 Welcome and thank you so much for joining us today. It is Friday Eve and I'm thrilled to have all of you joining us to talk about leading a national organization or national coalition and we're going to have that conversation here with the CEO of women heart Selena Gore and before we jump into the episode. We of course want to make sure that you know exactly who we are. So Julia Patrick is the CEO of the American nonprofit Academy without your expertise and your your brainchild of this Julia we wouldn't be 400 episodes strong so thank you so much to you. I'm Jarrett Ransom I get to play with Julia each and every day by serving as her co-host it's a lot of fun also known as the nonprofit nerd so anytime you put me in the in the spotlight and you give me an opportunity to nerd out I will do just that. I'm the CEO of my firm the Raven group and we are so grateful to have the continued support from all of our presenting sponsors. These organizations these companies corporations they exist to help you do more good truly they are very helpful they lean in they they are here with a services systems resources to help you forward your mission throughout your community so if you have not checked out our sponsors please do because they are fan tastic and again today's episode we are so thrilled to have Miss Selena Gore with us again CEO of women heart welcome Selena well thank you so much that Selena are we saying your last name correctly thank you for asking Julia I'm so my I often say my last name it's like Gore with an egg at the end so I say Gore. Gore. Yeah perfect. Like a Gore it's a Gore. I like that better Jared. I love it well we are thrilled to have you here because this is such a big topic across our planet and our nation of course and you've done something really interesting by serving us up if you will with more of a coalition approach pulling in so many different voices around the country so we're really interested to find out how you've been able to do this and how the organization flourishes so first and foremost to back up a little talk to us about women heart and the mission and how you are advocating. Wonderful first of all I want to thank both of you for choosing women heart and myself to have a conversation with today. Women heart was started in 1999 and its mission is really to support educate and advocate for women living with or at risk of heart disease. Now what is really important about that mission is that it is the number one killer of women not in the US but around the world and unfortunately we have seen a decrease in the awareness of that fact. I think a lot of women a lot of people in general think that it's breast cancer that is the number one and yet we know that it is in fact heart disease. You know I'm somewhat shocked that I don't know that number one and I wonder how many women don't know that. This is some statistics that recently came up as a result of a survey that is done on a regular basis about the awareness of the general population and especially women about heart disease being the number one killer and like I said it's declined it is now about 56%. So just over one in two people one in two women in particular know that which is you know which makes you know and I don't have any joy in saying this which makes our job and our very existence that much more critical. Yes I don't need to say this to the two of you but in the non-profit world we are working to work ourselves out of a job. That is really our goal. If we achieve our mission we don't need to exist anymore and I had to say that 22 years later this issue is even bigger than it was in 1999 when it was started. You know you're so right so non-profits exist for one purpose and that's because there is a community problem right there is a community problem therefore a non-profit exists to help provide solution or solutions to this problem so Selena what you just shared is like we don't want to have this heart disease problem we would love for women heart to not be a necessity in the in the nation because so many women have understood the critical desire to educate ourselves as a female you know to really understand this you know Julia I was floored when I first learned that heart disease was the number one killer I actually did know that but it was shocking to me breast cancer also you know is is the other one where a lot of people are very I think more attuned and focused on right and and I'm I devil's advocate I don't know I'm curious if it's due to marketing right it's due to brand awareness it's due to um the color pink that is everywhere and so we are really elevated in that knowledge and to be more um I don't know just like focused on breast cancer as opposed to to a heart disease well Jared thank you for bringing all of that up because um it is it is something I I often can talk about for hours but I will I will just say this briefly you know breasts it obviously is intimately associated with womanhood yes I think that link I agree with you that it's marketing I agree with you that Susan G love Susan G Coleman and the you know pink ribbon campaigns have been incredible successes I would say in the nonprofit and the health field that is probably one of the case studies of really market success right in terms of communication and awareness raising heart disease is a couple of things working against us everyone's got a heart right so you know it's not unique it's not a unique problem to women um and then the other thing is it is so ubiquitous and the solutions you know cancer is sort of this like the scientists are working on it but heart disease the solutions rest with us and that is that's really challenging to say you yourself can prevent your heart disease yeah right because that package of Doritos you know is sitting right in front of you or that you know Netflix series as opposed to you know taking a walk in the park is is really you know easily at hand so you know it is it is more challenging to us as individuals to take control of our health and whereas breast cancer it you know it is a medical problem right that you go to specialists to solve and so anyway you know I we can talk about that for for days but um it is unique and I but I will leave you with this this thought around this which is that one in three women will die of heart disease as opposed to one in 30 women will die of breast cancer so it is a full 10 fold difference and yet one could argue that the awareness is probably lopsided in the opposite direction oh yeah years ago I had the opportunity to meet Nancy Brinker and and talk with her about how she started Susan G Coleman for her sister and it was riveting but you know she is a marketer and she had this amazing approach that just caught on and I think you're right I mean we see this in the non-profit sector you know we'll see maybe one shelter over another shelter or one food bank over another food bank and they might not be doing the same work or even maybe they're doing substandard work but because they're well marketed they become better funded they get better media attention community support it goes on and on and on. Exactly right yeah and issues are no different right you can say similarly AIDS as an issue really came to the fore for a lot of different reasons but it's you know it's still like bubbled up whereas in the global health world which I used to be a part of you know the tuberculosis and malaria people were saying wait a minute we were here first right two way more people so anyway it is you know we don't have to pick conditions one against the other but in our case we are screaming about heart disease given how many women it affects. So let's dig into that because I think it's a big question and that is how do you get heard when there's just so much going on and I would dare to say you've got an education start to like educate and then move forward like what does that look like for you. Let me let me talk let me let you in on our big secret because we have a secret weapon at women heart and those those secret weapons are what we call our women heart champions now champions are women who have survived a heart attack or have been diagnosed with heart failure or in one way or another are living with heart disease and these women having gone through their heart journeys came to women heart and said I want to make sure that I do what I can to ensure that no woman goes through this really difficult challenging time in their lives alone and they sign up to be women heart champions we send them to the Mayo Clinic so they go to Rochester Minnesota and they get trained by the leading cardiologists who focus on women the head of the women's heart center at at the Mayo Clinic and they not only learn about the biology and the medical aspects of heart disease they also importantly learn how to tell their story and this goes back to the question how do we do it how does women heart do it uniquely we start with women who have lived through the experience they come to Washington DC where we are based they testify on the hill when we when we are trying to pass legislation make policy they are at health fairs in their communities they run support groups for women you know who are just new to their heart journeys and they speak on panels and make sure that the patient's voice is part of any conversation about heart disease you know I I often laugh when I see panels at medical conferences talking about heart disease when there's no no patient you know anywhere to be found and I just think wait a minute here you know in medicine especially it is about the patient and so that is that is our kind of differentiator I would say and that is why our partners come to us because they are looking for the patient's voice so I love that you implement the woman's story and so personally because we have seen this time and time and time and time again that once we hear a story from a person we relate with this person we relate with the story there's something you know some synergy between between she and I and we'll say wow this could be me that's that's one concept right this could be me or I know someone who has experienced you know a heart attack survived and this is now the education and I think we've seen that which is why I say time and time and time and time again is because once we use our voice we tell our story and we share that in a very open way albeit grassroots it is still so powerful I think for those two reasons you know is that relatability and then also that connectivity yeah you know shared I want to share with you a story that I was so honored to witness some of our champions will also do bedside visits in hospital and I accompanying one of our champions in Kansas City on some rounds to women patients who were maybe waiting for their procedure whether that's an operation or whatever and I remember this woman that we visited who was in tears saying I am so scared I have no idea you know I basically I need to say my goodbyes now you know she was really really afraid and our champion sat down with her and said I was sitting in exactly the same place as you 10 years ago I had this exact same procedure that you are about to undergo and I can tell you it's hard but look at me now and you can be in the same place and I was blown away by that interaction and it's so hard to quantify the value of that you know and not you know we are asked to quantify impact right and yet how do you quantify that we look when we left we went downstairs and we had a few other meetings and this woman had her husband put her in a wheelchair wheel her down to again talk to Kathy to our to our champion because she didn't want to let go of the hope that Kathy offered her in that moment and so you know so we do that at the very intimate level of the patient in the hospital all the way through to policy advocacy you know here you know on the hill in Washington and that is the breath of women heart you know and what we we often say you know we go deep we may not go wide there are other organizations that go wide that have you know bigger much bigger reaches in women heart but we go deep and we're really proud of that you know when was this organization formed and I'm curious kind of the size if you'd be willing to share some of that with us so women heart was formed in 1999 that's right from range actually three women came together who happened to be interviewed for a magazine story about heart disease and they all shared with each other a very it turned out a very similar experience of being misdiagnosed of being told to go home because you're just having a panic attack right of being told that you know what you think it is it's not really this we might need to give you some meds for anxiety or to calm your calm your nerves down and it turns out that all of them have heart disease heart disease and so they came together again from a base of rage and so that is the origin story of women heart and which is why advocacy has been and continues to be a really key part of what we do in addition to providing that support that peer to peer support you know it is it is a it is a story that I think you know we have to remind ourselves about on a regular basis because as you all know running a non-profit means you are pulled in all sorts of different directions and oftentimes you need that reminder to say why are we here why do we exist why are we doing this work and I can tell you right now we are a small but mighty team Jarrett to your question about our size we have five staff but I I love to to compare us to Chihuahuas you know we have a really really big big bark but you look around the corner and here we are and we're you know small but mighty that is fantastic yeah I could relate so so much to to all of that and you're right with you know Julie and I share this often but there's 1.8 million non-profits in the US right 1.8 million and so to be a national organization and to have these challenges to be heard and to focus solely on women right how do you bring in the support the advocacy of our male counterparts where does that play a role and and how do you really engage the men you know this is such a good question because I get asked this on a regular basis by all my male friends as you can you know what are you doing just focusing on the women and my answer is there are a couple ways we do it oftentimes spouses or children of our champions will want to get engaged in fact I just the other day had a call with our newest board member who's a male which we're very excited about um so so we need allies as as does any organization trying to make change right we are a change agent that's what we're trying to do and we need everybody on board um to understand that a there is a problem that is unique to women living with heart disease and b we all need to get on board in order to make that change because let me share with you one statistic that um 11% of cardiologists are women 11 okay so you have a one in 10 chance of having a cardiologist who's a woman in this country and yet statistically whether you are a man or a woman you have better health outcomes if your cardiologist is a woman so not only do we have challenges sort of systemically but we have challenges just even in terms of the pool of cardiologists that you're likely to see and obviously those differences um are greater the further out you go from large metropolitan areas so you know there are challenges that that exists out there and in order for that to change we need men to recognize uh cardiology actually we need to get to a better a better ratio in order for us to have good outcomes for our entire population of patients that we see in cardiology we were talking to Dr. Martha Gulotti and and she was um who actually was my neighbor and so uh uh we were talking to her and I was intrigued to find out that in modern medicine we're finding out that there are differences between the female and the male body in not just like the size of the organs but how the organs work and so this is a big change in medical research and knowledge and I'm wondering is that part of where you see your organization going trying to say we need to get different science or more science or how do you bridge that knowledge gap to the human process? That is such an excellent question there's a couple of things one of the things that we have always advocated for is more women to participate in clinical trials right because in order for us to to get medicines that work in women we got to test them on women so that's one thing you know that is a big point of advocate address the second thing is we need to be lobbying not just governments but companies as an example there is a company that has a um a heart valve okay that obviously goes into the heart you know to replace a leaky valve but they only have one size now to your point women often have smaller hearts so are they saying that the the female market isn't worth producing a slightly smaller version of that heart valve for right so that's another point of advocacy right not just government but also in the private sector we really need to be advocating um and the the the last thing um is just this idea that technology uh there is there's huge opportunity in looking at cardiovascular disease in women in the femtech world okay that's a very exciting field yeah new technologies and innovations being great let me stop you use the phrase femtech yeah i've never heard of that i love it yes so that's a whole particular area of um startup biotechnology startups that are of companies that are specifically geared towards meeting the needs meeting the health needs of women now here's the catch the majority of those new startups and new products and new services being offered over 90 percent are dealing with women's menstruation maternal maternal journey right maternal health um or um everything having to do essentially with being a woman right except so so the the portion of of those femtech companies that exist it might be something like two percent are dealing with cardiovascular disease so again you know even among women because a lot of these startups are women led which is great but even then i can think of i can count them on one hand a number of new new startups that are trying to address cardiovascular disease in women so it is it is not just you know i don't want to i don't want to say it's the general public that's not aware you know but cardiology as a field is behind right and addressing women with heart disease medicine as a you know it the general sort of training that medical students get is behind um because primary care docs er docs they also need to be able to recognize the uniqueness of the experience of heart disease in women so you know it goes on down the line you know there is not a perceived need out there where there is a clear need um and and so you know a lot of what we do is try to shine that light because again women you know not only do they have smaller hearts not only do they experience heart disease differently but the symptoms of a heart attack in women don't look like your hollywood heart attack right so the differences are so stark to me that it is it is almost criminal that we are not talking about it more um that we assume that you know all heart attacks are the same men and women experience them you know in the same way um and and which is why once you know if a woman has a heart attack and a man has a heart attack the woman is much more likely to have a second heart attack 12 months later because again she's sort of being forced into a system that sort of treats heart heart attacks and heart disease and kind of like a one-size-fits-all way when really they need there needs to be specialized sort of specialized attention in terms of women and heart disease i'm thinking of what a great wonderful career opportunity for so many of our young women leaders that are interested in medicine interested in this and i'm thinking there there probably has to be somewhere and if anyone knows that it would be you salina and your team like somewhere a support system to help you know um i don't know attract and and bring in um these female doctors and i think that's such a fantastic opportunity you know i'm i'm very grateful i live in a metropolitan community it's it's very large um and you know yet i was raised in very rural community where it was literally i kid you not the doctor that my parents see is the child of their previous doctor right so it's like a generational kind of pass down of the family clinic and you know it's like they have a hard time going to to see this doctor because he's younger than i am and and they remember him in diapers so that's what our rural community is really you know faced with um with their caregivers as many of us you know around the nation do have this access to more of a metropolitan community uh i know if i ever need to seek out a cardiologist you bet your bottom dollar it's going to be a female based off of today's conversation statistically it helps yeah i'm mesmerized by this conversation and i i'm curious you know we we don't have much longer um but i would like for you to share with us salina what are those core common symptoms for women sure so um you know i'm not saying that women don't experience the chest pain and the shooting of pain down the left arm that you might hear more conventionally that also happens but other symptoms that are less um known less well known but still are signs of heart heart attack i was like a sudden and deep fatigue like fatigue like you you you know had have not experienced before there are women who've had heart attacks who've not had chest pain so you know that fatigue that is not that just feels like not recognizable that is that is a you know a serious symptom um the the shortness of breath that is also obviously another serious symptom but you know it really comes down to it's it's critical for women to know their bodies so that they know when something's just not right and that's that is actually another very common experience that i've heard women women go through which are they'll say i got to tell you salina i just had a feeling it's like a do like a like a doomsday feeling i just had a feeling and that feeling it turned out was a symptom that they were having a heart attack um and i want to also say this if you know something's wrong do not let yourself be dismissed from any of there have been far too many stories um of a woman who was having a heart attack in front of the ER doc the ER doc sent her home and and it turns out she was she was literally having a heart attack in front of him you know it is and i will i will quote one of our doctors um who's on our scientific advisory council she says it is better to be embarrassed than to be dead i love it that is a great way to end the episode it absolutely and you know what i'm thinking too with uh the pandemic and i've i've been referring to pandemics plural because there's so much going on in our world right now is that you know i know i myself i'm thinking like oh i have a lot of anxiety there's a lot of stress there's a lot of pressure and you're right to not dismiss some of these feelings because it could be a symptom of a greater issue a greater challenge and to not dismiss this so salina gore thank you so very much uh ceo women heart i am so appreciative for all that you do to advocate educate and inform our community all of our community members and uh so grateful to to have you on today's episode to share with us about women heart and the good work that you are doing around the nation so thank you thank you too hey i'm jillia patrick i've been joined today by my co-host jarrett ransom again we want to thank all of our sponsors who've been with us um through this journey coming on now almost two years so uh we are super appreciative of all of your support wow jarrett this has been a great great episode um i feel like maybe it's been quasi non-profit show talking about the non-profit and in quasi kind of like helping our viewers absolutely we've never done that before you know that in that way like public service work yeah so necessary absolutely well hey everybody as we end every episode we want to remind you to stay well so you can do well we'll see you back here tomorrow thank you salina