Building The Noise with Elana Silber: EPISODE 023

SPEAKER_01 0:00

I said on the call, if there's one thing you remember, is make your annual appointment. This is probably like a couple of years after COVID. So I whatever. I always said that. And then there was a friend of mine who went to a dinner and she sat down next to this woman and she said, Oh, Shar Sharon. And she's like, Oh, Alana Silver saved my life. And she's like, Oh, you know Alana Silver? She's like, No, never met Alana Silver. But I heard her on a podcast, and I don't know, they were talking so much, but I heard her say, if there's one thing you do, schedule your annual appointment. So the day after I got off the phone, this is the woman speaking.

SPEAKER_02 0:30

Yeah.

SPEAKER_01 0:30

Said, I missed my mammogram for like a year and a half, two years. It was like post-COVID, during COVID, everything was delayed, and then people forgot and people got busy. So she scheduled her mammogram and she ended up being diagnosed with early stage breast cancer. And the doctor's like, it's good you came in because now there's stuff we can do about it. And she said, like, had I not been listening to that podcast and not heard that one line that I should make my annual appointment, I think the results could have been very different. She's fine now.

SPEAKER_03 0:57

Welcome to the Building the Noise Podcast.

SPEAKER_00 1:00

Ladies and gentlemen, welcome to the Building the Noise Podcast. My name is Matt Teresco, and today we're joined by Alana Silber, Chief Executive Offer of Cher Charette, the Jewish Breast and Ovarian Cancer Community. Alana's leadership reflects more than two decades with Cher Charette, spanning operations, executive leadership, and now the CEO role. Her work sits at the intersection of nonprofit leadership, community support, and the very practical question of how organizations show up for people facing breast and ovarian cancer with clarity, trust, and consistency. What makes this conversation important is Alana's Long View. She's helped build and lead an organization that's focused on meeting a specific community's needs while sustaining the systems, partnerships, and operational discipline required to make that support real. Alana, welcome to the Building Noise Podcast.

SPEAKER_01 1:53

Thank you so much for having me. Really appreciate the opportunity. I've seen some of your other podcasts, and I'm really honored to be here. Thank you for making the time.

SPEAKER_00 2:01

It's a privilege and a pleasure to speak with you. And we love I love the work that you're doing at Cher Sherad. Why don't you start out by telling our guests and our audience the work specifically that you're doing as CEO at Cher Sherret and the the focus, the patient focus that you all have?

SPEAKER_01 2:17

Okay, so the organization, it's a hard word, so I'm not calling you out on it, but we Shars Sharet. Shars Sharet the Hebrew word for chain, and it symbolizes the connection chain. Because it symbolizes the connections that we can make for women, men, and families facing breast cancer and ovarian cancer with the resources, the healthcare professionals, the other people going through it. Shars Sharet is that chain of connection and support. And the more people that are part of the chain, the stronger the support. So now, Matt, you are part of the chain. Anyone who interacts with Sharsharat and really makes a connection for us becomes part of the chain. So really and everyone's listening today. So welcome to Sharsharat. Um so, like Matt said, Sharsharat is the Jewish breast cancer and ovarian cancer community. Uh, we are a nonprofit organization and we provide emotional support. Uh, we have um mental health and genetic counseling, we have genetic counselors and social workers on staff, we provide financial assistance. We know cancer is expensive, and we provide life-saving education and information. And that's a lot of words, but at the end, we don't do anything medical, but we round off everything you need as a cancer patient or someone who is at increased hereditary risk, everything that's not medical. All the from the practical to the spiritual, Shar Sharet helps people from wherever they are, all across the country. How did you get involved? So I started out actually as a volunteer. I didn't realize that at the time Shar Sharot would be what we would call a startup. This was back in the early 2000s. I had been living abroad for a couple of years, came back to the States and was looking for something meaningful to do. I had an MBA in healthcare, and I'm pretty connected in the community. And I came to hear this young woman in my community speak about starting an organization. She was her name was Rochelle. She was 28 years old. She was a rising attorney. She was a clerk for Supreme Court Justice Ruth Vader-Ginsburg. Um, and she was otherwise healthy and diagnosed with breast cancer. Um, and she looked in the cancer community and she looked in her own community, and there really wasn't support for her as a young woman. There were plenty of offers to speak with grandmothers and aunts, but really she needed to speak to someone. She had two young children, she had to balance cancer in career, she was married at the time and managing intimacy with her spouse, and it was all too much, and nobody really addressed her issues. And then she was fortunate to be introduced to another young mom who was about six months ahead of her in her cancer experience. And she literally carried Rochelle through those harrowing days before surgery and chemotherapy. And as they were going through it, Rochelle, obviously a genius, um, she said, you know, we can't be the only two women who need this. If we can help five women a year, let's get them peer supporters and let's, because this is what we need. We need someone like me who's going through it. Uh, so their goal was if they could help five women a year with this organization. By the end of the year one, a thousand women had reached out um from all over the country. They were back in the 2000s, they were always thinking, look, active women are busy, let's do everything remote. Everything from, you know, they could call in, you could US mail, you know, it was just when Facebook was getting on and and social. So they started out, and now 23 years later, Shar Sharts evolved from that peer support network to this organization that provides all those services that I discussed. So when she came to speak in the local community, I went to hear her. And at the time, so I'm dating myself because it was probably like 24 years ago. I was a really I was a young woman too, and I was thinking, wow, I really should get involved. So she put out these volunteer forums. I got involved, we did an event, was very successful, and then she asked me if I wanted to come work, and I really was looking for something meaningful. I grew up in a family where community service was very much a priority. Um, and again, I had this very strong interest in the business side of healthcare, so building programs for people and really caring about women's health. Um, so I started as a volunteer and then things went well, and then she asked me to work, and I said, Yeah, I was I had four little kids at the time, and I was like, Wow, how am I fitting this in? But I created like a whole thing like called From Carpal to Career, and and it became my career, and it was just the two of us, and then women started calling and men started calling, and they said we need this and we need that. So we started to create lots of different quality of life programs, and fast forward now, we're at year 25 of Shar Sharet, it's our 25th year, and we have over 50 staff members, um, and we have teams all across the country. Um, and we've already helped more than 45,000 women plus their family members, and we've so we have about 300,000 people that we've helped between patients and their families, and we do a lot of community education starting on college campuses.

SPEAKER_00 7:23

God bless you guys. This is absolutely unbelievable. I don't think that many people recognize, as you've laid out, just the sheer impact that cancer has. It's not just the patient, right? As you referenced, it's their family members as well. And where do they go to get questions answered that they may have, and husbands or spouses, right? Um so to be able to bring that community around them with Shar Sherrett and and create that chain uh is absolutely amazing. Now, you joined after hearing her speak, but I guess what would you say was the hook for you? You to you talk about carpool to career.

SPEAKER_01 8:01

Right.

SPEAKER_00 8:02

So tell me a little bit about that.

SPEAKER_01 8:03

So for me, it was like, look, I was going to the gym and I was uh, you know, taking care of my kids, and I found it very meaningful. But look, I wasn't the most fit person at the gym, and my kids weren't the most we know, I wasn't a tiger mom or anything, but um, and and it really appealed to me because I really wanted to help other people. And that's what I see at Shar Sharett when these women call and they're going through cancer. I spoke to a woman last week. She just had a double mastectomy, um, and we could like she had a big surgery, like an eight and a half hour surgery, blood transfusion, everything. All she says to me is Alana, so in a couple of weeks, I want to start, you know, coming and helping, and who else can I help? So I think it's this that's part of this Shar Shared energy that women and people are involved with Shar Shared, they want to help. Um, and so I said to her, you know, as soon as you heal, let's talk about you helping. But I think that there's there's a certain energy to being able to help other people, and especially for people who are going through it, they feel like they've learned a lot and they want to give back because they've they're very much appreciative of what Shar Sherrod's done for them, helping them build their medical teams, getting them ready for surgery, post-surgery, um, educating them in like what had it. Like I was talking to this woman's mother. She has a mother in her 90s, the mother had breast cancer, the sister had breast cancer, you know, and so now they're the one who's going for surgery is worried about her mother being worried about her, so Shar Sherrod can sit in and take care of everyone. Yeah. So I think for me, it was this human touch, but also the challenge of building a business. Uh, you know, the little MBA in me, while it's not like in finance, but it's in healthcare, I realized that there was a real need for this, but you really it is a business at the end of the day, and you want it to run smoothly. And these these patients, there are customers, everything's free, but uh you want it to be as beautiful, and you know, people when you're sick, you wait for hours. We don't want anyone to wait. We have a very good response time, everything is sent to you, everything is convenient, everything is reliable. Like it it's it's too hard not to have that. Yeah.

SPEAKER_00 10:05

So I I think that's you speak to something that I think is often misunderstood about the nonprofit world, which is that no, this is a business. Right? This we're not a group of people, right? We're definitely not an organization, right? Right? So, I mean, I uh what would you say is the most misunderstood uh element about your role and about Shar Sharot?

SPEAKER_01 10:27

I think that people think you know, Shar Sharet's like a nice place. Now it is a nice place, and we have compassion, we care, but it is so busy. First of all, there's no one else doing what we're doing out there. I think people don't realize the amount of time and the breadth of who we reach. Like we talk about breast cancer with just women, but that's not true. First of all, men get breast cancer, and also we talk a lot about genetics. I think that's what the future is. We're going to be able to attribute probably every disease to a genetic uh mutation or something in genes. We don't have that yet. We don't have the discovery yet. But when it comes to breast cancer and ovarian cancer, there are some very widely known mutations, which I'm sure a lot of people in the audience are familiar with. They're called BRCA, BRCA, and it increases your risk for breast cancer and ovarian cancer. But what people don't know is that also increases your risk for other cancers like prostate cancer, pancreatic cancer, melanoma. So men are also carrying these mutations. So when you think about breast cancer, you're thinking, okay, the dad, the spouse, the brother, the best friend, the son. But the genetics component means that they themselves are at increased risk for cancer, including male breast cancer before these other cancers. So we are trying to also educate the male community about their risk for cancer and the risk that they have to pass these genetic mutations on to their children. So I think uh people don't realize that Shar Shera and that we're working with people even before cancer, male and female, or however you identify, every person, then through the cancer experience and even into survivorship. So it's a place that people can turn to at every stage of cancer, before, during, and after.

SPEAKER_00 12:11

Sure. Yeah, no, and you bring up the genomics piece, which I think is just so vital for people to understand. I think by the latest data I saw over 60% of patients weren't having genomic profiling of their tumors, um, let alone you know genomic screening to understand their cancer risk. What do you recommend patients be doing uh when it comes to genomics?

SPEAKER_01 12:35

So we talk about genetics and genomics. So for genetics, where I think that a person really has control before they even enter the medical community. When genomics, you're already with a doctor, but with genetics, knowing your family history, honestly, is the very first step. Like everyone who's on the quote now can, if their family, and again, this can be held in a private place. You don't have to be a poster child for cancer, but you should speak to your parents and your grandparents if they're around and your family and say, what were the cancers in our family? What is our medical history? And I I guess throughout everything, right? We know that diseases run in families and risk is important. So traditionally, people would say, okay, um, a man would be asked about his family history, and he would only think about the men in his family. But we're telling you, find out both on your father's side and your mother's side. I mean, what we're seeing at Church Eric a lot now is a woman will be diagnosed with breast cancer. Maybe a woman in her 50s, 60s could have a 30-year-old daughter, and the mother tests negative for a genetic mutation and had cancer. So the daughter or the son thinks we don't have to test. But the family speaks to genetic counsel, they say, let's just round it out, let's test it. And the offspring, the children, find out that they're positive, and they're like, How could that be? Our mom had breast cancer, and we're not, and we have a mutation, but she didn't have a mutation. Well, the dad had it, even though he didn't present with breast cancer. So, what we tell everyone, we start on college, we're on every college campus because we are the national surrounding philanthropy for the AE5 serottery. So, and we have worked with AE Pi and other campus groups, and our first charge for all these students on campus, you're 18 to 25 years old, go find out your family history of cancer because that's going to start drawing your picture. Then the recommendation is to go for genetic testing at age 25. So, but we you should be doing genetic testing with a genetic counselor because this is not like a pregnancy test. You either find out if you're pregnant or you're not. When you take a genetic test, for example, it could be a family that's riddled with cancer and you come out negative and you think, okay, that's the end of the story. But family history plays a big role, and you there are things you can do because to protect your health, because being from a family where there's a lot of cancer, even if there's no known mutation, because like we said, there probably is one, but we haven't found it yet, puts you at increased risk and you can already start additional screenings. There are other things you can do to prevent cancer or catch it in its early stages when it can be cured. And that's really important. So family history is step one. Like everyone on the call, just start having these conversations. We do a whole thing around Thanksgiving. We sell these pies. It's like a big pie sale, it's a good fundraiser. Um, and it takes like the traditional pie sale and makes it high-tech, no, relatively high. But you know, we're selling, I don't know, 100,000 pies, let's say. But with every pie, there's some educational material. And we say, like, look, you're getting together with your family around the Thanksgiving table. It's not really the kind of conversation you want to have, but take the opportunity to learn, like, you know, what was grandma's cancer, what was, you know, grandpa's cancer, what was our great aunt, you know, Susie, what did she have? Because that's going to build your profile for yourself and will protect your health. Because we no longer have to necessarily wait for cancer to hit. We can turn it around.

SPEAKER_00 15:55

I love that. And you know, what I love that you guys are doing with that genetic counselor though, too, is I used to hear a lot of folks talk about, you know, it's scary. It's scary to know. I always felt it was scarier not to know.

SPEAKER_01 16:07

Yeah. Right. I mean, if it's still a thing. People are like, I don't want to know. But you know what? When you see someone suffer, you're like, maybe I should know. Maybe I should know.

SPEAKER_00 16:16

Exactly. Right. And at least a genetic counselor can talk you through what is what is being tested, what's coming with those results, and even more so, as you referenced here, it's it's that family history and what do the results mean together.

SPEAKER_01 16:30

Correct. It's not one, it's not one answer. Like one is not that the other. But I feel like that's easy to go if you can, if you can speak to your parents and find out and and keep a love because you're gonna have to tell other family members and cousins, like genetics and families run more than just one, you know, vertically. They run across. Yes. And Sharch can have help you have these conversations. What we do is we can set up a conference call because you could have someone in Miami and someone in Memphis and someone, you know, up in Maine, and we can make that conversation facilitate it because how do you tell people? Maybe you have cousins you don't really talk to, but you know that they're at risk because you share dad, you know, bret dads are brothers. So it's really important to have these conversations and we can help facilitate those.

SPEAKER_00 17:15

I love what you said that though, said there though, which was keep a lock. Right. This is this is information that is important for you to know. It doesn't change, right? Your genetics are your genetics, but it's influential for so many other people outside of yourself. That's another reason to do it.

SPEAKER_03 17:34

Yeah. Right?

SPEAKER_00 17:35

Is and and to keep this information on hand, knowing that as you get older, if you have that information, it could be the most valuable thing that you have in your medical history.

SPEAKER_01 17:45

Yeah, and look, every time you go to a doctor, I I don't know, you see these big intake forms, and there's a million questions. Yes. Does anyone in your family have this, have this, and that? You know, if you are armed with the information right away, your doctor, these doctors care. Now I know they don't have 15 minutes with you because that's the reality in the US today. So that's where we come in. So while we don't provide medical information, we can help you make informed decisions once the doctors recommend things, and we also can help patients be their best advocates so they can speak up and ask questions and understand what their options are because there are a lot of options, and we're very fortunate to live in this country which probably has the best medical care in the world. If we can access it, it's the most, it is, it is if we if we can access it, which is a great point.

SPEAKER_00 18:29

Now, Alana, I I the a question I want to ask you you know, do you uh does Sharsheret require that a patient have a doctor that sends them for genetics, or can patients come directly to Sharsharrett wanting to seek that information?

SPEAKER_01 18:45

Yes, so you don't you don't need anything to call Sharshar. Let me just put it out there. Toll-free number, you can text us, you can find us on Facebook, whatever you want. You can you don't need a doctor to call us. And what we do is if you're interested in genetic testing, we partner with organizations that can make it very affordable and you can do it from home. When you want to test for BRCA and other mutations, it's a spit test. You don't have to go and people are afraid of mutables. You don't have to do it. It can be done in the comfort of your home. We can arrange for you how to get it. Then they work with a doctor and with your insurance. You can also pay out of pocket, and it's for some people, it won't be such a burden. It's a few hundred dollars. So there are ways that we can help you make the decision and figure out how to get it easily accessible. There were years, we're going back before when it wasn't accessible to get genetic testing. There was a pharmaceutical, there was a company that owned human genes.

SPEAKER_00 19:38

Yeah.

SPEAKER_01 19:38

And that they owned the gene. That's right. They didn't only own the data, they owned the gene. So once the Supreme Court uh reversed that, their the access has been much better. But you want to do it in a reliable, you want to have a reliable lab reading it. Like there are companies that were doing genetic testing more for entertainment, but then they ended up having access to some health genetics. So we recommend that that's you know, very nice for entertainment, but really should be if you've done testing with those entertainment companies, it's time to think about doing it through a medical um setting, and we can arrange for you to find the right place to do that.

SPEAKER_00 20:18

That's a great point. Cause yeah, I mean, going back the last 10 years, um, may it be finding out your ancestry or whatever.

SPEAKER_01 20:27

And it was gone, it was good, but then all of a sudden the medical information popped up. Honestly, people didn't even understand what it meant. And that's and that's scary.

SPEAKER_00 20:36

And they didn't know that it was being evaluated either.

SPEAKER_01 20:39

Right. Well, I think you had some of them you had to check off that you wanted to know.

SPEAKER_00 20:42

But people But they also didn't know that they had the full report. Right. Right.

SPEAKER_01 20:46

I had people call and say, Oh, I took it, I never looked at it. I never looked at it. And then we see highlighted in yellow, you are BRCA positive, like, oh, I I didn't see that. You know, so busy because you weren't looking for that. They were looking to see if they like, you know, liked pasta because they have something. That was it. And they're like, wait a second, what is that? So we were happy to help, but like they had the information. So I mean, it could be life-saving.

SPEAKER_00 21:12

How do your how do your your your children? You said you have four kids, how do they describe what you do?

SPEAKER_01 21:17

So they've grown up with it, so they are like the whole family is sure, share it, everything. I think, I mean, my oldest child now is a doctor, and I wonder if that's congratulations on that. Thank you. It's a big deal, you know. Very, very proud. Uh, so I think that maybe the interest in healthcare field went to that. You know, I have an uh my other kids are very big volunteers now that they are in the age demographic that's affected by certainly on the younger age. I mean, my best friend was diagnosed at 30 years old with breast cancer, with um triple negative breast cancer. Um, and she has become a real young professional who's out there at. Educating women and even men about their risk for cancer. She's been a tremendous help to the organization, really bringing what that age demographic really needs from Sharet. We started virtual support groups after years of people not wanting them, but now somehow people like them. Maybe the whole Zoom effect, people don't mind being on screen and having these really important conversations. Um, they go out and they speak publicly. So I think my kids have internalized what we're doing and they've taken more control over their health, getting their information and doing testing and really trying to take, really trying. There's so many things in this world that we can't control. And even once you have the information, look, at the end of the day, there's only so much we can do.

SPEAKER_03 22:42

Yes.

SPEAKER_01 22:43

But the worst thing is when we hear what people say, like, Oh, I didn't know about Char Share when I needed it, or I didn't know that there was an option for me to figure out.

SPEAKER_00 22:49

I wish I knew. Right.

SPEAKER_01 22:50

So, so those, so I feel like my kids have really seen me and built their own careers around it, and also built on this concept of helping others and community service and things like that. They see it as they see it as a service. I mean, it's a job for me, but it but they see it as a a nice thing to do for the community too.

SPEAKER_00 23:12

Sure. It's your job, but it's also your passion, and it's got to be a compliment to see your children getting involved, and more importantly, the patients who have had the privilege of working with Shard Sharet that then want to come back and assist in any way that they can. That's got to be quite the compliment.

SPEAKER_01 23:27

Yeah, I mean, half our staff are volunteers that we like. So now we don't have so many volunteers because they're all working here. Uh, but the demand has been great, and so many of them have helped us. I mean, that's how we build the programs at ShareSharit. We don't think like, oh, let's do this. It's based on the women that we serve. We send out an evaluation every year. We ask what they need, what do they want. So we're very sh very focused on evaluation and focus group and hearing from the women and the that's fantastic.

SPEAKER_00 23:55

So tell tell me what you're seeing at ShareSharit that maybe folks wouldn't necessarily know uh about the the patient community or about breast cancer or ovarian cancer today.

SPEAKER_01 24:07

So, first of all, we talk a lot about genetics, but the reality is that only five to ten percent of breast cancers can be attributed to a genetic mutation. Again, I do believe that there are more genes out there that we haven't identified. Yeah. But right now, so that's why you can't rely alone on genetic testing. You really have to go for your annual, you know, if you're a woman, you go for a mammogram of 40. If you have dense breasts, the labs are required, you know, the the facilities are required to tell if you have dense breasts. Mammogram is not enough. Mammogram is the gold standard to start with, but then they have to consider MRI. So it's really important to go for your annual test. I mean, I was doing a podcast and I don't know, I think it was I'll go on it, I'll go on anywhere where people are listening because this is really life-saving information. So your it actually makes sense for me, VM. But I was on a fashion one, like say I wear black 90% of my life. Um, but I said on the call, I was like, if everyone remembers more like my wife, black. I don't know what we do with that. But I said on the call, if there's one thing you remember, is make your annual appointment. This is probably like a couple of years after COVID. So I whatever, I always said that. And then there was a friend of mine who went to a dinner and she sat down next to this woman and she said, Oh, Shar Sharon. And she's like, Oh, Alana Silver saved my life. And she's like, Oh, you know Alana Silver? She's like, No, never met Alana Silver. But I heard her on a podcast, and I don't know, they were talking so much, but I heard her say, if there's one thing you do, schedule your annual appointment. So then after I got off the phone, this is the woman speaking, yeah, said, I think I have I missed my mammogram for like a year and a half, two years. It was like post-COVID, during COVID, everything was delayed, and then people forgot and people got busy. So she scheduled her mammogram and she ended up being diagnosed with early stage breast cancer. And the doctor's like, it's good you came in because now there's stuff we can do about it. And she said, like, had I not been listening to that podcast and not heard that one line that I should make my annual appointment, I think the results could have been very different. She's fine now. So I was like, okay, I'll take that. I saved their life. Yeah. Yeah.

SPEAKER_00 26:05

So those are the That's amazing.

SPEAKER_01 26:07

That's what I'm trying to get the message out there.

SPEAKER_00 26:10

Yeah, no, and and this is where I think so many folks in may it be in the industry, um, or just the general population, just don't understand that there are groups like Shar Sherrod out there that, you know, folks like you are worried about people's health when they don't even think about it. Um, and it it's is a testament to the the great work that you guys are doing, but also the need for us all to pause and think about ourselves every once in a while and our own health and how long we want like to live this journey. Uh, because as you said, there are many things that we can't control, but there are some and that we can. Uh, but and having that information and education is one of the most important steps.

SPEAKER_01 26:49

Right. And I think it's again for the men too. Like I think they traditionally women were more open to hearing these conversations, men were less so.

SPEAKER_00 26:59

We don't like to reference anything below our neck or above our mouth.

SPEAKER_01 27:04

Yes. So they rely on their mothers and their sisters and their spouses and their partners to help them out. But but we are seeing a little shift. So when you talk about, you know, what we're seeing differently, I mean, we are seeing more young people diagnosed with cancer. We are seeing that, you know, we're seeing that lifestyle behaviors are critical to health. Like it's not, you know, the whole GLP1 craze. Well, there's a lot of criticism, there's a lot of positives, but when it comes to cancer and breast cancer, obesity is one of the strongest risk factors. So weight loss is really important. Uh, you know, no smoking, obviously we've heard that, but you know, alcohol is also a contributor to cancer. So I know the culture is, you know, have a glass of wine, it's really a risk factor for cancer. Um, we know people are doing it, you know, it's hard to break, but they need to hear it. Exercise, these are all very important things that can help reduce your risk for cancer. It's not just, you know, to look good. You will, you can really protect your health. So it's not, obviously, there are people who are in amazing shape who end up being diagnosed with cancer, uh, but it definitely helps to lower your risk. So I think people need to know that because as more young people are being diagnosed, some of it could be attributed to unhealthy lifestyle behaviors. So we're really trying to promote from this young age to really understand your body and to speak with the doctor and get the right exercise in and the right diet for you and make sure that you keep your weight in check and all that.

SPEAKER_00 28:44

And I mean, what are your thoughts? I I I've even heard many young women these days beginning to have these discussions when they're thinking about having a family. Yeah. So how can we plan for that?

SPEAKER_01 28:54

We are definitely, first of all, we're also recommending that women have an assessment with their doctor at 25 just about their risk. What's my risk? Like again, going over family history, other things. So have a risk assessment at 25 and then be followed along that. I mean, we're seeing also amazing, amazing advancements in technology when it comes to family planning. So I don't know if people are aware of this, but when someone carries a genetic mutation, they could possibly potentially cut off the genetic mutation that's been in their family for generations. And what does that mean? So let's say a man or a woman has a mutation in one of the BRCA genes, and they say, I don't want the next generation to have to have this heavy load that they're at tremendous increased risk for cancer. Because if you don't have a mutation, if you're a woman, you have a 12% chance of getting breast cancer. If you can't, if you have a mutation, it shoots up to like 80-something percent for breast cancer and 40 to 60 percent for ovarian. These are high risks. So you say, I don't want my baby to have to deal with this. So what they can do now with technology is they do IBF, and unfortunately, there are a lot of couples dealing with infertility anyway. So they go in and they can screen the embryos and they can find embryos that don't have these mutations, and then they implant the the embryos that do not have the mutation, and that means that that child that results will have the same risk for cancer as anyone else, no increase to and now they have literally changed the trajectory of cancer in that family. And that's something you want to know when you're young, right? Because uh your results are better when you're young and you're ready to start a family. And some people are freezing embryos, they're not ready yet, maybe, especially those who are in cancer treatment. You can do that before and then and deal with it later. We have women doing throughout.

SPEAKER_00 30:39

A great component too for folks to remember is that we you can have uh fertility preservation, right? If you do, if you are unfortunately having to go through cancer treatment while young, yeah.

SPEAKER_01 30:50

So we're we have a whole program just on that. So these are like for me, it's like, oh, I say you know, PGT and pre-implantation. It's like second knowledge to me. But it's all new language when you find out you have a mutation or if you find out that you um are diagnosed with cancer and you're hearing all this stuff, and it's a little bit like I don't know, like do you ever listen to like Charlie Brown where it's like we telephone take someone with you to an appointment, but even they don't know what's lying. So you call Sharsha. We have a whole program just on uh young adults and family planning and PGT and how to do it, and and then these things are expensive, so we help people figure out financial assistance. We also provide, we give away between a million and a million and a half dollars a year with who are the cancer, is it's expensive. It's like there's a term for it. There's financial toxicity, so anything that we can help alleviate, money's kind of fungible. So if we pay for something, they can use their money for something else. Like you shouldn't have to choose between quality of life and something else that you need to do. But you say, I'm not gonna do it because I can't afford it, Shar Share can help with that.

SPEAKER_00 31:59

I I love that because it it is so true. There in the United States, we really shouldn't have any barriers to folks getting the healthiest outcome that they can get. Um, and it's great to hear that there's groups like yours that are out there that will support or find ways to support patients who need it. Um, because yeah, I mean, it's gotta be amazing to hear of uh someone whose family for generations has been ravaged by cancer put it into it with PGD and PGT.

SPEAKER_01 32:27

The problem with PGT, which also we have to educate is it's not always successful. We've had people who've done it and every embryo has the mutation. So then you deal with this with this challenge. Do I implant an embryo that I know has a mutation? If I get conceived naturally, maybe I don't know, at least I'm not you know consciously putting it in. It's a question, but but we've all seen some very positive um outcomes.

SPEAKER_00 32:50

Fantastic. Yeah, it's it's an option, right? It's there's nothing worse for from a patient's perspective than not knowing an option existed. If you could have known and you know, now having the the negative output of whatever that might be. Um, but if you at least know, if you know what your options are, if you're educated, then there's no second guessing. Right.

SPEAKER_01 33:12

I do think that over the years, since I've been here quite a while, that the focus on fertility uh from the medical side has definitely improved. You know, like obviously priority one, you want to save the patient's life, but now we have the opportunity to save a patient's life and also preserve fertility because there's so many people that want to have families after cancer and and do incredible things so that they can and ensure that they can have healthy, normal lives even after cancer.

SPEAKER_00 33:41

Yeah, there's been plenty of folks who have fought that fight on behalf of patients for the last 30, 40 years. Uh, and I'm sure Cher Sherrett has had its hand in that fight to ensure that folks have those those preservation opportunities uh with cancer treatment. Because it is it it's really sad to hear of uh we actually had a guest last week who um wasn't made aware of how chemotherapy was gonna impact her uh abilities to be a mom in the future, and it's still very difficult for her, uh, nearly in her fifties, struggling with that fact that no one made her aware. Yeah. Right? And it's it doesn't have to be that way. If we could only if folks would only know that listen, as you said, you're gonna have very limited time with your doctor. But if you know that there's somewhere else that you can call. Yeah. It's actually so it's it's national average now is down to seven. I know that's pretty well. I know. Yeah. It I mean you're getting, let's say, uh 10 to 15 with a nurse beforehand, but it's almost becoming like going to the dentist where the doc has the time to come in, make sure everything was okay, maybe write a prescription and move on. Yeah. But if at least you now know that Church is available and you know how to get in touch and you know that you can get all of the educational information for you when you're ready, then that's even more important.

SPEAKER_01 35:07

Yeah, yeah. And it's a and it it's a very positive place. Like a lot of people ask me, is it a sad place to work? And I said, the truth is that most people are doing well. And we obviously, of course, have our sad days, but there's really nothing more empowering for a patient to say, like, even through our peer support network, to speak to someone who was diagnosed with the same thing 10 years ago, 15 years ago, and has moved on and their life has uh moved forward. And so I find it a very optimistic, hopeful, and empowering place. Like a lot of knowledge, a lot of power for that. And people and people, and they're doing well. I mean, it's really hard when it happens, but when they get through it, it's it's just it feels it's very gratifying also to feel like you've been a part of their experience.

SPEAKER_00 35:52

There's a reason that there's this big survivorship campaign going on in cancer, right? Is that you know, not everyone gets a death sentence when it comes to cancer, and it really helps if you're educated and knowledgeable and we catch it early.

SPEAKER_01 36:07

And I do think the narrative has changed, right? Like you talk about death sense, it's people are more open. I mean, the incidence of cancer, I don't know if it's almost one in every two people, uh, will have a cancer. So I think the conversation is out there, so it's a little less isolating. But I think when it happens to you, you feel very alone. So having these connections are really critical to you're you're not alone. The the reality is there are plenty of people. Everyone's individual and every case is different, but you will you will find a community at Share Sharot if you've been diagnosed with breast cancer or cancer or have a mutation.

SPEAKER_00 36:42

That's fantastic. I mean, tell me more about the programs because this is where in our work with the industry, pharma and biotech companies are always looking for innovative groups. And and from everything I've heard from from the work that you guys are doing at ShareSharit, as you said, you're going to your community to gather the insights of what they need. You have this massive library of information available. Uh, how do you come up with these programs? What's on the docket?

SPEAKER_01 37:07

Okay, so first of all, I want to put it out there that we are a Jewish organization and we serve all women and men of all backgrounds. 20 to 25% of the people that reach out with cancer are not Jewish. And we are happy to help everyone. You just have to be comfortable seeing Jewish. So I'm just putting it out there. So, you know, everyone should anyone on this call. If there are concerns about breast cancer, ovarian cancer, we're also dipping our toe into endometrial cancer, another gynecologic cancer. So that you can reach out to Sharshara. You don't even have to know why you're calling. So you don't have to know our programs. So, like if you shut down now, you're okay. But again, we're not, we're not everything that's not medical. So, first of all, we've come out of COVID understanding the value of mental health. Sharshara has these mental health counselors, social workers who really listen to you. You tell your story. You're not filling out an intake form, you're sharing your story, and they're gonna figure out like what programs they need. So, for example, if someone is going in for a mastectomy, Sharshara will make sure they know exactly how to prepare for surgery. They will send you a kit with everything you need from drain holders to a jacket, to to a jacket that holds drain holders to a seatbelt cover. So when you leave the surgery and you have to go drive home and you've just had surgery across your whole front of your body, you have a seatbelt cover so it doesn't hurt. Um, all the things you need to get ready for surgery. If you're going through chemotherapy, that's a different kit. If you have young kids at home, they're different kits. So Shar Sharet sends out kits for every step of your experience, even in survivorship. How do you you're saying goodbye to your oncologist? What happens now? We're gonna help you with a special kit. We talked about healthy eating, you're gonna get a cookbook, we talked about exercise, you're gonna get routines and bands, and I don't know, they send all that stuff. So you have a mental health counselor that is literally your quarterback. And anything like I had someone call me and they said, Um, I don't know if I should be having a mastectomy now. I'm not my doctor, so I'm not ready, but I want to build my team. So the social workers will help you find like who are, you know, plastic surgeons in your community. Uh, you need, don't forget you need a physical therapist, all this stuff that you need because you can't think of everything. Share Shared thinks of it for you. We have a program called the Waiting Room, even before cancer. Most women who go for a mammogram have a scare and they have to have a biopsy. So they can't tell anybody yet because it's not cancer. They don't even know what it is. They don't want to worry their mother or their sister or their best friend. So they call Shard Sherrod and they're in the waiting room. And we have coping mechanisms because probably one of the worst things about cancer after worrying about dying and losing your hair is waiting. You're waiting between tests, you're waiting to hear this, you're waiting for results, you're waiting to see this. And so Shar Sherrod is there, and we have a special program just called the waiting room to keep you occupied, to keep you focused on the right thing, not writing a whole history of what's not really gonna happen. So we work with that. Um, then we have a whole genetics program. So we have a genetic counselor on staff. We have two actually on staff who are talking to women and men and families all day long, also with every resource that you need to understand it. We host 65 medical webinars a year on topics that are relating to this. So, for example, someone wants to know if they should be taking out their ovaries, you know, they finished having children, maybe they, or before, when, you know, is it going to increase my risk for cancer? So we we transcribe and we videotape every webinar, and they're all on our website, and then you could find them through that. Um, we have this whole educational program. We run 900 events a year providing education in local communities about your risk, and then an opportunity to speak with someone on the team to help understand your risk. Um, we have a program just for young kids, how to talk to your kids about cancer, how they can help their moms at certain ages. We have a mentor program for college kids, help high school kids whose moms are diagnosed and where that falls for their own health and how to manage it. Um, so we have multitude of programs and they're available for anyone, everywhere across the country. Everything is remote and everything is you can, however, it's convenient. We like just want to make it easy for you.

SPEAKER_00 41:24

Yeah. This is absolutely amazing. And and if you've not worked with the industry, they should be knocking down your door.

SPEAKER_01 41:30

But we do, we actually do. And the other thing I forgot to say is that we do this financial assistance program, which it brings everybody in. But um, yeah, so we work with about 24 to 36 companies who are bringing drugs to market that target breast cancer, ovarian cancer, or VRCA mutations, and um facilities that make devices for these kinds of cancers.

SPEAKER_00 41:53

Sure. Um, and so we're the best way to keep on the cutting edge.

SPEAKER_01 41:56

Yeah, and they and the truth is a lot of our programs have also been uh developed because of what we're hearing, what they're hearing and what their priorities are, and then we bring it back to the women and we say, What do you think about this? Do you think this is important? And then they'll say, Well, this is what's important to us, and then we go back to industry and they they are invest in our programs. We're not promoting a specific drug or anything like that, but they're giving back to the community for which that they're providing medical um uh devices and medicines.

SPEAKER_00 42:29

I think that's really important for people to understand is that they're coming to you with what they're seeing, you're bringing it to your patient population, identifying what of that makes the most sense for them, and running with going back to industry and telling them this is what we're going to do.

SPEAKER_01 42:45

We also have access to patients.

SPEAKER_00 42:46

Industry. Yeah, but it's not industry telling you what to do.

SPEAKER_01 42:50

No, they're telling us what they're seeing, and then we we have sometimes they'll say we want to speak to women who've gone through this, and the women want, they want to tell pharmaceutical companies about their experience, they want to tell them that. And I think it's very empowering for a patient to have that. So, what the industry partners are looking for Shar Sherrod is not just data, because we have that, and we could talk a little bit about a new initiative we're about to embark on, but they want the patient perspective, and Shar Sherrod has built a community trust.

SPEAKER_00 43:21

And so you can find patients that have the experience they're looking for to share their feedback, and I think that that's critical, both from the patient and from the company, so they can uh I think that's that's the most important thing for industry to recognize, and this is what I tell them all the time is that you're not you don't have the trust. Shar Sherit has the trust.

SPEAKER_03 43:43

Yeah.

SPEAKER_00 43:44

And that's the most important thing, and you're gonna protect that and you're gonna do what's right for the patients. But you don't you can't go it alone. You have to work with organizations like yours.

SPEAKER_01 43:53

Yes, and I think that uh they we we definitely bet like we won't send anyone who's not ready and we Work with them and and if then they see the value of their voice and they'll hopefully see changes that are better that they've been through. We're also now, because Shershard's been around for 25 years, we've spoken to at least 45,000 patients who've actually gone through our programs, spoken to a social worker or gender counselor or got financial assistance or got a kit or attended an educational um webinar or event. So now we have that. We have a lot of data all over the place, but none of the women who signed up for us signed up for research. And I think we know that there is a lot of good data with these women. So we're about to launch a registry, a patient registry for breast cancer and ovarian cancer. Um, because we kind of basically have one. It's just the data not, it's not organized well because it was a grassroots organization and we had different people inputting it, and no one gives us their medical records. We're not HIPAA compliant, but this new initiative will make our database available for research. So I think industry would be very interested in the data, but also not just the data sets. We're if a woman opts in, she'll be part of this patient access program. So companies can actually meet the people behind the data if they agree to our share it sets it up. So we're about to that should launch at the end of 2026. We're hopeful we're working with a company who has a lot of experience building registries. But we know that we we've been serving the women who've reached out to us over the last three years and they're interested. But we also see in our educational programs, because we have a whole arm of just community education, that people said that they want to be part of the registry, but they've never even told us they have cancer. So our target and our pool could be much bigger than the 45,000. Maybe didn't tell us. So now hopefully we'll be able to put together this registry. It's our it's a real shift. We've never been in we've always been in advocacy, support, financial assistance, and now we're moving into research.

SPEAKER_00 46:06

It's a it's a, as you said before, even as well, with regards to the genetic side of things and needing to identify those mutations that actually mean something that maybe they were a variant of uncertain significance. And that may have been two decades ago, right? And what does that look like today?

SPEAKER_01 46:21

And also in the Jewish population, one in 40 Jews of Ashkenazi descent carry BRCA mutation as compared to one in 400 in the general population. So that means that Jewish families are at 10 times greater risk for breast cancer hereditary breast cancer, ovarian cancer, prostate cancer, pancreatic cancer, melanoma, and male breast cancer. So I think if we can get a lot of people together in this registry who have similar genetic mutations, we may be able to identify a trend and fit in the bud. I don't know. That's my new target.

SPEAKER_00 46:56

Yeah.

SPEAKER_01 46:57

So I think that the data could really look, we won't know unless we try, right? And the board of directors or sure share is is back is backing this idea. So we feel strongly that if you don't try, you won't know. And it's almost irresponsible to sit on 45,000 pieces of information of people and not try to learn from them in a in a very methodical way. And with AI, I'm hopeful that they'll be able to analyze the data in a in a in more real time. And maybe maybe something big will come out of it. Either way, we'll be touching base with lots of people who've had cancer. You know, things come up 20 years later, there unfortunately there could be a recurrence, or the next generation, or they have a side effect from we know that sometimes they did treatment, and nowadays it wouldn't do that because it could affect a different part of the body. Shar Sherrod will now be there connecting with them again. I mean, these people have been in touch with Shar Sherrod over the years, but now asking them what they might need, we can also improve their quality of life. So I feel like this is a big advantage.

SPEAKER_00 48:00

There's so much to learn. I can't wait to see the the publications that come out of that as well.

SPEAKER_01 48:05

We're gonna be well, I really hope. You know, I'm a little scared because never done it like it.

SPEAKER_00 48:10

Hey, it uh you said early on, it's a business, right? And this is uh an opportunity for the business, it's an opportunity for patients as well. And when you're sitting on a database that large, I agree with you. It it is almost unethical not to look.

SPEAKER_01 48:27

Um agree, you know.

SPEAKER_00 48:31

And recall, they will, they want to.

SPEAKER_01 48:33

They want to. Yeah.

SPEAKER_00 48:34

People who have been through it, as you said, want to share their story. Uh, the patients want to share with industry uh what they feel would be best for for the community. So I completely agree with you that they'll want to participate, and I look forward to seeing what comes from that. Well, my last question for you is the same same question I have for all my guests. I want to take you back to when you uh was that early 20s, I think you had reference when you were saw Rochelle, when you saw Rochelle speak. What would you tell yourself if you got to meet that woman, that Alana, at that at that point in her life?

SPEAKER_01 49:09

Um that's that's that's so hard. I have to think for a second. Um, I think I would tell her that you you can take a little bit of risk. You could take calculated risks. I think when I first was with Rochelle, I was very worried about making a mistake or not doing what everybody wanted necessarily. So we weren't, I think you can take a calculated risk. Like if it's not a dangerous one, and I think that's what we've done along the way with Sharchara, like tried different things, and it's okay, like that's what this registry is. Um, and that one day, while we can't cure cancer, so many women can be cured. So I I think that that's something you don't realize when you started in 2003 or four. Like there's people that are around for 20, 30, 40, 50 years, and and you can be a part of it. It's it's yeah, it's it was really I can't believe that it actually became my career because it was just supposed to be a volunteer, you know, good feeling activity.

SPEAKER_00 50:14

Do something while the kids were at school, exactly as you said, right? Carpool to career, yeah. And look at how many lives you've helped shift in those years. It's absolutely amazing the work that you've been doing, the work that the organization that Shar Sherrett continues to do. Uh, couldn't thank you more for that work.

SPEAKER_01 50:33

The truth is we don't advertise. So this podcast is our form of advertising and really for our privilege platform to educate and share and meet new people is really so valuable to us. We don't want to put our dollars into advertising, we want to put it in education. So this is I love that. Thank you.

SPEAKER_00 50:50

We will make sure that we link to Share Share it um in in the show notes so that folks will have an easy access to get there. Um, we'll also ensure that you are included in the advocate bridge, which is our database of all the disease state nonprofits that are out there serving patients, so that patients have an easier time than Googling. Um they can they can come to a trusted resource and and find all the groups that are there based off of exactly as you referenced, what the the the focus of your organization for those folks that know what they're looking for. And if they don't, at least they can find those trusted organizations to start with.

SPEAKER_01 51:26

So that's amazing that you had that, and it's such a help to the community, and so thank you for that. I really appreciate it.

SPEAKER_00 51:32

It's our privilege. I I wouldn't be here if it wasn't for folks like yourself that are out there fighting for people's health when they don't even know. Um, so I love all patient advocates. You're near and dear to my heart. So thank you again.

SPEAKER_01 51:44

Thank you. Thank you very much.