Diabetics Doing Mission & Advocacy with Dr. Nicole Johnson

[00:00:07] Rob Howe: Welcome to the Diabetics Doing Things podcast. We've been telling the amazing stories of type 1 diabetics all across the world since 2015, and we have over a thousand years of living with T1D on the podcast. The interviews range from incredible feats to everyday victories, and we celebrate them all just the same. Thanks for listening, and if you want to get involved even further, just send me an email at rob at diabeticsdoingthings.com. Hello listeners, Rob Howe here. In a very rare one-on-one conversation between me and you, I'm very excited to introduce this special episode of Diabetics Doing Things. I'm going to be introducing you to Dr. Nicole Johnson, who serves as JDRF's Director of Mission and has become a great friend of mine in diabetes over the past year. If you've never had a chance to meet Nicole, I'd thoroughly encourage you to get to the next JDRF Type 1 Nation event where she's speaking. That's where I met her, and I've had the pleasure of bumping into her at other diabetes events as well. but she's awesome her story is super empowering and i think she can at least from my perspective she can bring a lot of things into focus over the last 25 to 30 years of diabetes whereas i really only had the last 15. she and i sat down at her conference students with diabetes earlier this summer in florida to talk a little bit about her life with diabetes which includes being crowned miss america in 1999 her work with jdrf and what an exciting time it is to live with t1d because of the community. I want to say big thanks to Nicole and her team by making this possible and for hosting me at Students with Diabetes, and I hope you all enjoy this great chat with Dr. Nicole Johnson. And also a disclaimer, this episode has some background noise, as we were trying something new and recorded it at the event during teardown and set up in a big ballroom. So bear with me, and I really hope you enjoy this episode. Hello and welcome back to another episode of Diabetics Doing Things. We are the rare episode that we are live and on location at the Students with Diabetes Conference. My very special guest today is Dr. Nicole Johnson.

[00:02:30] Nicole Johnson: I'm glad to be here. Thanks, Rob. Super excited that you had me here at the conference and that we were able to talk.

[00:02:38] Rob Howe: And yeah, I'm really excited to dig in and kind of learn a little bit more about you and all the awesome stuff that you're doing for JDRF and otherwise.

[00:02:46] Nicole Johnson: I'm delighted to talk about it and you know my main purpose in this diabetes world in this diabetes space is to encourage people to live their dream and to pursue goals and not to have any kind of preconceived notions about what they can and cannot do because anything's possible as long as we're moving forward and that's the whole purpose of this conference and the whole purpose of the

[00:03:09] Rob Howe: work that I do at JDRF as well. Well and I think you sort of embody that mission as well. And, you know, I know that's your purpose. And we've talked a lot about purpose and a lot about mission and a lot about taking those steps here at the conference. For you, let's kind of start at the beginning with diabetes. I've heard your story sort of at, you know, events as part of your, you know, keynote speeches, but kind of take us through, you know, what day one with diabetes was like and even leading up to that was like for you.

[00:03:37] Nicole Johnson: Yeah, well, I was 19 years old and a sophomore in college when I was eventually diagnosed with type 1. As we look back, you know, you reflect in hindsight's 20-20, but at the time I had no idea how to piece and string things together. But I had been very unwell for a long time, and I say that because I don't know exactly what was causing the situation of me being unwell. It could have been a virus. It could have been a whole array of other factors, but the end result was type 1. So I was misdiagnosed several times prior to eventually learning that I had type 1. So I kept on living life and doing things, which, you know, is good, but it turned out to be relatively dangerous for me. So at the end of the day, I was on a stage performing. That was what I was interested in and most excited about at that time in my life. I was in my first Miss America preliminary competition. I passed out on stage and was very, very sick. Shouldn't have been there, but I was so determined. I was going to see it through. I was going to see what could be, right? And basically, I also knew that there was a prize at the end. I needed scholarship money because I was in college and I was paying for college on my own. But unfortunately, I was sick and I didn't win that competition. They named me as a runner up and I passed out and they took me to the emergency room.

[00:05:11] Rob Howe: So that was your prize, getting to go to the hospital?

[00:05:13] Nicole Johnson: Yeah. You know, which a fascinating perspective is that I probably was given the greatest gift I could have ever been given that day. going to the hospital, having them look into what was going on with me. It had been speculated that I had the flu. It had been speculated that I had appendicitis, you know, all kinds of things, but none of those were true. So I was admitted to the hospital, given insulin. My blood sugar was over 500 when I was diagnosed. And the next day when I was a little more cogent, a little more able to understand what was going on because I'd received the miracle drug of insulin, right? The healthcare team came in and started to talk to me about my future. And that's when things

[00:06:00] Rob Howe: really started to hit me and really in many ways fall apart. And I think a lot of us experience, you know, those first few moments with diabetes, you know, talking with a diabetes educator or just with a physician. And, you know, sometimes it's not the prettiest picture that they paint for you. Is that sort of what you experienced?

[00:06:19] Nicole Johnson: That's exactly what happened to me. You know, I'll never forget it. And it replays in my mind, you know, like a movie scene so often. You know, the health care team came in. There were several members on the team. You know, and I remember I'm in the white hospital room, the white bed, the silver rails down the side, you know, laying down. And they started to talk to me about what is your life, you know. And they asked me what I was involved in. So my eyes brightened up. I said, oh, I'm in college. I'm excited to be a college student. no woman in my family has finished college to this point I'm going to be the first one and they immediately said you're going to have to drop out you have type 1 diabetes you're not going to be smart enough to finish blood sugar changes are going to affect your brain and waves of devastation as you can imagine like rushing over you happened and and so I processed it for a minute and of course right on the heels of that they said hey what do you want to be and I said oh, well, I want to be a journalist. I'm studying journalism and communications. I want to tell stories. I want to write. Immediately, the healthcare team says, no, you cannot be a journalist. Journalists don't eat lunch at the same time every day. Now remember, this is 25 years ago. And so the prescriptive therapy for dealing with type 1 at that time was you eat breakfast at seven. We eat lunch at 12. You eat dinner at five to six. And don't, don't miss a meal if you want to live. Yeah, don't mess with it because you're on injections and that is that, right? So I've been told I'm not going to be smart. I've been told I cannot have a meaningful career. And they say to me, oh, hey, but were you in a pageant last night? And I go, yeah. And if you wouldn't have helped me last week when I was here, I would have won. I was a runner up and I'm this sick. And they start laughing, you know, and I was totally serious. So as you can tell, I'm still in this moment not believing that my life is going to be different yet they go you can't ever be in a competition again you can't handle a stressful environment you should not do it and all of a sudden I'm crushed again right okay I'm not smart I'm not going to be able to have a career I cannot be in a stressful environment what can I do nothing to that's what it sounded like to me so the team leaves the room my parents leave the room and I'm sit there and I start thinking about it and that's when the darkness entered my mind and my heart and my soul and I'm it's just starting to process that you are gonna be nothing

[00:08:55] Rob Howe: that was my interpretation well and I think I think for them to lead with that like oh by the way now that you know that you're not gonna be smart what do you want to do with your life now that you know that this is what's out there

[00:09:06] Nicole Johnson: for you. And it sounds completely insane. I mean, but it legitimately happened like that. In fact, it actually got worse. They came back into the hospital room and they said, so we need to talk about one more thing. And I'm like, what's the one more thing? Yeah. What could be waiting behind this door? Yeah. And my parents are crying. Um, they say, Hey, you know, we need to talk about family planning. And I was like, wait, we, we can't have a sex talk right now. This is not, not okay and they go you're you're never going to be able to have children oh like final blow right and um and they left and that's I left the hospital with that information with no no chance for family no chance for to be smart no chance to have the career that you wanted no chance to pursue what you were currently pursuing and succeeding at yeah so I dropped out of college I moved back home into my bedroom at my mom and dad's house. I got a job as a secretary in a bank. I mean, because I was raised, my family grew up. We believe what the doctors tell you, right? And so I continued that therapy for a couple of months until I went, I can't take this anymore. I'm going to have to try something.

[00:10:23] Rob Howe: And this is, I think, a critical, I really want to focus on this because now you are JDS Director of Mission. and you know I think a lot of us have been in those positions as T1Ds and we listen to the doctor that's I think that's a that's a common thing I think even for myself I don't question the doctor as my first response because I feel like they have my best interest at heart and they why would they lie to me or why would they tell me something that they are not 100% sure of I think that's just maybe human nature exactly so I mean obviously you continued on I mean you

[00:10:54] Nicole Johnson: are Miss America. Yeah. When, you know, how did you and your family make that decision? We're like, hey, we're going to push back against this a bit. Well, you know, unfortunately we, we didn't have the opportunity to learn about advocacy and self-advocacy at that moment. So it happened organically for us. My hope is that it happens more directly for people today, you know, as a result of this podcast, knowing that you have a voice, you have an opportunity to challenge what our perceptions of others, right? No one can ever tell you you can't do something. So for me, I was slowly withering away as a human being, not physically, but just my mental health, my emotional health, all of it. I was disappearing because I was spiraling in depression and just all of this negativity because I felt like I had no prospect. So I started to honestly claw my way out of the hole. And my way of clawing out was, I'm going to try one thing. And so I enrolled back in college and finished the classes that I dropped out of, right? And I enrolled back into another semester. And all of a sudden, I'm like, well, wow, okay, I can do this. And I have type 1

[00:12:09] Rob Howe: diabetes. And was it just like a bad discovery of like, oh, this isn't as different as I would

[00:12:14] Nicole Johnson: have thought? Is that, hey, you know, I think I have this management down, I can go continue to add things to my plate? You know, frankly, it was just deciding to take a step and move forward. I mean, that was the powerful aha thing. And so I did it slowly first with education. And then I thought, okay, they said I can't enter another pageant. Let me just do it. Let me, I mean, I didn't win the last time. Might as well just try, right? I enter, I win. That didn't mean I went to Miss America. I mean, I did this enter and win local things for about four or five years. And it slowly built my confidence along the way that, okay, I have diabetes. Let me figure out how to communicate about it. Let me figure out how to take care of myself. Let me figure out how

[00:12:59] Rob Howe: to goal set. And it made me into who I am today and to what I do. Well, and I think that's an important aspect to pick out of this, right? You jumped into a local competition where, you know, It's the same, I assume, the same type of criteria, same type of judging criteria, where you're going to have the same demands on you physically and emotionally, right? Stakes might not be as high, but you're going into it saying, okay, if I can do this, I can probably do something else. So maybe taking something that's a bigger lofty goal and kind of breaking it down.

[00:13:30] Nicole Johnson: Yeah, I mean, if we seek to achieve the big, big kahuna, right? We're setting ourselves up for failure. I believe in setting a small, measurable, achievable goal, right? Something that you can figure out the next steps to, accomplish it, and set another small goal. Because all kinds of small goals piled up on top of each other, you reach the big thing. We learn that here at this conference from various speakers talking about climbing Mount Everest, running marathons, running, you know, doing massive competitive events. It all starts with those first couple of steps and you just add them on top of each other. And at the accomplishment awaits at the end. And that was true for me, too. The thing that makes right now so exciting for people that have diabetes is that there's an openness about living with a disease or living with whatever it might be. And there are a lot of people willing to talk about their failures, their journey, their struggles. 25 years ago when I was diagnosed, it took me years until I met someone else with type 1. And that contributed to some of the challenges that I had early on. I count the day that I really connected with my first peer who was like me, similar in age, trying to accomplish things professionally. that was the day my life turned around.

[00:15:00] Rob Howe: And how did you meet that person?

[00:15:03] Nicole Johnson: Through JDRF, actually. I went on an advocacy visit in Washington, D.C., and I met another woman that was close to my age and saw her doing incredible things, and all of a sudden the light bulb just went off for me. It sounds really silly, and it's really obvious and should have happened before, but it was in that moment I went, okay, she's doing it. I can do what I need to do. And we became close friends and remain so until now.

[00:15:34] Rob Howe: Well, and I think, you know, you said it seems silly, but I think sometimes the most impactful, profound decisions that are more life-changing, we heard from Sebastian, you know, last night here at the conference. We heard from other, you know, athletes and, you know, incredible speakers talking about, you know, sometimes they're the most obvious things in the world, but you making the decision is what's impactful.

[00:15:57] Nicole Johnson: It's a moment like when your heart is open to it, right? So we have to get to places as individually where we are willing to hear and see the gifts that the community can give to us. And I always like to talk about how friends are medicine. So in isolation, we do worse just as human beings. But then with a disease like type 1, our diabetes outcomes are worse if we are isolated. Social support is magic. It leads to better A1Cs, better general diabetes care, a different outlook on life, feeling more connected. And that doesn't mean you have to be a social butterfly.

[00:16:42] Rob Howe: Correct, yeah.

[00:16:43] Nicole Johnson: It just means you have to have an openness and a willingness, and you have to work at it often. And I'll tell you, I'm an introvert, so I work hard at this on a daily basis. to connect with people and make sure that you're not living in a bubble. And all of a sudden, really wonderful things result.

[00:17:01] Rob Howe: Well, I want to hold on to that introvert comment for a brief moment, but I also want to reinforce what you talked about with the community and letting them in from a clinical perspective. Just as myself, my own example, very similar to you, it was probably 10 years into my journey with type 1 before I let myself open to other people with type 1. Not because I didn't want to, not because I felt like it wasn't for me, but I was just doing other things. And I felt like I didn't want to be a burden to anyone. And the minute I started to share my story and become more open with the community, I've had better A1C, so my A1C was about 7.1 when I started diabetics doing things, and since then it hasn't been over 6.3. And my life hasn't changed from my day-to-day. The only thing that's different is that I'm more open, and I have a community of people willing to share that.

[00:17:50] Nicole Johnson: And you're motivated through it, right? And, you know, it's not that I think that I have to have a good A1C for people to like me or a good A1C to set an example. I honestly make the same food decisions and I count the carbs the same and I test the same amount of times, but there's just something about not having to do it all myself. You know, a lot of times if you're able to find a joyfulness in your existence, in your place in the world, regardless of the hand that you've been dealt, right, it can contribute to your overall health as well and I often like to think a lot about and talk a lot about in presentations gratitude because I think that goes hand in hand with joyfulness so I find it incredibly encouraging to reflect on you know my personal diabetes journey and the changes that I've seen in opportunities for therapy care technology you need drugs philosophy all of that in 25 years so that builds my enduring gratefulness and and I then take that attitude and approach to my world right to my child to my family to my job to my place in the diabetes community and then it all pays dividends back in the end to me as a human and as a person with type 1 and I think that's what we're talking about so people listening can't you know using these these small little interventions that really you can control yourself taking a step every day figuring out how to find just one thing to be joyful about in the midst of challenge and then finding ways to to express gratitude whether it's gratitude that you express just in and of yourself you know maybe it's through faith and spirituality maybe it's to others maybe it's to the medical

[00:19:43] Rob Howe: system all of these things help us well and I think to gratitude as a as a currency almost like they I think I heard I went on this very big kind of stoicism and meditation and mindfulness journey in the last year and a half or so and the idea that gratitude with when gratitude exists no other emotion can take priority over that so fear anger hurt depression all those things go away when you are grateful for those things. And then, you know, another thing that I have to actively remind myself to do is where are my opportunities to bring the joy? Where are, if I look at my day, and where can I insert joy here? Instantly, that situation is changed for the better,

[00:20:28] Nicole Johnson: even if it wasn't bad to begin with. We're speaking the same language, my friend. I'm all about this. I love this, yeah. And I think,

[00:20:37] Rob Howe: I do want to go back a little bit to your comment about being an introvert. Because I think as Miss America, you wouldn't assume on the surface that doesn't seem like an introverted type activity. How did you have to overcome those internal battles to go and win and make that dream a reality?

[00:20:55] Nicole Johnson: Oh my gosh. So it's really hard. Actually, social environments are really hard for me. And hopefully this is freeing to somebody.

[00:21:06] Rob Howe: I think a lot of people relate to that.

[00:21:07] Nicole Johnson: Yeah, I have to work hard at it. And I can be in social environments for a period of time, but then I have to retreat and kind of take care of myself and decompress, and then I can enter again. So it's funny. My significant other, he feeds off of social environments. I mean, he just could not get enough, right? I think it's obvious when you meet him. He's so ebullient would be a word I would use. It's a riot. And it frees me a little bit sometimes because I need to pull back to just build my reserve and then I can go and do it again. That's why people who you often see as performers or who excel at being on the stage, they actually are quiet people. Because they can pour it all into the performance or the speech or whatever they're doing in a public way. And then they can retreat back, fill up, and pour it out again. And so that's what I learned to do. There's a little bit of a benefit and a deficit to that through the Miss America experience. But it's been interesting to learn that about myself over the years. And probably one of the greatest gifts that I've given to myself is not beating myself up for it anymore. Because I used to let social anxiety bring fear to me. and now I'm able to know my boundaries and set my boundaries and be able to move in and out of situations where I don't feel overwhelmed. That helps my diabetes also. So that could sound completely weird, but to others it's completely real.

[00:22:46] Rob Howe: Well, I think for me, again, we're just the synchronicity in our conversation and the way we're looking at things. The only thing I came into 2018 with was banish fear 2018. Like it's not allowed because it is a real thing. I think when you're presenting yourself out to someone, I think the instant human reaction is to judge yourself for whatever it is and to hate it. And for many performers and artists, I think your first reaction is, I hate what I just did and here are the reasons why it's terrible. And getting those out I think is so key to accomplishing whatever it is you're trying to work for.

[00:23:20] Nicole Johnson: And, you know, actually all of these little stories that we're talking about all relate back to why I do all the things that I do in the young adult community. I love young adults because when I see them, I reflect back on being 19 and being diagnosed and feeling fearful, worried, entering into a depression, questioning why do I exist and should I exist? you know contemplating all kinds of negative thoughts and then pulling myself out of the hole so I look at faces of young people and see that right and I see the potential like if we can just encourage love them teach them some small skills to deal with challenge build resilience we're building a population and it's going to give to others in incredible ways and that's what gets me excited. And so that's what makes me excited about what I'm able to do now at JDRF.

[00:24:22] Rob Howe: And so I want to, I built up a line of three things from your diagnosis story, right? The doctors told you that you're not going to be smart, that you're, you know, you can't do pageants, that you're, that's not an option anymore, and that you can't be a journalist, can't do what you want to do, can't chase you through him. Right. And that you're not going to have a family. So I guess that's four things, but, you know, so now you're, you know, I would characterize some of what you do is like marketing, communication, journalism, almost, right, as the director of mission. Yeah. And we're here at Students with Diabetes, and it's full of young people who are

[00:24:54] Nicole Johnson: around the same age that you are, you're diagnosed. Why are they so important to the future of T1D? What is, because there's, I think, at least in my experience, right, we do a great job at JDRF with the young kids in the newly diagnosed families. Like, that is our bread and butter. We just do an awesome job caring for them and giving them everything they need. for a million different reasons. It's harder for us to catch people who get diagnosed after the age of 15 on into adults. And then sometimes there's not as many things, but I think with YLC and things like students with diabetes,

[00:25:28] Rob Howe: we're giving young people a chance to get attached to the community.

[00:25:33] Nicole Johnson: Why is that so important to you? Well, first and foremost, building community is important for the people in the community. So, I mean, outside of any organization, we first must exist to help each other. And so that's my number one purpose and goal, right? You know, I believe I have diabetes for a reason. And that reason is to pour into other people and let them know they're not alone, that they have potential, and that great things can happen, right? So that is the why. And then from the why, we move into the what and the how is how I like to think it through. And so at JDRF, we're in the middle of a really interesting evolution. So I joined the JDRF mission team working with Dr. Aaron Kowalski, who is such a guru and such an admired figure.

[00:26:29] Rob Howe: Such a cool guy. I got to meet him last, I guess, this spring.

[00:26:33] Nicole Johnson: Oh, gosh. Yeah. Such a cool guy. I mean, you can't really get much cooler than him. But so we work together. And what I focus on is really thinking about the lived experience and the journey of life with diabetes. And I'm focused on thinking about adults with type 1 for JDRF. No one's ever done that in particular for the organization before. That's why I say we're at this really interesting evolution point. And so we have made a strategic decision to wrap our arms around the young adult community in 2018. You know what? It's going to be other buckets of the adult community in years to come, but right now, this is the one we're wrapping our arms around. And I am so excited to tell you that actually, the Students with Diabetes organization, it started in my research lab almost nine years ago when I was working in the academic arena. It transitions 100% to JDRF as of tomorrow. and we will drop the name students with diabetes. And we're actually asking people at this event and we'd love to know from the people on your podcast if they want to send in ideas. It's easy to find me. What do you want us to call the work that we do at JDRF for young adults? Because that's what we're wrestling with now. But we've got this multifaceted approach. And so in this young adult bucket, we're going to be doing national conference events like the one that we're at right now across the country. We'll do a couple each year. They may move around. We're still deciding all of that. We're going to have a national internship program where JDRF collects young adults with type 1 and places them in paid positions for summer internships. So those are obviously college and graduate school students. It's not internships at JDRF per se. It's everywhere in diabetes, which is pretty awesome. We're partnering with other important diabetes organizations like College Diabetes Network, but also with professional organizations like the American College Health Association. And we are infusing places with information about type 1 where there was not information. So for instance, our relationship with the American College Health Association, they have 800 colleges in their membership. We're getting information about diagnosing type 1 diabetes and how to treat type 1 diabetes to all of those 800 colleges. They don't have it right now. This is an awesome, awesome thing. And so this is all about wrapping your arms around a community, doing something really interesting. And then of course, the last thing that we're looking through, we're working through right now in the young adult bucket is the young leadership committee and councils that we have that operate all across the country. This is potential. This is talent, young talent, individuals that are excited and interested in how they might give back to the community. We're re-envisioning what does that look like and what is best for that age group and helping them move forward in ways that they build the skills necessary so when they get into middle and later adulthood they are the leaders and are paying it

[00:29:49] Rob Howe: forward then to the other next generations. I think I think my favorite thing about all of that you know from the you know putting the literature in the right hands for in the colleges in America to investing in at a young age I think they all have returns that are logarithmic like they continue to pile on and like the more we do at those levels they're going to extend and those concentric circles are going to expand and you know when we talk about advocacy you know doing one-on-one advocacy is super important and I'm so glad that we have so many people across the country and all of our JDRF chapters and otherwise educating people about type 1 diabetes but getting it at the source and putting it into those places where it has an opportunity for a macro level impact, I think is going to just change the way a lot of newly diagnosed experiences, you know, which helps people from day one when they're diagnosed and brought into the type 1 family.

[00:30:42] Nicole Johnson: Exactly. And if I foreshadow what's coming in the future, you know, just because I believe it's important to get excited, right? The next buckets in adulthood, we've got middle adulthood, we've got later adulthood. there are unique and specific needs in each kind of bucket. And so we're starting to explore and learn about those and responding to what the community tells us they want and need. And that's what's exciting about this moment in time.

[00:31:12] Rob Howe: It is, yeah. And, you know, I got to do my talk on the T1D Renaissance this time, and I think it just is really scratching the surface of what's possible from this great group of people.

[00:31:21] Nicole Johnson: Yeah.

[00:31:22] Rob Howe: All right, so Miss America, Yeah, you crushed that. You graduated from college.

[00:31:26] Nicole Johnson: Check that off. Yeah, good.

[00:31:27] Rob Howe: It's good for us to go back to all the nevers.

[00:31:29] Nicole Johnson: We got to.

[00:31:30] Rob Howe: Right. Because they set you up for failure.

[00:31:32] Nicole Johnson: They did.

[00:31:32] Rob Howe: And yet, here we are.

[00:31:33] Nicole Johnson: Right?

[00:31:34] Rob Howe: And so.

[00:31:34] Nicole Johnson: Here we are. Everything has happened.

[00:31:36] Rob Howe: And you've got your dream career.

[00:31:38] Nicole Johnson: Yes.

[00:31:38] Rob Howe: I knocked the words in your mouth, but this is it.

[00:31:40] Nicole Johnson: Well, you know, I mean, a lot of people don't. So, yeah, I got my PhD in public health and behavioral science. So there's the smart thing.

[00:31:48] Rob Howe: We got the smart thing.

[00:31:50] Nicole Johnson: I had a show on CNBC for five years called dLife. So I worked in journalism. I've worked in newsrooms. And now it's so exciting to bring research knowledge and communication journalistic experiences together at JDRF to serve the community. But I'll tell you the most important thing I do is I'm mom.

[00:32:10] Rob Howe: Yeah. And that's what I want to talk about because you checked that off the list too.

[00:32:14] Nicole Johnson: Yeah. I have a fantastic 12-year-old daughter who is going into seventh grade and who is healthy. She does not have type 1 diabetes, although, you know, if she winds up having type 1 diabetes, that's okay. We are going to face it as a team and head on, and she knows that nothing can beat her because she's had the beautiful example her entire life of the diabetes community. And I want people to know how powerful that is. So I have my child, since she was six weeks old, has gone to nearly every event that I've gone to, and the influence that it has had on her is astounding. So from a mother, she writes school essays on diabetes events that she's been to. She's done school projects on diabetes. She now is the student at school that if a young person is considering coming to her school with type 1, they have them shadow my daughter because my daughter will take care of them and love on them. I mean, what a gift to a child, right? To teach them to be compassionate and to care. And it, oh gosh, it just brings me to tears because I worried my, nearly all of my life as a parent that I would be a burden to my child. But what's turning out is that she has learned so much from this community that has adopted her and watched her grow up too that has made her into this unique tender caring intelligent young girl that who knows what she's going to do as an adult to turn around and give back to others so for the adults with type 1 give this to your children show them diabetes don't keep it from them and engage them and let them be a part of the process because they recognize the magic right

[00:34:08] Rob Howe: away and it influences them. Isn't that crazy? It's beautiful. What an awesome gift, right? I know,

[00:34:15] Nicole Johnson: I know. And you know, she, she talks about this conference because she saw this start with 20 people, um, eight years ago. And she's, she, uh, wrote a story for her school newspaper, um, last year and called it our mission field, you know, and that she's helped start this conference. And I said, yes, yes, you did. She was a four year old founder. You know, it's all good. Put it on the resume, baby.

[00:34:40] Rob Howe: Yeah, we'll take it.

[00:34:41] Nicole Johnson: Because she's smart.

[00:34:43] Rob Howe: Because her mom is smart.

[00:34:44] Nicole Johnson: She's smart, too.

[00:34:45] Rob Howe: She's going to go and accomplish all her dreams with that as well.

[00:34:47] Nicole Johnson: It's a unique thing that parents with adults who are parents with T1D, they go through a unique set of emotions. I mean, there is a profound fear that you wrestle with and a little bit of a sadness that you wrestle with, too, as you think about your child's lived experience watching mommy or daddy struggle and the kinds of things that our children are often required to do to help us um but at the end of the day the kids are doing great and they are absorbing those lessons and turning it into something

[00:35:27] Rob Howe: magical. That's so great. We are, we're coming up at Student Diabetes Conference. We have like the

[00:35:37] Nicole Johnson: big luau party. I know, you hear it in the background, by the way. Yeah, and I really

[00:35:42] Rob Howe: actually like that we're here live. That's very unique. Usually this is a very like quiet studio call. I think I like the energy. People having fun. It's good. It's a real thing. Like this is something that if you know you're in this age group you should do and I think you know now

[00:35:57] Nicole Johnson: I'm glad that there's going to be opportunity for people to do more across the country. Yes there are.

[00:36:01] Rob Howe: Because this could be a long way to come to Florida for some people and now bringing it out. You're

[00:36:05] Nicole Johnson: totally right. What an opportunity. In fact we have in our survey asking people you know where where do you want us to go? For us to make a decision to go to a place to bring this young adult conference we've got to feel like there's an audience there that would want to come and participate right and so we're thinking about there's there needs to be something on the west coast there needs to be something in the middle of the country and there needs to be something on the east coast and um now it's just a matter of figuring out how to do that uh but but we want to hear from folks you know what do you want to see happen um because we're in responding mode

[00:36:43] Rob Howe: and with that i think um you know for people who maybe don't have a survey what and you mentioned this earlier, you're easy to get a hold of. What's the best way for people to reach out and get in touch with you and your team and kind of get involved in it? Well, people are always

[00:37:01] Nicole Johnson: able to email me directly. I'm at JDRF. So it's njohnson at jdrf.org. So send me an email. I'm on Facebook. You can find me. I think it's Nicole Johnson Diabetes. I'm on Instagram, um, Nicole dot Johnson 99, I believe it is. Um, so, you know, uh, send me a note, uh, or a messenger or, you know, whatever it is. And, uh, I may not get to it right away, but I respond.

[00:37:33] Rob Howe: Rob and I have gone back and forth on Instagram for sure. It's a real thing.

[00:37:37] Nicole Johnson: But that's the way to, and I value people's ideas, suggestions, their input, because, you know, you go back to the why. The why is doing things that are meaningful for the community that are going to make a difference in their lives.

[00:37:54] Rob Howe: And that why, I think we've reinforced twice now, which I love. One thing I do ask every time, every time I have a guest on my podcast, I ask them the same question sort of as the wrap up. because I think it puts a nice bow on things. I'm sure I could think of a dozen different answers that you will probably come up with, but I want to try you on the question. So context is important, as it always is. So the context is you're in an airport.

[00:38:20] Nicole Johnson: Okay.

[00:38:21] Rob Howe: And they're about to close the door to your gate. And for whatever reason, like, you can't miss the flight. Like, something's on the other end that's, like, super important.

[00:38:29] Nicole Johnson: Yeah.

[00:38:29] Rob Howe: But you bump into somebody who has either been recently diagnosed

[00:38:33] Nicole Johnson: or is struggling with their life with type 1.

[00:38:35] Rob Howe: Oh, man. And so you have 30 seconds to tell them one thing.

[00:38:39] Nicole Johnson: What is it that you believe in your life? Wow, that is super hard, yes. You know what? The first thing I do is I put my arms around them and I hug them. And I tell them that I understand. I know it hurts. I know it's hard. But I also know that you can get to the other side. And that I believe in them. and that I'll walk with them through it. And I always offer people the opportunity to connect with me, interact, or let me help them connect with someone that's right for them in their community. But honestly, a hug really is probably the most important thing. The other thing that people with type 1 don't hear enough of that I try to always remember to tell people is that they are courageous and that I appreciate that about them because it takes a remarkable spirit to walk through this journey.

[00:39:45] Rob Howe: It does, and I think sometimes on a day-to-day basis, I try to reinforce with people, especially at conferences where I get to interact with people face-to-face, and they're more open about, hey, one-on-one conversation, they're open, like, I've been struggling, or my son or daughter has been struggling.

[00:40:01] Nicole Johnson: celebrating those tiny wins. I remember when we met in San Antonio a family came up to me and we were talking about those things and they said well you know sometimes the ambulance gets called and and that's a big day and I said you know what they don't come every day and days that they don't come you should celebrate that we didn't have to get out of bed with an ambulance waking up. Yeah. I don't know if we're as good at that like I think that's a daily reminder we have to continue to say hey you know what today was a day that we lived with diabetes and that we made it all the way through and that's great.

[00:40:31] Rob Howe: Absolutely.

[00:40:32] Nicole Johnson: But I have a friend that we often talk about humor is the salve to put on almost any wound. And she's been through her fair share of 911 calls. And she often says to me, I'm going to write a book about hot firemen in the bedroom. The number of EMTs that she's woken up to.

[00:40:58] Rob Howe: You know what they say, tragedy plus time equals comedy.

[00:41:02] Nicole Johnson: Exactly.

[00:41:02] Rob Howe: I love it.

[00:41:03] Nicole Johnson: So finding a way to laugh, oh, it's a beautiful thing.

[00:41:07] Rob Howe: Nicole, I do want to throw some gratitude your way for having me here at the conference. It's been lovely. For taking the time in the middle of this crazy busy day, right before this big luau with the grass bird and the flower.

[00:41:18] Nicole Johnson: I know, where there's a monsoon outside, by the way.

[00:41:21] Rob Howe: Monsoon outside. I just appreciate everything that you've done for me and getting us here and involved.

[00:41:29] Nicole Johnson: I'm really glad for it and grateful to have the opportunity. Thank you, Rob.

[00:41:32] Rob Howe: You're a rock star. So keep encouraging people. Please, please, please.

[00:41:36] Nicole Johnson: Well, this is my favorite thing. So we're going to keep on doing it. And hopefully that'll take us, you know, a whole lot of places and continue to have these awesome conversations with great, great stories of people living in the type 1 world.

[00:41:48] Rob Howe: So thanks so much. I believe in you, my friend.

[00:41:50] Nicole Johnson: Back at you. being this celebrity.