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The mission of Prevent Blindness Texas is to prevent blindness and preserve sight. We are leaders and change agents in the eye health space here to empower you!
Hey, it's your eye health experts, Prevent Blindness Texas, and welcome to Eyespiring, a conversation about all things vision and life. Hi, and welcome to Eyespiring. I'm Heather Patrick, your host and President and CEO of Prevent Blindness Texas.
Heather Patrick:We are super excited about our guest today. She has a very interesting story to tell and a lot about patient advocacy and the importance of why using our voice moves things forward. Prevent Blindness Texas is an organization, a social impact organization focused on making sure everybody that needs access to eye health and vision care gets it across the state. Last year, we served over 61,000 people. 9,000 individuals received financial services from us, and we educated over 120,000.
Heather Patrick:We have teams and volunteers all over the state serving from children to adults. And we are super excited for this conversation. So let me tell you a little bit about Christine. She's the founder and CEO and executive director of the TED Community Organization, a global nonprofit dedicated to supporting those living with thyroid eye disease. An accidental leader, which I love that, we're going to talk about that, Christine stepped into advocacy by simply trying to help fellow patients navigate the isolating and often overwhelming thyroid eye disease journey.
Heather Patrick:Today, she leads an organization that unites patients, physicians, advocacy groups, and industry partners worldwide to foster education, support, and connection. So Christine, tell us a little bit about you.
Christine Gustafson:Oh, thank you. And thank you, Heather. Thanks for being here and for your awesome work. Your reach is long, and it's very exciting, you know, when you think about eyesight, you know, to have that kind of impact on something so important. So, yes, my name is Christine Gustafson, and I am an accidental leader for the TED community organization.
Christine Gustafson:And, there's other parts to me too. I'm an athlete. I swim the mile every day. I bicycle. I love being active.
Christine Gustafson:I live in Monterey. And if you've been to Monterey, then you completely understand this because being outdoors is such a joy. I also have a design agency. I design websites, and I do marketing. That was my life before I entered this nonprofit space, which was not intended.
Christine Gustafson:But I work mostly with hospitality, boutique ins, bed and breakfast ins, restaurants, usually all tourism related businesses. And I help them build ideas that will come to, you know, part of this conversation. But I'm entrepreneurial. I've always been an entrepreneur.
Christine Gustafson:I've always worked with entrepreneurs, and we're very used to taking no more than an idea and building it into something that helps others. So that's a little bit about me.
Heather Patrick:I love that, and that is very true, Especially I think in the nonprofit sector, there is this component of the entrepreneurial spirit. And I think you have to have it to be able to survive and really thrive and grow. But I love that. So why does serving the community matter so much to you?
Christine Gustafson:Well, I, you know, I grew to know why. When I was first just trying to help somebody who had thyroid eye disease, I myself have thyroid eye disease, and I had had it for ten years at that point. I had never met another person that had thyroid eye disease. It's a rare disease. And to just give a tiny bit about it is that it affects your eyes.
Christine Gustafson:It is autoimmune, and it attacks the tissues around and behind a person's eyes. And one of the things that can happen is it makes a lot of swelling behind your eyes, and then there it's like a cone behind your eyes, and then there's no more room because it fills up with all the swollen tissues and muscles. And the only place for our eyes to go is out. And so what happens when you have thyroid eye disease is your eyes actually push out of their sockets. They become red because they're being attacked and because they're exposed.
Christine Gustafson:And then there's, like, big, puffy, swelling eyes that are red pushed out. And as you can imagine, the people around us tend to be concerned, and little children become frightened. And so it's not unusual for children to hide behind their parents when they see someone who has thyroid eye disease. On the other side of it, it's pretty devastating. As an individual with thyroid eye disease.
Christine Gustafson:So to go through the journey alone, seeking medical help, which there has been at that time, there was not a lot of help for thyroid eye disease. So I simply was trying to help somebody that I had recently met in one of the support groups who we need help for. And so I was asking someone who's in the nonprofit world. I just happened to know her. And I said, you know, I'm having trouble finding help for my friend, Fran.
Christine Gustafson:And she said, well, it's because there's no dedicated nonprofit for thyroid eye disease. So I've already told you I'm not from that world. So I said, oh, does that matter? Is that important? And she said, yes, very.
Christine Gustafson:And when she said that, oh, Heather, I know that this has happened to you before. I got this big nod from the universe. And it's the kind of thing where you just think, oh, no. Don't pick on me. I have a very busy life.
Christine Gustafson:I have a very, very busy life. I don't know that space. And, I mean, I probably had, like, five five excuses, but, I mean, I didn't verbalize them. I just you know, I felt the nod. And so and and I'm sure, I mean, whether you've had that for you know, you meet the person of your life and they have red hair and you picture they'd always have brown hair and, you know, they're short.
Christine Gustafson:You want them to be tall. And you go, what's going on here? You know? But you you know that you're just being kind of funneled into something that is not exactly your choice. And so, anyway so I yeah.
Christine Gustafson:That that's really, you know, where it it started is I was just trying to help somebody. And and what I discovered is that it was richly rewarding trying to help other people actually find their own agency. So let me let me stop there because I can just go on.
Heather Patrick:Well, we're going to talk more about that. I mean, I think that is one of the most important roles I think nonprofits can play. Certainly those that are focused on an area like this is really helping people use their voice to find each other, to find support, but also to move changes forward. So take us back to that moment when you were diagnosed or what led up to being diagnosed with thyroid eye disease? And then what was that like after the initial diagnosis for you?
Heather Patrick:What changed kind of immediately and then long term for you as you walked through this journey?
Christine Gustafson:So when I was diagnosed, I was a really easy case because I had normally with thyroid eye disease, it comes with Grave disease. They don't always appear at the same time. In some cases, the Grave's comes first and then the thyroid eye disease comes even two, three years later. But for me, they both came at the same time. And so I had all the symptoms of Graves' disease, the racing heart, shaky, a lot of anxiety.
Christine Gustafson:The doctor said, do you have anxiety? I go, oh my god. I have no idea. It's like, just feel terrified all the time. And just you know?
Christine Gustafson:So they did. They ran and already my eyes were swollen. And I thought, what's wrong with my eyes? And I thought when I was opening and it was actually I thought it was closing. Anyway, one was opening.
Christine Gustafson:So one of the things that thyroid eye disease does is it causes eyelid retraction. So it's not only pushing your eyes out, but it the muscle here, it, like, pulls back. And so it opens your eyes. It seems kind of cruel, you know, because you're thinking, look, I'm already having a lot of trouble. You know, why?
Christine Gustafson:Why is this happening now? So the yeah. So I had I had every symptom. So when they ran the blood test for Graves' disease and then the autoimmunity and they just said it's off the charts, The endocrinologist said, this is the highest numbers I've seen. But I swam that morning and I rode my bike to her office and she didn't think they were my numbers.
Christine Gustafson:So she made me retest everything. She goes, no, this isn't you. I go, it's me. She says, no, no. It can't be you.
Christine Gustafson:She said, you would never you would never be in your condition with these numbers. And and it was me. And it's just, you know, I'm just really healthy. But for some reason, this kind of entered my life. And what changed after that was, you know, I it became difficult to navigate day to day.
Christine Gustafson:And it wasn't like a lot of people get double vision because the swelling, it throws the balance of your eyes off. And so that could be one of the first ways they know they have TED, thyroid eye disease TED is what we call it TED. So but I didn't have double vision. But navigating daily life was mostly psychosocial because when little kids would see me and start to cry, it would just break my heart. I wasn't trying to scare them.
Christine Gustafson:You know, I just simply walked into a room. And then, of course, I have a business. And so to go see my clients, you know, and they try to be really polite, but like, what's wrong with your eyes? And so it was very apparent. My eyes at the end were almost sitting on my cheeks.
Christine Gustafson:They were pushed so far out. And so that part of it, you know, my swim goggles, I had to keep getting bigger and bigger goggles because they my eyes were hitting the edge of them. Now, the way, I hadn't never met anybody that had thyroid eye disease. So I was navigating this. You know, I have a little cat, sweet tea, and my husband.
Christine Gustafson:But other than that, I didn't really have any support around me. And the doctors at that time didn't know a lot. They just called it Graves' ophthalmology and said, you just have to kind of wait. And then it just runs its course for two to three years. And then once it settles down, possibly we can do surgery to fix your appearance.
Christine Gustafson:And so that was that was the best they could do at that time. So yeah. So then it just became how do I navigate every day? And I'm I'm a fighter, as you can probably tell. And I didn't want to be sidelined.
Christine Gustafson:I thought, boy, I came from really rough beginnings and I had worked really hard to have a good life. And I didn't want to let go because I was building and I was building a really beautiful life for myself. And I didn't want to now have to sit on the sidelines and watch life go by because this had happened. I thought, no, I'm not doing that. I'm going to carry on with my life the best that I can.
Christine Gustafson:And I just felt like I'm going to get through to the other side. So and here you are. Yeah. Yeah. And here I am. Yeah.
Heather Patrick:So you do call yourself an accidental leader, but really you're not. You just said you're a fighter, right? You're not going to sit on the sidelines. But talk about how that journey into advocacy, what does it look like for you? So you recognize there's no support network, you help a friend, and you go from that to a global organization that is bringing people together on a regular basis, talking and pushing for change.
Heather Patrick:So how did you feel and what drove you into this larger calling? Because not everybody says, okay, I'm to make this a global movement. And so that's a big step. So talk about that calling into advocacy.
Christine Gustafson:So what happened is once, you know, was suggested about this nonprofit, probably suggested by the universe. Yeah. And it's got to be someone to blame for this. And and so I I started asking questions. Mhmm.
Christine Gustafson:And so since I'm a website designer, I look for a URL. You know, what would our website address be? And I was fortunate because there's you know, the TED Talks people have everything that to do with TED. And so, you know, they don't wanna be stepping on their toes for sure. And and then at that time, there was a medication being developed by a pharmaceutical company called Horizon, and they were doing a lot of promotion.
Christine Gustafson:And they had everything Ted related locked up, you know, because they had all the pharma bucks behind it. So I thought, well, don't step on their toes either. So, anyway, little me.
Heather Patrick:A lot of dancing in the beginning, wasn't it?
Christine Gustafson:Yeah. Little me. So what so I thought, well, I just love to have techcommunity.org. That would be very great. But what's the likelihood?
Christine Gustafson:And I looked it up and there it was. And I thought, oh, my gosh, that's such a perfect website. So I put up a survey on the website and then, you know, at techcommunity.org. That's all it was, was just a survey. And it was just asking, do you think that a nonprofit is needed?
Christine Gustafson:And if there was a nonprofit, what do you think it should have? Support groups? Should it have one on one connection? Should it have videos? You know, like, so I just asked all these questions.
Christine Gustafson:Well, they answered it yes. And they answered yes. Yes. Yes. We'd like to have all these things.
Christine Gustafson:And I thought, you guys are really a tough crowd because now it's like you're creating a lot of work for me. And so it was it was evident. I and I did go to the the first call I made really was to Nancy Patterson, who is the she started the Graves' Disease and Thyroid Foundation. And so she had been there almost thirty years. And so they had Ted under their umbrella, again, not wanting to step on any toes, but also hoping she had it covered.
Christine Gustafson:Right? So that's like, okay, universe. Look at that. Nancy's doing it. You know?
Christine Gustafson:I don't wanna be stepping on her toes. I'm gonna go back to my life. But no. I so I called her. I said, hey, Nancy.
Christine Gustafson:Someone told me there needs to be a nonprofit for for TED. I said, you guys have that covered, right? Like, well. And she said, no, it needs its own nonprofit. Gosh.
Christine Gustafson:I wouldn't ask. So anyway. Okay. So it does. So she said, honey, I think you should do it.
Christine Gustafson:She said, I'll really support you in that. I really think you should do it. And so she said, we just can't cover it well enough, and it really needs its own voice. So, anyway, that's that's really where it started. And so all I just tried to do, I didn't try to build a global community.
Christine Gustafson:All I tried to do was help people in the way they wanted to be helped. Mhmm. And so I just I'm a good listener, and I could hear I could hear the need. I could see the need. And I started talking to people by phone.
Christine Gustafson:You know, I you I just it it grew to be this, you know, just completely out of con not it's not out of control, but it's it's far beyond what, you know, I really thought. And see, in marketing, like, when you have an idea and you build the idea out, you have, like, what I consider spokes. So you have your your center hub in the middle, which is your idea, and then you have your spokes. And those are all your lines of communication out to the the outer wheel, which are the people that you're trying to reach. And so I I built out those spokes.
Christine Gustafson:And that is that's where marketing comes in because you build out your lines of communication. And the more lines of communication I built, the more people came. And then yeah. So that's that's how it grew. And they there's no borders on TED.
Christine Gustafson:It's just like there's no borders on the Internet. So what I was doing was going across the world, and peep that's how people were finding us. Oh, I found you on Google is most often what they would say. I was looking for help for Ted, and I I found you on Google, and I'm so grateful. And then I connect people.
Christine Gustafson:They'll tell me about themselves. Oh, do you want to meet somebody like yourself? Oh, yeah. I go, okay, I'm going to connect you with somebody. Changes their life.
Heather Patrick:Yeah. Yeah. That's all it is. Right? It is the connection.
Heather Patrick:It is I feel like in this business, in all businesses, but it's about the people. It's about that connection. And I think that is what is so critical about what we do. It gives people a voice and a connection to build that support network that we all need. Whatever our issue is, we all need that connection and that kind of support to walk through it.
Heather Patrick:So what's been the biggest challenge? Know, so the universe calls you to do this. You step into it. You know, what have been some of the challenges along the way and how did you work through that?
Christine Gustafson:So when you have a a nonprofit, so that's a learning curve. Mhmm. So you can you can have an idea. So you build this castle in the air, but you've got to put you have to put a foundation underneath it, and that's the nonprofit. And so building a nonprofit was a a huge learning curve.
Christine Gustafson:And so, fortunately, I I asked a a woman who an attorney who is very familiar with small nonprofits and how to, you know, how to set that up. And so we work together to build the the infrastructure beneath it, you know, get the board of directors, your bylaws, all all the different legal things that you need for the nonprofit. And because we were small, they were able to move it forward really quickly. Like, if you're if you're big, I think it's probably more complex. But but we were little, and so they this it kinda moved through the the legalities.
Christine Gustafson:And then, you know, we got on to the other side of that, and then we had that foundation to build on. And then there's a lot of, you know, I know we'll talk a little bit about collaboration, but the people around me have been incredible from the very beginning. So prevent blindness. Jeff Todd is your CEO for your national prevent blindness, as you well know. He's probably feels like a big brother to all of us, and he's not not related to age, but he is he's quite an incredible person.
Christine Gustafson:I was introduced to Jeff early on. And so he has been a wonderful mentor. And other people in this organization, Kira, There's a woman named Sherry who used to run the Ohio.
Heather Patrick:Yep.
Christine Gustafson:And I got stuck at some point in the nonprofit process and couldn't see the way out. And Jeff just called me. He just said, hey. I heard you're having trouble. You know how he is like that?
Christine Gustafson:It's like, did the universe tell you that? I mean, how did you know? And I said, yeah. I'm having trouble. He goes, hey.
Christine Gustafson:I'm gonna connect you with Sherry, and then Sherry can help you get out of trouble. Okay. That'd be great. And then Sherry called me. She goes, okay.
Christine Gustafson:That's a hot mess. She said, but I can get you out of that. Okay. Great. And so that's the kind of help that, you know, all along the way because she had experience and Jeff has experience.
Christine Gustafson:It's like you have experience. So you I mean, I'm sure that you come into situations where you can mentor someone. Now that's a different experience, right, Heather, than
Heather Patrick:Yeah.
Christine Gustafson:Than running the nonprofit is you have a chance like, what's that like for you to mentor someone? I'm turning turning this on you.
Heather Patrick:I mean, for me, that's part of actually today I had a call earlier about really building leadership. And I think I mean, I've been doing this a long time. I've been in the nonprofit world for over twenty years. But when I look back over my career, part of the reason I have been successful is because I had great women who pulled me aside, who helped me think through what I wanted to accomplish, who said, I think if you learn this or focus on this, you can go here and I want to help you do that. And so I think mentoring in any sector I think you're in is critically important.
Heather Patrick:I think if we have great lessons learned, we should share those out to help others be successful. I think in the vision space and certainly, I was in the cancer space for a long time, collaboration is what moves missions forward. This is a huge issue and you can't solve it alone. And I think really understanding how to leverage talent and expertise and leadership and coming together and building movements together is what creates change. And so for me, I think it's critically important to mentor others and just share what you've learned and help them hopefully avoid some pitfalls.
Heather Patrick:But also just I think more than anything, it's just It was so good for me to To know people were in my corner, that they wanted me to be successful and that I could go to them and problem solve. And that was critically important and it has been. And I still have mentors now. I just think it's an important part of the leadership process.
Christine Gustafson:That's beautiful. Well, they put wind beneath your wings. They do.
Heather Patrick:They do.
Christine Gustafson:Yeah. And it's just it is a very you know, in the TED community are like, a tagline is never walk alone. Mhmm. Is that because it's TED is such a lonely autoimmune and because it's rare, it's very often people it it's associated with loneliness, depression, suicidal ideation. And this idea of, you know, as as you described it with the collaboration, it it does something more than just move an idea forward is it changes you internally, is it makes you much stronger.
Christine Gustafson:And I was telling a woman yesterday who's going in for a doctor appointment and she's really frightened. I said, oh, don't worry. We'll all be with you. I said, you've got the entire community with you walking into that office. And that, you know, that kind of internal change where you're not alone is so rewarding.
Christine Gustafson:We had a woman, she's 81, I believe, and she's had double vision because of TED. And she, you know, said, well, you get strabismus surgery. Clear that up. Oh, no. I'm too old for too old.
Christine Gustafson:She said, and it's not that bad. I could just wear a patch over my eye and I can kind of get around even though I sort of trip on things. We go, you can get strabismus surgery and clear that up. Well, she did it. And she went on her husband's dream vacation, and they went there off and on this boat and on this river and did all kinds of very cool things.
Christine Gustafson:And she said I never would have been able to do that with the double vision because I just couldn't all the uneven surfaces. And you just see her light up. It's like, why is 81 too old? You know? It's like you could you could do that.
Christine Gustafson:Well, I'm not saying that we're pushing her into it. I'm just saying that we just opened that door and showed her the possibility. So for me, to the TED experience was for that ten years, I was like in this dark hallway. And I was kind of like feeling my way along the walls and just thinking, know there's got to be a light under one of these doors. And it was a long time, and I just kept going.
Christine Gustafson:And then when that light, when I saw that, like, I was telling the TED community, I said, when I opened that door, I said, that's where I found all of you. I said, that's that's what we need to do is we need to keep going until we find that light under the door because it's there. That's, you know, that's the most important thing. It's there. And so once you know that, don't stop.
Christine Gustafson:Mhmm. And so I think that is really an important message that don't walk alone. You don't you don't need to. And and keep going towards the answer because there is an answer. Like, for me, I had seven surgeries that took to put my eyes back where they belong, and they don't bulge out anymore.
Christine Gustafson:I don't have the swelling anymore. The Graves' disease is gone for now. It's been gone nine years, but these things can come back. I'm pretty vigilant. So I we call it Ned.
Christine Gustafson:That's a whole another story. We go from Ted to Ned. I'll stop there. Not get myself in trouble.
Heather Patrick:So what has surprised you along the way? You get called to do this, you step into it, you're building this incredible support network. The data shows across the board, regardless of what the disease is, having that support network changes health outcomes. So you're building this incredible support network. What has surprised you along the way?
Christine Gustafson:So I think the neatest thing, and I'm sure that you can relate to this, Heather, is that just your little self could do something, and you can move a needle.
Heather Patrick:Yeah.
Christine Gustafson:And you just think, wow. Look what I did. So I listened to this Steve Jobs interview in time, you know, the founder of the Mhmm. Mhmm. Our iPhone, which we all have, most of us.
Christine Gustafson:And he said the greatest discovery of his life is that when he pushed out into the universe, something happened.
Heather Patrick:Mhmm.
Christine Gustafson:And that he could see his own agency. It's like I could almost picture him, you know, kinda like with his hand in this, you know, almost like you can just see the see the effect, just the energy, his energy going out into the universe. And and so for me that I could use my own agency, that I could do things that would change other people's lives is really the most wonderful thing. Just like the story I just told you about the woman with double vision is you think, wow. Now she can go about her life, however much she has another ten years or more, twenty years.
Christine Gustafson:But she she'll get to enjoy it at a much higher level. And so in the in the TED community, I mean, agency is a big word for us. And so we look at it more like, of course, it happened to us, and we are victims of TED. But what if we change that narrative to a hero's journey? You know, what if we what if we tell ourselves a different story?
Christine Gustafson:And see, when we tell ourselves a different story, we'll take different actions. And when we take different actions, good things happen. And so that is at the basis of that. And so I've I've seen that over and over and over again, and it's very exciting to see when the lights come on. I don't know if you saw the Barbie movie, but there is a scene in the Barbie movie where they're waking the women up.
Christine Gustafson:And, you know, like when they wake the women up and then they go, oh, you know, it's like, I just entered this whole new world. Like, was in this I was in this other world thinking that that was true. And then all of a sudden, you're in this world where you think, oh, I have agency. I can do something about that. I can actually improve my life.
Christine Gustafson:I can have a better experience, even though I have TED. And so that's why we say, you know, like, hey, come with us. We're going to Ned. What's Ned? I'd say it's no evidence of disease.
Christine Gustafson:They go, has anybody been there? Not really. Let's just see if it's there. Let's find out. I mean, I'm probably in Nedland.
Christine Gustafson:Gene's probably in Nedland. But, you know, it's like it's let's find out for you what does that look like. And one woman said the other day she said what Ned is for me is not having to think about my eyes all the time. That's her Ned.
Heather Patrick:Yeah. I love that. I love using our agency. Yeah. Tell a little bit about exactly as a global organization now, what does the TED community do?
Heather Patrick:Over the last several years, talk about projects you've done or things that you're really excited about and give the audience a sense of what the organization is doing.
Christine Gustafson:Yeah. So we really actually haven't been around several years. So we are really new. And the idea was conceived of 02/22/2022. And then there was a period of the study and then the building.
Christine Gustafson:So last year was our first year to actually have our programs in place. And so, yeah, the the global part of it is we we have support groups Mhmm. And they are global. We we get asked to do a lot of studies, so we're very active in that where there's a great interest in Ted right now in thyroid eye disease by science, by medicine, by the pharmaceutical companies. And so we participate.
Christine Gustafson:We even even had people come to our house and take our blood, you know, so we not just not just surveys, but the the community itself is very responsive to that. This last year, early in the year, I was meeting with someone, and they said, you know, there really should be a conference, like a virtual conference for TED. I said, okay. Yeah. That's a great idea.
Christine Gustafson:You know, we could do that the next maybe next year or the year after when we're older. And they said, well, we think it should be this year. And so I could really feel like they're pressuring me. Like, what? I was like, come on.
Christine Gustafson:You're not the universe. You know, you're just someone from a supporting industry. And so they go, no. Because, you know, someone else might do it, and we don't we think you should do it. So I'm thinking, okay.
Christine Gustafson:Well, they got some kind of inside information, and they're trying to push me into this. And I just always say yes, and I just don't wanna do it and because we're too young. And so, anyway but I lost. And so I go, okay. And they go, look.
Christine Gustafson:You just hire a company to do this conference and just tell them kinda, you know, what you want, and they'll do it. And I thought, that's not us. It's like we're organic. We're a bunch of patients. We're very active.
Christine Gustafson:I have a whole group I call the TED builders, and we build things. We build programs. We do very innovative things. And I thought, that's not us to just hire some company and say, just put on this conference. You know, it's going to look like is some kind of corporate produced entity that's not even relatable.
Christine Gustafson:You know, you're just gonna have somebody up there with, you know, their stack of slides telling you about TED. And so I said, oh, no. So, anyway, start down this road and just I'll go very short on it is we just had the conference last week, and there were 40 people involved in putting that together. And they're mostly TED patients facilitate the TED patients all facilitated. We did every night of TED Awareness Week.
Christine Gustafson:We had different topics and we had medical councils came on, talked about the science, the medicines, telling your story, you know, that matter, how you talk to your doctor, quality of life. And does it matter if you take vitamin D? Know, it doesn't matter if you if you eat a steak or or salmon. Is there some kind of difference in inflammation? And, you know, does your lifestyle affect TAD?
Christine Gustafson:It actually turns out it does. So tell us what we need to do. And so we and then we talked to the people who including prevent blindness, like what services are out there for us. Anyway, so we did like this weeklong conference. It was all came from us, and it was very successful.
Christine Gustafson:And it was global, virtual global. And it was a ton of work to do it, but it but it was really us. And so so we did that. I'm not talking to that guy again, though, because I want no more ideas. Like, keep your ideas to yourself.
Christine Gustafson:That's a lot of work.
Heather Patrick:It's great. Let's talk about, so you have a business, you have a nonprofit, you have your own health, and you're also an advocate. So talk about how you balance some of that. I mean, I know we always talk about leadership, what's the balance? And for me, I always say there really isn't I just one day is focused on one thing and the next day is focused on something else.
Heather Patrick:I just know where I need to focus. But you have these big things happening. So talk a little bit about how you focus your day on what's happening or how has launching this nonprofit impacted your life?
Christine Gustafson:Yeah. So it has definitely added responsibility to my life. So there there's certain things that are nonnegotiable to me, and being active is one of them. So I I don't not swim because it's a busy day. I always swim. And I don't not bike to go somewhere because I could get there faster in a car. Because usually where I buy bicycle too, if it's the market to pick something up or whatever and going along the Monterey Bay. Yeah. Like yesterday when I was riding, oh my god, it was so beautiful.
Christine Gustafson:And this is about eyesight. The sun was starting to set. I was going out by 17 mile drive, which if you know that's by Pebble Beach.
Heather Patrick:Mhmm.
Christine Gustafson:And I'm going along on my bike, and we've had storms. And so it's extra beautiful. And people are stopping in their cars. The guy in the FedEx truck, he stops right in the middle of the lane, just stops. I mean, there's people behind him.
Christine Gustafson:He's got his camera out the window. It's like no one told anybody about this sunset that was gonna happen, but everybody saw it. Everybody saw it. Everybody stopped. And you just it's like you had to because it was just so beautiful.
Christine Gustafson:And you think about eyesight, why you want to just protect your eyesight? Because the joy that we were all experience was coming through our eyes is to, you know, be able to see something just that beautiful. So for me, like, if I just stayed in my office and I got one more thing done, but I never saw that sunset, then it would kill off a part of me. And the part of me that got killed off is that creative part that I need to be able to do my work. And so I need solitude.
Christine Gustafson:I need I need these quiet times that are just in when I swim the mile, I do kick turns, so I just go back and forth. People say, oh god, you're in the zone, and I'm in the zone. I just anyway, I need the solitude. It's one of the most important self care things I do. And and, of course, my nutrition and sleep.
Christine Gustafson:So all the things that the self care things is I those I I build my life around those things. So those are the nonnegotiables. And then if something doesn't fit there, you know, like, into that kind of template or my little yeah. Like, my little template, then I have to just kinda work with it. Like, I don't know.
Christine Gustafson:Like, I wanna get that accomplished, but I'm not gonna hurt myself to do it. So that's that's really how I do it is I don't I don't say, oh, I ran out of time now. I can't go swimming, you know, because I don't I wouldn't do that nonnegotiable.
Heather Patrick:I love that. So you have clear nonnegotiables. You've defined those, and then everything works around that. That. I love that.
Christine Gustafson:Yea
Heather Patrick:So when you think about globally, as you've had people come from all different backgrounds, all different cultures, Is there any kind of pushback or resistance depending on where they are in the world? Or do they understand or deal with TED differently in different parts of the world?
Christine Gustafson:So it is different because they have fewer opportunities to get the help they need. Mhmm. And then in some cases, there is like, there's a prejudice against the way people look.
Heather Patrick:Mhmm.
Christine Gustafson:So so in some cultures, they actually hide the family member that has TED because of the shame. And then in other cultures, I wasn't familiar with it, but I've been learning from the people in that area, a region in Africa where they actually ostracized people for looking different, you know, like having a different different look. Mhmm. So I'm I'm always learning. They're teaching me, you know, like, what it's like and then how can we how can we best help them.
Christine Gustafson:And so we we also have the ability to mentor people in areas so that they can become an ambassador of sorts, like a TED ambassador, and they can build a community in their area so we can give them the resources to do that. I that's an important I think that's an important you know, like, you you're Texas, but you you know, Texas is big. So you you may have you may have pockets of individuals that you can support and empower so that they can create communities. So that is you know, I think that's important. Does that happen for you at times where you you know, because you've got to cover a lot of ground.
Christine Gustafson:You can't just do that from one office.
Heather Patrick:Yeah. Approach is to find people in communities that we can train, that become ambassadors. Really, it's I mean, if we want to be sustainable and if we want the movement to really have impact, yeah, we have to find different voices in the communities, champions in each community. Because we only have a staff of nine, but even if we had a staff of 50, for an organization that serves a whole state like Texas, which we often kid is like a small country. But it is so diverse across the state.
Heather Patrick:And so it really does take champions in those communities to move eye health forward and to demand sometimes investment in eye health in their community. We help do that. We help build communities, help them understand why eye health is so important, why investment in eye health and preventative care is so important. And I think it And it is community by community.
Christine Gustafson:That must be really rewarding for you to see just because you're because you're growing something.
Heather Patrick:Yeah.
Christine Gustafson:And you're growing something that is just what I said about the watching that sunset. Mhmm. You know, it's very impactful that you you know, I I heard something I was reading through your website, and it says something about fifty percent of sight loss is preventable. Is that right?
Heather Patrick:Over fifty percent of vision loss is preventable.
Christine Gustafson:I just wanted to, you know, kind of if you could interject that in this because that's, you know, of course, what we're about too is, you know, use your agency. Right? So how what is that? Why is that over fifty percent? So can I ask you that?
Christine Gustafson:Like what is that?
Heather Patrick:Absolutely. Well, I think for one, I mean, you think about diabetes and vision loss, right? Diabetic retinopathy is the leading cause of vision loss in working adults. So just take that population alone. Being able to understand why it's critical to get your eyes checked if you're pre diabetic or diabetic and what that means and really understanding how the disease can impact your vision.
Heather Patrick:And the thing about vision, as you know, for some things, it's unlike most of your body parts. Once it's gone, it's gone. I mean, and so that's not the case for every eye disease, but many of them. And so I think the idea for me is when I hear that something is preventable, for the most part, can solve a lot of this. And even if it's not totally preventable, early, there is no disease that I know of where we don't say early intervention makes a huge difference.
Heather Patrick:So even if you have it, early intervention is key to being able to manage the disease and prevent further vision loss. So I think it's really When you cut it by everything else, understanding how important your vision is to your overall health and being able to emphasize prevention. Prevention is key. Early detection is key. Early treatment is key to being able to protect your vision.
Christine Gustafson:Part of just education, getting that education out there, because you think about how valuable eyesight is and just to be able to you know? So we we at the TED community are our next initiative, which is where I was going when this guy interfered and came up with this conference idea, is we're creating a quality of life program and the quality of life program as so it's a little bit so prevent blindness has an aspect program, and it's it is a certain number of what I would call modules, you know, where you you go, you get together online, and you learn things together.
Christine Gustafson:And it it really makes a big difference in how you're able to view your own eye health, eye health of others, how you can how you can tell your story, how you can make a difference even in Washington, DC. So I I took the aspect classes from Julie. She's a great teacher, great mentor.
Christine Gustafson:And, anyway, so for the quality of life, it's a little bit that same model, but it's looking at the things that affect you when you have an autoimmune, your nutrition, your movement, you know, like like, do you know going for a walk is anti inflammatory? Your your sleep hygiene, very important, the your socialization. And so when you have TED, you withdraw.
Christine Gustafson:But in fact, withdrawing and loneliness, I heard your speaker who was on your podcast earlier, just a brilliant woman, and she talked about loneliness, the epidemic, loneliness epidemic, and and that certainly affects people that have TED. But but inflammation is actually like loneliness promotes inflammation.
Christine Gustafson:And so you really do yourself a favor to be with a friend and start laughing, because when you do, you're going to you lower your inflammation. And so there's there are some pretty key things that we've learned from our medical council and our own experience that we're building into this quality of life program that will give TED patients the support and the education that they would need and the community to do it with if they wanted to to make some lifestyle changes that could support their journey to healing.
Christine Gustafson:And so we wanna provide that platform for them. And so the TED builders and myself, this group of incredible TED patients, we are that's what we're building. And then it will be free and available once we run our pilot program for other TED patients to participate in.
Christine Gustafson:And it's just like when Steve Jobs pushed out into the universe and he felt he could make a dent, I think we could make a pretty significant dent in the world of TED if people had the tools that they needed. And right now, it's it's not there's it's not available. It's a completely unmet need. And so the other part of that is it'll be scalable. So when you have something like that and we'll you know, like our physicians and scientists that support us will certainly study us and what kind of effects we get.
Christine Gustafson:But if if it does turn out as we're expecting it will, just common sense tells you that. Right?
Heather Patrick:Yeah.
Christine Gustafson:So it's scalable to any autoimmune or any you know, that you can use your own agency that no one's coming to save you. You know, it's like, sorry, but it's you, you know, like you're the one. You have the agency. You can make these choices. We'll help you.
Christine Gustafson:But once you realize no one's coming to save you, you just think, oh, really? I've been waiting a long time. Oh, well, the wait's over. I guess they're not coming. You know.
Heather Patrick:I think you've already made a big dent. I think your agency has created a huge ripple effect, and it's exciting to see this organization come to life and be a network for TED patients all over the world. And so thank you for what you're doing. Okay, so quickly for our audience, how can they get in touch with you? What's your website?
Heather Patrick:Yeah. So what's your website? How do they contact you if they want more information? Yeah.
Christine Gustafson:That's the main thing. Go to tedcommunity.org and then everything that you need is there, all the free programs. We have art programs, just very cool art programs. They're free, and then we even give stipends for art supplies and, yeah, support groups and just the, you know, you can sign up for our newsletter so you can stay up to date with what we're doing. And the hello@TedCommunity.org.
Christine Gustafson:That's me. So all that email comes to me. They told me they said, get someone else to answer the email. It's like, you have better things to do. But, you know, that's how I learn about the community because I I read the emails and I go, oh my god.
Christine Gustafson:The guy gets up every morning, looks in the mirror and says, I hate you. And I I wrote back to him. I said, you know, that's not going to help you. You gotta change that story because, you know, I wouldn't know that if somebody else is checking the email. Yeah.
Christine Gustafson:I wouldn't know that guy's doing that. And I can you can't be doing that. Gonna connect you to somebody who's going to, you know, help you get a better story. And so anyway, yeah, that's the best way is tedcommunity.org and the contact information is there and yeah, everything that you need to the saint may saver, rewriting our stories and, changing our lives.
Heather Patrick:I love that. Yeah, we and I truly believe this, and this is one of the things we talk about, that life changes one conversation at a time. And you never know where that conversation is going to take you. You never know what's going to be dropped in your lap. You never know the opportunity there is through that one conversation to have ripple effects.
Heather Patrick:But thank you so much, Christine, for what you are doing, for being that leader, for being that voice. You certainly are making a difference. So thank you. And thanks for being on the show today and sharing about what you're doing and the TED community. I think it's critical.
Christine Gustafson:Well, right back at you, Heather. I mean, yeah, your work is incredible. I've loved learning about what you're doing and watching your videos and just, yeah, just someone to, like, really look up to.
Heather Patrick:Oh, thank you. Thank you. I love this space and I love the people in the space. And I feel like we really have the opportunity to make that difference, to use our agency to create and make it a better place.
Christine Gustafson:Thank you.
Heather Patrick:So as always, Prevent Blindness Sex is always looking for people to get involved, there are all different ways to do that. Through our website, you can reach us, call our office. We have tons of resources on our website. We are connected to great partners like Christine, but we are always happy to talk to people and tell them about what we're doing and how they can join us to move this mission forward. And as always, follow us at I Spirey, and we always end with, We'd love to know what your vision is.
Heather Patrick:Thanks and have a great day.