
Oh? Sure. The Arthrise Foundation runs on volunteers.
Speaker 2 (12:26):
So our local organization, I mean you mentioned Rebecca, she's
our local director and she has one other staff person
who works with her, Maddie Martin, and that's it. That's
our local staff. Everything else is run by volunteers. So
I'm fortunate enough right now to be the local Leadership
board chair and we have a committee of people that
(12:47):
run the organization here in the area and as far
as putting together these events, and it's not all about fundraising,
that's a big part of it.
Speaker 4 (12:56):
That's what we do, all of us.
Speaker 2 (12:57):
That's the constant throughout that we have people who work
advocacy that will organize and become part of the group
that goes once a year up on the Capitol Hill
and will advocate four different laws, different rules.
Speaker 4 (13:09):
They also have advocacy at local levels, so they can go.
Speaker 2 (13:13):
To the state capitals and one of the biggest victories
are pulling off recently, and I know our advocacy department
will laugh they hear me talk about it, because that's
not one thing I'm involved in. That's my wife's involved in.
That is a thing called step therapy where originally insurance
companies said you had to complete level one, level two,
and level three or you can get to the level
three medicine even if the doctors trying to diagnose the
(13:34):
level three medicine. And they've been working for years and
years to change that to where you don't have to
go through two years of discomfort which you might completely
understand before you can get to the medicine that you need,
especially if you have to change insurance companies or something
like that would make you start over again. So that's
something you have to write. As foundations heavily involved with.
There'll be people over one hundred people coming in from
(13:56):
around the country in September.
Speaker 4 (13:58):
To do just that, to go up and advocate on
the hill.
Speaker 2 (14:01):
We have our events that we do fundraising events where
you can be on a committee, maybe doing logistics, not
the fundraising aspect of it. You can be involved from
that perspective. So we have the Jingle Bowl Run, we
have the Arthritis Walk in the spring, we have galas.
A lot of the chapters will have different events that
aren't necessarily what you call standard events, but there's people
(14:23):
who's interested in having those events. And one of them
that's blown up is out on the West Coast is
called a California Coast Classic and our national Leadership volunteer
guy named Dennis Healing out of San Diego would love
me hear me he's talking about this. They ride from Monterey, California,
down to San Francisco.
Speaker 3 (14:39):
It's pretty cool.
Speaker 4 (14:40):
It's a five hundred mile run or something like.
Speaker 2 (14:42):
Maybe it's sound in LA I don't know, however, five
hundred miles is out there. They're raising over a million
and a half dollars every year just doing this bike ride.
So there's all kinds of events that you can get
involved with. If you want something, you want to start something,
we can do that. I've been fortunate to visit some
of the research labs down a Duke University and see
the work they're doing with some of the research money
that's going on down there. And you and I can
(15:03):
laugh about this because we're about to say the same age,
but you see his kids in doctors coats. Yeah, running
around they're all doctors and the researchers.
Speaker 4 (15:10):
It's amazing.
Speaker 3 (15:11):
Well do we'll do.
Speaker 1 (15:12):
I used to live in Raleigh for years and I've
actually been to that facility before and it's abolutely amazing.
Speaker 3 (15:16):
I think this is a great segue.
Speaker 1 (15:18):
Also, Steve, I want to put a pin in our
conversation because I do want to talk about events with
Rebecca Callwell for just a few moments, and including the
gala that's coming up and some walks to run. So
let's talk with Rebecca right now. Well, Rebecca, it's great
to have you back on Community DC and we're here
to talk about events with you as I had chatted about,
and we're going to get back to Stephen just a moment.
But there are so many cool things year round that
(15:40):
you guys do, and I know it's busy for you.
It's just so exciting the different events, Gollie you've got
coming up. Tell all listeners about all the things that
are coming up that they can get excited about.
Speaker 5 (15:50):
Thanks, Dennis, and it's great to be on your show again.
We appreciate the time and we're excited October ninth, which
is not long from today, we have our annual Commitment
to a Cure galap This year will be on Thursday
evening October ninth at the Marriotte Metro.
Speaker 6 (16:07):
Center and so we are excited about that.
Speaker 5 (16:10):
We've got some very accomplished but passionate honorees this year.
We also have our speaker this year will be a
four year old girl who was born with rheumatoid arthritis
are Juvenile Arthritis, representing our juvenile arthritis community, and I
think it's going to be something.
Speaker 6 (16:30):
That we wish everyone could hear.
Speaker 5 (16:32):
So if you're interested in that, please go to our
website and there you will find more information about those
who will be in attendance and all of that, ways
to attend and ways to sponsor.
Speaker 6 (16:43):
So there's still a little time for that.
Speaker 5 (16:45):
Also coming up our annual Jingle Bell Run, which is
a lot of fun. This year, it's going to be
back again in Arlington at West Post at the National
Landing in Arlington. It'll be held on Saturday morning, December sixth,
and we'll start early and last year, I believe even
with the rain, we probably had over three hundred runners.
(17:05):
But we hope to double that this year, so it's
a five k run children. We even have a specific
run right before we kick off four children under twelve, so.
Speaker 6 (17:13):
It's great day.
Speaker 5 (17:14):
Lots of things to do and then afterwards certainly there
are lots of places to shop and things like that.
So we forward to that and the last thing in
it's funny to talk about the Spring of twenty twenty six,
but we will be doing our walk again this year
and it'll be our second time down at the Wharf
in DC. So there's a lot to get involved in
(17:35):
a lot of events coming up.
Speaker 6 (17:36):
Just please call me or email me. I'm happy to
provide information.
Speaker 1 (17:40):
Well good and before we let you go, Rebecca, because
I know we get a lot of people that are
in the arthritis family like myself who want to maybe
give back, and we're going to talk to Steve about
donations and how you can give money and be a
part of a year round or one time donations and
all the different ways you can donate money. But with
that said, about volunteering time when you do the walks
or any of the other events, do you need volunteers
(18:01):
and if so, how would you be able to get
a hold.
Speaker 5 (18:02):
Of you Absolutely that's one of our biggest things is
that we need volunteers. We cannot do these events alone,
but we also we enjoy having volunteers and getting to
know people and families, so we encourage you to.
Speaker 6 (18:17):
You can contact me.
Speaker 5 (18:19):
I'm at our Caldwell C A L D W E
L L at arthritis dot org.
Speaker 6 (18:26):
It's really simple, so I'm happy to help. Give me
a call anytime. You can go to our website.
Speaker 5 (18:33):
It's at arthritis dot org our website and then you can.
Speaker 6 (18:38):
Find Metro DC. From there, you.
Speaker 5 (18:40):
Can also on the same websites that you sign up
to attend or be involved with the activities, you can
also sign up to be a volunteer. So we look
forward to everyone coming out and participating in these events.
Speaker 6 (18:54):
We'd love to have you.
Speaker 3 (18:56):
Very good, Rebecca.
Speaker 1 (18:56):
Thank you so much for your valuable time, and we'll
stay in touch with really appreciate it.
Speaker 6 (19:00):
Thank you so much, Dennis, have a great day.
Speaker 1 (19:02):
Okay, Steve, we're back and that was a great chat
with Rebecca. You know the Gael it's coming up. Sounds
like a really remarkable evening. I imagine you've been to several.
Could you just give a flavor just for our listeners
about you know, expectations about that night because it's not
just you know, having a little bit of food, but
I mean, the fellowship is there. There's a lot of
things going on. But as you've been to several of
(19:23):
them over the years, can you kind of give a
scope of what people can expect.
Speaker 3 (19:26):
When they attend one.
Speaker 2 (19:27):
Oh sure, sure, Like you said, there is dinner and
you mentioned fellowship numerous times, which is obvious. But to
be blunt, it's a fundraising event. If anybody ever invites
you to go to a gala and you don't take
a check book with you, you don't.
Speaker 4 (19:40):
Understand why you're going to a gala, that's right.
Speaker 2 (19:43):
So there will be a silent auction with a lot
of different things from the local area and the local
region that'll be available to purchase, several different events that
are kind of fun where you know you can make
your donations. We've got some great honorees that will be
honooring a rheumatologist. We've got a child on a red
(20:04):
juvenile arthritis. She's four years old and an amazing little character.
I got to see her at our last national conference
here in July in Salt Lake City, cute as a button,
But it kind of hits home when you realize, you know,
to so many people, arthritis is an old people disease. Yeah,
it's not for those for those of us who've seen
a lot of TV commercials. And he use a great
(20:26):
picture and I love him to death, But Nolan Ryan
going out and throwing a couple of Indians getting sore,
taking a couple of bills and going out and throwing
nine more innings, that's not quite yet. So it's an
incurable disease. There is a slight chance that children can
grow out of the version of juvenile arthritis. It's not
the same as an adult arthritis. But to see that
and understand that it goes across all ages. You know,
(20:48):
you're talking sixty million people in this country that have
diagnosed with some form of arthritis that it causes like
one hundred and thirty one hundred and forty billion dollars
in lost revenue every year because people can't work. There's
an impact there. And by raising the money that we're
going to do it to galen and have fun doing
it and enjoyable and then again, like you said, partnership
and fellowship, it's a great opportunity to make a difference,
(21:10):
and that difference can be made in a fun event.
It's not a black tie affair we do like you know,
if you want to wear a tux, you can wear
a tux. It's a chance to dress up, come and
socialize with people and for a very very good costs.
Speaker 1 (21:23):
And if you can indulge me just a little bit
more when it comes to donations to you because people
can get on the website, which we'll give a few
more times before we conclude our conversation. But there's a
big giant, fat red donate button on the top right
hand corner of the website, and there are one time
givings but also monthly too, so there's many ways people
can give.
Speaker 2 (21:42):
Correct and I'll put at a plug. Yes, all the
money goes to the same place, but I'll get very
cororochial here for a minute. You know, Rebecca is our
page staff. I'm the volunteer. Part of her grades, if
you will, part of her evaluations is their fundraising goals.
So if you can sneak down into it to the
Metro DC area and donate there, we'd really appreciate. Yes,
But every event we have there's going to be a
(22:04):
fundraising page. I know that Rebecca mentioned just a few
months ago the jingle Bill run in the walk. There
are web pages where you can on that arthreatus dot org.
Speaker 4 (22:14):
You go to get.
Speaker 2 (22:15):
Involved and you can see jingle Bill Run or Arthritis
Walk and you drill down a little further and I'll
take your right to the local area, pick your walk.
You can sign up and if you want to volunteer
and come out, you can sign up as a volunteer.
Speaker 4 (22:25):
If you want to come out.
Speaker 2 (22:25):
And participate, you can do that. It'll help you build
your own fundraising page right online. Because a lot of
people are very uncomfortable walking up to somebody and say, hey, Dennis,
can you give me twenty bucks for the arthritis Foundation.
You can send them an email, you don't have to
touch them, you don't have to touch the money, and
they can donate or not and that it kind of
breaks down that embarrassing a little interview you have to
(22:47):
might have to do, and you can do it right online.
So that part's great as well. So there's a million
ways to do it. If you've got any questions, I know,
like Rebecca said, you can contact her if you want
to get in touch with me. She can provide my
contact information. And we love volunteers to get involved. And
I never try to lead with the fundraising part. When
I want volunteers to come out, I want to come
out and build it, and they will come type perspective
(23:09):
and see the event, see how much fun they are,
see how it impacts people both young, and that'll make
them want to get involved, whether it's for their grandmother,
for themselves, their spouse or a child, or just a
guy who lives next door the man of arthraatis.
Speaker 4 (23:21):
It's all a good cause. It all makes a big difference.
Speaker 1 (23:24):
Right, And I think that over the years being through
this with many decades now with your daughter and also
hearing my journey too, we're running into some people that
have some form of arthritis, and I'm curious it's somebody
where it's been in your family now for a very
long time. You're giving all your time to the foundation too,
as a volunteer in educating yourself. I'm curious about the
(23:46):
future and what you see happening. I'm sure you're excited
about some things, but sometimes you probably get a little
bit more behind the scenes than I would or somebody
else would. What excites you about as you move forward
with a foundation and how arthritis is being treated by research,
doctors and people that have it.
Speaker 2 (24:01):
The biggest thing excites me, Like I mentioned, I think
they can I think they can cure this. It's the
changes we've seen and you've seen where this stuff is
treating it.
Speaker 4 (24:11):
It's stopping it.
Speaker 2 (24:13):
Right now, it's keeping it from getting worse. And that's
that's an exciting thing. These medications, granted they're not curing it,
but they're stopping it or treating it. They're not just
treating the pain. They're actually treating the arthritis and that's important.
And you know, it's funny you say you keep growing
with it. We make reference to our daughter who was
diagnosed it too. We have two more kids that have
(24:34):
different versions of arthritis that were diagnosed in your adulthood
as well. So people say, well, how long going to
volunteer and I said, until we cure athritis.
Speaker 3 (24:41):
Yeah, it's a simple as that.
Speaker 2 (24:42):
So there's a lot going on. You can see it
on TV, you can you can hear what's going on.
And one of the voluntar opportunities my wife had is
she's been a patient advocate over at NIH where she
was actually as a patient advocate.
Speaker 4 (24:53):
She was on a committee that was helping to vote
whether to use some of these medications.
Speaker 3 (24:57):
Is that right?
Speaker 4 (24:58):
Yes? And it's kind of a.
Speaker 2 (25:00):
The stories she told at times where you know that
the doctors are kind of arguing over who's gonna get
credit for it, and somebody asked her what she thought,
and she goes, I don't care who gets credit for
as long as you put the thing out there, right, yeah,
And that kind of changed tone a little bit, I think,
But it's there.
Speaker 4 (25:14):
It's happening.
Speaker 2 (25:15):
The research is happening, and you see these things happening,
and some of the studies that are being done about
how certain other medications are finding out have an impact
on it too on the side that when't designed to
do and vice versas some of these arthritis druggs that
are helping. So again, I'm kind of rambling a little bit,
but there's plenty happening. And the more we can donate
(25:38):
to our groups like the Arthritis Foundation, who can turn
around and donate to these research organizations, the better chance
we have to solvedent sooner better than later.
Speaker 1 (25:45):
That that's well said, and I know you've seen this
with your family. A whole part of the advocation, and
I know what is is to get those drug prices down,
because some of them are extremely expensive and if you
don't have full insurance of covers it. There's a lot
of Americans that don't get the kind of cover that
maybe your daughter does or I do out there. And
I like to see everybody be able to get all
the best medications at a low price.
Speaker 3 (26:06):
And that's not happening right now today.
Speaker 4 (26:07):
And that's very true.
Speaker 2 (26:09):
But at the risk of getting my tire slice later,
I will put in a plug to say the amount
of money that's spent on research versus how much how
many drugs come out the other end. To a certain level,
you kind of understand it. You know, for every eight
or ten that they're developing, maybe one gets on the market.
So you know, there is a cost of doing business
type thing here. Yes, I agree and bring our costs down,
but I agree. I always try to tell people that,
(26:30):
because you know, they just don't sit down and say, okay,
we're going to doing arthritis drug and have this ready
to go. It takes years of testing, years of development
to make these happen. These biologics, they're not going out
in the field and waiting for it to grow and
then harvest them. They're actually chemically reproducing these things. So, yeah,
prices are high, and we understand that, but there is
a cost of doing business. Also suggest not saying that
(26:52):
it legitimizes the cost, but just no, I agree, I.
Speaker 4 (26:55):
Agree for us.
Speaker 1 (26:55):
I agree with you completely. Well, Steve loves do this.
I've enjoyed the conversation. I'd like to give the website
one more time and also remind people about the gala
that is coming up. There's also a Jingle Bold Walk,
and there are runs and all sorts of different things
coming up there Rebecca talked about. But let's give that
website so everybody can check all the great information. It's
easy to navigate, folks. There's a lot of information on there, researching, donation, advocating.
(27:20):
It goes on in the history of arthritis and how
you can get help out there and also talk to
other families.
Speaker 3 (27:25):
Let's give that website, Steve.
Speaker 2 (27:26):
Yeah, it's arthritis dot org and that is pre eminent
site of expertise about all aspects of arthritis. If you're
curious what's going on here in the DC area, just
go to the upper right side of the upper right
hand corner and you'll see your area. You click on that,
it'll bring up a pic to the state in the city,
and they'll give you the local events that they're going
on there you can find out and it'll give you
(27:46):
contact information for Rebecca or for Maddie as I mentioned
them earlier. Everything's there, And I know you know, when
you talk to people in medical experts, they say there's
a few places you can go that aren't doctor Google,
But the Arthritis Foundation is tops for arthritis information and
arthritis dot org, not arthurritis dot com.
Speaker 1 (28:03):
All right, outstanding at Steve. Thank you so much for
your time, thank you for sharing your personal journey, and
thank you for all you're doing, you and your wife
and your kids for the foundation. It's truly incredible. I
know it's affected you personally and specifically, but it's great
you're giving back, and from someone like me who's had
it for a very long time, I'm always in awe
of other families giving their valuable time towards the foundation.
(28:24):
So thank you so much for joining us on community
c and I hope to see you down the road.
Speaker 4 (28:28):
My pleasure, sir.
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Good morning, and welcome to another edition of Community d C.
I'm your host Tennis Glasgow. This morning, we welcome back
the Arthritis Foundation for the Greater Capital Region. We'll be
speaking with Steve Smith, who is a longtime volunteer and
has a personal connection to his relationship and commitment with
the foundation. We'll also be speaking with the executive director,
Rebecca Caldwell about outcoming events including runs, walks, and a
(00:23):
huge gala that's coming up in October. Here's my conversation
with Steve and Rebecca. I hope you enjoyed as much
as I did. Good morning, Steve, Good morning, Well listen,
it's great to have you board. This is the first
time that you've been on Community to DC and of
course in just a bit we're going to talk to
you Rebecca Caldwell about all the events. Rebecca has been
on the show before, and for full disclosure, most of
my listening and audience over the four years that I've
done this program knows that I've been living with rumatoid
(00:45):
arthritis since i was twenty one years old and it's
been a part of just about three quarters of my
life now, and I've seen ebbs and flows and peaks
and valleys like a lot of people that have the disease.
So when I hear about somebody like you and Rebecca
and people that give their hard earned time to go
to such a great cause and where arthritis was and
where it is today, we're very appreciative of people like you, Steve,
so welcome aboard. I'd like to do this though, because
(01:07):
there are so many listeners that didn't get a chance
to hear other conversations about the Arthritis Foundation with Rebecca
and some of the other guests we've had over the years.
With that said, I'd love for you to talk just
a little bit about the National DC chapter, how long
it's been around, and what it exactly does. Because when
people hear about the Arthritis Foundational they say, well, that's interesting,
but what do you guys do? So if you could
(01:28):
just give us a brief history, that'd be great.
Speaker 2 (01:29):
Well, the Arthritis Foundation itself has been around for seventy
five years. I was form back in the late forties
by a bunch of people. Originally I think it was
called the Rheumatoid Rheumatoid Association.
Speaker 3 (01:40):
Or something like that, right right.
Speaker 2 (01:42):
The primary purpose of it is to be champions for
the people who have arthritis.
Speaker 4 (01:47):
It's kind of simple.
Speaker 2 (01:49):
As an organization, we try to open doors to influential individuals.
Organizations develop community partners and partnership so that we can
raise money.
Speaker 4 (01:58):
It's a philanthropic organization. We have two goals.
Speaker 2 (02:00):
One is awareness and two is fundraised, and if we're
successful at both of those, will cure the disease. It's
really quite simple, and I firmly believe it's curable. I
am not a scientist. I did not stay at the
Holiday and Express last night. But the improvements I've seen
in the last twenty five thirty years and knowing what
causes it versus what they can do to fix it,
I'm convinced that a cure maybe not in you or
(02:22):
my lifetime, but I.
Speaker 4 (02:23):
Think it will happen.
Speaker 1 (02:24):
Yeah, I agree with you, Stevie. You know, one of
the things I'd like you if you're comfortable sharing with
the audience, and we'll always talk about, you know, acknowledgment
and relating as human beings. I run into so many
people now that either have ra like I do, or
under the umbrella. There's so many different things psoriasis and lupus,
and I could go on and on about the umbrella
(02:45):
of the arthritis family. But it effectively directed you and
your wife and your family when when it came to arthritis.
Can you talk a little bit about that?
Speaker 2 (02:53):
Oh sure, Oh sure, And just a footnote on what
you just said, there's a roughly one hundred and fourteen
different types of rhematic and incredible.
Speaker 3 (02:59):
Yeah.
Speaker 4 (03:00):
Like like you said, it can go on for a while.
Speaker 2 (03:02):
But our journey started back in roughly nineteen ninety four,
ninety five when our two year old daughter was diagnosed
with juvenile rheumatory arthritis.
Speaker 4 (03:10):
And it's a slogan, a motto, if you will, but
kids do get arthritis too.
Speaker 2 (03:15):
Then they don't seem to understand that roughly three hundred
thousand kids in this country diagnosed with juvenile arthritis. And
you always were always asked how did you get involved
with the Arthritis Foundation? And we say, well, it kind
of picked us, It was there for us. We really,
I'm gonna say I was there for my wife because
she was the one who's taken to my child. The
doctor I was still in active duty and immediately upon diagnosis,
(03:36):
some of the the information it was given to my
wife had our thrist Foundation stamp on the back of it.
You could contact people, and the office at the time
was up on Wisconsin Avenue, I think or something like that.
Speaker 4 (03:48):
My wife immediately got in touch with them and what
they did for us it's pretty nice.
Speaker 3 (03:52):
Yeah, yeah, And I understand that it's saving Yeah.
Speaker 1 (03:56):
I mean, it's emotional stuff, you know, because of the
one thing that I can relate to having the disease
is that when I talked to my wife about having children,
knowing that what I had, I said, you know, the
one thing that scares the crap out of me is
that I don't want to pass this down to my
daughter because I know what I've been through and it
was brutal, and everybody's got their own journey. And i'd
love to hear about your daughters and where she is today.
(04:17):
And you and I offline, we're talking about the incredible
changes in medication and therapies, and we'll talk about those
few things to educate our listeners about it. But to
where I was, and also your daughter was, science has
come so far, it's absolutely incredible, Steve. So I was
hoping you could share a little bit about that and
how she's doing right now.
Speaker 4 (04:38):
She's doing amazing.
Speaker 2 (04:39):
I mean, she still has a disease, but like I said,
she's had it for almost thirty years. She is a
registered nurse out of Fairfax and nov Hospital.
Speaker 3 (04:48):
That's wonderful.
Speaker 4 (04:49):
I jokingly tell people she stayed in a business.
Speaker 3 (04:52):
She sure did, didn't she.
Speaker 2 (04:53):
And she's got a great career and she's doing very well.
The thing that helped us a lot and how we
learned about the medications and obviously was Hererita Foundation, but
it was also the juvenile arthritis family that comes in there.
It's a small group of people, obviously over three hundred
thousand people. They have a national conference every year and
that's where we got our education. That's where we found
out that there's a world around us that we can
(05:16):
be a part of. And it became kind of that
old joke about you know your friends of your family choose.
This was the family we chose. And the first couple
of conferences we went to and there were like six seven,
eight hundred people these conferences with their families and the children.
You can see different levels of impact, crutches, braces on
(05:41):
fingers and knees, wheelchairs, actual what i'll call deformations. You know,
the kids with juveni arthritis. It affected their body so
hard and so impacted that you could tell by looking
at them they had arthritis.
Speaker 4 (05:56):
Yeah, and that was it's called two thousand. Okay.
Speaker 2 (06:00):
Now, if you go to a juvenile arthritis conference, you
can't tell who has arthritis and who doesn't have arthritis.
Speaker 3 (06:05):
That's right.
Speaker 2 (06:05):
You might see a wheelchair, and the wheelchair might be
there if at the end of the day it's just
getting to be too much and the kid hops in
the wheelchair just to get pushed back to the room.
But the difference is astounding, and that difference is based
on the scientific advances that have occurred on medications that
everybody sees advertised every day on TV rints. You remickaid,
(06:30):
all these things.
Speaker 3 (06:30):
Revoke is out there, Yeah.
Speaker 2 (06:32):
Renvoke, hume era, and a lot of them have other uses,
so you'll hear them recognize too about other things. But
these biologics, they call them, where they're actually biologically creating
these medicines that are a lifesaver and a life changer
for a lot of these kids. And it's organizations, particularly
like the Arthritis Foundation, that donates millions of dollars every
(06:55):
year for research and development that's come up with these
medicines and that, I mean, that's a nutshell version of
the whole history of this. But you can tell by
looking at that, and I'm sure it's something back that
you through your life, the changes that occurred and allowed
these kids to grow up to be a use I
lets say, useful but productive adults. Yeah, and happy to
be going and everything. And it's exciting to see what's
(07:18):
happening there.
Speaker 3 (07:19):
Yeah, it really is.
Speaker 1 (07:20):
And you know, I always share my story not for
have people to feel sorry for me, Steve, but it
was rough. You know, we're talking about nineteen eighty seven
and there's no Internet, there's no social media, and there
wasn't any education. And as I got it, you know,
I felt like I was on an island by myself,
having in this mystery disease where I lost all this weight.
(07:41):
I was in terrible pain in the bed a lot
and not being able to move around or work for
a couple of years. And doing that and going through
watching the internet takeover education, the drugs as you mentioned,
and the amazing scientific things that have happened over the
last couple of decades. This is the biggest thing beside
(08:02):
the medication. That I love about the foundation and talking
to people like Rebecca and other people that work at
the local chapter in the national one two is that
families and people with the disease can now talk about
it with other families and people that have it and
be able to relate. You and I, I'm sure would
agree that the human condition, we need simple acknowledgment, and
(08:24):
we also need to be able to relate to each other.
And if I know that you have something or family
has something that I'm experiencing, I'm not by myself. And
I love that families can get together, whether it's at
a conference or on a helpline or just talking in
a group with other people. That's absolutely extraordinary and I
can't begin to tell you how healing it is just
(08:45):
to say, oh my gosh, you have it too, what's
your story? And that's where the journey begins for a
lot of people. And that's a big part of what
we do with volunteers, and the volunteers.
Speaker 4 (08:56):
Can be anybody.
Speaker 2 (08:57):
There's no qualification to have arthritis to be a Derek
Thrada's Foundation, but we always tell them one of our
slogos is tell your story. Let people know what's going on.
And it was funny you talk about before the internet.
When my daughter was six, she went to her first
national conference and I was deployed. That's that's my story
for a lot of my early life. My wife went
(09:18):
to pick her up because they divide them up by
by age, not by disease, so the siblings and the
non siblings are all together everything. And she walked out
of the room the first day and looked at her
mom and said, Mommy, mommy, there's other kids in America
like me.
Speaker 3 (09:30):
Yeah. Yeah, amazing.
Speaker 2 (09:33):
And you know, brought my wife to tears because she'd
always worked real hard to tell her what was going
on and share.
Speaker 4 (09:38):
I mean knew it was a big secret.
Speaker 2 (09:40):
And you see that every year at the conferences, where
these families will come in with these big doe eyes
like they've just been you know, obviously diagnosed recently, with
no idea what they're getting into. And then two and
a half days later they're crying and hugging their new friends.
Speaker 3 (09:54):
Yeah the family, Yeah.
Speaker 4 (09:56):
And exactly.
Speaker 2 (09:57):
And then that quick they realized that there's a world
there to support them, to be with them to that
understands it, gets it. My daughter went off to arthritis
camp as a child for years and years and years
until she couldn't go anymore. She graduated, she finished, got
her nursing degree, went back to that same camp it's
up in Vermont as a member of the medical staff,
(10:19):
and after a couple of years she's and since then
she has been the camp director.
Speaker 4 (10:23):
She volunteers, she saves her to PTO in her leave
to go up in August.
Speaker 2 (10:27):
She just got home this past weekend as the camp
director for this camp with kids with arthritis.
Speaker 3 (10:31):
Wow so and a.
Speaker 2 (10:33):
Bunch of large portion of her staff were campers with
her back in the early two thousands.
Speaker 1 (10:39):
That give back, that's amazing. So everybody who's paying it forward,
which is cool. I mean, she's in an industry where
she's always giving herself, but she's doing that personally.
Speaker 2 (10:47):
Yes, And my wife and I you know, been going
to conferences for twenty some years now almost you know
a long time, and we.
Speaker 4 (10:56):
Haven't had a child with us at the conference in
probably ten years.
Speaker 2 (10:59):
Because we're doing the same thing. We're giving back and
the opportunity to volunteer at national level is the privilege
that the Arthurized Foundation has given us to where we
help plan these conferences and run the conferences. So it's
obviously I could talk your ear off, and I know
as a radio guy, that's what you want to hear.
But there's nothing but good things I can say about
(11:20):
the Foundation, what it can do for people, how it
can help them, and how it empowers them and enables,
especially as children, to advocate for themselves, to take care
of their themselves, and to immediately turn around and share
that with other children. You see seven eight year olds
come up to a kid first time at a conference and
put arm around them and they go off in their
immediate buddies and they talking. So it's an amazing thing.
Speaker 1 (11:42):
Well, and my takeaway from your stories to you is
it's all about fellowship and that relating again with families
that you're not alone out there and we're all going
to get through this, even though everybody has their own
specific journey. I did want to talk about some of
the things that the Foundation is doing and that you've
been part of and that you've been witnessing and also
been a part of yourself.
Speaker 3 (12:03):
Can you just maybe share a.
Speaker 1 (12:04):
Few stories about you know, whether you know you get
to take a look at you know, research and you
get to work with doctors or other families or what's
happening out there. Because I know that there's so many
different kind of buckets that the foundation does, But can
you share some of the things behind the scenes about
what you're seeing, what you're witnessing, and what we can
get excited about.
Speaker 4 (12:22):
Oh? Sure. The Arthrise Foundation runs on volunteers.
Speaker 2 (12:26):
So our local organization, I mean you mentioned Rebecca, she's
our local director and she has one other staff person
who works with her, Maddie Martin, and that's it. That's
our local staff. Everything else is run by volunteers. So
I'm fortunate enough right now to be the local Leadership
board chair and we have a committee of people that
(12:47):
run the organization here in the area and as far
as putting together these events, and it's not all about fundraising,
that's a big part of it.
Speaker 4 (12:56):
That's what we do, all of us.
Speaker 2 (12:57):
That's the constant throughout that we have people who work
advocacy that will organize and become part of the group
that goes once a year up on the Capitol Hill
and will advocate four different laws, different rules.
Speaker 4 (13:09):
They also have advocacy at local levels, so they can go.
Speaker 2 (13:13):
To the state capitals and one of the biggest victories
are pulling off recently, and I know our advocacy department
will laugh they hear me talk about it, because that's
not one thing I'm involved in. That's my wife's involved in.
That is a thing called step therapy where originally insurance
companies said you had to complete level one, level two,
and level three or you can get to the level
three medicine even if the doctors trying to diagnose the
(13:34):
level three medicine. And they've been working for years and
years to change that to where you don't have to
go through two years of discomfort which you might completely
understand before you can get to the medicine that you need,
especially if you have to change insurance companies or something
like that would make you start over again. So that's
something you have to write. As foundations heavily involved with.
There'll be people over one hundred people coming in from
(13:56):
around the country in September.
Speaker 4 (13:58):
To do just that, to go up and advocate on
the hill.
Speaker 2 (14:01):
We have our events that we do fundraising events where
you can be on a committee, maybe doing logistics, not
the fundraising aspect of it. You can be involved from
that perspective. So we have the Jingle Bowl Run, we
have the Arthritis Walk in the spring, we have galas.
A lot of the chapters will have different events that
aren't necessarily what you call standard events, but there's people
(14:23):
who's interested in having those events. And one of them
that's blown up is out on the West Coast is
called a California Coast Classic and our national Leadership volunteer
guy named Dennis Healing out of San Diego would love
me hear me he's talking about this. They ride from Monterey, California,
down to San Francisco.
Speaker 3 (14:39):
It's pretty cool.
Speaker 4 (14:40):
It's a five hundred mile run or something like.
Speaker 2 (14:42):
Maybe it's sound in LA I don't know, however, five
hundred miles is out there. They're raising over a million
and a half dollars every year just doing this bike ride.
So there's all kinds of events that you can get
involved with. If you want something, you want to start something,
we can do that. I've been fortunate to visit some
of the research labs down a Duke University and see
the work they're doing with some of the research money
that's going on down there. And you and I can
(15:03):
laugh about this because we're about to say the same age,
but you see his kids in doctors coats. Yeah, running
around they're all doctors and the researchers.
Speaker 4 (15:10):
It's amazing.
Speaker 3 (15:11):
Well do we'll do.
Speaker 1 (15:12):
I used to live in Raleigh for years and I've
actually been to that facility before and it's abolutely amazing.
Speaker 3 (15:16):
I think this is a great segue.
Speaker 1 (15:18):
Also, Steve, I want to put a pin in our
conversation because I do want to talk about events with
Rebecca Callwell for just a few moments, and including the
gala that's coming up and some walks to run. So
let's talk with Rebecca right now. Well, Rebecca, it's great
to have you back on Community DC and we're here
to talk about events with you as I had chatted about,
and we're going to get back to Stephen just a moment.
But there are so many cool things year round that
(15:40):
you guys do, and I know it's busy for you.
It's just so exciting the different events, Gollie you've got
coming up. Tell all listeners about all the things that
are coming up that they can get excited about.
Speaker 5 (15:50):
Thanks, Dennis, and it's great to be on your show again.
We appreciate the time and we're excited October ninth, which
is not long from today, we have our annual Commitment
to a Cure galap This year will be on Thursday
evening October ninth at the Marriotte Metro.
Speaker 6 (16:07):
Center and so we are excited about that.
Speaker 5 (16:10):
We've got some very accomplished but passionate honorees this year.
We also have our speaker this year will be a
four year old girl who was born with rheumatoid arthritis
are Juvenile Arthritis, representing our juvenile arthritis community, and I
think it's going to be something.
Speaker 6 (16:30):
That we wish everyone could hear.
Speaker 5 (16:32):
So if you're interested in that, please go to our
website and there you will find more information about those
who will be in attendance and all of that, ways
to attend and ways to sponsor.
Speaker 6 (16:43):
So there's still a little time for that.
Speaker 5 (16:45):
Also coming up our annual Jingle Bell Run, which is
a lot of fun. This year, it's going to be
back again in Arlington at West Post at the National
Landing in Arlington. It'll be held on Saturday morning, December sixth,
and we'll start early and last year, I believe even
with the rain, we probably had over three hundred runners.
(17:05):
But we hope to double that this year, so it's
a five k run children. We even have a specific
run right before we kick off four children under twelve, so.
Speaker 6 (17:13):
It's great day.
Speaker 5 (17:14):
Lots of things to do and then afterwards certainly there
are lots of places to shop and things like that.
So we forward to that and the last thing in
it's funny to talk about the Spring of twenty twenty six,
but we will be doing our walk again this year
and it'll be our second time down at the Wharf
in DC. So there's a lot to get involved in
(17:35):
a lot of events coming up.
Speaker 6 (17:36):
Just please call me or email me. I'm happy to
provide information.
Speaker 1 (17:40):
Well good and before we let you go, Rebecca, because
I know we get a lot of people that are
in the arthritis family like myself who want to maybe
give back, and we're going to talk to Steve about
donations and how you can give money and be a
part of a year round or one time donations and
all the different ways you can donate money. But with
that said, about volunteering time when you do the walks
or any of the other events, do you need volunteers
(18:01):
and if so, how would you be able to get
a hold.
Speaker 5 (18:02):
Of you Absolutely that's one of our biggest things is
that we need volunteers. We cannot do these events alone,
but we also we enjoy having volunteers and getting to
know people and families, so we encourage you to.
Speaker 6 (18:17):
You can contact me.
Speaker 5 (18:19):
I'm at our Caldwell C A L D W E
L L at arthritis dot org.
Speaker 6 (18:26):
It's really simple, so I'm happy to help. Give me
a call anytime. You can go to our website.
Speaker 5 (18:33):
It's at arthritis dot org our website and then you can.
Speaker 6 (18:38):
Find Metro DC. From there, you.
Speaker 5 (18:40):
Can also on the same websites that you sign up
to attend or be involved with the activities, you can
also sign up to be a volunteer. So we look
forward to everyone coming out and participating in these events.
Speaker 6 (18:54):
We'd love to have you.
Speaker 3 (18:56):
Very good, Rebecca.
Speaker 1 (18:56):
Thank you so much for your valuable time, and we'll
stay in touch with really appreciate it.
Speaker 6 (19:00):
Thank you so much, Dennis, have a great day.
Speaker 1 (19:02):
Okay, Steve, we're back and that was a great chat
with Rebecca. You know the Gael it's coming up. Sounds
like a really remarkable evening. I imagine you've been to several.
Could you just give a flavor just for our listeners
about you know, expectations about that night because it's not
just you know, having a little bit of food, but
I mean, the fellowship is there. There's a lot of
things going on. But as you've been to several of
(19:23):
them over the years, can you kind of give a
scope of what people can expect.
Speaker 3 (19:26):
When they attend one.
Speaker 2 (19:27):
Oh sure, sure, Like you said, there is dinner and
you mentioned fellowship numerous times, which is obvious. But to
be blunt, it's a fundraising event. If anybody ever invites
you to go to a gala and you don't take
a check book with you, you don't.
Speaker 4 (19:40):
Understand why you're going to a gala, that's right.
Speaker 2 (19:43):
So there will be a silent auction with a lot
of different things from the local area and the local
region that'll be available to purchase, several different events that
are kind of fun where you know you can make
your donations. We've got some great honorees that will be
honooring a rheumatologist. We've got a child on a red
(20:04):
juvenile arthritis. She's four years old and an amazing little character.
I got to see her at our last national conference
here in July in Salt Lake City, cute as a button,
But it kind of hits home when you realize, you know,
to so many people, arthritis is an old people disease. Yeah,
it's not for those for those of us who've seen
a lot of TV commercials. And he use a great
(20:26):
picture and I love him to death, But Nolan Ryan
going out and throwing a couple of Indians getting sore,
taking a couple of bills and going out and throwing
nine more innings, that's not quite yet. So it's an
incurable disease. There is a slight chance that children can
grow out of the version of juvenile arthritis. It's not
the same as an adult arthritis. But to see that
and understand that it goes across all ages. You know,
(20:48):
you're talking sixty million people in this country that have
diagnosed with some form of arthritis that it causes like
one hundred and thirty one hundred and forty billion dollars
in lost revenue every year because people can't work. There's
an impact there. And by raising the money that we're
going to do it to galen and have fun doing
it and enjoyable and then again, like you said, partnership
and fellowship, it's a great opportunity to make a difference,
(21:10):
and that difference can be made in a fun event.
It's not a black tie affair we do like you know,
if you want to wear a tux, you can wear
a tux. It's a chance to dress up, come and
socialize with people and for a very very good costs.
Speaker 1 (21:23):
And if you can indulge me just a little bit
more when it comes to donations to you because people
can get on the website, which we'll give a few
more times before we conclude our conversation. But there's a
big giant, fat red donate button on the top right
hand corner of the website, and there are one time
givings but also monthly too, so there's many ways people
can give.
Speaker 2 (21:42):
Correct and I'll put at a plug. Yes, all the
money goes to the same place, but I'll get very
cororochial here for a minute. You know, Rebecca is our
page staff. I'm the volunteer. Part of her grades, if
you will, part of her evaluations is their fundraising goals.
So if you can sneak down into it to the
Metro DC area and donate there, we'd really appreciate. Yes,
But every event we have there's going to be a
(22:04):
fundraising page. I know that Rebecca mentioned just a few
months ago the jingle Bill run in the walk. There
are web pages where you can on that arthreatus dot org.
Speaker 4 (22:14):
You go to get.
Speaker 2 (22:15):
Involved and you can see jingle Bill Run or Arthritis
Walk and you drill down a little further and I'll
take your right to the local area, pick your walk.
You can sign up and if you want to volunteer
and come out, you can sign up as a volunteer.
Speaker 4 (22:25):
If you want to come out.
Speaker 2 (22:25):
And participate, you can do that. It'll help you build
your own fundraising page right online. Because a lot of
people are very uncomfortable walking up to somebody and say, hey, Dennis,
can you give me twenty bucks for the arthritis Foundation.
You can send them an email, you don't have to
touch them, you don't have to touch the money, and
they can donate or not and that it kind of
breaks down that embarrassing a little interview you have to
(22:47):
might have to do, and you can do it right online.
So that part's great as well. So there's a million
ways to do it. If you've got any questions, I know,
like Rebecca said, you can contact her if you want
to get in touch with me. She can provide my
contact information. And we love volunteers to get involved. And
I never try to lead with the fundraising part. When
I want volunteers to come out, I want to come
out and build it, and they will come type perspective
(23:09):
and see the event, see how much fun they are,
see how it impacts people both young, and that'll make
them want to get involved, whether it's for their grandmother,
for themselves, their spouse or a child, or just a
guy who lives next door the man of arthraatis.
Speaker 4 (23:21):
It's all a good cause. It all makes a big difference.
Speaker 1 (23:24):
Right, And I think that over the years being through
this with many decades now with your daughter and also
hearing my journey too, we're running into some people that
have some form of arthritis, and I'm curious it's somebody
where it's been in your family now for a very
long time. You're giving all your time to the foundation too,
as a volunteer in educating yourself. I'm curious about the
(23:46):
future and what you see happening. I'm sure you're excited
about some things, but sometimes you probably get a little
bit more behind the scenes than I would or somebody
else would. What excites you about as you move forward
with a foundation and how arthritis is being treated by research,
doctors and people that have it.
Speaker 2 (24:01):
The biggest thing excites me, Like I mentioned, I think
they can I think they can cure this. It's the
changes we've seen and you've seen where this stuff is
treating it.
Speaker 4 (24:11):
It's stopping it.
Speaker 2 (24:13):
Right now, it's keeping it from getting worse. And that's
that's an exciting thing. These medications, granted they're not curing it,
but they're stopping it or treating it. They're not just
treating the pain. They're actually treating the arthritis and that's important.
And you know, it's funny you say you keep growing
with it. We make reference to our daughter who was
diagnosed it too. We have two more kids that have
(24:34):
different versions of arthritis that were diagnosed in your adulthood
as well. So people say, well, how long going to
volunteer and I said, until we cure athritis.
Speaker 3 (24:41):
Yeah, it's a simple as that.
Speaker 2 (24:42):
So there's a lot going on. You can see it
on TV, you can you can hear what's going on.
And one of the voluntar opportunities my wife had is
she's been a patient advocate over at NIH where she
was actually as a patient advocate.
Speaker 4 (24:53):
She was on a committee that was helping to vote
whether to use some of these medications.
Speaker 3 (24:57):
Is that right?
Speaker 4 (24:58):
Yes? And it's kind of a.
Speaker 2 (25:00):
The stories she told at times where you know that
the doctors are kind of arguing over who's gonna get
credit for it, and somebody asked her what she thought,
and she goes, I don't care who gets credit for
as long as you put the thing out there, right, yeah,
And that kind of changed tone a little bit, I think,
But it's there.
Speaker 4 (25:14):
It's happening.
Speaker 2 (25:15):
The research is happening, and you see these things happening,
and some of the studies that are being done about
how certain other medications are finding out have an impact
on it too on the side that when't designed to
do and vice versas some of these arthritis druggs that
are helping. So again, I'm kind of rambling a little bit,
but there's plenty happening. And the more we can donate
(25:38):
to our groups like the Arthritis Foundation, who can turn
around and donate to these research organizations, the better chance
we have to solvedent sooner better than later.
Speaker 1 (25:45):
That that's well said, and I know you've seen this
with your family. A whole part of the advocation, and
I know what is is to get those drug prices down,
because some of them are extremely expensive and if you
don't have full insurance of covers it. There's a lot
of Americans that don't get the kind of cover that
maybe your daughter does or I do out there. And
I like to see everybody be able to get all
the best medications at a low price.
Speaker 3 (26:06):
And that's not happening right now today.
Speaker 4 (26:07):
And that's very true.
Speaker 2 (26:09):
But at the risk of getting my tire slice later,
I will put in a plug to say the amount
of money that's spent on research versus how much how
many drugs come out the other end. To a certain level,
you kind of understand it. You know, for every eight
or ten that they're developing, maybe one gets on the market.
So you know, there is a cost of doing business
type thing here. Yes, I agree and bring our costs down,
but I agree. I always try to tell people that,
(26:30):
because you know, they just don't sit down and say, okay,
we're going to doing arthritis drug and have this ready
to go. It takes years of testing, years of development
to make these happen. These biologics, they're not going out
in the field and waiting for it to grow and
then harvest them. They're actually chemically reproducing these things. So, yeah,
prices are high, and we understand that, but there is
a cost of doing business. Also suggest not saying that
(26:52):
it legitimizes the cost, but just no, I agree, I.
Speaker 4 (26:55):
Agree for us.
Speaker 1 (26:55):
I agree with you completely. Well, Steve loves do this.
I've enjoyed the conversation. I'd like to give the website
one more time and also remind people about the gala
that is coming up. There's also a Jingle Bold Walk,
and there are runs and all sorts of different things
coming up there Rebecca talked about. But let's give that
website so everybody can check all the great information. It's
easy to navigate, folks. There's a lot of information on there, researching, donation, advocating.
(27:20):
It goes on in the history of arthritis and how
you can get help out there and also talk to
other families.
Speaker 3 (27:25):
Let's give that website, Steve.
Speaker 2 (27:26):
Yeah, it's arthritis dot org and that is pre eminent
site of expertise about all aspects of arthritis. If you're
curious what's going on here in the DC area, just
go to the upper right side of the upper right
hand corner and you'll see your area. You click on that,
it'll bring up a pic to the state in the city,
and they'll give you the local events that they're going
on there you can find out and it'll give you
(27:46):
contact information for Rebecca or for Maddie as I mentioned
them earlier. Everything's there, And I know you know, when
you talk to people in medical experts, they say there's
a few places you can go that aren't doctor Google,
But the Arthritis Foundation is tops for arthritis information and
arthritis dot org, not arthurritis dot com.
Speaker 1 (28:03):
All right, outstanding at Steve. Thank you so much for
your time, thank you for sharing your personal journey, and
thank you for all you're doing, you and your wife
and your kids for the foundation. It's truly incredible. I
know it's affected you personally and specifically, but it's great
you're giving back, and from someone like me who's had
it for a very long time, I'm always in awe
of other families giving their valuable time towards the foundation.
(28:24):
So thank you so much for joining us on community
c and I hope to see you down the road.
Speaker 4 (28:28):
My pleasure, sir.
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