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Taking a Breath: A Stop the Clot Podcast is a show committed to shining a light on the dangers of blood clots and breathing life into The National Blood Clot Alliance’s mission of pushing these preventable killers to the forefront of public discourse. We will hear the stories of notable blood clot survivors like Olympic medalists Katie Hoff Anderson & Tatyana McFadden, among others, as well as the expertise of medical professionals to provide connection, empathy and resources to listeners like you. At Stop the Clot we know the patient because we are the patient. Journey through this miraculous series with hosts and blood clot survivors Leslie Lake and Todd Robertson as they, with the help of listeners like you, change the way we think about blood clots. Join us as we collectively stop the clot.
The National Blood Clot Alliance (NBCA) is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis and pulmonary embolism.
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In that sudden and devastating moment, your life splits between what came before and the difficult future to come. The next morning, she called her good friends, who she often went to school with. She had two quizzes the next morning and wasn't going to miss them, and said, I don't think I can drive myself to school. Would you come pick me up? So she managed to get herself downstairs in her front yard, meeting her friends, and she collapsed on her front yard.
In the disillusioned and impossible reality of losing a child, how do you find a way forward? They were able to keep her alive for two days, hoping that they would be able to pull her out of her coma. And unfortunately, they did some testing about the second day and found out that she no longer had any brain activity. So we had to make the excruciating decision to take her off life support.
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Every six minutes, somebody in America dies of a blood clot. Isn't it time people started to pay attention? We're here to change that statistic. Welcome to Taking a Breath, a Stop the Clot podcast. An award-winning podcast dedicated to bringing awareness of the dangers of blood clots from the clotting disorders community to the world. With the help of many notable blood clot survivors, we are here to give you the knowledge and the skills you need to prevent this silent killer.
My name is Leslie Lake. I am the president of the National Blood Clot Alliance and I am a blood clot survivor. And my name is Todd Robertson. I'm the patient engagement liaison for the National Blood Clot Alliance and I am a seven time blood clot survivor. And we're here to stop the clot.
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It's an unimaginable feeling navigating such sudden and devastating loss. Finding your footing in future in a world where your child will not have the same opportunity. In the wake of such grief, we find ourselves community and solace in the spaces that resonate the most with our experiences. Our guest today finds herself championing forward to enact systemic change in awareness to prevent this debilitating tragedy from happening to any other unsuspecting families.
Here to discuss her journey as both a mother and a blood clot prevention advocate. In remembrance of her daughter Anna Frutiger, please welcome Sarah Wassener.
My name is Sarah Wassenaar. I am a retired dentist. I have been active with the National Blood Clot Alliance as a board member for nine years and board chair, I believe, for three, and continue to work with that organization to raise awareness about blood clots in any way I can. Anna was, I think, the daughter every parent would love to have. She was beautiful.
intelligent, very kind, loving. She was very much tuned into her health in so many ways. She was 23 years old when she passed from a saddle embolism and she had no clue that she had anything serious brewing in her life. Anna's background a little bit is that she had just finished her first year of dental school at University of Pittsburgh.
And before that, she had attended college at Kenyon College in Ohio and had been very active there. She worked in the admissions office. She was on the women's tennis team, summer researcher, molecular biology major, very active in her sorority. It was the perfect place for her. She absolutely loved it. So she had always had the dream of wanting to become a dentist. Her father and I are both dentists.
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And from the time she was young, she always thought that would be the best profession in the world for her. Right between high school and going on to college, she worked incredibly hard, was accepted to several dental schools. Much to my dismay, she decided to go out of state because our family lives in Michigan, so, and we had some great dental schools in Michigan, but she had some friends that were in Pittsburgh and it just seemed like a good fit for her, so, and she loved it. She loved.
Pittsburgh, she loved her friends, and she was basically living her dream. So that's Anna in a nutshell. She was in dental school at the time, so unfortunately her dad and I weren't with her on the day of the event, but she had been complaining of symptoms about four months prior to May 20th. She was complaining of pain in her leg. She was training for a half marathon at the time, so she was running a lot and she kept
telling us that she was short of breath much of the time when she worked out, which was unusual for her because she was an athlete in high school and in college and those things didn't typically bother her. So we encouraged her thinking that it was possibly an orthopedic issue with a muscle pull or something because the complaint she had was that she had pain on the calf and behind her knee. She did go see the orthopedic clinic at University of Pittsburgh. The doctor
did a thorough medical history, found out she was on a third generation oral contraceptive, and actually suspected she might have a blood clot. So they did a Doppler and got a negative reading from it. We later found out that Dopplers are only about 30 % accurate at the time, and there are other tests that could have been done that were not at the time, but.
She went back about three weeks after that for a follow-up visit and everything looked normal with her leg. There was no swelling. And so she was dismissed from the orthopedic clinic. Right after that, this was about maybe two or three weeks prior to May 20th, she did a family vacation with us. So we were with her for whole week. Didn't really complain.
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about any issues when she was with us, but it was about a six hour plane ride from Pittsburgh to where we vacationed and back, you know, on two different weekends. And then right before she was finishing up her last semester of dental school and did a weekend trip on one of the mega buses to New York City, which is about an eight hour trip on a bus, you know, sedentary for the whole time. She told us she only had about a 10 minute break.
So getting now to the 24 hours before she passed, we talked to her the night she got back from this trip to New York and she had carried groceries up to her apartment and she kept telling me that she was short of breath and didn't know if she could make it up the stairs. And we both just attributed it to the stress of school, being sad about leaving her friends after a great weekend. And I just said, get some rest tonight, you know, you'll probably feel better in the morning.
Of course, in hindsight, I know that if I had been with her, there might have been a different outcome. The next morning, she called her good friends, who she often went to school with. She had two quizzes the next morning, I wasn't going to miss them, and said, I don't think I can drive myself to school, would you come pick me up? So she managed to get herself downstairs in her front yard, meeting her friends, and she collapsed on her front yard.
passed out momentarily and they called 911 and they took her to Shadyside Hospital in Pittsburgh, which is an excellent hospital. She was awake when she got in the ambulance and she was awake when she arrived at the Pittsburgh emergency room. She actually was talking to the ER physician when she arrested. So she couldn't have been at a better place as far as having someone right there immediately to take care of her.
They did CPR for about 45 minutes. And then fortunately, the head thoracic surgeon was at the hospital at the time and they took her into emergency surgery to try to dislodge the clot. She ended up having a saddle pulmonary embolism, which is a blockage of both lungs. My husband and I were, I was in Arizona at a class and my husband was practicing in Michigan. We both got to Pittsburgh as soon as we could.
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and they were able to keep her alive for two days, hoping that they would be able to pull her out of her coma. unfortunately, they did some testing about the second day and found out that she no longer had any brain activity. So we had to make the excruciating decision to take her off life support. One decision we did make is we did donate her organs to the core organization in Pittsburgh, so.
She saved lives right away and she would have loved knowing that, I know. So it was a unbelievably difficult time for our family. We, as you can imagine, immediately started trying to find answers. We were fortunate to be able to go back to Pittsburgh about a month after she passed and meet with her surgical team and nurses and learn more about what may have happened.
We do believe that it was just a perfect storm for her of her birth control pills and her travel. At the same time, one of her best friends from college was working at the National Institute of Health in Washington, D.C. and happened to meet the then executive director of the National Blood Clawed Alliance and put us in touch. So that fall, we made a trip to New York and actually went to their headquarters, met with them.
and started learning about what the National Blood Clot Alliance was all about. And they really embraced us and invited us to Chicago to attend a meeting of oncologists and hematologists where we learned even more about clotting mechanisms. In the meantime, our family was all tested for clotting disorders because they thought there was a chance that we may have had some genetic connection, which we didn't. And that
became my journey anyway. My husband, every family handles grief in different ways. He was a supporter. We have a son as well who was in college at the time and he's been an amazing supporter. done Iron Men and triathlons in Chicago in her memory and raised funds for the National Blood Cloud Alliance as well. But about a year or two after I had gotten involved with the National Blood Cloud Alliance, I was asked to be on the board.
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which was a real honor. And that became my journey. We had some ups and downs along the way, but I met some incredible people, learned so much more than I ever thought I could about blood clots. And some of the things that we tried to do over those years was educate our profession. My husband and I, as I said, are both dentists. So we spoke at dental meetings around the state of Michigan. We wrote an article for the Michigan Dental Association Journal.
trying to raise awareness. had some physicians who were involved through the scientific branch of the MBCA who wrote with us and kind of gave some of the technical knowledge that we didn't have to share. So that was kind of my journey into MBCA. As dental professionals, we did have knowledge of blood clots, obviously, because we were always talking to patients about
I mean, we needed to know about clotting for when we worked on people's mouths. So we were aware of it, but I honestly didn't feel like I was in a position to talk to my patients the way I probably should have. So we had a knowledge of blood clots, but I was not familiar to the extent that I wish I had been with signs and symptoms, how much they mimic other health issues. I think that was a real clue because I don't think
our family or even Anna, you know, you don't expect a 23 year old healthy person to be at risk for something that could be fatal. And there were so many things that we just chalked it up to, no, she's tired from studying or she's stressed from this or that. She's been running a lot. There were a lot of ways we unexplained some very classic signs. I don't have time to share all the stories here today, but there are countless stories of
friends of Anna's, friends of ours, who I believe their lives were saved because they heard the story and remembered it and shared it. I just had a former patient of mine, mother, message me to let me know that because of the awareness we brought in our dental practice, that her daughter had symptoms of a DVT and ended up saving her life by going to the emergency room. And she wanted me to know and it's,
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several years later from when she heard this story, but it stuck with her. So those kinds of things just make me realize how important it is to share stories and information. Prevention and awareness starts with a conversation. For communities who are historically misdiagnosed or dismissed at the point of care, conversations around systemic change are what's going to save lives. During Women's Health Month and every month thereafter,
It is imperative we keep the conversation going in fighting for medical equity and informed clotting prevention strategies. Here to discuss women's health and centers of excellence as spaces for systemic change. This is Representative Hillary Skolton from Michigan's third congressional district. We are here today with Congresswoman Hillary Skolton from the third district of Michigan and the district's first woman to hold the seat, which is
fantastic and amazing and somewhat apropos because we're doing this during Women's Health Month in particular and yesterday was Mother's Day. So delighted to have you here with us today. Thank you so much for having me, Leslie. And it's just been such an honor to get to know you over the last couple of years. We are so proud of the work that's happening right here in West Michigan related to the Stop the Clot.
work. And I'm just honored to be here today to talk about this. Being the first woman and mother in history to represent this district is so much more than just a tagline. It means that the issues that face women and mothers are top of mind for me as real personal issues. It also means we're not going to be afraid to get uncomfortable and talk about things like menopause, perimenopause, menstruation for young girls. And those should not be taboo.
words, but they've been critically underfunded, under researched, under studied. And having more women at the table who are able to advocate for women's health priorities is a game changer. So it's such an honor to do this work. thank you. And back at you, obviously, because you're leading this these issues on the congressional level. So today we're going to be talking about women and blonde clots specifically.
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which includes one of your constituents, Sarah Wassener, who I know you've met Sarah before. And she lost her beautiful daughter, Anna, to a preventable blood clot, a pulmonary embolism that unfortunately claimed her life at the age of 23. She's from your district. You know she lost her daughter. She is our former NBCA board chair. I had very big shoes to fill when I became board chair after Sarah. When you learned about her story, about Anna's story, what went through your mind?
absolute heartbreak. As a mom myself, it's like you can feel that physical pain. And when you think about the fact that what more could we have done, right, through additional research, additional prevention, screening, testing, medications, who wouldn't want to make those types of investments to protect their child? It's such an honor that she is willing to take that pain and turn it into purpose.
for the community. And I think her story has a profound impact on so many people that she shares it with. That desire to educate, but also that sadness that she carries with her because this should never ever have happened. It's so preventable. And that's one of the things that we want women in particular to learn, that these are preventable events. And your comment about menstruation and birth control and hormonal replacement therapy, like we need to be having these conversations to protect people.
So Grand Rapids is actually home to the first ever Center of Excellence in the country, in the United States, at Coral Hill Health Butterworth, which is really exciting. So what does that mean for you, actually, that your community is actually leading the way on this issue nationally? I'm just full of pride, but not surprise, that this would happen in a place like West Michigan. We're innovators, we're change makers. And at the heart of this Core of Excellence is a standard that
does not accept no for an answer that sees beyond the current possibilities to what could be possible in the future. And that always puts patients first. I think that is truly the West Michigan way. So it is no surprise to me that we would, of course, be home to the first Center for Excellence. Well, it's exciting to see. And since this happened a few years ago, there are, I think, 10 Centers of Excellence across the country.
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including our first pediatric center of excellence, which just happened. So it's very exciting to see this all roll out. And Corwell was the first one. So kudos to Grand Rapids and West Michigan. I want to switch topics a little bit and talk about women's health and maternal mortality specifically. So I know you know the stats on this now, but blood clots are a leading killer of new mothers in the United States. Yet most women have never actually heard of a DVT or PE. Unfortunately, lot of clinicians have.
not heard of it either. As a member of the Women's Caucus and the Black Maternal Health Caucus in particular, how does that gap strike you? It's shocking that in 2026, we could still have health disparities like this in a high income nation like the United States of America. And I think it's indicative of a larger problem that we see where far too often women and especially women of color are not listened to.
There are huge expectations that, especially around childbirth and postpartum, there's suffering that comes with it and women are just expected to push through. And I think it takes a lot for women to get the attention that they need when they are raising concerns about some of the symptoms that they are having. It's indicative that we need more awareness, more training, more testing and diagnosis to become a standard.
routine of postpartum care, and that women themselves need to be educated around the signs that may develop between a doctor's visit when they're at home. And also, I think, also really learn how to advocate for themselves, right? Because I don't think that it's all just careless doctors that are dismissing patients, though we do know that there is things like
gender bias and race-based bias that we see in medical treatment, but also doctors are humans too, and they're busy as well, and everyone can miss something. And as someone who has been a patient myself, I know we are our own best advocates, right? And women are too quick to say, well, my doctor didn't listen to me the first time, I must be wrong, right? How can we empower and educate women to say, I'm really gonna make sure I'm heard on?
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You know, I feel like my doctor wasn't really hearing me. How can I push back? How can I really make myself heard in a meaningful way that gets the results that I need? Yeah, in a meaningful way. know, unfortunately, women are, and we see this so often on the blood clot side, where women try to advocate for themselves and they're being told they're hysterical when they go into the hospital setting. And blood clots affect men and women pretty evenly, but women have unique risk during their lifetime related to blood clots.
But we do know that if a man and a woman show up with the same symptoms in an emergency room, he's more likely to be treated sooner and survive than she is. And for black women, it's even worse. We have an obligation now to really raise the awareness on this issue. So one of the things that NBC is doing is we actually just launched our Women in Blood Clots Virtual Institute. That is a free, comprehensive blood clot education platform.
built specifically for women and clinicians. And it's actually going to have an advisory board. This is the first time this has ever been done, where we're going to have patients, we're going to have family members, we're going to have clinicians, and maybe some legislative folks too, but they're all going to be female addressing this issue. What would access to that kind of resource mean for the women in your district? It would be just such an incredible game changer. Access to trusted medical information.
saves lives. It's like we were just talking about, right? When women have the awareness of what's happening in their bodies, the signs, the symptoms to look for, they're better prepared to advocate for themselves, better prepared to understand when maybe they have been dismissed, to say, hey, wait a second, I know specifically what I'm going to say to this doctor to prompt him or her to really pay attention to the specifics around
my symptoms and also cause them to get treatments sooner because I think that we have internalized so much of that. I just have to push through. I just have to push through. Here's the first sign or symptom. Well, I'm just going to ignore it. You know, it'll go away. I can handle the pain. I can handle the, you know, the fatigue, the nausea, the dizziness, whatever. And it I think teaches us to say, no, let's pay attention to what our bodies are trying to tell us so that we can accurately convey those to the doctor and get the help we need.
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Women tend not to be so great at that because they are doing so many things and caring for so many other people. And sometimes you need to take a step back and say, hey, you know what? I need to focus on myself if something doesn't feel right. Nobody knows your body like you do. I'm one of those people, like so many other women, that have a gazillion things going on. And I'm a blood clot survivor. And I'm very thankful that I took a step back and said, hey, there's something not normal here.
because it could have been the difference between life and death for me. So I'm very fortunate that I did take that step back. But I want to come back to the health equity comment. So we talked about the fact that Black women face dramatically higher rates of VTE in the maternal mortality issues. For Black women, blood clots represent the third leading cause of death in this country. What is the work of the Black Maternal Health Caucus teaching you about closing that gap? These disparities that exist are
completely unacceptable. And I think one of the things that I have learned working with the Black Maternal Health Caucus is that far too often in health care settings, in legislative settings, including Congress, we have accepted these disparities as a fact of life. And they are a matter of life and death for far too many women. And it is unacceptable. When I was first learning about these statistics, I thought, my goodness.
Why aren't we doing something about this immediately? How can we possibly accept this in a country like ours? And listen, I know we're not getting political on this podcast, but I do think it is important to recognize that when you have people in positions of power dismissing racial disparities that are brought up as woke ideology or as fake DEI, it really undermines those health care claims. And it's dangerous.
You know, I'm not a hyperbolic person by nature. You know, my kids actually joke it's going to be, you know, on my tombstone, it'll be written, it'll be fine. You know, a quote from, it'll be fine. But I really do mean it when we're taking a step back and saying any time that you're trying to raise racial disparities, that it's just, it's, it's DEI and a woke agenda.
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It's just not true. It's born out in the statistics that Black women have a harder time being heard, especially in women's healthcare settings and maternal healthcare settings. And we have to pay attention to that. So I think it's just essential that we learn appropriate ways to talk about this, to have civil conversations about this.
You know, I do worry that some of this backlash against DEI has created a fear for people to have a civil conversation around this because they are afraid of being labeled radical or woke. we're just talking about data and science and how we can make sure that no matter your gender, no matter the color of your skin, when you walk into a health care setting, you are going to get the same.
treatment because that is what the Hippocratic oath requires, Is that doctors do the best that they can for anyone regardless of their circumstances. And I think when you take it down to the individual level, people want to help other people and it shouldn't be politicized and letters should not mean bad things or an inability to have a conversation. This is about protecting people, making them aware of
science and making sure that no family loses their mother to a preventable blood clot. can tell you I've met countless families and it's just heartbreaking that have lived through this that never should have experienced this with it's preventable. So you also sit on the Rural Health Caucus Committee. So you're extremely busy. And the National Blood Clot Alliance actually has a bus tour right now going through rural Mississippi.
So we're bringing free screening to communities that have never had access before. We're going to communities where nobody has ever showed up to have the conversation. And so we're there to make sure that we're having the conversation, educate folks. What does that kind of community level work mean to you as a policymaker? it's essential. We want to get your bus out here to Michigan. We'll come.
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We can do we can partner and do some office hours out there to help people with their social security and health care and let's do all the federal services. I mean, we have to be meeting people where they are at right now. And as we see cuts to Medicaid and Medicare really impacting the services that people can provide, they're going to be less likely to travel in.
to a hospital and early screening and detection we know not only is life saving, it is cost saving, right? The earlier you detect, the earlier you can start to treat, the more money that you're gonna save to the individual but also to the overall healthcare system which is a burden that we all bear. So I think that this is, yeah, again, not only a life saving measure but a cost saving measure and I think it's just incredible that you're doing that work. We'd love to see how we can continue to support it.
So we'll definitely have to get the big red bus to Michigan. This is our third actually bus tour that we've done in the last kind of 15 months. And to your point, nothing beats boots on the ground, bringing it to people, to their communities. And what's happened is it just has kind of like built upon itself. And we're kind of in the business now of driving around on a bus, educating people about blood clots. So if you think about Congress specifically, what needs to be done differently to ensure that rural hospitals and rural patients are not left behind?
on something as preventable as blood clot death or a blood clot diagnosis, especially for women. As we talked about before, we have specific risks for blood clots during the course of our life. Our rural communities cannot be an afterthought. And far too often in terms of policymaking, they are. Too much of our policy, I think, is driven by urban America at the expense of rural Americans. And they both matter.
One of things I love most about my district, Leslie, is that I have two cities that anchor my district, multiple cities throughout, but two really big cities throughout West Michigan, Grand Rapids, which is the second largest city in the state of Michigan, and then Muskegon on the Lakeshore side, you've also got Grand Haven there. And then throughout, in between is large swaths of rural and suburban. And so I'm constantly keeping in mind.
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the beautiful diversity of America and what runs right through my district. You there is a spot when I'm driving from one end of the district to the next, always drop cell phone coverage. You know, you're right out there. And I think it's like a stark reminder of where I am. think about it all the time when it happens. And so I think, again, it's just about, it's about prioritization and making sure that those voices are heard and at the table. The main reasons I joined the Rural Health Caucus
is because of those communities in my district and wanting them to know that I see them, we're fighting for them. We've been championing telehealth access, more access to broadband that can support those telehealth services that they do. And, you know, it's not only about actually being able to get in and see a physical doctor, but, you know, the rural communities that are oftentimes they're farmers, they don't have the time during a busy season to drive into the city.
deal with the parking, get into where they need to go during business hours. So coming out and meeting them where they're at is essential. Those are great points. We're meeting with a doctor who's based in Mississippi who covers 150 mile radius seeing patients. He's the only clinician in this particular location, which is, I I live in New York City. I could throw a penny and probably reach 10 doctors from my block. But these folks just don't have access.
One of the things that we're going to do when we finish this tour is we're going to share this information with you sitting on these important committees so that you can hear directly from people in other states what they're dealing with so that you folks can actually influence policy and make the right decisions for people. So we're excited to get that to you when we finish. I want to circle back to Sarah. So she's going to be listening to this podcast. What would you like to say to her? Hi, Sarah. I want to say thank you.
I want to say thank you for taking your pain and turning it into purpose. I truly believe that your story will save lives. for the women that are listening to this podcast, know, since we started, we've reached close to a hundred, five hundred thousand people, many of are women actually, which is it's our third season and it just keeps growing and building and building upon this. What would you like to say to the women listening today? Because a lot of women feel as though their voice is not heard.
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I think it's so essential to learn the symptoms of how to stop a clot so that you can stop it or treat it. As we mentioned before, it is so important that women pay attention, they're aware, so that not only they can recognize and diagnose it in themselves, but that they can convey that to their doctor and not necessarily be dismissed. And there's a great acronym, right? And I know you'll help me, Leslie, to make sure I get it right, but stop.
clot, right? Swelling in your legs, tenderness in your legs, coughing up blood out of breath. Pass out, chest pain, leg discoloration, racing heart, the overdrive that's the O and then time. Time to call 911 if you experience any of those. And for women, for black women in particular, a lot of times the red and blue hue that we mentioned on the leg actually doesn't present itself like that because of different skin color. And so
that's another risk factor they need to be aware of to communicate to your doctor who may say, your leg is swollen, but it's not red, it's not blue. Well, it actually depends on the skin color. And the same thing with your oxygen level, that little thing that when you go to the hospital or the doctor, they put on your finger to test your oxygen level, works differently for black skin than it does actually for white skin. And so folks need to be aware of all of this as well. It's just so important having you here today because you do have a voice and you do have a platform.
And so saying to women that are listening to us, your voice matters means so much to people. So thank you for advocating for all of us on this really important topic. So, okay, I know I said we weren't gonna get political, but this one might kind of like be in a gray zone for you. Political is just policies that govern people's lives. I think it's really important that we talk about it. And it's always about the how, so lay it on me.
Blood clots kill more people than colon cancer, which most folks don't realize. More people than opioids. We hear a lot about colon cancer. We hear a lot about opioids. More than HIV, AIDS, breast cancer, and motor vehicle accidents combined. Yet there is no dedicated federal funding for blood clot education and awareness. It never has been. As a member of Congress, how do you guide a grassroots organization like us to keep pushing for awareness at the national level? Because sometimes, got to be honest, it gets lonely.
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And after years of advocating for what feels like nothing, we become exhausted. We need a shot in the arm to really get re-energized, but it's hard. And with women's health in particular, feeling as though we're being a little bit attacked here, help us. Yeah. The word of advice that I would give is no major public health battle, no major political battle, no battle for rights was ever
one overnight, right? It was a long, long fight, a long journey. Imagine what would have happened if people gave up in the middle of it, right? If at the start of the HIV and AIDS epidemic, you know, when it was being dismissed, it was just assumed that this was something that was only exclusive to the gay community as if that was some excuse not to treat it or address it, that this was not worthy of the type of research and funding that we needed.
Imagine what would have happened if those early public health advocates would have taken no for an answer. Where would we have been? The journey is long, but the future depends on people moving the ball forward a little bit at a time. And I think that these battles require active and engaged citizens and
elected officials who are willing to respond to them and engage. And that's exactly why I wanted to come on the podcast today and why I wanted to address your listeners is so that you and folks tuning in here who know that they know that people who have been impacted by a blood clot in their life know. You have a representative in Congress who understands the importance of this and is going to continue fighting for federal funding to address this critically important public health issue.
So beautifully said, you just gave me the shot in the arm that I need to keep trucking along here. On behalf of all of us at the National Blood Clot Alliance and all the women, all the people that we serve, thank you so much for taking the time to come and spend some time with us on the podcast today. Wishing you much success on your next term and crushing it. in, I don't know, maybe four years, we'll take out this podcast and dust it off when you're running for president.
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And you're way up in the polls.
Oh, you're too funny. will the best pie. No, but seriously, thank you. Thank you so much for everything you do for us every single day. I know it's not easy for you also, and we do greatly appreciate it. Thank you. I appreciate it so much. Thank you so much, Leslie. I feel like every time I hear Anna's story, I feel like I'm hearing it for the first time. I've now been working with NBCA since...
end of 2018 and it just hits me every single time you tell the story. last night I was looking at a picture of the two of you together and I was like, oh my God, they look like twins. Thank you. You're welcome. She was beautiful. You're beautiful in the picture. And it was just like, there was just such happiness that it resonated off the picture from the two of you together. It was very touching. I want to pivot into some
some different areas now, but before we do that, what would you like people to know? And I know we kind of touched on this, but maybe just to focus on the women's angle a little bit, because May is Women's Health Month and we're going to be sharing this during the month of May so that we can raise awareness for everybody, specifically for women, because they do have unique risk factors associated with blood clots. But what would you want people to know about blood clots, especially women, especially young women?
but also the clinicians who treat them. You hit all the people that I would like to know more. There are so many more mid-level providers now that are caring for women. And I found out years later that the first people that sometimes are prescribing oral contraceptives are college health clinics. Sometimes they're nurse practitioners or physician assistants in a family medicine practice. And I really would like
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those providers to be screening the people they're prescribing to make sure that these women know their family histories, that they know what the signs and symptoms and risk factors are. I think NBCA has gone a long way to help educate physicians, but there's a long way to go. You know, we're working with hospitals now, but I think OB-GYNs and I know several women who went through multiple miscarriages because they had no idea that they
had a clotting factor that was preventing them from getting pregnant. And they, I know, would want that information to be shared more widely in the people that are trying to get pregnant or are pregnant. So I think women especially need to, I mean, even with hormone replacement therapy, you know, we all, right through the end of our lives, we need to be knowing what those risk factors are and knowing the difference between.
the mimicking that it can do of other things because so many women don't realize that the signs and symptoms that they're having are because of a pill they're taking or a family history that they have. So those are the things that I really feel that we can continue to work on. You raise a really good point about educating the people that are interfacing with patients these days because it has become multidisciplinary.
And I feel like, you know, we've done a good job educating some groups and now all of a sudden we have all these new people that we need to educate. And there's not an appreciation for the fact that this truly can happen to anybody, whether you're 19 years old or 90 years old. There are risk factors in which you've touched upon. So I think you said that very eloquently. So I want to change direction a little bit here. We're going to head back into Michigan now. So how did it feel for you to see
NBCA actually designate its first VTE, Venus Thromboembolism Center of Excellence. know, NBCA has been around since 2003 and this designation happened 21 years after NBCA was launched. How did that feel? And also because it's in your backyard. It's Corwell Health. It's in Grand Rapids, Michigan. It's in your backyard. How did that make you feel? What was that like for you? And also,
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Your representative, Hillary Skolton, showed up the day that we did the designation. She didn't know anything about blood clots either, really. Now she does. We educated her that day. She met you. How does that make you feel to know that it's on a national stage now and that the first one actually happened in your backyard? I was incredibly proud of the work that NBCA had done to get to that point. I was...
So impressed with the staff at Corwell that made it happen. I didn't really know what to expect going into that presentation, but there was press there. Representative Shloten was there. It was just amazing. And the fact that it's in the Grand Rapids metropolitan area was even more special. The other place that I was really proud of was my Michigan Health in Midland getting a designation this last year. I served on the board there.
and I still serve on their VTE committee and their quality and safety committee. And I really feel that some of the awareness that I brought to that hospital system had an effect long-term on them getting that designation as well. You definitely laid the groundwork for that organization in particular. And this is the beginning of a movement now. We've got 10 centers of excellence in two years.
We have the first VTE pediatric center of excellence in the country with Johns Hopkins All Children. And you started this work because you started the clinical work in these hospitals. And also we're addressing probably the biggest unmet need, is hospital associated VTE where almost half of this actually takes place. So if we structure this correctly, we really should be able to make significant impact on decreasing the incidence and mortality.
of blood clots. So thank you, Sarah, for that. So the other thing that I want to touch base on with you, I want to pivot and share with our audience something that we're planning to do that we're going to start working on this summer. And we're going to roll it out probably next fall into the winter and then into the 2027 legislative session. We're going to put forth a blood clot prevention bill named after Anna. And we've done this in Florida.
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we're doing in Oklahoma, we're hopeful that by the time this airs, we might actually know if the bill has gone through in Oklahoma named after all these beautiful young people that have succumbed to bucklots. So how does that feel? And how do you think Anna would feel knowing that we're going to take this on and go down this road, that it's going be named after her and that her legacy will truly live on, hopefully saving people's lives? I'm almost speechless thinking about it. She would be
She would be elated as well as all her friends and connections that she has. But it's always been a dream of mine that there would be legislation that would affect all our states. And you've done a great job in Washington, DC. I was fortunate to be part of a lobbying delegation there a few years ago, letting our congressional representatives know about blood clots.
but to have it in Michigan just means the world to me. And I'm so excited to be part of it and work on it and connect with my legislators across the state. Well, we're excited to work with you on this and I know this is going to get through. I know it's going to be a lot of work. We already have a tremendous amount of support from you, from us, from other clinicians, from other patients. I don't think we've ever seen
Before we even really started to hit the ground running, so much support for our legislative activity as we are in Michigan. So I'm excited to go down this path with you. I'm delighted to do this in Anna's name. wow. We are truly honored, Leslie, that the National Blood Cloud Alliance has chosen Michigan to be one of the first states to make this happen. And to name it in honor of Anna just is incredible. The two of you and your family have saved a lot of lives.
I know this is a very painful thing to relive on a regular basis, but what you have all done for other people, it's us that should be thanking you, including myself, because I'm June 2018 blood clot survivor and the work that you did at the Blood Clot Alliance was available to me when I needed it. So we all hopefully try to pay this forward to other people that are coming behind us. Yeah, you've been incredible. Sarah, I want to thank you today for joining us on Taking a Breath.
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This has been just a tremendous opportunity to speak with you and also talk and learn more about Anna. And we thank you for everything that you have done for the patient community and the public. And we're looking forward to knocking it out of the park with this legislative bill in Michigan. And again, just thank you so much for everything that you've done. It's been my honor to be on this podcast and I'm excited to share it with all my friends and the world out there.
Thank you for asking me to be part of it. It's an And thank you for helping to raise awareness during Women's Health Month in particular.
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Thank you for joining us on another episode of Taking a Breath. We want to thank Sarah one more time for sharing her journey with us here today, as well as the amazing work she continues to do in Anna's name. A special thank you to Representative Hilary Skolton for her perspective and dedication to this cause. For more information on risk prevention and community, please visit stoptheclot.org forward slash women in blood clots and
If you wish to aid in our efforts of blood clot awareness, please consider donating to our cause at stoptheclot.org forward slash donate. We know the patient because we are the patient. Together with listeners like you, we can collectively stop the clot.
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For more information, visit StopTheClaw.org.
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