Keep A Breast Founder, Shaney Jo Darden, Is Revolutionizing Breast Cancer Awareness
Prepare to be inspired by this captivating conversation with Shaney Jo Darden, the visionary behind the Keep A Breast Foundation. In this interview, Shaney Jo shares her deeply personal connection to breast cancer, revealing how it all began with a heartfelt mission to help just one person. But what started as a small initiative within the action sports community has blossomed into a global force for breast health education, prevention, and early detection. Join this compelling discussion covering the recent shifts in mammogram guidelines, and learn why being your own health advocate is more vital than ever.
Amy Cohen Epstein:
I am so excited and very much looking forward to talking to you today, Shaney Jo, and to talk about Keep A Breast Foundation. Let's just jump right into it. Tell me how you started this, why you started it, and where it is now?
Shaney Jo Darden:
Well, Keep A Breast has been around for 23 years. It's quite a long time. And I started the organization really just to help one person. I had a friend who was diagnosed with breast cancer, and she was in her late 20s at the time... And it was one of those things like back then we didn't have GoFundMe, we didn't even have Instagram or Facebook, none of that stuff existed. So, there was no way to raise money for her without getting out there and actually doing something the old-school way.
I was part of a community creating art exhibitions and art shows, so I decided, "Well, let's do what I know how to do, which is making an art show." I started plastering all my friends' breasts with plaster and creating these three-dimensional sculptures. I had all the artists that I knew paint them. We had an exhibition, raised money, and that was it. It was really just meant to be a one-time event, Keep A Breast to help one person. And now we're here still 23 years later doing grassroots education about cancer prevention all around the world.
Amy Cohen Epstein:
Okay, so there's so much to even just dive into right there. Our foundations are actually very much alike in many fundamental ways. This is the 25-year anniversary of the Lynne Cohen Foundation, and 23 years for Keep A Breast.
Shaney Jo Darden:
Congratulations.
Amy Cohen Epstein:
Yeah, so good. It's amazing. And there's one of the incredible oncologists, breast oncologists that we work with actually at NYU in New York. She said this to me so many times over the last 25 years that it's ingrained into my head. She said it after five years, 10 years, 15, 20, and then just again a few months ago. But she says to me, "It's not such a big deal to start something." Lots of people start things like foundations when tragedy strikes. Especially those with means or with the ability to do something that has a talent or know how to get it going. And there are people like us who just know how to do it. But what is extraordinary is the fact that we've kept it going. Because most people move on with their life. It's true.
Shaney Jo Darden:
It's true.
Amy Cohen Epstein:
Other things come up, and your life moves and grooves and shakes in different directions, but to stick with it and then to grow in the way that we both have over the last two and a half nearly decades is really significant and amazing. So yeah, I want to talk about that. First of all, to back up a second on the art side of it, I think is incredible. And I don't know if you knew this, but my mom's really, her whole life was steeped in the art community. She was an art history major in college. She was an art docent for many years at MOCA and MoMA in Los Angeles. She used to take us to museums when we were young with a pad of paper and a pencil or pen, and we had to write notes. I mean, that was a huge part of our life. She owned a gallery for the last, I think 15 years of her life, which was a huge deal and really phenomenal. She was really tight with the California contemporary artist community, so there's just a lot of overlap between us.
Tell me how you've kept this going for 23 years because I know how significant that is, and kept it fresh. And you started when I started, which was there was none of this. There were no podcasts, there was no Instagram, and there was basically no websites and internet.
Shaney Jo Darden:
No.
Amy Cohen Epstein:
So, it's a really different game now. We've had to grow and really change over the years. Just share with me the process that you've gone through.
Shaney Jo Darden:
I love that story about your mom. Thanks for sharing that with me. And I also grew up around a lot of art and appreciating art. My dad collected Native American artwork and he's native. I always had this real appreciation of art and fashion, and I always knew when I grew up, I wanted to be a fashion designer. And so that was my career. I worked for many years designing clothing in the skateboarding industry.
Amy Cohen Epstein:
Oh, wow.
We started Keep a Breast like a skateboard company or like we were a band on tour. There was nothing traditional about it.
Shaney Jo Darden:
And so when I started Keep A Breast, it was within that community. All the artists that we originally worked with were artists from skateboarding, surfing, from snowboarding. And so it was really that community getting together to show support for someone in their own community. And so at Keep A Breast, our mantra is art, education, prevention, and action. And it has always been that since day one. We started Keep a Breast like a skateboard company or like, we were a band on tour. There was nothing traditional about it. And I didn't know how to start a nonprofit, so I just learned everything along the way, how it goes. From day one, personally, I didn't understand the concept of a cure.
I couldn't wrap my head around, "Well, there's no cure for chicken pox. How is there a cure for breast cancer?" And I was young at the time and I was like, well, no one's talking to me about this. No one's talking to me about my breast health. No one taught me how to do a self-check. No one told me about the chemicals in beauty products and cleaning products and food and all these things. My mom was a hippie and she never even talked to me about this stuff. I was like, well, I have a core group of friends that I know I can educate and let's just start there. And that core group of people within the action sports industry grew. Keep A Breast was invited on the Vans Warped Tour, and we traveled all over the country every summer for 20 years, educating young people how to do their self-check, how to learn about non-toxic deodorant, cleaning products, hair dyes, all these things.
We've just been really lucky to have the support from our core community and we're still the same today. Yes, we change. Yes, we evolve. Yes, we have new programs. Things have happened over the years, but Keep A Breast is still the same organization as it was when we started it 23 years ago. I still make the breast casts. We're having an exhibition in San Diego this year. I'm working on an exhibition in Mexico City next year. Yeah, it's just sticking true to what you believe in, and surrounding yourself with a community of other like-minded nonprofits, organizations, and brands that support your message. I mean, there's a lot of organizations out there that don't believe in prevention, don't believe in early detection that flat out tell me, oh, we won't work with you. You're focusing on young people in early detection. So you just stay true to your heart. That's how you can keep doing something for so long.
Amy Cohen Epstein:
100%. We just had a fundraiser a couple of weeks ago and I was talking and I said those exact words that the only way that I've been able to keep doing this, that we've been able to keep doing this is by always staying true to our mission. And always staying true to our fundamental values and never compromising the integrity of the foundation.
Shaney Jo Darden:
Exactly.
Amy Cohen Epstein:
I think there's something really innocent and sweet and amazing about the way that you started this foundation, which was very similar to how I did, which is just learning and just doing it. Because I feel like that's how most people grow really great businesses, nonprofits, for-profits, whatever. You just dive in and do it.
And if you have a really strong mission and if you had a really strong cause and reason for what got you motivated in the first place, then I think you're golden. And you just sort of keep moving and going along from there. I love that the community that you've always been around in this skateboarding, surfing, community, snowboarding. That's actually a huge part of my own family's life. My middle son in particular is a skateboarder, surfer, and snowboarder. And so I know that community pretty well, and it's such a dynamic, I guess really grassroots and just go get it done group of people. It makes a lot of sense. And I see how the foundation that you've created has been able to keep moving along in the right direction. Tell me about how you're so international and how you have such an incredible presence literally all over the world. I mean, that's really rare and unique.
Shaney Jo Darden:
We became international really early on because of surfing. One of the first brands that we worked with really from day one was ROXY. And many of the ROXY writers, Lisa Andersen, Megan Abubo, many of those girls at that time all had family members who were going through breast cancer. And so we just started working with ROXY, doing the breast cast exhibitions. We would go to be Ritz every year. They would take us to Hawaii, and many beautiful places around the world doing these exhibitions. And still today we work with ROXY. They've been our longest partner who took us internationally and their home base being in France led us to starting Keep A Breast Europe. Because we worked with them so much and had so much support from their community, we started Keep A Breast Europe based in France. We have a team there doing great work. And it's exciting to just see the numbers actually, because I'm sure we'll talk about the Keep A Breast app.
You can really see around the world the actual numbers of your impact. And it's hard sometimes to show impact when you are based on education.
Amy Cohen Epstein:
Yeah, definitely. And it's amazing because I think when I was in high school, it was just, even middle school, it was the tail end of having those placards on the back of the bathroom stall where they would show how to give yourself a self-breast exam.
Shaney Jo Darden:
Really?
Amy Cohen Epstein:
Yeah, there were a few of them. I grew up in LA so if I'd go to UCLA to hang out or go to the library, you would see them, not a lot of them, but they would be there. And then they all disappeared.
Shaney Jo Darden:
Yeah, I never saw that.
Amy Cohen Epstein:
And they existed, and then they all went away. There was that big push about false positives or false negatives. So they were encouraging girls. I don't think they were encouraging girls not to do it, but they were not encouraging it at all, which I don't agree with, obviously.
Shaney Jo Darden:
They.
Amy Cohen Epstein:
Yeah, the they.
Shaney Jo Darden:
Thanks, they.
Amy Cohen Epstein:
They are a bunch of old men sitting around a table. The same ones who've now decided that we should go earlier for our mammograms, but we'll talk about that. I think there's this sense that you and I have been promoting preventive care and wellness in the greater sense of the word before it was a thing before it was cool. It is so important because the word cure doesn't really exist in this world. It doesn't exist in the world of, I mean, my world is breast and ovarian cancer. There's no cure. Even if you have cancer and you're cured, you're still for the rest of your life on high alert. Even if you're told you don't need to be, you are. And if you have breast cancer, you're immediately put at high risk for other cancers. The idea of prevention is, it's so obvious, it's the way to tackle this.
Shaney Jo Darden:
And even for survivors.
Amy Cohen Epstein:
Of course, sometimes even more so. I mean, the number of women I've met over the years who have said to me usually about their moms, "Oh my God, my mom had breast cancer." And she beat it and won and five years later was diagnosed with ovarian cancer and died within six to nine months. I mean, that's been a conversation I've had dozens of times or vice versa, ovarian and then breast, because you sort of move on from it, which I can understand. It's a grueling, horrible process. And then you don't want to think about any of the other parts of your body. So preventive care is so essential starting when they're young and getting to healthy women. So that's always been a real tough thing for us is we have preventive care clinics for women who are potentially at increased risk for breast-ovarian cancer and give them access to the highest quality of preventive care with breast oncologists, gynecologic oncologists, genetic counselors, genetic testing, a whole lifestyle psychosocial component.
But you're talking about healthy women. So, that's been a really tricky thing to do. What's been, I don't know, your secret or how you've tackled that and getting preventive care messaging out to young healthy women to take control of their health and wellness, which is sort of my creed.
Shaney Jo Darden:
Yeah. I mean, we've tackled it in a way that, back to being a band or a skateboard brand, we made it cool. So we created educational materials that were cool looking, that were designed by amazing designers, not looking like something a nurse is going to give you or something scary or something creepy. We created the I Love Boobies bracelets and the campaign, and we had surfers, rock stars all wearing this stuff. And so making it less taboo, making it a conversation piece. You see someone in the grocery store or someone wearing an I love Boobies bracelet, and you're like, "Hey, what is that?" It's a way to talk about something that is scary that we don't normally talk about, but it's also a way for someone to show their support for someone going through it.
And so if you see someone, they'll say, oh, well, I'm wearing this for my mom or for my aunt. And they'll start a conversation that they wouldn't normally be having at Home Depot in a grocery store line in the most random places. And we go to places where young people are. And as opposed to having a stationary place like a clinic where people come to us, we go to surf contests, we have our little booth and we're there, we're at Malibu every summer for the Malibu Classic. We go on music festivals, we go to skate events. So we go where people are, where they're having fun, where they're having a great day, and we're there available for people just to share their experience. Maybe they're going through something really hard and they want to talk to someone about it that looks like them, or they want to just come up and learn.
And a lot of times it's a young couple or someone with their mom, and then maybe they'll come back the next year and they'll see us and they'll be like, "Hey, I took your information. I brought it home. And luckily my mom had found a lump. It wasn't anything, but because of this, we wouldn't be having these conversations. So I think we're really good at starting conversations in places that you wouldn't normally expect.
Amy Cohen Epstein:
In New York, we have this incredible mobile bus that goes through different communities and spends a lot of time in lower-income communities too. And gals get out and jump out and are talking about breast cancer awareness, ovarian cancer awareness, and it has a mobile mammogram screening machine in it. I mean, it's pretty amazing, but it's the only way to do it. And really to get people knowledgeable about their own bodies, women are comfortable with their bodies and talking about it.
Shaney Jo Darden:
Exactly.
Amy Cohen Epstein:
Tell me about your work in the BIPOC community?
Shaney Jo Darden:
Well, we started an awesome program in 2020. It was our 20th anniversary, and we were doing a big breast cast exhibition in Nashville, and it was huge. It was 87, 88 pieces. And so-
Amy Cohen Epstein:
Are you still doing all of them?
Shaney Jo Darden:
Yes, I make all the casts, except for the ones in Europe. I have people making them.
Amy Cohen Epstein:
But then different artists paint them?
Shaney Jo Darden:
Different artists paint them. I make them all, for the Nashville Show. It took three years of preparation. Because I would travel to Nashville and each time make a set of casts and then send them out to the artists, it takes quite a long time. And then the artists all volunteer, so they need time to paint and obviously make their creations beautiful. And it was like COVID had happened, it was 2020, it was our 20th anniversary, had this, all these huge things and we're like, "What are we going to do?" We ended up having an exhibition space that was donated to us in East Nashville, and we were able to have it open during COVID with all the precautions and limited people in mass and all that kind of stuff. But usually, whenever we go to different cities, we've had these exhibitions in Paris, Tokyo, like many places around the world, we always try to partner with a local organization to leave a lasting impact
And not just show up, do our thing, and leave. How can we create some type of energy community there or just give money? How can we be a part of it? And so during that time, it was COVID, it was the height of everything going on with Black Lives Matter, and there were a lot of organizations in that area that were specifically dedicated to black women and breast cancer. We started reaching out to, see if we can give a percentage of what we sell of the casts from the auction to a local organization. And I think many of those organizations were maybe really overwhelmed at that time, understandably. And no one was getting back to us.
I was like, "Okay, well, I'm just going to start my own thing as usual, you just take care of it yourself." And so we started a program called the Give Back Grant program, which is specifically for women of color who are breast cancer survivors, and we give them $500 cash grants. It's just easy. It's like they can spend the money on rent, their own business, self-care, really whatever they want. No red tape, make it easy. And it's just supposed to be a small grant to give a little bit of joy, a little bit of love, a little bit of like, "Hey, we support you." We're going into our fourth grant season right now. The applications open on August 1st. August 1st the cycle opens. And last year we received more than 500 applications. The first year in Nashville we gave 16 women grants. The following year we were able to give 240.
Amy Cohen Epstein:
Wow.
Shaney Jo Darden:
And then last year we were able to give more than 400.
Amy Cohen Epstein:
Wow.
Shaney Jo Darden:
So to date in the last couple of years we've given away 747 grants, more than 300 thousand dollars. It's a lot. And it's exciting. And the feedback that we're getting is just that it's helpful, people feel seen. And it's helping us create a community around women of color to provide more support, more education, and more resources through Keep A Breast. We have different education sections on our website, specifically for the LGBTQ community, women of color, and male breast cancer. Because as you know, it affects different people and different communities differently. I know on one of your recent podcasts I was listening about the Jewish community, how it affects them differently as well. So, breast cancer is not this one disease.
Amy Cohen Epstein:
No, it's not equal.
Shaney Jo Darden:
It's not equal racially, in many different ways. We're trying to help in that community the best way we can.
Amy Cohen Epstein:
And to me, it's also a lot of people talk about that and they say, "Well, a lot of it's access to care and access to high-quality healthcare," which it absolutely is. It's also a comfort level. It's a comfortability with demanding the best care that you can get, and not ignoring things, and speaking up for yourself. Talking to your family members about diseases they might know about that exists within your family line. How do you deal with that? And then getting that information that can help them figure out and determine what they need to do to stay healthy. And that's really different in different communities. And breaking down those barriers is really hard and it can be really hard, so getting educational materials in their hands is lifesaving.
Shaney Jo Darden:
And that's why we have our app.
Amy Cohen Epstein:
Which is amazing.
Shaney Jo Darden:
With the app it's like, I love it because that's what it is, is it's breast health care for all, for everyone. Everyone has a phone now, even in the places we go in Mexico, in tiny little villages they have cell phones. With our app you can get education, information, and support in your home in the privacy of your own bedroom or bathroom or wherever you are. And so it's really providing something that is needed, which is access to everyone. The more support we can get from partners and organizations to share our app with their audience, the more we can get it out there and the more people we can help.
Amy Cohen Epstein:
How did you come up with the name, Keep A Breast? It's so good.
Shaney Jo Darden:
I didn't come up with it.
Amy Cohen Epstein:
Was it your friend who had breast cancer?
Shaney Jo Darden:
No, it was a friend of mine named Howard Brown, actually. He was working with ESPN. And so way back in the day when we first started Keep A Breast the art organization that I had with my friend Mona, who's the co-founder of Keep A Breast, it was called Motar. And so Howard, because it was an event, Howard did all the artwork and everything for us, and he's like, "Let's call it Keep A Breast." And we loved it as a play on words. It's like, "Keep A Breast of health, and education." It was a way that for us just was smart and cool and ...
Amy Cohen Epstein:
It's awesome, yeah.
Shaney Jo Darden:
So, go Howard Brown.
Amy Cohen Epstein:
Yeah, seriously. Give credit where credit is due. Good karma. And then I want to hear about the work you're doing in Africa.
Shaney Jo Darden:
It's small. We have a small team there. And so Keep A Breast the way that we're organized is we're set up in the U.S. as a nonprofit, and we're also set up in Europe and France as a nonprofit. And our global CEO, Lauren is French. And so we each have these passion projects. And so her passion country is Africa, and she's traveled there many times in her life as a filmmaker and documentary producer and photographer and has done a lot of work there. And so she ended up getting contacted by some different organizations there to bring our work. We really just have a small little team of two people in the Democratic Republic of Congo, and they have our education materials and they're like street style. They just go out to farmer's markets, schools, and churches and educate young women, the women on the streets how to do their self-check.
And it's super simple and it's super amazing and it has a high impact. Same thing with a lot of the work we do in Mexico. Mexico is my passion country. Growing up in San Diego, so close to Mexico, I spent so much time there my whole life. And so we each have these projects that are part of Keep A Breast that are our personal passions, but then they grow into making an impact in education.
And so our app is available in Spanish, French and English.
Amy Cohen Epstein:
And the longer I've talked with you, the more sure I am I want your opinion of the recent guideline changes in mammograms for women and what your initial reaction was.
Shaney Jo Darden:
I mean, I think yes, it's great that it's in the news that they're recommending women younger to get their mammograms. Of course, because the other recommendations were over 50.
Amy Cohen Epstein:
It's insane.
Shaney Jo Darden:
It's like I'm 50, so come on. It's insane.
Amy Cohen Epstein:
There's no baseline.
Shaney Jo Darden:
And personally, the recommendations, the studies, all these things are so challenging because a lot of us base our work on statistics. We base what we do on research and facts. And so we have to always question nowadays who funded those studies? Where this information is coming from, are the results bias in any way? And so with all of that, it just goes back to doing what I know that I can make a difference. I know I can educate young people on prevention and early detection and I know it works and I know it makes a difference. And so I put my energy and focus there. And obviously, mammography is a great tool. Thermography is a great tool that people don't talk about, that isn't mainstream, and that I believe is really important. And knowing your family history, getting to baseline, all those things, it's important. Young women get breast cancer. And that was not something people talked about when we started our organizations. And it was-
Amy Cohen Epstein:
No, definitely not.
Shaney Jo Darden:
... super frustrating, because there was nothing for young women. And they were getting turned away. I mean, we both know many people who were diagnosed young and were turned away from their doctors many, many, many times. So being your own health advocate, the best way you're going to do that is with knowledge.
Amy Cohen Epstein:
100%. You have to be your own best advocate. You got to put that mask on first. No one's going to do it for you. And you have to take your body seriously. You have to listen to yourself. You have to feel yourself, and you have to know what your normal is. That's my sort of base. What I always say is, that you have to know your normal, and then when you're outside your normal, you have to do something about it. You can't live your life in the sphere of crazy, but you have to know what's normal and know that your normal changes. Our normal at 12, 18 was very different pre and post-getting our periods to now. My normal at 47-
Shaney Jo Darden:
It's different.
Amy Cohen Epstein:
... the way my body ticks and moves is not the same, but I have to know it so that when I'm outside that normalcy, I can know something's wrong and I might like, the beacon can go up and I can do something about it. I did a lunch and learn a couple of months ago. In wrapping up, I said, "Everybody in here should have a gynecologist." And it was a group of women in their between 23 and 36. And I said, "Everyone in here should have a gynecologist and have seen that gynecologist, man or woman, by now." And so many women in that room had never seen a gynecologist before.
Shaney Jo Darden:
Wow.
Amy Cohen Epstein:
And I said, "If you don't have one, please email me and I will help you find one. And even if that means it's not your special doctor that you see all the time, although that's what I would recommend. Go to a clinic, whatever it is, I mean, that is part of being a woman and go to a doctor who specializes in our womanly parts. Because just getting a pap smear is not enough. And if you don't know how to give a self-breast exam, at least you're seeing a doctor who's going to do it for you
I mean, women came up to me and they're like, "I'm so afraid to see a gynecologist." Like, "Why?" "I don't know, it's so scary. What are they going to do?"
Shaney Jo Darden:
"It's my life."
Amy Cohen Epstein:
It's like getting your teeth cleaned. You got to do it.
Shaney Jo Darden:
Got to do it.
Amy Cohen Epstein:
It sucks, and you might have plaque, but you got to deal with it...
This interview has been edited for length and clarity