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This is the Leap Together podcast, where we highlight top leaders driving breakthroughs in clinical research and life sciences.
If you're not afraid of like making a mistake or failing, you know, it's like that's what happens. Just have to try things. You just figure out, okay, well that didn't really work. You go, oh, no, look, a part of it did work. Take that little part and you put it over here and you go, oh, cool. I wouldn't have known that if I wouldn't have tried this.
Zach:Welcome to Leap Together, a podcast dedicated to the incredible individuals who are shaping the future of medicine. I'm your host, Zach Gobst, founder and CEO of Leapcure. And that was today's guest, Christine Gustafson, founder and CEO of the Thyroid Eye Disease Community Organization. Christine brings a powerful voice to those navigating treatments and clinical research for Thyroid Eye Disease. And in today's episode, we'll explore how organizations like Christine's are built from the ground up to create community, clarity, and hope globally.
Zach:Thank you all for joining us. This episode is brought to you by Leapcure, the leader in patient engagement and recruitment for clinical trials. Leapcure's equitable and empathetic process accelerates research while empowering patient advocacy. Hundreds of studies and millions of patients across more than 50 countries have used Leapcure to contribute to a participation average of 62%. Visit leapcure.com to learn more.
Zach:I wanna give a thanks to the advocacy folks on the team at Leapcure, Laura Brencher, in particular. I wouldn't know where Leapcure would be without her. She's been with us since 2018, has made an incredible business partner to me over the years, making sure that our approach to advocacy is increasingly meaningful and impactful, and to help make the intro to our guest today. Who we're on to now, we're really fortunate to be with Christine Gustafson, the CEO of the TED Community Organization, which is the only nonprofit dedicated to Thyroid Eye Disease. She is also a TED patient and is passionate about the innovative and life changing programs that the TED community has to offer at no cost to TED patients around the world.
Zach:I'd like to add Christine's a special advocacy leader from what I've seen in the interactions I've had. She's been incredibly thoughtful about how to bring people together and enable meaningful communities to to be impactful in advocacy. Christine, thanks for being on the show.
Christine:Oh, yeah. Thanks for having me on your show. Really great to be here. Yeah. Just I really love what you guys are doing.
Christine:And that was a nice mention for Laura because she has also we have crossed paths with the TED community and Leapcure. I think that she's been the one who started the relationship and just a really quality person. So, yes, great she's on your team.
Zach:Yeah. It's really fortunate for us to have had the run we've had with Laura, and glad to hear from folks like you how well it's gone. So I want to start the podcast episode asking you a little bit about what what your reflections are on your journey going from TED patient to now nonprofit leader for TED. What are some of the most insightful or inflection point insights that you've seen that that you think that are interesting to you looking back at this moment?
Christine:Yeah, it's one of those things like, wow, anything can happen in life. You know, you just, you don't know. Because when I got TED, I was diagnosed with Graves' Disease and Thyroid Eye Disease in 2009. And at that time, it was just they were lumped together and TED was seen as a symptom basically of Graves' Disease. Just like you might have a rapid heartbeat, You might have anxiety with Graves and it could affect your eyes, which meant they could swell, possibly push out of their sockets, get very red.
Christine:It was a symptom. And so, there wasn't a real treatment for it. They just said you have to just wait and then see how it progresses. And if it gets really bad a couple years down the road, we'll do some surgery. But that's only for extreme cases.
Christine:Use lots of eye drops, bye! That was it. Then I just slowly, sometimes quickly watch my face deform with my eyes pushing out. And of course, the people around me reacting strangers, people that don't know me, people that knew me reacted with concern. People that didn't know me were a little like shocked and children were frightened. So for children, they would hide behind their parents and cry.
Christine:That was a really frequent thing that would happen. It's because I looked very scary. You don't normally see someone with their eyes sitting on their cheeks in a sense. So, it was a different time. There was not any education about it like we have now.
Christine:You know, there's a lot of public information about Thyroid Eye Disease. They don't lump it in with Graves' disease. They know that they're associated, but they're two separate autoimmunions that run side by side. So that was and then I didn't meet another TED patient until I was maybe ten years went by. So I was really on a solo journey along with my husband, Frank, who's very supportive and our little Siamese sweet pea.
Christine:So, they were like my little marching buddies through this journey. But yeah, there was nobody really to talk with or relate to as I went through it. And so that's why I say it's funny how things that can happen in life, because how do you go from there to now being the CEO of the TED community organization, which is global? I'm surrounded by TED patients. It's like they're coming in on my text, my phone, through my email.
Christine:I see them in person where it's just like they're everywhere. And I feel a bit of a magnet for TED patients. And it's so great because we've created a very safe environment for people like myself who are feeling very frightened and alone. That safe space just melts away so much of the terror. Heard from a fellow yesterday, he's a surgeon.
Christine:He's on the East Coast and he had Graves' and then he got TED And now he can't do his surgery because of his he's seen double. And also his eyes are pushing out and he's horrified. He's this big, strong man. To me, he's got, you could tell he's really buff.
Christine:He's this guy works out. He's a man of the world, but he's got TED and he's terrified. And I was glad to be there to talk to him. Yeah, it's really great to have that space. And then we just want to make sure people find us, that when they need help, that they're able to find us.
Christine:Yeah. So, going from just me in a little silo with my eyes sitting on my cheeks and just having to wait and watch my face just form and just put in eye drops and just think, oh, I wonder if someday I'm going to need surgery. What do they how do they put your eyes back in their sockets? Wow, what's that going to be like? It's brutal.
Christine:I'll tell you that. Seven surgeries later. But yeah, so that's a little bit of the, a long look at what like a starting point. And then, of course, there's quite a story in between about how I, a very tiny person who is a little bit shy, got into this position with all of these TED patients and all of our wonderful partners.
Zach:You spoke about the terror that unfortunate it's an unfortunate kind of starting point for many when patients are faced with this diagnosis. And there's maybe a life path that they thought was gonna be available to them and and is threatened now. And you mentioned that, and you mentioned that you went ten years yourself without meeting anyone else who's in a relatable situation quite the same way. Speak to me about what it was like to actually have that first meeting with another TED patient for you, and I'd be curious about what you're seeing from your community as well, being able to connect folks that that kind of have had this common kind of struggle and common kind of terrifying experience. Interested in kind of what, yeah, your experience was and what you're starting to observe running the TED community.
Christine:Yes. It's really a great question. And so, the first time I was I got invited on to what was called a TED Council, and these were TED patients brought together to maybe inform some of the decisions of a pharmaceutical company that's developing that was developing a treatment for TED. And so they went to different doctors and said, hey, do you have a TED patient? And so my doctor recommended me for that.
Christine:And then we had an in person meeting. And I wondered beforehand, I thought, are we going to just all walk in and stare at each other's eyes just to see like, where are you at with TED? And we did. Like we were just kind of checking each other's eyes and really understanding the different phases. Like somebody had like big cauliflowers around their eyes.
Christine:And I at that point had already had the surgeries. So, I was looking fairly normal. But anyway, yeah, it was really fun because you could- are certain things that happen when you have TED that only you would relate to. Like someone pulls out a camera, It happens like daily and they go, hey, let's get a group shot. And then but if you're a TED patient, generally what you do is you duck out of the picture.
Christine:We all know that you just duck out of the picture or you grab your sunglasses. You just you don't let people just take your picture. It's a horrifying experience. Oh my god. A camera.
Christine:And then you might be walking by a mirror. And it's normal. I work out at a gym and I'm in the women's locker room and almost without exception, everyone that walks in looks in the mirror. That's the first thing they do. And then they walk into where the lockers are.
Christine:I never look in mirrors. Even to this day, it's really hard for me to look in a mirror. And so you realize that in avoiding children, you kind of sidestep children don't look them, don't make eye contact. And you can just love children to pieces, but you can't because of their reaction can be so frightening for them. So, yeah, there's things that one TED patient talking to another TED patient, start swapping stories.
Christine:And I can't help but get teary eyed about it because when we bring TED patients together for workshops and they'll say things like, oh my God, I found my people. They'll say, oh, everything just changed for me. Everything just changed. Just walking in this room, it just changed my life. It's because they had been living so alone and so frightened.
Christine:And they walked in. And here you've got, like I said, you've got a surgeon, you've got a politician, you've got a banker, someone who's like high up in a bank, you've got a mom. And it just goes on and on. And you think, oh, wow. I spoke one time with a large company and they said, what is it like you have TED?
Christine:What is it like being a TED patient? And I said, I'm you. I'm you. Like, you got up this morning. You're thinking, what should I wear?
Christine:Do I have time to get a workout in before the meeting? I have to remember don't eat any sugar. It's really not making me feel very good. Go through all this. I said, you're me.
Christine:Except when you look in the mirror, all of a sudden you don't recognize who you're looking at and you get really scared and you say, oh my God, what's going on with my face? And then maybe you see double and then you walk into the room at your meeting and people are like looking away, like trying not to stare and everything changes. I said, so it's it's like you're just a regular person. You're not different from anybody else. But something's gone terribly wrong in your immune system and it's causing swelling behind your eyes.
Christine:And the swelling behind your eyes, they take up all the space where your eyes are supposed to be. So your socket gets all full of this swelling and it pushes your eyes can't go anywhere else And it pushes them out of their sockets. And for some people, it's very extreme like it was for me. And other people, it's minimal. And for others, it's not only that physical deformation, but it's they could lose their sight.
Christine:So, the swelling can press on the optic nerve and then they can go blind. So, it has some very serious implications. But the coming together of TED patients and you look around and you go, these are very bright, accomplished people. Just unbelievable how it just takes your life and just turns it right upside down. Yeah, it's a it's a mixed feeling.
Christine:It's, oh my god, I'm so glad you're here. I'm part of the community. Oh, I'm so sorry you have Ted. Yeah.
Zach:Yeah. It sounds from what you're describing there. There's so much that to cope with what is going on physiologically. There's kind of new behaviors that you have to adapt and things that may be internalized. And by finding others in the community going through it, you know, you're able to have a shared space, and that's what you spoke about before.
Zach:I liked, you know, what when you mentioned that you're having folks from all over the world messaging you, this kind of, like, early community building process, I'm fascinated about where you are in your stage of advocacy, which is from the ground up building building a community and without, like, kind of big processes, just inviting people in and the process of, like, creating that space. I'm curious where that comes from for you. You spoke a little bit about not wanting people to be alone, but all of the energy and heart that you put into it. Curious to to learn more about where that comes from for you.
Christine:You're the CEO of Leapcure. Right? So you know what it is to have an idea.
Zach:Yeah.
Christine:And you just it's it's an idea starts. And someone had said to me, I was trying to help somebody who had Ted and help get her some information. She's in Canada. And I said, gosh, I'm having a really hard time finding any one place And there's multiple places, but sometimes the information is conflicting.
Christine:And so the woman said it's because there's no dedicated nonprofit for Thyroid Eye Disease. And I'm an entrepreneur. I'm not from the nonprofit space, so it pretty much went right over me. Okay. Is that important for a nonprofit?
Christine:Like, how does that- what difference is that going to make? And so, she said, it's very important. When she said it, it was like, okay, so you probably get certain ideas. Right? And then they're like, that's a good idea, but it's not worth pursuing.
Christine:Or something might come up and you just get obsessed with it. Right? You go, Oh my God, you can't get rid of that idea. It's just follows you everywhere. You just want to talk to everyone.
Christine:Go, Please stop talking about that. But anyway, it's an idea that's grabbed a hold of you and you just can't seem to shake it. But in this case, what happened is like it was weird. It was like there was this huge nod from the universe when she said it's very important. It's almost like, oh, okay, it's very important.
Christine:She didn't say you should start a nonprofit, but it was like this nod from the universe. And I thought, oh, no, don't pick on me. Like, I'm a very busy person. Give this idea to somebody else. But I actually felt like someone had given me this idea as a steward.
Christine:It's like we're handing you this idea. We'll help you all the way through. But we're entrusting it to you, and I thought you're having a bad day because I am not the right person for this idea. So anyway, you just don't argue with something like that. They go, Okay, I'll just ask around.
Christine:And so anyway, it's not like hearing voices, but you've had that. You've just had that and you just have to just have to honor it because it's to chase you down if you just don't say, Okay, I'll check into it. I put it on my list. It's getting handled. But I started asking people.
Christine:And the first person I asked was Nancy Patterson, had started the Graves' Disease and Thyroid Foundation. And they have TED under their umbrella. And I said, Hey, Nancy. I was talking to somebody. They said they thought that there should be a dedicated nonprofit for TED.
Christine:And I said, but you guys have that covered, right? I was trying to get the idea to back off. And she says, no, not well enough. It really needs its own nonprofit. Go.
Christine:Oh, thank you. Okay, Thank you for that. So anyway, just from there, as I pursued the idea, start asking people just sure enough, just what that initial intuition told me is just go forward. We'll open the doors. You know, we just need you to carry that.
Christine:Carry it. Carry the idea. Build it out. That's what you do as an entrepreneur. You go, here's an idea.
Christine:You go, okay, let's just put some wings on it and see if it flies. You throw it out, crashes. You go, okay, crash. No. The wings were too big.
Christine:Make them smaller. So, okay, let's try it again. So, anyway, I know how to do that with an idea. I know how to build out ideas, and I know how to build out lines of communication. So, I'm a designer, website designer, and like, I do marketing.
Christine:So, I know that you can have a really great idea. But if you don't have the visuals to go with it, the lines of communication, it's dead in the water. So, I designed the website. I put up a survey, started building out these lines of communication. And it's like, oh, wow, look at all these people are like writing back to me, sending me emails.
Christine:And then we started getting people who are like more corporate working on TED came to us, like big companies, about six or seven of them, came to us and said, Hey, we noticed you're doing something there. And so I go, Oh yeah. So I told them about the idea and what we're growing. They go, Oh, can we participate too? I go, Sure.
Christine:Come on in. Plenty of room. So anyway, that's how it's grown. And so it's really, it's just me and now others helping me, building ideas, building out the idea. I asked them, the TED patients, they said, Hey, what do you guys want?
Christine:Like, ideally, I gave them a list. I go, just check off the things that you think are important. Support group coming together in person, a forum, art. Do you want to do art together? They checked everything.
Christine:Just weren't even discriminating. This is yes, we have it all. So I go, okay, someone's going to have to help me. And so then I just get people to help me. Now we have a very robust art program.
Christine:It's our advocacy, beautiful art. A couple of days ago we had, I think 14 people came together and we did a big art project. And just the conversation, the laughing. I was telling them, I said, when you guys laugh, it's anti inflammatory. I said, so you guys coming together laughing is you're actually causing your body to heal.
Christine:And so we're working on a quality of life program to look how our lifestyle TED. Can we have some agency in our healing journey? We talk about clinical trials. Are clinical trials a treatment option? Is that something that we can all look into?
Christine:So, we try to do research for ourselves, but also for each other. And that's the neat thing that's happened out of the community because they'll say, hey, someone's doing this research study and they need 30 of us to participate. I called, Can you guys help me with that? Oh, my gosh. They're like, Yeah, we're on it.
Christine:They're like, great. And the latest one, go, We have to give blood. Someone comes to your house and you have to give blood. I did it and I'm really a wimp with needles. And I said, but it's really super easy.
Christine:I go, can you guys just give a little blood for Ted? Oh, yeah. All over the country. They're like, yeah, I'll give blood. They're great.
Christine:That really support the research and support each other. And then all of our programs are running now. And yeah.
Zach:The parallels between kind of your stage of advocacy and the way that you think of advocacy and entrepreneurship is really fascinating because, yeah, like you'd mentioned, like, when I think of how there there's an unmet need in the market And, like, you're validating with the Graves' organizations. Oh, is there is there anything else going on here? No. Actually, that's not the case. And I've got something within me where it's important.
Zach:I'm not leaving this idea. I wanna go for it. It's very similar to, like, when I reflect on when I started my company. When I worked in the space, I didn't see anyone doing patient recruitment in a way where they're bringing advocacy and empowering advocacy in a way I thought would be most effective. It's and then along your journey when you talked about how you've taken off with how art became a bigger thing.
Zach:It started with how how to engage people in a creative way and now is becoming a vehicle to offer expression, but also bring people in and engage even more. Reminds me a lot of kind of, like, the little tactical things that have led to my company. It was you know, we're about ten years old, Takeoff. Yeah. I love that because usually, you think of advocacy as, like, this categorically different style of organization that that has a very specific structure and that there's this fluidity, and it's driven by what matters to you.
Zach:And you're able to take issues and turn them into opportunities. All that's going into this, and that's amazing.
Christine:Yeah. There's a real freedom when you build something organically because you don't about you don't have to be perfect. Like, if you make a mistake, if we're building something, it doesn't work, say the plane crashes, you just go, oh, okay, we're new. We're just learning. And so it's not a big deal.
Christine:And we're not afraid to try new things. And the other thing, like in a business model, so, you know, if you start if you start Leapcure and you said, okay, I want to make $300,000 a year doing this. And then you work your way backwards. Just like when you're a kid, you read the answers in the back of the book. I always did that.
Christine:It was just such a stupid idea because I then I would try to figure out instead of reading the directions, you know, instead of going organically, you go, oh, here's the next step. There's the next step is I would try to look at the answer. And then I only did that with like math type of things because anyway, and then you try to work your way forward and then it just it's a mess. I did this one apron in home at class and I turned it in. It really did look pretty bad.
Christine:And so she she said the teacher, she said, did you read the instructions? And I said, instructions. She said, yeah, they're in the envelope. I never read the instructions. So, just like I just like put it out how I thought it should go, it really did not look good.
Christine:And so I don't think it's a good way to build a company, and it's not a good way to build a nonprofit. It's better that you just do it organically. And so you you go a step at a time and needs And then you can't preplan a lot. You can't have a six month you can do it. But it doesn't always work that way, a one year, a ten year plan, because you get six months down the road and you go, Oh, I think that we need to put our energy over here.
Christine:You know, it's really indicated. It's clear. There's flashing lights. And so you've got to turn, make a sharp right turn here. And then you go, okay, oh, it looks like we need to go up that hill.
Christine:And so you just keep following it. And then people on the outside, they go, wow, you're building something very beautiful. And it would be great if you had, yes, we have this blueprint and it's just so perfectly organized so that we know what to do. But it's not true is that you're growing something organically and you don't even know because you're going down the path and you go, oh, I think it ends right there. Looks like we're running out of you go for a hike, right?
Christine:And you go, oh, I guess that's where the trail ends. And you get up closer and you say, oh no, it's turning. And oh, wow, look at that big vista over there that you never would have seen had you just looked ahead and go, oh, that trail ends. Let's just turn back. You just go, no, let's just go all the way and see.
Christine:Does it really end? Or is there something beyond it? So when you're growing an idea to have that kind of flexibility, that kind of curiosity, you can build just some really beautiful and useful things. And that's what we're doing is we're organic and we're, you know, we're not shy to say that does look a little messy, but we're new. We'll get it fixed.
Zach:Yeah. I like that. That's a microcosm of us taking on this kind of podcast as for Leapcure. We had this idea of, oh, a podcast can help us tell a bunch of interesting stories and expand our network. And and it it's a way to honor the people that that we've have inspired us working together, but also who's inspiring those people, and there's a bit of a chain.
Zach:But already, it's led to just wonderful interactions, getting to connect with folks like you when I'll show behind the curtains a little bit. When we reach out to you about being on the podcast, you also invited us or me to be able to be a part of a council meeting together in person. And that door opened from an endeavor, like what you said. And Yeah. Yeah.
Zach:I think people have their different flavors of entrepreneurship too, which I think is great. But I there's some kind of part kind of visionary thing going on, I think, in terms of yeah. You think about where you wanna go and work your way back, but then also you're open to one week, get going, where does it go, and what feels you're trying to figure out what feels right and to move in the direction of what you're most interested in.
Christine:Yeah. Yeah. And it's someone asked me early on, she said they were funding us. And so, was happy to give us funding, and I was happy to take the funding. And she said, Now, just where do you think you're going to go with this idea?
Christine:What do you think next? I started laughing. I said, I'm trying to keep up with the idea. I said, I'm not it's not like I'm in the driver's seat with this idea. This idea is driving this whole thing.
Christine:And she started to laugh. She goes, okay, I totally understand. But she's coming from corporate. Where are you taking this idea? I go, the idea is taking me, actually.
Christine:I hope that's not making you feel insecure, but that's going to be the truth. But it's really exciting, right? Because life is that way. And sometimes it has some big challenges to it. Life has a life of its own.
Christine:And if you can move with it and keep your curiosity, your sense of humor, and develop skills, like that's an important thing is to have skills. And I was in an interview the other day in my other work was with a consultant and a president of the company. And so they were saying about skill set. They said we have a really wide skill set. And that's really important because if you have an idea, but you don't have any skills to put behind that idea, you either have to hire like a whole bunch of people to help you, which is that's fine.
Christine:But if, like me, if I like to fix things on my own anyway, so having skills is really important. So you're finding that too, I'm sure, at Leapcure. Like, you you have to the toilet breaks. Can you fix it?
Zach:Yeah.
Christine:Not right now, but I could figure it out. Just give me the do it yourself. Get me YouTube. So you have to be resourceful and develop out a set of skills that would enable you to do well with what you're with what you're doing, trying to accomplish. Do you find that?
Christine:Like, you're you've learned a lot, gotten a lot of new skills, even podcasting. Right?
Zach:Yeah. But yeah. With different levels of proficiency. I think it is an interesting thing being a founder CEO when you're presented with something that feels outside of your wheelhouse. Yeah.
Zach:The mentality is you have to get comfortable trying to try to get proficient in something. And in some cases, I actually get there. Being a part of the sales process for our company, I had a former boss advise with me, and he was like, oh, wow. Compared to where you were years ago, how you're excelling here, you're miles better. And I think running an organization, there's not like a, hey, someone else will do this mentality.
Zach:It's this has to get done. And I think sometimes, yeah, you'll jump right both feet in. There are times too where I try to hire and or at a certain point I hire, and there's a letting go process. If I depending on how well I know what I'm hiring for, sometimes it's a letting go process. Sometimes it's just trying to empower someone else to do something, and it doesn't always go well.
Zach:Like, sometimes it's really my work before it gets handed off, and I have to recognize that. But that's an ongoing thing. Like, Leapcure's ten years old now. So the types of challenges, we're still seeing that. It's should Zach work in the business or should Zach, you know, stay in the visionary, lead or lead other leaders space?
Zach:That for us, there's still those challenges. It's just the kind of stakes where the impact is a bit wider or bigger. But I like the work. I think that's the thing is once once you figure out that you can get good at a few things you didn't realize you can get good at, I think that becomes, like, a rewarding journey for me. So podcasting, one of those things.
Zach:May maybe this is something I should hand off after a few episodes. Maybe I can continue to do podcasting more. We'll find out. But I like being able to explore that. And so far, so good.
Zach:I enjoy the process so far. So.
Christine:Yeah. You're really good at it. You're very comfortable to talk with.
Zach:Yeah.
Christine:You're very comfortable. And with too, with Leapcure, you probably the flexibility of a company itself Like, I'll give you an example from the TED community. So, somebody came to us and they said that they said we do these plain paper reviews. And it's like after a clinical study has happened, they need to present a plain paper that they can of their results. But they're normally patient reviewed.
Christine:So, they wanted us to review a study that had been about Thyroid Eye Disease asked TED patients, Is this easy to read? Is anything confusing? Could we have said something in a better way? And we really enjoyed doing that. We put together a little team.
Christine:We all reviewed it together, and then we answered the questionnaires individually. And then we turned it back in and they go, wow, you did a great job. So, would you be open to doing other disease states? So, now we're like, we're just, we're these reviewers. We have little teams of reviewers.
Christine:There's nothing that you couldn't see ahead that that would be. But it's really tuning us into like clinical trials and then like how like the whole world of clinical trials and the different ways that they're used and just that's a whole new territory. But anyway, we've developed that skill set to such a degree that we're like, Oh my gosh, there's another study. Wow, we just finished one two days ago. And so, yeah, so those kinds of things that when you're part of it is just being open, and then part of it is just being willing to learn.
Christine:So, somebody comes to you at Leapcure and they said, Can you do this or help us with something? And you think, well, we don't normally do that, but we could do it. And we don't exactly know how to do it, but we'll figure it out. Sometimes you tell people that. Sometimes you just go, oh, yeah.
Christine:We can help you with that. And you go, hope I can figure it out. It's like to yourself.
Zach:Yeah. Yeah. On my side, I see that there's a relationship between breadth and depth. Do you focus on other therapeutic areas or different types of Thyroid Eye Disease or Thyroid Eye Disease projects? So there's or or do you focus in?
Zach:But also, there's the relationship to openness with these things. And and I think you're wired like me, where sometimes it'll feel important enough that you're like, yeah, I don't know how we'll figure it out, but we'll go forward and we'll take that journey. I think more and more, think it came up in the story that you shared earlier. There's, oh, I'm worried about stretching myself too far and taking too many journeys. When you were wondering, oh, is someone else gonna do this?
Zach:Do I really need to run the TED community? I do think there is value and focus at times, but but I think the best paths I take start with openness to try everything out a little bit and then move forward. And it makes it easier to focus after you've done that too. That's that's something I'm working through and have observed. But so I yeah.
Zach:I think openness and focus both have a lot of value from what I've seen. But I am curious about how to take some of your special sauce of community building and apply it to other conditions too. I think what really stood out from the interaction we had in the past was curious about the way that you handle you know, you'll get a bunch of different ideas and solutions from different parties. And what I observed from you was you had a knack for understanding where is the win win, or how do we drive alignment? How do we get momentum to get everyone moving in the same direction when the starting point might be a lot of different ideas?
Zach:Part of that is, like, an entrepreneurial leadership perspective, but not every entrepreneur operates that way. Interested in your thought process a little bit in terms of when you have a lot of ideas that come your way, you bring things together and lead people to move in the same direction.
Christine:Yeah. So I think when you have an unmet need, which is always what's precipitating this, right, that any kind of conversation or generating ideas is because you have an unmet need. And so, you want to find the best way. And brainstorming is great because you just say, for example, we're going to put on a virtual global conference for TED. It's never been done.
Christine:We're bringing together the medical community. They're already on board to help us. It's actually going to be produced by TED patients. And then we're involving our partners too. All the people that support us also are part of that.
Christine:And so, bringing their ideas together, what should that look like, this global conference, and what topics and who should be talking about them, and how do you communicate out into the world when you have TED patients isolating all over the place just alone? And how do you build out those lines of communication? There's a lot of moving parts to it. But you always just remember what you're trying to do is to fill an unmet need. And so, you want to do the best and usually don't complicate it.
Christine:Don't complicate it. Just break it down into pieces and then build out the little pieces and put them all together. I did that with all of our programs and our website, and people said it's too many programs. You should just pick one or two. I think there's 12.
Christine:They said just pick one or two and just concentrate on those because it's just too much. And so they all fit together. Like, some people are going to want to watch a video about TED from a doctor. Some want personal stories. And some people want to get together in person.
Christine:Some people want to do art. Some people like support groups. They're just at every single support group. So, you really do need this range. It's an unmet need.
Christine:And so, let's just build each thing out individually. And then when you put it together, it's like this beautiful portfolio, TED care portfolio, I call it. And but I didn't try to it wasn't like building here or building there, but I just would build one thing at a time. And Then I just put it in the portfolio, and build another thing, put it in the portfolio. And then you just use your lines of communication and say, hey, we're going to be doing this art project.
Christine:We have somebody who's in charge of art. And we've got all the pieces in place. We actually provide art stipends for TED patients so that they can buy their art supplies. And yeah, so our partners fund us for these purposes. It's beautiful.
Christine:They got out their little paint pens, and they're really beautiful stuff. Yeah. It's a really interesting process. And you don't really have to like, you're running things. Right?
Christine:So you're, like, you're in charge. You don't really have to you wanna consult with other people, but you just go, I think we should run with this idea. Yep. And you just you don't have to, like, cut through a lot of red tape.
Zach:Yeah. I love that response and how you approach it. What I'm hearing is, like, you're you find a way to get really in touch with the unmet need. Yeah. And you give space to those needs, and you honor those needs.
Zach:And we you're in a seat similar to me. We're a founder, CEO where, yeah, that's what we wanna prioritize. Like, in a we're gonna get after it. And the work you're doing is amazing. I'm inspired from what I've been seeing from you and from the in person interactions.
Zach:And, yeah, I'll wrap the podcast just with gratitude for everything you're doing, for coming on our platform to to share a little bit about what you're doing here. And, yeah, I might ask for you to come back and kind of share your progress, how things are going sometime the next year as well.
Christine:Yeah. It'll just it'll keep looking different. If you're not afraid of making a mistake or failing as a CEO, right, you just go, okay. I just wanted to try something and it didn't work. Okay.
Christine:It's like, that's what happens. You just have to try things, but it's not personal. You just figure out, okay, that didn't really work. And you go, oh, no, look, a part of it did work. And then you just take that little part and you put it over here and you go, oh, cool.
Christine:I wouldn't have known that if I wouldn't have tried this and then hit that wall. And so it's just such a fun and creative way just to live your life, not just your work, but it's such a great way to live your life because you just wake up in the morning and you go, oh, wow, what can I do with this day? And you just feel like curiosity and inspired. And you go, someone goes, I don't feel motivated. You go, what does that mean?
Christine:Because like, you're just so busy building ideas and being curious and doing good things. You're touching lives and the people tell you all around, they'll say, oh my god, you're changing my life. You go, wow, that's so cool.
Zach:Amazing. Thanks so much, Christine. It was an absolute pleasure and looking forward to staying in touch and we'll keep you posted on those skills.
Christine:Thank you so much. Thanks.
Zach:That's a wrap on this episode of Leap Together. A heartfelt thank you to Christine Gustafson for sharing her leadership, her insight, and her unwavering dedication to the Thyroid Eye Disease community. And most of all, thank you to you, the patients, families, and advocates who make clinical research possible. Your courage, your questions, and your stories are what moves science forward. If you found today's conversation meaningful, be sure to subscribe, share, and connect with us for future episodes.
Zach:Until next time, stay informed, stay empowered, and never forget, you're a part of something bigger.