Holly Teichholtz on Storytelling, Science, and Marketing the Fight Against Parkinson’s

Hello and welcome to the Civil Productions purpose podcast. I'm your host, Rupert McConic, founder and EP at Civil Productions. I'm delighted today to have Holly Tysholz, Chief Marketing Officer of the Michael J. Fox Foundation. Welcome Holly, how you doing? Good, how you doing, Rupert? Thanks so much for having me. Lovely to catch up. So just jumping in, Holly, just turn this a little bit about you, your background, and sort of what led you to the path you're on now and where you studied, where you learned everything, all that good stuff, all the fun stuff. Oh yeah, for sure. Well, first of all, I love this story because none of it makes any sense, like the best kinds of stories never do. So I have spent my entire career in science, communications and marketing in one way or another. I've been at the Fox Foundation for 20 years now. I just had my 20th anniversary over the summer. Before that, I was doing similar jobs at MIT, Children's Hospital in Boston, the Rockefeller University here in New York, just called a university, but of course it's actually a biomedical research institute. And I of course, as only makes sense, was a music major. So like just as you would expect, I grew up studying music. I was always a writer. So the things that I, you know, that you kind of start to understand the things you're good at as you, you know, your kid and you're growing up, the things I always understood and was told that I was good at were music and writing. But I was not ever particularly very good at math in school or science. That wasn't really what drove me. But so I went to music school. I studied vocal performance. So I'm a classically trained singer, opera and art song. And as I was finishing up with that part of my education, my undergraduate education, I really honestly, Rupert, I didn't know what I wanted to do with my life. I just, I hadn't really thought beyond the college part of things. And so it happened that I stumbled into my first job was at Children's Hospital in Boston. And I started there as they they had their own in house temp pool. And they put me in the development and public affairs office. And these were concepts I had like never heard of, but came to be very interested in learning more about especially the communication side of things. I had had no idea how sort of the sausage gets made in PR. I saw my colleagues working with reporters telling stories from the front lines of research at that phenomenal facility. And the rest is kind of history. I just I decided to keep doing that for a while. I was good at it because writing was the core skill. And I always thought I can always go back to grad school for music if I decide to do that. Or I can, you know, kind of choose later if I want to keep pursuing music. But I found my way in science communications and just the science is so fascinating. And it's so motivating to do this work that you feel like you're doing something that is actually helping people and families. You know, we're all touched by disease and you're thinking about the ways that what you're doing is helping to advance better treatments and cures. And it just never stopped holding my imagination. And there's always more to learn. So that is how I found myself going down this career path and found myself at the Fox Foundation. Like I said, about 20 years ago and just have never looked back. Wonderful. So what's music taught you about science and technology? What a great question. Only a creative person like yourself, Rupert would ask me that question. So first of all, I love talking about this because there's not an hour and, you know, that goes by that I regret my arts training in my sort of non-arts career. It's so funny how we get these ideas, right? We get these ideas that if you want to be good at business, study business, if you want to be good at communication study communications, it's like things are so connected in ways that we don't think about sort of on the surface. And so for me, I am so grateful for my arts training all the time. You know, I can sort of op off the bullets on this list, you know, the way that I think of them. You know, one thing is performance training never doesn't help for almost anything you might choose to do in life, right? So one of the things that you learn when you're being trained as a performer is you learn coping skills because you're up on a stage and things do not always go well. But what you don't do is stop, what you don't do is ask somebody, you know, hey, what would you do if you were me? You just you kind of have to just as one of my voice teachers used to say, "Cope, if you stopped, I mean she was not having it." It was like, "Cope, cope." The piano is still playing. You keep going, "What are you going to do? How are you going to solve it?" So it's like you start to just get that real time, you start to flex that muscle for real time problem solving, real time coping skills. Obviously that comes in handy if you're giving a presentation at a board meeting or what have you, but I think it just also gets you aware of the resources, the internal resources that you have regardless for problem solving in real time. So I think that's helpful stress, grace, under pressure. I think as a writer it certainly was so valuable to me to study the song repertoire, the opera repertoire, so much of which is grounded in canonical literature. So you learn about writing, you learn about language. As an American singer, you have to be proficient in singing and at least the four big languages. So English, Italian, French, and German, and usually a lot of other languages too. So you hone your language skills and certainly if you have an ear for music, you will have an ear for accents, but you know that'll help. But having an ear turns out, as I'm sure you have thought about yourself probably at times, your ear is instrumental in writing, right? So much of writing and I don't even just mean speech writing when you're reading something out loud that somebody else is going to have to deliver verbally, but so much of what we find beautiful in written language has to do with how it sounds to our ear. So training my ear certainly supported me as a writer. And then finally I think just studying the arts and especially something like vocal music. But really, Rupert taught me to look for the hidden connections between things, the things that aren't so obvious. When you sing, you sing songs set by different composers or even sometimes operas set by different composers with the same texts. And this is true, especially you can kind of get this tonal sense, you know, idea of what I mean if you think about the sacred literature, right? Think about every composer who has set a requiem or a mass, right? That's always the same words. But you know, they are so different, these pieces of music. They're so different in the different hands of these composers. And it took me a while to realize in fact, I mean, I wasn't, you know, I wasn't raised with religion. I didn't think about the mass. And it took me a while to realize like, hey, this, this is like the same Agnes Day, you know, in this foray that I sang in that Agnes Day by Vivaldi. Like so it's like, oh, I think this is like the same text. But they're so different in feeling they make the, you know, the reactions that you have the response that you will have to that music. And it just really caused me to think about how interpretable the world is, how very different the same sets of circumstances can appear to different people. And I have found that to be both an empathy builder and something that has helped me when I've been thinking about how to communicate, especially challenging or technical topics. There really isn't a one-size-fits-all and a lot of things are connected in ways that you might not expect them to be. So I am very grateful for my arts training all the time. And but music can be considered a science as well, right? It's kind of like, it's got a hybrid situation going on. Oh my gosh. Yes. I mean, you know, we hear a lot about how the sort of the neural circuits involved in being good at music, you know, have a lot to do with the neural circuits being involved and being good at math or even science. And we see this time and again. And the truth about studying the arts is that one thinks of it as a really delightful fun pursuit of something creative. But the truth is every art is built on a grid. Music is highly quantitative. Of course, I mean, the Western system of harmony as invented by J.S. Bach, right? You really have to understand. Voice leading, you have to understand four part. Voice leading, you have to understand how the different functions of the harmonic scale work to create the Western music repertoire. You know, this is extremely quantitative. It's all based on math. And I think the same is true when you think about how does one become Picasso, not by like flinging art at a canvas. He of course was like the most beautiful representative painter in the world before he started inventing Cubism. So. You know, it turns out that like the study of the arts really gives you this sense also of the sort of the quantitative grid-based underpinnings of things and a sense of how those underpinnings can be manipulated to creatively so that something new comes into the world, but it's really not about just inventing a new set of rules every time. Also a very helpful set of principles for how you might go through your non-arts career. Wonderful. So what is there on love about the Michael J. Fox Foundation? Well, this is going to be the longest podcast episode ever. So I mean, first of all, it's obviously worked here for so long. I mean, I don't remember what it's like to work anywhere else anymore to be honest. I've just been here for so long, but when I came here in 2005, the Fox Foundation was five years in, I've had been founded, started by Michael in the year 2000, which in turn was about nine years after he had been diagnosed with Parkinson's disease at the age of 29, which is extremely young and not very common to be diagnosed at such a young age. And before he came here, the favorite place that I had worked, I'd worked as I mentioned that a few places. And, you know, I thought of my favorite place that I had worked up to that point was MIT. And the reason that it was MIT was that I was surrounded by really smart, ambitious, very creative people, mostly scientists, but who were on a mission really to achieve something very challenging. When I worked at MIT, it was I was working in the life sciences with scientists working on all these different diseases and different forms, elements of sort of basic biology, but all motivated by this obviously pretty fundamental part of what science exists to do, which is to add to the knowledge base that we have as literally as human beings. And so I just found that to be, you know, really motivating, really fascinating. And I myself was not someone who had ever felt motivated or particularly talented to do the science, but I did feel very motivated and that I had some capacity to talk about the science to help other people see both big and, you know, the big picture and sometimes the little pictures about what these researchers were doing, what they were trying to achieve and how that would play out in all of our lives. And so when I got to the Fox Foundation, I was still in that place where, you know, I was happy to be here, but I thought of MIT as like the my favorite place I had worked. And I don't think it took long before I started saying, you know, I think the Fox Foundation is now my favorite place that I've ever worked. We work very hard. We work very lean. We always have. We're actually quite large now. And yet we're, you know, I would make the case that we're still lean for sort of our output and productivity. So when I got here, there were about 20 employees of the Fox Foundation. We had funded around 35, 40 million in research, which by the way is the metric that we use to describe what we've done. We don't talk about the money we've raised. We talk about the money that we've deployed and the research that that has enabled those are our metrics that we care about. And today we're on the verge of where somewhere around 350 employees. We've funded about 2.5 billion dollars in research so far. We're in the midst of a five year fundraising campaign to fund another 2.5 billion in the next five years. So to fund the same amount in the next five years as we were able to fund in the first 25 years of the Fox Foundation. And some things that just really set the foundation apart for me, even as I first joined, I had been at MIT. I had been at Rockefeller. I was very accustomed to how we talk about bench science, which tends to be when you're hearing these stories. If you start paying attention to how science reporting works, you'll hear a story about a breakthrough or some kind of, you know, whether it's maybe it's incremental, maybe it's a bigger breakthrough in a disease space and you'll hear, you'll often hear researchers talking when asked like what's the sort of practical implication for people living with disease or for all of us. And that answer will often sound something like, oh, you know, 10 years down the line. This is going to, this is going to really matter, right? We're going to really have treatments out of this in 10 years. Sometimes that's accurate often. It's a lot more than 10 years that these things take to, you know, sort of go from this bench research to something actually practical on a pharmacy shelf that can help somebody. When I got to the, so I was very accustomed to that and I was comfortable with that mode of scientific communication. When I got to the Fox Foundation, it took me a little while to get used to a very different message, which remains our message to this day because it remains what we do to this day, which is to say that we really have a very specific sweet spot for where we want our funding to go. And while basic research is the backbone of all therapeutic development, we do fund a good deal of Parkinson's specific basic research. You know, what we are here to do is to ramp up the machinery around the translation of those basic findings into practical, you know, treatments that people can feel in their everyday lives. So that's a part of the research and development pipeline that tends to be referred to as translational and clinical research. And that has remained our strong focus to this day, although we have had to, you know, do a lot of basic biology work as well, just because the biology of Parkinson's is so complex, we have had to make investments in that part of the R&D pipeline as well. So I think coming here, being surrounded once again by very smart, very ambitious, very goal-oriented people who were willing to look at the way that, you know, sort of the, you know, the ways that we think about science getting done and getting talked about and saying that's not really good enough. We have people living with a disease. As Michael has said, time is not a neutral concept for someone living with a chronic progressive disease, bringing in this tremendous urgency to the strategy and saying what can we do differently so that our dollars are complimentary and that they're accelerating the pace of R&D. And that was just fascinating to me. That was, that was something so different and so worthy and noble. And I was so proud to be associated with building an organization and a brand that was setting itself apart, you know, in that particular way. And so it has just never, it's never stopped being like that the whole time. There's too much to do. We all do about one and a half to two full-time jobs, I would say, on on our marketing and comms teams. But we're passionate about what we do. We're supportive of each other. And we love knowing that we're here for a community of people who are counting on us to drive results. And that's what we, that's what we just love to come to do, to work to do every day. So what's the goal to end Parkinson's in the next five years or something? Or what's, what's the else about? It's definitely safe to say that we will not end Parkinson's in five years. We wish that we would with that said, the, the scientific opportunity that exists now is tremendous. We are in a sweet spot. We had a really important breakthrough two years ago out of our, we have a big long-term human study of Parkinson's that we launched in 2010 that is delving into the again the very complex biology of Parkinson's and two years ago we validated so-called biomarker. It just means we now have a way to detect the earliest stage known biology of Parkinson's in people who are living. And we can do that even before someone has a single symptom. This has never been possible before. We've never been able to confirm that earliest biology and it has to do with a protein that misfolds and clumps in our brain similar to, you know, what people are more familiar with in Alzheimer's when they think about beta amyloid. We have a similar version of that in Parkinson's. And what used to be the case really right up until this breakthrough is that you couldn't even confirm the presence of that biology until after death. You could only do that at autopsy. And so now we have a way to detect that in people and know that they are going to start to experience symptoms at some point. They're going to have a Parkinson's diagnosis. Why does that matter? Because now we can be much more precise in how we test different potential therapeutic agents, you know, that are trying to change that biology for the purpose of preventing or stopping Parkinson's disease from biology from setting on or progressing. We can put people in clinical studies with much greater confidence that whatever therapy that we're testing is actually trying to act on the biology that they have, which is harder than you might think without these sort of biomarkers and ways to objectively test and see what's happening in someone's cells. And it's giving us the opportunity as we make these kinds of inroads in understanding the biology to understand the different sort of biological profiles of different people living with the disease, which is pretty similar. You know, some people will have this particular misfolded protein that I'm talking about, some small percentage won't. Some people have a genetic mutation of one form or another. Some people don't. So we're really collecting a lot more tools in our toolbox, to characterize people's individual biology and then put them into clinical studies that are testing agents specific to those parts of their biology. So this is broadly, this is what we think of as so-called precision medicine or personalized medicine, which we've seen come so far, for example, in cancer. You know, it now seems that Parkinson's has been set on a trajectory toward precision medicine also, which is just like a tremendous opportunity. And so in order to make that to keep accelerating us towards on that path, we have a lot of work to do. We have a lot of work to do to further characterize the biology we've already discovered and to find other molecular profiles that we can exploit in the same way. We have worked to do to optimize the biomarker that we already discovered. There are so for example, right now in order to use this test, it's in spinal fluid. We want that to be in blood, right? We want you to just be able to get a blood test and be told if you have, if you have some kind of risk for Parkinson's disease, we can't do that yet. We need to keep investing in therapeutic development. So again, these agents that are working to, you know, working to exploit these different kinds of biology. We make large investments in driving forward these targets. There's just tremendous, tremendous opportunity. And that's what the purpose of our fundraising campaign is to accelerate these tools and these agents as far as we can in five years, so that we stay on a path to successful, faster clinical studies of some of these potential precision medicine approaches to better treating the disease. Right. And who gets it? You know, great question. The men, women, is it an age? It's a roughly equally distributed between men and women. There may be a slight bias toward men getting it a little more than women, not huge there. It affects, you know, people of every ethnic background, typically speaking the age of onset, the average age of onset is around 65. But we see and hear stories of many people being diagnosed younger and in some cases like Michaels much younger. So we think of anything age, roughly age 40 or below. We call that young onset Parkinson's. And so by and large, you know, this is not a disease where you have a genetic mutation and then therefore you get Parkinson's disease. It's sort of not like that sort of smoking gun genetically. There are genetic mutations that increase risk and especially in certain populations, those mutations can increase your risk more. So for example, I'm an Ashkenazi Jew. I don't have Parkinson's associated genetic mutations, but you know, if I did, that would increase my risk relatively more Ashkenazi Jews or relatively more likely to get Parkinson's with these genetic mutations in other populations. You know, when we are looking for audience, right, when we are, you know, running our campaigns to grow our audience, we have some campaigns that are specific to looking for like those specific populations like people with a genetic mutation or Ashkenazi Jews in some cases, depending on the scientific goal. We of course also invest in becoming more adept at the cultural competencies required to increase underrepresented populations in clinical research. The reason being, of course, from a scientific perspective, in order to achieve the kind of acceleration that we need to in R&D, we need our study populations to mirror the actual affected population of people with Parkinson's as closely as possible. If we don't study everybody living with Parkinson's, then it's possible we're missing out on a specific risk factor that may exist in a certain population or even a protective factor, right? Like, that's another goal of research is to figure out why don't some people who are exposed to the same kinds of, for example, environmental triggers. Some people will be exposed to a known environmental trigger for Parkinson's and get the disease, some people won't. And it's a very interesting but also a very urgent scientific question to understand, is there something protecting the person who doesn't go on to get the disease? We've got to uncover that too because perhaps that could be exploited to help many people. So we do a lot of work to find as broad a population of people living with Parkinson's as we can to take part in our mission, which involves both as a foundation, a philanthropic foundation. We need people to do a lot of different things to advance our mission. We need people to give us money. We are in the business of raising money because research is annoyingly expensive, but also a lot of non-financial calls to action. We need people to participate in research and often they are not aware of the urgent need for them to participate in research. We also want them to take actions as far as policy and advocacy. For example, we know that these environmental triggers are out there and some of them are still sanctioned by like EPA and we would really like them to be deregulated by EPA because we know that they're putting all of us at risk. So we have a lot, you know, so we're trying to reach as broad a population as we possibly can and engage them in our mission because their participation is really the absolute enabler for everything that we do. Brilliant. So how do you reach those people? How do you market to all these these niche groups of people that are not necessarily thinking that they could get Parkinson's? Because there's a kind of perception that it's an older white man's disease, right? The perception. Oh my god. Yeah. Sorry. Your question will just have me rocking in the fetal position under my desk for a minute here. Yeah. So we do all the things. We really have, we really have like a very comprehensive suite of marketing and communication strategies and tactics that we are throwing at this problem. And so as I arrived at the Fox Foundation, it really was sort of, when I think back on it now, you know, it really was sort of pre-digital marketing era, right? Like at that time and certainly for a nonprofit digital marketing largely meant email, you know, social didn't meaningfully exist. You know, brands wouldn't find their way into social for, you know, several years to come. Nobody was figuring out, no brands were figuring out how to use social very well in those first early years, even when all of us as like sort of individual people were flocking onto, you know, Facebook and so on. And so when I first started, it was very much, you know, a case of publications, earned media, you know, we didn't work with a PR agency, but we were fortunate to have, you know, Michael's name, you know, to be our name. And so it was still relatively early on. The foundation was rather novel. And we did a lot of work through, you know, PR to help tell the foundations story. As digital marketing, you know, pun intended sort of came online and has continued to evolve, first installed like an actual marketing function at the Fox Foundation. So rather than the communications team kind of doing marketing off the side of their desk, we first, you know, chunked off marketing as its own discrete function in 2014. And we a former colleague of mine came in to head our, you know, to kind of build out our early early marketing function. And so what that began to entail was, importantly was, you know, our first forays into audience development work and paid media to go alongside our earned media and the development of our presence. Of course, we had a website, you know, the whole time, but to develop our digital footprint through the evolution of our website and sort of digital homes on the internet, as well as a big part of what I was always involved with, which was brand building through content creation. And so I give my, my boss, who has been here the whole time. She has been my boss the entire time. Debbie Brooks, the CEO and co-founder of the Fox Foundation, has always had a very strong vision and belief in the power of great content. And I'm so grateful for that because to me that is such a critical part of brand building. It also just happens to be the kind of thing I love to do. And I've never had to fight somebody who's kind of saying to me, "What's the ROI on that new guide that you want to write?" We think of content. And so by content I mean publications, we do educational guides, very in-depth educational guides on different aspects of living with Parkinson's and Parkinson's research. We have podcasts. We do webinars. We do it all as far as creating what we think of as quite sophisticated content and really appealing, beautiful. We hope explainers in video form, interviews with members of our community storytelling. So we make a tremendous amount of content and we think of that as the cost of entry to build credibility with our audience, honestly. And of course to your point, Rupert, it's like this is different. This is not exactly, this is not monolithically developed, right? So we think about developing different kinds of educational guides depending on whether you are a patient, depending on whether you might be a caregiver. Are you a member of an underrepresented population? How might we partner with a group that has cultural competency to develop materials that feel authentic and that will speak to you in a different way, which is nothing that we ever take for granted that is somehow simple to achieve. We take that very seriously. And so we do a lot of brand building through content today. What I would say is the pillars of what we do, we have paid indirect marketing. We have our presence in social. We have earned media and we have our broad digital footprint just trying, it's really interesting for us to try to reach people in the sense that we don't provide patient services. We're not a hospital. We don't connect people to their organizations where a big part of the mission is like to connect people to services or to support groups. That's not really what we do. We sponsor studies that require people to join. We are behind a lot of the big policy and advocacy work happening in the Parkinson's space. And of course we're funding, you know, tremendous amounts of research. But we need to connect with people and help them understand how our programs fit into their Parkinson's journey because it's not like, you know, again, it's not like a hospital where you get treatment. It's not like your doctor that you want to support that person's lab. And so we have to help people understand the value that we bring to the Parkinson's space and why it's so critical for them to be part of it. So we do that in all the ways. I always say we'd go home a lot earlier every night if we made less content and did fewer of these things. But it's absolutely mission critical that we continue to find our Parkinson's audience and persuade them to take part in these critical calls to action. Brilliant. So in an industry that's constantly evolving, what keeps you hungry to learn and push creative boundaries? I think just the kind of the things that we've been talking about, you know, I love knowing that what I do and what my team does here really matters. It's close to the centers of people's lives who are living with, you know, a really devastating disease. I'm extremely motivated to know that my work, the work of my colleagues to make sure that my team is aware that their work is truly meaningful. It's about something bigger than ourselves. Beyond that, you know, I love, you know, I love when we can surprise people, you know, I mean, it's like I think we're kind of, we're a foundation, we're a nonprofit. We're one of the, you know, we're a big one and people know us. They know our name because they know Michael's name. But still, you know, you're a nonprofit. People kind of shrink you in their minds, right? They kind of think they know, oh, you're a foundation. You know, you're here to ask me for money. Well, yes, actually sometimes that is true, but we're here to do a lot more than that too. And I really love, I love surprising people. I love when people first join my team and they see, I mean, not that we're not we're still working on, we're evolving constantly and trying to try aiming for continuous improvement. But they're surprised by the sophistication of our marketing technology stock. They're surprised by our capabilities in uniting, you know, data analytics and insights driven strategy. We love surprising people. We love, it's a very serious mission needless to say. So we try to be really to, you know, be be quite sober about what we're doing here. And yet we love to have a brand personality that sort of acknowledges the full, the full humanity of what we do. And partly that comes from Michael, who of course is incredibly serious about this mission and is able to be that and also be like one of the, you know, just funniest people you'll ever meet in your life, maintain his incredible sense of humor and his sort of rye approach to things. Partly comes from that. And I think it just partly comes from our belief that Parkinson's is a part of somebody's life. It doesn't define them, you know, that it's a person living with Parkinson's and it's still a whole person. So I think we try to, you know, surprise people with things that are funny or things that are that sort of shake up, maybe the way that they might expect us to be thinking about what we're doing. Again, all hopefully through the lens of a lot of sensitivity, you know, we do not make light of Parkinson's disease in people's lives. So I think all of that just keeps me wanting to keep, you know, I love when my team finds a new way to do something, an unexpected way to do something, something disruptive. I think that's that too. It's very honorable, you know, I mean, it's like something I say sometimes to my team is like, and I mean, they know it and they don't, they get it. They think we all believe this, but it's like boring isn't better. You know, sometimes when you're working on a call like something like this, it feels like it's got to be very serious. It must be that like I should write this in a very dry and important sounding way and it's like, no, you're going to lose everybody after like the first two senses with this, you know, boring isn't better. So, you know, so I think all of those, all of those things just, you know, making sure that we're seeing our audience as the, you know, with the full humanity that they've always had and that they'll always have Parkinson's or not and making sure that our brand voices is expressing what we're trying to do and ways that speak to, to all those different aspects of a person. That really keeps me going. Brilliant. So, in closing, Holly, it's been a pleasure having you on the podcast. You've been very informative. Lots of fun. And it was great hearing about all the wonderful things you're up to. Thanks, Rupert. Well, it was so fun to yap away and you know, this is obviously my favorite topic having been doing this. Like I said, for so long, I can't remember working anywhere else, but thanks for having us and thanks for letting us talk about what we're doing to your super pool audience. Brilliant. Thank you so much for joining us for this episode of "The All Productions" purpose podcast. Learn more about the "The All Productions" and our work in the purpose and sponsored entertainment space at www.theDocsOfTheAllProductions.com.