Conversations with members of the Harvard and Radcliffe Class of 1992.
Hosted by Will Bachman.

Episode: 83

Peter Kang, Pediatric Neurologist and Director of Muscular Dystrophy Center

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Show notes

In this episode of The 92 Report, Peter Kang attended medical school in Philadelphia where he had a wonderful experience at the University of Pennsylvania, learning about different fields and cultures, and making friends. One pivotal moment in medical school was during a physician patient relationship course led by a thoughtful psychiatrist who reminded him that it’s a routine experience for the doctors, but it could be one of the most pivotal moments in the patient’s life, and they can remember everything about their encounters, which has been helpful to him throughout his career.


A Career in Pediatric Neurology

Peter chose pediatric neurology as his field of study, completing most of his training in Philadelphia and New Haven. He spent over a decade in Boston, where he gained valuable exposure to both the Boston area and New England. His mentorship from a well-known geneticist, Luke Konkel, helped fill a crucial gap in his career as a physician scientist. This experience gave him a strong background in genetics and has been useful to him up to this day. Peter’s research interests include rare diseases. In his clinic work, he deals with these patients daily, as they might be one of only a few dozen people in the United States with that particular diagnosis. The challenge is finding enough patients to prove that a treatment works or an idea about the disease is valid. Peter also runs a research laboratory and spends much of his time supervising the lab. However, he finds it both interesting and useful to be able to connect his work in the lab with his work in the clinic. 


Genomics Research and Genetic Diseases

Peter discusses his experience running a research lab and how it has evolved over the years. He started his independent research laboratory in Boston and later moved to Florida in 2013. He learned about running a lab from his mentor, which involved a lot of subtleties and was a lot like running a small business in terms of financing, grant applications, and hiring and managing personnel etc. The lab’s focus is on genomics research, which helps identify patients with genetic diseases that don’t have clear diagnoses. He explains some of the difficulties they run into and how they approach mystery diagnosis.Peter is currently a professor at the University of Minnesota, where his lab is based. He moved to Minnesota during the COVID pandemic. He and his wife were initially excited about moving to Minnesota.The move was motivated by the opportunity to work with a renowned muscular dystrophy center at the University of Minnesota, which had a unique focus on the condition. 


Finding Solutions to Mystery Diagnosis

Peter’s lab has been working on finding solutions to mystery diagnosis in genetic testing, which has been a focus for over a decade. He believes that genetic testing can help solve these mysteries and is working towards a more accurate understanding of genetic diseases. Peter discusses the challenges of treating rare neurological diseases, particularly in children. He highlights two types of diseases that have been challenging to diagnose and treat: muscular dystrophy and spinal muscular atrophy. Muscular dystrophy is a childhood disease, with milder forms starting in adulthood. Duchenne muscular dystrophy is a well-known example, with patients often experiencing difficulty walking and falling as they grow older. Genetic testing has become more effective in diagnosing these diseases, but there are still shortened life expectancies and increased dependence on others for activities. Spinal muscular atrophy is another type of disease that is not technically classified as muscular dystrophy but is also seen in neuromuscular specialists. The most severe form of this disease was typically fatal by the age of two years due to motor neuron loss in the spinal cord. However, in 2016, the first FDA treatment for spinal muscular atrophy was approved, which has helped children to walk normally and avoid ventilators.


Screening Programs and Metabolic Disorders

Peter talks about the newborn screening programs that have been around for several decades, with each state offering slightly different panels of tests. The original screening tests focused on metabolic disorders, which could be treated by eliminating certain nutrients from the baby’s diet. Newborn screening has evolved to include spinal muscular atrophy and genetically based tests. Some metabolic disorder diseases have been cured now, with some being cured through diet changes and new therapies being developed. However, Peter highlights the fact that the exact cure depends on how the word “cure” is applied, which is a topic of discussion among inpatient communities. Overall, he emphasizes the importance of early detection and treatment for rare neurological diseases to improve outcomes and overall health. Peter discusses his experiences dealing with pediatric patients and how he is constantly developing his interaction skills. He emphasizes the importance of understanding the patient’s perspective and avoiding taking sides. He also shares his experience of dealing with multiple people in the room, including parents and spouses, and how to navigate these conversations effectively.


Challenges in Pediatric Medicine

One challenge in pediatric medicine is dealing with multiple people, and sometimes there may be a difference of opinion between the child and their parent. To address this, he suggests documenting both sides of the medical record and discussing the perspectives of both parties. When discussing a child with muscular dystrophy, he advises communicating the diagnosis to the parents and the child, considering their age and preferences. He also advises being candid about the prognosis and focusing on the positives. He does not spontaneously discuss life expectancy during clinic visits due to its unpredictable nature and the hope that new therapies will come online for these patients.


Advances in Biotechnology

Peter talks about advancements in biotechnology. In the past few years, there has been an inflection point in biotech with advancements like RNAi, Moderna, and other technologies. There is an incredible array of technologies available that were not available in the past, such as small molecules, gene therapies, stem cells, and proteins. The interaction between academia and the biotech industry has become more collaborative, and there is a better understanding that they are working towards the same goals. Peter states that, in the future, there will be more genetic or molecular solutions specific to certain targets for treating both rare and common diseases. This specificity will continue to grow, and there will be ways to accelerate the pace of developing tailored treatments.


Harvard Courses and Professors on Influence

Peter mentions two gratifying courses that still resonate with him today. One was Philosophy 168, taught by John Rawls, which helped him understand Kant’s ethical theory and how to see things from a different perspective. Another course was Expository Writing 52, taught by Richard Marius, who showed him how powerful writing could be and how words can influence people’s behavior. Peter believes these courses have helped him develop confidence in his writing abilities and have prepared him for the challenges of personalized medicine in the coming decades. He is looking forward to the developments in the biotech sector and the potential for personalized medicine to become more of a reality. He recalls a conversation with Richard Marius, who encouraged him to bring the story to life and that it’s okay to write about one’s family. He also discusses how his education as a philosopher major has helped him with thinking and analysis,and achieving clarity around a particular issue or ethical dilemma. He uses this knowledge to resolve complex issues and helps patients make informed decisions about therapy options.

On a global scale, Peter addresses the resource allocation for Rare Disease Research, which is a thorny problem due to limited resources. He believes that it’s crucial to not let individuals with rare diseases be left behind, as they often feel isolated and struggle to find others who understand their condition. 



04:20 Rare disease research and clinical practice

08:52 Running a research lab, genomics research, and mystery diagnoses

14:03 Muscular dystrophy diagnosis and treatment

20:00 Treating and curing neuromuscular diseases in children

28:26 Communicating with children about serious illnesses

32:57 Rare disease diagnosis and potential treatments

38:13 Personalized medicine, gene editing, and philosophy

43:00 Writing skills, ethical dilemmas, and rare diseases



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92-83 Peter Kang


Will Bachman, Peter Kang


Will Bachman  00:01

Hello, and welcome to the 92 report conversations with members of the Harvard and Radcliffe class of 1992. I’m your host will Bachman. And I’m excited to be here today with Peter Kang. Peter, welcome to the show.


Peter Kang  00:14

Thank you. Well, I really appreciate you inviting me to join you.


Will Bachman  00:18

So Peter, tell me about your journey since graduating from Harvard.


Peter Kang  00:23

It’s, it’s been an interesting journey. And I had, I appreciate this opportunity to reflect on it. The one of the pivotal moments that started my journey after graduation happened during my senior year, which I’ll only talk about for a minute. It was during I think, the winter break. And I was staying with my parents in New York City and had a medical school interview scheduled at the University of Pennsylvania and I had been on the interview trail for medical school admissions for a little while. And so and so this one should have been fairly straightforward. I was planning to take the train from Penn Station on Amtrak, go to Philadelphia, go to my interview and come back the same day. So my parents were nice enough to drop me off at Penn Station pretty early in the morning, it was around six, I think. And I went down to the station after saying goodbye to them. And then I realized that I had left my wallet at home. And there was no way that I could retrieve or purchase my tickets to Philadelphia. And so of course, that was a moment of great panic. And I managed to find a payphone. And I had some change in my pocket. So I was able to call my parents when they got home and let them know about this. And I was hoping that they could retrieve my wallet and bring it to me. And so they came back all the way into Manhattan from Queens. And I thought they would just hand me my wallet. And I would catch a later train and end up being late for the interview and salvage what I could. But when they arrived, they told me to hop in and they ended up driving me straight down to Philadelphia. So that’s where I ended up going to medical school at the University of Pennsylvania. So I’ll be forever grateful to them for that, for that car ride. So that’s sort of where my post graduation journey began, was on that day. So I, I went to medical school at the University of Pennsylvania, and had a really wonderful experience there. It was, it was a totally new world. And I didn’t know much about Philadelphia at the time. So it was a good opportunity to learn a lot and make friends and, and as I’ve discovered, during a lot of this journey, a lot of what I’ve learned about different fields and, and, and different groups is really more about cultures and approaches, and a little bit less about the content, which of course is important also. And one pivotal moment in medical school that I still remember today was during the first year, when we had required physician patient relationship course. And and the our little group was led by a psychiatrist who was very thoughtful. And he, he told us during one of the sessions, and I still remember him saying this, that when when we go into a patient room, it’s a fairly routine day for us. Usually we go in we see a patient and it’s one of many patient encounters we have that day in that week, buddy reminded us that for the patient, if you look at it from their perspective, it could be one of the most pivotal moments in their lives, you could be giving them a pretty serious diagnosis or discussing major treatment options that could change their life. And he said that they could remember everything about that encounter, including what you’re wearing, what color your clothes are, every word that you say. And so he told us to remember that and I still do and that’s something that still rattles around in my head during clinic on on uncertain days. So that was one of the one of the more helpful things that I learned during medical school. And And towards the end, I ended up choosing my field of pediatric neurology, which, which has turned out to be really rewarding. And I did most of my training, either in Philadelphia and New Haven. And and then after those periods, I ended up in Boston again in the Boston area again, for over a decade. The period that I was in Boston was mostly in the 2000s in early 2000 10s. And that was really transformational for me during my undergraduate years. I didn’t really have Have a lot of opportunities to explore the area outside of Cambridge. So I really got a better exposure to both the Boston area and New England. But intellectually, it was really a transformative period for me, because I really got into neuro genetics research, in large part because of the mentorship of a fairly well known geneticist, Luke conkel, who is at Boston Children’s Hospital. And so I spent several years training in his laboratory, I don’t have a PhD, I just have an MD. And so this helped fill a crucial gap in me becoming a physician scientist. And so, so this, this was a really unique opportunity to learn from a really talented scientist. And that’s what gave me a strong background in genetics, which has been useful to me up to this day,


Will Bachman  05:58

and walked me through and taught me about your practice, you mentioned the clinic, and that you’re a physician scientist, are you currently doing research in addition to practicing, as a clinician,


Peter Kang  06:09

I do primarily research and I still see patients, that is an important part of my identity. And it ties in pretty well with my research. One thing that I became involved in, or one aspect of what I became involved in that I didn’t realize was unusual at the time is that everything that I study is a rare disease. And I guess that was predestined when I chose the field of pediatric neurology, because that, that already gets us into the realm of rare diseases. And that term wasn’t used quite as much back when I started, even though it was recognized, but it’s it’s something that I deal with on a daily basis. Because when I go to clinic, when I see certain patients, they might be one of only a few dozen patients in the United States who have that diagnosis. And, and then so when I tie it into my research, one of the issues that we face constantly refer diseases is how do we figure out scientifically valid studies to both diagnose and treat these patients? And, and statistical analysis has become a really important part of biomedical research. And so the issue that we face constantly is, how do we find enough patients so that we can prove that a certain treatment works, or that a certain idea we have about the diseases is valid. And so it’s been an interesting puzzle, and we’ve made a lot of progress and come up with different strategies to handle it. And so, so I run a research laboratory right now. And a lot of my time is spent supervising the lab personnel. And the focus right now of my research is muscular dystrophy. So we spend a lot of time thinking about muscular dystrophy and how to diagnose it better, and how to treat it better. And, and we’re also branching out into more of what we call translational research, where we try to take new therapies that are developed in the laboratory, bring them to the clinic and testament clinic. And, and that’s been recently a very rewarding part of the research program that I have. And and when I go to clinic, it’s it’s really nice to tie in what we’re doing on the research side with what’s going on in clinic. And we try as much as possible to connect the two and and oftentimes we’re successful.


Will Bachman  08:52

In what does it mean to be a research lab? So is this like the kind of fundamental research looking at cells or is that treating patients in the research lab, but in a kind of scientific, you know, doing doing some kind of trials or


Peter Kang  09:13

so I started I started my independent research laboratory when I during the last years when I was in Boston, and then it it really blossomed when I moved to Florida in 2013. And, and so running a laboratory is it’s one of the those intangible things that I learned from my mentor that I wasn’t expecting to learn when I started working in his lab. So my expectation when I walked into his laboratory was that I learned how to do experiments, how to troubleshoot experiments, and how to write grants and papers. And so that of course, I did learn but I think what I didn’t realize I had to learn and I didn’t realize it until Laughter words was, was how to run a laboratory. And there, there are a lot of subtleties to it, it’s almost like running a small business, you have to get grants or philanthropic donations to support the laboratory. And you have to watch the budget, you have to hire personnel. And it is quite an operation regardless of the size. And, and so it’s an involves a fair amount of involvement. And, and the people working in the lab are people that I feel responsible for, and trying to make sure that they’re not only that they’re doing well, but they they do well overall in their careers. So the so we go from as much detail as me looking at data from individual experience experiments, all the way through, working with people to put together manuscripts and grants and then giving them career advice. And so it’s, it’s a fairly intense experience. And, and then also, and then also, there’s the there’s the science of it, which I find endlessly fascinating. What we do a lot of in the lab is genomics research. And something that is sometimes not recognized fully is that there are a lot of patients out there with genetic diseases that don’t have clear diagnoses. And so this happens both in the clinic and also in the research setting where we find out or hear from patients who have unknown genetic diagnoses. And with all the advanced technologies we have with exome sequencing, genome sequencing that that’s talked about a lot. It’s a little bit surprising. But one thing, because we do get into the weeds of, of genetic analysis that we have discovered and others have also is that there’s there’s a lot that goes into the interpretation of genetic test reports, there are technical problems that can come up. And so it’s not trivial to find somebody’s diagnosis. And a lot of times, it’s still not possible. So we try to stay at the cutting edge of what, what genetic testing can do and try to figure out what’s going on with these mystery diagnoses? And can we help solve them? And so that’s something we’ve been working on for over a decade in my lab.


Will Bachman  12:38

And you said, you started an independent research lab, is this affiliated with an academic institution, or just completely independent sort of organization that you get funding from donors or whoever?


Peter Kang  12:52

Oh, yes, I meant independent in the sense of, in the sense of it being a standalone within an academic institution. So I’m currently a professor at the University of Minnesota. And so my laboratory is based there, and, and that’s the setting that we’ve had for a while. So, in Florida, I was at the University of Florida, and we were there for seven years. And in 2021, we moved to Minnesota, it’s been pretty interesting. Moving around the country, to different settings, we actually moved to Minnesota, in the middle of the COVID pandemic, and also in the middle of winter, which people thought was pretty brave. Moving from Florida to Minnesota in January. So


Will Bachman  13:42

brave is not is not the word that necessarily everyone would choose. What motivated you to move from Florida to Minnesota? And did you have to like, you know, get all your lab employees to come along with you. That’s mean, that’s a big, big change and, and almost sort of counter direction. A lot of people are moving to Florida during during COVID. I’m curious, what was driving that?


Peter Kang  14:06

So that reminds me of the first time I brought my car in for service when we moved to Minnesota and I and the gentleman at the desk, you know, asked me if I’d been to that place before. And I said no, we just moved here from Florida. And he just looked absolutely stunned. And he said, you moved here from Florida. And I could tell that he was just trying to understand why anyone would do that. So we were pretty happy in Florida. And our labs are running well. I was the chief of pediatric neurology at the University of Florida and and we’re doing quite well. But this opportunity came up in Minnesota that really was unique, and I saw that there’d be He opportunities to really take my research in a new direction in the field of muscular dystrophy, there’s a renowned muscular dystrophy Center here at the University of Minnesota, and they were looking for a new director. And there aren’t that many universities that have this type of center focus just on muscular dystrophy. And so when they first approached me, I was really intrigued. And my wife was also my wife is a researcher with a PhD and her lab collaborates with my lab. So we were really intrigued from the beginning. And this was before the pandemic or just before and we interviewed and we were thinking about it. And we were thinking, Well, if we plan it, right, and this works out, we can try to move in the summer. And that would be good for a number of reasons for kids school schedules, and things like that. And, and then, of course, the pandemic hit, and everything went quiet for a while. And we thought, well, I guess that’s not working out, we should just work on getting through the pandemic, and, and keep doing our work here in Florida. But after the first few months of of shutdowns, the people at the University of Minnesota came back and, and they were really excited about the idea of us coming. And and the more I found out about the opportunity, the more exciting it became. And so that’s why we why we ended up well, that’s why we ended up moving here, and also why we ended up moving in the middle of winter as the timeline was completely shifted, due to the pandemic delay. So So yeah, it was it was fortunate that we had spent some time in Boston, we were used to snow and cold. And so it wasn’t a dramatic adjustment, although I have to admit, I had not experienced minus 20 degree weather on a regular basis before moving here. So. So that’s been interesting. That sounds brutal.


Will Bachman  17:09

Could you tell us a bit about the patients that you’ve worked with, and some of the advances that have been coming along? You know, any disease is tough for any patient. But, you know, it’s particularly tough when you’re dealing with kids. And I can just imagine, as a parent, you know, if your kid has some rare neurological disease, how terrible that must be. Could you talk about, you know, some of the stories from patients that you’ve, you’ve helped?


Peter Kang  17:43

So, yeah, there’s a number of patients, there’s one of the, one of the diseases that I work with is muscular dystrophy. And there are issues with both diagnosis and treatment. And, and these are typically childhood diseases, although there are milder forms that started in adulthood. And so with the most well known one, Duchenne muscular dystrophy, you have, it’s typically boys because it’s an X linked disorder, the boy starts out doing okay, but then usually as a toddler, his parents noticed that he’s having more trouble walking, and falls a bit, and they would bring him to the pediatrician. And sooner or later, sometimes not at the first visit, but eventually, some blood tests start getting sent and then they realize something is not right. And back in the old days, when I was in med school or so, they we still did a lot of muscle biopsies to diagnose diseases like muscular dystrophy, but in the 1980s, the gene for Duchenne muscular dystrophy was discovered, and that was one of the first genes linked to an inherited disease. And so everything changed with diagnosis after that. And, and so nowadays, we can usually diagnose diseases like that with just genetic testing. There’s still times when we have to do a muscle biopsy, but but genetic testing is often sufficient, except in those cases I mentioned where it’s inconclusive, and the patients end up going on a prolonged diagnostic odyssey. But on the treatment side, it’s been tough because there really weren’t any FDA approved treatments for many decades. And everything started to change in 2016 when the first FDA approved treatment came through, and now there are seven counting the ones that were just approved last year. And the outcome of these patients is still not what we’d like because they still have shortened life expectancies. They end up usually losing ambulation when they’re adolescents. And they become increasingly weak and become increasingly dependent on others to help with activities and taking care of themselves. And so it’s hard to watch when I see patients like that over time in clinic, and to see at every visit that they’re a little bit weaker. And one thing that’s been very encouraging about having new treatments available is that we’re slowing the progression. We haven’t quite reversed it yet. But at least we’re starting to move the needle and improve some of the outcomes. There’s a couple of other types of diseases that I could highlight. Another one is spinal muscular atrophy, which is not technically classified as a muscular dystrophy. But as a neuromuscular specialist, I see those patients too. And the most severe form of this disease was typically uniformly fatal by the age of two years, you lost motor neurons in your spinal cord due to a genetic issue and, and very rapidly with decline. One advance that helped before the new therapies came out is that more events, dilatory options became available, because it was respiratory problems that would ultimately be fatal. But it was still not great to see these babies that were really bright eyed, and you can tell that they knew everything about what was going on. And it was hard to see them on ventilators or central central authority systems. So that was where things were in the 2000s. And then, and then in 2016, coincidentally, the first FDA treatment was approved for spinal muscular atrophy as well. And that’s really been transformative, we see kids who would be on a ventilator by the age of two, and they would not be on a ventilator now. And then they’re often walking and really growing pretty normally. So there are now three treatments approved by the FDA for this disease. And I remember early in my career, we had very little to offer them. And it was always tough to see those patients now it’s, it’s really gratifying because we make the diagnosis. Now, it’s often made by newborn screening, because of all the new treatments available. So we get the get the infant’s in, often within the first couple of weeks of life, and then start offering them treatment options right away. So one thing that’s been really fun to see over a career spanning several decades is to just see how the treatment options have changed. And, and how, how outcomes can be so different. And then how are


Will Bachman  22:51

newborns screened for that disease? Is that like a genetic testing that happens at birth? Or were they Is it like a blood test or something? Yeah,


Peter Kang  23:02

it’s, it’s a blood spot test. And so the newborn screening programs and across the states in the United States, have had been around for several decades now. And every state has a slightly different panel of newborn screening tests. So if you’re in one state versus another, your baby might be screened for 13 versus 12 diseases. And there are some that most states offer and some that are less uniform. So it’s an interesting system. And the the original newborn screening tests were really focused on metabolic disorders, there’s, there’s a set of rare metabolic disorders that could be treated even back a few decades ago, if you eliminated certain certain nutrients from the baby’s diet, because there are issues with metabolizing certain nutrients. So so the rationale for newborn screening starting up is we can just change their diet and really changed their outcomes dramatically. So that’s been sort of the rationale that applies for starting newborn screening for a disease because there are 1000s of rare diseases that are known. And so we can’t screen for all of them right now. So which ones do you pick? And so traditionally, the newborn screening was based on metabolic assays, but that changed a little bit with spinal muscular atrophy because that is a genetically based test. There’s no easily detectable metabolic defect. So but these treatments were so impressive that people really saw the rationale for starting newborn screening for it and adapting the adopting new technologies to do the newborn screening.


Will Bachman  24:52

And are there diseases that have been cured now that we’re not just slowing the progression but it’s actually cured them.


Peter Kang  25:02

Well with some of those metabolic disorders, the the outcomes are really good with just changes in diet. And also there are new therapies being developed in general so that I’m not sure that it depends on how the word cure is applied. And that’s something that inpatient communities they talk about a lot. And I think, I think if cure is defined as bringing someone to the state of being a typical individual, that you’d meet on the street, and I think a lot of still don’t have cures in that sense, but to the extent that someone can lead a pretty fulfilling life, and potentially go to a mainstream school with some support, and sometimes go as far as college and have jobs, that’s, that’s oftentimes possible. So we’re seeing a lot of exciting developments. And, and, and yeah, the outcomes are very different for a lot of these kids. Now.


Will Bachman  26:09

You mentioned earlier, that lesson that you still remember from medical school about how that interaction that is routine for you, is a sort of, can be once in a lifetime for the patient. What other sorts of lessons have you learned in your career about in the clinic from dealing with pediatric patients and how to interact with pediatric patients of different ages?


Peter Kang  26:36

I think it’s over the years. I think over the years, I’ve learned more and more how to put myself in the patient’s shoes. And obviously, that’s, that’s an imperfect skill that I’m still working on. And I’m sure I’ll be working on it throughout my career. But I think I think that the one of the reasons why that piece of advice still resonates is that I still try to keep doing that more and more and trying to make sure I understand what their perspective is, and not only the child, but the parent as well. And so one thing that’s that’s I think, an interesting challenge, albeit a gratifying one and in pediatric medicine is, is that you are almost always dealing with multiple people. And I think on in adults, you you are also dealing with spouses and other family members. But in pediatrics, it’s almost always multiple people in the room. And so you’re navigating often a three or four way conversation. And sometimes the perspectives can differ. I think, one thing that I’ve learned over the years is that oftentimes, there’ll be a little bit of a different perspective right there in the exam room, sometimes it’ll be between the child and his or her parent or between the parents. And, and the last thing I want to do is to have a big blow up in the exam room, or to have or to, or to take sides and appear to be favoring one party because everybody’s perspective has validity. So. So what I’ve learned, one of the things I’ve learned to do over the years is, when clearly there’s a little difference of opinion, I feel the temperature going up in the room a little bit, I just say I’m hearing two different sides of the story. I’m going to document both sides of the medical record non medical record and and just say what perspective is what and, and let’s take care of it this way and, and pretty much my universal experiences that that lowers the temperature a bit and, and and then we can move on to other topics. So for


Will Bachman  29:02

a kid with muscular dystrophy, let’s say where there’s currently no known cure, and you know that they’re going to just kind of get weaker and weaker over time, even though you might be able to delay that. How do you communicate that to the parents and also to the kid? Like and, you know, how does that depend on their age? And you may I don’t know, maybe some parents don’t want the kid to know are you know, are you the one to tell them? You know, straight up, here’s, here’s the situation talk, talk to me about those conversations. So


Peter Kang  29:39

those are really tricky conversations. And also Yeah, this is something that comes up in almost every clinic is what information to relay what perspective to give because yeah, I think about every word that comes out of my mouth and think about on how it will be perceived. When we have cease discussions, I do sometimes encounter this extreme where parents don’t want their child to know the diagnosis at all. And on occasion, I’ve had parents who want their child to leave the room when we talk about things. And I, I respect the family’s wishes about things like that. But I also, when we are alone, I tell them, you know, I bet your child is looking up some things on the internet. So I think at some point, you should have a conversation with your child about this and be a little more candid. And so I never if they express, if they express a wish, like this, you know, I don’t, I don’t disrupt what their expected flow is by just telling the kids straight out. But, but I’ve seen enough to know that most kids know there’s something going on, there’s a reason why they’re going to so many doctors, and, and if they’re able to, they are certainly searching things on the internet. So. So I think in most cases, eventually the families start telling their children more about what’s going on, the more typical situation is that I can have a pretty frank conversation with a child in the room and talk about just about anything. And so that’s the more typical situation which, which is more comfortable in terms of how to discuss prognosis. I, I do as much as possible to dwell on the positives, because my perspective and what my experience has been is that any family can go online and look up the prognosis of, of a really serious genetic disorder, what they’re coming to me for is to get some hope and talk about how things can be better. So I generally don’t spontaneously bring up topics like life expectancy, during clinic visits, because for one thing, it’s a little unpredictable. And the other is that my is that I really hope that new therapies keep coming online for these patients. And so what’s the expected life expectancy now may not be true, and the child gets to that age, so, so for multiple reasons, I don’t really bring up life expectancy, I really do try to at least within realistic bounds, express what I think would be a pretty positive outcome. And also try to anticipate complications and things that could cause problems down the road. And that way, we can keep an eye on them and treat them as promptly as possible.


Will Bachman  32:51

How do kids react to learning the news about their diagnosis? I can’t, I’m having trouble, I wouldn’t be able to imagine how I might have reacted if I was, you know, six or seven or eight or 10. And got this news? And do you find that it’s like deep wisdom or they cry? Or they they sort of take it in like, maybe more mature than adults might or how to Kids React?


Peter Kang  33:19

Well, I think at an age at, at early in early childhood, when a child hears a term like Duchenne muscular dystrophy, all the implications are not always apparent to them. And so just the term alone isn’t scary. It’s, I think, when we bring up certain topics like wheelchairs, ventilators, then it becomes scary and, and I don’t, so I don’t bring up those types of topics right away for someone who probably won’t need those devices for five or 10 years. It’s something that I gradually bring into the conversation when I think that those possibilities are becoming more likely. And and I think, to the extent that the family is comfortable doing so, I find that it’s best to let them have some of those conversations at home with their, with their children. And I’m there to provide guidance and give them some hints about how to conduct those conversations and, and so. So I find that it’s a tricky balance and that, on the whole, what families are looking for are, what they can do, how they can improve the outcomes. What are the tools available today and what tools might be available in the future? One thing that I do spend time training residents and fellows one thing that I do try to tell them when I have the opportunity is that families typically appreciate it when you give them hope they don’t always appreciate If you tell them the worst case scenario right off the bat, and because I think you should warn them that there are risks of certain things happening. But I think one of the worst things is to slam the door on what’s expected in the future. And I’ve had experiences like that where families were previously given prognosis that were really grim, but ended up being not quite accurate. And, and I think it’s, yeah, it’s always best to be careful. Because going back to that advice from my medical school professor, they will remember certain conversations for the rest of their lives. And so and so I tried to wait my words carefully. It seems as


Will Bachman  35:50

a layperson, that there has been almost an inflection point over the past couple of years in terms of biotech with RNAi. And, and Maderna. And and other kinds of developments. What sort of potential therapies or developments Do you see on the horizon that you’re particularly excited about? That might that might be coming, you know, in the next five to 10 years.


Peter Kang  36:21

So I think there are an incredible array of technologies available that were not available. When I was a medical student, when I was a medical student. Most of the FDA approved products were a there for common diseases, which obviously are very worth while treating, but there weren’t a lot of options for rare diseases. And plus, most of the treatments were what we call small molecules, meaning that they’re chemical compounds that often attach the receptors and alter the way cells function in certain ways or ion channels. And there are many, many really good drugs that are in that category. And they’re actually still new ones being approved today, some of which are for genetic disorders. But So back when I was a medical student, these compounds are typically discovered and brought to market by large pharmaceutical companies that were typically multinational corporations. What’s really changed over the past couple of decades is the whole biotech sector. And a lot of what the biotech sector works on are some of these newer biological compounds. So in contrast to the small molecules, you have things that are little strands of RNA and DNA, you have gene therapies that are packaged in small viruses. And you have proteins that sometimes act as enzymes that you can inject into the body periodically to replace something that’s missing. And so there’s a whole array of different treatments that are available. And there’s a whole way of thinking about how to treat diseases, whether they’re inherited or not, that’s really changed dramatically in the past couple of decades. And also, the interaction between academia and the biotech industry has changed, it’s, it’s become much more collaborative. And, and there’s a better understanding that we are in overall working towards the same goals and that we, our efforts are enhanced if we work together. So. So it’s been a really nice transformation to see. And in the future. We just recently had in the United States, the first CRISPR gene editing therapy approved by the FDA, I think crispers. And Gene editing, in general, will be a huge field. It already it’s already exploded, and I think it’ll just keep growing. And there are multiple other approaches, there are stem cells, which I think we’ve only just scratched the surface of how to use stem cells in to treat human diseases. And then gene therapy has, has really matured a lot as a field, but there’s a whole lot more room for growth in gene therapy. So So for treating both rare diseases and common diseases, I think there’ll be a lot more solutions that are genetic or molecular, and that are very specific to certain targets. And I think this specificity will continue to grow. And also, also there’ll be ways to accelerate the pace of developing tailored treatments so that so that Yeah, I think personalized medicine will become much more of a reality in the years to come. So I’m really looking forward to to everything that’s that’s a But I anticipate in the next few decades,


Will Bachman  40:04

I want to turn to the section of the show where I asked you about, are there any professors or courses that you had at Harvard that continue to resonate with you in some way, either professionally or just outside interests.


Peter Kang  40:21

I’ve taken several really gratifying courses that I still remember today, there are two that I would say were my favorites. So I was a philosophy concentrator, which was sort of a circuitous path to medical school. And so one of these favorite courses was philosophy 168, which I think was the number at the time. So it was a course taught by John Rawls, who was a really famous philosopher from the 20th century, he, unfortunately, is now deceased, but but he taught a very popular course, based on his political philosophy book, which I actually didn’t take, I ended up taking this lesser known course that he only offered every few years on Kant’s ethical theory. And I’ve, you know, by that point, I was a junior, I’ve taken multiple philosophy courses, some of which involves Conte, and, and he’s a notoriously difficult philosopher to understand. And the thing I remember most was that, for that one semester, I felt like I understood Kant and, and I, everything seemed very clear when he explained it. And he spoke at lectures, and I did the readings and the notes from his classes, which I think I still have buried somewhere in a closet. And so everything seemed remarkably clear. And so I think what that what that taught me was how, if you take the right perspective, and put the right effort into it, some of the most complicated texts and problems can be clarified. And you can, you can see things from a different light. So that was one of my favorite courses. And then the other was expository writing 52. So I was one of those rare people who actually took a second expository writing course. And I think we all remember our freshman expository writing required course, I actually enjoyed that experience a lot. I think, x plus 52 is called writing about fact, and it was taught by Richard Marius, who was the director of the Writing Program at the time. Unfortunately, he also is deceased now so. So he, I went into the course thinking this is going to be a really good experience for me. I’m not sure I’m going to do well in it. But I think it’s really important for for my development. And it was, it was just an amazing course. He, he and others showed me how powerful writing could be how much words can matter, and how much words can influence how people behave. And so there was a textbook we used in the course that was about rhetoric. And, and so we learned how words could be used, obviously, for good and bad to influence, influence people. And my writing skills developed to a much higher level as a result of that course. And and I think I had more conversations with Richard Marius than I did with a typical college professor. And it was really nice to have that individual attention. And he, he was one of the first people in college at, at the instructor Professor level, to make me feel that my life experiences were interesting and that they were worth writing about. And so it’s it that course gave me a lot more confidence in my writing abilities. And given all the writing that I do right now as a professor, it’s I’ve definitely learned skills in that course that I use to this day. And so those are probably the two pivotal courses I took it’s in college.


Will Bachman  44:34

From that from Richard Marius and that ex boss course. What are some of the writing tips that have stuck with you? Are there are there one or two or a handful of have sort of lessons that you took from that that you you still refer to


Peter Kang  44:54

I think this is something the one one conversation I remember fairly clearly is when I was writing a reflection about, about one of my relatives in Korea, which is where I was born. And, and, and I think, because I wasn’t used to writing about either myself or family experiences, I think my writing was a little bit hesitant and maybe a little bit, almost technical, but, but he really encouraged me to try to bring the story to life. And, and I think what that taught me was a couple things. One is that that it’s okay to write about your family and, and that there’s a lot that can be gained by doing that. And also that. Also, that it’s important to bring words to life as much as possible. And that’s something that I still remember today. And sometimes when I’m writing something, I look at it and I say it’s this is really dry, it’s putting me to sleep. And so I do my best to liven it up. And so, and I’m sure that he gave me many other technical tips that were very useful. But that was the one conversation that I remember fairly vividly. When we met to talk about one of my, one of my writing pieces.


Will Bachman  46:27

And since you majored mentioned, philosophy, and majored in it, curious? Have you encountered ethical dilemmas in your career as a researcher and clinician and, you know, curious to hear about any of those? And, and, and how you resolve them? Did you refer to Kant, or use your common sense, or other sort of training that you had in college?


Peter Kang  46:56

So it’s what I’ve come to realize, looking in the rearview mirror is how highly theoretical, a lot of the philosophy courses were, that I took. So although I did take a fair bit of coursework on ethical philosophy, it’s it was, it wasn’t the easiest to adapt it to everyday situations, but but I think that studying these texts really helped me to think about the issues and, and try to achieve that clarity that that I experienced in that course. So I think searching for clarity, and at least drilling down to what the real issues are, is something that I still use to this day, because I, I try to, whenever there’s a complicated issue, I just tried to unpack it and figure out what’s really at the bottom of this, whether it’s whether it’s a conflict or a puzzle, what the underlying issue really is, and doing that search and going through that thought process has been helpful. And for ethical issues, they come up pretty much constantly on both global and more individual level at the individual level. I’m often counseling patients about whether to try a therapy that might be experimental or might be just approved by the FDA, what are the pluses and minuses of it? And what are the risks? And so those conversations I have, on a pretty regular basis, on a more global scale. I think the the resource allocation for Rare Disease Research is something that comes up a fair bit more globally. And it’s, it’s, it’s a thorny problem. Because there there are only so many resources. And if you look at things from more of what people would call a utilitarian perspective, we should be focusing all our most of our resources on common diseases. But one of the things that I do think about often is that to the extent that we can, we really should try not to let individuals with rare diseases be left behind. And so that’s something that on a more global level, I think about and and I think rare diseases are important. And when I do you encounter these patients, one of the things that’s, I think difficult for them. And beyond the fact that they’re diseases, often fairly serious is that they feel very isolated. It’s hard to find others that have the same condition and can understand what they’re going through. And, and so I think one of the things that I’ve experienced, meeting with families who have rare diseases is the social isolation. That’s so Often a complication of that. And so, so, so those are some of the issues that I that have come up and that I think about on a regular basis. I think the the studying that I did in philosophy has helped a lot. I think more so with regard to teaching the patterns of thinking and analysis, then the content at this point in my career, so it was definitely a very useful field for me to study.


Will Bachman  50:31

Peter, for listeners who want to follow up and learn more about your research, check out your, your lab, where would you point them online?


Peter Kang  50:42

So I have a, I have a profile at the University of Minnesota website, so it’s fairly easy to find me on on through a Google search in the Department of Neurology. And also, I’ve got the alumni email address. And I’d love to hear from any classmates or others. It is PB Kang that PB K Fantastic.


Will Bachman  51:09

We’ll include that in the show notes. Peter King, thank you so much for joining today.


Peter Kang  51:14

Oh, thank you. Well, this is a nice conversation.