October 21, 2025 • 29 mins
Community DC Host Dennis Glasgow visits with the Founder of Family Heart Foundation Katherine Wilemon. The Family Heart Foundation works to save families from heart disease by identifying genetic risks like Familial Hypercholesterolemia (FH) and elevated Lipoprotein(a) (Lp(a)), advocating for better care, and educating the public and medical community.
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Episode Transcript
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Speaker 1 (00:04):
Good morning, and welcome to another edition of Community d C.
I'm your HOSTNS Glasgow. This morning, we welcome to the
program for the first time. Catherine Wilma's the founder and
CEO for the Family Heart Foundation, which works to say
families from heart disease by increasing early diagnosis and improving
care for FH and also elevated lipoprotein A also known
as LP LITTLEA. It accomplishes this through research, education and
(00:28):
patient advocation. We'll also speak with one of the Foundation's ambassadors,
Gail Titus, and her personal story as well. Here's my
conversation with Catherine and Gail. I hope you find it
educational and enjoy it as much as I did.
Speaker 2 (00:40):
Good morning, Catherine, Hi Dennis, nice to see you.
Speaker 1 (00:43):
It's nice to see you and have you on Community
DC for the first time ever. And since I've found
out about our conversation, I've learned a lot about Family
Heart Foundation. And I'm always an aged Catherine because I
talked to so many different nonprofits out there and people
that have things happen to them and when they do,
they handle it, but then they decided to take it
(01:04):
up to another level and come up with their own
foundation like you did, which is really incredible. So I
set the table a little bit, probably didn't do a
good justice in our open about Family Heart Foundation. I'd
love to hear your story because it really is truly
extraordinary what happened to you when you were thirty nine
years of age and all hell broke loose. I know
a lot's happened since then, but please share your journey
(01:26):
and your story with our listeners if you could.
Speaker 2 (01:28):
Absolutely so you know.
Speaker 3 (01:32):
I was out gardening one day my husband and I
lived in the Hollywood Hills, and I developed crushing chest
pain and I called nine to one one because I
had always had high cholesterol, so I was worried instantly
that I might be having a heart attack.
Speaker 2 (01:49):
And when the paramedics.
Speaker 3 (01:50):
Arrived, they really, honestly Dennis said to me, there's no
way you're having a heart attack. Maybe if it's your husband,
because imagine I'm a thirty nine year old woman.
Speaker 2 (01:59):
And in fact I was having a heart attack.
Speaker 3 (02:03):
And it took me two subsequent years after that event
to learn that the reason why was because I have
two genetic conditions, one called familial hypercholesterolemia that causes high
LDL cholesterol from birth, and the other one high LP
little A, which is also a genetic condition and it's
(02:25):
very similar to cholesterol and causes premature cardiovascular disease.
Speaker 2 (02:31):
When I finally met.
Speaker 3 (02:33):
A specialist two years later and received the diagnosis and
understood what I was facing, I also learned how many
people had similar challenges becoming diagnosed. At the time, it
was estimated that about five percent of people with these
(02:55):
genetic dyslipidemias had ever been diagnosed.
Speaker 2 (03:00):
So I decided that this was my life.
Speaker 3 (03:04):
Calling and the opportunity to help millions of people across
the United States get a diagnosis, understand their condition, understand
that it's a family condition, that their family needs to
be screened, and be empowered. I know you know this,
(03:25):
and probably many of your listeners know this. Heart disease
continues to be the single biggest threat or the number
one cause of death and illness in the United States,
So it's really very serious for people to understand whether
they are born at risk for it.
Speaker 1 (03:46):
Well, what I'd like to do is we will get
into the weeds a little bit, and I do want
to find out about your mission and your vision when
it comes to Family Heart Foundation. But I think we
should do this first and educationally, because I know there's
a number a le of different things that can happen
to people, and a few have happened to you. I'd
like you to talk a little bit more about the
genetic part of it and how people can get it,
(04:06):
and also when it comes to treatment and diagnosing and
all that specifically to your journey, so you can kind
of help our listeners kind of go through what it
took for you to do and what you take now
on how your lifestyle is. Could you kind of share
that with us as well?
Speaker 3 (04:21):
Sure, so, high lp LITOA is genetic, and about one
in five people in the United States are estimated to
have high lp LITOA. But what we know is that
less than five percent have ever been screened for it.
And you inherit it from one of your parents, or
(04:44):
you could inherit it from both your parents because it's
so common and it causes cardiovascular disease to begin very
early in life. It causes clotting, it causes plaque formation,
and causes inflammation, and so there are therapies that you
(05:05):
can take to reduce your risk. And really what's key though,
is time. The sooner that you know whether you're at risk.
The sooner you can go on therapies that are very
easy to take and can protect you, and the sooner
you can have your family members screened.
Speaker 1 (05:23):
So when it comes to treatments and medications, that's and
we'll talk about that a little bit more, but when
it comes to screening, and it's a little staggering that
one in five people will have this and I didn't
know that, so I'm learning as we go here too,
and that's kind of a staggering number and a little
scary for everybody. It's probably listening, but to be preventedi
of what's the easy thing you can do when you
(05:43):
go to your doctor to get screened and say, hey, listen,
I need to check this out.
Speaker 3 (05:49):
So the challenge with high O p LITOA is that
it is not part of the common lipid panel or
cholesterol screening that most doctors.
Speaker 2 (05:58):
Do, so even though we've known about it for.
Speaker 3 (06:01):
About sixty years, it hasn't been integrated into regular screening.
So one thing you can do is you can ask
your physician or nurse practitioner to screen your high LP
LITA if they say, well, we've already screened your cholesterol
that's not the same and you need to get an
explicit different test for high olp litoa. It is screened
(06:23):
through a simple blood test and you don't have to
be fasting. The other option is, for example, one of
the things that we offer is a program called cholesterolconnect
dot org so that people can go online, they can
order a simple kit that'll come to their house where
they can do a fingerprick and it will screen for
lp lita as well as LDL levels, and that is
(06:47):
all free of charge, and then we help people to
understand what their levels mean, whether they got their level
screened at their physician's office or through a program like hours.
Speaker 2 (06:57):
Because it's also.
Speaker 3 (06:58):
Really important to realize is that the medical community isn't
highly educated currently about high lp littoa. So if a
physician says to you, you know, there's nothing we can
do about that right now. There are no therapies directly
to treat it, which is true today. There are no
therapies to treat it directly, so we're not going to
(07:18):
screen for it. That part does not make sense because
in Europe they are recommending that every person be screened,
and there are now some guidelines in the United states
that also recommend that every person be screened, and there
are things you can do. You can lower your LDL cholesterol,
you can do other things to reduce your risk and
(07:41):
tell there are therapies.
Speaker 1 (07:44):
So I want to talk about the origin story of
Family Heart Foundation. And when I've talked to wonderful people
like you that have had something happen and then they've
started a nonprofit or foundation, usually one of two things
come up, the other one to help a lot of people,
and or they found out how appalling it is that
what they have has not been instituted educationally correctly, or
(08:05):
the medical system is not handling it correctly, and there's
just a big giant hole in the industry. When you
decided to after what had happened to you, how long
did it take to think about starting the foundation and
why did you start it?
Speaker 3 (08:18):
So I started the foundation about four years after my event,
and it was for all of the reasons that you named, Dennis.
I mean, for one, I had always wanted to help
people and always wanted to make a difference. And I
can remember saying to my husband when I discovered the
(08:39):
how systematic some of the problems were in terms of diagnosis,
and care for these genetic dyslipidemias.
Speaker 2 (08:45):
I said, you know, this is it, this is.
Speaker 3 (08:48):
My calling, and I feel really honored to have the
opportunity to help as many people as we have been
able to help through the Family Heart Foundation over the
last fourteen years. And I think that we just we
have to remember that there is so science is progressing
so quickly in medicine right now that it is challenging
(09:12):
for clinicians to keep up with all the new information.
And unfortunately, the healthcare system in the United States is
very fragmented and the incentives.
Speaker 2 (09:23):
Are not aligned. And I know you know this.
Speaker 3 (09:25):
I mean, payers are not incentivized to prioritize prevention. And
we've become very good at helping people if they have
a cardiovascular disease event hopefully survive. It used to be
that fifty percent of people died from their first heart attack.
Now it's about thirty percent. So it's still not a
(09:47):
risk you want to take. And there have been improvements
and that's really incredible. But really the opportunity with cardiovascular
disease as the number one killer in the United States
and cause it illness and suffering, is to prevent it.
Speaker 2 (10:03):
And what is so exciting about a genetic.
Speaker 3 (10:06):
Condition like HIGHOLP litoa is that we can find out
before disease begins, or in the early stages of disease
who's at risk, and there are things we can do
today that can help them to slow down that risk
or to completely eradicate it in some cases. And if
(10:28):
I may say, there are clinical trials that are in
late stages for therapies for LP LITLEA, there are multiple
trials and so in the next couple of years we
will have therapies to treat this directly. But change doesn't
happen quickly if ninety five percent of people have never
been screened. Think of the work ahead of us to
(10:51):
have everyone who is impacted understanding that they have this risk,
so that when the therapies are available, they can take them.
Speaker 1 (11:01):
There is a lot I want to talk about on
the other side, but I want to give you an
opportunity just to introduce our next guest, Gail Titus, who's
a patient ambassador when it comes to Family Heart Foundation.
Just a little bit about Gail, who was going to
share her story with us, but how you two got
connected in her being a part of the foundation.
Speaker 3 (11:21):
So It's been terrific to know Gail now for quite
some few years, maybe like five years. And she came
to us after she had had a stroke, which is
terribly scary and is a form of cardiovascular disease and
was referred to us through a specialist, and we have
(11:43):
been on this journey with her to better understand why
she would have a stroke, the cardiovascular disease that ran
in her family, and to see her time and time
again be willing to step up as a community member,
to help others, to be on our private facebok book
page and moderate it, or to advocate on Capitol Hill.
(12:04):
So it's really been an honor to work with Gail
as a Family Heart ambassador.
Speaker 1 (12:08):
I'm standing. Here's my conversation with Gail right now. Good morning, Gail.
Speaker 2 (12:12):
Good morning Dennis.
Speaker 1 (12:13):
Well, it's a pleasure to have you on Community DC.
And we've just been talking to Catherine about her story
and of course everything that comes to Family Heart Foundation,
and we're going to get back to him just a moment.
But I know that the Family Heart Foundation is really
big in your life, and you've got your own story,
so I was hoping you could share with our listeners.
Speaker 4 (12:29):
I would be happy to Dennis Well. The topic is
LP little A and I do live every day with
high elevated life of protein A. At the age of
thirty seven, a paternal cousin was told by a cardiologist
that she had high lived the protein A at the
recommendation of her doctor. My cousin told as many relatives
(12:54):
as possible, including me, because high LP little A is
genetic and runs in families. I got screened and that's
when I found out that I had high LP LITTLEA. Unfortunately,
my father died of a fatal heart attack at the
age of fifty eight, and that was seven years before
(13:19):
I learned that I had elevated like a protein A.
My father did not know that he had LP LITTLEA.
And of course LP LILA is a major risk factor
of cardiovascular disease.
Speaker 1 (13:36):
So Gale, one of the things that we find out
in this series is we talked to different nonprofits, especially
that have to do with diseases that you know, knowledge
is power. And with that said, when you found out
and you started to do your own research and talk
to doctors, what were next steps for you? What did
you learn and what did you have to do?
Speaker 2 (13:53):
Well, I would say.
Speaker 4 (13:53):
My next steps were to reach out to a specialist.
I did very purpose fully reach out to a lipidologist.
And again the cousin that told me about her story
with elevated like a protein a had reached out to.
Speaker 5 (14:10):
The University of Pennsylvania, and so I really followed her
lead on that and did visit the preventive cardiology team,
and the stars really aligned for me because when I
did visit the University of Pennsylvania, as it turns out,
there was a medical.
Speaker 4 (14:29):
Student that was working along with the Family Heart Foundation,
and that student just happened to be there the day
that I was at the preventive cardiology visit, and the
medical student asked if I had heard about the Family
Heart Foundation, which at the time I had not, and
(14:52):
the student gave me the website, and from there, when
I got home, I logged on to the website and
I read about the various educational offerings that the Family
Heart Organization has, and I also found out about a
global summit that is held annually and I attended the
(15:15):
summit and that is where I met Family Heart Ambassadors,
and I I met various members of the medical community,
scientific community, and I really began to learn more about
elevated lipoprotein A and then also too, it just gave
(15:36):
me just the opportunity to have a sense of community
with people who really understood.
Speaker 3 (15:42):
Yeah.
Speaker 1 (15:43):
We always talk in this series too about when you
have something, you always feel like you're on an island
by yourself and I'm the only person that has this.
But when you have a chance to relate with other
human beings on the planet that have what you have,
it kind of settles you down that I'm not in
this fight by myself. What's day to day life with
you now when it comes to medications and also managing it,
And then I want to talk to you about being
(16:04):
a patient ambassador.
Speaker 4 (16:05):
I would say day today, medication management has been quite
a journey.
Speaker 2 (16:11):
For me personally.
Speaker 4 (16:13):
And I say that because, as you may have heard
that the term statin is very very common when cholesterol
has to be treated, and I just happen to be
the type of patient that is statin intolerant. So that's
what made my journey a little trickier. And fortunately, because
(16:37):
there are just so many medicinal therapies that are now available,
I'm in much better shape than I was a few
years ago. Because there are medications called PCSK nine inhibitors.
There are medications that are available now that are not statins,
(16:58):
and so I'm on a combination of the PCSK nine
I that I mentioned and two other statins as non statins,
I'm sorry, two other medications that are not statins, and
I'm finally in what we like to call I'm in
a good LDL.
Speaker 2 (17:17):
I'm in my LDL safe zone.
Speaker 4 (17:18):
That's the term that I was looking for, and that's
really the place where one likes to be, especially when
you have a diagnosis of high like a protein A.
It's very important to be in that LDL safe zone.
Speaker 1 (17:32):
Well, very good, Well, listen, I wanted to finish out
with being a patient ambassador, and one of the things
that I always find cool is that when life throws
you a curveball, some people decide to not only deal
with that, but step up and then pay it forward,
which is what you're doing as a patient ambassador when
it comes to Family Heart Foundation. Can you tell us
how this relationship works for you.
Speaker 4 (17:50):
Well, I'm very pleased to say that I did attend
Family Heart Ambassador training in Washington, DC in twenty twenty
and as a Family Heart Foundation ambassador.
Speaker 2 (18:03):
I educate others.
Speaker 4 (18:04):
I encourage people to find out about their numbers and
to do something about their numbers if they are elevated.
There is really so much misinformation about elevated like a
protein A and so I do help to moderate a
Facebook page so that people can get credible information about it.
(18:26):
I help to build trust and help people find additional
resources and information. I share my story with others who
may be going through the same journey. I share my
story at scientific meetings and other settings such as the
Academy of Managed Care Pharmacy and as a matter of fact,
Academy of Managed Care Pharmacy the acronym is ACMP. There
(18:51):
will be a meeting held in National Hardware in a
couple of weeks, so I'm looking forward to sharing my
story there because it's very important that advocacy be done
for those members of the community who pay for care. Yeah.
Speaker 1 (19:10):
Yeah, I couldn't agree more. Gail, it's so nice that
you could spend some time with us in sharing your story.
Thank you so much for joining us on Community DC.
We really appreciate it.
Speaker 2 (19:18):
You're very welcome.
Speaker 4 (19:18):
Dennis, thank you all right.
Speaker 1 (19:20):
Catherine. We had a great talk with Gail, and she's
got an unbelievable story, and I imagine you've got handfuls of
stories like that. I love it. You know when something
really just terrible happens to people, but they decide to
join in and pay it forward. And I think Gail
is one of those handfuls of people that is doing
that as an ambassador. If somebody wants to be a
patient ambassador, is there kind of a process? Can you
(19:42):
kind of share how that maybe works?
Speaker 2 (19:43):
Sure so, Pete.
Speaker 3 (19:45):
On our website familyheart dot org, people can go and
there's an application that if they can fill out if
that's their preference, or they can call the main office
and say, you know, here's my story.
Speaker 2 (19:57):
I'd love to be a part of the solution. How
could I do that?
Speaker 3 (20:00):
And then we'll connect them with a live person who
can talk with them about how they might fit in.
Speaker 2 (20:06):
We do train.
Speaker 3 (20:07):
People who step up as an ambassador in the science
and in some of the problems and solutions that we
are working on, and then we often provide opportunities for
them to tell their stories to different stakeholders because what
we see is, you know, you need data, you need
the science, but also we all need to remember that
(20:29):
these data points, this science, it all tracks back to
a human or a family of people. And I think
that's been one of the strategies that I'm very proud
of as an organization is as a research and advocacy organization,
we've been able to serve people and we've been able
to really make the case for why we need to
(20:53):
do better as a society in preventing cardiovascular disease.
Speaker 1 (20:57):
Well, that's a good segue for talking about advocation mentioned
in a couple of times. That's something that we had
also brought up to Gale two. When it comes to
knowledge is power, and that's exactly what you're doing. So
beside getting the word out there to just about everybody
when you go to either Capitol Hill, when you're trying
to get the message out to all the people out
there that may or may not be affected by this,
what does that look like right now?
Speaker 3 (21:17):
So we do a lot of publishing for scientists and clinicians,
and then we take those publications and we translate them
into lay persons language so that we can share them
with business people like those who run healthcare systems or payers,
but also so that we can share them with the
(21:40):
general public to say, you know what's exciting about these
genetic dyslipidemias like LP littlea, is that we're going to
have solutions for them. We have solutions for genetic high cholesterol,
and very soon we're going to have solutions for genetic
high LP litlea. And the fact that high LP litlea
(22:02):
is so common. Again, one in five people in the
general population would have it, but then you have someone
like Gail who is of African descent and is a female,
and that means that she is likely to have the
highest LP litlea. Because if you're of African descent, one
in three people would have high LP litlea. If you're
(22:23):
a female, you're more likely to have even higher levels
of LP litlea. So we're able to as an organization
go out also into those communities that are of the
highest risk. So we're going out to communities of people
where there are more people who are Black or more
people who are South Asian because those are two higher
(22:44):
risk populations where it's closer to one in three. So
really going to decision makers, but also grassroots. You know,
it's important that we empower, as you said, the people,
because it's individual people who have to advocate for themselves
on a daily basis. And also, Dennis, I think it's
really critical that people become part of their medical care team,
(23:09):
that they understand their condition and the medication they're supposed
to take, because they have to make the decision to
take that and participate in their care.
Speaker 4 (23:19):
Right.
Speaker 1 (23:19):
And you know, Catherine, I want to go back to
what you first talked about when it came to blood screening.
It really caught my attention. I bet it did for
our listeners too. That the normal blood screening that we
give at our general practitioner doesn't cover what you've been
talking about, So you've got to advocate for yourself too, right.
Speaker 3 (23:35):
That's absolutely true. Normal lipid screening for high cholesterol and
triglycerides does not include LP little a screening, so you
have to ask specifically for it.
Speaker 1 (23:49):
Let's talk about funding, because I know you've got to donate.
Button we want to talk about and whether it's a
one time gift or a regular one monthly. And also
we have a lot of listeners that own small, medium
and large businesses. If anybody wants to be a part
of the organization, either donate one time, maybe put on
an event with you or any kind of large donation.
Speaker 3 (24:07):
How do they all do that well, We would be
thrilled to have more people leaning in on this cause.
They can go to Familyheart dot org and they can
write us at Contactfamilyheart dot org.
Speaker 2 (24:22):
They can call the office. We really work with a
lot of.
Speaker 3 (24:26):
Sponsors, as you said, to put on awareness events, to
offer free screening in their community or even.
Speaker 2 (24:33):
For their employees.
Speaker 3 (24:34):
And we really welcome the resources because there are so
many people who yet are yet to be diagnosed and
understand how to help themselves and their families.
Speaker 1 (24:44):
One of the things that I've talked to my listeners
about on Community DC and they know my story because
I've had rumatorialthritis since I was twenty one. Now, I
got that back in eighty seven, as you can imagine,
with no Internet, no social media, no education, know nothing.
It was awful. So when somebody gets today, it's a
lot different. The same with what you have in some
of the other people in Gale And everything's changing now
(25:05):
because we have the Internet, we have incredible doctors out
there in treatments. With all that said, I did read
a little bit more on your bio about the clinical
trials in the next five to ten years are going
to be paramount as you talk to researchers and doctors
and all the things that you've learned, Catherine about what
you're doing today with your team, what does the future
look like in the next five to ten years.
Speaker 3 (25:26):
So the future for cardiovascular disease prevention looks incredibly bright
if we prioritize it. The key, the biggest barrier that
stands between someone's health and an early disease today is diagnosis.
Speaker 2 (25:43):
We really need everyone.
Speaker 3 (25:45):
Everyone should be screened for high LP litoay, regardless of
whether we have a family history or not, and regardless
of whether or not you are from one of these
higher risk groups like people of African descent or South Asian,
because it affects all all races and ethnicities. But I
think it's really really bright because if we can get
people to take a simple blood test and to understand
(26:09):
these numbers, if your LP litle A is higher, if
it is one hundred and twenty five animals per liter or.
Speaker 2 (26:16):
Higher, then then you're at high risk.
Speaker 3 (26:19):
And the interesting thing about LP litlea is that it's
ninety percent genetically driven.
Speaker 2 (26:25):
So it's a very simple equation.
Speaker 3 (26:27):
If it's high you have a mutation, you're at risk,
and then therapies will be coming out that currently show
Dennis the ability to lower LP LITOA.
Speaker 2 (26:38):
The current.
Speaker 3 (26:40):
Medicines that are in late stage clinical trials anywhere from
eighty percent to ninety six or ninety eight percent, so
dramatically able to lower those levels, and hopefully we'll see
in the clinical trials that will mean protecting people from
cardiobasc or disease.
Speaker 1 (26:57):
Well, that's pretty extraordinary, and speaking of medicines, and I
realize that everybody's different because there is an umbrella of
what you can get here, but maybe to your journey
and you specifically people wanting to know. So I have this,
this happened to me. What kind of lifestyle do you have?
What kind of medications? If you can't share with us,
you don't have to, but what's lifestyle like for you?
Right now?
Speaker 2 (27:17):
I'm happy to you know.
Speaker 3 (27:18):
I prioritize what would be considered a heart healthy lifestyle.
I make sure that I walk and exercise every day
as much as I can. When I'm sitting too long,
I stand up because we all know that's important. Now,
you know, I've told my daughters who also have inherited
the condition. They can never smoke under any condition, under
(27:40):
any circumstances anything. And I eat a Mediterranean diet and
I take three medications on a regular basis currently to
lower my LDL and one of those medications also has
does lower l P. That's not its indication, but it
(28:03):
also does lower LP little a not as much as
the medications that'll be coming out to affect it directly.
But it's really a very easy lifestyle to live.
Speaker 2 (28:15):
Once you wrap your head around it.
Speaker 1 (28:18):
So, Catherine, we just have a couple of minutes left.
I'd love to get some final thoughts from you. We'll
give the website one more time, also how to donate
be a part of Familyheart Foundation. And by the way, though,
whoever designed the website, there's a lot of information on there,
and it's beautiful and it's easy to navigate, so I
want to let everybody know that there's a lot on
there to digest, but it's easy to kind of move
around a little bit. And maybe if you have any
(28:39):
upcoming events, but just maybe some final thoughts from you,
and then we'll give the website and then we'll finish up.
But the floor is yours.
Speaker 3 (28:45):
Thank you, so much, Dennis. If someone would like to
learn more about LP LITTLEA and what they can do
about it, they can go to find LPA dot org.
That'll take them directly to the page where they'll find
a lot about LP LITTLEA. And I would just say
that to remember that everyone should be screened for LP
(29:07):
LITTLEA and you can really help yourself to understand if
you're at risk or not for one of the leading
causes of illness and death, and that.
Speaker 2 (29:16):
It's really a story of hope.
Speaker 3 (29:18):
If you find out that you're impacted by this condition
within now and in the next few years, there's going
to be a lot that you can do to help
yourself and your family.
Speaker 1 (29:30):
All right, well, listen, I'm glad we had you in
the program. Catherine. It's just so a pleasure to meet you.
And once again I started this conversation by saying, I'm
in awe of people where something really brutal happens, they
handle that part of it, but then they take it
the next level to help other people out there. What
you've done when it comes to familyheart foundations. So you're
doing terrific work with your team. I want to stay
in touch with you, but thank you so much for
(29:51):
your time and we really appreciate you joining us on
community DC.
Speaker 2 (29:54):
Thank you
Good morning, and welcome to another edition of Community d C.
I'm your HOSTNS Glasgow. This morning, we welcome to the
program for the first time. Catherine Wilma's the founder and
CEO for the Family Heart Foundation, which works to say
families from heart disease by increasing early diagnosis and improving
care for FH and also elevated lipoprotein A also known
as LP LITTLEA. It accomplishes this through research, education and
(00:28):
patient advocation. We'll also speak with one of the Foundation's ambassadors,
Gail Titus, and her personal story as well. Here's my
conversation with Catherine and Gail. I hope you find it
educational and enjoy it as much as I did.
Speaker 2 (00:40):
Good morning, Catherine, Hi Dennis, nice to see you.
Speaker 1 (00:43):
It's nice to see you and have you on Community
DC for the first time ever. And since I've found
out about our conversation, I've learned a lot about Family
Heart Foundation. And I'm always an aged Catherine because I
talked to so many different nonprofits out there and people
that have things happen to them and when they do,
they handle it, but then they decided to take it
(01:04):
up to another level and come up with their own
foundation like you did, which is really incredible. So I
set the table a little bit, probably didn't do a
good justice in our open about Family Heart Foundation. I'd
love to hear your story because it really is truly
extraordinary what happened to you when you were thirty nine
years of age and all hell broke loose. I know
a lot's happened since then, but please share your journey
(01:26):
and your story with our listeners if you could.
Speaker 2 (01:28):
Absolutely so you know.
Speaker 3 (01:32):
I was out gardening one day my husband and I
lived in the Hollywood Hills, and I developed crushing chest
pain and I called nine to one one because I
had always had high cholesterol, so I was worried instantly
that I might be having a heart attack.
Speaker 2 (01:49):
And when the paramedics.
Speaker 3 (01:50):
Arrived, they really, honestly Dennis said to me, there's no
way you're having a heart attack. Maybe if it's your husband,
because imagine I'm a thirty nine year old woman.
Speaker 2 (01:59):
And in fact I was having a heart attack.
Speaker 3 (02:03):
And it took me two subsequent years after that event
to learn that the reason why was because I have
two genetic conditions, one called familial hypercholesterolemia that causes high
LDL cholesterol from birth, and the other one high LP
little A, which is also a genetic condition and it's
(02:25):
very similar to cholesterol and causes premature cardiovascular disease.
Speaker 2 (02:31):
When I finally met.
Speaker 3 (02:33):
A specialist two years later and received the diagnosis and
understood what I was facing, I also learned how many
people had similar challenges becoming diagnosed. At the time, it
was estimated that about five percent of people with these
(02:55):
genetic dyslipidemias had ever been diagnosed.
Speaker 2 (03:00):
So I decided that this was my life.
Speaker 3 (03:04):
Calling and the opportunity to help millions of people across
the United States get a diagnosis, understand their condition, understand
that it's a family condition, that their family needs to
be screened, and be empowered. I know you know this,
(03:25):
and probably many of your listeners know this. Heart disease
continues to be the single biggest threat or the number
one cause of death and illness in the United States,
So it's really very serious for people to understand whether
they are born at risk for it.
Speaker 1 (03:46):
Well, what I'd like to do is we will get
into the weeds a little bit, and I do want
to find out about your mission and your vision when
it comes to Family Heart Foundation. But I think we
should do this first and educationally, because I know there's
a number a le of different things that can happen
to people, and a few have happened to you. I'd
like you to talk a little bit more about the
genetic part of it and how people can get it,
(04:06):
and also when it comes to treatment and diagnosing and
all that specifically to your journey, so you can kind
of help our listeners kind of go through what it
took for you to do and what you take now
on how your lifestyle is. Could you kind of share
that with us as well?
Speaker 3 (04:21):
Sure, so, high lp LITOA is genetic, and about one
in five people in the United States are estimated to
have high lp LITOA. But what we know is that
less than five percent have ever been screened for it.
And you inherit it from one of your parents, or
(04:44):
you could inherit it from both your parents because it's
so common and it causes cardiovascular disease to begin very
early in life. It causes clotting, it causes plaque formation,
and causes inflammation, and so there are therapies that you
(05:05):
can take to reduce your risk. And really what's key though,
is time. The sooner that you know whether you're at risk.
The sooner you can go on therapies that are very
easy to take and can protect you, and the sooner
you can have your family members screened.
Speaker 1 (05:23):
So when it comes to treatments and medications, that's and
we'll talk about that a little bit more, but when
it comes to screening, and it's a little staggering that
one in five people will have this and I didn't
know that, so I'm learning as we go here too,
and that's kind of a staggering number and a little
scary for everybody. It's probably listening, but to be preventedi
of what's the easy thing you can do when you
(05:43):
go to your doctor to get screened and say, hey, listen,
I need to check this out.
Speaker 3 (05:49):
So the challenge with high O p LITOA is that
it is not part of the common lipid panel or
cholesterol screening that most doctors.
Speaker 2 (05:58):
Do, so even though we've known about it for.
Speaker 3 (06:01):
About sixty years, it hasn't been integrated into regular screening.
So one thing you can do is you can ask
your physician or nurse practitioner to screen your high LP
LITA if they say, well, we've already screened your cholesterol
that's not the same and you need to get an
explicit different test for high olp litoa. It is screened
(06:23):
through a simple blood test and you don't have to
be fasting. The other option is, for example, one of
the things that we offer is a program called cholesterolconnect
dot org so that people can go online, they can
order a simple kit that'll come to their house where
they can do a fingerprick and it will screen for
lp lita as well as LDL levels, and that is
(06:47):
all free of charge, and then we help people to
understand what their levels mean, whether they got their level
screened at their physician's office or through a program like hours.
Speaker 2 (06:57):
Because it's also.
Speaker 3 (06:58):
Really important to realize is that the medical community isn't
highly educated currently about high lp littoa. So if a
physician says to you, you know, there's nothing we can
do about that right now. There are no therapies directly
to treat it, which is true today. There are no
therapies to treat it directly, so we're not going to
(07:18):
screen for it. That part does not make sense because
in Europe they are recommending that every person be screened,
and there are now some guidelines in the United states
that also recommend that every person be screened, and there
are things you can do. You can lower your LDL cholesterol,
you can do other things to reduce your risk and
(07:41):
tell there are therapies.
Speaker 1 (07:44):
So I want to talk about the origin story of
Family Heart Foundation. And when I've talked to wonderful people
like you that have had something happen and then they've
started a nonprofit or foundation, usually one of two things
come up, the other one to help a lot of people,
and or they found out how appalling it is that
what they have has not been instituted educationally correctly, or
(08:05):
the medical system is not handling it correctly, and there's
just a big giant hole in the industry. When you
decided to after what had happened to you, how long
did it take to think about starting the foundation and
why did you start it?
Speaker 3 (08:18):
So I started the foundation about four years after my event,
and it was for all of the reasons that you named, Dennis.
I mean, for one, I had always wanted to help
people and always wanted to make a difference. And I
can remember saying to my husband when I discovered the
(08:39):
how systematic some of the problems were in terms of diagnosis,
and care for these genetic dyslipidemias.
Speaker 2 (08:45):
I said, you know, this is it, this is.
Speaker 3 (08:48):
My calling, and I feel really honored to have the
opportunity to help as many people as we have been
able to help through the Family Heart Foundation over the
last fourteen years. And I think that we just we
have to remember that there is so science is progressing
so quickly in medicine right now that it is challenging
(09:12):
for clinicians to keep up with all the new information.
And unfortunately, the healthcare system in the United States is
very fragmented and the incentives.
Speaker 2 (09:23):
Are not aligned. And I know you know this.
Speaker 3 (09:25):
I mean, payers are not incentivized to prioritize prevention. And
we've become very good at helping people if they have
a cardiovascular disease event hopefully survive. It used to be
that fifty percent of people died from their first heart attack.
Now it's about thirty percent. So it's still not a
(09:47):
risk you want to take. And there have been improvements
and that's really incredible. But really the opportunity with cardiovascular
disease as the number one killer in the United States
and cause it illness and suffering, is to prevent it.
Speaker 2 (10:03):
And what is so exciting about a genetic.
Speaker 3 (10:06):
Condition like HIGHOLP litoa is that we can find out
before disease begins, or in the early stages of disease
who's at risk, and there are things we can do
today that can help them to slow down that risk
or to completely eradicate it in some cases. And if
(10:28):
I may say, there are clinical trials that are in
late stages for therapies for LP LITLEA, there are multiple
trials and so in the next couple of years we
will have therapies to treat this directly. But change doesn't
happen quickly if ninety five percent of people have never
been screened. Think of the work ahead of us to
(10:51):
have everyone who is impacted understanding that they have this risk,
so that when the therapies are available, they can take them.
Speaker 1 (11:01):
There is a lot I want to talk about on
the other side, but I want to give you an
opportunity just to introduce our next guest, Gail Titus, who's
a patient ambassador when it comes to Family Heart Foundation.
Just a little bit about Gail, who was going to
share her story with us, but how you two got
connected in her being a part of the foundation.
Speaker 3 (11:21):
So It's been terrific to know Gail now for quite
some few years, maybe like five years. And she came
to us after she had had a stroke, which is
terribly scary and is a form of cardiovascular disease and
was referred to us through a specialist, and we have
(11:43):
been on this journey with her to better understand why
she would have a stroke, the cardiovascular disease that ran
in her family, and to see her time and time
again be willing to step up as a community member,
to help others, to be on our private facebok book
page and moderate it, or to advocate on Capitol Hill.
(12:04):
So it's really been an honor to work with Gail
as a Family Heart ambassador.
Speaker 1 (12:08):
I'm standing. Here's my conversation with Gail right now. Good morning, Gail.
Speaker 2 (12:12):
Good morning Dennis.
Speaker 1 (12:13):
Well, it's a pleasure to have you on Community DC.
And we've just been talking to Catherine about her story
and of course everything that comes to Family Heart Foundation,
and we're going to get back to him just a moment.
But I know that the Family Heart Foundation is really
big in your life, and you've got your own story,
so I was hoping you could share with our listeners.
Speaker 4 (12:29):
I would be happy to Dennis Well. The topic is
LP little A and I do live every day with
high elevated life of protein A. At the age of
thirty seven, a paternal cousin was told by a cardiologist
that she had high lived the protein A at the
recommendation of her doctor. My cousin told as many relatives
(12:54):
as possible, including me, because high LP little A is
genetic and runs in families. I got screened and that's
when I found out that I had high LP LITTLEA. Unfortunately,
my father died of a fatal heart attack at the
age of fifty eight, and that was seven years before
(13:19):
I learned that I had elevated like a protein A.
My father did not know that he had LP LITTLEA.
And of course LP LILA is a major risk factor
of cardiovascular disease.
Speaker 1 (13:36):
So Gale, one of the things that we find out
in this series is we talked to different nonprofits, especially
that have to do with diseases that you know, knowledge
is power. And with that said, when you found out
and you started to do your own research and talk
to doctors, what were next steps for you? What did
you learn and what did you have to do?
Speaker 2 (13:53):
Well, I would say.
Speaker 4 (13:53):
My next steps were to reach out to a specialist.
I did very purpose fully reach out to a lipidologist.
And again the cousin that told me about her story
with elevated like a protein a had reached out to.
Speaker 5 (14:10):
The University of Pennsylvania, and so I really followed her
lead on that and did visit the preventive cardiology team,
and the stars really aligned for me because when I
did visit the University of Pennsylvania, as it turns out,
there was a medical.
Speaker 4 (14:29):
Student that was working along with the Family Heart Foundation,
and that student just happened to be there the day
that I was at the preventive cardiology visit, and the
medical student asked if I had heard about the Family
Heart Foundation, which at the time I had not, and
(14:52):
the student gave me the website, and from there, when
I got home, I logged on to the website and
I read about the various educational offerings that the Family
Heart Organization has, and I also found out about a
global summit that is held annually and I attended the
(15:15):
summit and that is where I met Family Heart Ambassadors,
and I I met various members of the medical community,
scientific community, and I really began to learn more about
elevated lipoprotein A and then also too, it just gave
(15:36):
me just the opportunity to have a sense of community
with people who really understood.
Speaker 3 (15:42):
Yeah.
Speaker 1 (15:43):
We always talk in this series too about when you
have something, you always feel like you're on an island
by yourself and I'm the only person that has this.
But when you have a chance to relate with other
human beings on the planet that have what you have,
it kind of settles you down that I'm not in
this fight by myself. What's day to day life with
you now when it comes to medications and also managing it,
And then I want to talk to you about being
(16:04):
a patient ambassador.
Speaker 4 (16:05):
I would say day today, medication management has been quite
a journey.
Speaker 2 (16:11):
For me personally.
Speaker 4 (16:13):
And I say that because, as you may have heard
that the term statin is very very common when cholesterol
has to be treated, and I just happen to be
the type of patient that is statin intolerant. So that's
what made my journey a little trickier. And fortunately, because
(16:37):
there are just so many medicinal therapies that are now available,
I'm in much better shape than I was a few
years ago. Because there are medications called PCSK nine inhibitors.
There are medications that are available now that are not statins,
(16:58):
and so I'm on a combination of the PCSK nine
I that I mentioned and two other statins as non statins,
I'm sorry, two other medications that are not statins, and
I'm finally in what we like to call I'm in
a good LDL.
Speaker 2 (17:17):
I'm in my LDL safe zone.
Speaker 4 (17:18):
That's the term that I was looking for, and that's
really the place where one likes to be, especially when
you have a diagnosis of high like a protein A.
It's very important to be in that LDL safe zone.
Speaker 1 (17:32):
Well, very good, Well, listen, I wanted to finish out
with being a patient ambassador, and one of the things
that I always find cool is that when life throws
you a curveball, some people decide to not only deal
with that, but step up and then pay it forward,
which is what you're doing as a patient ambassador when
it comes to Family Heart Foundation. Can you tell us
how this relationship works for you.
Speaker 4 (17:50):
Well, I'm very pleased to say that I did attend
Family Heart Ambassador training in Washington, DC in twenty twenty
and as a Family Heart Foundation ambassador.
Speaker 2 (18:03):
I educate others.
Speaker 4 (18:04):
I encourage people to find out about their numbers and
to do something about their numbers if they are elevated.
There is really so much misinformation about elevated like a
protein A and so I do help to moderate a
Facebook page so that people can get credible information about it.
(18:26):
I help to build trust and help people find additional
resources and information. I share my story with others who
may be going through the same journey. I share my
story at scientific meetings and other settings such as the
Academy of Managed Care Pharmacy and as a matter of fact,
Academy of Managed Care Pharmacy the acronym is ACMP. There
(18:51):
will be a meeting held in National Hardware in a
couple of weeks, so I'm looking forward to sharing my
story there because it's very important that advocacy be done
for those members of the community who pay for care. Yeah.
Speaker 1 (19:10):
Yeah, I couldn't agree more. Gail, it's so nice that
you could spend some time with us in sharing your story.
Thank you so much for joining us on Community DC.
We really appreciate it.
Speaker 2 (19:18):
You're very welcome.
Speaker 4 (19:18):
Dennis, thank you all right.
Speaker 1 (19:20):
Catherine. We had a great talk with Gail, and she's
got an unbelievable story, and I imagine you've got handfuls of
stories like that. I love it. You know when something
really just terrible happens to people, but they decide to
join in and pay it forward. And I think Gail
is one of those handfuls of people that is doing
that as an ambassador. If somebody wants to be a
patient ambassador, is there kind of a process? Can you
(19:42):
kind of share how that maybe works?
Speaker 2 (19:43):
Sure so, Pete.
Speaker 3 (19:45):
On our website familyheart dot org, people can go and
there's an application that if they can fill out if
that's their preference, or they can call the main office
and say, you know, here's my story.
Speaker 2 (19:57):
I'd love to be a part of the solution. How
could I do that?
Speaker 3 (20:00):
And then we'll connect them with a live person who
can talk with them about how they might fit in.
Speaker 2 (20:06):
We do train.
Speaker 3 (20:07):
People who step up as an ambassador in the science
and in some of the problems and solutions that we
are working on, and then we often provide opportunities for
them to tell their stories to different stakeholders because what
we see is, you know, you need data, you need
the science, but also we all need to remember that
(20:29):
these data points, this science, it all tracks back to
a human or a family of people. And I think
that's been one of the strategies that I'm very proud
of as an organization is as a research and advocacy organization,
we've been able to serve people and we've been able
to really make the case for why we need to
(20:53):
do better as a society in preventing cardiovascular disease.
Speaker 1 (20:57):
Well, that's a good segue for talking about advocation mentioned
in a couple of times. That's something that we had
also brought up to Gale two. When it comes to
knowledge is power, and that's exactly what you're doing. So
beside getting the word out there to just about everybody
when you go to either Capitol Hill, when you're trying
to get the message out to all the people out
there that may or may not be affected by this,
what does that look like right now?
Speaker 3 (21:17):
So we do a lot of publishing for scientists and clinicians,
and then we take those publications and we translate them
into lay persons language so that we can share them
with business people like those who run healthcare systems or payers,
but also so that we can share them with the
(21:40):
general public to say, you know what's exciting about these
genetic dyslipidemias like LP littlea, is that we're going to
have solutions for them. We have solutions for genetic high cholesterol,
and very soon we're going to have solutions for genetic
high LP litlea. And the fact that high LP litlea
(22:02):
is so common. Again, one in five people in the
general population would have it, but then you have someone
like Gail who is of African descent and is a female,
and that means that she is likely to have the
highest LP litlea. Because if you're of African descent, one
in three people would have high LP litlea. If you're
(22:23):
a female, you're more likely to have even higher levels
of LP litlea. So we're able to as an organization
go out also into those communities that are of the
highest risk. So we're going out to communities of people
where there are more people who are Black or more
people who are South Asian because those are two higher
(22:44):
risk populations where it's closer to one in three. So
really going to decision makers, but also grassroots. You know,
it's important that we empower, as you said, the people,
because it's individual people who have to advocate for themselves
on a daily basis. And also, Dennis, I think it's
really critical that people become part of their medical care team,
(23:09):
that they understand their condition and the medication they're supposed
to take, because they have to make the decision to
take that and participate in their care.
Speaker 4 (23:19):
Right.
Speaker 1 (23:19):
And you know, Catherine, I want to go back to
what you first talked about when it came to blood screening.
It really caught my attention. I bet it did for
our listeners too. That the normal blood screening that we
give at our general practitioner doesn't cover what you've been
talking about, So you've got to advocate for yourself too, right.
Speaker 3 (23:35):
That's absolutely true. Normal lipid screening for high cholesterol and
triglycerides does not include LP little a screening, so you
have to ask specifically for it.
Speaker 1 (23:49):
Let's talk about funding, because I know you've got to donate.
Button we want to talk about and whether it's a
one time gift or a regular one monthly. And also
we have a lot of listeners that own small, medium
and large businesses. If anybody wants to be a part
of the organization, either donate one time, maybe put on
an event with you or any kind of large donation.
Speaker 3 (24:07):
How do they all do that well, We would be
thrilled to have more people leaning in on this cause.
They can go to Familyheart dot org and they can
write us at Contactfamilyheart dot org.
Speaker 2 (24:22):
They can call the office. We really work with a
lot of.
Speaker 3 (24:26):
Sponsors, as you said, to put on awareness events, to
offer free screening in their community or even.
Speaker 2 (24:33):
For their employees.
Speaker 3 (24:34):
And we really welcome the resources because there are so
many people who yet are yet to be diagnosed and
understand how to help themselves and their families.
Speaker 1 (24:44):
One of the things that I've talked to my listeners
about on Community DC and they know my story because
I've had rumatorialthritis since I was twenty one. Now, I
got that back in eighty seven, as you can imagine,
with no Internet, no social media, no education, know nothing.
It was awful. So when somebody gets today, it's a
lot different. The same with what you have in some
of the other people in Gale And everything's changing now
(25:05):
because we have the Internet, we have incredible doctors out
there in treatments. With all that said, I did read
a little bit more on your bio about the clinical
trials in the next five to ten years are going
to be paramount as you talk to researchers and doctors
and all the things that you've learned, Catherine about what
you're doing today with your team, what does the future
look like in the next five to ten years.
Speaker 3 (25:26):
So the future for cardiovascular disease prevention looks incredibly bright
if we prioritize it. The key, the biggest barrier that
stands between someone's health and an early disease today is diagnosis.
Speaker 2 (25:43):
We really need everyone.
Speaker 3 (25:45):
Everyone should be screened for high LP litoay, regardless of
whether we have a family history or not, and regardless
of whether or not you are from one of these
higher risk groups like people of African descent or South Asian,
because it affects all all races and ethnicities. But I
think it's really really bright because if we can get
people to take a simple blood test and to understand
(26:09):
these numbers, if your LP litle A is higher, if
it is one hundred and twenty five animals per liter or.
Speaker 2 (26:16):
Higher, then then you're at high risk.
Speaker 3 (26:19):
And the interesting thing about LP litlea is that it's
ninety percent genetically driven.
Speaker 2 (26:25):
So it's a very simple equation.
Speaker 3 (26:27):
If it's high you have a mutation, you're at risk,
and then therapies will be coming out that currently show
Dennis the ability to lower LP LITOA.
Speaker 2 (26:38):
The current.
Speaker 3 (26:40):
Medicines that are in late stage clinical trials anywhere from
eighty percent to ninety six or ninety eight percent, so
dramatically able to lower those levels, and hopefully we'll see
in the clinical trials that will mean protecting people from
cardiobasc or disease.
Speaker 1 (26:57):
Well, that's pretty extraordinary, and speaking of medicines, and I
realize that everybody's different because there is an umbrella of
what you can get here, but maybe to your journey
and you specifically people wanting to know. So I have this,
this happened to me. What kind of lifestyle do you have?
What kind of medications? If you can't share with us,
you don't have to, but what's lifestyle like for you?
Right now?
Speaker 2 (27:17):
I'm happy to you know.
Speaker 3 (27:18):
I prioritize what would be considered a heart healthy lifestyle.
I make sure that I walk and exercise every day
as much as I can. When I'm sitting too long,
I stand up because we all know that's important. Now,
you know, I've told my daughters who also have inherited
the condition. They can never smoke under any condition, under
(27:40):
any circumstances anything. And I eat a Mediterranean diet and
I take three medications on a regular basis currently to
lower my LDL and one of those medications also has
does lower l P. That's not its indication, but it
(28:03):
also does lower LP little a not as much as
the medications that'll be coming out to affect it directly.
But it's really a very easy lifestyle to live.
Speaker 2 (28:15):
Once you wrap your head around it.
Speaker 1 (28:18):
So, Catherine, we just have a couple of minutes left.
I'd love to get some final thoughts from you. We'll
give the website one more time, also how to donate
be a part of Familyheart Foundation. And by the way, though,
whoever designed the website, there's a lot of information on there,
and it's beautiful and it's easy to navigate, so I
want to let everybody know that there's a lot on
there to digest, but it's easy to kind of move
around a little bit. And maybe if you have any
(28:39):
upcoming events, but just maybe some final thoughts from you,
and then we'll give the website and then we'll finish up.
But the floor is yours.
Speaker 3 (28:45):
Thank you, so much, Dennis. If someone would like to
learn more about LP LITTLEA and what they can do
about it, they can go to find LPA dot org.
That'll take them directly to the page where they'll find
a lot about LP LITTLEA. And I would just say
that to remember that everyone should be screened for LP
(29:07):
LITTLEA and you can really help yourself to understand if
you're at risk or not for one of the leading
causes of illness and death, and that.
Speaker 2 (29:16):
It's really a story of hope.
Speaker 3 (29:18):
If you find out that you're impacted by this condition
within now and in the next few years, there's going
to be a lot that you can do to help
yourself and your family.
Speaker 1 (29:30):
All right, well, listen, I'm glad we had you in
the program. Catherine. It's just so a pleasure to meet you.
And once again I started this conversation by saying, I'm
in awe of people where something really brutal happens, they
handle that part of it, but then they take it
the next level to help other people out there. What
you've done when it comes to familyheart foundations. So you're
doing terrific work with your team. I want to stay
in touch with you, but thank you so much for
(29:51):
your time and we really appreciate you joining us on
community DC.
Speaker 2 (29:54):
Thank you
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