Building The Noise with Matt Hay: EPISODE 007

And around that time she had a little boy behind her that was, you know, maybe eight years old. And he stepped next to her and she put her hand on his head and looked back at me and said, I'm ha. She said, I'm so glad you exist. And I thought, he here I was like trying to be because I wasn't ready for this. But that was a huge, huge moment for me to recognize like this is not all about me. Welcome to the Building the Noise Podcast. Welcome to the Building the Noise Podcast. My name is Matt Teresco, and with me today is Matt Hay, an industry patient advocate. Matt, thank you for joining us. And ultimately, as we think about your career and the work that you're doing in patient advocacy, why did you get into patient advocacy to begin with? This was certainly well, thank you for allowing me to be here. Before I even answer that question, you and I can pretend, like when we first scheduled this, we knew that today was going to be National NF2 Awareness Day. So, which is the rare disease I have that I'm sure we'll be talking about more. Yeah. Um, you know, and when I was diagnosed with NF2 in college, uh I got a little bit involved with some patient advocacy groups and certainly did not realize at the time how lucky I was to be diagnosed with a disease that impacts one in 40,000 people and have dedicated patient advocacy groups to that rare disease. I know now that that does not happen very often. Um I got a little bit involved, but I was young and probably still very naive and in denial about my disease. I started going to events and thought, I'm I'm not ready for this. I'm not ready to see how much worse things could get for me. And so I'm now proud to admit that I gave up on engaging with advocacy groups for about a decade while I went through my own, you know, maybe 20 different surgeries and uh dealt with a lot. I got through all of that and thought I learned a lot. I made a lot of mistakes, I um did a few things right, and I felt this uh sense of obligation, and it almost made me feel like that that what I'd been through was worth it if I could go share that experience with somebody else. Um, and it yeah, that makes me sound like a a better person than I am, maybe, because it was also there was also a little bit of feels to me like some of this was worth it if um I learned something and I can do something with that information. So it just gave me a sense of purpose that for a long time I had no idea what I was supposed to be doing. So that's kind of a long answer, but that's that put me on a path. It's amazing to hear though, because you know, let's call it what it is. We both were dumb and naive in our 20s and thought we were invincible. Um, you know, my story having broken my neck and embarked on an 18-year opiate run of thinking I knew everything or didn't want to face what was right in front of me with constant days of pain. Um and there there are good there are good days through that, and you don't really even, I guess, recognize at times what the good days were, what the bad days were, but perhaps you can go back to your 20-year-old self again and knowing what you know now, and maybe this this is the decision or this helps shape the decision that you did. What would you have told that 20-year-old boy ultimately that you know to know that at that point that you know now? Oh, I think um having in the short term, having the attitude of my none of that's gonna happen to me, or maybe that's what what my doctor, who is one of the foremost experts in the world in this disease, doesn't know what he's talking about. Um, I would probably say, yeah, that's probably not true. They probably what they are saying is uh you know, pay attention to that and get through that denial stage as quickly as possible because all of the things that I was told could happen that I was convinced wouldn't, um, it was foreshadowing and they all did. So I think being able to accept the expertise around me. Yeah. So well, you you that's one side of it. This might sound like opposite advice, but these things go hand in hand. He knew about my disease state, and he knew the physical symptoms that were going to happen to me. Yeah. But I think a big mistake I made was allowing what had been accepted of a rare disease based on a textbook or a white paper. Those are based on, you know, on a bell curve, like 80% of uh a population. There are people that do way worse than that, and there are people that can do better. I was very, very fortunate to have successful surgeries, and um it was a relatively mild case. I mean, I'm deaf and have facial paralysis and I have all kinds of issues, and it's still relatively mild case. Um I wish I had not let what other people said this is what you're probably going to be able to do physically, emotionally, academically, uh, professionally. I would tell my 20-year-old self, don't get caught up in letting other people define uh what they think you're capable of doing. Sure. Um and I yeah, I think it delayed me a decade in at least trying to do more. Sure. Because and I and I eventually worked through that because I could be kind of obstinate. Um, but I didn't try to do more. You know, when people say, I can't believe you can walk again, you don't think I should run a marathon because everybody's saying you're lucky to be walking. Yeah. Um, so I would say to people, you know, don't let the opinions of others limit what you might be able to do on your own. Yeah, no, that it's it's so true because people, as you said, people will even apply that bell curve to the to their own mindset of what's possible, right? And um everyone thinks that they are the edge case, um, and that no one else will be the edge case. Um, so to be happy with what you have. And you know, there have you have to have a bit of that bullheadedness to uh just take on life in the first place, um, and say, let's do this. But um I think that leaves I leaves a lot of it would leave a lot for people to wonder if they if I didn't know, for example, that you just finished your doctorate. And with that, that's right. Yeah, you're your MBA as well, if I'm not mistaken, though you're an IU grad and it pains me to say those words, but go ahead. Yeah, you know, we I was about 40 when um I lost, I got laid off. Uh, you know, just something you're having a rare disease doesn't mean you're immune to all the other like curveballs life can throw that at you. And I think if people have worked in a corporate environment long enough, sometimes companies get up put up for put up for sale. And yeah, even though you know it's not a reflection necessarily on your work, there's times where, man, it really is hard to not think, did I not, was I not good enough? Did I not um and ahead of that I thought I have this rare disease, I have some physical limitations, I'm I here now with an implant. And I went and got my MBA as an insurance policy because I thought I can't control some of those physical things, so what can I do to proactively offset some of the challenges so that if I'm less marketable for an employer in some way, what can I do to be more marketable? So I um that was my rationale for my MBA. The work that I do now in advocacy, you know, it took a decade for that to pay off, but I think it helped qualify me um for the work that I do now. But then I sat, uh, you know, you and I both we share this that sometimes we find ourselves in rooms with some incredibly bright and informed and educated people that are making big decisions in healthcare. Yep. And as I started finding myself in a room and thinking how lucky I am to be here. Um, but occasionally I was the only one that wasn't a doctor. And that was almost motivation for me of if I have the good fortune to be in this room and to be the voice of patients or a patient advocacy group sometimes, uh I owe it to them to make sure I have done absolutely everything I can to be sure I'm qualified to not just sit in the room and listen, but to participate. And I thought a doctorate would be a great way uh um for me to have that confidence. Uh, there's also a level of respect that comes with that, and nobody nobody ever made me feel uh like I needed that to earn the seat, but I felt like that. And I thought exactly personally, I have lived this professionally, I've worked in this environment, but academically I felt like it was a shortcoming. So I chose to go back and get my doctorate in public health. Uh in a in a doctorate in public health as an implementation component rather than just research that really appealed to me. Because I thought I'm in a position where I can help enact change. So, what degree can prepare me for that? Um, so yeah, that's all very new and um super exciting. And if it ever gets um old, having somebody refer to me as doctor, you can reach through the school and punch me because it's it's it's been pretty fun and exciting. And um, yeah, it's a fun conversation to have with your mom. You know, like I did it. Yeah, my my parents were both school teachers for over 30 years, and to be able to say, you know, for all the other million reasons why it's probably a good thing being able to tell my mom. Oh that was pretty special. That's fantastic. Uh, you know, but you're also an author. You're also an author, too, right? So help the audience, you know. We have a lot of patience, we have a lot of industry uh respondents or you know, listeners to this show. And I I think it's valuable for folks to recognize that sometimes you know, you don't have to go through it to advocate, but sometimes if you have gone through it, it really helps you to be an advocate. Um talk a little bit about your book before we dive into the the advocacy side of things. Well, I start by saying you're I appreciate how you're painting me in such this in this light of like, hey, I'm out there doing big things. You're but you are you're very thoughtfully touching on some of the some some of like this was the best thing I did this decade that I was most proud of. So uh I appreciate that. But I also hope anybody listening and turn, you know, everything that I'm doing is in an effort to be a better advocate and to be a better supporter of and and the great thing about working in advocacy is when you start to hone skills and like how to work across teams and how to be more compassionate. Oh, yeah, those are those translate a lot into how to be a better dad and husband. So these this isn't just something I I do for work. There's a good ROI in developing these things. 100%. Believe me, I you know, go going through the hell, for example, as you as you have and and I have, it it sucks, but it gives you a a better uh mental, it puts you in a better mental space for those hard times that come with relationships, those hard times that come as a father, as a as a especially for me as a dad of two little girls. Um, you know, it's like uh listen, if I survived 18 years of opiates, I can handle two kids right as they get their period. You know, I hate to say that. I hate to say it, but some of those days, it's it that's what it feels like. And and you know, um, and we talked before, I admire the kind of niche and path that you have taken in advocacy as well. Is one of the reasons why I was excited to do this with you. I'm sure there are times you're like, I mean, I had to go through some really hard stuff to learn and get where you are now, but it would have been great to learn that in 17 years of struggle and not 18. You know, like, did I really need and I think, man, I would have loved to have learned all of that stuff after 18 surgeries and not 20, but yeah, alas, that'll that's the hand we are dealt, and you try to make the best of those cards. Um so to to back to answer your question, I think um one of the many ways I define advocacy is, or when somebody asks me, like, how can they contribute? I think yeah, just think about your own gifts and talent and interests. There are no two people that handle this the same way. Uh I think finding a way to utilize your capabilities, and I even see that in advocacy groups within the same like disease. Yeah, hopefully they're not all doing the exact same thing because there's pain, some patients need some patients want to learn about research. Yeah, some patients want to go get their community together and go on a walk. How wonderful that they have those options. Yeah. Um, so a lot of the stuff that you have asked about that I'm I have worked on and very proud to be a part of was just my way of thinking what what is a thing that matters to me, that I have the time and energy and ability to do. Um, and I I enjoy writing. And so when I when my kids got old enough, we're in that window where they want to come down and sit at the kitchen table and like talk about things at dinner. And so, you know, they're maybe second or third grade, and they started asking questions about how did you and mom meet? Or um, dad, tell me again why you had to have surgery about something. So when we started getting into like real conversations, Matt, if you don't mind, if you don't mind me asking, do you did you happen to have any surgeries after you had kids? The most mundane surgeries I have ever had have happened after they were born. So it was like um an eye, I mean, literally an eyelid repair from facial paralysis. So my kids think the big surgeries are like the 30-minute outpatient superficial tumor. You're like, no, no, no, I had a brain tumor and couldn't walk for six months. Like, yeah, yeah. They can't even they never wrap their head on that. Yeah. I I I asked, I I asked because my kids two, you know, three years ago got to witness my major spine surgery and to see tanks coming out of their father. And you know, coming home a day after surgery that I was under for 14 hours and experience me. I will say they got to experience me uh before surgery in opiate withdrawal, and then they got to experience this side of me. And I'm grateful that they get to experience both, whereas I would hate for them to have only experienced the worst, the worst of it. Yeah, you know, and and I I get good comes with you telling me about that because I have two daughters as well, and and I immediately go to like what what a unique opportunity for you to show strength to your little girls, um, and not in some like generic alpha way, but like what it really means to be strong and um you know, I I assume for a family to pull together and give them an example of what it means to for someone, you know, to pick people up while they're down or in sickness and in health. Um and again, this goes back to what we were talking about. I wish we could have learned these lessons in a much easier way. Well, Matt, yeah, I remember the lesson that you we had talked about quickly. You know, you had said that uh, if I'm not mistaken, a mother had told you at one point in your story, thank you for being here. I'm happy that you exist. Yeah, yeah, and that it was a pretty pivotal moment. And I don't even remember sharing that with you, but it was a pretty pivotal moment um for me. And and I can answer actually two questions in one here. When I had these kind of things come up, I thought these are really important things to me. I I enjoy writing, so I wanted to get those down on paper so that I didn't forget them. And I thought this would be kind of a neat thing for my kids to know about me. And as I started crafting those stories, that's what ended up being the book. And um and I published that two years ago after about four years of work. And it is novel, it's not a collection of stories, but it's my memoir of um all of the things that I really needed to hear when I was 22, but had but didn't have them. So when I started wondering where am I sure, what direction am I taking this? My course correction was always, is this what 22-year-old me needed to hear? And if it wasn't, uh it didn't go in the book. And so one of the stories that you know, so there's a lot of personal things in there, and one of them that I didn't put in because uh it um it wasn't what 22-year-old need me needed to hear, it's probably what 45-year-old me needed. Um, one of those first advocacy events that I went to that I told you I I wanted to get involved, but I thought this is not for me. Um I finally went back after uh a decade of just sort of trying to get through my own stuff. And I remember diving to this small university campus in Chicago, and I walk in, and every conference ever, you walk in, and there's very friendly people at a table helping you. You know, here's a name tag and a Sharpie. So it was that, and I put my name on a name tag and I looked up, and it was uh a neurofibromatosis advocacy event, and I saw a gentleman my age, and he was being fed by his mom. And I have since gotten to know that family, and they're wonderful people. But at the time, it took it it was scary for me to walk into those doors, and I remember thinking, I'm not, I'm still not ready for what my future might look like with this disease. And so I put the name tag back down, I put the marker back down and kind of pulled the name tag in in half, and I turned around to leave and thought, some of the time. So I had I had driven there, so I was coming from work, had you know my dress shoes and car keys and work bag. And as I was walking out, a mom through the double doors um was about to step aside for me to leave, and then she stepped in front of me instead and and kind of looked up and down and said, um, and she hadn't even gotten to the place yet. And she said, Do you have NF? And I said, Yeah, I have uh neurofibromatosis type two. And so just now having you know a polite conversation, and I thought that would be the end of it. And she I saw her look at my car keys, and I saw her look at the tag on my bag, and I saw her look at like just me being there, and around a time she had a little boy behind her that was you know maybe eight years old, and he stepped next to her and she put her hand on his head and looked back at me and said, I said, I'm so glad you exist. And I thought he here I was like trying to be because I wasn't ready for this, but that was a huge moment for me to recognize like this is not all about me. Like, yeah, put aside that, like my own fear, my own like worries. I just going to this and being somebody that drove themselves. And as I talked to the mom more, I was the first adult with neurofibromatosis two that she had ever met. And so in that moment, she was probably way more scared than I was. Um, I mean, you you you and I know the feeling like, hit me with anything, but don't do it to my kids. And I know so here she is worried not for her, but for her own kid. And in that moment, I'm trying to think like, should I be here or not? All she needed that day was to see evidence that her kid could be an adult. And I and it and I say it was a pivot for me because it went from me thinking about what what do I want to get out of this event? What do I want to learn or what do I want to see or not see? To what do I have to contribute, or what do I have? And I don't think it's too dramatic to say that was the day I went from feeling like a patient to feeling like a patient advocate. And I didn't realize that at the time, but looking back, I think about that moment a lot. That's that's absolutely an amazing story, and I appreciate you sharing that because I think so many people go through so much. I mean, my one of my favorite quotes is from Jamie Kern Lima, whose message is very simple, which is your mess becomes your message. And you know, we both have very large messes, um, and there's a lot to talk about. Now to dive into yours a little bit, I think it's important for people to know, you know, no matter what where you are in your career, um, passion is still important, right? So you started out, you know, it's it's only been what how long have you been in the industry uh uh for a whole thus far? So I spent the first 20 years of my career selling coupons. Yeah, there you go. And and uh so when people tell me like, what's the path working in advocacy? I'm like, well, heck if I know, because um, but once I got to a point where I thought I need to be doing more, and then and it's a question I get, um, like, what is something that you care about deeply? Is there an area that, you know, did you lose a parent to something or a family member affected by something? And every patient advocacy group is in need of support, whether it's your time or your money, somebody to like pick up trash after a 5k. There's always a way to contribute. So find something you care about. I got to a point where I was with my job. I mean, I had I had great people around me, but I did never intended to have a 20-year career in coupon sales. Sure. But when I'd gone through what I had gone through to have a great health insurance was really important. Having a team that understood what I was going was important, and I stayed there for all of those reasons. Um you know, I mentioned getting laid off, and it's and boy, at the time I never imagined he'd he'd be here talking about it on with somebody publicly, but yeah, that forced a reset for me of okay, now you don't have that insurance, you're 40 years old. What do you want to do? And it's it's terrifying. And I thought, oh, I'll go out with this experience, and I'm not proud to say, but be honest that it it took me a year to find a job. And I know no one was going to say, and that's super humbling. Nope, nobody, and I don't think people were like, hey, we're not gonna hire the rare disease guy. I don't think that happened, but I think I let that concern make big such a thing for me that I probably wasn't preparing for interviews. I was using it as an excuse. And I wasn't preparing for interviews. I wasn't I wasn't doing what I should have been doing because I was leaning on that as just an excuse. I was very fortunate to end up um getting a job with a um uh medical device startup, and it was incredibly rewarding for me because they were selling to uh audiologists and trying to grow in a hearing care world, and there's a big life lesson here. I went from being in an environment where I was glad that people tolerated me to being in an environment where they were like, no man, all of those things you've dealt with, that's why we won't like like don't tolerate them, we value them. Yeah, and I thought, I mean, even saying that out loud right now, that sounds like a children's book, you know, like surrounding yourself people with people that that get you. And my role there was in sales getting and to launch sales and marketing, and we struggled at first, and I realized through some trial and error that we were not really thinking about patients and we were not thinking about the patient experience. And so one day after a I came back after a week of frustratingly poor sales calls where everything was going right, but we weren't getting the signature, and then kind of reflecting that on a flight back from Denver and realized that I just had a week of calls with um doctors of audiology and people in hearing care, and I had never once talked about patient or patient experience, and I was talking about like the data of decibel improvement, but I wasn't talking about people being able to hear their granddaughter say, I love you, or birds chirping. And I thought, why did I feel like I had to check all of this advocacy stuff that I care about at the door to my job? Yeah, and and I came back that day and on a whiteboard um in a conference room, wrote, stop selling and start advocating. And I I would love to say it was like a Hollywood movie where the next day, like everything took off, it was all rainbows and unicorns, but they're still in business. And uh the company established a culture and reputation for being very patient-focused and patient-minded. And it's one of the things professionally I am most proud of. And once I got into that mindset, and now at this point, I'm working with a lot of different rare disease patient advocacy groups and good uh being invited to go to Capitol Hill to um to ask Congress for research funding. And all these little things that like here and here and here started to connect, and I like to phrase it as I I accidentally became really qualified to be a professional advocate, and now for almost the last five years, have been um focused solely on rare disease patient advocacy. Um, and it's the it's the best and hardest job I've ever had. I I I love that you say it's the best and the hardest job that you've ever had. You know, you and Noel Wiley flying into DC to do the hard work that that's needed to be done there. Um probably not in scrubs, but hey, you know, we it it takes what it takes. You know, the um I don't think patients understand, and I and I'm I that's the reason that we started this podcast. I don't think patients they look at the industry as a whole and will say they don't get me or they don't understand or they're not thinking about me. And you know, for our audience's sake, just so everyone's aware, we're not talking about Matt's company, we're not talking about the products that he's aligned with or any of those sorts of things, because it ultimately Matt's company is one of the best at doing it because of people like Matt. And that's honestly, that's not coming from me, that's coming from the market research that we do every year. Matt's mentioned by name every year, um, but because of his approach to it. But Matt, you referenced it that it's uh a very rewarding job, but a very difficult job. Maybe you can talk a little bit about what that looks like in the industry, but people help people understand that there are people fighting for them every day. Sure, gladly. And I think as you were saying all of that, one of the things that was going through my head was um, man, that's our fault. We've got to fix that. We've got to fix that because the patient's perception is reality. If they feel like they're disconnected or they're not being thought of, that perception is reality. And I don't want anybody to feel that way. So as you were saying that, I'm like making this mental note. What can we do to make sure, you know, to be better about making sure that's not happening? Um, so if you if you can't tell by now, I I enjoy storytelling. And uh so I will answer your question with a little with another story. I love it. I love it. Um this is not uncommon to rare disease. Earlier in January, I found myself unexpectedly at the ER all day waiting for an MRI, um, right after a holiday weekend where it's like hour eight, you know, and you still haven't had your scan. So it was a frustrating day um for me and my wife was there too. Um, and after all of that, finally at the end of a very long day, the attending physician came in, and you know, you're starting to think, these people not know what they do, and have they forgotten about me? Is this a waste of time? And the attending came in and she was awesome. Like she knew about NF2, even though it impacts 140,000 people. She knew about, she was asking incredibly informed questions and talking about a lot of different aspects of how it manifests itself as a disease. And even my wife and I, who've been, you know, not our first rodeo, we know we've seen a full spectrum of doctors. And I remember commenting to her, I was like, I I'm thank you for this today. Like it's been a really long day, and you have made this all worthwhile. And I'm just so impressed by how much you know about everything. And so her answer, um, I will quote a hundred more times in my life. She said, you know, in the ER, it's a teaching hospital at IU. She said in the ER, um, I trained my team that we have to be the best at emergency medicine, and we have to be the second best at everything else. And I and before she can even explain it, I thought I had that reaction. I thought I know exactly what you mean. She's like, I work with brilliant cardiologists and neurosurgeons and orthopedists, and I don't need to know everything about their job, but I need to know enough to know where to send you and what to recommend. Yeah. And so you probably can see where I'm going with this, is I heard that I think about that a lot in advocacy because I have to know a little bit about what we're doing at RD, in medical affairs, in marketing, in um corporate communications. And I'm I'm very fortunate to work with people that are awesome at their jobs. And so I'm really glad I don't have to know as much as they know because I know a lot. But and even if I'm not, I don't always uh uh I don't always know the second best. I aspire to know it the second best. Um, and I think, and if somebody asks why is that, I'm like, because patients and patient communities deserve that. If I'm the one that has the very good fortune of going to a patient summit or speaking in front of patients at a conference, you're darn right. I better show up in the most informed way possible. Uh they've they deserve that. They've earned that. Yeah. You know, tell me, obviously, you know, getting into advocacy after being not in it for 22 years, uh from a professional perspective, how do you describe to your kids, maybe to your parents as well, who are uh teachers, what you do? Oh man, that's a good question. Um so here's um probably the thing that I have landed on that gives that allows people to nod when I get done. Because sometimes you explain and you're like, I know less now than before I asked that question. Um as far as I know, I have never met a patient or a family who got diagnosed with a rare disease they have never heard of and don't know how to spell. And it's like I've never met anybody who said my first call was to 1-800 pharmaceuticals or 1-800 big pharmacists. They go home and they look up the disease, uh, they look up uh supports, and they are almost always first, you know, after that, the first call is to a patient advocacy group. So it is a stretch for I think any industry partner, no matter if it's an agency, if it's um a maker of medicine, whatever they do, it is unreasonable to think we could have the impact we want to have on a patient community if we do not have a really meaningful relationship with the people those patients call on day one. And so I share that and then followed up with my job is to make sure we have a meaningful relationship with those advocacy groups. And how we define that meaningful relationship, if you ask 100 people, you're gonna get 100 answers, and I think that's good because no patient needs the same thing, no advocacy group operates the same way. So that's part of what makes the job hard is how how do I manage those relationships while while also balancing, and I think this is one of the things you do so well, while also balancing, we still work for an organization, we still work for a company that is that generates revenue and and has uh you know thinks about shareholder value. While that is not my responsibility, there's still a balance of how do we put advocacy groups and patients, how do we capture what they're saying and make sure that's reflecting our decisions, but also remember I'm guided by compliance, I'm guided by uh legal. Um I think that doing what is right for a patient and doing what is right for a business can I think both of those things can coexist. It's it's just harder. It takes more thought, it takes more effort, and I think you're you're so good about reminding people if if we think advocacy is this sort of like cute, nice thing to do, um, that's not uh that's not real good job security. Like you we have to bring it every day to let our teams know there is value in making sure we are out capturing these opinions and perceptions so that we can incorporate that into improving how we support families. I'm getting the soapboxy here, but uh no, you you you you said it so well before that as quarterback, the running back's not gonna know what the quarterback's doing, right? Let's if we put it in sports terms. And sometimes a running back is gonna want to be more glory and give me the ball and just let me do it. And it's the quarterback's job to refocus them on what the team's doing. And that's the way that's the way I see advocacy, right? As you referenced, may it be marketing or or medical or regulatory or policy, everyone's got their thing to do for the company, right? And the company is always the um uh let's face it, it's the focus, but the why is the patient, right? And and and ensuring that you can keep everyone focused on that in that ad in your advocacy role, and and that that's where it gets difficult, is when you have a lot of personalities that want to feel important, um how do you get the patient voice in? You know, in the point that you made up before uh of patients not feeling like you know, they're being heard or people don't understand their needs. Um I don't know that we will ever solve that, but I think we should all be thinking about it all the time. And it is it is unfair for me to expect you know uh a thousand people that are at a uh corporate headquarters to be able to think of things in a plain language when that is not their job. Um, so I can't I can't wonder why this is um you know you're using words that I have to look up. How how do we help make sure that an entire population of people understand this in a way that's not scary? That's also part of our job is making sure we act as a conduit between what's happening out in a patient community and what's happening uh within a business. So, and that's why I say you could get a hundred different answers on what the job is because it could be all about that. I think yeah, and this isn't a question you ask, but now uh you're causing me to do some like real-time reflection here with your questions. Uh I don't think having a rare disease in any way qualifies me to do this job. I don't think that I can say, because I have this, I can do this. I think it was a catalyst and motivation for me to develop the skills that it takes to do that job. Um and I mean I I work, I think that a lot of times we find people in a in particular in rare disease that are impacted, but it's also because way more people are impacted by rare disease than we ever realize. I mean, if you ever ask in a room, you're gonna see a lot more hands go up. Yeah, I use and nobody ever makes me feel this way, but this is just kind of peek into my psyche, is yeah, nobody's ever made me feel like I have this job because of a rare disease, but I don't want anyone to ever think that for a second. So some of the things you asked about before going back to school, some of that is, I don't know if I've ever even verbalized this out loud, some of that is me trying to prove to myself that I've earned the right to be here. Um and um I I don't know if that's unhealthy or healthy, um, but it's the truth. Yeah, and and but you know what? I think that's what that that um that honesty, the the integrity that you approach everything with, but also the humility is what makes you such a great advocate. And what we are, you know, to be quite clear, what I see in the data and in anecdotal stories from advocates that have worked with you in the past, it it is that attention to detail and a focus on always ensuring that A, you're gonna get it right for the patient and for that advocacy organization, but most importantly, that you don't have to be the expert. Yeah, I hear from advocates all the time that we have to help educate on the fact, as you referenced before, we can't expect that 100 out of 100 patients are going to think of the pharmaceutical industry number one, right, when they get a diagnosis. It's just not the case. And a lot of that's legal and compliance and federal law and where what we're allowed to do and what we're allowed to say, and it's just never going to allow for that closeness, so to speak, of a relationship. And perhaps that's healthy. Um but at the same time, it's your ability to go out to develop those relationships and to seek on the patient's behalf that next step and and what else is holding them back and how what are the issues and the barriers that are ever changing? Right. Um, and I think that it's it's it's important to recognize that you've done that well because of the skills that you developed over time that now continue to bring bring you back to playing detective and quarterback in a very large organization. Well, and and thank you. And I would be remiss if I didn't give nearly all of that credit to uh being very, very fortunate to work around and with leaders in advocacy, not yeah, not just managers, but like leaders of people that are looking ahead to who are we and what do we want to be, and what impact do we want to have in five years or ten years? Or people asking me, so what? Okay, you went to this event, you had a you were at a table or you spoke on stage. So what? What did that do long term to help a family feel more supportive or have better access to care? So I think being surrounded, I've been very, very lucky to be around those people or people like that. And then the second thing is um sometimes it feels a little inappropriate for me to be talking about like work to improve access. My whole life, I have been so lucky to have great insurance and great access to care or great access to information. And um I did not appreciate any of that at the time. You know, you've heard the states, I think. Um I think I saw just most recently in Nord where the average time to diagnose this in rare disease is like four and a half years. I got an accurate diagnosis in four days. And yeah. And it it did not feel lucky to have somebody say, Hey, guess what? You have brain tumors. That did not feel lucky. Um, but I know now it was because we had a plan in place and I knew who I was going to go see and what treatment options were available. Um, I had all of that within a week. And so I also have this added motivation of doing this work that like I was so fortunate, and I know that so many things I'm able to do in my life personally, professionally, all because of that. So I feel a bit of a responsibility to pay that back and make sure other people, you know, what can I do to help reduce that four and a half years? Yeah. Um, maybe in the four days isn't reasonable for everybody. But I had that, and I know how much of my life, the wonderful things in my life, or because of that. How could I not? How can I just sit on the couch? Yeah, not trying to do something to make sure somebody else uh shares that experience. So I I you know, I sometimes will tell people that you know I I'm deaf, I have brain tumors, spine tumors, 20 surgeries, facial paralysis, can't feel my face, and I'm the luckiest dude in the world. And I and I really think that. So yeah, that's fantastic. I mean, it it it you know, going through everything that you have, I can't even pretend to know what it what it feels like, but I I would say tell the same thing to people and they're asked wow, was it you know, was it worth it? You know, I would do it all over again. Honestly, yeah. You know, I yeah, it sucked. Yes. Do I wish it was shorter, as you said? Yeah, I mean, I would have I wish I would have could have learned that all in a couple days, um, and what the right sir, who the right surgeon was and what the right prognosis was, and not chase that down for 18 years. But what it exposed me to, what I learned from it, the people I got to meet out of it. Um I I constantly tell people I would have I wouldn't change any bit of it. Um but I'm I know that at the same time there are, as you've referenced, mil hundreds of thousands, if not millions, of others in this world, maybe even in the United States that aren't nearly as lucky. Um actually a question for you out of curiosity, is NF2 um part of any newborn screening programs by any states? No. Um, you know, and I was mosaic, so I was a uh I'm a uh spontaneous mutation, so it was not on the radar to be looking for. Um and and then um and I I don't you you you have to pick your battles a little bit, but I guess I don't really even blame the system for not having screening for something that impacts one in 40,000 people. I mean our our hospital systems are busy enough that it's hard to think, why are you looking for zebras? You know what I realize we all would like that. Yeah. But it it's hard to manage all the horses and look for 10,000 zebras, you know, every single day. So I I don't felt that, but I had never heard of the disease um until I got diagnosed. I had never I never met anybody else. Obviously, no family history. Never, um never, and I mean I can still barely spell it. Um I didn't meet anybody else with NF2 for several years. Um and so you know I experienced a lot of that loneliness of yeah, I have great college friends and my girlfriend, now wife, who were super supportive of everything, but I still felt super alone because none of you has like I'm walking around with a an anvil over my head, like a cartoon of Wiley kind of sure, and that's that is my life forever. Every headache I have for the rest of my life, there'll be a little voice that makes me wonder is this is my brain tumor growing? Yeah. How we we joke about stuff, we they're a wonderful group of people, but none of them will ever be, and I hope none of them can ever relate to that, you know. Sure, yeah. And so there is a sense of loneliness. Um and I got that as I got the courage to get back involved in advocacy work. I started feeling that cloud, that anvil got a little bit smaller. It's still there, but it's a whole lot smaller, and you know, the little the cartoon view of it appears in my head less often than it used to. Um, so that's what got out of that was that feeling of community. And I thought, I don't need that. You don't realize how much you need it until you've got it. Yeah, that's right. You know, um, I don't think patients are aware of how important their voice is in medical research. As an industry to better inform patients, you're so much again going back to rare disease, if something impacts one in a hundred thousand people, it's really challenging to get together an advice board or to bring people to Washington, DC, because there's so few of them. However, advocacy groups exist to have maybe a bit more, they they already have the trust of those teens, those uh patients and families, which is why going back to what we talked about before, it's important to have those relationships. So I started looking into how we can better engage advocacy groups and that type of research. And much to my surprise, as I was doing some of the pre you know work for what my dissertation was going to be, a lot of things I kept hearing from advocacy groups were well, I don't really know how you know endpoints are defined, but or I don't really know what happens in phase one and phase two, but and I thought, I think we are missing a step here because even when it's done well and people are reaching out, in my opinion, done well, and people are reaching out to advocacy groups for their voice or patient voice, I don't think anybody's taken the time to say, hey, whatever foundation or whatever society, how informed are you on how the clinical trial process works? Yeah how how how well have you been trained on what it means to validate an endpoint? And that became my dissertation is how informed are rare disease advocacy groups to meaningfully engage in the clinical trial process? And the learning that came out of that was I think there's a notable unmet need. Um, I shouldn't say that, I should say a notable opportunity to improve the way we stop for a minute and say, before I get into all of these different ways you can engage, how what do you know? What do you understand? What can I help make sure you feel confident? And what I think what a lasting way to have an impact on an on a community is not saying we need you to help us recruit for something. Yeah, yes. Uh, let us teach you why recruitment is so important and that we don't just want a population of people that live next to Mayo and um Ash General and Vanderbilt. We want yes, we want people from across the country. And um, you know, the results were pretty clear that uh I advocacy groups that I talked to would be very open to that kind of training. Um, so that then when they get asked to help define a primary point, a phase one trial, they know exactly what that means. Yes, yeah. That's so important, as you said, just to stop and listen. Um, I've had now over a dozen advocates that I've spoken with in the last couple of months, and the common theme that comes up is we have to listen well. We have to stop trying to always talk or push or say, here's what our priority is, our prior our priorities are, and just listen first. And yes, it might be about our priority that we're having a discussion, but understand where they're coming from. And the as I've said, what I continuously hear from the organizations that do it the best and the individuals that do it the best is that big ears mentality and identifying best ways to be able to move forward. As you said very early on in this discussion, not every patient is going to be ready for whatever phase, so to speak, of that patient journey that they're about to embark on. Um, and a clinical trial might not be the right thing for everyone, but at some point in time I'm a big believer that a clinical trial may be your standard of care. And if we don't do something about the lack of understanding in this country about clinical trials and about medical medicine development, we're gonna be left in a very scary place. You know, I I've um I think uh I hope at the end of this the theme will be well, that guy talked about was how lucky he was um to have an organization that buys into the importance of patient engagement um is paramount. Um and and at like the highest level, I'll say we believe in this, not just because it's the right thing to do, but it is good for our business. And those, like I mentioned, those two things can coexist. Um and you know, there was a study from Tufts a few years ago that you've probably seen, like the average cost of a clinical trial is X amount, and that um I think, and this goes into what I enjoy so much about uh the work you do and the things you share, is this isn't this isn't just a nice thing to do. This is good business. Um and it's good for patients, it's good like how how rare in life is there like a win-win-win? And that's what exactly what this is. So uh I don't know what kind of preaching to the choir to each other here, but yeah, um, I I think I'm trying to think for people listening, okay, okay, Matt, Matt, what do I do with this information? Yeah. Um and so my take would be just the importance of recognizing that everybody is moving and your company moves in the same direction about recognizing the value in this, because I can imagine it would be very, very frustrating to do this work if you didn't have people you work with see the value in doing it. Um, you know, don't go decorate tables. That's not my my job is not table decoration. And yes, um, and if you if you're in a job similar to mine and you feel like that's your job, what do we do about that? Like how do we elevate uh that work? Well, I love that you said that because to be quite honest with you, I've developed a assessment um that allows individuals in the advocacy function to take it's called our uh our advocacy influence diagnostic. And it quite simply, through 23 questions, allows you to self-assess, you know, what are we involved in? How are decisions made? Where does budget come from? Though all those sorts of discussion uh elements that that take place inside of an organization, and then quite clearly tells you, okay, this is the reality, right? We all potentially want to think that our organization is patient-centric, but there are ways that we can really sell, we can really see how patient-focused it is. Uh, but more importantly, here's what you can do about it, right? Because there are still plenty of organizations out there that don't have the buy-in on it. Um, and to be fair, the industry uh as a whole seems to change every three to four years. So new new leaders may come in that aren't aware. And that's okay, right? As you reference, as you had referenced before, depending on what their role is, maybe this shouldn't be 100% their focus. But it is our job to educate them on the value of it. I don't think anybody has ever regretted taking time to do some self-reflection, whether it's you know, formally, informally, I think it's a very healthy part of growing. So yeah, I love that. So, Matt, before we end here, I do want to talk about your TEDx because I want patients to have the opportunity, and we'll link to it in the um in the notes of the of the video. Um, but tell us a little bit about your TEDx and and your your talk in general. Where where was it held? What was your focus, and where can we find it? Yeah, well, I should I want to start by letting people know I'm only about 997,000 views behind yours. So I'm right on your heels in terms of catching up to viewership. So look out. Uh, you know, I I I loved the TEDx experience. I had no idea what I was getting into. And when the opportunity presented itself, I tell anyone who will listen, and then a lot of people who don't listen, it it was the best experience I have had in taking how do you how do you take a massive belief or thought or idea and curate that down, like distill. That's the word I want to use. When you distill that down into one clear 10-minute idea where every word matters, and that's not a process in life that we get to do very often. And I thought it was the best writing preparation and speaking preparation exercise I've ever been a part of. The fact that it was a TEDx talk at the end was like gravy. I think on the cake. Yep, that's it. So and I'm sure with you too, about think about think about a hundred different things we've talked about here. How do you pick one that you want to that you want a million people to have watched? And that's that's hard. Um much ends up on the cutting room floor that you're like, I wish I could have said this. Uh for me, um, I think embracing the idea of a TEDx talk is not a storytelling, it is what is a unique idea that you want to spread. Yeah. For which you are the the most appropriate person in the world to share that idea. And I it's just kind of a fundamental exercise to think what would that be. Um, I mentioned using my hearing. Everybody has one. I'm a believer that everybody's got one, right? I mean, there's just uh I mean, hearing loss, my rare disease is uncommon, hearing loss, wildly common. Mine is a little bit more extreme, is because of benign brain tumors, I've I'm I'm totally deaf. I got this implant that looks like a cochlear implant, but I actually have 12 electrodes sewn onto my brainstem. So I hear when I as soon as I take this off, I'm totally deaf. And as soon as I put it back on, my whole world is noise again, which is kind of ironic that the name of this podcast is Building the Noise, and I spent 20 years relearning to hear again. Yeah. So through that process, I kind of went from 0% to 20% over several years, and then I didn't get any better, and I got very frustrated that it wasn't getting any better. And so my TED talk is about the journey that I took and the way that I embraced music as a teaching tool to learn to hear again, because the more I started learning about how we hear with our brain and not our ears, I thought, well, I can still hear with my brain. So is there a way that I can start using the Beatles to help me understand sound again? Um, and uh, I mean, not to uh I guess a bit of a spoiler, I'm having a conversation with you right now, you know, and so I obviously can uh can hear. And so my TED talk was about um the process that I undertook, not just like pragmatically to relearn here, the bit of irrational persistence of when something doesn't work and there's no clear path, sometimes you find yourself having to develop the path. You have to create that path forward. And um, and I did that, but it wasn't about you know resume creation, it was about learning to hear again, and um just had the opportunity. And I I I lived in Chicago for 20 years. I'm a Cubs fan, so having the chance to do TEDx Wrigleyville uh was pretty special too. That's fantastic. Yeah, I I completely agree with you that it is the best process of distilling your message down into that soul, you know, that burning idea that you want everyone to tackle and take on. And if you can't run it forward, you want everyone, anyone who's willing to listen to pick up on it because there's so much value there. And I had the privilege of listening to that actually yesterday. Uh, very, very well done. Um, I think, you know, as you referenced you open up so many opportunities in this discussion, but also in your in your TED talk of how do you look at life? How do you look at the circumstances that are in front of you? How do you look at your career and how do you deal with the challenges that come with normal corporate functions and layoffs and those sorts of things? And the big takeaway I have from you, Matt, is number one, to listen and to listen not just for the noise that's coming at you, but to listen to what the world around you sometimes is saying, and at other times you gotta block it out. Right? So listen, listen well, number one. Number two, yeah, yeah, it's never too late to get involved and to and to want to be your best on behalf of patients. Um, may that be because you have NF2 or not, um, but it's never too late to help those that need it. Uh, and then lastly, to share your story. I think that there's so much value, and so many people in today's world are uh either in one or one of two schools of thought. Either number one, it's all about me, or the other one, I don't want anything to be about me. And you don't have to fall into either one of those camps to just tell your story and be available, and you never know as as it happened to you, you never know whose life you're gonna change or whose whose heart you're gonna pour a little bit of hope into just by being you. So I really appreciate the time today. So, well, thank you for all of that. And I you you touched on something there at the end that is really meaningful to me because I did struggle with the attention seeking that I thought writing a book would bring. Like, who am I to write a memoir? Like, I like I said, I'm like who wants to read a memoir about the luckiest guy in the world? Um, and my wife and I were talking about this, and she said something um to the degree of if you've been through something that will help somebody else, it's not selfish to write about it, it's actually selfish to not uh share that. And I thought, oh my goodness, like in in 20 seconds, she just resolved weeks of internal conflict. She goes, and besides, if everybody felt that way, the library would be totally empty. And I'm like, all right, yeah, that that makes sense. So yeah, you're exactly right. Share your story, and then you know if you do it in an authentic way where you want to you're sharing it to help somebody else, what's the downside of it? There's no downside, exactly. The upside is you might be somebody that like quite literally changes somebody's life. Then you know, we um never know how our words are gonna impact somebody, and I think that's all magnified when you start talking about somebody's health or the health of their children. So yeah, I appreciate that. And I know I know this isn't how you wanted to end it, but we're gonna do it anyway. Um, I hope people spend more time checking out the work that you are doing because thank you. You know, I I knew I knew of you um before I met you because I thought what you are sharing about the way um patient advocates need to be mindful of um sometimes quantifying an impact or sometimes recognizing the field in which they work. You were a voice that I had not heard addressing that, and it really resonated with me. So when you connected with me about this, um I couldn't say yes fast enough because um I respect the and appreciate the work that you're doing. So I hope folks check that out. I really appreciate that. And uh with that, Matt, we're gonna sign off and we'll I look forward to watching you continue to work your magic with patient advocacy in your organization. Thanks a lot, Matt.