Congratulations on that. Thank you. You have an incredible story about how you even began to think about this, so tell us about that. Yeah, well, i was adopted, and when i was 35 so 15, 16 years ago i was contacted by my biological parents, who actually had stayed married. And one of the reasons that they contacted me was to give me this medical information. My mother had had Breast Cancer twice, and she found out that it was caused by the brca mutation, which meant that i had a 50 chance of inheriting that mutation. Wow. And so when you heard that, what did you think . What did you do . Well, you know, i knew that it most seriously affected women, and i had a daughter who was two, and that it would be something that potentially she would have to deal with later in life, but i assumed like Silicon Valley people, i was very optimistic. I figured theyd have this bug fixed in the version of humanity 25 years from now, so i didnt really think that much of it at first. But later it became more significant. And then you decided to take some really drastic action yourself not surgically, but financially. Right. So, i didnt even get tested for another 10 years, and then i found out i was positive. My daughter was older. I had a second daughter and a son, and i realized that this could really have a significant effect on my family, so it was personal, and as i thought about how i wanted to take some of the success ive had and use it philanthropically, this was sort of an obvious choice. And you and your wife both have cancer on both sides of the family . Yeah, even in my adopted family and my wifes family, so we were already involved in cancer research. But to take some of the focus of my energies really towards Hereditary Cancers and brca cancers was a big decision. So, setting up the foundation thats a huge startup venture, which you were skilled at, but its not easy. And so you have a mission. You have several missions that you want to accomplish. Right. Tell us about that. Well, its true that its actually easy to give money away, but i had a partner someone that lived in town with me who was also brcapositive and had a family that was affected and he encouraged me that we should really build a community and collaborate with other people and other foundations and other researchers. And so thats what encouraged us to go to the next step and create the foundation, you know, the vision of which is eliminating the threat of brca cancers from individuals and families. But you have sort of a call to action. You have several things that you want to see happen. You want Silicon Valley to get involved. Yeah, for sure, and thats one of the most exciting things about starting this foundation in the tech world. Were in an era where we have great tools to analyze big data. Its happening all the time. And as the landscape of cancer has changed, were getting so much data that we can analyze. And so certainly looking at brca individuals and finding out how they may differ and what their risks of cancer are by doing Statistical Analysis of large data sets is something that were super excited about helping with, and Silicon Valley can really help. Theres obviously a lot of expertise. Okay, so thats a call to action right now. Yeah, definitely. You know, if youre interested in looking at cancer from a dataanalytics perspective, please come and talk to us, cause we can connect you with the researchers that need the help. You arent just giving the money away. Youre demanding accountability, so youve made donations to several prominent facilities. Mmhmm. Yeah, we started with giving donations to harvard, stanford, and ucsf. And one of the things that was most important is to foster collaboration, and its actually been great. I mean, these institutions are somewhat siloed, and weve been able to break through some of that. The researchers meet twice a year, and they are making sure that sort of all their ships are sailing in the same direction, theyre not duplicating work, and theyre using the successes from each institution to help really make sort of one plus one plus one equal five. Are you asking for other people to get tested . Absolutely. You know, this is sort of one of the things that i care about when i look at the bigger picture, is how many people have not been tested and how many of them do have Hereditary Cancer mutation. And so we, as a foundation, have funded a family Testing Program in conjunction with color genomics where that test, which is already you know, its been great that theyve gotten the price down to 250 but if youre a firstdegree relative of a person with a hereditary mutation, which case you typically have a 50 chance of having it, you can get the test for 50. Which is so much cheaper than it was just a couple years ago in the thousands of dollars. Yeah, its two orders. Im actually at 100 times cheaper than the tests were when i first learned that i might have the brca mutation. You have three kids. I do. And you havent had them tested. No, kids should be able to be kids, and they assume theyll live forever, and thats how it should be. And theres nothing really that you change in raising your kids. You try to raise them healthy. Women, at age 25, will typically start to have different medical care if theyre brcapositive, and so that, so to me, seems the right time that they have to start thinking about it. But not until then. Okay, all right. Let them have a happy childhood. Exactly. All right, thank you so much for what youre doing. Appreciate it. And, unfortunately, we are out of time for now. All right. Stay right here. Were going to take a short break. When we come back, were going to hear from a patient who took drastic measures when she learned her diagnosis. Well be right back. Welcome back to beyond the headlines. Were continuing our discussion on the brca genetic mutation that can lead to cancer. Here with me in the studio right now is a woman who learned she has the brca1 genetic defect or mutation. Raleigh zwerin is a wife, a mother of two children, and a teacher. She took drastic measures to head off cancer. Raleigh, thank you for being here. Your story is unbelievable. Thank you for having me. Because you have a sister, also, who is involved in this journey, so take me back to the beginning. So, my sister and i were we found out about this brca mutation completely by chance. Theres a little joke that you have going with this, right . We do. We were both very healthy, and my sister was given a free genetic test by a friend, and she didnt really pay much attention to the results of that test until five years after she had taken the test when she went to have her dog dnatested to find out what kind of dog she had. And it was when she looked at her dogs results that she was reminded of her own test and looked at the results then again, more thoroughly, of her own test and saw brca1 for the very first time. So shes saying that the dog made her do it, right . She said, the dog saved us, right. The dog saved you. Oh, my gosh. So when you learned that you both had the mutation, what did you do . We didnt know about what brca was, other than really what we had heard from Angelina Jolie when she shared her story back in 2013. So it was when we first discovered this mutation that we really threw ourselves into research, and i Read Everything i could on the internet, we spoke to doctors, and it became clear very quickly that there were two options we could be screened closely, or we could have preventative surgeries to reduce our risk of cancer. And you were over 40, so after and you had children. So, we both have children. Both of us have two children. We learned about this mutation when we were in our 40s. Uhhuh. And i knew that the doctor said we have a 40 risk of getting ovarian cancer, a 76 or more risk over a lifetime of getting Breast Cancer, and the screenings werent necessarily going to be very effective. So all of that helped you make your decision. There was no we knew that there was no other option but to have surgery. The choice was very clear. And so we call it prophylactic surgery. Correct. So, with the mastectomy and also ovaries. Correct. And fallopian tubes removed, which means early menopause, that the women dont know how difficult that is. Right. How was your family during all this . They were part of the reason that made this decision, i wouldnt say an easy one to make, but made the decision so clear, because they were incredible support. We both have amazing spouses and children and families who were all in favor of us going through this drastic surgery to take care of our health. And i know that you timed it so that each of you could take care of each other. Right. Which is so loving. We had four surgeries altogether two each and we staggered them so that we could be there to take care of each other and our families could be there to take care of us, as well. Wow. What a journey for both of you. And then, so that was just in, what, 2015, right . That was in our last surgery was in 2016 in march. In march. And then, youre doing okay, but something happened to your sister. One of the remarkable parts about this journey was going through these procedures with my sister, and we were in lockstep all the way through until this past february. She took a ca 125 test, which is a tumormarker test that my doctor recommended that i take. And so i gave her that information, and so she took that test because of my doctor. And it was when she took that test that they found elevation in her tumormarker numbers. She had a ct scan, and they found several masses in her abdomen, and shes currently undergoing chemotherapy. Shes doing really well. Thats good to hear. Yeah. So, you thought in your heart that you did everything right, and when you look back on it, you made the right decisions. There is no question we made the right decision. I know that this surgery helped extend my life, and i know that if my sister hadnt have been proactive about her own health, that her cancer might have been too advanced to treat. Wow. And as far as having your kids tested and her children tested, what are your thoughts about that . Weve been told by numerous doctors to wait and to let the children grow up and not until maybe my daughter was in her mid20s and my son was maybe mid30s or 40 before theyre tested. Well, i wish you and your family all the best. Thank you so much. Thank you for sharing your story with us today. Thank you. All right, and we do have to take a break. Coming up next, meet an oncologist who tested positive for the brca gene mutation. Her story, and find out who is most at risk of having the brca gene mutation and their options for treatment. Stay with us. Well be right back. On the only bed that adjusts on both sides to ultiyour ideal comfortweek your sleep number setting. And snoring . Does your bed do that . Its the final days of ultimate sleep number week. Save 50 on the ultimate limited edition bed with adjustable comfort on both sides. Ends monday. Visit sleepnumber. Com for a store near you. Welcome back. Were talking about the brca, or braca, gene mutation. With me right now in the studio is dr. Pamela munster. She is the coleader of the ucsf helen diller comprehensive Cancer Centers center for brca research, and shes a practicing oncologist. Youre also a mom, and you developed cancer. I developed an early form of cancer, and i didnt have a family history. And i dont come from a background where one would necessarily think of brca, but my cancer my ductal carcinoma in situ looked so unusual that i thought, this looks more like a brcarelated cancer, so i got myself tested. And, you know, i can really speak to the challenges and difficulties that people have to get tested and how much work we have to do to undo this. Did you take any other measures when you learned . Anything else that you had to do . Yeah, i had what a lot of women with brca mutations go through i had bilateral mastectomies because of my diagnosis, and then i had prophylactic refractomy. However which means . Explain that for the layperson, please. So, i had to take my ovaries out at a time where i was still premenopausal with having ovaries that were actually functioning, which was not quite as easy as, like, a as i learned, you know, its a lot easier to prescribe medical treatments than having them. Of course. Now, you mentioned that you werent in the highrisk category, so who is at risk for having the gene mutations . You know, historically, we always thought the gene mutation is limited to a certain population, and the most commonly associated population would be the ashkenazi jewish families. But more and more we learn that thats actually not true, because theres many other folks have a brca mutation, and probably at very similar penetrations. So i think the testing needs to go way beyond a certain population, and i think pretty much anyone could be at risk. Anyone can be at risk. Anyone could be at risk. I had no family history. Now, your center has a very specific mission, and it was you got a generous donation from evan goldbergs foundation, as well as other people. What is the focus of the center, and how do you help people who think that they might be at risk . So, i like to look at brca as a problem in three segments. Like, my father has pancreatic cancer, who needs treatment for metastatic brcarelated cancer, so we know these treatments are very specific and very different probably more effective. My fathers four years into his metastatic pancreatic cancer, which im very happy about, right . Then for people at my level, we hope that we can do with prophylactic surgery. Riskreducing surgery can remove ovaries, the breast. We can do good screenings, solid screening say, for men, we can look at their prostate, their risk for pancreatic cancer. So were hoping we can prevent cancer from happening. But my bigger hope is that i can tell my children if they test positive that they dont have to worry about brcarelated cancer, that we can either prevent the mutation from being passed on altogether, or that they dont have to do drastic surgeries. It is my pledge that my daughter will not have to do a bilateral mastectomy to not have a cancer. Now, you did talk about this with your daughter. She cant help but hearing you, or going through with you what you went through. She is aware that probably before women are 30 or 35, they probably dont have to do anything. I really would like women to get through childbearing and young adolescence before doing drastic procedures. I think its okay to know, but as i said, my pledge is and with the generous support of many of our supporters, including evan and the brca foundation that we really can eliminate this mutation from the gene pool and cancers associated with it. Its a tall order, i know. It is a tall order. Do you have a time frame on that . I mean, its my daughters 13, so yes, im kind of like in a time pressure. Right. Clock is ticking for you. Clocks ticking. For people who are worried, though, that this is just hanging over their heads, what would you recommend . I think a lot of effort we are doing in the brca centers also, like, why is it that some people have a brca mutation and they dont have cancer . What is it that they do differently or have differently . So i think tapping into more of, like, are there environmental factors that are crucial . Or we need to look at vaccination, exercise, diets, vaccination . Theres so many things we can actually start researching on. And thats where we need all the support we can get, and that the support of the brca foundation and other foundations been like invaluable for us. Well, i hope that we can also be a resource for you. Thank you, doctor, for being here and for what youre doing. Youre welcome, and i really want to put the word out this is not a disease of limited population. This can happen to anyone. Thank you, doctor. Thank you. All right, we will be back in just a moment. We will be back with an organization that has partnered with the brca foundation to offer brca gene testing at a very low cost. Find out how it works. Welcome back. Were talking about the brca or braca genetic mutation and whether or not people should get tested for it. Joining me right now is lauren ryan. Shes a genetics counselor for color genomics. Lauren, thank you for being here. Thanks for having me. We have all kinds of fun things to look at here. This is the color test kit. And im gonna show the inside of that in just a moment. But what does this test do and what does it cost . The color test is a 30gene test including brca1 and brca2 to help women and men understand their risk of developing Hereditary Cancer. And the cost of the test is 249, which is significantly lower than the cost of testing even just a few years ago. And i remember hearing it sometimes that ran into multiple thousands of dollars. Thats correct. So, how are you able to make it so affordable . The color test combines a lot of software efficiencies. And by marrying 21stcentury software with expertise in data science and medical genetics and design, were able to offer the testing at a much lower cost. And i know that the Evans Foundation is also partnering with you. Thats right. To bring that cost down even significantly lower. Exactly. Were so lucky to partner with the brca foundation to be able to offer testing to the people who are really at the highest risk people who have an immediate Family Member with a mutation already identified in one of these genes. They likely have a 50 chance of testing positive for that mutation. And so, with our partnership with the brca foundation, were able to lower the cost even further, to only 50. At 50, thats probably within a lot of folks reach. And then i just read something recently that perhaps several Insurance Companies will also consider paying for the cost. Thats right. Thats exactly right. So, well be partnering with Insurance Companies to help cover the cost of testing for other individuals or who may not even be able to afford 50. Okay, so, i would like to take the test. Great and im gonna take the test. Im not gonna it requires spitting. Im not gonna do that on tv. But show me the all the tools here weve got. Its pretty easy, right . Absolutely. And it only takes a few minutes. So, inside the test is a small, plastic box that has a saliva tube inside. And its got a funnel on the top. So, it looks like a large tube, but its actually a very small amount of saliva. Theres a false bottom in there. So, its only one milliliter. And so, you wait 30 minutes after eating or drinking anything, even water, and then you just provide the saliva through the funnel up to the line where it says fill. Thats a lot of saliva. Its a very small amount, actually. If you look, its just one milliliter. Its very small. And then youll close the top, youll hear a click, and some preservative fluid will fall through and mix with your saliva to keep it stable in transit. Then you put it in a little bag. Exactly. You put it in a little bag, pop it back inside the box. You can throw Everything Else away. And theres already a returnshipping label on the back of the box, so you just put it in your mailbox and it comes back to the lab. So, the scary thing would be for people who learn that they might text positive for a genetic mutation, how do you deliver that news, and what services do you offer to help them get through this . Yeah. Its true that genetics testing is a very personal decision, and it often involves a lot of emotional factors. And its important to be responsible with the genetic information. So, included in the cost of the color test is a consultation with a genetic counselor myself or someone else on our team to help you understand the results of the testing and answer your questions, and also direct you towards resources in your local area to make sure that you know what your next steps are. Is it a doctor or a genetics counselor . Genetic counselor. And now, what is there such a thing as a false positive . The chances of a false positive are very small. Its Industry Standard to actually, if we find a positive result to send your dna for secondary confirmation using another type of genetictesting technology to make sure that weve actually doubletested your sample and found the same result. And that really helps bring the risk of a falsepositive result to a very low level. People sometimes feel that theyre helpless in this situation, right . Its true. So, you can help them get through that. Yeah, i think theres something about what we find in our dna feels its really not in our control any more than the color of our eyes or the color of our hair. But i actually see this information as very empowering. If you can learn your risk of developing cancer in the future, you can take action now to try to reduce those risks and increase the chances of early detection. And it can even be lifesaving. Lauren, thank you so much for all this help and information. I appreciate it. Thank you. All right, and thats gonna do it for us. Now, if you decide to get tested, please let us know. We have so much information to share with you. And, by the way, im gonna post my results on my facebook page. So, go to our website abc7news. Com community. Were also on facebook at abc7communityaffairs, as well as cheryljenningsabc7. And follow me on twitter cherylabc7. Thanks so much for joining us. Have a great week. Well see you next time. Live where you live, this is abc7 news. A gusty, gray and soggy sunday. Some areas could even see a thunderstorm. By the way, youll find all this out when you take to the road today. We are on storm watch tonight, anticipating a second wave of wet weather to blow into the bay area. This was the drive on highway 101 in san rafael. The rain started this morning in the north bay