He lost his mother, sisters, and brother to cancer. It was in their genes.

Later in life, he understood it was no coincidence: threaded throughout his family's DNA was a hereditary cancer gene, vastly increasing their risk of the deadly disease. In this episode of 'The C-Word' series, 'Say More' host Shirley Leung talks to Ingrassia about the moment he discovered the cause, the difficult choice of getting himself tested, and how greater knowledge of family history can lead to monitoring that saves lives.
The following is a lightly edited transcript of the May 22 episode of the 'Say More' podcast.
Shirley Leung:
Welcome to 'Say More' from Boston Globe Opinion. I'm Shirley Leung. This is episode four of our five-part series 'The C-Word: Stories of Cancer.'
For years,
His mom died of cancer in her 40s, followed by his two sisters who also died young. And it didn't stop there.
Cancer kept popping up in the family, like a horrible game of whack-a-mole.
When he got older, he learned it was no coincidence. Threaded through his family tree was a deadly cancer gene.
Science on the genetic roots of cancer has come a long way, and a better understanding can help save lives.
Larry's recent book is called '
Larry Ingrassia:
I was very young when my mother had cancer. She died when I was 15. She was 42 years old. But my memory is that she had breast cancer for eight to 10 years. She survived it initially before she died.
My memory is a bit fuzzy, but I do remember these enduring memories of visiting her in the hospital with my three siblings. I'm the second of four with an older brother and two younger sisters. That was always hovering over us, that she was sick.
But then, she would be fine. Then it seemed like a couple years later something else would happen and she would go back.
It was in the spring of 1968, when I was 15 years old, she was in the hospital and I didn't think much about it because she'd been in and out of the hospital for any number of years.
I was a bus boy at a breakfast restaurant not far from our house in suburban Chicago. I was on a shift. It was kind of late in the morning and I remember my father came to the restaurant. One of the workers said, 'Your father's out back, he wants to see you.' And I was like, 'Oh my God. What's that about?'
I went out back and he said, 'Mom's dead.' And so I was really shocked. Even though she had been ill, I just didn't have any inkling.
Back then, in the 1960s, people didn't talk a lot about cancer, a lot about illness. So it was a real surprise.
A family portrait of Larry Ingrassia (third from left) and his siblings in the 1950s. Three would die of cancer.
Handout courtesy of Ingrassia family
Leung:
Your mom gets cancer and then your sisters. One of your sisters first, then another.
Ingrassia:
It was another decade before there was another cancer in our family, and my youngest sister, Angela, was 23, and she developed abdominal cancer. She died within about six months. She was 24.
And again, it was really a shock. About a year later, one of my brother's sons, Charlie, who was two years old, developed a soft tissue cancer in his cheek.
Now he survived. Again, it was a totally different kind of cancer. The prognosis was not good, but we were lucky he survived.
Another five years after that, in 1987, my sister, Gina, got lung cancer and died about six or seven months later. By that time, we were wondering, 'What is going on?' We weren't sure what was going on. Again, no oncologist said to us, 'Oh, we think that there is something hereditary going on.'
Leung:
You had theories, right?
Ingrassia:
Yes, and I think there were some reasons for this. Our father was a research chemist. We thought maybe he brought home chemicals, tiny particles on his clothing after work. He would pick up the kids when he got home, especially when we were young. We thought that maybe we would ingest it, our mom would ingest it, and then years later, you don't know how many years later because cancer can take very long to develop, it would manifest itself in cancers over different parts of the body.
And it's a plausible thing because there was this growing understanding of environmental carcinogens and particularly chemicals that could cause cancer. We were puzzling over all the cancers in our family. Doctors were puzzling over, not my family because we weren't studied, but similar families and they were also swimming against the tide because there was not a belief that heredity was a major factor in cancers.
And this is where my book begins. In the late 1960s, again my mother died in 1968, which was around the same time, two young doctors at the National Cancer Institute were examining causes of cancer. They were young, they weren't experts at the time. They were looking for interesting cases and they came across a very unusual case.
There was a father who was 23 years old and had leukemia, and shortly thereafter, his 10-month-old son developed a soft tissue cancer in his arm. Both of these are rare, especially at those ages. The combination and the odds are considered astronomical. So these doctors said, 'Wow, maybe we should study this family to find out what's going on.'
And indeed, when they started looking at that family, they found cancers going back generations.
They found many cancers throughout the family, and a lot of young cancers, as well. They found women in their twenties and thirties, but also children having cancers, too. They didn't know exactly what was going on, but they did write a paper published in 1969.
They raised the question of whether there was familial syndrome. This was a seminal paper that turned out to be very important. Interestingly, the paper was published and the experts in the field, who of course were mostly focusing their research on viruses, were highly skeptical.
They said, 'These cancers that you're talking about, they're all different kinds of cancers. What could they have to do with each other? How could that be hereditary if they're all different kinds of cancers?'
To their credit, these doctors, Frederick Li and Joseph Fraumeni, both children of immigrants, persisted. They said, 'Let's keep studying this family and other families.'
A 1991 photo of Frederick Li (l.) of Dana-Farber Cancer Institute and Joseph Fraumeni of the National Cancer Institute discovered how some cancers can be inherited in what is known as Li-Fraumeni Syndrome.
Handout from National Cancer Institute
Leung:
And that's what's known as Li-Fraumeni syndrome, right? And how did you learn that your family had Li-Fraumeni?
Ingrassia:
Okay, so my brother in 1997, when he was 46 years old, developed lung cancer. Again, he was given a low chance of survival.
He had a lung removed and he survived. We were again lucky. But then he had another cancer around 2005. He had prostate cancer. Finally, in 2014, one of his doctors said to him, 'Given all the cancers in your family, maybe you should undergo a genetic test, because I think that the history indicates that you may have
Leung:
This is p53, right?
Ingrassia:
P53 is the specific gene. The p53 cancer suppressor gene protects cancers from occurring anywhere in the body. It's actually called, since it was discovered, the
That's why people who have the inherited p53 mutation can get cancer anywhere in the body. It's not site specific. So the types of cancers are myriad.
There are a handful of major cancers in p53. One of them is breast cancer. Leukemia, soft tissue cancer, skin cancer, colon cancer, brain cancer are a huge variety of cancers that can be linked to the p53 mutation.
Leung:
Going back to 2014, when your brother Paul calls you and says, 'I have this gene. I think I have Li-Fraumeni syndrome.' Did knowing that he had that genetic mutation help with his treatment of his cancer?
Ingrassia:
Yeah. So, what do you do if you have this inherited mutation?
First of all, the inherited mutation, like any inherited mutation, cannot yet be fixed. But if you have the inherited mutation, you know that the odds of you getting cancer are very high. And, also that the odds are pretty high at a fairly young age.
So by age 40, if you have the inherited p53 mutation, 50 percent of people with the mutation have cancer. That's versus 5 percent in the overall population. It's 10 times as high.
Often, as I mentioned earlier, it's children. It's really sad. And in a lifetime, if you have the p53 mutation, it's like 95%.
So, some doctors who were involved in studying p53 said, 'Given that propensity, can we help people by giving them extensive, regular screening?'
The advantage of knowing if you have the inherited mutation is that you can get annual full body MRI scans. You can get blood tests, you can get all sorts of tests.
In my brother's case, I think it actually prolonged his life by a couple of years. After he had his testing, it was positive for the p53 mutation and he knew he had Li-Fraumeni syndrome, so he began regular scans. In 2017, the scan detected pancreatic cancer on the tip of the pancreas.
Usually you don't find pancreatic cancer until you have symptoms, and it's too late. Pancreatic cancer is one of the deadliest cancers. In his case, it was found early. They were actually able to do an operation and get rid of the tumor on the tip of his pancreas. However, two and a half years after he had that surgery and survived pancreatic cancer, it came back in his lung.
He died when he was 69, in 2019. Sadly, it was seven months after his son died of his third cancer.
Newsweek cover of the p53 gene that would lead to a better understanding of cancer.
Newsweek, 1996
Leung:
And Charlie was only how old?
Ingrassia:
Charlie was 39. This is where I would argue for people who say they don't wanna know because they don't wanna have it over them. 'I know I have this mutation. My children have the mutation. I'm gonna be worried all the time.'
Not knowing doesn't change whether you have it or not.
I say knowledge is power. And this is why I wish that we had learned earlier in 2010 when Charlie had a second cancer, colorectal cancer. He started having problems at the beginning of the year.
It wasn't until the summer that he was diagnosed. I think maybe his guard was down, he'd gone almost three decades after surviving his childhood with cancer. But it took quite some time before they finally said, 'Okay, let's do a colonoscopy.' And by then, he had a later stage of colorectal cancer.
Again, he survived amazingly, but he survived in part because they gave him heavy doses of radiation to kill the cancer cells. The problem is, if you have Li-Fraumeni syndrome and you have p53 that can't fight against potentially cancerous cells the way that it normally would, radiation can plant the seeds for future cancers.
Sure enough, in 2017, a month or two after my brother was diagnosed with pancreatic cancer, Charlie was diagnosed with his third, and final, cancer. It was bone cancer in his hip, right where he was getting all that radiation to kill the colorectal cancer.
The odds of him living a long life given the family history were probably not good. But I do think that it might have made a difference.
If he had known in 2010 and he'd been diagnosed right away, it wouldn't have changed whether he'd gotten the cancer, colorectal cancer or not. But the earlier diagnosis might've meant they would've had a lot less radiation to kill it. It might've meant that it wouldn't have come back in his hip.
And that was one of the really sad things. It was so hard to watch for this young man. They had to amputate his leg, including his hip, in a desperate attempt to save his life. But the cancer kept spreading after that. About six months later, not long before my brother died, Charlie died.
Leung:
That was the hardest part of your book.
Ingrassia:
It was. It was incredibly hard to go through and it was incredibly hard to watch and to write about and talk to his friends. But, I feel more connected to my family because of the research that I did. Obviously I knew a lot about my sisters and their cancers, but I learned more about it in this process.
My sister Gina began keeping a diary from the time that she learned that she had lung cancer until just before she died, six or seven months later. It was a combination of wonderful and painful to read about.
One of the most painful things, if you go back in the eighties, was that it was a time when there was a lot of belief in mind over matter.
If you just had the willpower, you could fight illnesses of all kinds.
Of course, the corollary to that is if you're not getting cured, it's your fault because you don't have the right amount of willpower.
I sensed that in reading her diary that she felt that it was on her and if she wasn't getting better, it was not her fault, but certainly that she contributed to it.
All I could think of is, 'No, you don't know that you have this mutated gene inside you that basically has doomed you.'
So, there were a lot of moments in writing it like that. My sister Angela, who was so young. I talked to a lot of her friends about her struggling with this and how difficult that was.
If you could just put yourself in her mind: you're 23 years old and you're the youngest of the siblings. She learned she has cancer, and we learned pretty early on that the outlook is not gonna be great because the doctor said, 'Well, I operated. I did what I could, but it spread throughout her abdomen.' It was about a six month period and it was pretty much downhill.
I wanted to talk to as many people who knew my sisters as I could. I wanted to talk to her oncologist and I wasn't sure of his name. My sister-in-law remembered a last name, so I started doing research. I'm a reporter and sure enough, there was a name that popped up.
It looked like he had recently retired. I sent a note, and if I might, I'll just read a little bit from the book about this.
(Excerpt from book):
My eyes welled up the instant I saw the subject line on the email that had just appeared in my inbox. 'I have never forgotten your sister.'
Only a few hours earlier, I had sent a LinkedIn message to a retired doctor wondering if by chance he happened to have treated my sister Angela, 40 years earlier. Was he Angela's doctor? And even if he was, what were the chances he might recall? One patient he treated many years earlier out of the thousands he had cared for.
'I realize you may not remember my sister Angela's case as this was decades ago' I wrote. 'But if you do, I'm hoping to speak with you.'
I wasn't sure if I'd even hear back, so his quick response floored me. 'The day after your sister died, I received a beautiful flowering plant at home. Not only do I remember her, so does my wife.'
I was in tears then and I am now.
I just think about my sister, 23 years old for a young woman. Her whole life was ahead of her. This is about a life loss, a stolen life.
There was a one word message that came with the flower to all of us: 'forward.' The fact that she was dying, but she wanted us to grasp life, it's pretty profound for a then 24-year-old. That was one of those many moments in writing the book. It stopped me.
Leung:
Larry, I don't know if you know, but one of the reasons why I'm so interested in cancer is
So my entire life I'm like, 'Will breast cancer come from me?' This question of 'Will I get cancer?'
My mom didn't get breast cancer, but I did. It was because of early detection, mammograms. I was detected early and so I'm cancer free. I had a mastectomy. I didn't have to go through chemo, so I'm one of the lucky ones.
I think reading this book, you're always wondering, 'Why did I get cancer? And why no one else?'
And for you, many other members of your family got cancer. That's why you wrote this book.
So do you feel like you are satisfied with the answer on why cancer struck your family so many times?
Ingrassia:
I'm heartbroken and sad that I lost all my family to cancer, especially so many so young. But my brother and I often talked about how blessed we were in many ways.
We were the children of poor Italian immigrants and we ended up doing things and achieving things that we never would've imagined growing up.
I always say that it's not really right to say 'Why me?' about all the bad stuff in your life if you weren't also asking 'why me' about all the good stuff.
I think I decided long ago to try to celebrate our good fortune in life and not dwell on or be angry. It's not a matter of being sad, of course I'm sad. I think often of my family and missing them and not being able to grow old with my siblings. But I try not to dwell on 'why me.'
It's part of genetics. There's no control over it.
Leung:
Now it took you a year to get tested. Why did you wait so long?
Ingrassia:
I don't know. I was busy, but what happened was my daughter began pestering me. 'I want you to get tested.'
It would be very rare, but it's possible to inherit the p53 mutation and not get cancer. There's that tiny 5 percent. Nobody knows why. There's still so much they don't know. They've learned a lot. They still don't know.
If I had the mutation, there would've been a 50% chance that I passed it on. So it was really because that's what I wanted to know, if I passed it on to my children.
It was only after I realized that, that I got tested. That's why she wanted me to get tested. But that was really the impetus for me. That was why I finally said, 'Okay, I'll do it.'
Also, quite frankly back then, getting a genetic test was quite expensive. It was $3,000 to $5,000. So I was lucky my brother, through his oncologist, found a study that was being done at the University of Southern California. I was living in Los Angeles, and I was able to get it in, do it without any cost.
Now you can get a genetic test for $250. Often if you have a history of cancer in your family, your insurance company will cover it. The cost is a lot lower. They have these multi-panel tests where they can find out if you have any number of cancer mutations. Some people have more than one.
Leung:
So in your book you mark the date July 10th, 2021. Tell me about the significance of that date.
Ingrassia:
When I was writing the book and researching the book, at some point you're thinking a lot about death and not necessarily in a sad way, sometimes in a sad way, but you're just thinking about life and death and the arc of life. At some point, I realized that the date was going to be the day that I would be one day older than my brother when he died, and that would make me the longest living member of my immediate family.
I said, 'You know what? I wanna do something that day.'
Celebrate is the wrong word, it's really commemorating that day. It's more of a memory of that day. So, I pondered a lot, 'Okay, what can I do that would be kind of a little bit interesting and a little bit fun? That says I'm glad to be alive. I'm lucky to be alive.'
I pondered a bunch of things, maybe go for a long hike and go paragliding. Finally I found a place in Los Angeles that had something that's called a
Leung:
I had to Google that. I didn't even know what that was.
Ingrassia:
I had never heard of a gyrocopter either. A gyrocopter is like a tiny helicopter, about the size of a big motorcycle. You can fit two people in. The great thing about it is that you actually kind of almost see even more than a plane. You have this bubble in front of you. You can see everything.
It was just like, 'Oh my God, I wanna do that.' So I told my wife.
I said, 'Vicki, I'm gonna take this gyrocopter.' And she said, and of course she didn't know what it was, 'Okay, so on the day that you become the longest living member of your family, you're gonna put your life at risk?'
And I said, 'You're right.' I thought it was a great line. I said, 'Yeah, but I'm gonna do that anyway.'
I just felt that I wanted to do something where I felt really alive. I could be in awe of this kind of human experience.
I got on that gyrocopter. It was about an hour. It's like this tiny thing that went up and down the California coast, which is pretty spectacular. I felt alive.
Let me see if I have it here in the book.
(Excerpt from book):
I felt an exhilarating rush of adrenaline and yes, one or two stomach churning ones, too, as the gyrocopter dipped and spinned. I contemplated what my mom and dad and my brother and sisters would've made of my jaunt. I'm pretty sure they would've rolled their eyes and then smiled happy that I was doing something just a little bit wacky on this day for them and for me, for us. Because they couldn't.
Regina and Angelo Ingrassia on their wedding day. Regina would pass on a hereditary cancer gene to three of four children. Regina died of breast cancer in her 40s. Three of her children got cancer as adults and died.
Handout courtesy of Ingrassia family
Leung:
You say this book is a love letter to your family. So what do you mean by that?
Ingrassia:
It's a love letter because, especially my sisters and Charlie, their lives were cut short and I wanted to make sure that these lives that were cut short were never forgotten even though they were short lives.
I think it's also a little bit of a love letter to other families like this. One of the things that's been most touching to me has been people who've reached out to me since I wrote this book, those who say 'thank you.'
It's so rare when somebody says they have Li-Fraumeni syndrome.
So for them to be able to say, 'You've given a little bit of a voice to us. You've helped us have an identity within this community,' I've been really touched by the number of people who have reached out to me.
And again, some of these letters…
Leung:
You got letters from people?
Ingrassia:
Yeah.
Leung:
Yeah, that's great.
Ingrassia:
Yes, most of these kinds of messages I would say I printed out. I cried this week when this book came out, not because I wrote it or had anything to do with it, however, because it is part my story, too.
I have Li-Fraumeni syndrome. I'm grateful for this book. Being a call for grace, hope, and continued investment in a fight against all cancers that steal those we love and that steal our own futures.
Another message was, 'I just finished 'A Fatal Inheritance.' I don't think I've ever sent an email to an author before, but I wanted to thank you for sharing your family's story. As someone with an inherited mutation that has unknowingly passed it along to two thirds of my kids, I'm always seeking to learn more about my mutation in the latest surveillance and research.'
Leung:
Did you expect that?
Ingrassia:
No. This is one of the things I think that was especially moving and especially touching about the book, to hear from total strangers saying the commonality was like, 'Your family is my family.'
Those were the moments in writing the book that touched me the most.
Leung:
Larry Ingrassia is a journalist who has worked with the Wall Street Journal and the New York Times and the Los Angeles Times.
His latest book is called 'A Fatal Inheritance: How a Family Misfortune Revealed A Deadly Medical Mystery.'
Listen to more 'Say More' episodes at
We want to hear how cancer has changed you. Email us at saymore@globe.com.
If you like the show, please follow us and leave us a review.
Kara Mihm of the Globe staff contributed to this report.
Shirley Leung is a Business columnist. She can be reached at

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It's not nearly as rare as I thought it was, and it affects anyone at any age, like it truly does not discriminate. So everything I thought I knew about it, was wrong. I remember the ice bucket challenge, but mostly because I didn't get nominated and I felt really unpopular. Sivertson: Remember the ice bucket challenge of 2014, Ben? Johnson: I remember the viral dump-a-bucket-of-ice-water-on-yourself-after-someone-nominates-you part, but I completely forgot that this was about raising money to cure ALS maybe because nobody tagged me. Sivertson: Well, nobody tagged Brooke either. Eby: I'm like, 'Man, I'm in no one's top three.' Gimme a break. Johnson: The initial few months after the diagnosis were rough. Eby: All I had been doing was like lying in bed and eating M&M's every day. It was a dark time, reading a lot of books. I think I was reading like a book a day to escape. I know my Goodreads was fire that year. It will never be that high again. Johnson: In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable Eby: Because no one knows what to say. Like I remember we were at the doctor, at the neurologist, and they were like, 'Well, with ALS you really need to focus on gaining weight. So like, eat whatever you want, eat as much as you want.' And my sister goes, 'You're so lucky.' I just remember immediately pulling out my phone and being like, 'We're gonna remember that one.' My poor sister, I use it all the time. She's the kindest one of our family, and I'm always throwing her under the bus with that story. Sivertson: Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis. Johnson: But she wasn't sure anyone else would see the humor in a situation that was also pretty bleak. So she kept the note private until a wedding where she was supposed to be a bridesmaid. Eby: I was like, 'You've got to be kidding me.' The bridesmaid dress barely fit me, because, again, the M&M's. Then I showed up with a walker. And as soon as I walked in, the bride's grandma showed up with the exact same walker. I looked down and I was like, 'Oh, she has tennis balls, too.' So we were kind of like, 'Heyyyy.' I turned to my friend and I was like, 'We're out of here. There's no way I'm going to walk down the aisle with this walker as a bridesmaid, no chance.' My friend, not the bride, I told her that in secret and she was like, 'It could be really embarrassing or we could just try to make it really fun, like you're gonna get a good story out of it. Just go for it.' We made it through the ceremony and then by the reception, I don't know if my embarrassment had worn off or if I just kind of forgot about it, but we had the best time on the dance floor. The bride was doing the limbo under my walker. People were hopping on for walker rides and I was like, 'Okay, everyone's laughing.' I'm way more comfortable because the prior two months I had just been having like tearful conversations telling people about my diagnosis and being like, 'All right, go. I ruined your day. Like, go enjoy.' And so this was the first time I'm like, 'All right, people aren't even asking me what's going on. They're just trying to have fun.' Johnson: When Brooke got home, she started going through the note on her phone, detailing all the funny moments since her diagnosis. The next day she had brunch with the same friend who cheered her up at the wedding, Jackie. Brooke showed Jackie the note on her phone. Eby: She was like, 'Brooke, you need to do something with this. This can't just live here.' I forced her to be in my first video because I'm like, 'If we are gonna be embarrassed, you're going down with me.' Johnson: The very first video is of Brooke and Jackie on a couch, pantomiming the conversation where Brooke discloses that she has a rare terminal illness. Brooke's head is in her hands. She's pretending to cry, but Jackie is smiling wide with deep dimples. The videos that follow are very vintage 2022 TikToks. Heavy on popular sounds like this one with the footage from the wedding that started it all. (TikTok clip from Eby's account): Don't be suspicious. Don't be suspicious. Don't be suspicious. Don't be suspicious. Johnson: That's played after a caption of Brooke saying she 'doesn't want to draw attention to her diagnosis,' while you see Brooke and her walker absolutely being the main characters on the dance floor. Sivertson: Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her shtick. She uploaded the videos under the handle @limpbroozkit. Johnson: Fred Durst, anyone? Limp Bizkit? No. Amory? No? Sivertson: I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. Eby: That's why in my first couple of videos, I was always kind of nervous because I'm like, 'Should I be joking at a time like this? I don't know.' Johnson: That all makes total sense to me. And I also think humor has always been this way of dealing with darkness. Right? Eby: I agree. I think especially with COVID. During and post COVID life, the whole concept of meme culture, like we can make a joke out of absolutely anything. Like we're quick now. People just need humor, I think to process things. Johnson: Can you talk a little bit about when you started to realize that you were really gaining traction with the stuff that you were putting on the internet? Eby: When I first started seeing my follower count go up and all of that. It was probably my dating videos, early days when I was using a cane. Johnson: These videos feature screenshots of the texts she got from potential suitors. Sivertson: Things like, 'Can I borrow your cane? I feel myself falling.' Johnson: Or 'Okay, I see you Abraham Limping.' Sivertson: Next, Brooke started making videos about this medicine she was taking as part of a trial Johnson: Medicine that tasted really bad. Eby: So I did a taste testing series so people could suggest how to chase it or how to deal with it. Eby (clip from TikTok video): Pickle juice, shot glass. Oh, stench. Let's just do it. Let's just do it. It's no big deal. Eby: I think after those two, that was when I started seeing, 'Okay, people are remembering that they've seen me before and they were saying like, Brooke, blah, blah blah.' They remembered who I was, as opposed to it just being another swipe away video. But it is hard, I think, to still understand any sort of impact you make if it's just on the internet, because, I don't know, sometimes it feels like I'm playing The Sims. I see the number of people watching and I see all the comments, but it's strange because ultimately I'm talking to my phone and then I'm clicking a button and then I'm seeing little internet sims pop up as comments. I'm like, 'How is any of this real?' It's strange because everyone's like, 'You're so brave.' I'm actually just talking to myself in my room. Sivertson: Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term? Eby: No. I don't really have one. The stuff that I influence on is much more niche. If you need adaptive clothing, I've got a recommendation, but it's not like everyone's going to go out and sell that out because it's not a need for most people. Johnson: That's what I was gonna ask, what are the products that you would influence on? Eby: Yeah, you should see the partnerships that reach out to me. I always crack up picturing my manager versus a normal person's manager, because she gets calls from the National Funeral Directors Association and I'm like, 'Sure, sure, sure. That's a perfect fit.' It's a very weird space to be in. Sivertson: So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech with only the occasional funeral sponsored content. Eby (clip from TikTok video): Funeral directors help with every step of the end of life plan. They can document your wishes and understand the logistics. So if I wanna play Kesha's 'Die Young,' noted. Johnson: Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird. Eby: Someone wrote me a message. This poor person because I don't even know who it was. It was some stranger, but she was like, 'Sometimes I feel like I have a death sentence because I've been single for so long.' Sivertson: Oh. Johnson: Wow. Eby: It's just like, in her heart, she's not trying to be mean to me. Johnson: Mm-hmm, right. There's also this layer of pity or sort of people being like, 'Oh, you make me feel thankful for every day because your life is so terrible, right?' Eby: Yeah. Johnson: What does that feel like for you to receive? Because you seem very open and non-judgmental in some ways, but also you can see the humor and ridiculousness of the way people act towards you. That's what I was trying to ask about, if that makes sense. Eby: Yeah, I actually had not even thought about that. Then someone messaged me once and they're like, 'Do you ever get sick of being the reason people want to be a better person?' And I'd never really thought about it, but once she said it, now I'm like, I do. It kind of is in the back of my head sometimes when I get comments like that, but they have to be phrased in a very specific way for it to be a little obnoxious. Most of the time, if someone's like, 'I wanna appreciate every day.' To me, that's a great comment. I'm like, good. If someone were to say, 'I should feel lucky because my life isn't as shitty as yours,' I don't think I would like that phrasing. But I don't know that people phrase it like that. I don't remember seeing that. At least I would say feedback is a gift. The feedback that I got, especially at the beginning was, 'You're making light of this' or 'You seem too happy.' And I think honestly, most of the people who are making those comments are probably ones who had a first row seat to someone living with this and are still feeling angry at the disease. At least that's the backstory I've given them because otherwise, what do they care? I think in my mind, I'm not reframing it. I just wasn't that progressed. It wasn't that hard at that point. And now that it's gotten worse, there's not going to be as many videos of me being like, 'Hey, this is no big deal.' It's just the nature of progression. So I'm just like 'Stay along for the ride and if you wanna see things get worse, you will with this disease. So stick around.' Johnson: Watching all of Brooke's videos in one day is kind of like reading a flip book of how ALS progresses. In the early videos, Brooke doesn't look that far off from, say, one of the famous beauty influencers like Alix Earle. She does her makeup and get-ready-with-me videos. Her shampoo-commercial hair always looks like she's just had a blowout. She lives alone in a cool apartment. Now she needs around the clock care, thus the difficult decision to move home. Sivertson: How would you describe your mobility right now? Eby: Like a ragdoll? Nothing really works. I can raise my hands, but they're claws now. I'm really not into the way they look. I can still type, especially on my phone. I can still type on the keyboard, a lot more typos these days. I can move my head and talk, but below the screen, it's a mess. Johnson: Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning. Eby (clip from TikTok video): It's so surreal the amount that we've had to adapt. Three years ago, I was walking and now I can't do anything. I don't even feel emotions because it doesn't feel real. It feels like I'm playing a role in a movie and then someone's gonna finally yell, 'cut,' and I'm gonna just pop up outta my chair and go be normal again.' Eby: Day to day, I think it's easy for me to just rely on humor and staying busy to cope. But then in that video, I just looked back at all these videos from a year before, two years before, five years before. And I was like, 'Oh my God.' I did not realize, I knew how much it changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. I made that video and I was thinking, 'This is not a relatable feeling at all.' I just feel like I'm an actress playing a role right now. This doesn't feel real. And people are like, 'No, that's called dissociation. That's very much a psychological term that most people go through.' And I was like, oh, okay. You can tell I'm not actively in therapy all the time. Sivertson: In your videos, you've been documenting all along the way, the progression of the disease and how it's changing your life day by day, implement by implementation that you're adding into your routine. But there will come a time when you can't verbalize anymore, when you can't use your voice and use your humor in the way that you use it now. Do you think you'll still be making videos? Have you thought about what the content creation process might be then? Eby: Yeah, there are some people who go the full progression while still having a voice, and I'm still delusional enough to think I'm gonna be one of them. Even though my voice is clearly getting weaker, I'm still not slurring, which makes me happy because I'm like, people can still understand me. But that said, I have voice banked. I do have my voice saved so I can use it in some sort of text-to-talk thing. That's a big thing in the ALS community. As soon as you get diagnosed, they start saving your voice. But, I think my intention is to keep going really as far as I can. I think the way it looks might be a little different. Rather than me talking a ton, it might be like my parents helping to talk or filming stuff. Or maybe it's just, not talking and I'm just putting music over something I'm doing. I think there's options. My goal is really to show everything, just because that's what I wish someone had done. I would love to see someone who's more progressed than I am, get into bed or stay asleep. Like how the hell do you stay asleep when you can't move and you get uncomfortable or something falls asleep? Those are the things that I don't want to watch a whole sad documentary just to glean insights of how to do things when I could just make a two minute video. It might not work next week, but it's working right now, so that's the goal. Man plans, God laughs. I think people say, but that's the plan for now. Sivertson: Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years. Johnson: What she does know is that curing ALS, it's going to take more resources. Sivertson: Social media, whether it's the Ice Bucket Challenge or a TikTok or raising awareness, can build community around ALS, but it's not going to cure the disease. That takes research, which has a price tag. Eby (clip from TikTok video): Thank you for all of the thoughts and prayers. Now, have you considered money? Sivertson: Right now ALS researchers are facing proposed funding cuts by the Trump administration that could drastically slow down their efforts. So if you're a billionaire, says Brooke, maybe forget about rockets and Mars and take up funding ALS research as your cause. Eby: I feel like the other planets have already made it here, and we just haven't been told about it. So I'm like, why don't we just ask them what it's like before we go waste all our money going there. Johnson: On TikTok, Brooke is a one woman ice bucket challenge, raising awareness of ALS and what it's like to live with it. But going viral prompted her to start another online community, one that's more specific. Eby: So if you think about my last two and a half years after being diagnosed, I put myself in front of an audience, and because of that, I have access to so many more resources because I have 200,000 people willing to answer a question I have. If I were to post, 'I really need advice on the best toothbrush for weekends.' I could get a thousand messages back. Whereas someone who's not a psycho putting her life online, like a normal person living with this disease, they could go to their support group, and I don't know how fast they'll get a response. There's just not as immediate of answers as I've been able to get. So I kept thinking about that: How do I make it so everyone has this level of access and this level of immediacy? And then I flashed back to when I first got diagnosed, they give you this godforsaken packet, it's like an encyclopedia size, and it's just pamphlet after pamphlet of resources. You've just gotten diagnosed, they tell you you have two to five years, it could be less than that and you're gonna lose every ability until that point. You go home and your brain is just scrambled and you're also like, am I gonna be paralyzed tomorrow? Like you just start thinking in terms of speed, everything moves so fast, and yet the resources they give you are in a folder with paper that none of us has used since elementary school. I'm like, if this disease moves fast, like why are we still treating it like we're in the nineties? We gotta do better than this. Johnson: Brooke's day job is at the tech company, Salesforce. She worked with some of her colleagues there to create a channel on the professional group messaging app Slack. It is specifically for ALS patients and their caregivers, and it's called Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Eby: Even when I'm talking to my best friends in the world, who I've known since we were four years old, I could tell her anything, but right now, she's about to have her second baby at the same time where I'm learning how to use a ceiling lift to get me into the shower. Like we lead two very different lives. I think it's probably the same way that moms feel after they have a baby, where they're like, 'I could complain to my friends, but unless they have a newborn too, they don't get it.' That's probably how everyone feels about something in their life. It's just good to see other people, whether they live near you or look like you going through the same thing. Because you're like, 'Okay, I'm normal in this group.' Johnson: If you have an untold history, an unsolved mystery, or other wild story from the internet that you want us to tell, hit us up at endlessthread@ Leung: Thanks for listening to this episode of 'Endless Thread.' If you want to hear more, follow 'Endless Thread' on Apple Podcasts, Spotify, or wherever you listen. And make sure you're following 'Say More' while you're at it. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at

Yahoo

5 days ago

• Yahoo

The neuroscientist working on ‘zapping' away unwanted memories

Think of your happiest memory. A wedding, your child's birth, or maybe just a perfect night out with friends. Sit with it for a moment. Remember the details. What were you wearing? What did it smell like? How did it make you feel? Now do the opposite. Think of a sad memory—the loss of a loved one, getting laid off, or a painful breakup. Sit with this one too. Which would you rather keep? Of course, you want the happy memory, the one that made you feel good and joyful about life. Yet, the painful ones linger for years and sometimes decades, like bruises beneath the surface. If you could choose, would you keep them—or delete them entirely? If this is all starting to sound like something out of Eternal Sunshine of the Spotless Mind or Inception, you wouldn't be too far off—and Steve Ramirez would agree with you. Ramirez is a neuroscientist at Boston University and National Geographic Explorer whose research occurs on the bleeding edge of memory science. He's perhaps best known for studies he helped conduct that showed that it was possible to implant a false memory in mice. The findings were published in the journal Science in 2013 and the Royal Society in 2014. His research is built on a central truth: Memory is fickle. It changes and morphs every time we recall it. Ramirez compares it to hitting 'Save As' on a Word document. Everytime we retrieve a memory, we change it slightly. Ramirez is exploring whether we can harness that 'Save As' process—intentionally rewriting our memories instead of letting them change by accident. So far, he's figured out how to do something even more surprising: not destroy a bad memory, but create a new one. 'We know memories are malleable, and susceptible to modification,' says Ramirez. 'Every time they're recalled, they're being saved and edited with bits and pieces. We wanted to see if we could do that in the lab. Because if we could do that directly in the lab and brain, then we can really get a higher resolution snapshot of how memories work when they're being warped or when they're being modified.' The team's foundational study came in a 2012 paper published in Nature where they identified and activated a cluster of neurons in mice brains that encoded a fear memory—specifically, a mild foot shock. To do so, the researchers genetically engineered the mice so that memory-related neurons become light sensitive. The creatures were then placed into a box and received a foot shock—resulting in the memory of that shock becoming encoded in the light-sensitive brain cells. The team then surgically implanted a tiny fiber-optic cable into the skull of each mouse that they could use to shine a laser into its brain. When they turned it on, it activated the bad memory on command like flipping a switch. Next they wanted to see if they could create a false memory. For this, they put a mouse in a safe box and let it explore. The next day, they placed the mouse in a different box, triggered the memory of the safe box by shooting a laser over its brain, and simultaneously gave it a foot shock. When they later returned the mouse in the first box, it froze in fear—even though it never received a shock in that box. The team had, in effect, implanted a false memory in the mice. 'The key thing with that experiment was that we showed that we could artificially activate a memory while the animal was experiencing something. Later, that new, updated version was the animal's last recorded version of that memory,' he explains. 'The mouse was scared in an environment where, technically, nothing bad happened.' Between the lasers, false memories, and shocking experiments, you'd be forgiven if you thought this was getting pretty sci-fi. Ramirez embraces the comparison as his work often brushes up against science fiction in big ways. 'I think science fiction and science reality are in lockstep, often influencing each other in surprising and unpredictable ways,' Ramirez says. 'What sci-fi can get 'wrong' sometimes is inevitable, but the work it inspires and the dreams and visions sci-fi can conjure up in people is practically limitless, and I love it for that very reason.' Still, it can seem scary, especially when you consider the potential applications to humans. But Ramirez says that memory manipulation would take a decidedly less invasive approach for people—no brain lasers required. Instead, if you want to activate a happy memory in another person, all you have to do is ask them about it. (Remember the beginning of the story—or did you forget?) 'We can update a seemingly safe memory into something negative,' he says, referring to the foot shock test. 'But what about the opposite: Can we turn a negative memory into a positive memory?' Despite the pop-culture comparisons to Inception or Eternal Sunshine, Ramirez's real-world applications are far less cinematic—and arguably more profound. Instead, his work is laying the groundwork for helping people with PTSD process harmful memories, or those with neurodegenerative disorders like Alzheimer's and dementia live longer, better lives. In a forthcoming paper currently under peer review, his team claims they were able to identify where exactly a memory will form in the brain days before it even happens. It's like being able to predict where lightning is about to strike before the storm even gathers. This might allow future clinicians to anticipate the effects of Alzheimer's, Parkinson's, and dementia before they occur. 'Imagine being able to make a Google Maps for memory, but with the level of individual brain cells,' he says. 'You could say, 'This is a positive memory in the brain. It's located here in this 3D web of activity. We can zoom into it here and it looks like something is misfiring, and that might be the remnants of some kind of cognitive decline or memory loss, or amnesia, or Alzheimer's.'' We're still a long way away from a Google Maps for memory. However, Ramirez is quick to point out that his field of research is still in its infancy. He puts it this way: the study of neuroscience is roughly 100 years old—whereas physics is more than 2,000 years old. 'Relative to physics, neuroscience is still in its Pythagorean Theorem stage,' he jokes. There's still a lot we don't know about the brain and, as a result, how memory works. But Ramirez and neuroscientists like him are turning science fiction into science reality, which may allow us to one day edit and manipulate our own experiences. More importantly, their research helps us understand the profound ways that memory shapes us—and how we might begin to shape it right back. This article is part of Your Memory, Rewired, a National Geographic exploration into the fuzzy, fascinating frontiers of memory science—including advice on how to make your own memory more powerful. Learn more. The nonprofit National Geographic Society, committed to illuminating and protecting the wonder of our world, funded National Geographic Explorer Steve Ramirez's work. Learn more about the Society's support of Explorers.

National Geographic

5 days ago

• National Geographic

The neuroscientist working on ‘zapping' away unwanted memories

Think of your happiest memory. A wedding, your child's birth, or maybe just a perfect night out with friends. Sit with it for a moment. Remember the details. What were you wearing? What did it smell like? How did it make you feel? Now do the opposite. Think of a sad memory—the loss of a loved one, getting laid off, or a painful breakup. Sit with this one too. Which would you rather keep? Of course, you want the happy memory, the one that made you feel good and joyful about life. Yet, the painful ones linger for years and sometimes decades, like bruises beneath the surface. If you could choose, would you keep them—or delete them entirely? If this is all starting to sound like something out of Eternal Sunshine of the Spotless Mind or Inception, you wouldn't be too far off—and Steve Ramirez would agree with you. Ramirez is a neuroscientist at Boston University and National Geographic Explorer whose research occurs on the bleeding edge of memory science. He's perhaps best known for studies he helped conduct that showed that it was possible to implant a false memory in mice. The findings were published in the journal Science in 2013 and the Royal Society in 2014. His research is built on a central truth: Memory is fickle. It changes and morphs every time we recall it. Ramirez compares it to hitting 'Save As' on a Word document. Everytime we retrieve a memory, we change it slightly. Ramirez is exploring whether we can harness that 'Save As' process—intentionally rewriting our memories instead of letting them change by accident. So far, he's figured out how to do something even more surprising: not destroy a bad memory, but create a new one. The science of remembering what never happened 'We know memories are malleable, and susceptible to modification,' says Ramirez. 'Every time they're recalled, they're being saved and edited with bits and pieces. We wanted to see if we could do that in the lab. Because if we could do that directly in the lab and brain, then we can really get a higher resolution snapshot of how memories work when they're being warped or when they're being modified.' The team's foundational study came in a 2012 paper published in Nature where they identified and activated a cluster of neurons in mice brains that encoded a fear memory—specifically, a mild foot shock. To do so, the researchers genetically engineered the mice so that memory-related neurons become light sensitive. The creatures were then placed into a box and received a foot shock—resulting in the memory of that shock becoming encoded in the light-sensitive brain cells. The team then surgically implanted a tiny fiber-optic cable into the skull of each mouse that they could use to shine a laser into its brain. When they turned it on, it activated the bad memory on command like flipping a switch. Next they wanted to see if they could create a false memory. For this, they put a mouse in a safe box and let it explore. The next day, they placed the mouse in a different box, triggered the memory of the safe box by shooting a laser over its brain, and simultaneously gave it a foot shock. When they later returned the mouse in the first box, it froze in fear—even though it never received a shock in that box. The team had, in effect, implanted a false memory in the mice. 'The key thing with that experiment was that we showed that we could artificially activate a memory while the animal was experiencing something. Later, that new, updated version was the animal's last recorded version of that memory,' he explains. 'The mouse was scared in an environment where, technically, nothing bad happened.' Inside the brain's editing room Between the lasers, false memories, and shocking experiments, you'd be forgiven if you thought this was getting pretty sci-fi. Ramirez embraces the comparison as his work often brushes up against science fiction in big ways. 'I think science fiction and science reality are in lockstep, often influencing each other in surprising and unpredictable ways,' Ramirez says. 'What sci-fi can get 'wrong' sometimes is inevitable, but the work it inspires and the dreams and visions sci-fi can conjure up in people is practically limitless, and I love it for that very reason.' Still, it can seem scary, especially when you consider the potential applications to humans. But Ramirez says that memory manipulation would take a decidedly less invasive approach for people—no brain lasers required. Instead, if you want to activate a happy memory in another person, all you have to do is ask them about it. (Remember the beginning of the story—or did you forget?) 'We can update a seemingly safe memory into something negative,' he says, referring to the foot shock test. 'But what about the opposite: Can we turn a negative memory into a positive memory?' Despite the pop-culture comparisons to Inception or Eternal Sunshine, Ramirez's real-world applications are far less cinematic—and arguably more profound. Instead, his work is laying the groundwork for helping people with PTSD process harmful memories, or those with neurodegenerative disorders like Alzheimer's and dementia live longer, better lives. In a forthcoming paper currently under peer review, his team claims they were able to identify where exactly a memory will form in the brain days before it even happens. It's like being able to predict where lightning is about to strike before the storm even gathers. This might allow future clinicians to anticipate the effects of Alzheimer's, Parkinson's, and dementia before they occur. 'Imagine being able to make a Google Maps for memory, but with the level of individual brain cells,' he says. 'You could say, 'This is a positive memory in the brain. It's located here in this 3D web of activity. We can zoom into it here and it looks like something is misfiring, and that might be the remnants of some kind of cognitive decline or memory loss, or amnesia, or Alzheimer's.'' We're still a long way away from a Google Maps for memory. However, Ramirez is quick to point out that his field of research is still in its infancy. He puts it this way: the study of neuroscience is roughly 100 years old—whereas physics is more than 2,000 years old. 'Relative to physics, neuroscience is still in its Pythagorean Theorem stage,' he jokes. There's still a lot we don't know about the brain and, as a result, how memory works. But Ramirez and neuroscientists like him are turning science fiction into science reality, which may allow us to one day edit and manipulate our own experiences. More importantly, their research helps us understand the profound ways that memory shapes us—and how we might begin to shape it right back. This article is part of Your Memory, Rewired, a National Geographic exploration into the fuzzy, fascinating frontiers of memory science—including advice on how to make your own memory more powerful. Learn more. The nonprofit National Geographic Society, committed to illuminating and protecting the wonder of our world, funded National Geographic Explorer Steve Ramirez's work. Learn more about the Society's support of Explorers.