Sharsheret: Elana Silber

Season two of The Five-O-One kicks off with Elana Silber, CEO of Sharsheret, a nonprofit support organization for women facing breast and ovarian cancer. Did you know that 1 in 40 Jews of Ashkenazi descent carry a mutation of the BRCA gene, as opposed to 1 in 500 people of the general population? Did you know that men can also transfer the gene to their sons and daughters? Tune into the latest episode of The Five-O-One to educate yourself!

To learn more about Sharsheret visit www.sharsheret.org.

Talia: Elana, can you share Rochelle's story with us? I know she launched the organization in 2001, so let's start there at the beginning.

Elana: So Rochelle, her last name was Shoretz. Rochelle was 20 years old, arising attorney, and she had clerked for Supreme Court Justice Ruth Bader Ginsburg — an otherwise healthy mom of two young boys. She was diagnosed with breast cancer, and she searched in the Jewish community and in the cancer community for support to address her concerns as a young Jewish woman — questions about intimacy with her husband, raising children, balancing career and cancer. And there were a lot of offers for her to speak to grandmothers and aunts, but their issues were so different. And then one day she was introduced to another young woman, Lauren Wiser, and Lauren had gone through breast cancer about six months before Rochelle. So she took her through those harrowing days before surgery, through chemotherapy. and she really just got it, she just understood what Rochelle was going through and was able to give her the advice she needed. So Rochelle looked at her and said, we can't be the only two young Jewish women out there. If we could help five women a year, that would be incredible. And then fast forward, we're at 20 years later and more than 18,000, women have reached out to Sharsheret for support. So it started out as a peer support network where one woman would help another woman and we would match them. And then women said, but I have questions about this, and I have questions about that. And so Sharsheret’s programs grew from just that one peer support network, to 13 national programs to address all the issues of younger women facing breast cancer and now also ovarian cancer.

Talia: So you just mentioned Jewish women — obviously Sharsheret is a Hebrew word…the founder is a Jewish woman creating an organization for Jewish women. But I think I read somewhere that 20% of the women that you serve, are actually not Jewish.

Elana: Yeah. So 25% of the women that reach out are not Jewish, many have some kind of Jewish connection. They have Jewish partners, Jewish spouses, are raising Jewish children. What we've seen now, which is actually unbelievable, is that because of direct-to-consumer genetic testing, people are finding out their Jewish ancestry, even though they've never known that they were Jewish. So if you know for example, direct-to-consumer company 23andMe, they do have access to genetic testing for BRCA gene mutations for breast cancer and ovarian cancer. We had a woman who called last week, she has Polish ancestry, and she ended up testing, and she found out that she had Jewish ancestry and she's now reconnecting with her Jewish roots. So we have women who may never have known they were Jewish, or maybe have some Jewish connection. And then there are those that really just reach out to Sharsheret because we provide this one-on-one support to anyone and everyone who reaches out, and I think that's what makes Sharsheret unique. We're more than just a website, obviously, you can find us online, but there's always a human being at the end of the phone call. So if you call or email or you live chat, or you Facebook, it's a real person who's answering you. A lot of women who are going through a difficult situation or looking for that personal connection, and we've always been able to make that connection even remotely.

Talia: So let's say someone reaches out — they've been diagnosed with breast cancer or they know someone who has been diagnosed with breast cancer. How does your engagement with this individual begin?

Elana: So first of all, it's a really hard call to make. So generally, or half the time we hear from a loved one a best friend, a sister a spouse, a partner, a mom, etc. So you can call up and you can say specifically what you're looking for, or you can call up and just say, “I don't know why I'm calling but everyone said I should call you.” And then a social worker, or genetic counselor will listen to your story once, you do not have to share it multiple times. They keep really good records, and they talk to you. And it's not like you're filling out another form. It's not an intake form. It's a real conversation with a real person who understands — you don't have to explain your connection to Judaism, you don't have to explain your cancer in details, they get it, they know it. But we identify what is it that you're most concerned about. Is it physical appearance? Is it talking to your children? Is it about a fear of recurrence? And at every stage of the cancer journey we have women who are calling — maybe because their mom's had breast cancer and they're worried, or they heard about us at college, or they found out they have a genetic mutation, and were diagnosed 10 years ago, and they're worried about it now, or they tested for BRCA 10 years ago and heard that there are changes…so anyone can reach out, and then a social worker, or genetic counselor will keep in touch with you and get you the resources you need or find you a peer supporter. Everything is free. Everything is confidential.

Talia: So what happens if someone reaches out on behalf of someone else? Because there is that confidentiality, so how does that work exactly?

Elana: So if someone calls and says my friend Debbie was just diagnosed with breast cancer, or ovarian cancer, can you call her? So the answer is no, we won't call anyone who hasn't called us. What we will do is say, if you want you can do an email introduction with Debbie, because then we know that Debbie is okay. So we could do an introduction that way. Or we could say, tell us what's going on with Debbie. First of all, as a friend, we help caregivers, so we can help manage yourself so you can care for her better, but tell us what she needs anything that we would offer to the woman, we won't send it directly unless she gives us permission, but we will send it to a friend. And if a woman herself is very confidential, because in the beginning, people are so overwhelmed, and they don't want everyone to know we can send things in plain white envelopes. We can do everything anonymously, if they're not ready or don't want their neighbors to see things coming from Sharsheret, or they're just not comfortable yet sharing with the public, we can work with them to make it private.

Talia: Today the organization serves 200,000 individuals and their families. A friend of mine, his mother was diagnosed with breast cancer, and Sharsheret was really helpful to him in understanding his mother's diagnosis. So can you talk a little bit about what those services are that you are providing to those families?

Elana: So callers have families that need help, so we can work with the caller and her family to navigate the cancer journey. One program in particular that I think has really resonates is called the BusyBox program. And this is particularly helpful to women who have younger children. It is a box that comes to your house — it was designed by a woman who had five children at the time, all under the age of six, and her friend brought over a bag of toys and said, you're going to be busy, you're going to the doctor, you're having surgery, you need to rest and your kids are going to be all over you, so keep this bag of toys that are all age appropriate under your bed, and then as the kids come in, you'll have something for them to do. So she gave Sharsheret the program, and we find out the ages of the children, and the box comes with a whole packet of resources for all children, about to talk to them at their level. Talking to a preschooler is very different than talking to a first grader than talking to a fourth grader. So we have all these tips on how to talk to your kids, how to carry them through it, and then the games that keep them engaged, and it's called the Busy Box. Plus, like I said before, they don't just get the box, there's a social worker who then talks to them. There's a whole series of metaphors that you can use with children who are going through understanding this and typical situations that can keep them calm and feeling that they're in the know.

Talia: So what is your fundraising model to support this work?

Elana: So Sharsheret is a little bit like a grassroots model 20 years later in some ways, I'm really proud of it. We have many, many, many donors, we have about close to a $5M budget, and we have about 30-40,000 donors. In an average year we get about 15-16,000 gifts. So on the one hand, you're thinking why so many donors, but for us, every donor is a potential caller. We have one government grant from the CDC to develop breast cancer programs for younger women, and then we also have corporate support from pharmaceutical companies that are developing drugs that target breast cancer, ovarian cancer or BRCA cancers.

Talia: So that CDC grant, it funds specifically younger woman — what's the age range of the women that you are serving? And for those younger women, what are some precautions that they can take?

Elana: So when it comes to women in college, which is our youngest group, we tell them the value of knowing your family history, this is really the first step in protecting your health. When you go home for Thanksgiving or Passover, talk to your family, find out if your grandparents had cancer and what kinds of cancer, and it's not only breast and ovarian cancer that's important because we know the BRCA mutation also increases the risk for melanoma, prostate cancer, and pancreatic cancer. So you need to know your family history, both on your father's side and your mother's side.

Talia: And the BRCA gene is more prevalent in Ashkenazi women?

Elana: Yes. So the studies show that one in 40 Jews of Ashkenazi descent, that's men and women, men also carry a BRCA gene. And mutations can happen on their genes. As opposed to one in 500 or even greater in the general population, Jewish families are at 10 times greater risk. And so it doesn't mean both your parents have to be Jewish, it could be one parent, it could be one grandparent, as long as there's some Jewish ancestry that puts you at increased risk. And that's really important for everyone to know, you have to look at both sides, and go back generations.

Talia: So what happens if you find out that you do have BRCA?

Elana: Okay, so if you do have BRCA, the first thing to do is always work with healthcare professionals. So if you've decided to do 23andMe, and you get positive or negative result, but you were interested in the BRCA piece, we tell you to then get real genetic testing in a hospital or health care setting so that you understand the implications, because when you test for genetic mutation, it doesn't just affect you. It's not like a pregnancy test where you find out you're pregnant, you make all those decisions. When you find out you have a mutation, it's coming from somewhere, and someone else is also going to be at risk. So you have to have these important conversations with family and these are hard conversations.

Talia: Does the prenatal panel of screening that one does for prenatal, does that include BRCA, or no?

Elana: It does not include BRCA. So it's really important to know that J-Screen that does a lot of the prenatal testing with women and men who are Jewish, they are now doing BRCA testing, but it's a separate test. They're not together — one is for cancer, and one is for those prenatal diseases. So if you're going for a full panel, it does not include BRCA, unless you ask for it. So if you have a BRCA mutation, you go back to your doctor, and they will work with you. You also call Sharsheret. We have hundreds of young women in our system, who found out that they are BRCA positive and are struggling with having the knowledge that they are at increased risk, but they haven't really started family planning or thinking about marriage. And these are really heavy issues that are weighing on them. And we can work with you to speak with a professional, to walk you through it, and let you understand your options and also speak to other women the same age. So when you test in your 20s, you have all these questions, but you are not the only one going through it. There are hundreds and thousands who are also going through it and Sharsheret can sit at the hub and give you the information you need because it's about empowering women to take control of their health…so there'll be around.

Talia: Earlier in the year we hosted Chick Mission on the podcast, an organization that provides direct financial support to young women who have been diagnosed with cancer and are hoping to preserve their fertility. Is this also an area in which you could see Sharsheret getting involved?

Elana: So we are connecting women with organizations that do provide financial assistance. We are also sitting on a task force now that's trying to identify different ways to provide financial support for women who are not only preserving fertility, but also there's a very strong interest in PGT, which is pre-implantation genetic testing. So there are women and men who know that they carry a BRCA gene mutation, and they are not going through cancer, but they also want to screen their embryos. So they can basically stop the mutation in its track. Now, it's not an easy thing, and it doesn't always work because you can fertilize embryos, and they may all have a mutation. But we know families where they've been able to cut off completely this mutation from their family, because they went through PGT. The first woman in America who did it happened to have been a Jewish woman from Philadelphia, and she met with a geneticist, and she did it. And now she has two girls, and neither of them carry the BRCA mutation.

Talia: Wow. That's amazing. That is an amazing story.

Elana: It's unbelievable. And when it works, it's great. It's just, again, it's with IVF. And it's not a100% guarantee that you will find embryos without the mutation. But if you do, and they're successful, you've done an amazing thing for generations to come.

Talia: Elana, if anyone listening has suffered or is currently suffering from breast cancer, or know someone who is what advice would you give them?

Elana: First, I would tell them take a deep breath. I would tell them to call Sharsheret, I really would. I think that there's so much happening in this world. There's so much information. The internet is amazing place, but it's also really noisy. So I really discourage people from trying to find out medical answers online, trying to find what they need. It's just overwhelming. I mean, there's a tremendous amount of research in breast cancer, which is so reassuring for the future. But how do you sift through it? How do you identify what what is really applies to you? We encourage you to call Sharsheret and we can walk you through it. Sharsheret partnering with the medical community is the partnership you want for a healthier outcome.