Interviewee: Jane Larkindale (New Zealand & New College 1998) [hereafter ‘RES’]
Moderator: Jamie Byron Geller [hereafter ‘INT’]
Date of interview: 18 April 2025
INT: This is Jamie Byron Geller on behalf of the Rhodes Trust and I am here on Zoom with Jane Larkindale New Zealand and New College 1998 to record Jane's Rhodes Scholar oral history interview. Today's date is April 18th, 2025, and Jane's interview will help us to launch the first ever comprehensive Rhodes Scholar Oral History Project. So thank you so much Jane for joining us in this initiative, before we begin would you mind saying your full name for the recording please?
RES: Sure, Jane Larkindale.
INT: Wonderful, and Jane, do I have your permission to record audio and video of our conversation today?
INT: Wonderful, thank you so much. So we are having this conversation due to the magic of zoom but where are you joining from today?
RES: I am currently living in Tucson Arizona in the United States.
INT: Wonderful, and how long has Tucson been home?
RES: I have been here since 2002.
INT: Great, so I'd love as we move through our conversation to talk more about what brought you to Arizona and your time there, but first going all the way back to the beginning, where and when were you born?
RES: So I was born in Vienna, Austria in 1975, my father was a diplomat and was opening a diplomatic mission for New Zealand in Vienna at the time, so I am a New Zealander but I was not actually born in New Zealand.
INT: Okay, and how, did you spend much of your childhood in Vienna?
RES: No, I left when I was about six months old, so I do not remember anything about it whatsoever I was probably a little older than because I understand my first word was German, so it was probably more like one. I don't remember it, no, we moved frequently when I was a child so we left when I was a baby essentially.
INT: Okay and would you mind sharing a little bit about kind of the broad strokes of what that looked like where you lived growing up?
RES: Sure, so we, as I say we moved quite frequently. I was born in Vienna, then when I was about a year old we moved to Washington DC, and then when I was about four we moved back to New Zealand. That was the first time I lived in New Zealand so I started school in New Zealand but then very quickly moved to Western Samoa, which is a small Pacific island. My father was actually working for the islands of Tokelau which belonged to New Zealand. So there was a three day boat trip from where we actually lived to Tokelau so he was gone quite a bit during those years.
We were there for a couple of years then we moved to Beijing in China where I lived until I was 10 and then I finally went back to New Zealand and actually spent a more concerted time in New Zealand (in Wellington) until I was 14, when we moved to London. I did most of my high school years in London and went back to New Zealand to do my first degree, and then I stopped following my parents around at that point.
INT: Wonderful, and you know, I would love to know a little bit about you, you lived in all of these interesting places growing up, I’m curious if you wouldn’t mind sharing a little bit about your earliest educational experiences, and maybe thinking about the ways they might have differed in those different regions where you lived?
RES: Yeah, that's actually a really interesting question that has made me as a parent now really quite lackadaisical about my daughter’s education, in the sense that I went to some phenomenally good schools and equally some phenomenally bad schools, and you know what? You learn a lot from both of them. I started school in New Zealand at a very ordinary state school which was a perfectly good school but, then moving to Samoa, I was in the only English speaking school on the island. But we had classes of 50 kids, very variable teachers and they still actually picked you up by the ears and hit you with rulers if you misbehaved. That was definitely a formative experience, and not in a good way.
So I was there for a couple of years and it was certainly easier for me than my older sister who was further through the educational system. I think I can proudly say my greatest achievement educationally in that time was coming seventh in primer three English speaking. I still have a picture book I won as a prize that year for coming seventh in class.
But then when we moved to China, that was at a time in China where we weren't allowed to integrate in local society, so we went to an international school that was phenomenal and I went within a few years from a class of 50 kids to a class of seven kids, many of whom I still have some contact with now. It was a really completely different experience, the school was run by five countries, they took the best of the education systems from each of those five countries and that was an amazing school.
And then I went back to New Zealand, back to my good old state school in New Zealand where I didn't really learn much for a few years because I was so far ahead. Then I went to high school. New Zealand high school was great, it was probably the best years of my life and I learned quite a lot. But then when I moved to England, the English school system was very different from New Zealand system and they were well ahead of me in just about everything and I did a vast amount of cramming to catch up again.
So I did a lot of being behind, catching up, being ahead, wasting time. This meant a lot of self education, which I think was actually in the greater scheme of things. I really learned to learn from what's around me - good, bad and other - and to be curious about what's around me. Because you know what? Everywhere you go it's a different system and there are different things that are interesting.
INT: Yeah, wonderful and you know, you shared a little bit when we spoke last time about the way in which this experience of growing up you know, kind of all over the world helped to shape your global mindset, and I wonder if you wouldn’t mind expanding on that perhaps a little bit?
RES: Yeah, it's very hard to look at your own life and say what made you who you are, but I certainly was very aware from a young age that both the privilege I had as a relatively rich, white person. There's a lot of privilege in the fact we had access to education, we always had access to books, we always had food and clothes and you're very aware of that. And that really forms how you see the world. Then in comparison when we were living in China, it was pre Tiananmen, so China was opening up a bit and I was very aware of the fact that we had liberties that other people didn't. We could talk about things, we could explore ideas, we could go places the people around us couldn't necessarily go, and I was very aware of that freedom of thought and freedom to be.
So I think living in lots of countries , particularly because we generally did integrate into society as much as we could, just helped in understanding people and helped me see the world differently. Peoplehave different drivers, different ways of thinking, and that’s really important to me. Even as an adult every now and then you come across somebody who thinks very differently than you do, and particularly when it's about something you morally feel is absolutely right, your first instinct is to step back and go, “No that's just wrong.” But I think that open mindedness allows you to say, “Well why do they think like that? Why are they coming from a very different world than I am?”
An example of that was when I was about 18. I was travelling and I met a young South African woman, a white South African woman and she made some incredibly racist comments and my first reaction was, “I want nothing to do with this person, she's horrible”. But then you start continuing the conversation, you begin to understand where she's coming from, would I ever agree with her? Of course not. Does she agree with me? No. I would still say she was she was totally wrong but it is very interesting to try and understand why is it people think like that and how do you go about changing that if you do you think it's morally repugnant.
INT: And do you, did you have certain hobbies that might have been constants in your childhood as you as you navigated some of these transitions?
RES: So unlike people, with kids like my daughter here, I didn't have specific hobbies as outside activities because you know, there weren't the same opportunities in all the different countries I lived in. I certainly did things for fun. But I think the two constants in my life were books because I always read a lot - I’m still a huge reader. One thing my parents always insisted on wherever we were we had to have access to a library. Which sometimes took some finagling, I know my mother managed to get me access to the British Embassy library in China because there wasn't a public library. There' was a school library, and there were embassy libraries, and my mother made sure I had access to all of this.
So books were huge, particularly because we didn't really have any constant TV in any language we wanted, I’ve never watched TV really, or access to movies and things. And then the other thing I always had, and again my parents were quite liberal from a young age and I was allowed to walk to and from school and go places by myself, was the outdoors. I always had the freedom to go and explore the areas around us, less so in China where we lived behind walls with security guards and there wasn't much outdoors, but we still found ways even within the compound to be outdoors. Building forts and exploring, having adventures, imagining the world, and that certainly to me, that still is freedom Where I live now I can go run in the mountains every morning and I’m not giving that up for anything.
INT: And you know, curious if you had a sense growing up of the direction that you hoped or perhaps expected that your that your career might take and really interested about all this time outdoors and how that might have might have informed it?
RES: It played very significant parts of course, the funny thing is I don't think I really had a sense of what I wanted to do until I was in my teens. I always wanted adventure, I always wanted to travel, I wanted to be outdoors and I think what attracted me to science early on. Honestly, as a teenager, I wanted to be Jane Goodall.
I wanted to go and study animals and live in the wild, it didn't work out so well so well for me but that was a huge passion when I was growing up. I was very much into environmentalism, I really wanted to do that kind of science, but at the same time I was very attracted to physics mathematics and some of the things that I found very challenging, whereas I’ve always found biology fairly easy.
So through school I was always torn, but I wanted to do some kind of outdoor science and I wanted to contribute to environmentalism, but at the same time I was attracted to more of the hard sciences intellectually. And that was reflected in my degree as an undergraduate. I changed my change my major every year of my undergraduate degree, I never did quite decide what I wanted to study. I’m pretty sure I still don't know.
INT: What did your final, your first undergraduate degree end up being focused on?
RES: I ended up with a double major in physics and plant biotechnology with honours, which is a, so masters equivalent. The honours part was in plant biotechnology. But basically, by the time I finished my degree I had the major requirements for physics, biochemistry, botany and all but one paper of maths, so I had a very eclectic background.
INT: Wow and as you, you know, as you were going through university did your vision of what your future career might look like shift at all or were you still thinking of perhaps the, thinking with that environmentalism kind of lens?
RES: I was definitely trying to move in the direction of environmental science. That got more cemented as I went through. In my first year I really mostly did physics and maths and did a genetics class and a biology class along the side, and I morphed more and more to the biology side as I went through. And I did some ecology papers that I absolutely loved but they were actually my worst biology papers. I’m a little impatient - I like answers rather faster than you get them in ecology. But by the time I got to my honours project, I was looking for a project more in physiology.
I had an option of doing my research project on a very biochemical topic that would have been based out of the biochemistry department or the option of doing a more physiology project which I did through the botany department. That's the option that I took because I got to go to the beach and do fieldwork at least once a week. Probably not the best decision making ever but it was a good project, there was a lot of physiology, it was very environmentally based which was the other attraction. That project also really defined what I ended up going to Oxford to study as well. So yes, all driven because I wanted to go to the beach.
INT: And I’m curious, at what point during university you started thinking about the Rhodes Scholarship as a potential next step?
RES: I don't know that I ever did. The funny thing is, I knew I wanted to do a PhD, I knew I was going to apply for Scholarships, my father was a Commonwealth Scholar (he had gone to McGill in Canada), but I didn't really know what I was going to do next. So I just applied for a bunch of Scholarships. I went to the development office (in the days before the internet that was actually an office you went into) and picked up a pile of pamphlets and flipped through them. And so, I’ve heard of the Rhodes yeah, I’ll apply for that, I’ve heard of a Fulbright I’ll apply for that.
So I applied for a bunch of things, I did not do as much research as I should have because I was actually offered a Fulbright and then realised to go to The States you have to do this thing called a GRE as an entry exam, which I didn't know about, so I hadn't done. That is probably a good thing because I was going to choose the Rhodes anyway once I got both. But it wasn't really an active decision so much as I’m just going to try a bunch of things and see what sticks, because I did know I wanted to do a PhD but I wasn't entirely sure which direction I wanted to go in.
INT: And do you, you shared with me in our last conversation a little bit about that moment of learning that you were Rhodes Scholar and the phone call that followed, I was wondering if you would mind sharing that story?
RES: Sure, so in the New Zealand system we you go through local interviews then you go to an in person interview in Wellington, which was an interesting process. I met some really interesting people, spent a weekend together. We got to go to parliament, we got to do all kinds of cool things, but at the end there was a dinner and they announced who had got it. And I was very surprised I got it because when you're surrounded by a bunch of really, really brilliant people you never think you're one of them.
But then they said, “Okay those of you who have been selected I’ll take you through” this was at the Governor General's residence, so, “I’ll take you through my office and you can call your parents.” and at this point my parents were living in Russia and I said, “don't mind me I’ll call my parents later, it's one in the morning in Russia.” and of course the Governor General said, “I know your father, he’ll want to hear immediately, come through here we're going to call him now.”, “No I know my father he does not want to hear at one in the morning.” But nonetheless we called him at which point I got a very sleepy, “Hello, what's the emergency? You got a Rhodes Scholar? Good, talk to you in the morning.” Because no, they did not want to hear at that time in the morning, and my father immediately assumed there was an international crisis if he was getting a call.
INT: And so is this in your final year of university that you were applying?
RES: Yes, yes so I was doing my honours thesis and yeah, I don’t think I’d quite finished, it was before the end of the academic year.
INT: Cool, and I know you mentioned spending part of your high school years in London, had you spent time in Oxford previously?
RES: I had, I will be honest with you, through high school I had aspirations to go to Cambridge, I thought the natural science degree at Cambridge was what I wanted to do for a while. I had been to Oxford, I had friends who went there, so I’d visited, but I’d never really seriously thought about going to Oxford at that point aside from the fact it’s a beautiful town. I decided against even applying to Cambridge mainly for financial reasons, it was a lot cheaper to be a home student in New Zealand than an international student in England. And also because I wanted the broader degree, I didn't want to commit to any one branch of science which clearly I still haven't committed to - but I was not ready to make that decision at 18.
INT: And did you live in college?
RES: I did, I lived in college housing the three years I was in Oxford I lived in a rather lovely 16th Century mansion just off the main college in my first year and then there were some modern flats that belonged to the college that I shared with friends for the next two years.
INT: And what, so I know you'd mentioned in university there were a few different you know, science particularly that we're pulling your attention, I’m curious about what inspired you to ultimately study plant sciences at Oxford?
RES: So by this stage I really made the decision when I was an undergraduate when I was still doing physics and biology at the same time. I fell into some classes in the botany department, simply because I really wanted to do zoology but they were at the same time as the physics classes I wanted to do. So I only ever ended up doing one zoology class, but I fell into the botany department and had a really good professor who had just started a mixed discipline programme that at the time was called molecular and physiological plant biology, which was partly in botany and partly in biochemistry.
And it was really partly in genetics and I loved my genetics classes and I loved these botany classes, so that was really how I fell into plants. But it also fit with my environmentalism, I wasn't very happy with having to do dissections and things, I was sort of not sure how I felt about that. I’ve come around now, but plants made sense and of course I was very interested in environmentalism and it appealed to me to study how could we grow crops, how could we feed the world in a climate change world? And the background of what was already obvious to me, that climate change was a real thing, global warming was happening, how could we prevent it?
And absorption of carbon dioxide is obviously through plants, how could we continue to feed the world and keep agriculture going? To me these were very important questions, so that was really how I got into plant science and then when I was working mainly on drought tolerance during my honours project in New Zealand when I was looking at what I wanted to do in Oxford I realised there was a group that was working on environmental stresses and plants.
The leader of that group was somebody who had previously worked for somebody else whose work I really admired. I’d read all those papers and, oh and this guy, Marc, he's on a bunch of these too. So I already knew their research and so I wanted to work with Marc. It was an incredibly lucky choice because we were always known at Oxford as the “Smug Lab”. We were the best supervised, had the most fun and were the best lab in the department so it was a little serendipitous that I got to do the research I wanted and it was a fabulous lab to work in.
INT: That's great, was, so it sounds like the lab itself was an important part of your of your Oxford experience?
RES: Yes, I think for scientists at Oxford your lab and your research group is at least as important as your college and I obviously had friends both in college and in the department. But yeah, my years in the plant science department we were all very close, we had a lot of fun and spent a lot of time in the lab working and having fun both.
INT: Wonderful, and you know, curious about what role if any Rhodes House played in your time in Oxford?
RES: It was limited, I certainly went to a lot of the functions there. I went to a lot of the talks that were random really, really amazing speakers, some of whom I didn't know who they were until after I went to hear them speak. I was probably a lot less politically aware than that I became later in life but I did used to go to talks a lot, I’d go to events there, I knew some of the other Scholars. Mostly the Rhodes Scholars I knew either through college or my department were the ones I was closest to, but yeah, I certainly would go and it was a great place for just meeting people, talking about things outside of our discipline. We did some of that in college where we'd have graduate nights where somebody would talk about their research and we would learn about something completely random, but I think I got more of that through the Rhodes House interactions than necessarily through my college or my department.
INT: And did you have the occasion to travel in between terms or on breaks while a Rhodes Scholar?
RES: Not a huge amount. My parents were still living in Russia so there was at least one Christmas I went to Russia to visit them and brought along one of my Oxford friends, actually a New Zealand friend who also moved to Oxford. So I did that, and I went to a conference in the Netherlands and a few bits and bobs, certainly I was part of the walking club so I went all over England going hiking. And I was on the fencing team so we went all over the country fencing, but not so much international travel at that time and it was working walking and fencing a lot.
INT: Did the walking club, was it centred in Oxford or did they travel all over the kind of area?
RES: It was a university club but we did a lot of weekend trips, so we would take turns leading them and go up to Derbyshire or the Peak District or the Lake District or Cornwall and just get on the train or get a bus and go and spend the weekend. The trips were great fun.
INT: That’s very cool, and so you mentioned three years pursuing your PhD in Oxford, I’m curious what your next step was after that where your journey brought you?
RES: So I spent three and a little bit years doing my DPhil then I had a little bit of a transitory phase. I applied for a postdoc in the US and it took a little while for my visa to come through, so I had a little bit of time hanging around Oxford not doing a huge amount. A little bit of work in the lab here, a little bit of science writing there, but eventually did get the visa through and moved to the US. It was a very poorly researched move, I went to Rutgers as a postdoc to do molecular biology in a lab that was not set up to do molecular biology, it was not a good choice. But I was there for about six or eight months which was very interesting times because this was beginning of 2002, just after 9/11. And in New Jersey there was a big backlash against foreign students and people on J1 visas to the extent I couldn't get a driving licence and anybody who's been to New Jersey knows that if you can't drive in New Jersey you're very stuck.
So it was difficult times, I had a cousin who was at Princeton at the time so I could ride my bike down the bike path for a few hours and go visit her or I could get on the train and go to Manhattan and that was pretty much what I could do. So that, combined with the poor professional advancement, made me decide that I couldn't keep that up. At the same time the woman who was the world expert on heat stress in plants was advertising for a postdoc in Arizona. And I knew she was in Arizona and I knew I wanted to work with her but, I didn't think I could live in Arizona.
I gave up my prejudice and said, “I’m going to apply.” I applied, she invited me out for an interview and I spent a weekend in Tucson and said, “This is not at all what my prejudices said it would be, it's not flat, it's not sandy, it's kind of fascinating.” So I made the move and I came out to Arizona to work at the University of Arizona, which at the time their plant stress department was the best in the world. I was based in the biochemistry department, most of the experts were in plant science but worked between the two . So I post doc’d there for about five years which had its ups and downs but, Arizona has a way of getting its hooks into you.
INT: And I believe was it during this portion of your- I’m recalling our last conversation and I think you mentioned meeting someone who became quite important in your life and I imagine that was during this phase, during these earliest years in Arizona?
RES: Yes it was, I met my husband while I was still at the U of A. We both independently had decided to volunteer for search and rescue in the mountains in Arizona and that's how we met each other. And that, of course, was a hook for why I did not want to leave Arizona, he was based here and that was an important part of the decision making. At the same time, search rescue was also becoming a very important part of our lives. And I was realising I was getting more out of that, which was a volunteer thing, than I was out of my actual job doing research . That made me do some introspection as to what I wanted to do next and why it was I found that so much more satisfying than the research, which was obviously more intellectually challenging. I really found I liked being in a position to give back and helping people is a real driver to me so that really made me give some considerable thought to what was going to happen next.
INT: I'm really curious, so would love to talk about what happened next but to ask you a few more questions, it sounds as though the search and rescue experience was really instrumental in your life at that time and was this you know, search and rescue for individuals who had been hiking or skiing and had gotten hurt or injured or lost in that kind of situation?
RES: Exactly, so in the US the sheriff's department is responsible for search and rescue efforts, but of course they are not necessarily outdoors people. So there is a volunteer organisation called the Southern Arizona Rescue Association based here Tucson and we work under the sheriff's department to do search and rescue across Pima County. And we basically deal with any medical or non-medical emergency in the mountains around Tucson, really across the county but mostly around Tucson. I’ve now been a member for I think 22 years, so we've seen a lot of changes with cell phones becoming common and helicopter rescues and such like.
But when we came in and joined the organisation we all had to do the equivalent of an EMT qualification so we had some medical knowledge, we did a lot of training in mapwork and now it's all GPS. But in those days we still use paper maps rather more, and learned how to survive in the desert, and w rope rescue and all of those skills, which was fantastic fun. It's an amazing community. But it's all fundamentally about helping people. You get a text message on your cell phone that somebody's in trouble, and if you are available to help, you go. It's huge, it's fun.
INT: That's incredible and you mentioned 22 years, are you still involved in that work?
RES: I'm still a member, I’m not terribly active right now because of my working hours, the amount of work travel I do and having a 14 year old daughter who does competitive sports. So I’m not actually here much, so it's been a while since I’ve actually been on a rescue but I still keep my qualifications up with the hope that I will go back to when I have a little more time again.
INT: That's great and you mentioned that this experience of giving back through those kinds of efforts is what inspired you to you know, to think about perhaps a career transition or next step and so curious about how that informed what that next step was?
RES: Yeah, so I always think that the moment I started really thinking about it I was actually on a rescue with my team remember, he was a very blue collar worker and I said, “I’m thinking about making a change.” and he said, “What do you want to do?” and I said, “Change the world.” and he said, “That’s what's we're doing right now, we're changing the world one person at a time.” and it was a very profound statement that made me really think is, you don't have to change things on a global scale, sometimes helping a small number of people makes a difference.
So I had that thought in my mind, and at the same time I was looking for a job that was in Tucson because I didn't really want to move on. I was pretty sure I was done with academia, I loved academia, but I was in a lab where nobody continued on in academia, we never got around to publishing anything. I was in a bit of a rut and I saw an ad - I originally saw a piece of paper above the photocopier in the lab upstairs from us saying the Muscular Dystrophy Association was looking for a research coordinator. And I didn't think much of it, but then I was leafing through Nature in the common room and saw the ad for the same position and thought, oh maybe this thing is real and it's here, it's in Tucson. I think I want to find out more about it, and I knew a little bit about some neuromuscular diseases.
A friend of my mother's had died of ALS, and a woman in my lab had previously worked on a condition called Friedreich's ataxia which people don't generally know much about. So I knew something about some of these conditions and I thought, you know, it would be really cool to be involved in research looking towards treatments, cures, and other ways that you can help people with these conditions. I was very interested in the medical side of search and rescue and thought, I’m going to find out more about this job.
So I applied, I interviewed, and nothing much happened for a very long time (I later found out that this is because the head of legal didn't want a foreigner and to have to deal with visas). Eventually I did get the job. The original job was really just processing grants, but MDA was an interesting place and my boss at the time was really trying to get some new ideas going. One idea that she had at the time seemed like a bit of a hairbrained idea, as it was a very new concept at the time. That is, that as a nonprofit we should be investing in early stage companies to get companies up and running that would develop drugs for rare diseases -at the time most nonprofits just funded academic projects.
And I like to explore ideas, so I started playing around with how this would work, how we could make it operational and how we could make this happen. And a year later we launched it, we got it going, we had some initial seed funding from MDA and we got a venture philanthropy programme going. That is, we had funding to invest in companies and projects to move them forward, and then if they were successful there would be funding coming back to the fund to fund the next work It was awesome, I got to meet with some incredibly smart advisors, talked to everyone, talked to all the companies in the space, got to know the science, got to talk about the science with the smartest people in the world, and we developed a pretty robust review process and funding mechanism, and then worked with the companies we funded to help provide expertise to help them succeed. We developed that programme over the course of a few years. While I was there I think we reviewed well over 50 different potential drugs for the conditions we were interested in.
We funded about 20 of them, and some of those are now drugs on the market. Somewhere in that time period my boss left, and I took over her job and started really overseeing all the research programmes, which gave me a view of research all the way from academia through to drugs on the market. And I got a chance to really seeing how that development process worked, what were the problems, and looked at every programme in excruciating detail. And it was a fascinating time because that was when the first drugs for some of these conditions were going through the FDA, getting approved, we were seeing success, it was really interesting times.
INT: Wow, that's really beautiful and so what years was this, when you were at The Muscular Dystrophy Association?
RES: 2007 to 2014. I was already at C-Path in 2016 when the first Duchenne drug went through the FDA and got approved, although I had been somewhat involved in that program in earlier phases.
INT: And I believe you shared in our last conversation that it was after the experience of working at the Muscular Dystrophy Association that you were inspired to start your own consulting company, I was wondering if you would mind speaking about that?
RES: Yeah, maybe inspired is not quite the quite the right word but I left MDA because there was a global recession and fundraising had been very bad, so they cut all funding for the research programmes. Being head of a research programme with no funding is not a lot of fun and you can't make much difference, so I decided that was the time for me to move on. I actually left without having lined up another job, which at that stage of my life was a bit of a scary move, but I formed a consulting company of me, myself and I. I reached out to all the companies I’d been working with and all the nonprofits I’d collaborated with and basically said, “I’m available, what can I help you with?” and I got to do some really interesting work with some of the companies and did a lot of different things. I got an opportunity to write some regulatory documents and grant applications and added insight into some research programmes, and was involved in program teams for a few different therapies.
I also wrote a lot of strategic development strategic plans and development projects for nonprofits at the same. It was good timing because this is when my daughter was young. so that kind of work gave me some flexibility, I was working from home and that was nice while she was little. However, within weeks of starting my consulting company I got contacted by one of the nonprofits I’d always worked with (the Friedreich’s Ataxia Research Alliance - who are fabulous) and they asked if I would work with them. So, they took up 50% of my time right from the start - I still sit on their science advisory board. I do as much work with them as I can because they are a very effective nonprofit group.
Soon after, another project came up. I had been trying to fund this project when I was at MDA and they came back to me and said, “Will you lead this?” and (a little more reluctantly) I said, “Yes I will.” I wasn't sure if it was a project I could succeed at and I will say I came very close to failing on that one, but it's been a success in the long run – it is still going now. But it was a hard road to get to the point where it is now.
INT: Would you mind sharing with the what the focus of that project was?
RES: Yeah, so there's an organisation here in Tucson that’s called The Critical Path Institute. It was designed to deliver on FDA's Critical Path Initiative, to really accelerate drug development. So what C-Path does is it works through public private partnerships of regulators, companies, clinicians and scientists to develop tools to accelerate drug development and share those tools with the community. I launched a consortium on Duchenne muscular dystrophy to really bring all the companies together to share data, use that data to develop biomarkers, disease progression models, and to really understand endpoints. As I say it came very close to being a failure, as getting people to share data is a very difficult thing to do, but we got there in the end and it's still going. I’m now a member, I’m one of the people who are supposed to share data as opposed to the person doing the work and leading it.
But it took a long time to change people's mindset to understand that you can share certain amounts of information, and we can all learn from each other, and that by sharing information and tools we can all be more efficient. It was difficult to get there but I think it's been valuable in the long run, and it was certainly educational to me in learning how people work, how companies think, how to build consensus and how you can get around the fact that people don't actually want to show you their data.
INT: Yeah, and I imagine too it's really interesting to think about the different intersections that you've seen in your work. I imagine in terms of you know, working with both scientists and patients and drug developers and patients and I was wondering if you would mind sharing a little bit about that and perhaps you know, what it is that you find most motivating in this kind of work?
RES: Most motivating is easy because those are the families, the communities, the people living with these conditions. Whenever I’m having a bad day I just have to call one of my favourite advocacy groups or one of my favourite people living with one of these conditions and they'll remind me immediately why what I do is important because these communities become your friends, that’s as simple as that. I was talking to a mother of a boy with Duchenne just last week and she said, “I don't know why you do what you do - I have no choice, I’m in this community because I have a son with DMD - why do you do it? Why are you here?” and I looked at her I said, “I’ve got no choice either, it might not be my kid, but your kid is my kid as well.” and a lot of us feel that way.
When I was at MDA we had a close group and we're all still in neuromuscular, we've gone through industry, we've gone through the nonprofits, we've gone through advocacy groups but none of us have really left neuromuscular diseases because those are the people you're working for, that's what you're doing it for, and we are not done yet.
In terms of working with all the other stakeholders, there was a meeting I went to and this is years ago when I was at MDA and they sat us down in tables. The academics sat at one table the companies sat at another, the regulators and the patients had their own tables. They asked us to all write down on a big piece of paper what we thought each of the other groups contributed to the drug development process. And it was hilarious because nobody knew what anybody else did, and it really felt like every group was saying “I do everything you guys don't do anything.” It was one of those real moments of realization: You all do have value. That's what's driving you. That’s how I can work with you.
We went through a number of these exercises, what's driving you, why do you do what you do, what is it you're trying to achieve? And it was probably the most interesting meeting I’ve ever been at, not only because some of the people in there who were very different from me but just understanding how everyone works together in the ecosystem. So I do it to this day, I look at my company that I work for and say, “That's an irrational trial design, why are we doing that?” So oh, I think back through the last four years I’ve been here we did this because of this and because of that we did this other and that's why we are where we are and understanding what's driving each of those people and stakeholders.
Families want treatments and cures tomorrow, companies want profits, regulators don't want to be blamed because something is unsafe down the road – they want to keep people safe and they want effective drugs. But there are different drivers all the way through – for example, some people are worrying about what they're going to tell the Board next week. Others are worried about the safety of a drug that's going to be on the market for the next 50 years. Still others may be specifically worrying about what happens to their kid if they don’t get a treatment. Those are very different drivers.
INT: Wow thank you for sharing that, that really just illuminates for me the challenge of getting everyone to the same table in the way that you described in terms of just creating that collaboration among all the different parties involved.
RES: It’s a challenge. We just need to be able to say “Look, I know you're competing on this, I know you're driven by this and you're driven by that but you're all going to benefit by this in the middle.” and this in the middle for my consortium was, we all need data and none of us have enough, this is a very rare disease. If we all put as much as we can on the table, you can ask your questions and I can ask my questions. And the one thing we really all were interested in was understanding how the disease progressed without treatment. And we had a very good modelling group and we modelled it. Is it the best model out there? It's the best one that exists so far, but there will be better, the more data we have the better they'll get.
INT: That's lovely, would you mind, you've had such an accomplished career Jane I’m wondering if you would mind sharing a little bit about just the progressions or advances that you've seen in the industry in the years that you've been there?
RES: Yeah, enormous changes neuromuscular diseases are all rare diseases. When I joined MDA I think there was riluzole which does a small amount for ALS, and corticosteroids that we used off label for Duchenne. Myozyme for Pompe disease had recently been approved, and maybe the first drugs for myasthenia gravis. Basically, there was nothing for any of these conditions. Since then there have been a lot. In SMA there are now three very effective treatments approved in the US. Duchenne has eight.
We're seeing progress in some of the others, and there are so many more clinical trials. The clinical trials we were supporting at the beginning of my time at MDA were pretty much shots in the dark as, “Somebody was on this and it looked like they got better, let's try it.” So now we're doing genetically based medicines, pretty much everything we do is either a gene therapy or an exon skipping drug or an oligonucleotide which gets to the root cause of disease. There are still things are bit further down the pathways that are still incredibly valuable, but that concept of precision medicine has progressed from a random idea that everyone laughs at to commonplace.
INT: Wow, and has the idea of data sharing among developers or scientists become more status quo?
RES: I wouldn't go as far as status quo, I think there's still a lot of selling that needs to be done to get people to share, and it depends on the data, people are much more willing to share their placebo or natural history data than they are their drug arm data. And nobody wants to put toxicology data out there because frankly nobody wants anyone to know about that, so it depends on the data. But I think the recognition that some of these big data sharing projects can be of value to the community are coming around, when I started the Duchene Regulatory Science Consortium it took me about two and a half years before I really got anyone to share any data, which you can imagine were a painful two and a half years.
Then I turned around and I had been working in Friedreich’s the whole time and within a year we had a bigger database in Friedreich’s than we did in Duchenne. It went so quickly because it was a community that was already used to sharing. From there, based on that and a conversation with FDA that I had, somehow I decided that we should try and do this across neuromuscular diseases and learn from related conditions. FDA never think small, so they turned around and said, “We're going to give you some money, but you need to do it across all rare diseases.” That was probably a step too far and while we did launch the database and it's still going, it certainly doesn't cover all the rare diseases yet. Incrementally it is getting more data in more conditions as we go along, but I don’t think it's going any faster in terms of data sharing than when we started. And the community, the people living with these rare diseases are all for it, they think we should learn everything we can from them because they know that's going to make the difference in the long run.
INT: Wow and when Jane did you join the team at PepGen?
RES: I joined in April of 2021 just toward, towards the end of the pandemic, it was interesting times at C-Path, we'd had some leadership changes and some things I don't need to need to go into rubbed me up the wrong way. The CEO of PepGen was somebody I’d worked with when I was at MDA and I kept in touch with him. He called me up one day and said, “Do you have time to consult?” and I said, “I don't really have my consulting company anymore, I work for C Path full time but what do you need help with?” and he started telling me about a company that he was looking at investing in, he was at one of the venture firms at the time, and he wanted my advice on a Duchenne drug.
And we talked about it several time, and he said, “Will you consult with me on this drug?” and I told him that I would not consult, but if he had a job available I would be interested, because the technology looked amazing, and I thought it had a lot of potential. I was the third or fourth US employee of PepGen at the time. The technology actually came out of Oxford and there still a team at Oxford at the time so I spent more time talking to Oxford than I had for years.
We were a virtual company early on, we eventually got premises, and now we have offices and labs in Boston. I am now the only remote employee in a considerably larger company than it once was.
INT: Wow and what is the, is it a particular disease you mentioned that PepGen is focused on particularly?
RES: What we have is a platform technology, it's a peptide linked oligonucleotide platform. So when I joined the company we had two major programmes in Duchenne muscular dystrophy and myotonic dystrophy they were both nonclinical at the time. They're both in clinical trials now. So at the time we were beginning toxicology studies and now we're in phase two trials for both programmes. But the platform delivers oligonucleotides pretty much everywhere but to muscle a lot, so the obvious application in the first instance was neuromuscular diseases and that was a big part of the attraction.
INT: Wonderful and so it sounds Jane like you're doing such important work that I imagine keeps you very busy, but I wondered if you would mind, you shared a little bit about some of the things that fill your time outside of work, I know you mentioned running in the hills of Arizona and you mentioned a little bit about your family and your daughter. But I was wondering if you would mind expanding on some of those things that fill your time outside of your professional work?
RES: Sure, I think there's time outside of my job, I’m not entirely sure some days! Obviously the most important thing is my family, and I would say the most important thing outside of my family is my work. My husband and I have a 14 year old daughter. She's finishing up middle school now, so we obviously we do a lot of things as a family, she's got very into competitive soccer so we spend a lot of time on the competitive travel soccer scene which is a new one for me. I’m not a team sport person myself, but she loves it and her team is great so that's been a lot of fun seeing that side of the world.
We are also as a family very much still into the outdoors, we do a lot of hiking and mountain biking and exploring and orienteering and things. So those are all things that we do as a family and spend a lot of time in the outdoors camping, hiking, backpacking anything we can find time to do. We had a team meeting earlier this week and the question for the team was, “What's your biggest vice?” I had to say, “Running away into the mountains where there's no cell phone contact and none of you can contact me.”
INT: It sounds as though Arizona has really, like you said, gotten its hooks in you in terms of it sounds like a wonderful place to support that kind of outdoor lifestyle?
RES: Yeah, we're really lucky where we live and Tucson's a big sprawl of an American city as so many of them are, but we live in the foothills of the Catalina mountains so within half a mile walk from my house I’ve got hundreds of miles of trails up into the mountains. Down at the bottom it's obviously desert cactus, as you go up you get into oak and then at the top of the mountains you get into pine forest. They say it's like going from Mexico to Canada in a few miles, it's probably 15 miles straight line up the mountain but there are wonderful opportunities for hiking, for climbing, camping it's gorgeous, the one thing it lacks is of course the ocean or other large bodies of water.
INT: Wow that is beautiful and I would love to ask you Jane as we move into kind of the final chapter of our conversation, I would love to ask a few questions related to the Rhodes Scholarship, so the first being what impact would you say that the Rhodes Scholarship had on your life?
RES: Huge, in many of the ways I probably don't even recognise. I didn't know what I wanted to do at the end of my undergraduate degree, so it gave me an opportunity to go back to England, it gave me an opportunity to expand my horizons. I met some amazing people there who opened my eyes to opportunities I would have never even thought about before. It was a very much a formative experience, probably those years are for everyone in terms of just where you go from there personally and where you go from there professionally.
It was a really good period of life. That's where I started running and riding long distances and thought, maybe I could get into endurance sports. I met people who challenged me to think in different ways. I got much more politically involved thanks to my German friend who I shared a house with. It just made you just think in a different way. Oxford's kind of amazing that way it's not just about what you're officially studying but I went to concerts I’ve never gone to if I hadn't been at Oxford. I went to lectures and topics I would have never considered going to but hey, you guys are going I’ll go along with that.
INT: Great and you know, we're at a really exciting moment in the life of the Rhodes Scholarship, so we are coming up on the 125th anniversary of the Scholarships in a few years which is a wonderful opportunity to reflect on the history of the Scholarships which is one of our hopes for this oral history project. But it also is a great opportunity to think about the next chapter of the Rhodes Scholarships and I would be really curious to know what your hopes for the future of the Rhodes Scholarship might be?
RES: Yeah, that's a really interesting question. You think of the history of the Rhodes and going from some nasty, misogynistic, racist man and what he wanted- I think his phrase was, “To make the world English” to where we are now, whether it's a supporting some of the more innovative, brilliant thinkers in the world and where will it go next? I would like to see it offer opportunities to more people, more diverse people, people from different backgrounds. I’m still involved with the selection process in New Zealand, and I think in some ways we are still inadvertently biassed towards people like myself who have privilege, who had the opportunity to be exposed to more things.
I always think of my friend who went to Oxford at the same time as me. She was on a Commonwealth Scholarship not at Rhodes and she'd never been out of the South Island in New Zealand. She was not likely to get a Rhodes because she couldn't talk about politics, she couldn't talk about world events, or economics, because they'd never really touched her world. Was she smarter than me? 100% smarter than me. I am sure she now knows more about some of those things than I do. I’d love to see more people, particularly people from poorer backgrounds who haven't had those formative experiences get those experiences. Because I’d travelled, I’d seen the world, did I get a lot out of it? Of course I got a lot out of it, but when you see people like my friend who had her eyes opened in a whole different way and opportunities presented in a whole different way, they're the people who can really change the world who otherwise might not. I try and keep this in mind as a part of the interview process.
INT: And we would love to know if you have any words of wisdom or advice that you would offer to today's Rhodes Scholars or perhaps the Rhodes Scholars of the future?
RES: I think I'd probably give them the same advice I have given in a couple of talks to high school high school girls in science here, which is, “Don't be limited by your imagination.” Most of us aren't going to have one job or one career or one way of giving back to the world, you can give in so many ways and learn in so many ways. There are careers in the future that don't even exist now. When my daughter says she doesn't know what she's going to be when she grows up, I say, “Good, because whatever you’re going to be in the future probably doesn't even exist now.”
So just be open to opportunity, I think I really like that I’m a kind of a shallow thinker sometimes when it comes to planning. I never planned a career, I never planned what I wanted to do, I just followed interesting ideas all the way through. Even now I don't know what I do in my company - I don't have a job description, no one knows what I do, but I follow interesting ideas in all directions. I see a hole and I fill it. And I think particularly for Rhodes Scholars who are likely to be really brilliant people coming through with innovative ideas, use those ideas, don't be intimidated.
See what works, you’re going to fail some of the time, we all fail. I certainly have failed miserably along the way, but if those people can follow their innovative ideas and follow where curiosity takes them and where their drive takes them, they can do great things in the world. Because again, they're selected because they're leaders, they're selected because they're innovators, they're selected because they're caring people who care about the world. They're the people who are going to change the world – hopefully in positive ways.
INT: Beautiful, well gee, it has been a joy talking with you and I’m so grateful for your partnership in launching this project and would love to invite if there is anything else that you would like to share before we close?
RES: No I think that's everything I’d like to share. I think this is a great project and yeah, I imagine you're hearing some really interesting stories.
INT: Well thank you for offering yours to be a part of that.
RES: I'm not sure how interesting mine is but definitely love other people’s stories.
INT: Well I will end our recording there.
