Episode #12 of the Charged podcast.
About the Episode
Sue Slaugenhaupt, PhD, is the inaugural scientific director of Mass General’s Research Institute. She began at Mass General in the early 1990s and has spent her whole career focused on understanding two rare diseases: familial dysautonomia (FD) and mucolipidosis type IV (ML4). She tackled the challenges of building a thriving scientific career at the same time she was building her family, and in this episode she discusses how she is now working to pay it forward and change the culture of scientific research for the better.
About the Guest
As the scientific director of the Mass General Research Institute, Susan A. Slaugenhaupt, PhD, leads the hospital’s strategic initiative to support the entire research enterprise and to foster and sustain medical innovation. Her team works to promote science at Mass General by increasing interactions with industry, fundraising and promoting Mass General research to the community.
Dr. Slaugenhaupt is also a professor in the Department of Neurology and Harvard Medical School and an investigator in the Center for Genomic Medicine. She spearheads several programs and educational initiatives, including a thriving undergraduate summer internship program. She co-directs the Partners Biobank at Mass General, which strives to speed the translation of research discoveries into improved clinical care for patients.
Discoveries in her lab have led to the successful implementation of critical population screening for FD and ML4 and to the development of an innovative treatment for FD. This exciting work has led to a clinical trial of the first therapeutic for FD aimed at altering the molecular defect.
Dr. Slaugenhaupt was named one of the Top Ten Women to Watch in Science and Technology by the Boston Business Journal in 2016.
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Q: Welcome, Sue.
A: Thanks, Amy.
Q: Can you start by talking a little bit about what it means that Mass General is a research hospital?
A: A research hospital, also known as an academic medical center, is what really, I think, sets us apart at Mass General, and we have a four-part mission, so we have excellent clinical care, which is the number one part of our mission. But also, research, education, and community health.
So, research is a full 25% of the operation at the hospital. And we have the largest research enterprise of any academic medical center in the country. So, it really sets us apart in terms of our ability to offer the newest and best treatments to our patients.
Q: And how does research interact with, or feed into patient care?
A: It’s really interesting here, because I like to say that we have some of the best clinicians in the world, and we have some of the best researchers in the world, but many of our best clinicians are also scientists. So, we have a lot of people like that.
And so, working together, we’re able to develop – to see first hand the clinical problems, and scientists, then, can think about how the work that we’re doing can address some of these clinical problems. That’s the beauty of this place is that our scientists, and clinician work together to come up with new ways to treat, diagnose, prevent diseases.
Q: So, it sounds like from a patient perspective, you might not realize how much is happening behind the scenes?
A: Oh, that’s so absolutely true. I think this is one of the reasons we launched the Research Institute is to increase the visibility of research. It’s almost hidden. For years and years, we haven’t touted the fact that we’re the number one research institution in the country. And I don’t know that a lot of people who walk in the front door who come here for their care, understand that the size and magnitude, and excellence of the Research Institute
And so, it’s partially my job to try to tell them. We’re doing this by promoting the research through social media, and just getting the word out about the fact that if you come to Mass General as a patient, the care that you’ll get here will be better, because of the research that’s being done. And we have over 2,000 clinical trials going on here, and so, as a patient, I can think of nowhere else I’d rather go.
Q: Two thousand clinical trials?
A: Yes. At any one time. Yep.
A: At any one time. So, you come here with some sickness, the chances are there is a clinical trial for you to participate in, or there’s different programs where we try to match researchers, match what they’re working on in the lab with what’s going on in the hospital, and patients that are coming in. And so, really building these bridges between the clinic, and the research is one of the strengths here.
Q: I’m curious, so the Research Institute was started four years ago? How has it evolved in that time?
A: The beauty of this place has always been – and people comment on this all the time. We have this have this model we like to call “Thousand Flowers Blooming. ” We bring the best people here, and we let them do whatever they want in terms of research. And what’s happened is we’ve built this amazing research enterprise that’s very broad, and covers nearly every topic that is relevant to human biology.
What we’re asking people to do with the Research Institute is instead of acting as individuals, to still do that science, but come together, and recognize that the strength of the research enterprise, as a whole, is bigger and better, basically. And that we can accomplish more together.
So, some of the things we’re doing in the Research Institute is building these broad-based cross-departmental teams, focused on a particular area. So, for example, neuroinflammation, and neurodegeneration. So, we bring together people in distant departments, and people that might not have realized that they were working on the same general area, bring them together.
And that’s when you see the magic happen, when you bring people together from different areas, get them talking to each other about their science, new collaborations happen, new ideas come out. So, we’re trying to change the culture from within – everyone has always been collaborative, but just to get people to think about the institution as a whole, and what their role in the institution is.
And they’re also trying to change the view from the outside looking in, such that one of the issues in the past has been that if you ask someone in industry in Boston, for example, they’re like, “Well, I don’t know who to talk to at Mass General. ” So, the Research Institute is meant to be kind of a front door, such that a donor, or an industry person can come in, and we can kind of be the clearing house to connect them with the right people.
Frequently, I think in the past, what would happen was there’s the same few people that everyone knew who were always getting connected, as opposed to maybe there’s a junior investigator doing something. So, we’re trying to understand what everybody’s doing.
Q: So, before it was kind of like they were the rock stars?
Q: And everybody else was back-up singers, and we’re trying to kind of uplift it –
Q: – and make it sort of a choir –
Q: – rather than –
A: I’d have to say, though, what’s unique about this place is I think everybody is the rock stars, but then you have those few that are like Beyoncé and Jay-Z, so we’re all rock stars.
Q: I’m wondering, too, if you can talk a little bit about your own career within research. You’ve been here your whole career, basically –
A: Right. Um hmm.
Q: – studying these two rare disorders. So, can you talk a little bit about what they are, and what you’ve done?
A: Yeah, sure,. I came here as a postdoctoral fellow in 1991. I’m trained in human genetics. I came here to work with a very famous human geneticist who was here, Jim Gusella, and at that time he was finding genes. When I was in graduate school in the ‘80s, what we did was we were building maps of genes, and this era of gene discovery of identifying the genes that cause human disease was really just beginning, and he was a leader in the field, and I had spent a lot of time making maps of genes.
And I said to myself, “I would like to go into the lab, and find these genes. ” So, I started working on FD, which is familial dysautonomia, which is also called hereditary sensory and autonomic neuropathy type III. Those are mouthfuls, but the way to think of this disease is really it’s a sensory and autonomic neuropathy. So, the patients don’t have proper development of their sensory nervous system, and their autonomic nervous system.
So, sensory is easy. We can all envision what that is – right? – feeling, and things like that. Autonomic is all the things that you don’t control – swallowing, digestion, control of your body temperature, control of blood pressure, things like that. Those are all the things we don’t – our bodies are doing on their own. But imagine if none of that worked – you can’t control your body temperature. You can’t control your blood pressure, so it could bottom out; it could go sky high.
So, it’s a devastating disease, and there was a woman who was working here, and who had begun the search for that gene. And so, I started working with her, and in 1992, I traveled to New York for something called “FD Day,” which a day when all the patients, and families get together, and so, I met a lot of the patients, and the families. it was amazing to me because it was really my first interaction with them, and they were just so appreciative that people were there, and interested in working on trying to help their kids.
And I’ve been back there every year since, except for two years – the years that my son, and daughter graduated high school. We continue to work on it to this day, and it’s really a devastating disorder in that when – about 30 or 40 years ago, most of the children died before they were five years old, because they can’t swallow properly. So, when they swallow, it would go into their lungs, and they would get pneumonia, and pass away.
Now, what happens with great medical care, we’re over that hurdle, except all these – autonomic neurological issues – lead to sudden death frequently. So, I can’t imagine what those families go through, because every morning when they wake up, and go into their child’s room, their worry is will they be alive, because they die of sudden death, so it’s a horrible thing.
And ML4 is called Mucolipidosis type IV, and it is a lysosomal storage disease. There are 40 different lysosomal storage diseases, and you may have heard of some of them – Gaucher’s disease, Tay-Sachs disease – there are some that are more household names than ML4. And this is a truly devastating disease for which we found the gene, and these kids – they appear normal when they’re born, but they start going downhill. They fail to meet their milestones after a few months, and they develop to the point of – mentally to the age of around 15 months. So, they don’t walk. They don’t talk. They go blind. So, it’s really a truly devastating thing.
And my connection there came through patients and families, as well. These are the most remarkable families I’ve ever met, because there’s nothing like watching parents of sick children try to help their kids – right? – and so, they’re so appreciative of any scientists who’s willing to work on it, and they’re demanding. They keep us on our toes. We’re too slow for them. And I really didn’t understand the depth of what they feel until I had been working on both these diseases for a few years, and then I had my first child.
And I remember the first time I went to FD Day after having my own child, it was just completely different to me, because I couldn’t imagine what I would do if my kid had one of these diseases. People ask, “How do you work on these for so long?” and, “Why do you stay engaged in this?” and it’s because of those people. They’ve been my champion as I’ve been theirs.
Q: Yeah. It’s interesting to hear, I think, – you think of a scientist, and you think of a person alone in a lab. So, it’s interesting to hear that there is this human piece of the work that you’re doing.
A: Yeah. It’s – I would say, it might not be true in all areas of science, but certainly the scientists, and the researchers who work at Mass General, because we’re all here to change healthcare in the future – right? We have very basic scientists, who work on worms in dishes, who then go see patients in a diabetes clinic.
And so, they’re looking at that worm thinking, “What is this worm going to tell me about understanding how a drug works, testing a drug in a worm?” And then they’re able to think about that as they’re with a patient. And I think that’s what sets a lot of the scientists apart that work at Mass General is our end game is not just scientific discovery; it is to help patients, and to change health care in the future.
Q: Can you talk a little bit about – you’ve clearly had a successful career. You’ve identified these genes. There are tests that now exist, but I imagine there have been some failures along the way, and what role does that play in your career, and in science as a whole?
A: I think science is 95 percent failure, which I think sometimes when the public hears that that is a negative, but if we didn’t have the failures, we’d never have the amazing discoveries. I run a summer student program here at the hospital, where I bring eight students every summer from a small liberal arts school in Florida to work in labs.
And I had a student come in one day, and she said, “Oh, my gosh, this has been such a life-changing experience for me, because I realize – I listen to people come, and give these amazing seminars, and their science is beautiful, and the results are beautiful, and it’s just amazing discovery. And now I realize that what we’re seeing is about 5% of the work that was done to get to that point.”
So, the failures are every day, but I don’t think of it as failure. I think of it as like a puzzle. So, you do an experiment in the lab, and you get results you don’t expect. And that is what is so energizing about it, because you’re like, “Huh, what does that mean?” And then we’d get together with – science is very much a team sport. No one does anything alone in the lab.
So, you get your results, and we have lab meetings all the time – right? – so, everybody in my group would get together, and we’d sit around looking at this result going, “What the heck does that mean?” And then, you begin to solve a puzzle. You come up with different hypotheses. And then we design more experiments to try to test those hypotheses.
So, that’s what’s so energizing about it. You could lose yourself in the time. You come back to this one mysterious result that you have that you just can’t figure out what that means. But it’s telling you something very important, something that we didn’t know before.
Q: So, I want to ask you a little bit more about how you figured out your career.
A: Right. Well, first I’ll tell you a little bit about how I ended up in this role that I’m in, because I think it’s an interesting story of personal development. You know, as you grow in your career as a scientist, what happens that many people don’t realize is we’re not in the lab anymore. So, you start out in the lab,and you are doing experiments, but then, very quickly you are not in the lab anymore, but the people who you’re training, and who do the work for you are in the lab.
So, we spend most of our time as scientists writing, reading, trying to get grants, writing papers, things like that.
Very early on, I got involved in the administrative aspects of research at the hospital, and it’s really a personality-driven thing, right? I really cared about my fellow scientists, and I really wanted to make things better here for the research enterprise. And so, I was the person that you found like virtually on every committee in the hospital.
You know, every time they needed a committee to look at X, Y, or Z, I was on it. My scientific career was going very well. But when they were – when they decided to launch the Research Institute, I was sitting with one of my colleagues in the audience listening to research leadership present the idea behind this Research Institute, and the fact that they were going to hire a scientific director.
And they described the role of the scientific director, and my friend leans over, and he whispers in my ear. He said, “I don’t mean to insult you, but you would be really good at that job. ” And I like looked at him, because it’s almost an insult to suggest that a scientist shouldn’t do their science.
You know, what he said really got me thinking about it, and I thought, you know, I could have an impact, and make a difference in how research is viewed here.
And so, that’s the beauty, and also the thing that is crazy. I work a lot more now than I did before, because I’m really 60% Research Institute and 40% my lab. And at first I didn’t have specific days. I didn’t – I just was doing both things. I’d go to some meetings, and I would go back, and have a lab meeting, and I realized very quickly that these two things were totally different, and I had to preserve my time to think about science, and be engaged deep in science.
So, very quickly I realized I had to completely preserve entire days. I started spending Wednesdays and Thursdays in my lab, so that I could work with my team. Especially during this drug development process. There were times, more times than I cared to count, where my entire lab team, we were all sitting around my office at midnight, with me telling them, “How are you people going to get home?”
You know what I mean? So – and that happens a lot. So, I needed to have that time to do that. So, it’s definitely difficult, because nothing has changed about my lab, but the other thing that I have – I’m very lucky – is I have remarkable people, who work for me, both in my lab, and in the Research Institute, and they really help manage everything.
Q: I’m wondering. I always, when I read about scientific discoveries, I always think, like, “Who even though of that? How did they even come up with this idea that this thing could be connected to that thing?” So, has there been – is there a moment in your career that was one of those moments where you had the spark that you go back to?”
A: Spark? I guess, it’s less – science is very incremental. So, I’m sure Einstein sat around, and went, “Aha! This is clearly the equation. ” Most scientists aren’t having these epiphanies like that. It’s more an incremental – you find a result; you learn something from it; you go on, and do another experiment, and learn something from it.
I’d say that one of the moments that I remember so clearly in my career is for FD, we identified the gene, and then we identified the mechanism of the mutation that was actually causing the disease.
It affects something called “RNA splicing” – and when we looked at what was happening, we said, “Huh, I wonder if we could correct that?” And so, we participated in a screen that was set up by NIH to test 1,000 compounds, and to see if we could fix it. So, in a dish – it was painstaking at that time; it wasn’t high throughput. I had a technician who worked in my lab, who basically took FD cells that were in a dish and dumped 1,000 compounds on them, and looked to see if it got better.
And one day we come in and we looked at the results, and there was one of the compounds that corrected it. And we just sat around that day, all of us looking at each other, like, “Oh, my gosh!” The thought that we might actually be able to help these patients, because by this time, the year was maybe 2005-2006, I think the field recognized that the promise of human genetics, when we were looking for genes in the ‘90s, a lot of people felt, and I think patients felt that if we could only find the gene, we could fix it.
So, we know now that that isn’t the way things turned out – right? – we’re moving in that direction, but we still needed a lot of work between identifying the gene, and fixing it. And so, with that discovery of this compound that fixed it, we were like, “Maybe this would actually work. ” And I remember coming over – my lab was over at Harvard Medical School at that time, and then I remember coming over, and saying to Jim – walking into his office, and saying, “Do you think we might actually be able to help these kids? That would be amazing. ”
And so, that was really like such an amazing moment when we first found that, and we’re still working on that.
And so, I went on with NIH help to participate in what’s called the “Blueprint Neurotherapeutics Network,” where we did medicinal chemistry on that compound, and improved it, significantly over a few years, and the project was licensed by a company three years ago, and and we’re getting very close to declaring a clinical candidate. So, it’s a very real possibility that within the next few years we’ll be testing a drug in these patients. It’s hard to believe, because most of the time it takes a lot longer than that.
Q: That’s incredible. When things are so incremental it can be hard to see the finish line –
Q: – but it sounds like hope –
Q: – is an important piece of the puzzle?
A: Um hmm. Absolutely. I was giving a lecture recently to some – I was at the University of Pittsburgh. I was talking about this work, and about how we found the gene, and then we found this compound, and how we’re developing this drug. And after the lecture was over, all of the faculty left, and the students stayed.
And this young woman puts up her hand, and she said, “You have been doing this for 25 years? How can you be so enthusiastic?” And I just looked at her, and said, “If you’re in graduate school, you better find what makes you that excited, whatever it is, because that’s…” – if you talk to scientists, everybody has something.
You get them talking about their work, really no one can understand what they’re talking about, but you can tell, they are so excited about it. You know what I mean? That’s one of the funny things about scientists.
It’s actually one of the things we’re trying to do in the Research Institute, is to – we do a lot of work on communicating science, trying to teach our investigators how to better communicate their science with lay people.
And I think that’s part of the problem with people’s views on science in this country is that they hear scientific terms, which we use all the time, this jargon, and they immediately shutdown.
They might not understand all the molecular aspects of it, but when you get scientists who are really good at telling lay people why their science is important, people are fascinated. And so, we need to get more people like that out there, and more stories like that about science out there, so that people appreciate why we’re doing what we’re doing.
Q: Yeah. And it kind of feels like magic when it is explained in a way that a lay person can understand it.
A: Right, exactly. All the science is amazing, but we have to get people to do a better job, and I think that being able to present it in such a way. I always tell people, “How would you explain what you do to your grandma?” Think about it that way.
But we need coaching in order to do that.
Q: I want to go back to what the graduate student said about finding your niche, and finding something you’re really excited about. What advice do you give to younger scientists, or students who are trying to figure out where they fit?
A: I mean, people still are – they’re still entering science at the same rates. I believe what’s happened over the last several years is that we’re losing a lot of them. They’re remarkably bright, and they’re remarkably curious, and they have this passion for science. Most of them, like me, they’re in middle school, and they just think science is the coolest thing they’ve ever heard, and they have to be a scientist, or a doctor, or whatever.
And so, they enter science. But then, you start hitting these walls of how difficult it is, right? And so, I always try to tell young people – you have to find what you’re passionate about, and I think that’s true in any field. I tell them to take advantage of as many experiences as they can.
So, the summer program that I run, I’ve had 64 kids come through the labs here, and they’re in undergraduate. They’re either rising juniors or seniors. I spend a lot of time talking to them over the summer. And they come to the labs, and some of them come to my office, and they’re a little sheepish, because they’ll say, “I don’t like this. ” And I say, “Aren’t you glad you figured that out in ten weeks, instead of going through college, and going to graduate school, and then figuring that out, right?”
And so, I’m always trying to set up meetings with people, and getting people to shadow people, but you have to spend a lot of time trying to figure out what is it that excites you in science?
Q: So, I want to pivot a little bit. We’ve been talking a lot about your career as a scientist, but turn to talk a little bit more about your leadership role at the Research Institute. As a leader, you’re really the person who has the reins to set the workplace culture. I’m curious, how do you think of that in terms of making it a place that is welcoming, and a place of success for everybody?
A: It’s something that I struggle with, because science has become very difficult, and it’s become very difficult because of something we refer to as “unproductive anxiety. ” As a scientist you always – you want to be on the edge. You want people to fight for what they’re after, and you want people to be a little anxious, but you don’t want it to get to the point where it’s completely unproductive.
And I’m afraid that that’s where we’ve been over the last several years. Our research program has continued to grow, but the percentage of that that comes from NIH funding has dropped over the last ten years from 58% to 41%. So, NIH funding is different than most of the other types of funding that scientists receive. You’re generally given a substantial sum of money for five years, which really gives you time to focus on the science.
As funding has been reduced from NIH, it’s become more and more difficult. So, that’s very anxiety-producing. We submit grants, and really remarkable people aren’t getting their grants, and it creates a lot of anxiety, because not only do we bring in our own salaries here from our grants, we’re responsible for everybody who works for us, too, right?
It’s basically like running your own small business, your own – you’re an entrepreneur. You’re bringing in money, and you’re running your operation. So, our scientists are very good at finding other dollars, but the other dollars come from foundations, and these are generally smaller amounts of money for shorter periods of time.
So, imagine – science is not a fast process, you get a grant from a foundation for a year. So, great. You have $100,000 for a year. It sounds like a lot, except that that’s not enough time to really do much, and then you have to spend part of that time worrying about where you’re going to get your next amount of money. So, that’s the issue with the way science funding has changed.
So, in the Research Institute, what we’re trying to do is to attract philanthropy to help support the research enterprise, to increase our interactions with industry. Industry in Boston has boomed. Biotech in the Cambridge area has just gone through the roof, and we have the R&D that they need. And so, we just need to make these connections.
Q: And I know – I’ve seen a lot of articles in the press lately about the particular challenges of being a woman in science. Can you talk a little bit about that?
A: Yeah. I just read this article yesterday. It was fascinating to me, because it was so true in that certainly everyone would agree women are not the same as men. Okay. So, that’s the bottom line. And so, what’s different between a woman scientist, and a man scientist, or a woman professor, and a male professor? What this article was saying that I found so true is women absorb, or perform significantly more service duties, if you will, things like being on committees, running searches, organizing seminars, mentoring students.
And what they were looking at in this article was the perception that even the students have of women. And so, women end up with a disproportionately large number of students who have problems come to them, because they actively seek out women instead of men. So, there’s this emotional burden of dealing with this, and it’s just very true.
I mean, and people expect the women to be nicer, and more nurturing, and have more empathy than they do of the men.
I also think there’s – as I’m a mom, and I had my children as my – when – as my career was – I was not young, but my career was relatively young. That’s how it goes in science.
And thinking back on those times, it’s very difficult. As I said, the balance is difficult, and I think that we need to figure out how to do a much better job of supporting women through those crucial years, because I think then – supporting women early, and often during those really crucial years is vital to their success in the future.
Q: And what does that support look like?
A: You know, it can take many different routes. The easiest answer to that is money. But that’s not the sole answer. Having women role models, and mentors is vitally important; you know, frequently when you’re young, and you might have one person, or half a person who’s working with you to do your science, and you’re physically in the lab trying to do work.
But then, you’re pregnant, and you’re out. Then the work stops, right? So, providing support for women, such that they could hire someone, so the work doesn’t stop in their lab when they’re not there, is vitally important.
We have a program here at Mass General called the “Claflin Awards,” and they’re given at this very crucial time, early childrearing years. And if you look at some of these women that have come through that program today, they’re some of our leaders here at the institution.
Q: How has your career changed? As your personal life changed, and your family grew, how did those two things interact?
A: Yeah. I think when my kids were little – there’s always these decision points in order to get promoted as a scientist, there are stages. So, when you’re promoted to an associate professor, you have to have a national reputation. And when you become a full professor, you have to have international reputation. So, as a scientist, how do you build an international reputation? You do great work, and you publish great papers, but you travel.
When someone invites you to go to Denmark, and give a talk, to go to Japan, and give a talk, you need to go. That’s very, very difficult, because it’s the times that you need to be doing that is also when you generally have a young family. And it’s just very difficult for moms to travel, especially if you have an infant, or if you’re nursing. So, there’s always these decisions to be made, and they can be very difficult, right?
We have an Office for Research Career Development here, and they do give some small awards to help people with this, maybe provide child care, or enable someone to take a child, – but there’s still this – I fear this, you see somebody with – at a meeting with a baby. If it’s a mom, it’s a problem. If it’s a dad, he’s a hero for bringing his baby, and carrying it around a meeting, because he’s in charge of the child.
It’s like when I used to travel when my kids were little, and when I would travel, everybody delivered dinner to my husband every day, because he was home with these two little kids every day. If he traveled, no one ever brought me a speck of food. So, why was it different? I still give them a hard time about that – my neighbors – like, why didn’t they bring me dinner, when he was away?
Q: How do you think we go about changing that?
A: Yeah. It’s hard. I’d like to think that it’s with the younger generation the views are changing. I have a son who’s about to be 21. He’s in college. And I’d like to think that because I was his mom, his views of women leaders, and women’s ability to work, and raise a family, and everything is completely different. I think he’s blind to that.
I’d like to think that if you look at some small startup companies, where everybody’s in their mid-twenties, I’d like to think that none of these old cultural beliefs about women and men, and everything are there. And I’ll be they’re not. But then, when you take these young people even with their beliefs, and you put them into a business, or a large firm of some type, or a hospital, or something where there’s a lot of older people that they see, I think it’s still around. So, I’d like to think that as strong women raise good sons that some of these views will change – and more strong women.
Q: Absolutely, and I think the thing I’ve noticed is early in your career it’s really easy to think the world is my oyster; I can do anything. And then you get a little older, and I’ve watched my friends hit those barriers, and it’s hard to know what to do.
A: It’s really hard, and in science – it’s interesting. We’ve worried so much about young scientists, rightfully so, we should. And then, you have the very senior people, people who are towards the end of their career, who have figured the system out, and they’re doing okay. But we have a lot of mid-career people who are really struggling, and this is the time where you have teenagers; you’re thinking about sending kids to college; you can’t get your grants renewed.
I mean, it’s a very difficult time, and it’s a time when in other fields, people are hitting their career strides – you know what I mean? – and in science it’s a very vulnerable time, because gone are those protections of the early career, and you’re not quite at the point where you have funding, and no one’s going to not give you your grant.
Q: Yeah. So, there’s kind of unique challenges at different points –
A: Right, right.
A: I remind myself all the time of this story when I first had my son. I think it’s so vital. I mentor a lot of young women, and the thing I try to share with everybody is this idea – something that we never think of – that while we’re raising – you have this guilt, this mother’s guilt – right? – you’re not with your kids, and they’re sick, and you’re not there.
Or you’re the mom who like shoves them full of Motrin, and sends them to daycare, and prays they don’t call till the afternoon, just so you could get to work. But when I first had my son, I was talking to my graduate mentor – and I said, “I don’t know if I can do this. ” I was just back at work, and I felt horrible, and I was nursing, and he’s in daycare, and I’m trying to run my lab, and it was a crazy time.
And I said, “I just don’t know if I can do this. I don’t know if this is worth it. ” And he said to me, “You can’t think of it like that. The work you’re doing is so important, and your children will be so proud of you someday. ” And I really stopped to think. We all as – parents talk about being proud of their children, but we never assume that our children are proud of us, but they should be, because it’s hard to raise them, and do your jobs for both men and women.
And when you start turning that perspective a little, and thinking that whenever you feel guilty, and you feel, “Well, maybe I won’t go on that trip, because my son has a recorder concert in fourth grade. ” You think, “No. You know what? That trip is really important. He’ll be okay if I’m not there, and he will be very proud of me. ”
And it took a long time, and it took until my kids were like teenagers, and they’ve never actually said those words to me, but I’ve had friends who have said, “You should hear your son and daughter talk about what you do. They’re clearly very proud of you. ” And so, I try to tell people that when they’re struggling, they know what they’re doing is important.
Remember that the kids are going to be fine. Kids are remarkably resilient. They get over it when you’re not there. And they will be so proud of you, and it’s important that we’re role models for them.
Q: You talked a little bit about those questions as a mom of, “Am I doing the right thing? Should I continue?” How do you determine that?
A: Right. I guess, you know, it’s interesting, because it’s such a personal decision, and something that you really have to ask yourself, and part of it is economic. Let’s be honest. I mean, I was never in a position to not work. So, I’d be lying if I said that didn’t enter into my decision-making process at all. So, I think it’s a very personal decision, but it’s interesting, as I watch younger women, I really feel – I watch people who are young scientists, and I watch them in the lab, and then they come to me, and they say, “I’m going to have a baby. ”
And I’m so excited for them. I have a lot of women in my lab, and I’ve had a lot of babies born. And I can kind of predict the ones who are going to be able to do it. They’re going to be great moms, and they’re going to be great scientists, and they are going to come back.
So, I guess my answer to your question is it’s intensely personal. And you do kind of know, but I think that the people who are going to succeed, and be remarkable scientists could no sooner leave their science than they could leave their kids. And so, they figure out to make it work.
Q: I’m curious to ask you, Sue, you mentioned working with the drug companies looking for a cure?
A: Um hmm.
Q: What happens when you find it? What do you do?
A: Yeah. I don’t know. I mean, it’s a long road. We’re about to declare a clinical candidate, but then you have to go through the whole process of getting it through the FDA, and getting it into kids, and then seeing if it will work, and it’s not going to be like a headache, where you take a pill, and your headache goes away.
These diseases are – have been lifelong, and they’re developmental. So, we’re unlikely going to cure the disease. We call these “disease modifying therapies. ” Will it really have a long-term impact? And so, my goal for this has always been that.
As these kids with FD age, they develop severe ataxia; they’re not able to walk. They have some psychiatric symptoms and dementia. And so, our goal with this would really be, can we improve their quality of life, and can we stop some of these things that happen as they continue to age? And certainly if we can treat kids – as more kids are born, if we can treat them younger, can we prevent a lot of the things that happen in the disease? That’s certainly a goal. But what happens after, I really haven’t thought about that too much. It just still seems like even though we’ve come so far, it still seems like kind of a long road, but I’m seriously considering a beach chair.
Q: It sounds like a good option to me. [Laughter]
Q: All right. Before I let you go, I have my final five questions.
Q: What’s the best advice you’ve ever gotten?
A: To remember that as your – your children will be proud of you.
Q: The name of this podcast is “Charged. ” What does that word mean to you?
Q: Great. And how do you recharge?
A: I completely disconnect, which I know people can’t do. I can go away for the weekend, and completely forget who I am, and not even tell people, what I do, I have that ability to completely turn this off, which I think is so important. So, I love the beach. I didn’t grow up near the beach, but I went to college in Florida, and spent a lot of time on the beach, and it’s still like my happy place.
Q: What’s your favorite beach?
A: Well, Saint Pete Beach, but I go to Nantasket here.
Q: Great. When and where are you happiest?
A: Hmm. That’s a hard one. I mean, I’m a generally happy person. So I can think of many instances during the day when I’m happy. I think when I see the work that we’re doing, both in my lab, and in the Research Institute, and see that it’s helping other people, I think it makes me remarkably happy, to think that we’re making a difference.
Q: Last question: What rituals help you have a successful day?
A: The first thing I do in the morning is I like go on my phone, which might not be the most – you know, the best thing to do, but I read Stat, which is like these little short bullets of what’s happening in science and medicine. I read like these very short snippets of CNN.
I just like kind of touch base, and then before I go to bed, I look at my calendar for the next day. I kind of live and breathe by my calendar, which is full all day, I’m sad to say. And so, I just sit there, and mentally prepare, like, “What do I have to do for tomorrow?”
Q: All right. Well thank you so much, Sue.
A: Thank you.
Q: It’s such a pleasure to talk with you, and to hear about your work at the Research Institute.
A: Thank you.