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 DC.
I'm your host NS 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
(00:28):
and 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 aug 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.
Speaker 3 (01:31):
You know.
Speaker 2 (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. And when
the paramedics arrived, they really, honestly Dennis said to me,
(01:54):
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. And in fact I was having a heart attack.
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
(02:17):
LDL cholesterol from birth and the other one high LP
little A, which is also a genetic condition, and it's
very similar to cholesterol and causes premature cardiovascular disease. When
I finally met a specialist two years later and received
the diagnosis and understood what I was facing, I also
(02:43):
learned how many people had similar challenges becoming diagnosed. At
the time, it was estimated that about five percent of
people with these genetic dyslipidemias had ever been diagnosed. So
I decided that this was my life calling and the
(03:05):
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, and probably many
(03:26):
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 in 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 2 (04:21):
Sure, So, high lp lito A 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 it causes inflammation, and so there are therapies that
(05:05):
you 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 prevented
of what's the easy thing you can do when you
(05:43):
go to your doctor to get screen and say, hey, listen,
I need to check this out.
Speaker 2 (05:49):
So the challenge with high O P LITTLEA is that
it is not part of the common lipid panel or
cholesterol screening that most doctors do, so even though we've
known about it for 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
(06:13):
screen your high LP LITLEA 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 LITA,
it is screened 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,
(06:36):
they can order a simple kit that'll come to their
house where they can do a fingerprick and it will
screen for.
Speaker 4 (06:43):
LP littera as well as LDL levels, and that is
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.
Speaker 2 (06:55):
Or through a program like hours. Because it's also really
important to realize is that the medical community isn't highly
educated currently about high LP littlea. 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
(07:16):
to treat it directly, so we're not going to 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,
(07:38):
you can do other things to reduce your risk and
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 2 (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. I said, you know,
this is it, this is 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
(09:01):
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 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
(09:23):
are not aligned. And I know you know this. 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
(09:44):
it's about thirty percent. So it's still not a 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 illness and suffering, is to prevent it. And what
is so exciting about a genetic condition like highop LITTLEA
(10:09):
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 I may say, there
are clinical trials that are in late stages for therapies
(10:33):
for LP LITLEA. They're 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 have everyone who is impacted
(10:54):
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 2 (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 face 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.
Speaker 2 (12:11):
Good morning, Gail, 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 3 (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 approtein 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
(12:50):
her doctor. My cousin told as many relatives 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
(13:10):
father died of a fatal heart attack at the age
of fifty eight, and that was seven years before 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
(13:33):
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 3 (13:53):
Well? I would say 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 the.
Speaker 5 (14:10):
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 3 (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 do it just gave
(15:36):
me just the opportunity to have a sense of community
with people who really understood. 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 do 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 3 (16:05):
I would say day today, medication management has been quite
a journey for me personally. 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 happened to be the type of patient that
(16:27):
is statin intolerant. So that's what made my journey a
little trickier. And fortunately, because 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
(16:48):
are medications called PCSK nine inhibitors. There are medications that
are available now that are not statins, and so I'm
on a combination of the PCSK nine I that I
mentioned and two other statins as non statans, I'm sorry,
two other medications that are not statins, and I'm finally
(17:13):
in what we like to call I'm in a good LDL.
I'm in my LDL safe zone. 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 3 (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 I educate others.
I encourage people to find out about their numbers and
to do something about their numbers if they are elevated.
(18:12):
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.
I help to build trust and help people find additional
resources and information. I share my story with others who
(18:35):
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
will be a meeting held in National Hardware in a
couple of weeks, so I'm looking forward to sharing my
(18:59):
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 3 (19:18):
You're very welcome. Dennis, thank you all.
Speaker 1 (19:20):
Right, 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?
(19:41):
Can you kind of share how that maybe works?
Speaker 2 (19:43):
Sure so, Pete. 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.
I'd love to be a part of the solution. How
could I do that? And then we'll connect them with
a live person who can talk with them about how
(20:05):
they might fit in. We do train 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
(20:27):
also we all need to remember that 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
(20:49):
make the case for why we need to 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 2 (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 litlea 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 litle a. And the fact that high LP
(22:01):
littlea 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 little a. Because if you're of
African descent, one in three people would have high LP lita.
(22:23):
If you're a female, you're more likely to have even
higher levels of LP lit a. 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
(22:43):
are two higher 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
(23:04):
think it's really critical that people become part of their
medical care team, 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 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 2 (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 larger 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.
How do they all do that well?
Speaker 2 (24:08):
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. They
can call the office. We really work with a lot
of sponsors, as you said, to put on awareness events,
(24:30):
to offer free screening in their community or even for
their employees. 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, no nothing.
It was awful. So when somebody gets today, it's a
lot different. The same with way 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 2 (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.
We really need everyone. Everyone should be screened for high
(25:47):
lp litoa, regardless of whether you 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 these numbers. If your lp
(26:11):
lit a is higher, if it is one hundred and
twenty five animals per liter or higher, then then you're
at high risk. And the interesting thing about lp lita
is that it's ninety percent genetically driven, So it's a
very simple equation. If it's high, you have a mutation,
you're at risk, and then therapies will be coming out
(26:33):
that currently show Dennis the ability to lower LP litoa.
The current 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
(26:53):
see in the clinical trials that will mean protecting people
from cardiovasco disease.
Speaker 1 (26:57):
Well, that's pretty extraordinary. And speaking of medicine, 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 you know what's lifestyle like
for you? Right now?
Speaker 2 (27:17):
I'm happy to you know. 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
(27:38):
smoke under any condition, under 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
(28:01):
not its indication, but it also does lower LP littlea
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 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 2 (28:45):
Thank you so much. Dennis. If someone would like to
learn more about LP LITLEA 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 it's really a
story of hope. 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
(29:27):
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 family heart foundations. So
you're doing terrific work with your team. I want to
stay in touch with you, but thank you so much
(29:51):
for 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 DC.
I'm your host NS 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
(00:28):
and 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 aug 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.
Speaker 3 (01:31):
You know.
Speaker 2 (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. And when
the paramedics arrived, they really, honestly Dennis said to me,
(01:54):
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. And in fact I was having a heart attack.
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
(02:17):
LDL cholesterol from birth and the other one high LP
little A, which is also a genetic condition, and it's
very similar to cholesterol and causes premature cardiovascular disease. When
I finally met a specialist two years later and received
the diagnosis and understood what I was facing, I also
(02:43):
learned how many people had similar challenges becoming diagnosed. At
the time, it was estimated that about five percent of
people with these genetic dyslipidemias had ever been diagnosed. So
I decided that this was my life calling and the
(03:05):
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, and probably many
(03:26):
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 in 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 2 (04:21):
Sure, So, high lp lito A 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 it causes inflammation, and so there are therapies that
(05:05):
you 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 prevented
of what's the easy thing you can do when you
(05:43):
go to your doctor to get screen and say, hey, listen,
I need to check this out.
Speaker 2 (05:49):
So the challenge with high O P LITTLEA is that
it is not part of the common lipid panel or
cholesterol screening that most doctors do, so even though we've
known about it for 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
(06:13):
screen your high LP LITLEA 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 LITA,
it is screened 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,
(06:36):
they can order a simple kit that'll come to their
house where they can do a fingerprick and it will
screen for.
Speaker 4 (06:43):
LP littera as well as LDL levels, and that is
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.
Speaker 2 (06:55):
Or through a program like hours. Because it's also really
important to realize is that the medical community isn't highly
educated currently about high LP littlea. 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
(07:16):
to treat it directly, so we're not going to 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,
(07:38):
you can do other things to reduce your risk and
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 2 (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. I said, you know,
this is it, this is 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
(09:01):
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 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
(09:23):
are not aligned. And I know you know this. 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
(09:44):
it's about thirty percent. So it's still not a 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 illness and suffering, is to prevent it. And what
is so exciting about a genetic condition like highop LITTLEA
(10:09):
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 I may say, there
are clinical trials that are in late stages for therapies
(10:33):
for LP LITLEA. They're 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 have everyone who is impacted
(10:54):
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 2 (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 face 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.
Speaker 2 (12:11):
Good morning, Gail, 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 3 (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 approtein 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
(12:50):
her doctor. My cousin told as many relatives 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
(13:10):
father died of a fatal heart attack at the age
of fifty eight, and that was seven years before 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
(13:33):
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 3 (13:53):
Well? I would say 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 the.
Speaker 5 (14:10):
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 3 (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 do it just gave
(15:36):
me just the opportunity to have a sense of community
with people who really understood. 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 do 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 3 (16:05):
I would say day today, medication management has been quite
a journey for me personally. 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 happened to be the type of patient that
(16:27):
is statin intolerant. So that's what made my journey a
little trickier. And fortunately, because 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
(16:48):
are medications called PCSK nine inhibitors. There are medications that
are available now that are not statins, and so I'm
on a combination of the PCSK nine I that I
mentioned and two other statins as non statans, I'm sorry,
two other medications that are not statins, and I'm finally
(17:13):
in what we like to call I'm in a good LDL.
I'm in my LDL safe zone. 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 3 (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 I educate others.
I encourage people to find out about their numbers and
to do something about their numbers if they are elevated.
(18:12):
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.
I help to build trust and help people find additional
resources and information. I share my story with others who
(18:35):
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
will be a meeting held in National Hardware in a
couple of weeks, so I'm looking forward to sharing my
(18:59):
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 3 (19:18):
You're very welcome. Dennis, thank you all.
Speaker 1 (19:20):
Right, 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?
(19:41):
Can you kind of share how that maybe works?
Speaker 2 (19:43):
Sure so, Pete. 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.
I'd love to be a part of the solution. How
could I do that? And then we'll connect them with
a live person who can talk with them about how
(20:05):
they might fit in. We do train 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
(20:27):
also we all need to remember that 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
(20:49):
make the case for why we need to 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 2 (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 litlea 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 litle a. And the fact that high LP
(22:01):
littlea 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 little a. Because if you're of
African descent, one in three people would have high LP lita.
(22:23):
If you're a female, you're more likely to have even
higher levels of LP lit a. 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
(22:43):
are two higher 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
(23:04):
think it's really critical that people become part of their
medical care team, 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 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 2 (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 larger 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.
How do they all do that well?
Speaker 2 (24:08):
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. They
can call the office. We really work with a lot
of sponsors, as you said, to put on awareness events,
(24:30):
to offer free screening in their community or even for
their employees. 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, no nothing.
It was awful. So when somebody gets today, it's a
lot different. The same with way 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 2 (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.
We really need everyone. Everyone should be screened for high
(25:47):
lp litoa, regardless of whether you 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 these numbers. If your lp
(26:11):
lit a is higher, if it is one hundred and
twenty five animals per liter or higher, then then you're
at high risk. And the interesting thing about lp lita
is that it's ninety percent genetically driven, So it's a
very simple equation. If it's high, you have a mutation,
you're at risk, and then therapies will be coming out
(26:33):
that currently show Dennis the ability to lower LP litoa.
The current 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
(26:53):
see in the clinical trials that will mean protecting people
from cardiovasco disease.
Speaker 1 (26:57):
Well, that's pretty extraordinary. And speaking of medicine, 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 you know what's lifestyle like
for you? Right now?
Speaker 2 (27:17):
I'm happy to you know. 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
(27:38):
smoke under any condition, under 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
(28:01):
not its indication, but it also does lower LP littlea
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 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 2 (28:45):
Thank you so much. Dennis. If someone would like to
learn more about LP LITLEA 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 it's really a
story of hope. 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
(29:27):
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 family heart foundations. So
you're doing terrific work with your team. I want to
stay in touch with you, but thank you so much
(29:51):
for your time and We really appreciate you joining us
on community DC.
Speaker 2 (29:54):
Thank you.
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