Advocacy Series S1E4: The App Built From a Father's Love: Nabu AI's Origin Story

Episode Summary:

What happens when a brand strategist — someone who's built campaigns for Aerosmith, Lenny Kravitz, Samsung, and Levi's — suddenly finds himself standing in front of a wall of machines keeping his newborn daughter alive? For Steve Lewis, it became the beginning of the most important work of his life.

In this episode of the Narcolepsy Navigators Advocacy Series, hosts Kerly and Iris sit down with Steve Lewis, founder of Nabu AI and director of Emotions.org, to talk about how a single sentence from his daughter Bowie — "Dad, I want to go to my own appointments" — sparked a mission to put patients back in control of their own health story.

What We Cover:

• How Steve's career in entertainment and brand strategy came to a screeching halt when his daughter Bowie was born with complex, lifelong health challenges
• The painful reality of transitioning from pediatric to adult care — and why retelling your medical story over and over is a form of trauma
• What Nabu AI actually is (hint: it's not a tracker — it's an advocate) and how it works as a single source of truth for your entire health journey
• The "Three Columns" framework Steve uses to understand human, social, and cultural needs in healthcare
• Why Steve believes the patient is the biggest unsolved problem in health — and how to fix it with the right information at the right time
• The safety, encryption, and compliance features built into Nabu AI, including background checks for support workers
• What the UAE's "Al Nor Center" gets right that most of us don't — referring to disabled people as "determined people"
• Why invisible and rare conditions are superpowers — and how society loses when it excludes difference from the conversation
• What gives Steve hope: the passionate frontline workers he keeps meeting all over the world

About Steve Lewis: Steve Lewis is a seasoned brand strategist and product designer with 30+ years across music, film, fashion, and food. In 2007, the birth of his daughter Bowie changed everything. Now the founder of Nabu AI and Director of Emotions.org, Steve is on a mission to ensure patients are better informed, better supported, and achieve better outcomes. Find out more at [nabu.ai] (coming soon to iOS & Android).

Resources & Links Mentioned:

• 🌐 Narcolepsy Navigators Hub: www.napsforlife.com
• 💌 Share your story: narcolepsynavigators@gmail.com
• ❤️ Support the podcast: www.napsforlife.com
• 💬 Join the community: Narcolepsy Navigators Discord & Patreon

Quote of the Episode: "Your true calling is where your great gladness and the world's deepest needs meet." — Frederick Buchner, shared by Steve Lewis

Transcript

Steve Lewis Part 1
[00:00:00] Speaker 3: Welcome to the brand new advocacy series on the Narcolepsy Navigators podcast, where lived experience meets powerful storytelling, and every voice makes a difference. I'm your host Kelly. In this special series, we're shining a light on the changemakers advocates and the everyday heroes who are breaking the silence in their field.
[00:00:28] Speaker 3: Each episode will take you behind the scenes of what it really means to fight for awareness, equality, and understanding in healthcare, education, employment, and beyond. From patients and parents to professionals and politic shapers. We all hear how they're navigating systems, building communities, and driving change because when we speak up, things shift.
[00:00:48] Speaker 3: When we come together, we move mountains. Get ready to be inspired, informed, and empowered. This is advocacy in action. This is Narcolepsy Navigator's [00:01:00] podcast.
Welcome and Introductions 
[00:01:00] Kerly: Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, your host, and welcome to advocacy series. 
[00:01:06] iris: And I'm Iris, your co-host for today.
Meet Steve Lewis
[00:01:09] iris: So today we have Steve Lewis. He's a seasoned brand strategist and product designer with a 30 year track record that crosses music, film, fashion, and food.
[00:01:18] iris: Steve has been working with icons, including Andrea Elli, Aerosmith, and Lenny Kravitz and brands, including Samsung, Levi, and Cannon. In 2007, Steve's life took a profound turn when he became a dedicated father, carer and advocate for his daughter. Bowie.
[00:01:32] iris: This personal journey ignited a passion for creating positive impact and driving change within the disability community. Steve is the director of emotions org and impact brands driving profits from essential spending to essential mental health programs and suicide prevention. Steven is seasoned an entrepreneur with successful startups in food and technology from entertainment production to first responders at the transfer from pediatric to adult [00:02:00] care.
[00:02:00] iris: Bowie said that I want to go to my own appointments. This was the catalyst for Steve to create Nabu ai, an advocate for patients to be better informed, better supported, and have better outcomes. This is his story. 
[00:02:13] Kerly: Welcome Steve. Welcome Iris. , Steve, how has your week been so far?
[00:02:17] steve: Wow. It's been a pretty big week. So we met, on the other side of the world and I traveled leaving Amsterdam back to Australia, where I live, and I spent some time with my girls and jumped right back into. I work on this side of the world whilst my body was still on that side of the world.
[00:02:35] steve: And so , it's hard talking to somebody who's got narcolepsy about being tired and and randomly falling asleep. But yes, that's how I feel this week. And, but I'm super excited and I'm excited to be here. It was fantastic meeting you at the health conference and the other.
[00:02:51] steve: Other patients in the ask the patients lounge, which I don't like the word patients, the other members of our community. I like to refer to [00:03:00] us as the left side of the ratio community. And 
[00:03:02] iris: that's unique. Yeah. And 
[00:03:03] steve: it was an inspiring, trip and I'm I'm excited to be here.
[00:03:07] steve: It's been a good week. Thank you. Thank 
[00:03:08] iris: you for coming. 
[00:03:08] Kerly: And jet lag is real. Embrace it. They say for every hour that you go, you travel, it takes one day to recover. So a day. Wow. We travel from Australia to England or from Australia to somewhere, in Europe or whatever.
[00:03:23] Kerly: That's 26 hours. Yeah. So it should take you almost a month for your body to climatize back 
[00:03:28] steve: To properly recover. Yeah. I won't be going to Australia. No, we should come. We've got all kinds of beautiful things here. We're spiders. 
[00:03:35] iris: Yes. 
[00:03:35] steve: But I've been nicked by a good spider and hospitalized from that, but,
[00:03:40] iris: oh my God.
[00:03:40] iris: Yeah. 
[00:03:40] steve: It's a lot of beautiful things here too. 
[00:03:42] iris: That's an incentive for me to go thank. I know. That's the worst thing to say to she. Spiders, we get big spiders. You 
[00:03:47] steve: get spiders the size of your hand. They're great. Oh, okay. 
[00:03:50] iris: Yeah. That's beautiful. But they eat 
[00:03:52] steve: mosquitoes. Make beautiful. I like mosquitoes.
[00:03:54] steve: There's one at my apartment and it does a beautiful web and it's there almost every morning. You have to be careful. You [00:04:00] don't walk through it. And we've given her a name. Babe. What was her name? What was the spider's name? Eloise. You named a 
[00:04:05] iris: spider. Oh my god. Spider. We already had Charlotte people.
[00:04:08] iris: Spiders don't deserve names. 
[00:04:09] steve: We had a name, 
[00:04:10] iris: we had a name. Your girlfriend allows this. Okay. That's a very good girlfriend because she's Australian. 
[00:04:14] steve: She'd be upset with me if I hurt the spotter. Ozzie. Oh my. They love their wildlife. 
[00:04:18] iris: No you guys are tough. Yeah. Got fit skin. 
[00:04:20] steve: Something like that.
Hosts Weekly Check In
[00:04:21] Kerly: So Iris, how's your week been so far?
[00:04:23] iris: Apart from not remembering what day we're at, hold on. Today's always Wednesday. Okay, we're halfway through already. It's gone fast. Let's say that feels like time's just getting faster every single week, every day just goes faster and I, you have 24 hours and yet end up doing nothing. Sometimes I just don't understand. Maybe that's my narcolepsy, I dunno. 
[00:04:40] iris: No, definitely it's. I don't think 10 years ago it felt like time was moving so fast. I don't know what changed , in the climate or environment. I think we just have more information overload every day. 
[00:04:52] steve: I think you also got 10 years older, right?
[00:04:54] steve: Just had more to do and if you have free time, you're not bored, you just rest. [00:05:00] Whereas if you're younger, 
[00:05:01] Kerly: oh yeah, that's true. And you have 
[00:05:02] steve: free time, you're like, fill it. And when you get older, I wanna do nothing. Yeah. Ah, yeah. It doesn't feel like we 
[00:05:07] iris: can't wait till we turn 18, and then you turn 18 and you're like, no. 
[00:05:10] steve: Yeah, exactly. 
[00:05:11] iris: How is your week Kerly? 
[00:05:12] Kerly: What happened this week? I can't remember. 
[00:05:14] Kerly: I Sure I did something productive. Oh, yes. I went to the hospital to see the hand surgeon and he told me that my carpal tunnel on the right hand is not as bad as the left hand was.
[00:05:26] Kerly: So it doesn't need surgery. The left hand had surgery and the right hand doesn't need it. So he's going to book for me to have an injection instead, which is, so that's good. The bad news, that's very good. And he thinks I've got some type of neuropathy. So that's not good. But at least I don't have to have surgery, so that's good.
[00:05:41] steve: Yeah. Minimally invasive. Invasive as possible. 
[00:05:43] iris: I have no idea. Neuropathy, that, that's like a load of things.
[00:05:46] Kerly: Yeah, I just wanna get rid of the numbness in my hands and my feet and it's just like really crazy. I literally almost hurt myself this week when I, my foot went numb and I didn't realize, and then I moved forward off the sofa and I almost flat fell flat on my face. 'cause it just [00:06:00] gave way. I didn't realize it was like I didn't have a leg anymore.
[00:06:02] steve: So is it that the pins and needles that you feel, is that the issue? Yeah. 
[00:06:05] Kerly: It starts with pins and needle, but that goes completely numb. I said someone could stab you and you wouldn't feel it. So yeah. It's, yeah, that's really tricky. Yeah. 
[00:06:12] iris: Scary. That's tricky. So Steve. Tell us about you. We'd like to hear your story a little bit about Oh 
[00:06:16] Kerly: yeah.
[00:06:16] Kerly: Steve, could you tell us, introduce yourself to the audience, your name, where you're from, your age, if you feel comfortable. And my 
[00:06:23] steve: age. Oh, I don't know if I feel comfortable. 
[00:06:26] Kerly: That's okay. It's laughing. Take that, 
[00:06:27] steve: gimme a secret. 
[00:06:28] Kerly: Yeah. . Your name, where you're residing. Yeah.
[00:06:31] Kerly: Who you are and what you do. 
[00:06:33] steve: Okay. Hi. Hi everyone. Hello audience. It's a pleasure to be here. My name is Steve Lewis. I'm the founder of a company called Nabu ai, and I met Kerly at the HLTH conference in Amsterdam this year, which was fantastic. I am born in Toronto, Canada, but I currently reside in Sydney, Australia, where I am right now.
[00:06:53] steve: I started my journey in the health space creating a product for my daughter to use. [00:07:00] She said to me one day, dad, I want to go to my own appointments. And I thought that's an interesting problem to solve. She should be able to go to her own appointments. She should know how to communicate and how to be communicated with, and then how to be a good patient.
[00:07:14] steve: What are all the things that you need to do, and. On the heels of that, we created Nabu and it just started to spiral. I was about to say out of control, but it's actually very much in control where you think about your health journey and you think about all of the places that you need to repurpose that information.
[00:07:31] steve: And you need to, continually tell your story, but you don't want to, you don't wanna be identified as a patient. And I said that earlier, I don't like the word patient. Because you're constantly being told you are a patient, something's wrong with you, you're not well, and that's not the case.
[00:07:46] steve: It's just an untypical situation that you're dealing with. You're part of a community and every time you enter a situation and you have to identify yourself as that, it's a negative experience. And so I thought. We can do away with that. A little bit of [00:08:00] technology so that you don't have to continually explain yourself.
[00:08:02] steve: Will go a long way. Yes. And so that's where we're at. It's been a real pleasure to travel around. I was in the uk. I got to go to London Tech Week. And visit with some folks, who have developed some amazing technologies for the NHS. Then I went up to Manchester and I had never been to Manchester.
[00:08:19] steve: It was a first for me. That's lovely. And it was a sunny day and and they even said. It's like for two sunny days. Wow. You've been lucky. Yeah. I think you brought Australia 
[00:08:26] iris: Sun with you, you took it to Manchester because that's not normal. 
[00:08:29] steve: Their 
[00:08:29] iris: accents 
[00:08:30] steve: even changed when the sun came out. I'm told.
[00:08:32] steve: Everyone got really nice and pleasant. Oh no. Yeah.
[00:08:35] iris: They get less ghetto. 
[00:08:36] steve: It was great. And NHS had the Confed and I met some amazing people there. A lot of really passionate people working in the English health system and, then I went down to Amsterdam to health. So it was good. It was great to see some colleagues and friends. I had a question, 
Bowie Transition to Adult Care
[00:08:49] iris: just very intrigued because obviously you mentioned your daughter, but you didn't mention how old she was when she asked you that. 
[00:08:56] steve: So when she asked me that she was [00:09:00] 17. 17, yeah. 17. Yeah. So she's still young.
[00:09:02] steve: We're in the process of transitioning from pediatric care to adult care, and Bowie's been one of these young women who are, she's just. Constantly out in the world trying to do her own thing. She's not, she's got this attitude of, I'm gonna show you, i'm gonna get that job and I'm gonna do that work.
[00:09:19] steve: I love that. And I can lift it on my own. And, you probably witnessed this a lot in your own journeys, but the people who have the most to complain about, complain the least. And they just want to get out there. And that's her thing, right?
[00:09:31] steve: I missed a flight, and I was out in Western Australia, which is pretty far from everywhere. So I was out on a mine site and I missed my plane because of a power outage. And Bowie said to me, dad, I want to go to my own appointments. I was arranging a care, a support worker to take her to a pre-op appointment with a surgeon.
[00:09:49] steve: And she just said, dad, I wanna do it on my own. And I thought that's interesting. What a great problem to solve. And I got very lucky.
[00:09:55] iris: It's rare that people want to go alone, especially at that age. So she's definitely unique. 
[00:09:59] steve: She's [00:10:00] extremely unique. So Bowie's got quite a long journey.
[00:10:02] steve: Her journey started from birth. She was born with some damage from a viral infection in utero. She spent a long time in intensive care. And she's just been battling ever since. She's got lifelong challenges like many people living with ultra rare conditions.
[00:10:17] steve: There's not a lot known about what's going on for them. And so you just battle through and you get on with life. And she really did teach us that you can't be defined by what is considered a disability or a chronic illness. You just have to find your way to adapt. You have to find your community.
[00:10:36] steve: You have to find your abilities because they are superpowers. And I got to be the lucky person to help guide her on that way.
Lessons From Caregiving
[00:10:44] Kerly: Becoming a carer for your daughter, changed your life. What has been some of the most transformative lessons that you think she's taught you? Ooh. 
[00:10:52] steve: Yeah. I think every parent can say that they learn a lot from their kids. Yes. I had a bit of a unique one. I was in a [00:11:00] career that I absolutely loved.
[00:11:01] steve: I was living in Los Angeles and I was working with a pretty amazing group of celebrities when we were designing clothes for a big retail campaign. And Bowie was born. She was. Brought into this earth under difficult circumstances. And so you go from one day you are educated, successful, you're living the life that you are defining for yourself, and the next day you're standing in front of a wall of machines.
[00:11:27] steve: That's yeah, pumping. Into your child that you're having everything being moderate for you, and you don't understand anything, you don't recognize the room that you're in, you don't understand what's going on. None of the, none of what you're taught is what's happening for you and you're alone. It's a pretty, it's a pretty scary place.
[00:11:43] steve: You feel very disconnected, responsibility, a lot of responsibility, and you feel very disconnected from the world. For me, it was a real journey. It was a journey for healing in a lot of areas. But I think that the thing that I learned the most would be, you, you have to let the raw material out and then work with it rather [00:12:00] than judge your initial reactions. To take a deep breath and to allow somebody the process of learning and understanding and it's taken me a long time to get it and think in terms of acceptance, and I had to accept a situation.
[00:12:13] steve: I had to accept the new reality, and I didn't want to accept it. I had to teach somebody to accept. Circumstances, you have these young children and they're dealing with things that nobody should have to deal with, and there's no reason for them to have to deal with it.
[00:12:25] steve: And they see the world around them, and they see kids running and swimming and effortlessly doing stuff. Bowie's got a beautiful younger sister who can do everything effortlessly. She's popular, she's smart. She's great at sports. It doesn't necessarily put the effort in, but we watching all of that.
[00:12:42] steve: And that's hard to watch. Yeah. You have to teach them. And so that thing of not judging those reactions and letting somebody get that out and then helping them through conversation, shape the material that's been put on the table in front of them. And I felt like when I started to get [00:13:00] that and.
[00:13:00] steve: When I started to get it and understand it, it really helped me go through a bit of that healing journey of accepting what was going on and figuring out how to shape the, this piece of art that is this life that we live into. Something that I loved and made it beautiful, gave up on a lot to do it.
[00:13:18] iris: We did mention that you worked with quite a few, a completely different lifestyle, let's say a little bit more celebrity and luxurious, that many people will probably never get to know and to go from that such a different disparity to crazy world of, chronic illnesses maybe.
[00:13:32] iris: Do you think it kinda gave you a different sense of purpose in life as well? 
[00:13:36] steve: Oh, absolutely. It definitely opens your eyes up. You listen to people complain, and then you walk into a children's hospital and you see what's going on, and you spend time in an acute care scenario and real tragedy, it's blood and tears.
[00:13:48] steve: It's hardcore. It changed everything about me. You watch the news and war, right? People going into battle. I immediately think of nurses every day, every hour of every day, every minute of every hour of [00:14:00] every day. And they're doing that exact same thing. They're like soldiers.
[00:14:03] steve: They're getting paid to do a job that nobody else wants to do. They're walking into a situation that most people can't handle, death, destruction, and it's their job to sit there and keep hearts beating, right? To figure out a way to get in lines and to solve problems. That's. Other people's tragedy and it evened out my thinking in a lot of ways and not always for the best, right?
[00:14:26] steve: Like you get pretty numb to certain things and people come at you with a lot of drama and you sit there and you think. Whatever, but you gotta give, you gotta give your social network benefit of these things and look, and I would say geez, you're whining, walk up the hill and go read a book to a kid in the cancer unit and then come back our, all the time, our 
[00:14:44] iris: language.
[00:14:44] iris: We relate so much to that because we are from that world and I'm so glad that, you are not even somebody that's with the condition, for you to be able to see that and see how it changes your perspective on life. It's just, it's very interesting. 
From LA to Australia
[00:14:57] steve: Yeah, it was because it was all [00:15:00] consuming.
[00:15:00] steve: And, we lived in Los Angeles. We didn't have family in Los Angeles, so it was really different. That's how we ended up in Australia. Bowie's mom she wasn't born here, but her family is here, and we wanted to be around family. So we came back so the girls could have a life more connected to.
[00:15:15] steve: It was also, I couldn't do that work anymore. I couldn't do the travel. It was hard for people to relate to me with what we were going through as a family. And it was hard to take a break. And I think a lot of what went into designing Nabu was when people would say you need to learn to ask for help.
[00:15:32] steve: And I don't know what I'm doing. How can I ask for help? Or unless you are willing to sit with me for a few days. Get what this whole thing's all about. How can you help me? Or they say you need to take a break. You need to take a break. How do I take a break every hour, every 30 minutes, I have to do something?
[00:15:47] steve: And unless you're willing to do that. But people have this idea of health being, oh, you'll just turn to that page in the manual and you'll read the paragraph and it'll tell you what to do. Medicine is an art, not a science, or it's both, but [00:16:00] it's certainly much more art than it is science when you get into those rare conditions.
[00:16:04] steve: And it's too many people on the right side of the ratio dictating to us on the left side of the ratio. Yes. What life's all about and 
[00:16:11] Kerly: exactly agree, they've gotta 
[00:16:12] steve: stop. 
[00:16:13] Kerly: Yeah. 
What Is Nabu AI
[00:16:13] Kerly: So for those who don't know, are new, what is Nabu AI and how does it work? 
[00:16:19] steve: Nabu is the Mesopotamian god of wisdom and literacy who created writing.
[00:16:26] steve: And what I wanted was, I wanted Bowie to have the ability to walk into an office. Deliver her history, handle the admin, and take all of the notes from a meeting with her doctor without having to do any extra work and without having to struggle. And what nabu turned into, when we started to build it properly, was a single source of truth.
[00:16:52] steve: For your medical journey that didn't require anyone else's, subscription license [00:17:00] activity, your doctor has to do nothing different. That conversation or your occupational therapist or your family who are supporting you, and they can get all of your health information, your care plan, any way that they can support you, you can deliver that, that's in your control.
[00:17:17] steve: So much of our health information exists in different places. Be it the insurance company the pharmacist. The disability scheme that we're part of in our, whatever social setup you have in the country that you're in, the school and everyone's got this amazing technology that's being developed for them in order to handle that information.
[00:17:36] steve: However, none of it is in the patient's hand. What you get is an envelope in the mail, that gives you a letter. 
[00:17:44] steve: And you have to go and repurpose that information to the next place. Yes. The community program, the support worker. It's your responsibility. Exactly. And so for me it was about creating something that could.
[00:17:56] steve: Collect all of that information and then repurpose it [00:18:00] instantly everywhere you needed it. And it's been an interesting journey, right? You hear a lot of people talk about the complexity of health technology and the compliance and the security, and I always say, okay, did you run that same compliance and security on the post office?
[00:18:15] steve: Because the last side check that ain't secure. Mail's getting stolen and it's disappearing. That's my health information that's in the mail. So unless you've done that, you can't say that I need to do anything different. And legally we don't. Legally, we protect. You, your information is yours, and these are your notes.
[00:18:32] steve: This is exactly like your notebook, but it's it's searchable, it's dynamic. You can ask it questions and it can tell you what your providers need you to know. And the big mission became, okay what makes a great patient? What's the biggest problem in health? Because it's not the system, it's the patient.
[00:18:51] steve: I'm the biggest problem in health. I didn't do what I was supposed to do. I didn't take the medicine I was supposed to take. I didn't show up when they scheduled an appointment, and [00:19:00] I cost the hospital three, $400 sometimes more. Those are the biggest problems in health. And so if I could create something that reminded you, not when and where you needed to be somewhere, but why you needed to be there, why are you going to these places?
[00:19:12] steve: Why are you doing this stuff? Because that will make you a better patient and that will give you a better relationship with your provider. That was the mentality around creating something 
Why Patients Need Support
[00:19:21] iris: It's interesting you say that, 'cause what I got from the app like that, for me that is obviously somebody with narcolepsy that would be the most useful due to our symptoms like brain fog, automatic behavior.
[00:19:33] iris: It's that communication with your doctor that sometimes when you are under pressure. And you go to an appointment and you don't, you forget, you forget what you've been experiencing and what you know. Why did you even come here? Oh God what was I supposed to say to him? Yeah.
[00:19:47] iris: And it really does seem like that be like pivotal for all kinds of conditions. 
[00:19:52] steve: Yeah. A hundred percent. Stuff that like I could put my hand up and say, yeah, this happened two days ago and it was three weeks ago. Or a month [00:20:00] ago. Or it happened a month ago and I said it happened yesterday.
[00:20:03] steve: Like it, that, that thing of the what you think for absolute certain when you've written it down and you look back on it. It's pretty remarkable the conclusions our brain tells us. And I'm not saying that any of us are liars. Yeah. And I'm not saying we're being deceitful. 
[00:20:19] steve: We're tired. Just human, right? Yeah. We're afraid we're not acting. 
[00:20:22] steve: At 
[00:20:22] steve: our, at our best. And when we have information or when we get support from people, it's in various places. And currently, how many messengers do you have on your phone? 
[00:20:30] Kerly: Yeah. 
[00:20:30] steve: WhatsApp. Facebook, Instagram.
[00:20:32] steve: Text message. 
[00:20:33] steve: Signal, telegram. Wow. You guys, telegram got some funky ones on there. Yes. 
[00:20:36] Kerly: Yes. Signal from my friend in Australia who refuses to use WhatsApp,
[00:20:40] steve: there you go. How many email addresses do you have? So when people start sharing, see she's got one for, the dating apps. I'm sure you got special email address that you know.
[00:20:50] iris: You know what? Actually Gmail doesn't allow me to create anymore. 
[00:20:53] steve: Nice. See, there you go. That's a lot of, she's got Portugal, she's got the uk. There's all kinds of [00:21:00] things going on. Anyway, so you have all of this information and it's everywhere.
[00:21:04] steve: So when you go to your doctor and you know they've got a lot of people that they have to serve, and you have your 15, 20 minute slot and you're looking for information, and they're looking for information, then you're not talking. Yeah. And then it's about then we start talking about why can't we find these things and what was that dose history, when did that medicine stop?
[00:21:23] steve: And you're just spending all of your time looking for less meaningful things. And so to have all of that stuff in one place, and the challenge for us then becomes how do we innovate on that? How do we add to it? And the beauty of. 2025 technology is that everything is so scalable, so quickly.
[00:21:40] steve: So we've been able to build this in less than a year. 
[00:21:42] iris: Wow. 
[00:21:43] steve: And I'm so grateful. I'm so grateful and I'm very flattered by, the caliber of the people that have come to support this journey. Some incredible. Doctors a, a guy called Dr. Peter Steer. He was the chief executive of Great Ormond Street.
[00:21:58] steve: Children's hospital. Oh, wow. And [00:22:00] he's now in Melbourne, he's a neonatologist. And, I was telling him about my goals, about getting it to market in less than a year, and he was telling me about his goals of getting back into more dedicated children's health. He was at another hospital at the time in adult's hospital.
[00:22:14] steve: Yeah. And he's now. Back in children's health running Melbourne Children's Hospital and understands the problems that we're solving around the patient experience, the family experience around the patient, our users, and and he's introducing more people in his network. Another XNHS, executive Director of Health and Patient Data.
[00:22:36] steve: Tim Kelsey. He saw what I was doing and instantly jumped on board to say, he was big in health informatics and creating systems to share data in order to improve operations, improve outcomes. He's worked with the World Health Organization, with the NHS. He came over to build our digital health network and agency in Australia.
[00:22:58] steve: And and [00:23:00] he. He climbed on onto the Nabu family tree and joined as our chairman. And you think, why are all these really successful, seasoned professionals trying to help some knucklehead dad who's, just trying to get through life a little bit easier? And I feel truly blessed by our team.
 
 
App Rollout and Global Plans
[00:23:15] iris: As somebody from Portugal, is the app available worldwide yet?
[00:23:18] steve: It will be standby, gimme, I can't wait. Gimme five more email addresses. And, we will be coming to that side of the world. So we're in the process now of running some pilot programs.
[00:23:29] steve: We're quantifying, qualifying, all of our impact on the system. And we're not waiting for that to all be wrapped up. That's gonna take a year , to run these pilots. But in the next few months, we'll start to put it into the app stores for iOS and Android, that first product, that advocate product.
[00:23:45] steve: And then we've got a whole program around, community education, and a few clinical pieces in our product roadmap. But really excited about getting out there. I'm really excited about coming back. I've actually never been to Portugal, but, I've been invited. We have [00:24:00] web summit here.
[00:24:00] iris: We have a lot of stuff here. Zoe, 
[00:24:02] steve: you've got a very epic surfing wave. I'm told Ozzie love to surf and they talk about yes, Nazar, nazar, 
[00:24:08] iris: na nazare. You need to go there. Naza waves are like astronomical. 
[00:24:11] steve: Yeah, they are. I've been invited to a barbecue. Apparently you've got some epic barbecues in Lisbon.
[00:24:16] iris: We have the best food. I'm in just in general the best food. Best food I grew up in UK and Lisbon is beautiful and we have a lot, a big star, star startup, community now, especially in our Gar and Bar. It's a lot that you could do here.
[00:24:27] iris: We need apps like that because we have, hardly a lot of investment in health tech. 
[00:24:31] steve: Yeah. Let me ask you then. You both have been asking me a lot of questions. Kerly when you've been coming up in your life, in your journey with health, what's been the biggest frustration when it comes to dealing with support workers or dealing with your family around communication?
[00:24:46] steve: Does this resonate with you? 
[00:24:47] Kerly: Yeah, a hundred percent. Especially the fact that everything is so separated into different things. I always get frustrated with the fact that when you go to the dentist or you go to the opticians, it's separate from the rest of your body, [00:25:00] which I don't understand why, like you go to the ER for every other part of your body, but your teeth and your eyes is something different.
[00:25:06] Kerly: And so if something goes wrong with those things, then. They don't send the information back to the gp. They keep it to themselves that you have to go to get a printout and take it to them. They don't update them and that's frustrating. 
[00:25:18] iris: As somebody with five sleeping disorders curly, like anything else.
[00:25:22] steve: Yeah. Geez. Bye. And then when you're 
[00:25:24] Kerly: talking to the doctors as well, my whole thing is I know that they have a lot of patients to see, but when you go in, sometimes they ask you, like for a list of , what medications you've been on, or if you go to the er, they ask you and as if you have multiple comorbidities or you have a complex medical history, I sometimes shocked that they think that you know how to spell all of the medication that you're on.
[00:25:46] Kerly: And I don't know. And when you get it wrong, they already have it. And yeah. And if you are able to spread everything, then they say oh, wow. How come you know all your medications off by heart? It's then they don't think you're as ill because, you can memorize them all. 
[00:25:59] steve: [00:26:00] Yeah. 
[00:26:00] iris: Oh wow.
[00:26:00] iris: Okay. In my case, and I'm gonna split this into two parts, Steve, just because you mentioned, medical and then family, which I think of two unique, but very important points. And I think a lot of us, at least in an narcolepsy community, because we have a the diagnosis, average onset is between, eight to 12 years, I think.
[00:26:19] iris: Something. Yeah. It like, I was diagnosed at 28 and I believe I've had narcolepsy since I was 15. And one of the things that we really would love to change and is the biggest frustration for, especially for, a lot of us that have been diagnosed for a while now and we continue to see it time and time again and it's people are diagnosed and they have no idea what kind of condition they're walking into.
[00:26:40] iris: They have no idea of the expectations of how their life's gonna change of, what it means to have that condition. And I think that gives leeway to a lot of mistakes that you could make that are avoidable, yeah. And especially, I had a very. Like bad experience. And I think a lot of that could have been avoided if I had been given just little eto, little leaflet saying, Hey, welcome to narcolepsy.
[00:26:59] iris: [00:27:00] Yeah. This is it. This is your community. And this is what can happen to you. And so that's one. It's like that kind of, just that introduction to diagnosis and the second in fa in family terms. I see. We always say that. 
Family Support Gaps
[00:27:12] iris: At least for most of us, and I don't wanna say everybody because you are the example that is, you know?
[00:27:17] iris: Luckily not every family is like that, but we usually see more support from strangers than our own families. 
[00:27:22] steve: Absolutely. And absolutely. It's hard. Has to be. I think it's very hard for families, but I think you, you brought up a really interesting point because one of the I get frustrated. 
Three Needs Framework
[00:27:30] steve: When I'm told I should have done something, and I now see a health journey in three columns.
[00:27:37] steve: I see the human need that we all have because we're human. I see the social need being the system that we're being governed by. And when you go from one to the next, so much gets lost. And that system includes a bunch of technology and a lot of providers and different government rules and regulations and whatnot.
[00:27:55] steve: Then I see a cultural need. And I think that's where you get into [00:28:00] your family dynamics. When you speak to people in Saudi Arabia or the United Emirates, there's a very different relationship between husband and wife, father and child versus mother and child. And whilst those dynamics are changing quite a bit in, as the years go by and we there's a lot more transparency.
[00:28:19] steve: I think that there's a lot of that residual knock on effect culturally that becomes quite challenging for people, especially when all you want is help, especially when you are the one who, you feel like you can't speak up because one, you're sick of hearing your own voice and sick of talking about it.
[00:28:36] steve: About it. 
When People Stop Listening
[00:28:37] steve: And the thing that I got was people didn't want to hear what I had to say. People as, as woke as we are mostly woke when it comes to social media. We are like for, so when you ask somebody, I always joke with English people, that English, English people ask if you're okay three times and no point in asking those.
[00:28:56] steve: You all right. How you going? You all right? You okay? Me? Yeah. Anything good? [00:29:00] You don't actually want to know. That's just asking, say, saying hello three times. As soon as you start saying how, if you're struggling, if you start saying you're having a bad day, very quickly people start to shuffle on down the road.
[00:29:12] steve: Yeah. Because you know you're crazy. What, who lost you? Or it's depressing. And they don't want to face it, or they don't want to think that's what life is really like. So you slowly find yourself isolating because you don't want to burden people. And I recognize that, and Bowie would apologize in the night and it was heartbreaking. And you just think, how do I take this on? And you can see where. Families don't understand and you don't wanna continually be the one to have something extra. It's really hard.
[00:29:39] iris: It's interesting what inspired you, because you were in a completely different industry, what inspired you to just really leap into health tech, and start something, 
Retelling Trauma in Care 
[00:29:48] steve: when we started Nabu and I started to show it around, I really struggled, digging back into, digging back into this world where you don't realize how cracked you are because [00:30:00] there's just been pressure on you. It's like an egg that's cracked, but you keep pressure on it and you can't see the cracks.
[00:30:05] steve: You take the pressure off. Cracks, and I'm now at a point where transitioning from pediatric to adult services, you're retelling a lot of that story. You're getting that old frustrations coming back because it's all new people and they don't get it and they don't believe, or they didn't get the instructions that you spent eight hours of interviews with because they've got a process and a system and you think, oh my God, this is such a waste of time.
[00:30:29] steve: You're now wasting more of my time. 
[00:30:31] iris: Yeah, 
Calling to Build Nabu
[00:30:31] steve: And I was in a meeting with Dr. Steer, Peter Steer, who's, at the Children's Hospital. And I was getting a little bit emotional and he said to me. Your true calling is where your great gladness and the world's deepest needs meet.
[00:30:47] steve: And it's a quote from a theologian, named Frederick Buchner, who was talking about your true vocation. Vocation is your. Profession, but vocation comes from the word vo, which is your calling. 
[00:30:59] iris: Yeah. 
[00:30:59] steve: And, [00:31:00] your purpose. And he said that quote, he said, where your great gladness is where the, and the world's deepest needs meet.
[00:31:07] steve: And that struck me to the ground, that one. And what he was referring to my love of my child. Everything that my family had been through to achieve this outcome of, a well-balanced, beautiful young woman who's, determined.
[00:31:21] steve: To make her place in the world. And I think that's what every parent wants for any of their kids. But it's certainly what I wanted. And yeah. . It was a real turning point to say. Not only am I going for it, but I'm going for this in with hyper speed.
[00:31:35] steve: We're now foot on the gas and nothing's gonna stop. It's been awesome.
Finding the Right Team
[00:31:39] steve: there's amazing people, not just Peter, technologists our chief technology officer, a guy called Ben King. I met him over a Zoom meeting and we realized we live, a hill, a park, we could literally have walked to each other and spent the day together.
[00:31:51] steve: Ben's a veteran. He was a young dad. I didn't even know his last name before we started really sketching this thing out properly because it just clicked. A [00:32:00] guy in my neighborhood reached out to me because he saw that I put a company name on LinkedIn and he said I don't know if you know what I do, but, I'd like to introduce you to a few people who can help you.
[00:32:09] steve: This product, and I asked them to get involved with the company because those people were really solid leaders in the health space, and they were the right type of leader to gravitate around a product like this and a mission like this. They got it. They got it instantly and they wanted to be a part of it, which was just amazing.
[00:32:26] steve: I'm truly lucky , for that network and those people that have come to help out. When I'm having a bad day, I've got a photo of all of 'em and I look at it and I think if they trust me and they've put their names and their time to helping me, then I can keep going.
[00:32:41] steve: And of course, we've got some good inspiration with our kids. 
 
[00:32:46] Kerly: That's really nice. Steve, I wanted to ask you, did you have experience in tech before you, you started this, like you'd done some courses or you just happened to be good with computers or good with that?
[00:32:57] steve: I'm not the computer. Nobody. Lets me touch the [00:33:00] important tools. 
[00:33:00] iris: Okay. That's curly. Yes. 
[00:33:02] steve: Yeah, that's, yeah. It's I just clicked the link. How do you 
[00:33:05] iris: start a tech 
[00:33:05] steve: then, if 
[00:33:06] steve: Into that's what's fascinating. 
[00:33:07] iris: Had 
[00:33:08] steve: My world has been about solving problems and my world has been about, relationships between a product and its user, be it a musician and things that they create and how to enhance that relationship and how to package it and how to tell it authentically. And, I had been involved in developing other. Products that were technology. I'm not a technologist, but I'm a solutions guy to say, that's too complicated.
[00:33:32] steve: It needs to be designed like this. I'm not a graphic designer, but I think visually and I can get the bulk bits down. Enough to then work with people. And I think the idea of being what I've been told, I'm a polymath, so I'm a, I'm good at a bunch of things and I'm a master of none of them.
[00:33:48] iris: Oh, I, that's the best these days. 
[00:33:49] steve: But they let me do the talking. And what I think where this really resonated was the ability just to think in terms of, in really basic building block steps of. [00:34:00] Everywhere I needed this solution to work, how I needed it to work, what I needed it to do.
[00:34:04] steve: And working with Ben and Aush and, Puja, we've got an amazing team. Sanda, , Neil Camp. I can't forget anyone now 'cause I've said some of their names. But, we've got, amazing group of people and advisors, who have really schooled me on what happens at the clinic, what needs to happen for all of their expertise in technology and health.
[00:34:25] steve: Health, technology, clinicians, impact people as well, Belinda. And, and the impact side, really bringing that intel into every part of our product has been my mission. I feel like I'm a conductor. I don't play the instruments, but I play the instruments. I don't press the keys, but I play the instruments.
[00:34:41] iris: That's a really good way of describing it actually. Yeah, because I was just wondering, I think, it's. 
Listening to Patients
[00:34:45] iris: Very unique because you are not a patient yourself. And I think , for me, that's what makes it even, a bit more special because , where do you go to, if you're not obviously a patient yourself to know exactly what do the patients need, yeah. Do 
[00:34:59] iris: you speak to [00:35:00] them? Do you contact them? Do you just talk to your daughter? Like how do how did you go about it? 
Advocacy Not Tracking
[00:35:04] steve: All of the above, right? You wanna listen to everyone's experience. And I'm really excited now that we've got the foundation in place, I'm really excited to come back to you and Kerly and say, okay, people living with narcolepsy in Portugal and the uk talk to me, if we are to, if you are to type narcolepsy into that chronic conditions box.
[00:35:25] steve: How would you structure your communication? How would your notes become, because nbu is designed to be quite dynamic, to restructure itself based on what you need it to do. It's your advocate. Yeah. 
[00:35:38] iris: It's 
[00:35:38] steve: not. Like you, you see a lot of the health trackers, right? It's the same thing. 
[00:35:41] iris: Your 
[00:35:41] steve: Apple watch.
[00:35:42] steve: I like the OA ring because I feel like it cares about me. The Apple Watch just is you close your rings, you didn't close your rings today. You need to walk more, you need to stand up, you need to sleep. It's like the German of the wow. Of the of the health trackers. I think I want Navi to be more of that caring.
[00:35:59] steve: More [00:36:00] fluid type of advocacy to help you with what you need, and that, that's the next step of our development is to bring in that side of things based on multiple conditions. So if you've got, if you've got more chronic things that you're dealing with or different challenges, 
[00:36:13] iris: it will 
[00:36:14] steve: cross-reference care plans and distill out the information that you need, not.
[00:36:19] steve: Leaving you to search the worldwide web of everything. But 
[00:36:22] iris: yeah, 
[00:36:22] steve: to to help you really refine that so that you're not constantly looking. 
Diagnosis Across Borders
[00:36:26] iris: I think I'm just, I just wanted to actually tell you just for one experience I had that obviously because I've lived with narcolepsy in three different countries, and two different continents.
[00:36:35] iris: It's really funny because if you go to the uk, I had already been diagnosed with narcolepsy when I was here in Portugal, but the UK does not accept diagnosis from other countries ah, at all. So doesn't matter if you have, it doesn't matter who diagnosed you. You have to be diagnosed by us 
[00:36:50] steve: by start again.
[00:36:51] iris: Yeah, and I think that's something that's, it's very interesting when you talk to, these apps because maybe, there could be hopefully one day a worldwide [00:37:00] standard, that could encompass all of the different, one different, chronic ulcer and says, Hey, you know what, this person has been diagnosed.
[00:37:06] iris: Here's her certificate, and it's valid everywhere.
[00:37:08] steve: Yeah. And that's what's up isn't worked on like these passports and I'm hoping That's amazing. Hoping we're that we can be part of that. We're working to integrate our national health. Record information. And we would do the same in the uk there's an API into your national health record, and so if we can achieve that, we can make it easier to travel.
[00:37:28] steve: I, I think more initially. You asked the question around am I a technologist and how did I design it? I just went step by step through my problem to say, what are actually my biggest pain points? Because it's not tracking my health information, it's communicating with my partner. It's that thing of being hounded for the same things over and over again when you don't have time.
[00:37:47] steve: So how do we then put the solution in place, those things, and then we can get into the system stuff, right? Yeah, just talking to somebody about a technologist, about, Nabu will generate a script for you if you have to [00:38:00] call emergency. What should you say based on your condition, if you call 9 1 1 or.
[00:38:04] steve: I don't know the number in the uk, but in here it's, 
[00:38:07] Kerly: yeah, 9 9 9 9 9 9 0 1 9 9 9. 
[00:38:08] steve: So here's a script, right? So you know what's coming in and they say, what? That's not gonna work. 'cause it's gotta be compliant, it's gotta be this. And if you think an emergency doctor cares about that. They just want know quickly.
[00:38:20] iris: Yeah. 
[00:38:20] steve: Where do I need to where do I need to look? What, yeah. Spend 36% of their time researching. 
[00:38:26] iris: I think it's interesting 'cause we had we actually had a friend that had a, a, an experience that really, that could have been solved. But yeah, because she had a cataplexy attack, which is obviously part of narcolepsy type one and I think right.
[00:38:38] iris: Curly, she had the bracelet, I think that said I have narcolepsy with cataplexy. 
[00:38:42] Kerly: Yeah. Yeah. Or a necklace. She had something on that, that, that had this, the sign with the snake, the house. Yeah. Yeah. Yeah. 
[00:38:49] iris: Yeah. And they, not only did they see it, but they did. I don't think they realized what cataplexy was.
[00:38:54] iris: So they treated her. They gave her, I think it's something like they gave her 
[00:38:57] steve: narcan because they thought she was ODing. 
[00:38:59] iris: [00:39:00] Yeah. And it's getting worse thing you can do to somebody with cataplexy. Imagine an app that actually not only for, us to be able to explain, but if we're not in a position to be able to speak which cataplexy does that for me, it takes my voice away. That is the most helpful thing, to have an app that can actually just speak for me. 
[00:39:15] steve: Yeah, absolutely. And that's part of it. You think in terms of people who don't, who are, living in a country where they don't speak the language to be able to easily translate.
[00:39:23] steve: Yes. I've heard stories of people who got, who were given the wrong medication, and it ended up going very badly for them to avoid. And that's because they had the wrong language, right? Yeah. So to be able to be able to just communicate those basic needs out where you're not having to constantly do it, that's that's a huge support for people.
AI Tools and Favorite Apps
[00:39:40] iris: Yeah, I think AI is definitely a key. It's completely changing everything in the tech world, not just health, travel industry, everything. And it's an amazing opportunity that good to grab onto, could change our lives 
[00:39:51] steve: A lot for us 
[00:39:52] iris: patients. 
[00:39:52] steve: I still can't prompt chat GTP to do anything, but, not anything useful that is, but I've got some colleagues that absolutely [00:40:00] love it.
[00:40:00] steve: There's a guy that I work with on as part of my other company and he's always telling me about his prompting and the stages for prompting, and I think, wow, that's me. That's ours. 
[00:40:09] Kerly: Iris has a spreadsheet. Steve, if you wanna copy, here's a whole, but all the AI calls 
[00:40:14] iris: for 
[00:40:14] Kerly: free. 
[00:40:14] iris: Yeah. 
[00:40:15] steve: Like 600.
[00:40:15] steve: Wow. Yeah. Jesus. Fire it away. I'd love to see it. I'd love just to see it. I just, I'd love those spreadsheets. 
[00:40:21] iris: Oh, fire it away. I don't mind. I'd just, I love ai. I think it's it we're experiencing a revolution,
[00:40:26] steve: okay. So then let me ask you this question. What's your favorite app on your phone? 
[00:40:30] iris: Oh no, that's not fair.
[00:40:32] iris: Wait. AI app 
[00:40:33] steve: Fair. Any app? What's your favorite app currently? What's your favorite app? 
[00:40:36] Kerly: I'd say chat. Spotify is the one I go to the most, and then Spotify and then Instagram in chat. PT and Google Drive. There you go. Yeah, probably LinkedIn and Notion. Notion. Oh my God, I love Notion. Oh yeah, she's obsessed with that notion.
[00:40:49] steve: I like it. 
[00:40:50] iris: Yeah. Notion is amazing, especially since ai. Oh, I love it. 
[00:40:54] steve: I'm gonna download Notion. I don't have that app 
[00:40:56] iris: I haven't found one that compares 
[00:40:57] steve: yet. 
[00:40:58] iris: Oh, yeah. Asana, not Trello,, [00:41:00] none of them compare. 
[00:41:00] steve: I always just use Google Docs, but I'm gonna try Notion since it's your favorite and maybe one day my app will be our app, I should 
[00:41:07] iris: say, with my team.
[00:41:08] iris: Yeah, you'll adore it because, like work life, everything is in notion and it governs my life and knows everything. If I could just, click it with chat GBT and connect it, then I'd be great. 
[00:41:17] steve: It governs my life. You know what? I'm just delighted. Nobody said Slack because.
[00:41:21] iris: No. I hate Slack., Ooh, sorry. Sorry. Slack. But I don't like you. 
[00:41:24] steve: No, 
[00:41:24] iris: we like, I dunno. . It's the way that it communicates, like discord. I never understand Discord. I think it's a.
[00:41:29] iris: Generational thing maybe. And Slack is the same. It confuses my head. 
[00:41:33] steve: Yeah. 
[00:41:33] iris: Yeah. Yeah. But I, we do rely a lot on AI ever since it came out. And I think especially for us with, this type of neurological, chronic condition it's really vital, 'cause it enhances your productivity and one thing we don't have is energy.
[00:41:44] iris: Yeah. Apps are everything these days. 
[00:41:47] steve: Anything to help optimize and make sure that, obviously safety is also a big issue there. Yeah, really important. Yeah, I was 
Safety Compliance and Encryption
[00:41:53] iris: actually gonna say how, ' cause that must be a very delicate, and obviously you have to have a lot of compliance, data and questions and [00:42:00] how do you even go about, the safety part of an app like this.
[00:42:03] iris: It's protect people,
[00:42:04] steve: yeah, so making sure that, when you onboard a support worker, and we can do it in Australia where we're talking about a solution. In the uk when you onboard a support worker, it does a background check. It does a driver's license check, a police check, checks their credentials for working with people with disabilities.
[00:42:20] steve: That's an important feature for me. Everyone in our. Community has been through enough and you never wanna have those horrible things happen. 
[00:42:27] iris: Yeah. 
[00:42:27] steve: Making sure that accounts and information is encrypted, not only. When it's stored, but also in movement and all of our team are fully employed, there's two factor authentication for them to, for our team to be working.
[00:42:42] steve: If anybody's tapping into information flags go off that, that somebody's accessing personal information and it locks them out. So we've got protections in place against that. That great. 
[00:42:52] iris: That's very good. 
[00:42:52] steve: And like I've said to people the information. 
When You Need Help Now
[00:42:54] steve: It's important for safety, but when I was starting this journey, and certainly even today when I needed [00:43:00] help, I didn't care.
[00:43:01] steve: I didn't care about that. Yeah. And but I think kerly, in the first seminar of when I met you. Took that photo together and I hope we use that photo. 
[00:43:08] Kerly: Yeah. 
[00:43:08] steve: When we took that photo so there was a guy behind us from one of the European countries, and he was saying, AI has now got your information and you can do this, and you can do that.
[00:43:17] steve: And I thought, wow, this guy's never been sick. Because when you want help, right? And you need help. You don't care. Yeah. You're so email blank. Email addresses because you're just this what you need. I remember when we moved to Australia and I said Bowie's oxygen machine needed servicing.
[00:43:32] steve: And I sent a note to the doctor at the hospital who didn't really know me from Adam and, his office responded with this worksheet that said, so you think you need oxygen at home and you fill out this worksheet, but there's nothing to do. There was nowhere to send it. There was no, these are the next steps.
[00:43:49] steve: And you think, wow, I need oxygen and I don't know how to get it. 
[00:43:52] Kerly: Wow. That's, 
[00:43:52] steve: I dunno how to get oxygen. And so I rang the company and I made up a few little things that might not have been true white wise. 
[00:43:59] iris: [00:44:00] But I needed, necessary. Necessary.
[00:44:01] iris: Yeah. And 
[00:44:01] steve: my answer when I got called out on it was, yeah, I'll tell the story. No problem. Probably don't wanna go ahead to anybody. 
[00:44:08] iris: Yeah. You own it. 
[00:44:09] steve: Yeah, absolutely. We do what we need to do to get by.
[00:44:12] iris: Yeah. Exactly. Completely understandable. I think we talk a lot about stigma, obviously in our community, as well, especially with narcolepsy.
[00:44:18] iris: And I think that's one of the biggest problems. It's very hard for people to relate to something they've never experienced and Yeah. And they've never been close to or seen, face to face. And I think, yeah. It's very rare that we find, we see parents who really give up their whole lives to dedicate, their lives to helping their children, deal with chronic illness.
[00:44:35] iris: And I think it's beautiful. Yeah, and it's really, it's amazing. Very amazing. 'cause unfortunately there's not a lot of parents like that. 
Parenting Dynamics and PTSD
[00:44:43] iris: So have you, I dunno if you've met any parents like that, that are the opposite kind of mentality to you. 
[00:44:47] steve: Look, I've seen things that I just don't understand.
[00:44:50] steve: And I'm glad I don't understand them. And and I struggled. In our family dynamic, I feel like we've always had the right, unified goals in mind. And, there's ebbs and flows [00:45:00] with everything when one is strong. The other one can pick up the slack and, I feel very lucky.
[00:45:04] steve: Bowie's mom and I aren't together. But we've never had an unkind, or at least I don't think so. Our girls don't know, our struggles. We kept that very much to ourselves and we kept our focus on what we needed to achieve, not just for Bowie, but for Harlow as well. Harlow's, Bowie's, younger sister, and, yeah.
[00:45:21] steve: And I think disability and chronic illness adds a lot of challenge. And you'll see people weaponize their kids against each other and they'll use illness though to perpetuate this need to be a carer. They'll continually define their problems by their child, which when you get into marking what actually can bring somebody down.
[00:45:44] steve: There's a remarkable effect. You start talking about somebody's disability and you can watch the decline, yeah. Talk about their illness, and you can watch their SATs go down and their blood pressure go haywire. Yeah. And you don't realize Interesting. The anxiety that's being created, the PTSD that's created and [00:46:00] perpetuated and and
[00:46:01] steve: too many parents, they get trapped in that quicksand and they don't know. 
[00:46:05] iris: Yeah. 
[00:46:05] steve: Which is really sad because people also won't tell them, yeah. And that's the other tragedy that you go through. It's a hard subject, 
[00:46:12] iris: isn't it? 
[00:46:13] steve: You have a flag that every time you wave it, people just say, oh, it's so hard. It must be so tough. And you live in this script. I lived in it. I had a very good friend of mine. He said, Steve, sometimes I feel like I'm hearing the same script over and over again and you might need to update it. And he was right. Absolutely right. I was stuck in that rut of, 
[00:46:30] steve: You know that past journey and I needed to get beyond it, we all need to get beyond it. Yes. And I'm hoping that we can create these tools to help get us out of that situation.
[00:46:40] steve: It's it's tricky. Hey, so it's I'm actually really struggling at the moment 'cause I was up ridiculously early.
[00:46:46] Kerly: We have two more questions 
[00:46:47] steve: for you. Yeah, please. Okay. Please. I'm sorry, but, what I was gonna say is I want a photo. I'm gonna take a screenshot of all. Oh yeah. 
[00:46:54] iris: Why not. 
[00:46:54] steve: But ask your questions first and then we'll smile for the camera. 
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[00:46:57] Kerly: What gives you hope right now, [00:47:00] especially in the world of health, tech and patient empowerment?
[00:47:03] steve: Yeah. In the world of technology, what gives me hope is. People because, you hear about all of the challenges in health, right? You hear about insurance companies posting record profits while practitioners are closing their doors because they can't afford to stay open. 
[00:47:22] steve: You hear about, you hear about all of this amazing technology that's been invested in, none of it.
[00:47:27] steve: Seems to account for the hardest parts of the day for the people who are on the actual front lines. And then I went to the NHS conference and I started meeting a lot of people in the UK and I heard how passionate they are about providing. And I know that's, I know that it's difficult, but when you see that on mass, with people, it's really inspiring.
[00:47:49] steve: And, and I went to the United Air Emirates and and I met a woman called Andrew who's working at a place called the Al Nor Center. And I want to find the description because [00:48:00] it's not, they don't use. They don't use the term disabled, they use the term determined or determined people. Now how awesome is that?
[00:48:07] steve: Wow. Love that. And surprising. Like it's in the UAE and I cannot wait to go back there and spend time with her. They're very for 
[00:48:13] iris: very, 
[00:48:13] steve: I met a woman last night, on, in a meeting, about a neuro technology who has a daughter with a very rare condition. Who went out and adopted a boy who's got the same condition.
[00:48:25] steve: What? Because that boy was abandoned and they knew that they could care for that child. 
[00:48:30] iris: Oh,
[00:48:30] steve: She chose that. Like we, we live in a world that people wouldn't choose what we've got. 
[00:48:35] iris: Yeah, 
[00:48:35] steve: she chose it. She chose it. And that's wow, so inspiring. These, there's so many people out there when you hear the stories and that's why I love this idea of podcasts 'cause you can meet people.
[00:48:46] steve: And what gives me hope is that there are still humans, running healthcare. And I just seem to be continually meeting some really great ones around the world. And I'm blessed. I'm 
[00:48:56] Kerly: blessed. 
[00:48:56] steve: What gives you hope Kerly 
[00:48:58] Kerly: that technology is [00:49:00] increasing? So yeah, new medicines are coming out, greater minds are coming out.
[00:49:03] Kerly: Maybe they will be able to make something that's going to be actually helpful in their everyday day to day life. 
[00:49:10] steve: Yeah, absolutely. And Iris, what gives you hope? 
[00:49:12] iris: I'm gonna go with Curly's answer because not as hopeful as she is, but yeah, I agree with you. Curly. I'm from different worlds, so it's, I've, I've seen how the UK works.
[00:49:20] iris: I've been here in Lisbon and I lived in Angola for six years. It's a bit harder to be hopeful because you know that some parts you're hopeful for them. Other parts of the world they'll never get, unfortunately, they, when are they gonna get it? Yeah. So start. Yeah. And 
[00:49:32] Kerly: yeah.
[00:49:32] steve: Yeah. 
[00:49:33] Kerly: So the final question is, 
[00:49:35] steve: make it a doozy.
Seeing Superpowers in Difference
[00:49:36] Kerly: What's one thing you wish more people understood about invisible rare conditions? 
[00:49:41] steve: It's interesting. The first time I heard. The word autism autistic 
[00:49:46] iris: was 
[00:49:46] steve: from my dad when I was a kid, and I didn't have any comprehension of this, in Canada. And he had a factory for airline parts.
[00:49:54] steve: And there was a group of guys that worked in this area and this guy called Daniel. And Daniel, was hard to [00:50:00] talk to. He played music, which made me really admire him. His brother spoke for him, and dad always referred to him as his best employee. And I thought, whoa, what's that? And then he, then eventually I learned that Daniel was autistic.
[00:50:12] steve: But what that meant was Daniel did his job incredibly well. He made things perfect and he needed a bit of extra space. For his needs. But he wanted to work. He showed up, he did his job incredibly well. And that was him, that was his superpower detail and precision superpower. I was, I, that was one of the moments I haven't had, the most present relationship with my dad.
[00:50:38] steve: And that was one of the moments that I realized that we are cut from the same cloth in a lot of ways. And, as much as you don't understand somebody, you get these little kernels of really understanding them and maybe understanding yourself a little bit more. What I wish people would understand, especially now in this age of TikTok and, instagram, although we seem to be going now back to more [00:51:00] reality, is that, there are these superpowers in everybody. And, society is made up of all things colors, sizes, shapes, abilities, creativity. Rigidity, all of it. And it's a puzzle. It's tapestry that works together. And if you take a component out, like the environment, you take one thing out of the cycle and it doesn't work properly.
[00:51:24] steve: And we're continually taking things out of the cycle and then complaining that it doesn't work properly. We're not realizing, yeah. That's it. And I admire, like you look at the Jewish community and and I know there's a lot of political struggles out there right now, but I look a lot of. A lot of the programs here in Sydney that are really inclusive, come from that family mentality of everyone's got a place and we need to really harness that.
[00:51:48] steve: And that, yeah that's one thing I wish people would have their eyes open to. How to bring people into the world and give them purpose. Look at somebody and help them get purpose. Inspire. [00:52:00] We can all do it. We can all do it.
[00:52:01] iris: Yeah. 
[00:52:02] steve: And not a not enough people take their.
[00:52:04] steve: Take their heads out. That covered place to, 
[00:52:07] iris: that's why we have the podcast. The a motto is to share a story. To change a story. 
[00:52:11] steve: So 
[00:52:11] iris: hopefully one by one we can. That's great. Change everybody's, 
[00:52:14] steve: share a story to change a story. I like that. 
[00:52:16] Kerly: Yeah. Hopefully. 
Closing Thanks and Next Steps
[00:52:18] Kerly: Thank you Steve for coming on.
[00:52:20] Kerly: Thank kerly, Iris It's been a pleasure. 
[00:52:22] steve: Thank you. It's such a pleasure. I feel , so lucky to be here. And I hope to follow up again when I get you the app. And you can play with it. I'll, for the new one, I won't forget because I need it. Excellent. 
[00:52:32] iris: Thank you so much Steve. Have a great day.
 
[00:52:33] Speaker 2: Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life, CIC, which is a nonprofit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website [00:53:00] www.napsforlife.com.
[00:53:03] Speaker 2: If you or someone you know. Has a sleep disorder and would like to share your story on narcolepsy navigators. Please email us at narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.
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