Episode Transcript
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The Social Good Magazine is designed to inspire others to make a difference in
their communities.
Created by Kristen Thomasino.
This Show and Magazine Showcases the stories of people making a positive
impact in their neighborhoods.
And beyond, whether it's through volunteering fund raising or simply
lending a helping hand.
These individuals remind us that we can all make a difference.
(00:25):
The Social Good Magazine is the perfect tool for anyone seeking inspiration to
get involved in their community.
Actually, the magic Show is talking about different advocacy efforts
and different topics that affect lots of people.
And one of those topics is fibromyalgia.
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And crystal and I are both advocates for this because we both experience it
and have been formerly diagnosed with it.
One of the ways that I actually met crystal was doing fibromyalgia
advocacy in 2022.
And I also was doing lots of different research on various organizations that
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were just focused on
providing
support and solutions and ideas of ways to think about
tackling chronic illness in a positive way.
And I came across crystal Kent, and she is just
a fireball.
She is such an amazing person
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from what she's accomplished in her life.
So, crystal, thank you for joining me.
I know that the weather's been up and down, so that does expect that's fiber
warriors at times.
And that is a great point to bring up.
If there were a lot of victories that happened
in 2022
for this cause of wellness, and thinking about how we unify our resources
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to better serve our patient population,
can you tell me a little bit about some of these victories that happened in 2022?
I am very humbled that you say victories, especially because it really
is a community effort of a variety of individuals who have made these
victories successful.
So I can't take the whole credit, but
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some great things was.
Well, first,
I was able with team members of veteran voices for fibromyalsha
put out a series of informational, educational videos,
hashtag, team fibral reloaded, which are
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all accessible for free on social media, on YouTube.
it was just a wonderful,
just amazing project to bring on
licensed medical doctors,
health and wellness coaches, certified functional medicine
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coach specialists, and
along with remote voices in other communities outside of veteran
and Fibromyalgia communities, where they
shared their aspects, like dynamics of having
particular chronic illnesses such as lubas and five or Miles ago that has a
long family lineage.
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And why this kind of ties into why we need more specific German research for
babra milesia.
So
yeah, that project,
it is a victory, but it did not come to fruition without so many people coming
together and freely and voluntarily
giving their time to participate and be interviewed.
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So for me,
there's lots of things I love.
But that was kind of like my baby, my pet project, in a sense, because I just
felt it was so important to bring so many voices together,
along with licensed medical professionals, just to Show,
like, the chronic pain community, the fiber malega community and veteran
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community, like there are people invested that want to support us.
It sounds like you've made a remarkable
team effort
of unifying information
resources
so that people know that others are experiencing it.
That is real.
But great news.
You're not alone.
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There are others out there that are unifying and finding some solutions
that can help them
with their suffering.
What I love what crystal has highlighted and done here with this
team is saying, look, we're going to make sure
that this information
and people are available
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247,
so that you can get in contact.
That's fantastic.
So,
way to go.
Team fibro reloaded.
Let's talk about this.
You mentioned
how
there's some legislative work and other advocacy work, and I was a little bit
of part of some of that last year helping out.
But you guys were really leading the forefront on this, and the chart and
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the organization
on these ideas, about how we can change the game for the American population.
Yeah, this is a fibromyalgia
is a global condition.
We've seen it in other countries, right?
You know, a lot of stuff here will be talking while it's padromalgia
related, kind of more specific to veterans.
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But just the sidebar.
I have my other kind of awareness initiative, the fiber Miles of pain
criticles.
And I have individuals.
I actually just went recently encountered, so
I had the individuals living with fiber Miles yet, or a loved one with someone
with five Miles, or a caregiver from 37 countries.
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And I just had some of Malta.
I was surprised.
I'm like, I've all got some warriors here and friends now from Malta in
Europe.
And that was amazing.
Really good global
too.
So your efforts, and what you're trying to do is really try to have a global
approach, but right now we're focusing, especially, like what's happened,
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with some American leadership right in our own backyard.
Tell me about what the leadership here in America, what are we trying to
change here?
One of the greatest things I have been able to observe and be a part of is a
lot of grassroots veterans individually coming together to
promote awareness and work collaboratively
to get some policy changes at the va or legislation put in place
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to help
serve, support and protect our veterans.
And what's great about that, too, is that approach we're seeing in the five
Miles of community over the past few years.
Is that recognizing that we don't have to be this big organization,
corporation or entity to
invoke change, that we can come together as a coalition
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and bring our individual voices together like a chorus and a choir, and
amplify everyone's voices.
And
the other sidebar to that, that is beautiful
is that it's also one of the most inclusive approaches for advocacy and awareness.
A lot of times
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I see
big organizations
trying to put out information or awareness or
make some changes, but then we have these individual advocates and grassroots,
advocacy initiatives who are not being included.
And so
that's really
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not being fully diverse
and inclusive.
And when I meet by diverse and inclusive, inclusivity is not just
based on
color, age, sex, sexual learning, tape, tatian or
identification, but also age groups.
I know personally through my initiatives and awareness and
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educational like videos and campaigns
pulling in individuals that
are under the age of nineteen years old.
Because with fibromyalgia,
one to two percent of five remal sufferers or children in adolescents,
along with pulling in men and amplifying their voices.
And then on the flip side, in the veteran side,
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we see a lot more
initiatives, awareness campaigns and legislation, advocacy, where we're
seeing the driving floors being predominantly male veterans.
Which make sense because as far as female veterans go,
we're only 1.8
million in the big pole of the twenty
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or so million veterans.
And then
one of the nice things with these legislative and advocacy and awareness
initiatives and collaborating with each other, is we're able to amplify,
like those sub communities within our community, so that we're giving
fair space and time for everybody to contribute and amplify
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their voices.
got mute the later suit platform between tools and access and empowerment.
And then we get to the legislative.
As last year, we're looking for
a number of fifty million dollars.
Increased research spooned.
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How can that go?
And were we out with that?
Like in 2019,
house appropriation committees and funding.
It was being speculated it was going to be cut from like, fourteen million and
twelve million.
And that puts five or Miles as the second least funded
medical condition to receive funding for research through the national
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institute of health in the CDC.
So some really proactive advocates went to Washington d c in 2019,
and then early 2020,
right before Washington d c was closed down due to
a pandemic.
And so from there,
I was asked if I would help
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moving forward with this legislative initiative, where we're asking congress
and senators
to support us and be our voice
in the government and ask for.
We came to fifty million dollars last year.
In 2022, that's what we asked for
for research.
And what happened was, in 21,
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we saw the projection of, instead of funding being cut to twelve million for
five Miles of research,
it was projected to be about thirty million.
Then last year we asked for fifty million.
And we started also advocating that we have our champions help us make sure
that this funding is earmarked for very specific targeted research for five or
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minoral shot, because there is research studies out there, but we're seeing a
lot of duplication on the same research study being done over and over and
over.
But none of this is targeting
the understanding of what the root causes and how the mechanisms of the
symptoms work in the body.
So last year
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we took on a lot of meetings as a community,
meeting with our staffers for congressional leaders and senators, and
we were asking for fifty million and asking for that support for it to be
earmarked.
Now this year, personally, I'm
going to say 100 million, where I'm personally going to ask for 100 million,
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and that we have the support in our government to ensure those funds are
being used in a proactive concise manner,
so that we could start targeting and looking at all these other aspects of
fiber milegia.
Because if we can do that it's going to create a pathway,
a variety of different treatment developments,
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pharmaceutical medications, along with holistic, modern modalities
to help individuals living with this illness.
You know, one of the big changes from last year
has to do with how we
this condition.
Let me help the audience understand a little bit more about why this is
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important, what we're asking for.
So what I think of fibromyalgia
is there is tangible, physical research evidence that there is a neurological
component to this medical condition.
So much so that we started seeing research coming out around 20122013,
like the
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general hospital,
which is an affiliat of Harvard medical, doing research that found that
people of five or milesia have
small fiber neuropathy damage.
And then we saw another research study come out where people with
fibromyalgia, the retinal
nerve layer in our eyes,
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degenerated.
Then further research, not just in the us.
But in other countries,
found that
in the brain, we have some inflammation going on in particular parts of the
brain.
In all, this is very neurologically
derivative, and none.
In 2015,
October, first of 2015,
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the international classification of diseases and disorders
reclassified fibromyalgia as a neurological medical condition.
So that is a very broad stroke explanation.
And the problem is, under neurological conditions, there's these
subcategories, like, is that a disorder?
Is it a degenerative disease?
Is in an autoimmune condition,
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and that's where we're at.
We know it's neurological.
We got that classification,
but now we need to advocate for
our governmental officials,
what not, what have you?
Medical entities and tax driven health institutes that are funded with
taxpayer dollars to do that research, to find out what subcategory it is.
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And once we can do that, them will not only have better understanding,
but we can identify the appropriate medical specialty to treat people with
five Miles or.
Because what happens is we kind of get bounced around from specialties
within the medical field, from neurology, which I was seen by a
neurologist.
I was also seen by three rheumatologists and pain management,
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sometimes pain and rehabilitation medicine specialists.
And so that that's kind of the disconnect.
These titles that you just said, these are names of roles.
The people here all over the country book.
They may not understand
what the right roles are to have on a complete health team.
And sometimes you need certain roles to work together
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and to communicate to one another to create treatment pasts that make sense for
patients.
And so I think what we're trying to do here
say, look, there's areas that this community has identified that can
really make a difference in the care, as well as the identification
of people that suffer within this class
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to get access.
You've been pretty
again, busy
raising the flag, sharing information.
There was a huge win for you last year in the state of Ohio.
Why don't you tell us about the good news and what you're able to work out
there with the governor?
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Hio governor?
Mike duwein, he issued a proclamation, declaring may twelve as fabra maljah
awareness day in the state of Ohio.
In Ohio is the third state to actually issue a proclamation.
And
a lot of people might not understand why that's important.
But what it is it's like an official state level recognition that this is a
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condition that needs more public awareness and support,
especially when you look at the Numbers, as far as with ohioans,
how many people were affected and how many veterans in Ohio.
And so having kind of, like, for lack of a better term, it's almost like a
stamp of approval or stamp of legitimacy.
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And when a lot of people focus on federal level stuff, but your state
level is just as important, because
you have that recognize it that could help within that state open up funding,
or major medical institutions
shift funds to focus on fibromyalgia.
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I live outside of Cleveland Ohio, so we have
the Cleveland clinic foundation, and we have university health care system, and
we have mental health, and plenty of vas.
And a lot of these entities do their own internal research.
So having that
declaration made formally and legally,
this also puts us on these medical institutes radar, and they might be
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like, oh, we should look into this, especially because there's just this x
amount of people in Ohio that have fiber Miles
and veterans.
And most veterans actually receive private health care
nationally, versus going to the ba so that's another thing that helps break
some stereotypes, is that
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everyone believes that veterans, all veterans go to the va for health care,
and there's about twenty million of us.
And back in 2019,
the va, that year only served 892
million veterans.
Then they're veterans such as myself, which I call, we do hybrid health care,
where they go to the va for some things and then go to private health care for
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other things.
So that is something that is a major highlight as saying, oh,
we also have veterans and these other groups of people that you would think
traditionally would be going to certain systems only for their health care,
but they're also going to private health care.
So these awareness things on a local, state and federal level, helps entities,
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individuals, society and medical facilities
and researchers recognize that,
oh, ok, let's look into this.
And they shift their funding internal ain't it's some research, or maybe they
hire more staff to focus on treating people.
If I Donald
that's exciting what you just said.
That there's these different models that veterans are using to get access
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to care.
Some of them are a hybrid model, which this is important, because we're
talking about
supply and demand.
Let's be real,
not everywhere in this country is going to have access to resources.
If I put you in the middle of the desert, crystal,
in some remote place, is it likely that we're going to have access all the
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time, sometimes to specialty types of care?
And that answer typically is no.
What I'm hearing right is that in the Cleveland area, there are a number of options.
There are a number of medical groups
that are established,
doing good work already
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in trying to assist people that need care.
Because as we think about the new economy, and I like to talk about the
new economy in the social Magazine, volume two, crystal Kent is in it
sharing her thoughts.
She talked about, like the access
in the need for there to be more staff
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to help.
One of the things you just talked about was how a hybrid model has helped her,
in some instances,
get access
when the va didn't necessarily have what she had, possibly right?
So I think this is an exciting
opportunity
to
create new jobs.
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And for people who are looking, especially within the college industry,
what jobs should I get into?
High school and others,
we're talking about preventative care, as well as
chronic illness.
Care and this is kind of a new economy where when we think about, how can we
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do the right things, moving forward to help others
in these types of amazing industries,
this seems like it could be a bright spot.
And I think about
how we can make it better.
And the work that crystal kenned is doing is really saying, look,
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there's some things that, if we had a little bit more
staff,
would improve the lives of veterans.
And I think he said, what was a 2020 million?
22 million?
Was that's the number I heard?
Yeah, there's approximately
twenty million veterans currently,
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and 18 million of them are female veterans.
You bring up a very great point when you're talking about an economic model,
because in health care, it is now being run as a systematic
business model.
And people find that frustrating.
I said, look,
these are the cards that we're dealt let's let's work smart, not hard, and
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actually find ways
to
let these entities know that they're missing out on a lot of
major money
because they're not helping patients that have harder time accessing health
care.
And so let's think of this in an innovative way.
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Take out the word health care.
Take out medical it's being run like a business model.
And what do businesses wants to do?
They want to reach more people.
Reaching more people increases revenue.
Increasing revenue though, because we have a lot of businesses from banking
to the automotive industry, to healthcare, is that when they're
increasing their revenue, believe it or not,
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a lot of those entities are going to put about twenty percent and shift it
to research, or shift it to help support
those people in our communities that are not getting the access.
how do we have that conversation?
And one of those things is we come up with ideas
of innovation and health care.
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And there are so many barriers for so many groups
that need access to health care, not just veterans, not just people with
fiber Miles,
but a variety of medical communities.
And I've worked for organizations
in the mental health Fields
we actually provided community
health support and community mental health supports.
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And we took the teens to the neighborhoods, the communities, we had
mobile vehicles that are like,
they're like RVs, that are tricked out to become like a nini medical
satellite, where we're going out
and outreaching these individuals that have no ability to access care in a
timely manner.
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So
that's one of the things when we're thinking about advocacy,
we can't just say you need to provide more support, you need to have more
doctors.
We need to also come to the table with ideas and suggestions.
They might not be good ones.
Ok, I've had some bad ideas.
But hey, an idea, I'm not the type of person to say, this is a problem, fix
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it.
I'm the type of person that says, this is an issue.
Here are some possible solutions from a patient perspective that would help my
community, would help meet, how are we serving
native americans on reservations that are veterans?
How are we serving those individuals that are in rural areas?
The other thing is urban areas.
People assume that when you live in an urban area, that you have easier
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access to health care because it's a Shorter distance, but not everybody has
a car.
Many people are relying on public transportation.
They don't have day care for their kids, so they've got to bring all their
children with them.
Or an elderly
parent they're taking care of might have alzheimer's or chronic condition
that they need oversight.
And all these are barriers that, with some proactive
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innovative solutions.
We might be able to remove those, and then people have more access to health care.
So our health care system is based on a model system, on a 95
company
entity.
And we expect patients to rearrange their entire schedule or find ways to
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overcome barriers to access health care.
And it really needs to be the opposite.
I understand them running in a business model, but it really needs to be a
human services model in identifying those barriers, not just talking about
it, but working with the communities to alleviate those barriers so that more
people can access health care.
What's important in this discussion is how we look at,
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let people know that there's
resources out there.
And then there's this project that you've been doing to kind of
communicate differently
in additional other content.
Why don't you tell me about this amazing documentary
that you've been a part of, and our health and support?
Sure?
(25:45):
And again, this is
collaboration of a variety of people in to highlight
the power of social media and social
networking platforms.
Is I connected
with a retired navy veteran
who is the Co founder of a film production company called brain dagger
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films.
And just through to chat
and saying, these are some of the things that I do.
These are some of the things we're passionate about.
These are some of the things that
we want to tackle.
And so that cofounder is mo Taylor of brain dagger films, who is the retired
navy veteran.
And
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obviously I'm an army veteran.
So we are very acutely aware of the needs of the veteran community,
especially like dispelling
stigmas and stereotypes and
perceptions about invisible illnesses.
And so as we were networking on social media, we came up with this
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idea of
doing a documentary that highlights
the different aspects of being a military veteran living with invisible conditions,
and the unique experiences
that veteran's experience
living with invisible medical conditions, and the added layers, or
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barriers, of
getting the support that we need.
So
Mr.
Taylor and I kicked back a variety of ideas, and then he was like,
right of the concept.
And I was like,
for documentary
about the basically battle
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a veteran contends with
after getting out of this service, having to go to war again,
to overcome all these stereotype stigmas and lack of access for
healthcare for invisible medical conditions.
So I said, ok, i'll get that to you.
I forgot what I said, but it was like, literally in the week.
And then Mr.
Taylor was like, oh, this is great.
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And then I said, ok, well, what do you want to focus on?
Like, do you want this to be more informational?
I can pull in veterans who would be great for this.
And he was like, go for it.
So release today
is
a documentary
with brain dagger films
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about the veterans and the scourge of invisible illnesses and all how it's
kind of like we've already done our battles and served our country.
Now we're battling again
to get the recognition
and the understanding validation support in health care
that we need
for
a variety of medical conditions that are invisible.
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And so I asked
a couple of my really good friends and fellow advocates and team members
if they would collaborate on this.
And the one person is Brian talley, who is
the driving force behind the legislative
bill tally bill that was signed into law on January of 2021.
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He's also now the founder of today with tally podcasts, and he's a marine veteran
that,
out of no faults of his own, ended up experience some
pretty
extensive
medical negligence at the va, and sharing his journey and all the
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obstacles he overcame.
So I asked if he would participate
to share his personal experiences.
And then I also asked a new data, who is a combat army veteran, and she's
also part of the veteran voices for five or Miles a team,
if she would participate.
And she did.
And just like a quick little thing there that most like documentaries, or
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educational pieces about veterans, it's predominantly male veterans, you see.
So I wanted to
flip this script where we're interviewing three people, and I was
one of the three.
So in this, we had two female veterans and one mail veteran,
just to promote the importance of recognizing that female veterans
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need the support and understanding as well, and our needs are
unique, but also at times different from male veterans.
And then Bryan stevali,
he narrated
some of the informational pieces in this documentary.
So really, this is kind of like a five person team that came together
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to amplify
the voices.
Of veterans living with different
invisible medical conditions and the barriers that we contend with, and the
things that, if we could
basically address and resolve, would make it better for veterans to access
health care and get them medical support and understanding we need,
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along with highlighting the importance of why we need
support systems, along with how the role of social media placed in creating
those support systems
for veterans living with invisible disabilities.
Super
one, I just applaud you again, you're
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suffering yourself, and you find some of the space and the taunt line to give others
to learn.
So thank you for your leadership on these different projects.
When I think about Social Good, again, crystal Kent is an example of that,
that's why I've included her in the social and good Magazine Show.
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And again, when you want to learn more about what she's thinking about,
there's concrete solutions that we're putting together in this Magazine
to help others in our communities,
it's really meant to have a long term picture about what could we do
to listen to some of these advocates like crystal, who are really in the
(31:58):
trenches.
They know a lot of the details.
What could we do differently,
and we've been through a lot in our country, but I think it's important
that we continue to try to be a leader
in taking care of our own people, providing
opportunities for jobs and ways in which we can
(32:19):
help others reduce suffering.
And at the same time, how do we make these new paths forward?
So from a preventative medicine side, that people are really continuing to
keep doing well
and making progress,
and that's a big deal for some folks, right?
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And one of the big projects that I'm working on as well for veterans,
has to do with homeless.
And how do we
help get people to shelter in safety?
And security is a big thing.
And here in Los Angeles, we've had a number of challenges.
We have one of the largest veteran populations in the country,
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and there's things that we can be doing
potentially differently,
as a community to support our veterans.
And so I think that having leaders like crystal Kent, who really are subject
matter experts,
having them on my Show in these different Magazines and podcasts,
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these different ways that we're all communicating out, it really is purposeful,
right?
Kristal, we're trying to be purposeful in this act of Social Good to help others
you agreeable
intent with purposeful actions.
And I honestly apply to you
(33:43):
being out in the trenches yourself helping.
Our veterans too are experiencing homelessness.
And just a little quick tidbit is that
while there's twenty million veterans
and they're predominantly male veterans, the interesting piece when
you look at population, ratio percentage risk, is that female veterans
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and LGBTQ veterans are actually at higher risk of being homeless
than their male counterparts.
It's not to say it's not a crisis with male veterans.
But
again, it comes down to these systems not providing the support for everyone,
every sub community within the community of veterans, and there's
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other countries that have declared homelessness
as a health care crisis.
And once they did that,
it shifts funds.
So I talked about this earlier.
When certain levels of government recognize something formally and
officially, what happens is funds get shifted to address that, whether
internally or from a governmental perspective or federal
(34:48):
aspect.
And so when we do that, some of these countries that declared
homelessness as a health care crisis.
They were able to reduce
homelessness
in general
up to seventy percent.
And they declared it a health care crisis, a health crisis.
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And when you do these things
it's like legitimizing it.
It's saying,
we we, as a whole,
as a society, as a nation, as a global
citizenship, we need to
recognize this as a crisis.
And once you do these things,
that's where funding and
(35:31):
support
comes in.
The other thing is, in the United States, what frustrates me is, I
haven't looked in a while, but
when we are going through the worst of the shutdowns due to a pandemic,
we had a lot of time in our hands.
So I started going through all the nonprofits that were registered with
guide star, that were providing supports and services and funding for
(35:54):
veterans who are homeless.
And I stopped counting at 200 because I got frustrated, because I said, hey,
at about 207,
I said, I'm done.
This is just in the United States, all these nonprofits, and looking at how
much resources and funding they had.
And I thought, you know what?
If they came together nationally,
I bet you we could dramatically decrease
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homelessness amongst veterans if they came together and pulled their skill
sets, resources, funding,
they're experts in different areas
serving this veteran population.
So I just,
me, I get kind of nerdy like that.
I do this research, and I'm like
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a huge opportunity
across the long period
to unify,
to do things differently,
to allocate resources, there's prosthes that exists.
And it works in some areas somewhat, and in some areas it doesn't, because
it may not be executed, right?
And so I think that what the whole point of this Show is how we share our
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best practices and learnings rapidly
and get this information to the people that are operating on the ground.
Look, everybody's out there trying to help and do things the best they can.
But the thing that we always talk about, especially those in the
carrotically ill communities,
how you use your energy is very important.
And so as we wrap up here,
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thank you, crystal, for being on and sharing your thoughts again for part
two.
And this has just been enlightening to listen to the victories that you've
experienced with the team
and the new resources that are available.
I just see optimistic
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opportunities here, really for us to increase research and
get people realizing that.
Look,
it's ok.
There's some folks that have experienced what you're experiencing.
You're not alone
there's resources.
You've got to do work.
You've got to do the work.
But there are things that you can connect with that can potentially help
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in our communities.
So
they, if you critical for the time
again, check out her website.
We're going to have the contact information available.
And also watch the new documentary let's support.
Some veterans, these folks are getting together to share this information
because it's important to our communities.
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There's twenty million plus veterans out there that I think this message
should be shared with.
So, crystal, thank you for your time.
Thank you for what your team does,
and thank you for your service.
Ma'am?
I personally just really appreciate.
Thank you.
Now,
The Social GoodMagazine Show is produced by Thomasino Media LLC lc and
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hosted by Kristen Thomasino.
The Social Good Magazine Show is a beacon of hope for global communities,
filled with inspiring stories that illuminate pathways to success.
By sharing transformational concepts and taking action oriented steps
towards progress, we can collaborate on reducing suffering together and
enjoying the journey along the way.
So let's use this Magazine and Show, as our road map, an opportunity to guide
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each other in discovering victory over adversity