Naji Gehchan: Welcome to SpreadLove in Organizations, the healthcare leadership podcast where we explore leadership with purpose.
This episode is in partnership with the Termeer Foundation, a nonprofit organization working to vibrantly connect and empower the world of healthcare innovators until every patient has a cure.
I am Naji your host, joined today by Fernando Vieira, a healthcare executive with over 20 years of dedication to advancing ALS research and treatment development at the ALS Therapy Development Institute (ALS TDI), an non-profit biotech company. Fernando has progressed through various leadership roles at ALS TDI, culminating in his current positions as Chief Executive Officer and Chief Scientific Officer. He leads a team of over 25 researchers, overseeing target discovery, drug discovery, biomarker development, and translational ALS research. Having lost his closest friend to ALS, Fernando is deeply committed to translating scientific discoveries into clinical applications that benefit people with ALS. Fernando is a recognized leader in ALS research, affirmed by his roles on the Research Committee of ALS ONE and the International Alliance of ALS/MND Associations Research Directors Forum. He holds multiple patents for novel therapeutic approaches and has contributed to publications in multiple high impact journals such as Nature Communications, Nature Genetics, and Science Translational Medicine. Fernando earned a degree in biological engineering from the University of Florida and his MD from Harvard Medical School. Outside of his professional life, He is a dedicated father to a high school-aged son in Newton. He actively participates in his son’s activities with a local Scouting America troop. In his free time, he enjoys running, hiking, and playing basketball.
Fernando, it’s great to have you on my show and seeing you today.
Fernando Vieira: Thank you, Naji. It’s great to be here and great to speak with you and your audience.
Naji Gehchan: I’d love first to hear more about your personal story and how it links with the important work you are doing today in your non-profit biotech.
Fernando Vieira: Yeah, it’s where to begin, trying to think. I guess I’ll start really young. Going back or thinking back to my childhood, I guess the first job I imagined ever having wasn’t really a job. I imagined being an inventor. I think I always wanted to find ways to solve problems for people that hadn’t yet been addressed yet. Then as I went through high school, I got really interested in biology. I really enjoyed my AP biology course loads and started to think, okay, well, maybe I’ll go into clinical medicine. I pivoted off of that idea of becoming an inventor and more problem-solving very practically in a clinical setting. I never really got off of that completely. When I went through undergrad, I chose to go into biological engineering instead of just a basic biology major because I liked the idea of solving problems still. Then I found myself drawn into laboratory settings and joined a vascular surgery lab at the University of Florida and really ended up loving that. Ultimately, I ended up in the space between undergraduate and medical school. I ended up engaged with the ALS Therapy Development Institute or at the time it was called the Foundation, which was actually founded by a Newton family when one of their family members at the age of 29 had been diagnosed with ALS. I was really drawn to this effort to marshal resources to find treatments for him, to solve problems for him and other people with ALS. So I joined this group and this group was, it was made of kind of a motley crew of people who were trying to solve problems for their family members or some patients themselves were working at this organization. And they had set up a lab and it was a really early stage program. And I thought, Oh, well, maybe I can be helpful here. And, um, and I was drawn to all of these folks and their, their resilience in the face of, of this tragic diagnosis, ALS, for people who don’t know, um, ALS is a neurodegenerative disease that results in the loss of motor neurons in your brain and in your spinal cord, and ultimately results in, in complete paralysis. Um, it’s gradual over time. And there are really no effective treatments for the vast majority of people with ALS today still. And so I was drawn to all of these people and their stories. And I became best friends with one of my colleagues. We became roommates in fact. Um, and he was there because it was in his family for some cases of ALS, it’s directly hereditary and his mother had the disease. When I met him, his grandmother had died of the disease and he didn’t know if he was a mutation carrier himself. And so I stayed involved, uh, with the organization all through, uh, my medical training. And then, uh, at the end of medical school, he was diagnosed with ALS himself. And I watched his progression. Um, it was incredibly rapid. The guy who used to kick my butt on the tennis court, um, nine months later he had passed away. And so, um, I couldn’t imagine, um, becoming a practicing neurologist without something to give a person like Sean, uh, my friend. And so, um, I threw myself full time into, uh, drug discovery and drug development here at our our nonprofit biotech, the ALS therapy development Institute. Um, and it’s been an incredible journey since. Well, thank you, Fernando, for sharing this. And yeah, it’s, uh, as you said, it’s a devastating disease that’s still up to today has no, has no effective therapy or cure. So I’m, I’m intrigued if you can tell us a little bit more about your work because you have patents, you have advancements. So I’d love to know more about what you do, uh, on a daily basis and how you’re advancing research for this disease. Yeah, I’m happy to. So we’re a unique organization. We are a nonprofit, um, but we’re a brick and mortar research lab. Uh, we’re located here in Watertown, Massachusetts, and we have a research team with, uh, three different groups. There is a cell biology team. There is an in vivo pharmacology team. And then we have a clinical team that runs a natural history study slash translational research program that collects data from people with ALS while also collecting samples to generate omics data. And so our research program is very well integrated where we’re, uh, leveraging that natural history study and those omics to, um, prioritize therapeutic targets. We also leverage the reagents, the cell samples that we can collect from those people for our cell biology program, where we build assay systems to validate therapeutic targets and to screen drugs. And then when we’re screening drugs and we find something that has some potential, we have a large, like robust in vivo pharmacology team that can do lead optimization and really validation in an in vivo setting. And so we’re this nonprofit discovery engine where if we discover and invent or help somebody else validate their therapeutic, we either, you know, file for IP ourselves and we kind of spin that forward into the for-profit space for others to pick up and move that into clinical development. And that’s the model. Um, we have, um, some, you know, projects that have moved forward in that way that we’re excited about, but we’re always churning because we understand ALS is really, really complex. There’s a reason we have this natural history study. ALS is not one disease, right? Like cancer as well. These are, uh, complex disorders that we call the same thing that can actually be quite different. And so we know it’s going to take multiple treatments to ultimately address every ALS patient’s needs. And so we’re going to keep at it in this sort of engine. This is great. So I’m really intrigued in this, in this model you just, uh, discussed, right? Like being a non-profit and then building IP and doing a for-profit company. Uh, it’s really fascinating model. Um, and I feel like it’s at the core of how it was founded and this is like one of the values you have. So can you speak a little bit more about why non-profit and, and your view about research in a non-profit based versus biotech, uh, that, you know, like we all know, uh, probably more, I would say than a non-profit biotech. So I’m really interested in your view about this and how you’re leading this. Uh, yeah, I, I think for a disease like ALS, right. Where, um, there’s a lot still unknown and you know that it’s going to be a long haul. There’s a lot of value in building really an infrastructure where you maintain institutional knowledge and you can build over time focused on a specific problem, like in this case, ALS. And so if you’re in many biotech settings, you often are inventing incredible technologies and you’re finding the best path to solving problems quickly. Right. And you’re not necessarily worried about a specific disease. You’re finding the, the, the lock that fits your key, I guess. Like, so we’re, we’re focused on ALS specifically. We’re never going to pivot off of that. And so we get to build over time and learn and, and, uh, remain focused. And I think that’s really it. It’s maintaining sort of the mission and that critical focus on the one disease and not pivoting because you may have a quicker path to maybe a lucrative exit, which I don’t have a problem with that. I don’t have a problem with, with, uh, solving problems and people earning dollars, but for a disease like ALS, I think, uh, our model, uh, makes a lot of sense. Yeah, it certainly does. And, and as you were sharing, I like how you framed it like this, this, this focus, it can provide you a focus on the disease. And especially with diseases like this, where it’s between, you know, immunology symptoms are different. Like we still don’t really know it’s a multi by your framing is correct, right? Like I’m, I’m an autoimmune now that I was in cancer before it’s all, we talk about one type of disease where actually it’s really kind of a spectrum of diseases we just consolidated, but to get to this cure, potentially it might be one patient at a time with different modalities. Yeah. I think we, we, we might have cures, but it’s unlikely we will have a cure, right. Uh, for a disease like ALS and these other conditions. So as you think through it, and you’ve been building research for now a couple of decades, uh, on this disease, what are, where are today some of the specific challenges in this field, uh, and within the nonprofit, uh, nonprofit towards your end? I think, um, in the ALS space, um, a really big challenge is as we start to understand that ALS is more than one condition and you’ll need more than one therapeutic, you start getting to patient subsets that are really quite small. Like you go from a disease that’s an orphan disease, that’s rare to a disease where you have maybe ultra rare. And the, the same challenges in sort of economics of developing, uh, therapeutic for a broad population apply for these ultra rare populations. So it’s, um, trying to find the most expeditious way and efficient way to get really profoundly effective treatments to these smaller populations while also keeping an eye on how those insights could apply to the broader ALS population and, um, um, navigating the, the ecosystem that we’re in to get the most solutions to the most people as effectively as possible. Um, that’s, that’s probably our biggest challenge, right? You might have a therapeutic program that will, that has potential to profoundly affect 20 people living with the disease today. You have a responsibility to develop that and help those people. Um, but you also have to keep the bigger picture in mind. So that’s hard. Um, specifically the nonprofit space, there are definitely, um, major advantages, um, that we, um, you’re not working in specific tranches of funding. You can go out and raise capital for, uh, projects, um, over time. And it gives you a chance to build, uh, knowledge and expertise and develop assets. Um, at the same time, um, the, uh, available funds are not, uh, they’re, they’re, they’re, uh, uh, the pot of, of resources available is smaller in the nonprofit space. So you really do have to always be grinding, um, to keep, uh, these research programs going. So as you think about the next 10 years, let’s say like the next decade, uh, what are you most excited about, uh, as you’re looking ahead really in medicine, in medicines and in the therapies and innovation that you’re seeing today? I was thinking about this recently because, you know, we’ve been at this for a while and I look, I remember back to when I came into the space two decades ago, that version of me would be so jealous of the opportunities we have now, right. Of the new insights that we have into this disease. Um, we might’ve been blissfully unaware, right. That, that the disease was as complex as it is, but, uh, it’s so much better illuminated. Now we were looking in a, in just, uh, a black box in a dark room. And now thanks to various omics technologies, uh, we can really, uh, begin to tease, um, different patient subsets and better therapeutic targets and really go higher upstream, which gives us an opportunity to maybe make a bigger impact. We have a proof of concept, right? So, um, uh, there are rare mutations in a gene called, uh, superoxide dismutase or SOD1, which are responsible for about 2% of all ALS cases. And recently there was an approval of an antisense oligonucleotide, an ASO, um, that suppresses expression of that. It’s called Tofersen by Biogen and Ionis. And that is making a big difference in those people with ALS. Um, and we’re learning from that, that, uh, earlier intervention seems to have a big impact. So I think we have this proof of concept with drug types that didn’t exist years ago and with, uh, better ability to elucidate good targets that we can really make a difference in people with ALS. So it’s just doing that hard work. It’s continuing to, to do the lift, to be able to address that for everybody. And I’m sure you get this question and you kind of like, but I have to ask it, right? Like as you’re looking into targets, obviously one of the biggest questions we constantly get, you know, in healthcare as healthcare leaders is, are you using AI? Right. So I don’t want to get into like just the AI, but I’m sure you have some, because you talked about omics, obviously this is kind of like your business model, uh, and finding not only targets, but specific modalities therapeutically to be able to hit them. I’m sure you have some cool case that you can bring here to kind of really talk use cases versus just generic AI. So I don’t want to put you on the spot, but I’m like, as you were speaking, I’m like, Oh, I’m sure you have some cool examples. There are so many different use cases for AI. Like AI means so many different things. And, and, um, there are some applications that are quite mature. So, um, I’ll, I’m going to veer, veer for a moment away from target discovery into, um, disease, um, symptom measurement. So in ALS, one of the challenges is the heterogeneity of how it presents and a person might have onset in their arm or their leg, or another person might have their voice affected first. And it’s very, very variable in how, um, it progresses, which makes it actually hard to measure if a drug is having a benefit in clinical trials. Um, that’s typically done using, um, you know, subjective surveys, uh, something called the ALS functional rating scale. And, and so one of the elements of our natural history study, uh, which we’ve been running since 2014 has been capturing digital data. So we use actigraphy or accelerometers on people’s wrists and ankles, and we captured digital voice samples. And, um, so back in 2018, 2019, we were working with Google to apply machine learning and artificial intelligence to extract that signal, to measure, um, symptom decline using these digital technologies. And I think, you know, that will provide ultimately, if we can get these into the clinic and clinical testing, more sensitivity to detect therapeutics that are working, maybe in, uh, subsets of responders and really understand the disease that way. So that’s like a very near term application of AI and machine learning. On the other hand, um, applying AI for target discovery, it’s, it’s really exciting to see sort of a big tech’s interest in applying these tools on dataset resources, like the ones that we’ve generated here at ALS TDI and our partners at answer ALS that we’ve kind of joined our large data sets together, um, to really mine them for the most promising targets. It’s early days. Um, sometimes you wonder if we have enough data yet to really parse these things through. Like one of my, I have this, um, experiment in mind, um, to test for the, uh, the effectiveness of the technologies. Don’t tell the tech, uh, don’t tell the model about the genes that we know are important in familial ALS and ask, does it find them? And if it does, then you feel confident in what else it finds. And that might help you, uh, have a little bit more certainty that you should start, um, to explore and prioritize what’s, what’s bubbling out of these AIs. And so we’re, um, we have a number of irons in the fire with partners. We’re not developing the models ourselves. We won’t reinvent those wheels. There are folks out there who are much better at that than we are, uh, but we find partners to help us out. These are great examples. Thank you for sharing those. And I love it because it’s like from target finding to actual clinical practice, as you’re saying, and potential new endpoints, you know, with digital biomarkers, uh, for therapies, uh, I’m going to give you now a word, uh, and I would love to get first things that come to your mind. The first one is leadership. Servant. Uh, I think, um, when you’re really, really young and actually this, I see this in, in my son’s scout troop, when you’re young, you think that, um, leadership positions are kind of an award or like a prize to attain, uh, similar to like winning a race. So you, you’re, I, it’s not like that. Um, uh, leadership roles are, are service roles and, um, you’re just in a different position and you have a different vantage point and you have different responsibilities in the organization, but, um, you are serving your team, uh, in the same way, uh, the, and, and the mission in the same way each one of them are serving the mission. And, and I think that, um, a lot of, you can demonstrate leadership many, many different ways, but, um, the first is be helpful to your team. What about rare diseases? Complex. Um, we’ve, it’s a little bit of a theme that we’ve talked about, but I think, um, when you get into rare diseases, you do start to think, oh, they’re, they’re one thing like, uh, ALS one disease. It’s not, it gets rare, becomes ultra rare, very, very quickly. Um, and each person’s experience with those diseases can vary a lot and you really need to, um, engage with your community, um, to learn about their lived experience and what you need to deliver for them. Tremere foundation. Uh, support. It’s, um, so I’ve, I’ve, I’ve had the honor of being a Tremere fellow. I actually, yesterday was my final day as a 2024, uh, in my active portion of the 2024 Tremere fellowship. Um, it’s a fantastic program that brings together, uh, um, their, the Tremere foundation, uh, has a Tremere fellowship program where they bring together a group every year of first time CEOs and founders. And it’s, it can be out of the for-profit space, but also nonprofit spaces as well. And you go through this incredible year of programming, um, where you’re really supported, um, by the foundation from these fantastic mentors who have really done so many of the things that we’re trying to do, maybe different disease spaces, but, uh, they’ve been impactful and you, you have a chance to really, uh, learn from them even more though, you become really close to your, uh, uh, the members of your cohort and being a CEO can feel lonely at times. Um, and having other folks, uh, to exchange ideas and, uh, talk about your challenges and solutions, um, is incredible. And, uh, I am grateful. Well, and congrats for graduating. I don’t know if you guys say it that way, but I know it’s a really impactful work this foundation is doing. So congrats for your recent graduation. Uh, the last one is spread love and organizations. Um, I, I think, um, so I, speaking of Tremere foundation, um, I was two, two days ago, uh, they were hosting the, um, celebrating the 2025 cohort. And there was a wonderful talk by, um, a pharma exec, a lot, a lot of different domains. His name was, uh, Rod Cotton. And he was speaking about leadership and he was talking about, um, humanity, like, like, um, meeting people where they are. And, um, I think that’s critical to being part of any organization, being part of something that’s like bigger than yourself is spreading love to the people around you and, and, um, and really basking when it’s reflected back to it’s, um, for the problems that we’re trying to address in the life sciences sector. Um, you, um, you want, they, they can be really challenging and, um, emotionally, um, taxing and having people around you who are warm and kind of sharing that back, uh, keeps you going. Any final word of wisdom, uh, Fernando, for healthcare leaders around the world? Um, think about the people that you’re trying to serve, um, and that same token, um, uh, meet them where they are, um, understand their needs. And sometimes, um, we, when you become sort of an expert in a domain, um, um, you think you have the answers, um, but, uh, those conversations can be really illuminating. Um, and that’s one of the other advantages of being part of a non-profit is we’re so connected to our community. So for those who don’t have that advantage, um, go and create that community. Oh, this is great final words. Think about the people you are trying to serve. Thank you for all that you’re bringing to, uh, the ALS community through your work for research and biotech and science. Uh, it’s been a real pleasure and honor to have you with me today, Fernando. Thanks again. Thank you, Najee. Thanks for listening to the show. More episodes in partnership with Termeer Foundation can be found on spreadloveio.com. Make sure to subscribe to Spread Love and Organizations or wherever you listen to your podcasts. Let’s inspire change together and make a positive impact in healthcare. One story at a time.
Naji Gehchan: Thanks for listening to the show! For more episodes, make sure to subscribe to Spreadloveio.com or wherever you listen to your podcasts. Let’s inspire change together and make a positive impact in healthcare, one story at a time.
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