Special Episode: Lawrence Ingrassia & A Fatal Inheritance

00:00:44
Speaker 1: Hi, I'm Aaron Welsh and this is this Podcast will Kill You. You're listening to the latest episode in our tp w k Y book Club series, where I bring on authors of popular science and medicine books to chat about their work, the stories they cover, and the inspiration behind them. We have featured some wonderful books so far this series, and if you'd like to check out the full list of book club books you're in luck, head on over to our website This Podcast Willkill You dot com. Find the Extras tab and then click on bookshop. That will take you to our bookshop dot org affiliate page, which has a bunch of podcast related lists, including a book club list that has all the books from this season and past seasons. And if you have any book suggestions, episode topic suggestions, or just other thoughts you'd like to share with us, please reach out using the contact us form on our website. Two last things before moving on to this week's book, and that is to first, please rate, review and subscribe if you haven't already, it does help us out. And secondly, you can now find full video versions of most of our newest episodes on YouTube. Make sure you're subscribed to exactly Write Media's YouTube channel so you never miss a new episode drop. Stories of scientific progress and discovery often portray scientists armed with facts and data, triumphing over death and disease. It's a forward march with a clear narrative arc from a place of ignorance to one of enlightenment. And as much as we love tidy stories like these, science rarely happens that way. More often than not, it's a battle, with each hard one inch of progress contested and dismissed before it's accepted. Or it's a promising hypothesis that turns into a wild goose chase after years of time and resources have been spent. Maybe it's simply making slow incremental headway on a puzzle. This zigzag two steps forward, one step back nature of scientific progress rarely makes it into the polished final product, Nor does the human cost. Those whose lives ended prematurely because science didn't yet hold the answers, and their grieving families who were left to mourn this painful loss. These crucial elements are a feature of this week's book A Fatal Inheritance, How a family misfortune revealed a deadly medical mystery, by author Lawrence and Gracia, part memoir and part medical thriller. A Fatal Inheritance takes readers through the riveting story of how two doctors, doctor Frederick Lee and doctor Joseph Fraumani, uncovered a key piece of the cancer puzzle, the P fifty three gene when a family suffered heartbreaking loss after heartbreaking loss to cancer. For Ingrassia, this is a deeply personal story, as his own family has been tremendously impacted by cancer, losing his mother, two sisters, his brother, and a nephew to different forms of this disease. When faced with such devastating loss, it's natural to ask why me, why our family? But what if the answer brings you knowledge without a way to use it. In A Fatal Inheritance in Grasia grapples with this question, and by doing so so illustrates that knowledge can be both a blessing and a curse. But with continued support for scientific research, we can turn that knowledge into interventions that save lives and prevent heartbreak. Through his meticulous research and compassionate writing, in Gracia leaves readers with a deeper appreciation of the human experience of cancer research and how vital it is to not give up hope. I'm very excited to share this conversation with you all, so let's take a quick break and get into it. Larry, thank you so much for joining me today.

00:04:56
Speaker 2: It's my pleasure eron your book.

00:04:59
Speaker 1: A fa Inheritance. It strikes this really beautiful and delicate balance between medical mystery and memoir, with these two stories ultimately converging as that mystery is unraveled. And not only do you showcase this truly transformative period in cancer research, but you also place it in a human context by discussing your family what initially set you on the journey to write this book.

00:05:25
Speaker 2: You now, my brother died a few years ago, and when he died, he was last surviving member of my family. And my mother had died of cancer breast cancer when she was forty two. I had two younger sisters die of cancer. One had an abdominal cancer she died at twenty four, the other had lung cancer died at thirty two. And my brother had a son who had his first cancer when he was just two years old, and he died of his third cancer at age thirty nine after a desperate attempt to save his life by amputating his leg and hip. So I just wanted to know more about this rare genetic condition that had wiped out my family. I knew very little about it. It's called lead from any syndrome, and all I knew at the time my brother died was that it was caused by a mutation in a gene that normally prevents cancer from occurring, and that was kind of it. And so I just began this journey. I googled, and what I saw initially just piqued my interests. And that's how it began. Not with a plan initially to write a book. In fact, I say this was not a book that I ever intended to write, but once I began, I knew I was meant to write.

00:06:51
Speaker 1: When you knew that this is a book, this is becoming a book. Did the shape of that book or the outline sort of change shape as you put it together, or did you have this vision sort of.

00:07:01
Speaker 2: All along Once I finally decided it took some months of research before I said, yeah, I think this is a book. I had in my mind's eye how this would intertwine, that it would be a story about my family and families like mine who had really been devastated by this hereditary cancer condition, along with the story of the researchers, dedicated researchers who spent years, actually decades before they solved the mystery. And that actually was part of the thing that intrigued me about the book and the whole condition is just how long it took to figure this out. But initially it began, actually, you know, kind of with this search and finding out that this was a rare condition. It was very proditious families that had it. There were a lot of cancers at young ages, all different kinds of cancers too, which is a little bit different from a lot of cancer condition. And I saw that one of the two researchers who this is named after and who led the effort to solve this medical mystery, Joseph Browmani Jr. Was still alive. He was in his late eighties, and his colleague Frederick Lee had died in twenty fifteen, and so I reached out to him, and I got even further intrigued when I talked to him.

00:08:23
Speaker 1: Let's take a quick break, and when we get back, there's still so much to discuss. Welcome back, everyone, I've been chatting with Lawrence and Gracia about his book A Fatal Inheritance, How a family misfortune revealed a deadly medical mystery. Let's get back into things. You mentioned your journalist's background. You're no stranger to investigating stories and putting these stories together. But this was a very personal story for you as well. How was that process different?

00:09:09
Speaker 2: Well, And first of all, I was a business journalist. I wasn't a science journalist, so I had never written about anything really personal about my family. I called this a journey of discovery and connection, and it was difficult at times, but also so rewarding. I think I learned more and I feel closer to my family now that I have done all this research. And at the same time, I wore a different hat at different stages in the reporting, where I was just trying to understand the science, trying to make sure I got it right, the genetics because it's so much about genetics, trying to understand the history and the evolution of the understanding of cancer and the causes of cancer, because that really has changed over the decades since my mother died. And then try to make it a compelling story instead of a dry textbook story because in the end, this is about families. It's about families like mine, and it's about loss, but it's also about love. In fact, I call this you know, the book is as much a love letter to my families and families like mine as it is a book.

00:10:21
Speaker 1: I mean, that shines through so so very clearly. I felt like I knew some of your family members by the end. I really loved that aspect of it. And it's also so clear how much research went into this in terms of placing these discoveries in the broader context of what was happening in the history of medicine at the time. And I was wondering which sources you found to be particularly influential or helpful in this process.

00:10:51
Speaker 2: First of all, doctor Fraumeni was exceptionally helpful, But doctor FROWMENI had a lot of colleagues. One of the things I learned about science and scientific discovery is that there's really one person who does it all. It's often a team of scientists working together and sometimes working in competition, who push knowledge forward. So there were a lot of his colleagues weremer colleagues who were extraordinarily helpful, and also there were competitors who were working on some of the same efforts to try to identify these genes and what they were doing and what the mutations might be doing. But in parallel, I also was helped extraordinarily by the family that was the focus a lot of a lot of the early research. This family was so central and so helpful when I was finally able to reach them and they really opened up, and I mean, to me that was critical to telling the story of the medical mystery. Because my family wasn't a focus of the research. We learned about the condition and the mutation in our family decades later. This family kind of was focus on the research from the beginning of Liam fromeding.

00:12:09
Speaker 1: I want to talk about this family and sort of the contributions that they made, But first I want to take a step back and get this landscape, bird's eye view of what cancer research was like at the time when this first family tree was being looked at. What was known about the cause of cancer and what were some of the prevailing hypotheses.

00:12:29
Speaker 2: Okay, so let's go back to the nineteen sixties, and you really have to go back to that period of time and cancer was not talked about a lot, right, kind of hush tones, and I think one of the reasons is that the prevailing theory at the time was that most cancers were caused by viruses. If you think about that for a second, if cancers are caused by viruses, you maybe can catch cancer, so you don't really want to talk about it a lot that you have cancer in your family. Now, there were inklings that there might be environmental causes of some cancers, and there were some thinking that maybe certain types of cancers, especially site specific cancers, like if you had a lot of breast cancer in your family, maybe maybe that might be hereditarian in some way, although we don't really understand it. However, all the cancer experts believed that the vast majority of cancers were caused by viruses, and most of the government research money was actually targeted efforts to identify viruses. Now, they weren't having any luck in doing that, but they kept spending and looking for that and a long comely and Faumini epidemiologists who are just curious about cases that are unexplained. They were young scientists at the National Cancer Institute. This is back in the mid to late sixties.

00:13:51
Speaker 1: When you say these were epidemiologists looking at patterns of cancer. What were they looking for and what were the cases that were catching their attention.

00:14:00
Speaker 2: Well, I think they were particularly interested in childhood cancers. But what happened was in nineteen sixty seven they came across a very unusual case. There was a father who was then twenty th year olds old who had leukemia, and months later, his ten month old son developed a soft tissue rab though myosarcoma in his arm. Now, either of these cancers, the odds are very high against having having them father and son the same family. I mean, it's astronomical. And so they were curious, like, maybe we should take a look into this family. And when they began looking in this family, with the help of some of the family members, it was difficult because this is a sprawling family, you know, as many families in the United States, they're all over the country. They found a history of cancer, all kinds of cancers in all ages, including other cancers among infants, going back five or six generations, and that was where they said, hmm, let's see if we can find a cause, and they published a paper a couple of years later. It actually took quite a while to put together this family tree because they had to write to medical centers and get medical records, and it just it took an enormous amount of time, and they added a few more families to the study, and they showed that there was a lot of cancers. They didn't know exactly why. In fact, their first paper that they wrote about it ended in a question mark that said, is this a familial syndrome? There was skepticism. The cancer experts said, ah, must be a virus that you just haven't been able to identify, even though they had tested some tissues or viruses and hadn't been able to find anything. Or maybe it's an environmental factor that you haven't been able to identify, or you know what, Actually, more likely it probably is just chance. I mean, you know, there are a hundred million plus families in the United States. The odds are that are few are going to have a lot of cancers, and this just happened to be one of them. Lean fraumaning I said, Okay, look, we can't prove it, and they actually acknowledged that it could be one of those things, although in their minds they were doesn't feel right. So they kind of said, we're not really so sure about that either.

00:16:19
Speaker 1: Eventually, this work seemed to build momentum and there was more and more data that supported this hypothesis that maybe these cancers there is some sort of genetic or hereditary link to it. So what else were they finding and how were they finding these other families.

00:16:36
Speaker 2: After their first paper was published, they got a little bit of attention and other doctors who were coming across families would send them this information. So Lee and Fraumani began tracking more and more families over time that were cancer prone, and every five to ten years they would publish another paper saying, we're finding more and more evidence that indeed, these cancer prone families are continue to have a high rate of cancer. One of the things that puzzled everybody, including them, but definitely the experts was the fact that just like my family, there were all sorts of cancers, brain cancer, leukemia, you know, soft tiku cancer, lung cancer, breast cancer, bone cancer, and so the experts were like, these aren't related. How could that be hereditary? Again, it was it was against whatever knowledge existed. You know, even in cancer prone families, cancers occur sporadically. It's not like they occur at regular intervals. There was more than a decade between my mother dying of cancer and my youngest sister then getting a cancer. That was another thing that made it hard to speed up the research. But the understanding of genetics was increasing dramatically in the nineteen seventies and the technology that enabled scientists to look at individual genes and to study genes and find mutations. There also was an explosion in that equipment, and the combination of these things was critical. And the fact that Liam Fralmini kept studying families so they had a bigger pool of families and very smartly going back to the late nineteen sixties with Family A, they collected tissue samples. So when they finally had the tools to examine the tissue samples to look at individual genes, they could spot something that a decade or two earlier, and certainly in the nineteen sixties, would have been impossible.

00:18:48
Speaker 1: And so there was many steps that had to be taken between recognizing this pattern in this very first in Family A, all the way to this becoming a named syndrome. What kind of led to that those final pieces being put into place that led to leaf from any syndrome being this clinical syndrome that can be defined and characterized.

00:19:09
Speaker 2: So in the late nineteen eighties they finally had the tools to look inside the genetic makeup of these cancer families. Of course, humans have more than twenty thousand genes, you know, kind of where do we start looking? I mean it's like, you know, kind of it's like saying, hey, it's somewhere in Manhattan, but you have no idea where the address is. You know, kind of there are millions of homes. So figuring that out, you know, where do we start looking? And this is a little bit where where the knowledge of other scientists helped them start focusing on where to start looking. So they had a few spots where in studies of mice that they had found a particular gene that seemed to be present in many tumors. It's gene called P fifty three, and actually thought that this P fifty three must be a cancer causing gene because it is so common in cancer's not all cancer tumors, but actually in more than half of cancer tumors. They found a mutation of P fifty three, So they began focusing on P fifty three, and once they started looking at the tissue samples of these family members. After a couple of years of study, they had their Eureka moment. And the Eureka moment was that in the tissues of the family members that had cancer, there was a mutation in P fifty three, and that in the tissue members of family members who did not have cancer and that same P fifty three gene there was no mutation. The other Aha moment was they realized that fifty three wasn't causing a cancer. P fifty three is normally meant, and when it working properly, it stops cancer from occurring. When we all have our cells are dividing all the time, and most of those cell divisions are benign. Nothing happens occasionally some of them are potentially malignant. And the amazing thing about the human body is that over millions of years of evolution, we have developed genes called cancer suppressor genes that are kind of search and destroying genes. They sense potentially cancerous cells and they go and either repair that cell or they kill it so you don't get cancer. But if you have this mutation, they realize it doesn't work properly, and your propensity, your chances of getting cancer are much higher, and this explains so much when they finally realized it. First of all, talked about how pernicious this is. By age forty, if you are born with this mutation, this inherited mutation, you have a fifty percent chance of getting cancer and often multiple cancers if you survive your first one versus five percent in the whole population as a whole, ther risk is ten times higher. But it also explained why you would get cancers throughout the body. This P fifty three, it turns out, was so important that it protected you from cancers throughout the body, except when it was mutated, it didn't. And this is in contrast to most cancer genes, I mean, everybody. Probably the best known cancer gene is the brack of cancer gene, which helps you prevent you from getting breast cancer and ovarian cancer and stuff, but it's really a site specific. P fifty three is a much broader gene and protects your whole body. And actually, since this discovery, and it was in late nineteen ninety when it was announced, it was huge news, huge news in the scientific world, not in just as scientific world is the front page you know of the New York Times of Wall Street Journal had a big story. I mean, it was electrifying in the scientific P. Fifty three has become the single most studied gene in the human body, and it's called the guardian of the genome because it regulates cell growth and kind of helps prevent you from getting cancer.

00:23:20
Speaker 1: Let's take a quick break here. We'll be back before you know it. Welcome back, everyone. I'm here chatting with Lawrence and Gracia about his book, A Fatal Inheritance. Let's get into some more questions. I mean, the discovery, and you illustrate this so clearly in your book too, that this discovery was revolutionary for understanding the mechanism underlying so many different cancers. And it's fascinating to talk about how, okay, this guardian gene can get disrupted in our germline cells, but then also there can be disruptions later on. And so how did this sort of change our understanding or help us to formulate this two hit hypothesis.

00:24:16
Speaker 2: There are two kinds of mutations. When is a germline mutation, that is something that you're born with, you're inherited, Okay, so it's in every cell in my body. So also what's called a somatic mutation. It's like a sporadic mutation. So again our cells are dividing constantly and mutating constantly, And even if you don't have an inherited mutation in P. Fifty three, if you have this sporadic spontaneous mutation post birth in P. Fifty three, that breaks down your body's ability to fight cancer, which explained why you've had so many cancers with P. Fifty three mutations, even in people who didn't have an hereditary syndrome. So you know the understanding of how this mechanism works help doctors start saying what can we do to try to target medicines to help prevent cancers. Now, of course that's turned out to be very difficult because fixing P. Fifty three or any other mutation is very difficult. But you can have the ability to look for that mutation. This was one of the breakthroughs. If you know that you have that mutation, you can scream for cancers and try to catch them early. And the best defense against cancer is to catch it early, and so this was one of the great advantages of learning this. And it doesn't stop you from getting cancer, but you can identify it early on. If you know that it's in your family, it can help you live a much longer life.

00:25:45
Speaker 1: Great be a little bit proactive in some respects, even though we may not have a direct treatment or cure for the underlying cause. Right when lee Fromini syndrome was named and described, and when this p. Fifty three discovery was made, I'm curious to know the impact of these developments on the families themselves that were involved in these early family trees, this early research. What did it mean to them to have this answer.

00:26:14
Speaker 2: I think the most important thing is that they finally knew the cause. I mean, for a long time, the family members are dying, they figure something must be wrong. For a while they thought it might be environmental. Knowing they had it was I wouldn't say a relief, but when you're looking for an explanation, knowing is something that is very healthful. But kind of go back to the nineties, especially in the early nineties, where they're saying, Okay, now we know this, what can we do with this? And early on there wasn't a lot they could do it. We could do more research to try to figure out what we can do with this, and I think so for the families particularly Family A was helpful to know this, but it was like, you can't help us now that you know this, and they were like, well, no, but we're hoping that we'll be able to help you some point in the future. So I think it was it was hard for them. In fact, so not long after the discovery of P fifty three and this is the cause of leefrommini syndrome, all these cancers in your family, one branch of Family A A father got brain cancer. He was in his early thirties, and within a year his ten year old son also got brain cancer, and they both died within the year. Nothing could be done to help them, and I think so some of the family members felt, maybe I don't want to know. I mean, some of them did want to get tested to know that they had it and figure out what to do, but other family members were, you can't help me if I know it, So, you know, they kind of pulled back a little bit, and I think that's understandable. So the other thing is, if you have this mutation in your family, there's a fifty to fifty chance of each child inheriting it. So you have branches of the family that are riddled with it because it was passed on, and then you have other branches of the family that are cancer free, which is also difficult and can cause pain and tension within families too, And I think that was part of the reason why some of the family members just felt come back to me and let me know when you can you have information that this can help me, as opposed to just scare the daylights out of me and be worried all the time that I'm going to have cancer.

00:28:25
Speaker 1: It is certainly a dilemma in many in testing for many different genetic diseases and disorders. What do we do with that knowledge? What does that knowledge give us? And some people may feel empowered by that or like you said, it can help with screening in preventative ways, but ultimately does it change an outcome. It's a hard thing to weigh.

00:28:46
Speaker 2: It's a very personal decision. And while I think that knowledge is power and you want to know, I also understand why some people say, hey, I think I'd prefer not to know.

00:28:58
Speaker 1: Yeah, I absolutely can understand and both perspectives. And I'm curious to know when did you first learn about LEIF from Anie syndrome.

00:29:07
Speaker 2: Let's go back again to nineteen ninety, and this discovery big news. By that time. My brother and I were both senior editors at the Wall Street Journal. Our two sisters and mother died, and his son had had cancer. I don't think we ever talked about this discovery, and it was odd we didn't say, oh my god, that must be us. The reason is, I think there were a couple of reasons. First of all, our father was a research chemist, and we had this supposition for a long time that he must be inadvertently coming home with tiny particles of chemicals on his clothing. We're adjesting it years later this ends up being cancer, So we had our theory about what was causing the cancer. And the other thing is that doctors never suggested to us that it might be hereditary. For a long time. LEI Fromani syndrome is so rare. All the cancers are different. A lot of doctors weren't aware of it. They certainly wouldn't have suggested it. And another reason they wouldn't have suggested it to us is that our mother was the first in our family to have cancer. There wasn't a long history of cancer in our family the way that there was with family a so fast forward in two and fourteen, my nephew had had his second cancer. My brother had had another couple of cancers. Fortunately they both had survived those, and his doctor finally said, you know, you've got this pattern. It might be hereditary. I think you should get tested. My brother called me up, and this was the first I'd ever heard of P fifty three or leefrow mini, although I didn't do anything about it, and he said, I'm going to get tested for this mutation and sure it up. A month later, twenty fifteen, he sent me a note saying I tested positive, and he said, you know, actually it's a relief now I know, and he had caught all his cancers early, but then he's started to do even more rigorous screening. I didn't immediately go out and get tested. I was that point in my early sixties and I was figured, I don't have anything to worry about. But my daughter. I've two children. My daughter finally prevailed on me and says that Dad, you really should get tested. I want to know. So it turns out that there is a value of knowing. I didn't really realize this at the time, but if you have lee from any syndrome, you have this inherited P fifty three mutation. There's a ninety five percent chance in your lifetime of getting cancer staggering, but there's a five percent chance that you won't. So I could have been a carrier. I could have the mutation but being that five percent and still have passed it up. So the value in getting tested was having that certainty. So I got tested and tested negative for the mutation. So this also explained why I had been spared while my siblings had not. And I distinctly remembered and it was just one of those moments that you never forget. It's etched in your memory. I sent an email to my brother and said, I tested nuggative and again, it can be hard for some family members to know that they have it, and his son had cancer and that other family members don't have it. And I've seen it. It causes strain and it's understandable. That's not unusual or abnormal reaction. Actually, instead, my brother sent me back a two word email response with explanation points great news. He was happy for me. He never said why me, why not you? This is not fair? You know, people ask me a little bit, do you feel survivor's guilt, and for whatever reason, I don't think I feel survivor's guilt, or at least it's not heavy on me. And I think there are two reasons. One, I guess I'm rational enough to say this is genetics. There was a fifty to fifty chance for me to get this. I didn't get it. And the other thing, I think I probably would have felt a bit more survivor's guilt if my brother had to react in a different way. And so that was another of those ultimate brotherly love things that really kind of helped a lot in this journey.

00:33:09
Speaker 1: As you write about, you two had this really special and best friend relationship. But I'd love to hear more about this relationship that you had with your brother.

00:33:19
Speaker 2: We're both journalists. He was at the Walls Sat Durro many years. He went a prol surprise for his coverage of the auto industry. I've been lucky to have a great career too, And I think kind of the fact that we worked together and knew a lot of the same people. In fact, it's funny a lot of siblings have friends in childhood who are the same friends. We played different sports and we did different things, even though we're two years apart. We didn't have a lot of friends in common in childhood, but in our adulthood we have a lot of friends in common. So I think that was one reason that we were particularly close, and I think inevitably close, because we lost our mother and well our sisters. Our father also died at pretty young, he was fifteen. Although he didn't have cancer, he had a heart condition. You know, when you're the last surviving member of your family, you've got those shared memories, So you think about it. Your oldest memories, your longest memories are from childhood and growing up together, and so I think there's a combination of that our loss being in the same business very close. In fact, I write in the book, occasionally all come across people who say that they are estranged from their siblings, they haven't talked to their siblings for five or ten years, or only see them on rarest occasions, And I'm like, do you know how lucky you are to have your siblings. I mean, most people I know have either all or most of their siblings. At my age, I don't have any of my siblings, and it just it really kind of pains me and you know, I've had a couple of people after reading the book reach out to me and say, you know, I've read that and I've reached out to my sibling and yeah, I thought I was right and they were wrong or whatever. But I realized that in the end, and that doesn't matter. What matters is that we reconnect. That's been one of the unexpected but nice side effects of writing the book.

00:35:12
Speaker 1: You paint such a beautiful picture. It's such a clear picture of your siblings and of your mom as well, and your experience with watching them and being witnessed to their illness and then ultimately them passing. And I felt like I knew many of your siblings just from the beautiful way that you wrote about them, and I was wondering if you could tell me a bit more about your mom and your sisters. And there's one moment in particular in your book that really has stuck with me so much, which is when you were reaching out to your sisters one of your sister's doctors and he remembered her right away.

00:35:47
Speaker 2: My sisters died in the nineteen eighties, it's four decades ago, and I wanted to know more of Obviously, I knew a lot about it, but I wanted to talk to their friends to figure out from their perspective. And one of my sisters have been marriage. She didn't have any kids, and this was again feeling of closeness. So one of my sisters, Gina, who died at thirty two, kept a diary from the time that she'd learned about having cancer till the time she couldn't anymore and she died within about six months, and reading about her hopes and fears. Initially starting out very hopeful that this could be overcome if only she would fight it strongly enough, only she had enough will power. I mean that was hard to read because knowing what I know now is like it had nothing to do with whatever will power. So only she was putting out on herself to cure herself. And it was like, oh, my gosh, it doesn't have anything to do with that. You have inherited this mutation, that is a deadly mutation. And I definitely was brought to tears. But the moment, probably the single moment, most unexpected and most volunteers was what you mentioned about my sister Angela, who was twenty four when she died. Again, I was hoping to talk to her doctor, and I didn't know exactly who her doctor was. I had an idea. I was talking to my sister in law, who's my brother's wife, and she thought, you know, kind of maybe this was his last name, and I knew he was in Chicago, and so I set up a message on LinkedIn to this doctor in Chicago and said, Hey, I don't know if you would remember, but my sister died of cancer and barely nineteen eighties in Chicago. You were in a collegist then, and I think you might have. I'd like to talk to you if you were, but of course I'm sure you've treated a lot of patients and may not remember her, and we're kind of going back decades. Within a couple of hours, I got an email from doctor Locker and the email subject Climb was I have never forgotten your sister, and I can tell you. I just sat there and my eyes welled up. I was like my breath was taken away. And so Angela, again just twenty four years old before she died, but knowing that she was dying, had arranged to have flowers sent to us, her siblings, to her friends, and to her caregivers after she died, and the flowers arrived with a one word message forward, and doctor Locker had never forgotten that, he said, I've never forgotten that. He says that to this day, I can remember her face, and I can see her, and I can see those flowers, and you know, I thought, what an amazing young woman, What an amazing women she could have grown to be, to have thought to do that at that young age. I mean, it's just kind of remarkable. And you know, I talked to her friends and some of her other friends had received it, and I said, it was like, so so like Angela to do that. I encourage everybody to try to make these journeys of discovery. Talk to your relatives about important times in your life. Talk to your aunts and uncles, grandparents while you can, while you're here. I wish I had done more of that before I wrote this book. But these memories are so precious to me, and I think they're precious to everybody. In fact, can I read just one paragraph from the book? Please? Please? Yeah, because I think it explains a little bit. I wanted to tell the story about my family. It's important to tell a story about these other families. I wanted to honor the doctors, dedicated doctors who again against all odds and being discouraged in doing it. And I was writing the last chapter of the book, and you know, occasionally, when you're writing, a lot of times you're thinking about every paragraph, and you're writing and rewriting, and occasionally something just kind of flows out, and this flows out when I had in the last chapter describing this interaction with doctor Locker and the flowers. When we are gone, we live on in memories. Those memories can remain surprisingly vivid for a long time through the people whose lives we have touched. However, briefly I was moved that doctor Locker still treasured memories of Angelo. But I know memories invariably confade and even be lost when the people whose lives we touched are themselves gone. So while this is a book about scientific discovery begun by two tireless doctors, it is even more a love letter to my family, written to preserve memories for my children and their children and the children after them, because I will be gone someday as well, and I don't want these memories to be gone with me.

00:40:39
Speaker 1: It's so beautiful It's such an important message and a beautiful tribute to your family, and it's so meaningful because what we don't do often enough, I think in science is to humanize these discoveries and show the direct impact that it has on people's lives and on their loved ones as well. And I think that is what you have done so wonderfully with your book.

00:41:06
Speaker 2: Thanks for those words, Aaron. I think these doctors also, I mean, they wanted to make this great discovery, but I think they were driven by what can they do to help people too? And that was really really important. In the intervening years, many of the doctors who worked with doctor Lee and from many have continued their work. You know, what more can we learn about P fifty three? And one of their colleagues, doctor David Maplin, who was very young at the time, helped discover the P fifty three gene. Has created this protocol, this screening protocol that is very valuable in helping to prolong lives. And there is an association, the Lee from Any Syndrome Association that helps families both cope with living with this but also furthering research and so but it is about families. It centers on the families and the doctors who tirelessly, tirelessly kept after this. I don't think we can thank them enough. And you know, the other thing is that I learned that we tend to think that scientific discovery happens like that. It's slow, it's halting, it's often goes down the wrong path before it gets on the right path. It takes time, it takes money, it takes collaboration, and without that, where would we be These families There still is no cure, but they are a lot better off knowing and kind of having the screening protocol and all. And you know, I've heard from so many people that's one of the things unexpected reaching out to me, you know, saying your family is my family. People feeling that they they isolate, nobody understands what we are going through. And I've really been moved by that. Now we can give this book to friends, or our friends can read it and they get a sense of just how devastating this syndium has been for us. And again, it's not a matter if you have this mutation. It's not a matter of if you're going to get cancer, but it's when and how often to get cancer, and so to the extent that I can raise awareness and help these families, that's the most important thing for me.

00:43:08
Speaker 1: Well, I have really really enjoyed chatting with you today. It has been such a meaningful conversation and I appreciate so much you taking the time.

00:43:18
Speaker 2: Thank you, and to all the families, I hope you can persevere and love each other as you go through this difficult time.

00:43:44
Speaker 1: A big thank you again to Lawrence and Gracia for taking the time to chat with me. This was such a moving conversation and so especially important in light of all the cuts to cancer research funding in this country. If you enjoyed today's episode and would like to learn more, check out our website this podcast will Kill You dot com. We're I'll post a link to where you can find a fatal inheritance, how a family misfortune revealed a deadly medical mystery, as well as a link to Larry's website where you can find his other work. And don't forget you can check out our website for all sorts of other cool things, including but not limited to, transcripts, quarantiny, Implicyberrida, recipes, show notes and references for all of our episodes, links to merch our bookshop dot org affiliate account, our Goodreads list, a first hand account, form and music by Bloodmobile. Speaking of which, thank you to Bloodmobile for providing the music for this episode and all of our episodes. Thank you to Leona Squalacci and Tom Bryfogel for our audio mixing. And thanks to you listeners for listening. I hope you liked this episode and are loving being part of the TPWKY book Club. And a special thank you, as always to our fantastic patrons. We appreciate your support so very much. Well, until next time, keep washing those hands. Hum