August 8, 2024 • 30 mins
Community DC Host Dennis Glasgow visits with President & CEO for the National Psoriasis Foundation to talk about education, diagnosing, treatment, research, donations and much more.
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Episode Transcript
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Speaker 1 (00:01):
Good morning, and welcome to another edition of Community DC.
I'm your host Dennis Glascow. This morning we get a
chance to bring back one of our friends, Leah Howard,
who is the president and CEO for the National Soriasis Foundation.
August is National Ciriasis Month, so what better time to
catch up and revisit with exactly what soriasis is, diagnosis,
how it's treated, research and education, and how to donate
(00:24):
them much more. For more information, head over to their
website soriasis dot org and they have a helpline at
eight hundred seven two three nine to one sixty six.
Here's my conversation with Leah. I hope you enjoy it
as much as I did. Good morning, Leah, Good morning Dunnis.
It's been a while, it has It's great to be back. Well,
it's great to have you back because Sorius's Action Month
(00:44):
is right now in August that we're going to talk about.
And while you are pretty much a regular for us
and we always appreciate your valuable time, there's always something
new when it's coming to the Crisis Foundation. So with
all that said, I'd like to do this first because
we always have a lot of new lists said, tune
into this program. Maybe haven't met you and what you
do when it comes to all the things that are
(01:06):
at the National Ciasis Foundation, Can you tell me what
exactly first the foundation does and then we'll get into
the nitty gritty and the weeds and everything.
Speaker 2 (01:13):
Yeah, absolutely, thank you. I love to introduce the Foundation
to people that haven't had a chance to meet us before.
I like to say, I think you know we're a strong,
but mighty organization that's kind of been quietly working behind
the scenes for individuals living with psoriasis and story at
a charthritis since actually the late nineteen sixties. So my
(01:34):
favorite story, our quick story about our founding is we
were actually founded by a woman in Portland, Oregon who
lived with severe psoriasis, and for her thirtieth birthday, her
husband put a little ad in the newspaper, The ore
Going In just inviting people to call this number to
share information and get resources. And in that first week
she got one hundred phone calls. And what that showed
(01:57):
her was that there were all these people in right
there in her own community who were silently, quietly struggling
with their sooriatic disease just like she was. And so
she really set out to try to change their lives
in her own life, and over the next few years
they met in libraries and at kitchen tables, formed the
(02:19):
Pariasis Society of Oregon and then became the National Psoriasis Foundation.
And so since Beverly founding of the organization, since the
late nineteen sixties, we have been serving individuals across the
United States living with ciasis and soriatic arthritis. And there's
actually just over eight million of us. I myself have
(02:40):
psoriasis and one of the people in this community. But
for those that might not be familiar, soriasis is a chronic, systemic,
immune mediated disease. So what does that mean? If you
have been diagnosed with psoriasis the first part their chronic
means then, unfortunately, based on what we know today, you
are living with this disease for the rest of your life.
(03:01):
And I'll talk in a few minutes about our mission,
which is absolutely focused on a cure. But today it's
a chronic disease. It's systemic because it means that even
though psoriasis presents on your skin you see it as
a flaky, scaly, rash looking thing, it is actually present
throughout your entire body. And one of my big causes
(03:24):
is really to help our community understand that when you're
living with story eetic disease, you should be thinking about
your skin and joints, of course, but you also need
to be thinking about your heart and your other health
systems because that inflammation that you see on your skin
is likely happening in other parts of the body. And
that's why people in our community face higher rates of
(03:46):
heart attack and stroke and diabetes and other conditions because
of that systemic inflammation. And so we really want our
community to be treating their disease with one of the
many agents that are available to reduce that overall inflammation
and keep your risk of those other health conditions those
comorbidities as we call them down. And then finally, the
(04:09):
last piece of that is immune mediated. And what that
means is that there's something happening within your immune system overall.
So I'm not a doctor, I'm an attorney, but the
way that I like to think about it is your
immune system is acting up to a certain degree, and
so as we think about kind of what that means overall,
there's other health considerations that we want you talking about
(04:32):
with your.
Speaker 1 (04:32):
Doctor, you mentioned mission, what is that?
Speaker 2 (04:36):
So our mission is to drive efforts to cure sooriatic
disease and improve the lives of those affected. And I'm
really excited because on July first, we launched a new
strategic plan. So our mission is what drives us every day,
and our strategic plan is really how we live out
that mission. And if you look at our website, what
you'll see is there's lots of information there about this
(04:58):
new plan that'll guide the organization over the next five years.
And we've really doubled down on that mission. So we
only actually have two goals. One is focused on a
cure because our community wants a cure and certainly everyone
living with sooriatic disease deserves a cure. And the second
piece of that is optimizing health for everyone living with
(05:18):
soroiatic disease. Now, not in five years, not in ten years.
We've got lots of great treatment options available for our community,
regardless of what level of disease severity you have. And
so what we are focused on in the second half
of our strategic plan is really supporting all of those
pain points, all of those challenges that the community faces
(05:39):
at different times in their journey with sooriatic disease and
trying to address those so that you can reduce your disease,
reduce that inflammation, and get to the best health possible
for you today.
Speaker 1 (05:50):
So short story for me, Lea knows this and some
of our listeners do. I have rheumatoid arthritis and I've
had it since I was twenty one. Now, with all
the education and the Internet and everything else, the first
time I actually talked to Leah a couple of years ago,
I did not realize that soriasis was a part of
the r A family. There's a big umbrella, there's a lupus,
and all sorts of other autoimmune diseases out there, and
(06:13):
not funnily enough, I ironically enough, I remembered because my
dad passed away in the late seventies from cancer, there
was something different. He had ciasis, so obviously genetically I
was passed down something, not realizing that whatsoever that I
was part of the whole family of autoimmune things. And
I just got educated after talking to Leah about soriasis
(06:33):
in the Foundation, which is you know, it's comical now,
but I just I didn't know, and it really is
amazing and Leah, you don't have to list all of them,
but the umbrella of autoimmune diseases with men and women,
and once again, folks, it does not discriminate on racist colors,
or creed, sex or anything when it comes to these
autoimmune diseases. But there is a pretty large umbrella, isn't there, Leah.
Speaker 2 (06:54):
Yeah, it's really fascinating, and you're certainly not the only
one that didn't understand that the how these diseases were connected. Dennis.
It's you know, even I will say, just in the
last few years, it's been amazing to see the progress
happening scientifically, the new understandings that are constantly being discovered
every day. You know. One of the exciting things that's
(07:15):
happened since you and I first started dialoguing is that
the NIH, which is our National Institutes of Health, they
do amazing research in so many different disease states, and
they've been working on both autoimmune and I've described so
risis here today for you as immune medated, so that
umbrella of autoimmune and immune mediated diseases for a while,
(07:38):
and they've had this program that the NIH called the
Accelerating Medicines Partnership, which is really focused on bringing together
both the government as well as private researchers and patient
advocacy organizations like ours to kind of look at doing
research differently and try to unlock, you know, some more
understandings that can lead allimately to better treatments and cures
(08:02):
for so many diseases. And they had a program in
RA and lupus that dated back probably seven or eight
years now, and then about three years ago that program
actually got expanded to include soriasis and ceriatic arthritis at
Chogrin syndrome, which is also in that same family. And
(08:22):
it's you know, it's just amazing to see the research
coming out of this collaborative effort. And I have so
much hope for our community, for people living with autoimmune
and immune mediated diseases, because as they find out new
things about psoriasis or seriati arthritis or RA or lupus,
it's going to help understand what's going on in other
(08:45):
communities too. And I am incredibly optimistic about the next
few years seeing how far our community has come in
the last ten, fifteen, twenty years alone.
Speaker 1 (08:56):
Yeah, I could agree more with you, Lee, And I'm
going to get on my soapboxes for a little, but
because I do live with this disease and I've gone
through the medications and the doctors. I will tell you this,
folks in our world today, especially in the United States,
if enough people have a disease, funding is going to
go to it and they're going to get close to
a cure. And it's just plain and simple. Now, cancer
is a whole other thing, even though they're coming up
(09:17):
with some amazing things, and that's a whole nother bucket
to talk about someday, But when it comes to autoimmune diseases,
it's really you know, you can hear that, Lee and
I have something. I've got a sister that a sister
in law that has lupus. I think that it's so
prevalent in so many families now, Leah, that the awareness
is there, the funding is there, the doctors are close
(09:38):
to getting some curatives for some of these different diseases
in the umbrella family of autoimmune So I'm really encouraging.
And since I got it back in eighty seven to
where I am now, for medications and treatments, it's like
third world country stuff back then in the late eighties,
and now it's truly incredible. And this is a good
segue because I know that everybody gets freaked out if
(10:00):
they're not feeling well or something shows up in their
body that shouldn't be obviously, go to a doctor first,
But are there different levels of psoriasis? And then what
kind of treatments can you talk about? I know that
you're not a doctor, but you talk to researchers and
doctors about those, and you yourself have your personal experiences.
So can you go over that as somebody thinks that
or they get diagnosed with soriasis about what's next?
Speaker 2 (10:21):
Yeah? Absolutely, And I'm so glad you started off our
discussion talking about the fact that psoriasis and story atic
girth writists don't discriminate, because you're right, you can develop
both diseases at any age. You can be an infant,
you can be an older adult, and you can develop them.
And even what causes this is where they're still trying
to unlock the answers, right, Even what causes the disease
(10:43):
from one person to the next might be different, So
there is likely they believe a genetic component to these
immune mediated diseases. You noted that about your own family.
There's also probably some combination of environmental triggers or health triggers.
I when I tell my soriasis story, I often say
I think stress was my trigger because I developed my
(11:07):
disease in my early twenties. I was going to law school,
working full time planning a wedding, and I was just
stressed out. And looking back now decades later, there wasn't
any major health issue that happened. Although you know, I
talked to lots of people who say an infection like
strap throat was something that might have been a trigger
for them. So they're still trying to figure that out.
(11:29):
But you're right, it doesn't discriminate. And when the disease
develops and someone it's really interesting. Some people will have
more mild disease where it only impacts a small part
of their skin. There's a quick way you can kind
of figure out how much soriasis you have, which is
to take your handprint, and if you were to add
(11:50):
up all the plaques on your body into kind of
how many handprints you would cover. The number of handprints
pretty well correlates with your body surface air a percentage,
So if you've got three handprints worth of psoriasis, you
probably have about three percent body surface area impacted by csoriasis,
which in a traditional scale would be kind of more
(12:12):
mild disease. What I will say just about another advancement
has been the NPF and a group of scientists from
the International Psoriasis Council has been working on kind of
re looking at if the body surface area calculation alone
is an appropriate scale for measuring severity of disease. And
(12:34):
what we've come to understand is, and this makes a
ton of sense when you talk to someone living with psoriasis,
is that if you have sorisis on your face, or
your hands, or your genitals, those more sensitive areas, special
areas of the body, you probably have more severe disease.
And so your disease might traditionally be considered more mild,
but you probably should be treated more aggressively by a
(12:56):
physician as having more severe disease. Aditionally, speaking for people
with mild disease that didn't have a lot of body
surface area covered a topical agents, some sort of lotion
or cream was probably an appropriate treatment is still probably
an appropriate treatment for those that have more moderate to
severe disease. There are so many options available today, and
(13:18):
there's everything from phototherapy, which is a one hundred year
old on treatment that still is very effective for some
group of patients, as well as systemic agents, things that
are ingested, injected, or infused into your body and they
really work from the inside out. Going back again to
that idea of psoriasis as a systemic disease, they are
(13:39):
tackling the overall system inflammation that you have. And so
what I like to say to people today is, if
you haven't talked to a doctor recently about your psoriasis
and your treatment plan, please go see your dermatologist or
your rheumatologists, because there are so many new options that
are incredibly safe in a effective and you know, you
(14:02):
talked about kind of the old days where you know,
people were given things that were really rough on the body.
You know, they really had significant side effects and they
didn't work rate. And the good news is that the
agents available today are so much more effective. They have
so many fewer side effects, and from a Sarietty standpoint,
we can get skin clear or almost clear, which is
(14:25):
just amazing when you talk to people that were at
one time forty fifty sixty percent or more covered in
disease to know that they can get to a place
where their skin is totally clear and they can go
out in the hot DC summer in that bathing suit
and have total confidence. Is amazing.
Speaker 1 (14:41):
Well, the other thing, knowledge is power, folks. And when
I got in eighty seven, there's no internet, there's no education.
I would just expense drugs, including a cancer drug methotrexate
the people still use today. But it was brutal. I
mean I did. It was medieval back then, and I
had that blood drawn every week. I don't wanted to
start getting into the ugliness of it, but it was bad.
Just take one pill a day now and there on
(15:01):
no side effects and I feel great actually for my age.
So it really is amazing out there. I did want
to ask you just a little bit more. We don't
have to get into the weeds about this, Leah, but
I know that you're encouraged about not necessarily curatives. But
I've read enough to know that that's down the line here,
and I'm sure maybe in our lifetime there could be something.
But you talk to the researchers, you talk to the doctors.
(15:23):
What kind of amazing big breakthroughs that happened to get
you encourage about some exciting things happening over the next
five to ten years.
Speaker 2 (15:29):
Yeah, it is amazing. You know, we talk a lot
about wanting a cure and desiring a cure, and certainly
from a research standpoint, and PF we fund research. We
fund anywhere from two and a half to three and
a half million a year in research externally outside the
foundation through grants and fellowships. But it's amazing to see
the progress that researchers are making and understanding the disease.
(15:53):
And you know, I think they've really been able to
push things like you talked about the way people can
take treatments today and pills are a great option. I
talked about injectables or infuse drugs, and they've been able
to really push out through research the time between treatments
so that you know, today instead of having to do
(16:15):
an injection every week, people can go months actually between injections,
kind of pushing the time between treatments, and so that
idea of cure is super important, but also kind of
what does remission look like. That's something our research community
has been having a lot of conversations about, and how
do we know when someone's gotten to a kind of
(16:36):
medicated remission state. So it's really exciting to see where
that's going. It's been interesting even on the topical side.
We're seeing incredible durability with topicals now today, where you know,
if you've used a topical like I have, you use it,
it might help you for a few days, and then
your disease is flaring again. You know, your skin gets
(16:59):
inflamed again. We're starting to see with some of the
newer topicals the ability to put on the topical and
then that improvement can actually last for weeks and weeks,
which is something that you know prior topicals didn't have.
And so that's been a real exciting development that's just
(17:19):
happened in the last eighteen months or so in our
space with one new therapy that came out that has
that durability. So I'm really excited to see kind of
where things go with treatments. I will say, though, I
think what keeps me up at night is this idea
that not everyone in the community is experiencing these same
great outcomes. And so a big part of our push
(17:41):
through our strategic plan with optimizing health for everyone is
really thinking about what does it mean to get everyone
to better health and kind of what are sub sections
of our community struggling with and that could be access
to physicians. So I like to tell people, if you
don't have a doctor, if you're trying, if you're struggling
trying to find a position who can work with you,
(18:01):
please visit the National Psoriasis Foundation. We have a patient
Navigation center that offers free resources. Everything that they do
is free to you, and one of the things they
can help with is connecting you with a provider. We
have a provider directory where we can look up by
zip code who's in your area. We can also help
with preparing for your appointment once you get that appointment.
(18:23):
So we've got a lot of resources that help you
think about how to make the most of your time.
What are questions you want to ask? We can educate
you on the treatment options that are available. We won't
give medical advice because we're not doctors, but we can
tell you about what your physician might share with you,
so that you go in really well prepared to have
those conversations. And because this is Soriasis Action Month the
(18:47):
month of August, we have lots of resources, including a
Siasis Action Month ekit that has tips and tools to
help screen you for common diseases. Some of those things
I talked about at the beginning that are connected with
isis so that you can achieve your best overall health
and healthiest life possible.
Speaker 1 (19:06):
And we'll give the website at the end of our conversation,
but a lot of people google is sorisis dot org
and the helpline is eight hundred seven two three nine
one six six. We'll give that again and you can
google that as well. I did want to talk a
little bit more ly about Sorius's Action Month because that's
in August. What else is going on.
Speaker 2 (19:25):
Well, this is also the time where we kind of
kick off some of our community engagement activities. I think
a big part of what we've done in the entire
history of the organization has been to try to create
that community. So I want to highlight two things we're
doing through that. One is our activities on social media.
So during the month of August, as I said, we
have these resources that people can come get on our website,
(19:48):
but we're also really creating community through our social media platforms,
and so we have a this is Soriasis campaign that
you can be a part of on our social media
channels where you you can see other people's journeys, other
people's stories, learn from others in the community that have
kind of been there, done that, and come out on
the other side in a healthier way. And so we
(20:11):
try to create those opportunities for you to see what
it means to thrive with storiatic disease. And so I
invite people to connect with us on social media, join in,
share your soriasis story. We love to hear what's going
on with people and kind of where you are and
what you need to get to better help. It's also
a time where we start our all kickoff. So we
(20:35):
do activities across the country that we call Take Action Fest.
And this is a great program where people can come together, educate, advocate,
raise awareness, build community with others in their local community
that live with soriatic disease or care for or love
someone that does. And so I invite you to visit
our website, Thank you Dennis for promoting it, where people
(20:59):
can learn more about these programs. Will have nine events
throughout the fall across the country where people can come
meet others in the community. We all have one right
here in DC area, and I would love to meet
others in the community, So please come out in October
and connect with me. I'll be there with my own family,
just sharing information and helping everyone in this community to
(21:23):
get to better health.
Speaker 1 (21:24):
And some of the things we've talked about are on
the website folks, and you know I've been on a
lot of websites, especially for nonprofits when it comes to diseases,
and Leah, your team has done a great job of
systematically putting everything out and while there's a lot of
information on there, it's broken down very well about understanding,
you know, the disease watch and listen advance online treatment
(21:45):
and care, which is a really big category with lots
of sub menu support in the community that you mentioned
ways to help which we're going to talk about in
just a second. Our research is on their medical professionals
and about us. I mean, there's so much on there.
Please give my best to your team that puts together
because I know it's so much information that has to
be updated all the time. It's really truly incredible. So
(22:06):
let's talk about donations. I know that's really important to
you and I'd like to know and for our listeners
about how they can donate. And then also I know
there might be some small, medium, large business owners that
may be cerisis or somewhere in that umbrella of the
family of crisis is touched their family or a coworker
or a friend, and maybe how they can also partner
up with Eliah. So let's let's talk about all that.
Speaker 2 (22:28):
Absolutely well. We are a nonprofit and so as you know, Dennis,
we rely on donations to do all these amazing programs,
to put out all those resources on our website, and
to fund this really impactful research. And so we're grateful
for every dollar that we receive at the NPF, and
you know, we'll take every donation, whether that's the five
dollars a month donation or the larger major gift. And
(22:51):
so you can donate through our website. You can also
donate by mail or through even through things like Facebook
and other social media platforms, and so please do consider
donating to the National Crisis Foundation. We're a four star
rated Charity Navigator organization and I'm incredibly proud of the
(23:12):
way we focus each dollar that we raise on our
mission and so appreciate anyone's consideration there For business owners
or others that might have the ability to sponsor ANDPF activities.
These take Action programs across the country have a sponsorship
element where people can sponsor the event and get promotion
(23:32):
of your business, and so I would love to connect
with you. You could do that again through the website learn more.
We've got lots of information about different sponsorship levels and
what that entails. And just are grateful for the way
the community has really rallied behind the NPF and supports
us to do all this important work.
Speaker 1 (23:50):
So what's next? I know that you're always thinking forward,
and I know there's a lot going on out there.
You've got Sorices Action. What's happening now? You talked about
take Action in the fall. What else is happening with
you and your team and the foundation.
Speaker 2 (24:03):
Yeah, there's so many things going on. I'd love to
come back and visit in a few months and share
more about those programs. That sounds great. The next thing
after kind of this period, later in the fall, we'll
have Worldsoriasis Day, which is every October twenty ninth, So
I encourage people to kind of check out what we're
doing on social media. Then we'll be talking a lot
(24:23):
about family. That's kind of our theme for this event
this year, and you talked about kind of the way
these diseases really pop up in families, and so it's
super important for us that we support families. One of
the things we didn't get a lot of time to
talk about today, but I often share, is really the
mental health impact of storiatic disease. We've got a lot
(24:43):
of data on the way living with psoriasis and soartic
arthritis really challenge people in our community, and we know
that rates of anxiety and depression are incredibly high. The
suicide ideation data is startling for our communities about double
the general population. And you know, one of the particular
(25:04):
concerns I have is mental health for the younger segment
of our population that live with storiatic disease. And as
a mom of teens and younger kids too, I know
that there's so many challenges just of getting through the
teen years, that the childhood years, as any kid has,
but then when you add in a chronic disease, and
(25:26):
especially one that's visible, that can present a whole other
host of challenges. And so we talk a lot about
the importance of mental health. We've got a lot of
resources on our website for children and families and you'll
hear us talking about that certainly as part of kind
of how we support the overall family during October and
World's Arisis Day. But there's always something new going on
(25:49):
at the NPF, and our Patient Navigation Center that we
talked about earlier has new resources every month, so I
encourage folks to sign up for our emails so you
can stay on top of each of those new tools
and resources as we release them.
Speaker 1 (26:03):
I'm glad you mentioned mental health, and I don't have
time to go into long stories, but I can tell
you one time, folks, after being on some of the
horrible medications early on in the late eighties that I was,
I had so much PTSD from being on medication, I
swore off and didn't take it for years, and I
still remember it was a core memory lee of driving
with my wife to a friend's a high school graduation,
(26:23):
and I was virtually on tears because I felt so
horrible every day and I didn't know what to do,
but I didn't want to go on meds, and my
mental health, beside my physical healths was suffering. It was
really making me angry, irritable, and just not a nice
person to be around, and that next day, I visited
a rheumatologist and I went to medication to change my
(26:44):
life for the better. But to your point, mental health, folks,
when you have an autoimmune disease or anything in the
umbrella of the sosiasis family or RA or anything like that,
the mental anguish that you can go through because of
the pain and not being able to quote normal human
things ever is a real thing. I'm a seventies kid,
so that means I just bucked it up all the time.
(27:05):
There's no mental health talks at all. But now that
I have a twenty two year old, that open up
the door for me that it's okay to talk about
your feelings and if you're not feeling well and getting
that address. So I'm really glad that you addressed Eliah.
Speaker 2 (27:16):
Thank you for that, well, thank you for sharing your story.
And it's unfortunately, it's something I hear from a lot
of people. You know, people that are your age, my
age kind of had had gotten their diagnosis before this,
this great advent of new options. Tell me too often, frankly,
(27:36):
that they've kind of given up hope and they you know,
they tried, they went to the doctors, they did a
bunch of things and nothing works. And that's why I
always say, please go back, just restart that discussion, because
you have no idea what's available to you today, and
I promise you it will be so much better than
what you went through years ago.
Speaker 1 (27:55):
It's really good advice. And Lee and I both have
something that you know, we hit us. We did and
expected didn't plan on it, but you have to deal
with it. And it's really the doctors, the medications, you know,
can be really incredible things out there, but mental health
is a real thing when it comes to having any
kind of these diseases. So I'm glad we did talk
about that for a little bit. So we only have
about forty five seconds left. Can you just get some
(28:15):
final thoughts and let's do the website and the helpline
number again.
Speaker 2 (28:18):
Lia. Yeah, absolutely, thank you so much. I just want
to say thank you again for allowing me to visit
with your listeners. And you know, if you are living
with soriasis or story at girthritis, or know someone who is,
please direct them to sariasis dot org. We have so
many free resources available on our website that we want
to give you so that you can get to better
(28:39):
health and during this month, this Sariasis Section month, This
is really such a great time for us to connect
with the community and to invite people to show their
support through fundraising, through getting involved. So we want to
hear from you. Join our campaign, share your this as
Sarrias's story, and I look forward to seeing you hopefully
at some event this fall.
Speaker 1 (29:00):
Standing Psoriasis dot Org Helpline eight hundred seventy three nine
one sixty six. Leah, It's always great to spend time
with you. It's a lot of fun. I'm glad that
we get to connect this way and we'll talk soon
again about the upcoming things when it comes to the foundation.
Thank you so much for joining us on community DC.
Speaker 2 (29:14):
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AD Council
Good morning, and welcome to another edition of Community DC.
I'm your host Dennis Glascow. This morning we get a
chance to bring back one of our friends, Leah Howard,
who is the president and CEO for the National Soriasis Foundation.
August is National Ciriasis Month, so what better time to
catch up and revisit with exactly what soriasis is, diagnosis,
how it's treated, research and education, and how to donate
(00:24):
them much more. For more information, head over to their
website soriasis dot org and they have a helpline at
eight hundred seven two three nine to one sixty six.
Here's my conversation with Leah. I hope you enjoy it
as much as I did. Good morning, Leah, Good morning Dunnis.
It's been a while, it has It's great to be back. Well,
it's great to have you back because Sorius's Action Month
(00:44):
is right now in August that we're going to talk about.
And while you are pretty much a regular for us
and we always appreciate your valuable time, there's always something
new when it's coming to the Crisis Foundation. So with
all that said, I'd like to do this first because
we always have a lot of new lists said, tune
into this program. Maybe haven't met you and what you
do when it comes to all the things that are
(01:06):
at the National Ciasis Foundation, Can you tell me what
exactly first the foundation does and then we'll get into
the nitty gritty and the weeds and everything.
Speaker 2 (01:13):
Yeah, absolutely, thank you. I love to introduce the Foundation
to people that haven't had a chance to meet us before.
I like to say, I think you know we're a strong,
but mighty organization that's kind of been quietly working behind
the scenes for individuals living with psoriasis and story at
a charthritis since actually the late nineteen sixties. So my
(01:34):
favorite story, our quick story about our founding is we
were actually founded by a woman in Portland, Oregon who
lived with severe psoriasis, and for her thirtieth birthday, her
husband put a little ad in the newspaper, The ore
Going In just inviting people to call this number to
share information and get resources. And in that first week
she got one hundred phone calls. And what that showed
(01:57):
her was that there were all these people in right
there in her own community who were silently, quietly struggling
with their sooriatic disease just like she was. And so
she really set out to try to change their lives
in her own life, and over the next few years
they met in libraries and at kitchen tables, formed the
(02:19):
Pariasis Society of Oregon and then became the National Psoriasis Foundation.
And so since Beverly founding of the organization, since the
late nineteen sixties, we have been serving individuals across the
United States living with ciasis and soriatic arthritis. And there's
actually just over eight million of us. I myself have
(02:40):
psoriasis and one of the people in this community. But
for those that might not be familiar, soriasis is a chronic, systemic,
immune mediated disease. So what does that mean? If you
have been diagnosed with psoriasis the first part their chronic
means then, unfortunately, based on what we know today, you
are living with this disease for the rest of your life.
(03:01):
And I'll talk in a few minutes about our mission,
which is absolutely focused on a cure. But today it's
a chronic disease. It's systemic because it means that even
though psoriasis presents on your skin you see it as
a flaky, scaly, rash looking thing, it is actually present
throughout your entire body. And one of my big causes
(03:24):
is really to help our community understand that when you're
living with story eetic disease, you should be thinking about
your skin and joints, of course, but you also need
to be thinking about your heart and your other health
systems because that inflammation that you see on your skin
is likely happening in other parts of the body. And
that's why people in our community face higher rates of
(03:46):
heart attack and stroke and diabetes and other conditions because
of that systemic inflammation. And so we really want our
community to be treating their disease with one of the
many agents that are available to reduce that overall inflammation
and keep your risk of those other health conditions those
comorbidities as we call them down. And then finally, the
(04:09):
last piece of that is immune mediated. And what that
means is that there's something happening within your immune system overall.
So I'm not a doctor, I'm an attorney, but the
way that I like to think about it is your
immune system is acting up to a certain degree, and
so as we think about kind of what that means overall,
there's other health considerations that we want you talking about
(04:32):
with your.
Speaker 1 (04:32):
Doctor, you mentioned mission, what is that?
Speaker 2 (04:36):
So our mission is to drive efforts to cure sooriatic
disease and improve the lives of those affected. And I'm
really excited because on July first, we launched a new
strategic plan. So our mission is what drives us every day,
and our strategic plan is really how we live out
that mission. And if you look at our website, what
you'll see is there's lots of information there about this
(04:58):
new plan that'll guide the organization over the next five years.
And we've really doubled down on that mission. So we
only actually have two goals. One is focused on a
cure because our community wants a cure and certainly everyone
living with sooriatic disease deserves a cure. And the second
piece of that is optimizing health for everyone living with
(05:18):
soroiatic disease. Now, not in five years, not in ten years.
We've got lots of great treatment options available for our community,
regardless of what level of disease severity you have. And
so what we are focused on in the second half
of our strategic plan is really supporting all of those
pain points, all of those challenges that the community faces
(05:39):
at different times in their journey with sooriatic disease and
trying to address those so that you can reduce your disease,
reduce that inflammation, and get to the best health possible
for you today.
Speaker 1 (05:50):
So short story for me, Lea knows this and some
of our listeners do. I have rheumatoid arthritis and I've
had it since I was twenty one. Now, with all
the education and the Internet and everything else, the first
time I actually talked to Leah a couple of years ago,
I did not realize that soriasis was a part of
the r A family. There's a big umbrella, there's a lupus,
and all sorts of other autoimmune diseases out there, and
(06:13):
not funnily enough, I ironically enough, I remembered because my
dad passed away in the late seventies from cancer, there
was something different. He had ciasis, so obviously genetically I
was passed down something, not realizing that whatsoever that I
was part of the whole family of autoimmune things. And
I just got educated after talking to Leah about soriasis
(06:33):
in the Foundation, which is you know, it's comical now,
but I just I didn't know, and it really is
amazing and Leah, you don't have to list all of them,
but the umbrella of autoimmune diseases with men and women,
and once again, folks, it does not discriminate on racist colors,
or creed, sex or anything when it comes to these
autoimmune diseases. But there is a pretty large umbrella, isn't there, Leah.
Speaker 2 (06:54):
Yeah, it's really fascinating, and you're certainly not the only
one that didn't understand that the how these diseases were connected. Dennis.
It's you know, even I will say, just in the
last few years, it's been amazing to see the progress
happening scientifically, the new understandings that are constantly being discovered
every day. You know. One of the exciting things that's
(07:15):
happened since you and I first started dialoguing is that
the NIH, which is our National Institutes of Health, they
do amazing research in so many different disease states, and
they've been working on both autoimmune and I've described so
risis here today for you as immune medated, so that
umbrella of autoimmune and immune mediated diseases for a while,
(07:38):
and they've had this program that the NIH called the
Accelerating Medicines Partnership, which is really focused on bringing together
both the government as well as private researchers and patient
advocacy organizations like ours to kind of look at doing
research differently and try to unlock, you know, some more
understandings that can lead allimately to better treatments and cures
(08:02):
for so many diseases. And they had a program in
RA and lupus that dated back probably seven or eight
years now, and then about three years ago that program
actually got expanded to include soriasis and ceriatic arthritis at
Chogrin syndrome, which is also in that same family. And
(08:22):
it's you know, it's just amazing to see the research
coming out of this collaborative effort. And I have so
much hope for our community, for people living with autoimmune
and immune mediated diseases, because as they find out new
things about psoriasis or seriati arthritis or RA or lupus,
it's going to help understand what's going on in other
(08:45):
communities too. And I am incredibly optimistic about the next
few years seeing how far our community has come in
the last ten, fifteen, twenty years alone.
Speaker 1 (08:56):
Yeah, I could agree more with you, Lee, And I'm
going to get on my soapboxes for a little, but
because I do live with this disease and I've gone
through the medications and the doctors. I will tell you this,
folks in our world today, especially in the United States,
if enough people have a disease, funding is going to
go to it and they're going to get close to
a cure. And it's just plain and simple. Now, cancer
is a whole other thing, even though they're coming up
(09:17):
with some amazing things, and that's a whole nother bucket
to talk about someday, But when it comes to autoimmune diseases,
it's really you know, you can hear that, Lee and
I have something. I've got a sister that a sister
in law that has lupus. I think that it's so
prevalent in so many families now, Leah, that the awareness
is there, the funding is there, the doctors are close
(09:38):
to getting some curatives for some of these different diseases
in the umbrella family of autoimmune So I'm really encouraging.
And since I got it back in eighty seven to
where I am now, for medications and treatments, it's like
third world country stuff back then in the late eighties,
and now it's truly incredible. And this is a good
segue because I know that everybody gets freaked out if
(10:00):
they're not feeling well or something shows up in their
body that shouldn't be obviously, go to a doctor first,
But are there different levels of psoriasis? And then what
kind of treatments can you talk about? I know that
you're not a doctor, but you talk to researchers and
doctors about those, and you yourself have your personal experiences.
So can you go over that as somebody thinks that
or they get diagnosed with soriasis about what's next?
Speaker 2 (10:21):
Yeah? Absolutely, And I'm so glad you started off our
discussion talking about the fact that psoriasis and story atic
girth writists don't discriminate, because you're right, you can develop
both diseases at any age. You can be an infant,
you can be an older adult, and you can develop them.
And even what causes this is where they're still trying
to unlock the answers, right, Even what causes the disease
(10:43):
from one person to the next might be different, So
there is likely they believe a genetic component to these
immune mediated diseases. You noted that about your own family.
There's also probably some combination of environmental triggers or health triggers.
I when I tell my soriasis story, I often say
I think stress was my trigger because I developed my
(11:07):
disease in my early twenties. I was going to law school,
working full time planning a wedding, and I was just
stressed out. And looking back now decades later, there wasn't
any major health issue that happened. Although you know, I
talked to lots of people who say an infection like
strap throat was something that might have been a trigger
for them. So they're still trying to figure that out.
(11:29):
But you're right, it doesn't discriminate. And when the disease
develops and someone it's really interesting. Some people will have
more mild disease where it only impacts a small part
of their skin. There's a quick way you can kind
of figure out how much soriasis you have, which is
to take your handprint, and if you were to add
(11:50):
up all the plaques on your body into kind of
how many handprints you would cover. The number of handprints
pretty well correlates with your body surface air a percentage,
So if you've got three handprints worth of psoriasis, you
probably have about three percent body surface area impacted by csoriasis,
which in a traditional scale would be kind of more
(12:12):
mild disease. What I will say just about another advancement
has been the NPF and a group of scientists from
the International Psoriasis Council has been working on kind of
re looking at if the body surface area calculation alone
is an appropriate scale for measuring severity of disease. And
(12:34):
what we've come to understand is, and this makes a
ton of sense when you talk to someone living with psoriasis,
is that if you have sorisis on your face, or
your hands, or your genitals, those more sensitive areas, special
areas of the body, you probably have more severe disease.
And so your disease might traditionally be considered more mild,
but you probably should be treated more aggressively by a
(12:56):
physician as having more severe disease. Aditionally, speaking for people
with mild disease that didn't have a lot of body
surface area covered a topical agents, some sort of lotion
or cream was probably an appropriate treatment is still probably
an appropriate treatment for those that have more moderate to
severe disease. There are so many options available today, and
(13:18):
there's everything from phototherapy, which is a one hundred year
old on treatment that still is very effective for some
group of patients, as well as systemic agents, things that
are ingested, injected, or infused into your body and they
really work from the inside out. Going back again to
that idea of psoriasis as a systemic disease, they are
(13:39):
tackling the overall system inflammation that you have. And so
what I like to say to people today is, if
you haven't talked to a doctor recently about your psoriasis
and your treatment plan, please go see your dermatologist or
your rheumatologists, because there are so many new options that
are incredibly safe in a effective and you know, you
(14:02):
talked about kind of the old days where you know,
people were given things that were really rough on the body.
You know, they really had significant side effects and they
didn't work rate. And the good news is that the
agents available today are so much more effective. They have
so many fewer side effects, and from a Sarietty standpoint,
we can get skin clear or almost clear, which is
(14:25):
just amazing when you talk to people that were at
one time forty fifty sixty percent or more covered in
disease to know that they can get to a place
where their skin is totally clear and they can go
out in the hot DC summer in that bathing suit
and have total confidence. Is amazing.
Speaker 1 (14:41):
Well, the other thing, knowledge is power, folks. And when
I got in eighty seven, there's no internet, there's no education.
I would just expense drugs, including a cancer drug methotrexate
the people still use today. But it was brutal. I
mean I did. It was medieval back then, and I
had that blood drawn every week. I don't wanted to
start getting into the ugliness of it, but it was bad.
Just take one pill a day now and there on
(15:01):
no side effects and I feel great actually for my age.
So it really is amazing out there. I did want
to ask you just a little bit more. We don't
have to get into the weeds about this, Leah, but
I know that you're encouraged about not necessarily curatives. But
I've read enough to know that that's down the line here,
and I'm sure maybe in our lifetime there could be something.
But you talk to the researchers, you talk to the doctors.
(15:23):
What kind of amazing big breakthroughs that happened to get
you encourage about some exciting things happening over the next
five to ten years.
Speaker 2 (15:29):
Yeah, it is amazing. You know, we talk a lot
about wanting a cure and desiring a cure, and certainly
from a research standpoint, and PF we fund research. We
fund anywhere from two and a half to three and
a half million a year in research externally outside the
foundation through grants and fellowships. But it's amazing to see
the progress that researchers are making and understanding the disease.
(15:53):
And you know, I think they've really been able to
push things like you talked about the way people can
take treatments today and pills are a great option. I
talked about injectables or infuse drugs, and they've been able
to really push out through research the time between treatments
so that you know, today instead of having to do
(16:15):
an injection every week, people can go months actually between injections,
kind of pushing the time between treatments, and so that
idea of cure is super important, but also kind of
what does remission look like. That's something our research community
has been having a lot of conversations about, and how
do we know when someone's gotten to a kind of
(16:36):
medicated remission state. So it's really exciting to see where
that's going. It's been interesting even on the topical side.
We're seeing incredible durability with topicals now today, where you know,
if you've used a topical like I have, you use it,
it might help you for a few days, and then
your disease is flaring again. You know, your skin gets
(16:59):
inflamed again. We're starting to see with some of the
newer topicals the ability to put on the topical and
then that improvement can actually last for weeks and weeks,
which is something that you know prior topicals didn't have.
And so that's been a real exciting development that's just
(17:19):
happened in the last eighteen months or so in our
space with one new therapy that came out that has
that durability. So I'm really excited to see kind of
where things go with treatments. I will say, though, I
think what keeps me up at night is this idea
that not everyone in the community is experiencing these same
great outcomes. And so a big part of our push
(17:41):
through our strategic plan with optimizing health for everyone is
really thinking about what does it mean to get everyone
to better health and kind of what are sub sections
of our community struggling with and that could be access
to physicians. So I like to tell people, if you
don't have a doctor, if you're trying, if you're struggling
trying to find a position who can work with you,
(18:01):
please visit the National Psoriasis Foundation. We have a patient
Navigation center that offers free resources. Everything that they do
is free to you, and one of the things they
can help with is connecting you with a provider. We
have a provider directory where we can look up by
zip code who's in your area. We can also help
with preparing for your appointment once you get that appointment.
(18:23):
So we've got a lot of resources that help you
think about how to make the most of your time.
What are questions you want to ask? We can educate
you on the treatment options that are available. We won't
give medical advice because we're not doctors, but we can
tell you about what your physician might share with you,
so that you go in really well prepared to have
those conversations. And because this is Soriasis Action Month the
(18:47):
month of August, we have lots of resources, including a
Siasis Action Month ekit that has tips and tools to
help screen you for common diseases. Some of those things
I talked about at the beginning that are connected with
isis so that you can achieve your best overall health
and healthiest life possible.
Speaker 1 (19:06):
And we'll give the website at the end of our conversation,
but a lot of people google is sorisis dot org
and the helpline is eight hundred seven two three nine
one six six. We'll give that again and you can
google that as well. I did want to talk a
little bit more ly about Sorius's Action Month because that's
in August. What else is going on.
Speaker 2 (19:25):
Well, this is also the time where we kind of
kick off some of our community engagement activities. I think
a big part of what we've done in the entire
history of the organization has been to try to create
that community. So I want to highlight two things we're
doing through that. One is our activities on social media.
So during the month of August, as I said, we
have these resources that people can come get on our website,
(19:48):
but we're also really creating community through our social media platforms,
and so we have a this is Soriasis campaign that
you can be a part of on our social media
channels where you you can see other people's journeys, other
people's stories, learn from others in the community that have
kind of been there, done that, and come out on
the other side in a healthier way. And so we
(20:11):
try to create those opportunities for you to see what
it means to thrive with storiatic disease. And so I
invite people to connect with us on social media, join in,
share your soriasis story. We love to hear what's going
on with people and kind of where you are and
what you need to get to better help. It's also
a time where we start our all kickoff. So we
(20:35):
do activities across the country that we call Take Action Fest.
And this is a great program where people can come together, educate, advocate,
raise awareness, build community with others in their local community
that live with soriatic disease or care for or love
someone that does. And so I invite you to visit
our website, Thank you Dennis for promoting it, where people
(20:59):
can learn more about these programs. Will have nine events
throughout the fall across the country where people can come
meet others in the community. We all have one right
here in DC area, and I would love to meet
others in the community, So please come out in October
and connect with me. I'll be there with my own family,
just sharing information and helping everyone in this community to
(21:23):
get to better health.
Speaker 1 (21:24):
And some of the things we've talked about are on
the website folks, and you know I've been on a
lot of websites, especially for nonprofits when it comes to diseases,
and Leah, your team has done a great job of
systematically putting everything out and while there's a lot of
information on there, it's broken down very well about understanding,
you know, the disease watch and listen advance online treatment
(21:45):
and care, which is a really big category with lots
of sub menu support in the community that you mentioned
ways to help which we're going to talk about in
just a second. Our research is on their medical professionals
and about us. I mean, there's so much on there.
Please give my best to your team that puts together
because I know it's so much information that has to
be updated all the time. It's really truly incredible. So
(22:06):
let's talk about donations. I know that's really important to
you and I'd like to know and for our listeners
about how they can donate. And then also I know
there might be some small, medium, large business owners that
may be cerisis or somewhere in that umbrella of the
family of crisis is touched their family or a coworker
or a friend, and maybe how they can also partner
up with Eliah. So let's let's talk about all that.
Speaker 2 (22:28):
Absolutely well. We are a nonprofit and so as you know, Dennis,
we rely on donations to do all these amazing programs,
to put out all those resources on our website, and
to fund this really impactful research. And so we're grateful
for every dollar that we receive at the NPF, and
you know, we'll take every donation, whether that's the five
dollars a month donation or the larger major gift. And
(22:51):
so you can donate through our website. You can also
donate by mail or through even through things like Facebook
and other social media platforms, and so please do consider
donating to the National Crisis Foundation. We're a four star
rated Charity Navigator organization and I'm incredibly proud of the
(23:12):
way we focus each dollar that we raise on our
mission and so appreciate anyone's consideration there For business owners
or others that might have the ability to sponsor ANDPF activities.
These take Action programs across the country have a sponsorship
element where people can sponsor the event and get promotion
(23:32):
of your business, and so I would love to connect
with you. You could do that again through the website learn more.
We've got lots of information about different sponsorship levels and
what that entails. And just are grateful for the way
the community has really rallied behind the NPF and supports
us to do all this important work.
Speaker 1 (23:50):
So what's next? I know that you're always thinking forward,
and I know there's a lot going on out there.
You've got Sorices Action. What's happening now? You talked about
take Action in the fall. What else is happening with
you and your team and the foundation.
Speaker 2 (24:03):
Yeah, there's so many things going on. I'd love to
come back and visit in a few months and share
more about those programs. That sounds great. The next thing
after kind of this period, later in the fall, we'll
have Worldsoriasis Day, which is every October twenty ninth, So
I encourage people to kind of check out what we're
doing on social media. Then we'll be talking a lot
(24:23):
about family. That's kind of our theme for this event
this year, and you talked about kind of the way
these diseases really pop up in families, and so it's
super important for us that we support families. One of
the things we didn't get a lot of time to
talk about today, but I often share, is really the
mental health impact of storiatic disease. We've got a lot
(24:43):
of data on the way living with psoriasis and soartic
arthritis really challenge people in our community, and we know
that rates of anxiety and depression are incredibly high. The
suicide ideation data is startling for our communities about double
the general population. And you know, one of the particular
(25:04):
concerns I have is mental health for the younger segment
of our population that live with storiatic disease. And as
a mom of teens and younger kids too, I know
that there's so many challenges just of getting through the
teen years, that the childhood years, as any kid has,
but then when you add in a chronic disease, and
(25:26):
especially one that's visible, that can present a whole other
host of challenges. And so we talk a lot about
the importance of mental health. We've got a lot of
resources on our website for children and families and you'll
hear us talking about that certainly as part of kind
of how we support the overall family during October and
World's Arisis Day. But there's always something new going on
(25:49):
at the NPF, and our Patient Navigation Center that we
talked about earlier has new resources every month, so I
encourage folks to sign up for our emails so you
can stay on top of each of those new tools
and resources as we release them.
Speaker 1 (26:03):
I'm glad you mentioned mental health, and I don't have
time to go into long stories, but I can tell
you one time, folks, after being on some of the
horrible medications early on in the late eighties that I was,
I had so much PTSD from being on medication, I
swore off and didn't take it for years, and I
still remember it was a core memory lee of driving
with my wife to a friend's a high school graduation,
(26:23):
and I was virtually on tears because I felt so
horrible every day and I didn't know what to do,
but I didn't want to go on meds, and my
mental health, beside my physical healths was suffering. It was
really making me angry, irritable, and just not a nice
person to be around, and that next day, I visited
a rheumatologist and I went to medication to change my
(26:44):
life for the better. But to your point, mental health, folks,
when you have an autoimmune disease or anything in the
umbrella of the sosiasis family or RA or anything like that,
the mental anguish that you can go through because of
the pain and not being able to quote normal human
things ever is a real thing. I'm a seventies kid,
so that means I just bucked it up all the time.
(27:05):
There's no mental health talks at all. But now that
I have a twenty two year old, that open up
the door for me that it's okay to talk about
your feelings and if you're not feeling well and getting
that address. So I'm really glad that you addressed Eliah.
Speaker 2 (27:16):
Thank you for that, well, thank you for sharing your story.
And it's unfortunately, it's something I hear from a lot
of people. You know, people that are your age, my
age kind of had had gotten their diagnosis before this,
this great advent of new options. Tell me too often, frankly,
(27:36):
that they've kind of given up hope and they you know,
they tried, they went to the doctors, they did a
bunch of things and nothing works. And that's why I
always say, please go back, just restart that discussion, because
you have no idea what's available to you today, and
I promise you it will be so much better than
what you went through years ago.
Speaker 1 (27:55):
It's really good advice. And Lee and I both have
something that you know, we hit us. We did and
expected didn't plan on it, but you have to deal
with it. And it's really the doctors, the medications, you know,
can be really incredible things out there, but mental health
is a real thing when it comes to having any
kind of these diseases. So I'm glad we did talk
about that for a little bit. So we only have
about forty five seconds left. Can you just get some
(28:15):
final thoughts and let's do the website and the helpline
number again.
Speaker 2 (28:18):
Lia. Yeah, absolutely, thank you so much. I just want
to say thank you again for allowing me to visit
with your listeners. And you know, if you are living
with soriasis or story at girthritis, or know someone who is,
please direct them to sariasis dot org. We have so
many free resources available on our website that we want
to give you so that you can get to better
(28:39):
health and during this month, this Sariasis Section month, This
is really such a great time for us to connect
with the community and to invite people to show their
support through fundraising, through getting involved. So we want to
hear from you. Join our campaign, share your this as
Sarrias's story, and I look forward to seeing you hopefully
at some event this fall.
Speaker 1 (29:00):
Standing Psoriasis dot Org Helpline eight hundred seventy three nine
one sixty six. Leah, It's always great to spend time
with you. It's a lot of fun. I'm glad that
we get to connect this way and we'll talk soon
again about the upcoming things when it comes to the foundation.
Thank you so much for joining us on community DC.
Speaker 2 (29:14):
Thank you I killed so clean the oceans and make
the world better. Please learn more at she Can Stems.
A message ropped you by the ad Council.
Speaker 3 (29:31):
There's danger out there. It lurks on highways and quiet
neighborhood streets. It's more likely to kill you than a
shark and more terrifying than the biggest snake. Distracted driving
claims lives every day. Every notification, swipe, social post, video
or selfie while driving risks your life.
Speaker 2 (29:48):
So While you might.
Speaker 3 (29:49):
Think public speaking or the zombie apocalypse is scary, what's
really terrifying and even deadly is distracted driving. Ies Forward,
Don't Drive Distracted. Brought to you by NITZA and the
AD Council
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