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Community DC Katherine Wilemon Family Heart Foundation · Community D.C.

• 0:04
  Speaker 1: Good morning, and welcome to another edition of Community d C.
• 0:07
  Speaker 1: I'm your HOSTNS Glasgow. This morning, we welcome to the
• 0:10
  Speaker 1: program for the first time. Catherine Wilma's the founder and
• 0:13
  Speaker 1: CEO for the Family Heart Foundation, which works to say
• 0:16
  Speaker 1: families from heart disease by increasing early diagnosis and improving
• 0:19
  Speaker 1: care for FH and also elevated lipoprotein A also known
• 0:24
  Speaker 1: as LP LITTLEA. It accomplishes this through research, education and
• 0:28
  Speaker 1: patient advocation. We'll also speak with one of the Foundation's ambassadors,
• 0:32
  Speaker 1: Gail Titus, and her personal story as well. Here's my
• 0:35
  Speaker 1: conversation with Catherine and Gail. I hope you find it
• 0:38
  Speaker 1: educational and enjoy it as much as I did.
• 0:40
  Speaker 2: Good morning, Catherine, Hi Dennis, nice to see you.
• 0:43
  Speaker 1: It's nice to see you and have you on Community
• 0:45
  Speaker 1: DC for the first time ever. And since I've found
• 0:48
  Speaker 1: out about our conversation, I've learned a lot about Family
• 0:51
  Speaker 1: Heart Foundation. And I'm always an aged Catherine because I
• 0:54
  Speaker 1: talked to so many different nonprofits out there and people
• 0:57
  Speaker 1: that have things happen to them and when they do,
• 1:02
  Speaker 1: they handle it, but then they decided to take it
• 1:04
  Speaker 1: up to another level and come up with their own
• 1:06
  Speaker 1: foundation like you did, which is really incredible. So I
• 1:09
  Speaker 1: set the table a little bit, probably didn't do a
• 1:11
  Speaker 1: good justice in our open about Family Heart Foundation. I'd
• 1:15
  Speaker 1: love to hear your story because it really is truly
• 1:18
  Speaker 1: extraordinary what happened to you when you were thirty nine
• 1:20
  Speaker 1: years of age and all hell broke loose. I know
• 1:23
  Speaker 1: a lot's happened since then, but please share your journey
• 1:26
  Speaker 1: and your story with our listeners if you could.
• 1:28
  Speaker 2: Absolutely so you know.
• 1:32
  Speaker 3: I was out gardening one day my husband and I
• 1:34
  Speaker 3: lived in the Hollywood Hills, and I developed crushing chest
• 1:39
  Speaker 3: pain and I called nine to one one because I
• 1:43
  Speaker 3: had always had high cholesterol, so I was worried instantly
• 1:47
  Speaker 3: that I might be having a heart attack.
• 1:49
  Speaker 2: And when the paramedics.
• 1:50
  Speaker 3: Arrived, they really, honestly Dennis said to me, there's no
• 1:54
  Speaker 3: way you're having a heart attack. Maybe if it's your husband,
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  Speaker 3: because imagine I'm a thirty nine year old woman.
• 1:59
  Speaker 2: And in fact I was having a heart attack.
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  Speaker 3: And it took me two subsequent years after that event
• 2:08
  Speaker 3: to learn that the reason why was because I have
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  Speaker 3: two genetic conditions, one called familial hypercholesterolemia that causes high
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  Speaker 3: LDL cholesterol from birth, and the other one high LP
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  Speaker 3: little A, which is also a genetic condition and it's
• 2:25
  Speaker 3: very similar to cholesterol and causes premature cardiovascular disease.
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  Speaker 2: When I finally met.
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  Speaker 3: A specialist two years later and received the diagnosis and
• 2:39
  Speaker 3: understood what I was facing, I also learned how many
• 2:44
  Speaker 3: people had similar challenges becoming diagnosed. At the time, it
• 2:51
  Speaker 3: was estimated that about five percent of people with these
• 2:55
  Speaker 3: genetic dyslipidemias had ever been diagnosed.
• 3:00
  Speaker 2: So I decided that this was my life.
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  Speaker 3: Calling and the opportunity to help millions of people across
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  Speaker 3: the United States get a diagnosis, understand their condition, understand
• 3:16
  Speaker 3: that it's a family condition, that their family needs to
• 3:19
  Speaker 3: be screened, and be empowered. I know you know this,
• 3:25
  Speaker 3: and probably many of your listeners know this. Heart disease
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  Speaker 3: continues to be the single biggest threat or the number
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  Speaker 3: one cause of death and illness in the United States,
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  Speaker 3: So it's really very serious for people to understand whether
• 3:43
  Speaker 3: they are born at risk for it.
• 3:46
  Speaker 1: Well, what I'd like to do is we will get
• 3:48
  Speaker 1: into the weeds a little bit, and I do want
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  Speaker 1: to find out about your mission and your vision when
• 3:52
  Speaker 1: it comes to Family Heart Foundation. But I think we
• 3:54
  Speaker 1: should do this first and educationally, because I know there's
• 3:57
  Speaker 1: a number a le of different things that can happen
• 3:59
  Speaker 1: to people, and a few have happened to you. I'd
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  Speaker 1: like you to talk a little bit more about the
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  Speaker 1: genetic part of it and how people can get it,
• 4:06
  Speaker 1: and also when it comes to treatment and diagnosing and
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  Speaker 1: all that specifically to your journey, so you can kind
• 4:13
  Speaker 1: of help our listeners kind of go through what it
• 4:15
  Speaker 1: took for you to do and what you take now
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  Speaker 1: on how your lifestyle is. Could you kind of share
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  Speaker 1: that with us as well?
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  Speaker 3: Sure, so, high lp LITOA is genetic, and about one
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  Speaker 3: in five people in the United States are estimated to
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  Speaker 3: have high lp LITOA. But what we know is that
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  Speaker 3: less than five percent have ever been screened for it.
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  Speaker 3: And you inherit it from one of your parents, or
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  Speaker 3: you could inherit it from both your parents because it's
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  Speaker 3: so common and it causes cardiovascular disease to begin very
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  Speaker 3: early in life. It causes clotting, it causes plaque formation,
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  Speaker 3: and causes inflammation, and so there are therapies that you
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  Speaker 3: can take to reduce your risk. And really what's key though,
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  Speaker 3: is time. The sooner that you know whether you're at risk.
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  Speaker 3: The sooner you can go on therapies that are very
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  Speaker 3: easy to take and can protect you, and the sooner
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  Speaker 3: you can have your family members screened.
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  Speaker 1: So when it comes to treatments and medications, that's and
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  Speaker 1: we'll talk about that a little bit more, but when
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  Speaker 1: it comes to screening, and it's a little staggering that
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  Speaker 1: one in five people will have this and I didn't
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  Speaker 1: know that, so I'm learning as we go here too,
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  Speaker 1: and that's kind of a staggering number and a little
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  Speaker 1: scary for everybody. It's probably listening, but to be preventedi
• 5:41
  Speaker 1: of what's the easy thing you can do when you
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  Speaker 1: go to your doctor to get screened and say, hey, listen,
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  Speaker 1: I need to check this out.
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  Speaker 3: So the challenge with high O p LITOA is that
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  Speaker 3: it is not part of the common lipid panel or
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  Speaker 3: cholesterol screening that most doctors.
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  Speaker 2: Do, so even though we've known about it for.
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  Speaker 3: About sixty years, it hasn't been integrated into regular screening.
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  Speaker 3: So one thing you can do is you can ask
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  Speaker 3: your physician or nurse practitioner to screen your high LP
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  Speaker 3: LITA if they say, well, we've already screened your cholesterol
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  Speaker 3: that's not the same and you need to get an
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  Speaker 3: explicit different test for high olp litoa. It is screened
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  Speaker 3: through a simple blood test and you don't have to
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  Speaker 3: be fasting. The other option is, for example, one of
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  Speaker 3: the things that we offer is a program called cholesterolconnect
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  Speaker 3: dot org so that people can go online, they can
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  Speaker 3: order a simple kit that'll come to their house where
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  Speaker 3: they can do a fingerprick and it will screen for
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  Speaker 3: lp lita as well as LDL levels, and that is
• 6:47
  Speaker 3: all free of charge, and then we help people to
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  Speaker 3: understand what their levels mean, whether they got their level
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  Speaker 3: screened at their physician's office or through a program like hours.
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  Speaker 2: Because it's also.
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  Speaker 3: Really important to realize is that the medical community isn't
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  Speaker 3: highly educated currently about high lp littoa. So if a
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  Speaker 3: physician says to you, you know, there's nothing we can
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  Speaker 3: do about that right now. There are no therapies directly
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  Speaker 3: to treat it, which is true today. There are no
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  Speaker 3: therapies to treat it directly, so we're not going to
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  Speaker 3: screen for it. That part does not make sense because
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  Speaker 3: in Europe they are recommending that every person be screened,
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  Speaker 3: and there are now some guidelines in the United states
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  Speaker 3: that also recommend that every person be screened, and there
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  Speaker 3: are things you can do. You can lower your LDL cholesterol,
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  Speaker 3: you can do other things to reduce your risk and
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  Speaker 3: tell there are therapies.
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  Speaker 1: So I want to talk about the origin story of
• 7:46
  Speaker 1: Family Heart Foundation. And when I've talked to wonderful people
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  Speaker 1: like you that have had something happen and then they've
• 7:50
  Speaker 1: started a nonprofit or foundation, usually one of two things
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  Speaker 1: come up, the other one to help a lot of people,
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  Speaker 1: and or they found out how appalling it is that
• 8:01
  Speaker 1: what they have has not been instituted educationally correctly, or
• 8:05
  Speaker 1: the medical system is not handling it correctly, and there's
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  Speaker 1: just a big giant hole in the industry. When you
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  Speaker 1: decided to after what had happened to you, how long
• 8:13
  Speaker 1: did it take to think about starting the foundation and
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  Speaker 1: why did you start it?
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  Speaker 3: So I started the foundation about four years after my event,
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  Speaker 3: and it was for all of the reasons that you named, Dennis.
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  Speaker 3: I mean, for one, I had always wanted to help
• 8:32
  Speaker 3: people and always wanted to make a difference. And I
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  Speaker 3: can remember saying to my husband when I discovered the
• 8:39
  Speaker 3: how systematic some of the problems were in terms of diagnosis,
• 8:43
  Speaker 3: and care for these genetic dyslipidemias.
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  Speaker 2: I said, you know, this is it, this is.
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  Speaker 3: My calling, and I feel really honored to have the
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  Speaker 3: opportunity to help as many people as we have been
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  Speaker 3: able to help through the Family Heart Foundation over the
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  Speaker 3: last fourteen years. And I think that we just we
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  Speaker 3: have to remember that there is so science is progressing
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  Speaker 3: so quickly in medicine right now that it is challenging
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  Speaker 3: for clinicians to keep up with all the new information.
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  Speaker 3: And unfortunately, the healthcare system in the United States is
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  Speaker 3: very fragmented and the incentives.
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  Speaker 2: Are not aligned. And I know you know this.
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  Speaker 3: I mean, payers are not incentivized to prioritize prevention. And
• 9:32
  Speaker 3: we've become very good at helping people if they have
• 9:35
  Speaker 3: a cardiovascular disease event hopefully survive. It used to be
• 9:40
  Speaker 3: that fifty percent of people died from their first heart attack.
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  Speaker 3: Now it's about thirty percent. So it's still not a
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  Speaker 3: risk you want to take. And there have been improvements
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  Speaker 3: and that's really incredible. But really the opportunity with cardiovascular
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  Speaker 3: disease as the number one killer in the United States
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  Speaker 3: and cause it illness and suffering, is to prevent it.
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  Speaker 2: And what is so exciting about a genetic.
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  Speaker 3: Condition like HIGHOLP litoa is that we can find out
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  Speaker 3: before disease begins, or in the early stages of disease
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  Speaker 3: who's at risk, and there are things we can do
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  Speaker 3: today that can help them to slow down that risk
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  Speaker 3: or to completely eradicate it in some cases. And if
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  Speaker 3: I may say, there are clinical trials that are in
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  Speaker 3: late stages for therapies for LP LITLEA, there are multiple
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  Speaker 3: trials and so in the next couple of years we
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  Speaker 3: will have therapies to treat this directly. But change doesn't
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  Speaker 3: happen quickly if ninety five percent of people have never
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  Speaker 3: been screened. Think of the work ahead of us to
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  Speaker 3: have everyone who is impacted understanding that they have this risk,
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  Speaker 3: so that when the therapies are available, they can take them.
• 11:01
  Speaker 1: There is a lot I want to talk about on
• 11:03
  Speaker 1: the other side, but I want to give you an
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  Speaker 1: opportunity just to introduce our next guest, Gail Titus, who's
• 11:09
  Speaker 1: a patient ambassador when it comes to Family Heart Foundation.
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  Speaker 1: Just a little bit about Gail, who was going to
• 11:15
  Speaker 1: share her story with us, but how you two got
• 11:17
  Speaker 1: connected in her being a part of the foundation.
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  Speaker 3: So It's been terrific to know Gail now for quite
• 11:25
  Speaker 3: some few years, maybe like five years. And she came
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  Speaker 3: to us after she had had a stroke, which is
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  Speaker 3: terribly scary and is a form of cardiovascular disease and
• 11:39
  Speaker 3: was referred to us through a specialist, and we have
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  Speaker 3: been on this journey with her to better understand why
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  Speaker 3: she would have a stroke, the cardiovascular disease that ran
• 11:50
  Speaker 3: in her family, and to see her time and time
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  Speaker 3: again be willing to step up as a community member,
• 11:57
  Speaker 3: to help others, to be on our private facebok book
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  Speaker 3: page and moderate it, or to advocate on Capitol Hill.
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  Speaker 3: So it's really been an honor to work with Gail
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  Speaker 3: as a Family Heart ambassador.
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  Speaker 1: I'm standing. Here's my conversation with Gail right now. Good morning, Gail.
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  Speaker 2: Good morning Dennis.
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  Speaker 1: Well, it's a pleasure to have you on Community DC.
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  Speaker 1: And we've just been talking to Catherine about her story
• 12:18
  Speaker 1: and of course everything that comes to Family Heart Foundation,
• 12:20
  Speaker 1: and we're going to get back to him just a moment.
• 12:22
  Speaker 1: But I know that the Family Heart Foundation is really
• 12:24
  Speaker 1: big in your life, and you've got your own story,
• 12:27
  Speaker 1: so I was hoping you could share with our listeners.
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  Speaker 4: I would be happy to Dennis Well. The topic is
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  Speaker 4: LP little A and I do live every day with
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  Speaker 4: high elevated life of protein A. At the age of
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  Speaker 4: thirty seven, a paternal cousin was told by a cardiologist
• 12:45
  Speaker 4: that she had high lived the protein A at the
• 12:49
  Speaker 4: recommendation of her doctor. My cousin told as many relatives
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  Speaker 4: as possible, including me, because high LP little A is
• 12:58
  Speaker 4: genetic and runs in families. I got screened and that's
• 13:03
  Speaker 4: when I found out that I had high LP LITTLEA. Unfortunately,
• 13:10
  Speaker 4: my father died of a fatal heart attack at the
• 13:13
  Speaker 4: age of fifty eight, and that was seven years before
• 13:19
  Speaker 4: I learned that I had elevated like a protein A.
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  Speaker 4: My father did not know that he had LP LITTLEA.
• 13:29
  Speaker 4: And of course LP LILA is a major risk factor
• 13:33
  Speaker 4: of cardiovascular disease.
• 13:36
  Speaker 1: So Gale, one of the things that we find out
• 13:38
  Speaker 1: in this series is we talked to different nonprofits, especially
• 13:41
  Speaker 1: that have to do with diseases that you know, knowledge
• 13:43
  Speaker 1: is power. And with that said, when you found out
• 13:46
  Speaker 1: and you started to do your own research and talk
• 13:48
  Speaker 1: to doctors, what were next steps for you? What did
• 13:51
  Speaker 1: you learn and what did you have to do?
• 13:53
  Speaker 2: Well, I would say.
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  Speaker 4: My next steps were to reach out to a specialist.
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  Speaker 4: I did very purpose fully reach out to a lipidologist.
• 14:02
  Speaker 4: And again the cousin that told me about her story
• 14:08
  Speaker 4: with elevated like a protein a had reached out to.
• 14:10
  Speaker 5: The University of Pennsylvania, and so I really followed her
• 14:13
  Speaker 5: lead on that and did visit the preventive cardiology team,
• 14:21
  Speaker 5: and the stars really aligned for me because when I
• 14:24
  Speaker 5: did visit the University of Pennsylvania, as it turns out,
• 14:28
  Speaker 5: there was a medical.
• 14:29
  Speaker 4: Student that was working along with the Family Heart Foundation,
• 14:34
  Speaker 4: and that student just happened to be there the day
• 14:38
  Speaker 4: that I was at the preventive cardiology visit, and the
• 14:46
  Speaker 4: medical student asked if I had heard about the Family
• 14:49
  Speaker 4: Heart Foundation, which at the time I had not, and
• 14:52
  Speaker 4: the student gave me the website, and from there, when
• 14:58
  Speaker 4: I got home, I logged on to the website and
• 15:01
  Speaker 4: I read about the various educational offerings that the Family
• 15:05
  Speaker 4: Heart Organization has, and I also found out about a
• 15:11
  Speaker 4: global summit that is held annually and I attended the
• 15:15
  Speaker 4: summit and that is where I met Family Heart Ambassadors,
• 15:20
  Speaker 4: and I I met various members of the medical community,
• 15:24
  Speaker 4: scientific community, and I really began to learn more about
• 15:31
  Speaker 4: elevated lipoprotein A and then also too, it just gave
• 15:36
  Speaker 4: me just the opportunity to have a sense of community
• 15:39
  Speaker 4: with people who really understood.
• 15:42
  Speaker 3: Yeah.
• 15:43
  Speaker 1: We always talk in this series too about when you
• 15:45
  Speaker 1: have something, you always feel like you're on an island
• 15:47
  Speaker 1: by yourself and I'm the only person that has this.
• 15:50
  Speaker 1: But when you have a chance to relate with other
• 15:52
  Speaker 1: human beings on the planet that have what you have,
• 15:55
  Speaker 1: it kind of settles you down that I'm not in
• 15:57
  Speaker 1: this fight by myself. What's day to day life with
• 16:00
  Speaker 1: you now when it comes to medications and also managing it,
• 16:03
  Speaker 1: And then I want to talk to you about being
• 16:04
  Speaker 1: a patient ambassador.
• 16:05
  Speaker 4: I would say day today, medication management has been quite
• 16:10
  Speaker 4: a journey.
• 16:11
  Speaker 2: For me personally.
• 16:13
  Speaker 4: And I say that because, as you may have heard
• 16:16
  Speaker 4: that the term statin is very very common when cholesterol
• 16:22
  Speaker 4: has to be treated, and I just happen to be
• 16:26
  Speaker 4: the type of patient that is statin intolerant. So that's
• 16:30
  Speaker 4: what made my journey a little trickier. And fortunately, because
• 16:37
  Speaker 4: there are just so many medicinal therapies that are now available,
• 16:42
  Speaker 4: I'm in much better shape than I was a few
• 16:45
  Speaker 4: years ago. Because there are medications called PCSK nine inhibitors.
• 16:53
  Speaker 4: There are medications that are available now that are not statins,
• 16:58
  Speaker 4: and so I'm on a combination of the PCSK nine
• 17:03
  Speaker 4: I that I mentioned and two other statins as non statins,
• 17:07
  Speaker 4: I'm sorry, two other medications that are not statins, and
• 17:11
  Speaker 4: I'm finally in what we like to call I'm in
• 17:15
  Speaker 4: a good LDL.
• 17:17
  Speaker 2: I'm in my LDL safe zone.
• 17:18
  Speaker 4: That's the term that I was looking for, and that's
• 17:22
  Speaker 4: really the place where one likes to be, especially when
• 17:26
  Speaker 4: you have a diagnosis of high like a protein A.
• 17:29
  Speaker 4: It's very important to be in that LDL safe zone.
• 17:32
  Speaker 1: Well, very good, Well, listen, I wanted to finish out
• 17:34
  Speaker 1: with being a patient ambassador, and one of the things
• 17:37
  Speaker 1: that I always find cool is that when life throws
• 17:39
  Speaker 1: you a curveball, some people decide to not only deal
• 17:41
  Speaker 1: with that, but step up and then pay it forward,
• 17:43
  Speaker 1: which is what you're doing as a patient ambassador when
• 17:46
  Speaker 1: it comes to Family Heart Foundation. Can you tell us
• 17:48
  Speaker 1: how this relationship works for you.
• 17:50
  Speaker 4: Well, I'm very pleased to say that I did attend
• 17:53
  Speaker 4: Family Heart Ambassador training in Washington, DC in twenty twenty
• 18:00
  Speaker 4: and as a Family Heart Foundation ambassador.
• 18:03
  Speaker 2: I educate others.
• 18:04
  Speaker 4: I encourage people to find out about their numbers and
• 18:08
  Speaker 4: to do something about their numbers if they are elevated.
• 18:12
  Speaker 4: There is really so much misinformation about elevated like a
• 18:18
  Speaker 4: protein A and so I do help to moderate a
• 18:21
  Speaker 4: Facebook page so that people can get credible information about it.
• 18:26
  Speaker 4: I help to build trust and help people find additional
• 18:30
  Speaker 4: resources and information. I share my story with others who
• 18:35
  Speaker 4: may be going through the same journey. I share my
• 18:38
  Speaker 4: story at scientific meetings and other settings such as the
• 18:42
  Speaker 4: Academy of Managed Care Pharmacy and as a matter of fact,
• 18:46
  Speaker 4: Academy of Managed Care Pharmacy the acronym is ACMP. There
• 18:51
  Speaker 4: will be a meeting held in National Hardware in a
• 18:54
  Speaker 4: couple of weeks, so I'm looking forward to sharing my
• 18:59
  Speaker 4: story there because it's very important that advocacy be done
• 19:04
  Speaker 4: for those members of the community who pay for care. Yeah.
• 19:10
  Speaker 1: Yeah, I couldn't agree more. Gail, it's so nice that
• 19:13
  Speaker 1: you could spend some time with us in sharing your story.
• 19:15
  Speaker 1: Thank you so much for joining us on Community DC.
• 19:17
  Speaker 1: We really appreciate it.
• 19:18
  Speaker 2: You're very welcome.
• 19:18
  Speaker 4: Dennis, thank you all right.
• 19:20
  Speaker 1: Catherine. We had a great talk with Gail, and she's
• 19:22
  Speaker 1: got an unbelievable story, and I imagine you've got handfuls of
• 19:25
  Speaker 1: stories like that. I love it. You know when something
• 19:27
  Speaker 1: really just terrible happens to people, but they decide to
• 19:31
  Speaker 1: join in and pay it forward. And I think Gail
• 19:33
  Speaker 1: is one of those handfuls of people that is doing
• 19:35
  Speaker 1: that as an ambassador. If somebody wants to be a
• 19:38
  Speaker 1: patient ambassador, is there kind of a process? Can you
• 19:42
  Speaker 1: kind of share how that maybe works?
• 19:43
  Speaker 2: Sure so, Pete.
• 19:45
  Speaker 3: On our website familyheart dot org, people can go and
• 19:49
  Speaker 3: there's an application that if they can fill out if
• 19:51
  Speaker 3: that's their preference, or they can call the main office
• 19:54
  Speaker 3: and say, you know, here's my story.
• 19:57
  Speaker 2: I'd love to be a part of the solution. How
• 19:59
  Speaker 2: could I do that?
• 20:00
  Speaker 3: And then we'll connect them with a live person who
• 20:03
  Speaker 3: can talk with them about how they might fit in.
• 20:06
  Speaker 2: We do train.
• 20:07
  Speaker 3: People who step up as an ambassador in the science
• 20:12
  Speaker 3: and in some of the problems and solutions that we
• 20:15
  Speaker 3: are working on, and then we often provide opportunities for
• 20:19
  Speaker 3: them to tell their stories to different stakeholders because what
• 20:23
  Speaker 3: we see is, you know, you need data, you need
• 20:26
  Speaker 3: the science, but also we all need to remember that
• 20:29
  Speaker 3: these data points, this science, it all tracks back to
• 20:34
  Speaker 3: a human or a family of people. And I think
• 20:38
  Speaker 3: that's been one of the strategies that I'm very proud
• 20:41
  Speaker 3: of as an organization is as a research and advocacy organization,
• 20:45
  Speaker 3: we've been able to serve people and we've been able
• 20:48
  Speaker 3: to really make the case for why we need to
• 20:53
  Speaker 3: do better as a society in preventing cardiovascular disease.
• 20:57
  Speaker 1: Well, that's a good segue for talking about advocation mentioned
• 21:00
  Speaker 1: in a couple of times. That's something that we had
• 21:02
  Speaker 1: also brought up to Gale two. When it comes to
• 21:04
  Speaker 1: knowledge is power, and that's exactly what you're doing. So
• 21:07
  Speaker 1: beside getting the word out there to just about everybody
• 21:10
  Speaker 1: when you go to either Capitol Hill, when you're trying
• 21:12
  Speaker 1: to get the message out to all the people out
• 21:14
  Speaker 1: there that may or may not be affected by this,
• 21:16
  Speaker 1: what does that look like right now?
• 21:17
  Speaker 3: So we do a lot of publishing for scientists and clinicians,
• 21:22
  Speaker 3: and then we take those publications and we translate them
• 21:26
  Speaker 3: into lay persons language so that we can share them
• 21:30
  Speaker 3: with business people like those who run healthcare systems or payers,
• 21:37
  Speaker 3: but also so that we can share them with the
• 21:40
  Speaker 3: general public to say, you know what's exciting about these
• 21:44
  Speaker 3: genetic dyslipidemias like LP littlea, is that we're going to
• 21:49
  Speaker 3: have solutions for them. We have solutions for genetic high cholesterol,
• 21:54
  Speaker 3: and very soon we're going to have solutions for genetic
• 21:57
  Speaker 3: high LP litlea. And the fact that high LP litlea
• 22:02
  Speaker 3: is so common. Again, one in five people in the
• 22:05
  Speaker 3: general population would have it, but then you have someone
• 22:08
  Speaker 3: like Gail who is of African descent and is a female,
• 22:13
  Speaker 3: and that means that she is likely to have the
• 22:16
  Speaker 3: highest LP litlea. Because if you're of African descent, one
• 22:20
  Speaker 3: in three people would have high LP litlea. If you're
• 22:23
  Speaker 3: a female, you're more likely to have even higher levels
• 22:26
  Speaker 3: of LP litlea. So we're able to as an organization
• 22:31
  Speaker 3: go out also into those communities that are of the
• 22:35
  Speaker 3: highest risk. So we're going out to communities of people
• 22:39
  Speaker 3: where there are more people who are Black or more
• 22:41
  Speaker 3: people who are South Asian because those are two higher
• 22:44
  Speaker 3: risk populations where it's closer to one in three. So
• 22:49
  Speaker 3: really going to decision makers, but also grassroots. You know,
• 22:53
  Speaker 3: it's important that we empower, as you said, the people,
• 22:56
  Speaker 3: because it's individual people who have to advocate for themselves
• 23:00
  Speaker 3: on a daily basis. And also, Dennis, I think it's
• 23:04
  Speaker 3: really critical that people become part of their medical care team,
• 23:09
  Speaker 3: that they understand their condition and the medication they're supposed
• 23:13
  Speaker 3: to take, because they have to make the decision to
• 23:17
  Speaker 3: take that and participate in their care.
• 23:19
  Speaker 4: Right.
• 23:19
  Speaker 1: And you know, Catherine, I want to go back to
• 23:21
  Speaker 1: what you first talked about when it came to blood screening.
• 23:23
  Speaker 1: It really caught my attention. I bet it did for
• 23:25
  Speaker 1: our listeners too. That the normal blood screening that we
• 23:28
  Speaker 1: give at our general practitioner doesn't cover what you've been
• 23:32
  Speaker 1: talking about, So you've got to advocate for yourself too, right.
• 23:35
  Speaker 3: That's absolutely true. Normal lipid screening for high cholesterol and
• 23:41
  Speaker 3: triglycerides does not include LP little a screening, so you
• 23:47
  Speaker 3: have to ask specifically for it.
• 23:49
  Speaker 1: Let's talk about funding, because I know you've got to donate.
• 23:51
  Speaker 1: Button we want to talk about and whether it's a
• 23:53
  Speaker 1: one time gift or a regular one monthly. And also
• 23:56
  Speaker 1: we have a lot of listeners that own small, medium
• 23:58
  Speaker 1: and large businesses. If anybody wants to be a part
• 24:01
  Speaker 1: of the organization, either donate one time, maybe put on
• 24:04
  Speaker 1: an event with you or any kind of large donation.
• 24:07
  Speaker 3: How do they all do that well, We would be
• 24:09
  Speaker 3: thrilled to have more people leaning in on this cause.
• 24:13
  Speaker 3: They can go to Familyheart dot org and they can
• 24:18
  Speaker 3: write us at Contactfamilyheart dot org.
• 24:22
  Speaker 2: They can call the office. We really work with a
• 24:24
  Speaker 2: lot of.
• 24:26
  Speaker 3: Sponsors, as you said, to put on awareness events, to
• 24:30
  Speaker 3: offer free screening in their community or even.
• 24:33
  Speaker 2: For their employees.
• 24:34
  Speaker 3: And we really welcome the resources because there are so
• 24:37
  Speaker 3: many people who yet are yet to be diagnosed and
• 24:41
  Speaker 3: understand how to help themselves and their families.
• 24:44
  Speaker 1: One of the things that I've talked to my listeners
• 24:46
  Speaker 1: about on Community DC and they know my story because
• 24:49
  Speaker 1: I've had rumatorialthritis since I was twenty one. Now, I
• 24:51
  Speaker 1: got that back in eighty seven, as you can imagine,
• 24:53
  Speaker 1: with no Internet, no social media, no education, know nothing.
• 24:57
  Speaker 1: It was awful. So when somebody gets today, it's a
• 25:01
  Speaker 1: lot different. The same with what you have in some
• 25:03
  Speaker 1: of the other people in Gale And everything's changing now
• 25:05
  Speaker 1: because we have the Internet, we have incredible doctors out
• 25:09
  Speaker 1: there in treatments. With all that said, I did read
• 25:11
  Speaker 1: a little bit more on your bio about the clinical
• 25:14
  Speaker 1: trials in the next five to ten years are going
• 25:16
  Speaker 1: to be paramount as you talk to researchers and doctors
• 25:19
  Speaker 1: and all the things that you've learned, Catherine about what
• 25:21
  Speaker 1: you're doing today with your team, what does the future
• 25:24
  Speaker 1: look like in the next five to ten years.
• 25:26
  Speaker 3: So the future for cardiovascular disease prevention looks incredibly bright
• 25:31
  Speaker 3: if we prioritize it. The key, the biggest barrier that
• 25:36
  Speaker 3: stands between someone's health and an early disease today is diagnosis.
• 25:43
  Speaker 2: We really need everyone.
• 25:45
  Speaker 3: Everyone should be screened for high LP litoay, regardless of
• 25:49
  Speaker 3: whether we have a family history or not, and regardless
• 25:52
  Speaker 3: of whether or not you are from one of these
• 25:55
  Speaker 3: higher risk groups like people of African descent or South Asian,
• 25:58
  Speaker 3: because it affects all all races and ethnicities. But I
• 26:02
  Speaker 3: think it's really really bright because if we can get
• 26:05
  Speaker 3: people to take a simple blood test and to understand
• 26:09
  Speaker 3: these numbers, if your LP litle A is higher, if
• 26:12
  Speaker 3: it is one hundred and twenty five animals per liter or.
• 26:16
  Speaker 2: Higher, then then you're at high risk.
• 26:19
  Speaker 3: And the interesting thing about LP litlea is that it's
• 26:23
  Speaker 3: ninety percent genetically driven.
• 26:25
  Speaker 2: So it's a very simple equation.
• 26:27
  Speaker 3: If it's high you have a mutation, you're at risk,
• 26:30
  Speaker 3: and then therapies will be coming out that currently show
• 26:35
  Speaker 3: Dennis the ability to lower LP LITOA.
• 26:38
  Speaker 2: The current.
• 26:40
  Speaker 3: Medicines that are in late stage clinical trials anywhere from
• 26:43
  Speaker 3: eighty percent to ninety six or ninety eight percent, so
• 26:48
  Speaker 3: dramatically able to lower those levels, and hopefully we'll see
• 26:53
  Speaker 3: in the clinical trials that will mean protecting people from
• 26:56
  Speaker 3: cardiobasc or disease.
• 26:57
  Speaker 1: Well, that's pretty extraordinary, and speaking of medicines, and I
• 27:00
  Speaker 1: realize that everybody's different because there is an umbrella of
• 27:03
  Speaker 1: what you can get here, but maybe to your journey
• 27:05
  Speaker 1: and you specifically people wanting to know. So I have this,
• 27:09
  Speaker 1: this happened to me. What kind of lifestyle do you have?
• 27:12
  Speaker 1: What kind of medications? If you can't share with us,
• 27:14
  Speaker 1: you don't have to, but what's lifestyle like for you?
• 27:16
  Speaker 1: Right now?
• 27:17
  Speaker 2: I'm happy to you know.
• 27:18
  Speaker 3: I prioritize what would be considered a heart healthy lifestyle.
• 27:24
  Speaker 3: I make sure that I walk and exercise every day
• 27:29
  Speaker 3: as much as I can. When I'm sitting too long,
• 27:31
  Speaker 3: I stand up because we all know that's important. Now,
• 27:35
  Speaker 3: you know, I've told my daughters who also have inherited
• 27:37
  Speaker 3: the condition. They can never smoke under any condition, under
• 27:40
  Speaker 3: any circumstances anything. And I eat a Mediterranean diet and
• 27:48
  Speaker 3: I take three medications on a regular basis currently to
• 27:54
  Speaker 3: lower my LDL and one of those medications also has
• 27:58
  Speaker 3: does lower l P. That's not its indication, but it
• 28:03
  Speaker 3: also does lower LP little a not as much as
• 28:06
  Speaker 3: the medications that'll be coming out to affect it directly.
• 28:09
  Speaker 3: But it's really a very easy lifestyle to live.
• 28:15
  Speaker 2: Once you wrap your head around it.
• 28:18
  Speaker 1: So, Catherine, we just have a couple of minutes left.
• 28:19
  Speaker 1: I'd love to get some final thoughts from you. We'll
• 28:22
  Speaker 1: give the website one more time, also how to donate
• 28:24
  Speaker 1: be a part of Familyheart Foundation. And by the way, though,
• 28:28
  Speaker 1: whoever designed the website, there's a lot of information on there,
• 28:31
  Speaker 1: and it's beautiful and it's easy to navigate, so I
• 28:33
  Speaker 1: want to let everybody know that there's a lot on
• 28:35
  Speaker 1: there to digest, but it's easy to kind of move
• 28:37
  Speaker 1: around a little bit. And maybe if you have any
• 28:39
  Speaker 1: upcoming events, but just maybe some final thoughts from you,
• 28:41
  Speaker 1: and then we'll give the website and then we'll finish up.
• 28:44
  Speaker 1: But the floor is yours.
• 28:45
  Speaker 3: Thank you, so much, Dennis. If someone would like to
• 28:47
  Speaker 3: learn more about LP LITTLEA and what they can do
• 28:50
  Speaker 3: about it, they can go to find LPA dot org.
• 28:54
  Speaker 3: That'll take them directly to the page where they'll find
• 28:57
  Speaker 3: a lot about LP LITTLEA. And I would just say
• 29:03
  Speaker 3: that to remember that everyone should be screened for LP
• 29:07
  Speaker 3: LITTLEA and you can really help yourself to understand if
• 29:11
  Speaker 3: you're at risk or not for one of the leading
• 29:14
  Speaker 3: causes of illness and death, and that.
• 29:16
  Speaker 2: It's really a story of hope.
• 29:18
  Speaker 3: If you find out that you're impacted by this condition
• 29:22
  Speaker 3: within now and in the next few years, there's going
• 29:26
  Speaker 3: to be a lot that you can do to help
• 29:27
  Speaker 3: yourself and your family.
• 29:30
  Speaker 1: All right, well, listen, I'm glad we had you in
• 29:32
  Speaker 1: the program. Catherine. It's just so a pleasure to meet you.
• 29:35
  Speaker 1: And once again I started this conversation by saying, I'm
• 29:38
  Speaker 1: in awe of people where something really brutal happens, they
• 29:41
  Speaker 1: handle that part of it, but then they take it
• 29:42
  Speaker 1: the next level to help other people out there. What
• 29:45
  Speaker 1: you've done when it comes to familyheart foundations. So you're
• 29:47
  Speaker 1: doing terrific work with your team. I want to stay
• 29:50
  Speaker 1: in touch with you, but thank you so much for
• 29:51
  Speaker 1: your time and we really appreciate you joining us on
• 29:53
  Speaker 1: community DC.
• 29:54
  Speaker 2: Thank you