“Sharsheret: Supporting Women with Cancer” – with Elana Silber
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Dr. Fox: Welcome to today’s episode of “Healthful Women,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB/GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Okay, we’re here with Elana Silber, who is the CEO of Sharsheret, which is a terrific organization that we’re gonna learn a lot about today. And Sharsheret, of course, has been our sponsor, for our three week long podcast miniseries on cancer in women, and Elana thank you so much for agreeing to come on the “Healthful Woman,” podcast. I really appreciate it.
Elana: Thank you so much for hosting Sharsheret and hosting me. And I really appreciate the opportunity to share important information with your listeners.
Dr. Fox: That’s great. And as we were talking about offline, you’re not only the CEO of Sharsheret, you’re in the family for the MFM Associates Family Link, right?
Elana: So that’s my fun fact. Thanks to you and your incredible team, I am very blessed to have four grandchildren that were delivered at your practice. So thank you, two boys and two girls, and my daughters are raving about their medical team and the care that they’ve got in. And as a grandparent, I get to enjoy it in a different way than I did when I had my own kids years ago.
Dr. Fox: So interesting, because we were talking and when you mentioned that your three daughters go here, I was like, “Huh, what, what? I was like, I didn’t believe it. Because we don’t always know who their grandparents are. But it’s amazing. As I said, you have wonderful daughters. We love having them in our practice. And if they happen to be listening to you, they should be very proud of you as well.
Elana: Thank you. I appreciate that. And really appreciate it, and not only my own girls, but a whole circle of their friends are also very grateful to you and your practice for bringing these wonderful children to the world.
Dr. Fox: Thank you so much. I appreciate it. So tell us a little bit about yourself. Who is Elana Silber? Where are you from? How’d you get into Sharsheret, into this line of work in general?
Elana: The natural question that people always ask me as the CEO of a National Breast Cancer and Ovarian Cancer Organization is what’s my connection? Generally, advocacy organizations are run by people who’ve been directly affected. And the truth is that every single one of us is directly affected by breast cancer, or ovarian cancer. We know somebody out there, either a relative, a friend, a colleague who’s had breast cancer, or who is at genetic risk. So I personally have not had breast cancer. But about 18 years ago, I was living in a small community where I still live here in Northern New Jersey, there was a young woman coming to speak about an organization that she was starting. She was starting Sharsheret. She was a young Jewish mom, who was a rising attorney. She had clerked for Supreme Court Justice Ruth Bader Ginsburg, and she was 28 years old, had 2 young children. And she was diagnosed with breast cancer. And at the time, she had a good medical team in place, but she was looking for support as a young woman, someone who could speak with her, who would help guide her through balancing career and cancer, raising a young family, intimacy with her partner, and really managing all that was going on. And there were plenty of offers for her to speak with older women, aunts, and grandparents, but really no other young woman. And fortunately, or unfortunately, she was introduced to another young mom who carried her through those harrowing days before surgery, through treatment. And she looked at this other woman and said, “You know you’ve got me through this, but no one else from an organizational perspective was able to do this. Let’s start our own organization. And if we could help five women a year, that would be a success.”
So they started Sharsheret, which is Hebrew for the word chain, and they started out connected. And that’s how the name came about because these two women were connected like a chain and supporting each other. That year, they started this was about 2001. And their goal was for five women. And now fast forward, we’ve supported over 16,000 women through this support network and this national organization. So I actually heard this story from the founder, her name was Rochelle Shoretz, in my local community, and as a younger woman at the time, I felt compelled to get involved and I started as a volunteer. And then Rochelle looked at me and said, “The women are calling and we wanna develop programs.” I actually have an MBA in healthcare that I got when I was working at Mount Sinai Hospital in more of a support services role, not in a medical role. So I have an MBA in healthcare and a strong tie in the community. And I decided to work there and I worked with Rochelle. And again, fast forward, 19 years later, we now have 35 people working for Sharsheret and 5 offices in New York, New Jersey, Illinois, Florida, and California. And what we’re doing now is we provide this one-on-one emotional support, mental health counseling, financial subsidies, and community education.
Dr. Fox: When you’re talking about Rochelle… I met Rochelle. I’m actually friends with her sister, and that was sort of my first introduction because her sister and I are contemporaries. You know, we went to camp together. I’ve known her for a long time. But I was on a panel in Williamsburg, a panel for women’s health, and it was 500 or 1000 Hasidic women, and Rochelle was there to talk about breast cancer. And I was there to talk about pregnancy. And we spoke for a while. And she was unbelievable. Like what a force when she came into a room. And to think that someone at age…you know, in her 20s, who A, was young, but B, was going through breast cancer herself, had the wherewithal to start an organization is really unique, obviously.
Elana: Yeah. And I think that that’s the energy that still continues to today. And also the goal of the organization, it’s really to empower women to take control of a situation that seems so out of control and take the necessary steps to lead a healthier future and a healthier life going forward.
Dr. Fox: Yeah. And I wanted to ask you, I know that Rochelle sort of led the organization, either actually led it…there’s a couple of years where she wasn’t, but basically, she was running the organization until she passed away several years ago. And she was I guess, the executive director, it was called. And what was it like for you to step into the role…I know it was a different title, but to step into that role of running an organization, following in her footsteps? That must have been a very uncomfortable transition, I would say.
Elana: The challenge was that when she passed away, Rochelle was, in some respects, the poster child for breast cancer, and to lose the leader of an organization to an illness for which she started a support organization was emotionally challenging for a lot of the women and families we serve, and for the community at large. So I think my focus at the time was to reassure the community, that although Rochelle’s story ended with her passing, that’s not every woman’s story. And most women at Sharsheret are doing well. And breast cancer, when it’s caught in its earliest stages, as you know, it certainly can be treated, and it can even be cured. So I think we were focused not so much about my role in…about me, it was more the how do we serve the women to make sure that they are given the support they need, and not to lose the faith that things can be good for them, and that there are things that we’ve learned through Rochelle’s illness. This was a woman who was living for years with metastatic cancer. And I say living because she really lived life to the fullest. You know, metastatic cancer it’s almost…it’s a separate disease than early stage breast cancer. And it’s complicated. And there’s a lot of good that we learned from Rochelle’s experience because she was so vocal about her experience and shared it with so many on how to live side-by-side with cancer and how to live with metastatic breast cancer.
And as the medical community advances in treatments and ways to manage an illness, so it is a chronic illness, and it eventually will be terminal, it’s not today terminal. And that’s what she taught about living life and making the most of what you can while you’re living with this illness, and explain, and how to share that information with family and friends, so that they could interact with you in a “normal way.” I didn’t fill her shoes, that wasn’t my goal, but because I had been here for so many years, and really, it was almost like a startup, and I had learned so much, not only from Rochelle, but also from all the other women, we took that knowledge and that energy and that power, and we held it together, and Sharsheret is even stronger as we carry on her legacy.
Dr. Fox: I was sort of asking in two fronts on the one that you were discussing, which is to have an organization that’s meant to be supportive and uplifting, and to have the person who started the organization pass away. Obviously it’s very devastating from like a morale perspective, as you’re saying, but as you said, it’s not always there to support women who are not doing well, and most people do well. And also she was diagnosed 20 years ago. It’s a much different world now, fortunately, than it was 20 years ago in that regard. But also, was there a concern that maybe the organization itself would lose its momentum because she was, you know, the initial driving force, or were you confident that, you know, we had enough people and we already had enough momentum that it wouldn’t sort of fade?
Elana: There were those naysayers, and I saw some emails come across that said, “Oh, what do you think’s gonna happen to Sharsheret now?” And I was cautiously optimistic that I could do this, because we had known that she eventually was going to pass away from cancer. She was very clear. So we had been planning for the transition. And I guess in any kind of new… I changed the position itself. You know, the title has changed, the organization is in a very different place from where it was when she started it. And we also had a really strong team. There are a lot of staff members that have been there. Sharsheret is a great place to work. You know, we have…not only is it a meaningful experience, it’s also a very positive experience, so we have staff members who’ve been on staff 10 years, 12 years, 14 years with me, and so that team was able to be helpful, and we did it together. Everyone has their doubts, but thankful to my team and to the community that overall was very supportive of my taking on this position because it is a public position. And I mean, there are things also that I’ve been recognized… Like, for example, we work with the CDC. We help develop programs for young breast cancer survivors that serve as models for other groups. And I chair the Federal Advisory Committee on Breast Cancer in Young Women. So getting that position and having the opportunity to really work with the landscape of breast cancer support organizations across the country and across all demographics, my experience has let me do that successfully, so I did gain that kind of confidence as I was recognized externally for the work that we’re doing.
Dr. Fox: Yeah, and I think that also just speaks to the need for what you do. It’s just there are unfortunately, so many people who are going through a breast cancer diagnosis, or treatment, or living with it, or even if they had it in the past, so to speak, that they’re doing well, there’s so much that lingers in terms of whether it’s financially, emotionally, socially, and there isn’t really a place people can turn to other than you guys, or maybe some organizations like what you do for support. And I think also that need is gonna keep driving you because people want you to be there.
Elana: Yeah. And the truth is, we’ve always said that, but I think starting from March of this year, it became crystal clear how the need for Sharsheret is greater than ever
Dr. Fox: Yeah, let’s talk about that, for sure. That’s huge, like with Corona and social distancing, what’s it been like? And what have you learned from that?
Elana: So, the model of support that we’ve had has always been virtual. We knew about years ago that the women that we’re serving, where we call them young women, but these women are self-defining what young is, women who are active, women who are working, women who are dating, women who are in the community, so these are women in their 20s, 30s, 40s, 50s, 60s, I mean, we have women in their 60s who adopted children and are raising 8-year-old children, so they’re young, and they don’t have time to go to in-person support groups between managing their care and managing those other things that are going on in their lives. Sharsheret has always brought our services to you. And we have always personalized the support to you. So it’s not that Sharsheret has the programs and tries to fit you in. Our programs are tailored to meet your needs. And everything that we have done over the years has been accessible by phone, or by email, or online. I mean, now either through social media, women are connecting with us. So we have eight social workers and a genetic counselor, available online every day, all day, providing emotional support. We have a peer support network with over 16,000 women. So we’re matching women every day. And it didn’t matter to the outside world, our services never stopped, not for one minute. It’s been a change for us as a staff because we work together and we collaborate and we develop new programs and services for women based on sharing in person and we don’t have that, but the services to the women and the families that we serve and that’s caregivers, too, has always been delivered by phone, email, and regular mail. So that never stopped, not for a day.
You know, your support system is made up obviously of your medical team and your family and Sharsheret. And now we’re finding that women who had called their moms to come babysit for their kids while they were going in for surgery, their moms aren’t coming, and moms whose daughters were supposed to come help them, they can’t come. And Sharsheret has been serving as this virtual hand to hold to help women get…because I mean, we’ve had women who are going up for chemo, all by themselves. And we’re preparing things for them to listen to while they’re there. They can actually speak to a social worker while they’re sitting there. And we’re also helping women before cancer. So we saw at the hit of Corona, a lot of women who found out that they were BRCA positive, at increased genetic risk for breast cancer, hadn’t really put the wheels into motion on putting together their medical teams. But now that they were stuck home, under lockdown, we were getting calls, like, “Help me build my medical team. Who has to be on it? What am I gonna expect? Can I speak to another woman who chose this type of surgery, this type of reconstruction?” There are women who decided not to do reconstruction and wanna go flat and wanna consider those options. And we’re connecting them with other women. So Corona only highlighted the value of the work that we do. And we didn’t have to pivot in any way except we had to increase because the demand for both education and for information support is on the rise.
Dr. Fox: Well, do you think that was…that or also that people were becoming more comfortable with sort of that remote level of support, meaning prior to that, people might be like, “Well, I don’t know, what’s a phone call gonna do or a video session or an email?” But then in March everyone was like, “Oh, there’s like so much you can do,” and that we’re doing and maybe it also opened what you were doing to others who maybe wouldn’t have reached out in the first place.
Elana: Right on the mark. And the truth is the medical community, by accepting telehealth appointments, validates the work that we’re doing. That things can be done over the phone. So we thank you for that because previously it wasn’t like that. So you’re 100% right, it definitely is a different perspective. And we value so much the partnership that we have with the medical community, and the work that you do is so different than the work that we do. But putting it all together is really so helpful to the women from a holistic perspective as getting a whole range of services to help get them through what they’re facing.
Dr. Fox: I’m curious, because one of the things that was interesting at the time when the COVID was peeking in our northeast area was for the month of like, March, April, May, and even June, a lot of women or anybody, were not going to doctors, either because they themselves were afraid to go or because the doctors’ offices were completely closed, or they were only seeing emergent cases. And there was a lot of discussion about obviously the positive of the lockdown to avoid getting infections, particularly people who might be sick with cancer, but on the downside, there were people who weren’t getting chemotherapy, or were delaying surgery, or delaying their mammograms, or delaying their biopsies. Did you, just because you’re in that world, did you see a lot of that? Were you talking to women about that? How were you counseling them in that situation? That must have been very difficult to navigate.
Elana: That is huge. And it’s still absolutely a concern today. If you go on to Sharsheret’s Instagram, we’re on Instagram, @sharsheret1, one of the postings we did this week for Breast Cancer Awareness Month is don’t delay your doctor’s appointments. Now, if your area is open, trust your doctors, they’re making it safe. We are encouraging women to go to their doctor’s appointments. But the questions that you’re asking, where we were getting them by the droves, the phone’s ringing off the hook. So what we did was that we got up a webinar series with top oncologists and all…everyone from the medical team to speak directly to women. So we would set up these webinars with one or two days news, what’s the hot topic of the day, so COVID and cancer. Within 2 days, we did a webinar with like 800 people registered and they were able to ask their questions, “What if I’m on this chemotherapy now, and what happens if they said, now I only need five and I was supposed to have eight?” And well, we don’t give direct medical advice. We give them guidance on how to speak to their doctors, and what is the general understanding of what’s okay. And sometimes chemo therapies could be spread out and be safe and not put your life at risk.
And then there were some questions that you can ask that you can get things done even during lockdown. So that’s how from a social worker’s perspective, we can help them with that. But we even brought the medical community directly to the women so that they could ask this question, and then women also were supporting each other through these webinars because questions would be asked, like 20 of them had the same question. And there, we did have the top professional providing general information, not direct medical advice. We still encouraged women to check in with their health care professionals. But this alleviated fears, helped give them guidance, gave them the questions to ask, help them take the next step so that they wouldn’t put their lives at risk. But there is still an issue of people delaying screenings and other medical procedures.
So we are actively…we have a story on our blog, we’ve been posting on social media, and every social worker that speaks to women about this topic encourages them to call their doctors. If you have to start with a telehealth, you can do that. And medical offices are reassuring us, as I’m sure you are, that they’re taking the necessary precautions to keep the environments safe.
Dr. Fox: Yeah, I mean, absolutely. The medical offices are all doing that because all of us recognize the importance of what we’re doing. And for people to not come just because they’re afraid, okay, if it’s a completely elective or routine visit, fine, you know, push it off, but that’s not what we’re talking about here. We’re talking about visits that are necessary. When you say the medical community, you know, you don’t have doctors, like on staff in your organization. So how do you make that connection? Do you have specific people who are like on your, so to speak, Rolodex? For younger listeners out there, that’s a paper thing. You know, how do you do that? How does that work? Do you have doctors who want to come on, or do you have to like twist their arms to come and do this? What happens?
Elana: First of all, we have a medical advisory board that has doctors who affiliate with all the different affiliations that go along with breast cancer and ovarian cancer. So they are, like you said, on our speed dial. That is our Rolodex. And these are very well known, very well respected doctors. And in addition to that, we are partnering with medical centers. So even if a doctor is not on our board necessarily, on our medical board, we’re working with them. So we have formalized partnerships, like with Georgetown Lombardi Cancer Center, like with Cedars-Sinai in LA, Sylvester in Miami. And so we are…have these relationships. So any doctor that we reach out to, if they have the time, they are happy to come on and help women, and we make it very easy for them, and set it up for them. And the Zoom thing, you know, this is the culture that everyone’s used to, so technology has allowed us to really bring the women’s voices with the doctors’ guidance together. So that’s been good.
Dr. Fox: Most doctors are really happy to do that. It’s…especially if it’s easy. I mean, that’s one thing that you have drive six hours to some convention center, all right, fine, that’s like a full day. But to get on a, you know, a webinar or a podcast or whatever it is for half hour, for an hour, or even longer, doctors are really excited about this. You know, most of us who go into health care, there’s a reason we do it. And if there’s something that’s gonna be valuable to women, people are more than happy to take the time to explain it and answer their questions, particularly when things come up, like with COVID. And I would imagine you probably have more volunteers and the doctors and…than you even have opportunities for them to just speak and do these things.
Elana: Yeah, we do. And we’re grateful for that because unfortunately, we’re still dealing with this predicament and questions, and they’re evolving, and they’re on the cusp of what’s happening. The truth is, we also have been able to archive them. So all of these…all these virtual conferences, they’re on webinar, they’re all saved on our website, and they can be accessed for free. They can be… There are written transcripts of our videos. People can figure out…they can see what they wanna see. They don’t have to see everything. And it’s been tremendously helpful to have the experts on the line with us. And the medical community is busy right now, hopefully. I mean, I actually just had my mammogram today.
Dr. Fox: Good for you.
Elana: That it went well today. And I felt very safe. And I encourage everyone who has not gotten one within the last year or so who’s over 40 should definitely schedule your appointment. You know, I’m grateful. This was a good result for me today. And we are telling people to go to the doctor. Go call your doctor. Set up an appointment. So actually, we do evaluations after all these webinars. And the feedback from the women and the speakers are like, “This is tremendously valuable. Please do it again. You know, we appreciate it.” And then we find out what topics they wanna talk about. And that’s what we’re presenting.
Dr. Fox: That’s great. So, we’ve been talking sort of peripherally about the things you do, but I wanted to talk directly about all of the services you provide just so our listeners can understand the scope of what you’re doing because it’s quite vast. And you guys do a lot. And so I definitely wanted to go into that. We can start anywhere you want. You can just rattle them off, or I can just go into each topic about how you support women, what are the services you provide for women and their families.
Elana: So what I’ve learned over these years is like I’m talking on this podcast, people have a certain capacity of what they could remember. So I’m gonna keep it really tight so everyone really gets what we do. There are two buckets of areas. When you think about Sharsheret and you think about breast cancer, why are you going to Sharsheret? One is for one-on-one support. That means it’s individualized. It’s all about you and your family. That’s one thing. And the other thing is that we educate the broader community about their risk and the measures they can take to protect their health. So that we’re improving lives through this one-on-one support. And we are saving lives through educational outreach.
So when I talk about one-on-one support, this is through a multimodal way of support. We have a national peer support network where women who share similar experiences can be matched. And we have mental health professionals on staff, the social workers and genetic counselor. And we also provide financial subsidies for non-medical services that may not be covered completely by insurance, or even at all by insurance, that improve quality of life. So that’s the one-on-one support, peer support, mental health professional, and financial subsidies. And in the education, we’re out there. If you are on college campuses, we are a national philanthropy for AEPhi. So thousands of students across the country, I don’t know if they’re on campus now in real life or virtual, but if you go on…if they’re doing events that raise awareness…because we talk to these young adults, and we tell them like, “This not about your grandmother’s breast cancer, which is important too, but this is about you. And you as a young adult can do things today to protect your future.” And we are working with them. We raise awareness about the genetic risk and certainly in the Ashkenazi Jewish community, that 1 in 40 Jews of Ashkenazi descent carries a BRCA mutation, and that kids as young as 18 to 24 can speak to their family, about their family history and see if cancers run in their family.
And we know that this the BRCA, breast cancer gene, also increases the risk for prostate cancer, and male breast cancer, and melanoma, and pancreatic cancer. So this is not only about educating women, it’s about educating men and women about their risk. So this starts on college campuses and through the community and adults of all ages. And we educate about other genetic mutations that are running through families so that people have knowledge and that knowledge is power. And then they talk to their doctors. We know for a fact that we’ve saved lives. That people who come to these educational events are listening to podcasts like this, and then they talk to their doctor. And then they find out that something’s going on, and they can take care of it because it’s early. So that’s what we do, one-on-one support, and education and outreach.
Dr. Fox: Yeah, listen, obviously, I totally agree that all of these, you know, the one-on-one support, it’s so critical for women going through this or have questions or need support, or want support, or even if they don’t, it’s gonna be helpful, obviously. And then in the education, that is huge in terms of, you know, prevention and treatment and saving lives. You said you had…there was eight social workers and a genetic counselor. So how many people are they in touch with on a given day, month, year? I mean, you mentioned you have thousands and thousands.
Elana: So we’re having about 400 unique women a month.
Dr. Fox: Four hundred unique women a month. And that’s I mean, that’s a lot, right? And it’s also their families, right? It’s really the whole unit, because every person’s circle is different. And so it may not just be her, but let’s say she has to go through chemo or radiation or surgery, and she has kids, I mean, there’s a lot that has to be supported under that circumstance.
Elana: Yeah. So for example, young moms who are going through it, we have a program called Busy Box and we create a box of toys based on the ages of the children with appropriate toys that are not messy, and really good resources for the parents. And we mail that to a woman’s house. So when she is resting after treatment, or when she’s at the doctor, you can take out a toy, and it keeps the kids busy. And it’s been so well received. All the toys are donated, and they’re good quality. And then the resources in the packet are for the mom and the parents on resources that can help them, articles that are valuable. And we have social workers who will help them. How do they talk to their kids about the cancer journey? And different ages have different needs. And how do you manage their responses? And we’ve also expanded this program. So women who are doing prophylactic surgeries, who find out that they have a genetic mutation that increases their risk, how do they talk to their kids about that? And how do they explain the surgery in an age appropriate way? So that’s one of the examples, that we are sending these quality of life kits to women’s homes that have nice product, which is really nice to give to these kids and also helpful resources to guide the parents and provide parenting tips.
And everything is with a human being. Like, with this day and age of technology, we are focused on making sure that everybody speaks with a human being if they want to so that it’s not just, “Oh, you get this sent and you’re on your own.” We’re really here for you for the biggest questions and the smallest questions.
Dr. Fox: And in terms of the 400 unique women a month, where are they from, all over the world, all over the country? Where are they congregated?
Elana: So were U.S. based and we have these regional offices. So we tend to get the bulk of the women calling from the areas surrounding our physical structures. So for example, New York, New Jersey, Florida, California, and Illinois, but now we’re seeing it’s more regional. So we are…actually have callers from all 50 states. We are U.S. based but, you know, Canada is our next door neighbor, we have women calling from Canada. We’ve had women calling from Israel, women from Hong Kong, women from Switzerland. Generally, they’re coming from the U.S. We’ve had women from South Africa, Australia, U.S. Virgin Islands. They’re finding us in all these crazy places. And we always ask people, “Where did you find out about us?” You know, a lot of times it’s coming because somebody runs a race, and they put it on their Facebook. And I think you might be a Sharsheret athlete.
Dr. Fox: 2011 New York City marathon, I ran it. I have the pink shirt, the Sharsheret shirt. It was great.
Elana: Think about all the people that sponsored you. First of all, we’re so grateful for the funds, and also grateful for the outreach that you did, because every single person who gave a donation now knows about Sharsheret. So very often, we’ll hear someone who says, “Oh, my cousin who lives in Wisconsin came in from the New York City marathon, and I gave a donation. And I never thought I would need you but I’m calling you now.” So they’re calling from all 50 states.
Dr. Fox: Well, yeah, I never realized that…obviously, I knew that the races that you participate in are great fundraisers, but I totally never thought about the fact that they’re also really good to just raise awareness because it just increases your net by that many people in every photo and you have the…you know, people ask, “What are you running for? What do they do?” I never actually thought about that aspect of it but that must be huge in terms of your visibility.
Elana: It’s huge. But that’s also a Corona consequence, right? There’s no more racing. I mean, there’s virtual racing, but it’s just not the same. So we miss that. I mean, as much as our programs…so women who need Sharsheret has their support that they need, we are missing the opportunity to come together in person for races, for luncheons, for ways where we can… Women love to see women. You know, we match women…so for example, we had a woman in Miami, who was matched with a woman in New York to share experiences. And then we had an event and they actually met in person. And that kind of first time seeing each other in person, connecting, that we’re not gonna be able to have now for a while. So we’re doing our best to connect people through these virtual events. We had one in July called Midsummer Miracles. And we actually have a comedy show coming up November 16th, that these are virtual. They’re fundraisers, but it’s also women are coming on to the call, so we knew that these two women, different women, not the one from Miami and New York, but it’s different women from across the country, LA and New York, they were both watching the Sharsheret event in July, a virtual event, and they started texting each other…they hadn’t spoken in a while, and they started texting each other and they ended up talking about what was going on with them now that they didn’t think they needed each other. And because Sharsheret had this event, it brought them together. That’s a shame that we can’t do these in-person events for a while.
Dr. Fox: How does it work for most people who end up as a part of those women who are getting your services and suddenly…what happens, do they just like phone your main office and say, “Hey, I just got diagnosed,” or, “Hey, I’m about to get a biopsy, like, what do I do?” or do people call with specific questions, and then they sort of find out about the other services? Like what’s a typical entry for a woman or family into the Sharsheret world?
Elana: So the answer to the question is, yes, yes, yes. Yes, that’s how they… Everyone has a different story. But we had it set up that really women are calling at every stage. And a lot of times, it’s not the woman who makes the call. It’s a hard call to make when you’re diagnosed, or you think you might be diagnosed. And we have a lot of women who call even for that waiting period, right? When the doctor tells you they saw something, and they’re going for the biopsy, and they don’t get the results right away, who do they talk to? They’re not ready to tell their friends yet because it may be…it may not be anything to tell their friends. And they themselves haven’t really accepted what’s going on. And we don’t wanna them to start writing fiction. They don’t know the answer yet. So Sharsheret can step in, and help you through that waiting period. That’s a really hard time for a lot of women.
So women are reaching out either with a phone call at that point. A lot of times it can be a family, friend, or a partner, a spouse, a parent, a best friend, an adult child, so they can reach out. We also have live chat. So we know when this stuff is going on, people can’t sleep at night. So they can reach out. We have a counselor on staff at night. We have LA hours. So we’re open a lot. You can reach us at any time and someone will get back to you. So you can say, “Okay, I’ll speak to someone at 9:00 in the morning and go to sleep.” But every channel…on live chat we’re getting questions on Facebook and Instagram. Even LinkedIn, people are reaching us and asking questions. But sometimes we get people who wanna talk every single week and go through the whole thing with us. And sometimes people just want a couple of questions answered to get them going on their way, and we’re fine.
Our goal is to empower women to take these next steps and take control. And if that means that we have to be there every day, for a month, we will do that. And if that means it’s once a month, we’ll do that too. And our team is constantly checking up on them, I mean, three months later, six months later, nine months later. So from that initial phone call, you’re never a stranger, you’re already a friend.
Dr. Fox: And does it work that…like let’s say a family member calls and says, “Hey, my sister was just diagnosed. She seems like she’s having a rough time or she needs this. How can I help her?” How does that work? Is that something where you would reach out to the sister or you say, you know what, “The sister has to call us,” or how do you navigate that?
Elana: So we are very cognizant of privacy, and confidentiality. So even if… Like, I remember when I came to Sharsheret, I remember Rochelle and I, we were talking about like confidentiality, if people are gonna come over to you in the community and say, “Oh, thank you so much for helping my sister.” I could not say to that person, “Oh, yeah,” but I would say, “I’m glad your sister feels supported. But I don’t know if she called Sharsheret. And even if she did, I couldn’t tell you.” And even within my own family…so confidentiality, everything is under lock and key at Sharsheret. Nobody shares information. I don’t know the women who call Sharsheret unless they’re calling me directly. Everything is confidential. And when women wanna share their experience, that’s their decision. But at Sharsheret, no one will know it. So if someone, a family member calls and says, for example, like you said, “My sister isn’t doing well,” we will not reach out to that sister. We will say to you, “If you want, here’s my number, give it to your sister, or do an email introduction where your sister approves it, then we will get involved.” And we can give you everything to give your sister. So for example, if you tell us that your sister is going through surgery, and we have this amazing pillow of support that’s beautiful and helpful. And we could say to you like, “I’ll send it to you, and you can give it to your sister, but I will not put that sister’s name anywhere until she herself is ready to make that call.” At the end of the day, she is the boss, she decides what’s public, but we can still work… there are women, I guess, that maybe that never called us but we are helping the sister or the husband all the way.
We had a woman who was diagnosed with breast cancer whose mom called us and how we can help her. And she told us she was going for surgery and we told her, “Okay, this is what you need to do.” And the mother needed some help because this is her second child going through a cancer experience. So we said, “Okay, we’re gonna send you a pillow.” And the daughter had an interesting first name but a different last name, then her mom said. Then a couple of days later, we get a call from someone’s husband, “My wife is going for surgery and I need this kind of help. And can you help me and I need it by tomorrow?” We said, “Oh, she’s having surgery.” And then we said, “Okay,” and then we said, oh, maybe we’ll send her a pillow. And then we realized that he was talking about…
Dr. Fox: She got three pillows. Yeah.
Elana: It was the same woman. But we realized, like, we would not know that. Everybody had a different last name. But the point was that it’s so confidential, we don’t know. And we wouldn’t let the husband know that the mother called. And that’s the way it is. When the family’s ready to be public, that’s their decision, not ours.
Dr. Fox: Yeah. I mean, that makes a lot of sense. And if someone calls and they speak to a social worker, let’s say, do you guys internally do it that each woman is assigned one social worker, or is it like a team approach where you guys discuss cases and what can we do? How do you sort of navigate that, the sort of one-on-one individual with a specific social worker versus your whole team of professionals?
Elana: So we write down…we have a proprietary database that we’ve created that stores all this information that is password protected, and people can’t get into it. But generally women, as they develop a relationship with a social worker, can ask to speak to them again. But for example, sometimes women wanna know, you know, “I’m going tomorrow to my plastic surgeon, I just wanna know, a couple of questions.” But that person might be on vacation that day, or, I mean, we have someone on maternity leave every month, so sometimes, the social worker could be out…
Dr. Fox: That’s wonderful.
Elana: You know, that is great news. It’s a growing Sharsheret family. We have a lot of Sharsheret babies. So social workers can be out for a few months at a time. So we have all team members are able to keep up with different cases. And as a team, they do have weekly meetings where they discuss cases and help each other, discuss best practices, but without using names. But if a woman is in the system, and a social worker that she feels…that she used all the time, but we can get that information, and we can help her get to that doctor’s appointment with all the tools she needs.
Dr. Fox: Right, and I think one of the really interesting things about Sharsheret that I suspect a lot of our listeners don’t know, certainly the ones who have not heard about you before, but even the ones who know you very well, is even though Sharsheret, you know, it’s a Hebrew word, and it was started by a Jewish woman, a Jewish community, you’re not uniquely there for Jewish women. You’re there for all women.
Elana: Yeah, I mean, our focus is Jewish. So you will see Jewish on everything.
Dr. Fox: Okay.
Elana: We did a survey and 20% of the women who reach out to Sharsheret are not Jewish.
Elana: But we’re also finding, which is so interesting in this day and age, is that because of all of the ancestry types of kits that people are taking, and finding out, and one of the things that….like, for example, 23andme is an organization, a company that for entertainment purposes, you can find out all about your ancestry. And they happen to also ask about BRCA, about BRCA testing. So, we are finding out that women for the first time, who never knew they were Jewish, but because they have Ashkenazi Jewish blood, are calling Sharsheret because they know that we have an expertise in this area. So it’s the first time that we’re finding women who never even knew that they had any kind of Jewish connection are connecting to Sharsheret. But yes, we help every woman and man who reaches out to us for support. And our expertise is in breast and ovarian cancer. And we often get calls about other cancers where we offer them the support that we have that relates to breast and ovarian cancer, and if they wanna take advantage of it, terrific. And if it’s not, because it’s not so specific, we have partners in the cancer community where we can refer them to so they can get very specific support that they need for the cancer that they are living with.
Dr. Fox: Right and how do you support all your programming?
Elana: So Sharsheret’s fundraising model is we have a lot of individual donors from the community. So that’s one revenue stream. Another revenue stream is we have one government grant from the CDC that we have been getting for about eight years working on a cooperative agreement with the CDC. We also get support from pharmaceutical companies who are bringing drugs to market that target breast cancer, ovarian cancer and BRCA related diseases, and laboratories that are doing screening for cancer and genetic mutations that are related to breast and ovarian cancer. And we often serve as consultants, providing them with the patient perspective so that they can hear the patient’s voice and we represent that. So that’s funding. And then the last funding is family foundations. So we don’t really get so much institutional funding, but there are family foundations that are supporting Sharsheret. And our budget is $4.7 million.
Dr. Fox: Wow, that’s an impressive budget. That’s…I mean, that just indicates how much you’re doing.
Elana: Yeah, a lot of people, when you think about how many people Sharsheret touches in a year, we estimate based on the numbers of the people we actually have names for, we’re over 150,000, but we know there are times when we get calls from people and they say, “I just wanna thank you so much, you really helped me get through my cancer.” And I was like, I don’t know them. Their name is not…I have never heard of them. No one’s heard of them. Their names are not in our database, because they’re watching a video or they come to an event, or they don’t share their contact information. And that’s okay for us. Like, we love to hear that we were there for people. The worst thing is to hear from someone who says, “I wish I knew about you when I needed you most.” So we really want people to know who we are. So that ultimately, my goal is to ensure that everybody knows about Sharsheret should they ever need us.
Dr. Fox: Right, I mean, and finding you. As long as you know the word Sharsheret, they’re gonna find you because…I mean, Google, Instagram, Facebook, wherever it is, I mean, you’re the only ones that are Sharsheret with the bow, I mean, so it’s fortunately, you guys have a name that’s unique enough that all people do is type it in, and they’ll find you.
Elana: Yeah, it’s really hard to type it right. So most people type it wrong. So we put on our website, misspelled names of Sharsheret and it’s not because they don’t have good proofers. But we know that people spell it wrong. So you’ll see on some of our pages, it says, Sharsheret is spelled, Shersheret with an E and not with an A so that the misspelling is also on our website so people can find us. We’ve been working a lot on our SEO and making sure that different Google searches will bring our name up to the top so that people can find us and it’s easy.
Dr. Fox: Right. So I wanted to wrap up, I wanted to ask you, basically, three questions sort of on like an overview level, the first would be, there’s so much that I’m certain you’re proud of in regards to Sharsheret and your involvement with Sharsheret. But if you were to highlight something that you were either the most proud of, or one of the things you’re most proud of, in regards to what you’re doing at Sharsheret, what would that be? It could be a story, or it could be just a specific program that you started or it warms your heart, when you’re having a tough day at work, let’s say.
Elana: I think what we’re most proud of is the feedback we get from women and the stories we share. Everything is about stories. Every Wednesday, we bring together our staff from all over the country. Now it’s not so unique, because everybody does Zoom but even before COVID. And we start off every staff meeting with a story from our team of social workers, of a woman from where she was before she reached out to where she is today because of Sharsheret. Those are the stories that when I go out there, and I talk about Sharsheret…like I said, people aren’t gonna remember the exact details, but they’ll remember the stories of the women who started in the beginning feeling vulnerable, maybe even as a victim, and they come out after Sharsheret and wanna help others. And I think that that’s what I’m most proud about, this feeling that I came to Sharsheret in a view of how can I help women now? How can I help someone else?
So women who were…reached out to us for support, now sign up to be peer supporters, I think that that’s an unbelievable proud moment for us as an organization to provide that platform, which we know is part of the healing process where you can reach out beyond yourself, take your experience and help other women.
Dr. Fox: Wow, that’s amazing. And then the second thing is sort of looking to the future of your organization, in addition to just doing what you’re doing, maybe for more women, do you have any thoughts about areas that need to be addressed, or big needs in the communities that you see that maybe one day, you can help fill that void.
Elana: So one of the things that we started to do on a very small scale are these financial subsidies for non-medical services. I think that as this pandemic continues, I do believe that financial instability is going to become a big challenge and with health care. So I would like Sharsheret to be even more of an expert, when it comes to policy and advocacy, not that that’s our mission, not that we will do it, but we should understand it and be able to educate our women about that even more than we’re doing it now. So we’re actively looking for board members and others to come who can share that kind of expertise with the women that we serve, because I think that it’s gonna get difficult for people and the world that…it’s hard. So if we could have…raise more money to be able to give out more money, and also help women better understand and navigate the system. Even with the changes that are happening, that’s where we wanna become experts.
Dr. Fox: Yeah, I mean, that’s a huge area. I mean, for women they say, “Okay, they’re dealing with a diagnosis and that’s like an anvil that dropped on their head,” and they can finally figure out, “Okay, I need to see this doctor do that.” And then they find out, you know, “She doesn’t take my insurance,” like, ugh. You know what I mean? It’s like, “Now what do I do?” And it’s like a whole other world of pain that people go through on this totally.
Elana: Yeah, we’re doing that on a small scale, and we are doing that so when women call, but we could do more of that. And I think that times are gonna change. So I want to make sure that we stay on the cusp of the changes so that we are equipped to really help women navigate.
Dr. Fox: And the final thing is, you’ve been involved in this world for 15 to 20 years now. And thousands and thousands of women have come to you and your organization for help. And if one of our listeners is out there, and she herself was recently diagnosed with breast cancer or a family member, or she thinks she may have it, what advice would you give to her? What’s the message you would have to her right now about this journey she’s about to embark on?
Elana: That everyone’s story is their own. And while it’s helpful to speak to other people, no two people have the same diagnosis, no two people have the same story. And everyone is going on their own path. So learn from others. But remain yourself. And Sharsheret can help you do that. And I think if you can call or someone else can call and we can help you learn from others, but live your story. Because I think that you look around, there’s so much information out there, and I would tell you not to go on the internet alone. I think there’s so much information out there, it could be confusing, it could be scary. And you’ll think that everything that you see applies to you. And it’s just not true. Everyone is unique. And that’s how Sharsheret treats you. When you call Sharsheret you’re the only person in the room. And we will work with you on your story and your journey. And there’s a lot of good things out there that’s gonna help you get through it. And we can help you through that.
Dr. Fox: It’s amazing. Elana thank you so much, first, on a simple level, just for coming on and taking the time and talking to me so our listeners can hear about all the wonderful things you do and hopefully, you know, either get involved themselves by just checking out your website, or volunteering or donating, or if there are people who need your services, but also obviously on a bigger level just for doing what you do. I mean, I’ve known about Sharsheret for a long time. Like you said, I obviously know many people who have had breast cancer. And I’ve done patients, friends, family who range from doing very, very well to sort of have…living with this diagnosis, to obviously, people who have unfortunately passed away. And I’ve known that Sharsheret is a great organization. I’m happy to support you guys, but it’s just amazing to hear what you’re doing, and how you’ve grown, and how professional you all are, and what you provide. It’s really inspiring to those of us out there that you’re there, that you’re there for women.
Elana: Well, I really appreciate that. And we always say like I would love to…you know, I used to say I’ll retire when I have grandchildren. But I’m certainly not…
Dr. Fox: Apparently not.
Elana: And the truth is we would love to close up shop for lack of need. Until we get to that day, Sharsheret is gonna be around. We’re gonna be there because we see that it makes a difference.
Dr. Fox: That’s amazing. Thank you so much.
Elana: Thank you. I really appreciate this.
Dr. Fox: Thank you for listening to the “Healthful Woman,” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com. That’s healthfulwoman.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at firstname.lastname@example.org. Have a great day. The information discussed in “Healthful Woman” is intended for educational uses only. It does not replace medical care from your physician. “Healthful Woman,” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.