S1E3:Advocacy Series: Advocacy in Action: A Discussion with Matt Hornsnell on Narcolepsy

In this episode of the Narcolepsy Navigators Podcast, hosts Kerly and Iris introduce their new Advocacy Series aimed at spotlighting changemakers, advocates, and everyday heroes in the field of narcolepsy. They welcome Matt Hornsnell, a sleep advocate diagnosed with narcolepsy type one and obstructive sleep apnea, who shares his extensive experiences in advocacy, public speaking, and research. Matt discusses the importance of community support, the challenges of male representation in advocacy, and the delicate balance between personal life and advocacy work. The conversation delves into topics like the impact of narcolepsy on relationships and mental health, and the necessity of setting boundaries. This episode is an inspiring exploration of how personal stories and lived experiences can drive awareness and change.

Bio:

Matt Horsnell is a husband, father of three, and sleep advocate living with NT1 (narcolepsy with cataplexy) and obstructive sleep apnea. As an author-advocate, he has published research on lived experience with sleep disorders. Matt also works as a consultant for the pharmaceutical industry and on behavioral sleep projects.

Matt has presented in national conferences at SLEEP and the Society of Behavioral Sleep Medicine (SBSM). Additionally, Matt is the Co-Host of Hypersomnia Foundation’s UNIGHT.

Matt was recognized as Project Sleep’s Inaugural Sleep Advocacy Champion in 2023. In 2025, he was recognized with Hypersomnia Foundation’s Patient Advocate Award. Matt presented on Sleep Health Equity to The White House (2023) and was featured in a CNN article about life with narcolepsy (2024).

Highlights:

[03:09] The Importance of Social Support

[07:13] Challenges and Rewards of Advocacy

[14:03] Male Representation in Narcolepsy Advocacy

[22:02] Parenthood and Advocacy Balance

[23:02] Setting Boundaries in Advocacy

OFFICIAL WEBSITE
www.napsforlife.com 

Transcript

Matt - Advocacy Series - Jul 21, 2025
[00:00:00] Kerly: 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, Kerly. 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] Kerly: 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 policy shapers, we'll hear how they're navigating systems, building communities, and driving change. Because when we speak up, things shift; when we come together, we move mountains. Get ready to be inspired, informed, and empowered. This is advocacy in action. This is Narcolepsy Navigators [00:01:00] Podcast.
 
[00:01:09] Kerly: Hi everyone. Welcome to Narcolepsy Navigators. I'm Kerly, your host, and today we are having our advocacy series and I am Kerly. I have narcolepsy type one,
[00:01:20] Iris: and I'm Iris, your co-host for today, and I have narcolepsy type one as well. 
[00:01:26] Kerly: And today we have Matt. Matt, say hello to the people.
[00:01:30] Matt Hornsnell: Hello everyone. How are you? It's great to be here. 
[00:01:32] Iris: Matt Hornsnell is a husband, father of three and sleep advocate living with narcolepsy type one (narcolepsy with cataplexy) and obstructive sleep apnea.
[00:01:42] Iris: As an author advocate, he has published. Research and lived experience with sleep disorders. Matt also works as a consultant for the pharmaceutical industry and on behavioral sleep projects. Matt has presented in national conferences at Sleep and The Society of Behavioral Sleep Medicine.
[00:01:59] Iris: [00:02:00] Additionally, Matt is the co-host of Hypersomnia Foundation's Unite. Matt was recognized as Project Sleep's inaugural sleep advocacy champion in 2023. In 2025, he was recognized with Hypersomnia Foundation's Patient Advocate Award. Matt presented on sleep health equity to the White House in 2023 and was also featured in a CNN article about life with narcolepsy just last year. Very happy to have you here, Matt. Super excited. 
[00:02:27] Matt Hornsnell: Thank you guys so much. It's always so weird to hear my bio read off. And then I just wanna like absorb, Homer Simpson, into my chair here because it's weird. hearing that read out. 
[00:02:35] Iris: That Imposter syndrome? or no? 
[00:02:37] Matt Hornsnell: Yeah. I think that's natural. It's fun, listing off accomplishments, but at the same time, I, my mind constantly goes to, I wanna do more. Feel great pride for what I've done? What's next? Yeah, what's next? What's around the corner?
[00:02:47] Kerly: So how was your weekend 
[00:02:49] Matt Hornsnell: Weekend was great. I have a wonderful family, so I get to spend a lot of time with them. I've got 12-year-old son. I've got two, adult daughters who are in college and they're here for the summer. And so any chance to [00:03:00] spend time with them is wonderful.
[00:03:01] Matt Hornsnell: I also have a great partner. Her name's Heather. She works for Project Sleep, running their sleep helpline. Just spending time with family is the name of the game. 
[00:03:07] Kerly: That's nice. 
[00:03:08] Iris: That's amazing. I think it's interesting 'cause we wanted to have this Advocacy Series, especially because as advocates we feel that there isn't a lot of support, there's no kind of guideline, with advocates and how to get where you are, obviously, me and Kerly, we are nowhere near there, but we've also had to struggle to find our way through and it's really interesting to just learn different people's advocacy journey. What was the very first time that you were remember, that inspired you and you thought, you know what, I wanna share my story.
[00:03:39] Matt Hornsnell: Yeah. So first I wanna comment because you and Kerly are doing amazing work. I don't want you guys to discount your work. One of the challenges that I've had in my journey is I try to compare myself to other people in this space too. And quite frankly, comparing myself to Julie is a disservice to Julie and it's a disservice to myself, comparing myself to other advocates in the same way.
[00:03:55] Matt Hornsnell: It only adds to frustration and fuels that imposter syndrome.
[00:03:58] Iris: So true. 
[00:03:58] Matt Hornsnell: We all have a place. In [00:04:00] that ecosystem. I've never been bashful about talking about narcolepsy. So I was diagnosed at age 25 but I had about a 10 year period where I was just telling people in my community, I would talk about it publicly within m y friend group, perhaps at, the different Ys or gyms I would go to. But it was when I became a single dad with, my three kids back in about 2015 that I decided I really needed to make sleep work for me and not work against me. So I reached out across the digital aisle, so to speak, and I connected with Julie.
[00:04:28] Matt Hornsnell: I connected with a number of people who were very prominent in the space at that time. A lot of the names have changed but a lot of the organizations have stayed the same. And, I was like, I wanna do more, I wanna share my voice because I was so tired of getting beat up and it felt like narcolepsy had taken so much from me and this was my chance to punch back.
[00:04:45] Matt Hornsnell: My chance to let other people learn from the mistakes that I had made along my journey. Hopefully learn from some of the successes that I've made. Although I like to tell people I know more about how not to live with narcolepsy than I know how to live with narcolepsy. But along the way I've fallen [00:05:00] up if you will, and succeeded.
[00:05:02] Matt Hornsnell: So I reached out and, just asked what to do and at that point in time , just continued to share publicly. I got started a few years later a little more actively with Project Sleep getting involved with the Rising Voices program. Before I did that though, I was connected with Harmony Biosciences and a part of their No Narcolepsy campaign, which is an unbranded campaign about disease awareness, and so that launched my trajectory. And from there I've tried to partner with as many organizations as possible and I'd love to tell you a little about, a bit about those experiences too. 
[00:05:30] Iris: Yeah. Definitely. I would just love to know, because obviously for me, maybe 'cause I'm not in America, narcolepsy was not a word that I'd really ever heard before I was diagnosed.
[00:05:39] Iris: So were you already very aware of these organizations or narcolepsy and everything? 
[00:05:43] Matt Hornsnell: So when I was diagnosed, I had worked in a pharmacy for a number of years in college and I had what I would now consider to be fairly severe presentations of cataplexy. And when I was told that I had narcolepsy with cataplexy, it was hard for me to justify what I had was what these people in those cases, also had [00:06:00] I also like most everyone, the Hollywood mis portrayals of narcolepsy jaded my view of it. And even had studied some in abnormal psychology, so I was familiar with the term, but I wasn't familiar with the reality of the condition, which is excessive daytime sleepiness was that driving force.
[00:06:15] Matt Hornsnell: It wasn't these abnormal, falling over asleep moments that had been portrayed. And I think some of the lessons that I've taken away from that is, comparing symptom severity among individuals is challenging because just because I may have a worse case of excessive daytime sleepiness doesn't mean that someone who has a very profound case of cataplexy has it worse or better than I do.
[00:06:34] Matt Hornsnell: We just have different experiences with a lot of overlapping similarities. But, it was a steep learning curve when I started to get involved in advocacy. Wake up narcolepsy was just getting started at that point in time, fee ling out what their role was gonna be in the space.
[00:06:47] Matt Hornsnell: I knew about Project Sleep and I also knew about Narcolepsy Network and was becoming aware of Hypersomnia Foundation at the time. And I certainly have found my favorites, if you will, along the way. 
[00:06:57] Kerly: I like that. Find your favorite.
[00:07:00] 
[00:07:04] Iris: Yeah, I like that. I think there's just organizations that you maybe relate to obviously and you're more comfortable with. We'd like to know, little bit more as well about the work, that you've done. And especially, if somebody like me who maybe doesn't know anybody, doesn't know anyone, and I want to start doing something with the organizations, that first step it's hard to build that platform. 
[00:07:26] Matt Hornsnell: Yeah. I think, the timing was very right. Opportunity and preparation coalesced at the perfect moment for me to get involved with the different organizations. And to your point, one of the best gifts that any person with narcolepsy could get is to get to know another PWN or another person with a hypersomnolence disorder.
[00:07:42] Matt Hornsnell: Whether it be idiopathic hypersomnia, NT1, NT2, it doesn't matter because that common factor is that we all have excessive daytime sleepiness. And so it's important to know what each organization does. Project Sleep does great legislative advocacy and honestly, I love that. I have love-hate relationships with politics, a love-hate relationship with narcolepsy [00:08:00] and sleep.
[00:08:00] Matt Hornsnell: And so I made this little advocacy baby and was like, I can run with this, but that wasn't what I wanted to do. And there's great disease education in forms of the Narcolepsy Nerd Alert. You can learn a lot about the condition through Project Sleep and other orgs. But I wanted to get some peer-to-peer connection.
[00:08:16] Matt Hornsnell: And so about 2018 I saw a message on social media that Wake Up Narcolepsy was doing an online support group. And I love this idea because I don't wanna go anywhere when I'm tired, at the end of the day, I don't want to go to a support group and meet somebody in person. I'm cranky I'm gonna be driving.
[00:08:32] Matt Hornsnell: I, honestly, I don't know the demographics of the support group that were local here in Nashville were mostly older. By older, like 60 to 70-year-old women. they loved me. Mm-hmm. I loved me, I loved them, but I did not get the support that I needed in that in-person group. Just different times of their journey.
[00:08:48] Matt Hornsnell: I started to join these online support groups and after about two or three weeks, it was just a few of us. It was about three or four people that were consistently showing up. It was a pilot program originally, and I begged [00:09:00] at the time it was Claire and Lindsay who were running Wake Up Narcolepsy, and I was like, can we please continue these groups?
[00:09:05] Matt Hornsnell: Because I'm getting so much out of it and I think people will come. And I'm so glad that they did because you fast forward from 2018 to 2020, a nd you saw this huge increased need for online social support as COVID came around. And so Wake Up Narcolepsy had built this infrastructure and by the time COVID came, I was already facilitating a Wednesday in the group, and they asked me to facilitate a Saturday group.
[00:09:27] Matt Hornsnell: And so all of a sudden these groups went from, four, a couple months later to eight to where we were regularly having 20 plus people in these different groups. 
[00:09:35] Iris: Wow. 
[00:09:36] Matt Hornsnell: And it was just a g reat opportunity for me to expand my network, but also to give back. And one of the things I loved about the online groups was: I can learn from someone who's been diagnosed with narcolepsy for a single day. Because I get to see life through their eyes, and it reminds me of how far I've come. But also it takes my blinders off. I realize, okay, some things I thought I was doing well no, I'm not doing those things well, or I can do them better.
[00:09:58] Iris: Yeah. 
[00:09:58] Matt Hornsnell: And so giving back, but also [00:10:00] learning from the group was so invaluable. And so that was really cutting my teeth, facilitating groups, becoming comfortable, talking about sometimes taboo topics, sometimes awkward topics. Being there when someone's at a very tearful state, celebrating their successes of going back to school, of, getting married, of having a baby.
[00:10:17] Matt Hornsnell: That was just some magical times. 
[00:10:19] Iris: Yeah. 
[00:10:19] Matt Hornsnell: And from 2018 to 2024, I was facilitating groups one to two groups a week on average over that entire timeline. And it was just a great way for me to connect and grow again, meet people from across the globe which is incredibly cool. We have so many similarities.
[00:10:34] Matt Hornsnell: Between symptoms and presentations, we have a lot of differences in terms of treatment options. Stigmas and stereotypes vary as well, but it's just a great chance for me to really learn and just immerse myself in what it's like to live with narcolepsy. 
[00:10:47] Kerly: Yeah. 
[00:10:48] Iris: Yeah. I actually really love that I think especially for me I always saw it as, oh, you share your story so somebody else can share theirs. But it's true. I think everything that I did, was 'cause I was connected to people, other people. you've [00:11:00] written for Health Union as well, articles.
[00:11:02] Iris: Did one lead to another? 
[00:11:04] Matt Hornsnell: Great question. Taking one step back, it's also important to note that social support in online groups isn't for everybody, but social support can also take the form of Facebook groups.
[00:11:12] Matt Hornsnell: It can take the form of Reddit, if that's your social media of choice. 
[00:11:15] Iris: Discord.
[00:11:16] Matt Hornsnell: But, yeah, Discord. But to your point, blog articles: it's a great way to communicate and give back. And I think that's, one of the things that was great about the early days of Health Unit, which was sharing some of your experiences and getting the word out there.
[00:11:28] Matt Hornsnell: And g iving back from those life lessons was really huge. The groups led to the blog opportunities, which ultimately started a domino effect in terms of getting more and more involved in research as well. And along that way working with Wake Up Narcolepsy to have been working a lot with Hypersomnia Foundation over the past two years, helping lead their Unite program, which is a combination of education and support that meets once a month. And again, just trying to always stay present, even if I need to take a step back to do a little more personal time.
[00:11:57] Matt Hornsnell: ' Two times per week is a lot of [00:12:00] investment for me to give as a dad. So it was a nice change, yeah. To move to once a month for me. 
[00:12:04] Kerly: That's true. I remember the two times a week. Yeah, we did two times a week at the beginning.
[00:12:09] Kerly: There was something different about COVID time, and time seemed different. The way time was moving seemed almost slower or different. And so to have it two times a week, it was needed. So it didn't feel like so much of a burden or of a responsibility, but I think as people started to go back out, then it was needed less.
[00:12:29] Iris: Yeah. 
[00:12:29] Iris: And I think that's something that I know for me, because of my personal, life experience along with my advocacy work, along with my career and, everything that happens on top of advocacy, it came to a time where I had to take a really big step back, because especially when you are working, helping people, hearing their stories, it affects you a lot.
[00:12:48] Iris: Have you ever had a situation like that? 
[00:12:49] Matt Hornsnell: Yeah. I think you, touched on a great point there. It's an emotional connection when you're doing peer-to-peer interactions. It takes the right kind of person to facilitate groups like that because you do [00:13:00] absorb a lot of hardship. Yeah, a lot of joy.
[00:13:02] Iris: Yeah. 
[00:13:03] Matt Hornsnell: People will reach out frequently from the groups and I always encourage people in the groups to connect if they needed a resource or support, I encourage them to not just reach out to me, but to reach out to multiple people. that became a lot of messages.
[00:13:13] Matt Hornsnell: And, it would bleed into personal time. And for me, I had to learn to set some boundaries of, "Hey, I got your message. I want you to know I read it. I'm going to get back to you. 
[00:13:21] Matt Hornsnell: I can't message at this moment." 
[00:13:23] Matt Hornsnell: And for that point I always recommended people get a number of people's contact information because if you reach out across the globe to four different people, chances are one of them's gonna be able to get back to you with an answer or response.
[00:13:34] Iris: Yeah. 
[00:13:34] Matt Hornsnell: Or just to say, I hear you, but not to just rely on one particular person. 'cause that's a heavy load for anybody to carry. And it's tough 'cause you are living in the messy when you're in some of these groups and that can be, a joyous experience when you see someone work through it.
[00:13:48] Matt Hornsnell: But it can be hard and it's not, for everybody, but I think for those people who really need connection and support, particularly in the early days of learning to live with this condition. 
[00:13:55] Matt Hornsnell: It's invaluable. 
[00:13:57] Kerly: Yeah. 
[00:13:58] Iris: And just one thing, 'cause there's one big [00:14:00] difference here that as an advocate that you have that we don't and we'll never know.
[00:14:03] Iris: We see very few male advocates in this space. Do you feel kind a bit more of a responsibility because there's less of you? 
[00:14:10] Matt Hornsnell: Yeah. I love that question because I think it, highlights one of the reasons why I had a lot of opportunities too, a s a male advocate. Even though the disease prevalence is about so the same I was one of the few men talking about it I was also one of the few males that were willing to talk about, even among males who are talking to talk about, the emotions. The actual challenges to the whole idea that narcolepsy is a weakness tends to permeate, male psyches, fragile as they are. And I think accepting that, " Look, this is a part of me. This is not something that makes me weak. As a matter of fact, I'm stronger because of it." And ultimately I think that was one of the reasons why my first advocacy brand was calling myself "the world's strongest person with narcolepsy" because I wanted to show that I was strong in spite of having this condition. I'm still a man. And one of the challenges too, is that it impacts relationships. It impacts my ability to parent. It impacts intimacy. Yes. All of these things that [00:15:00] sometimes. Gentlemen are very afraid to talk about.
[00:15:02] Matt Hornsnell: Yes. Because again, it's a perceived weakness. But again, it's "if not me, then who?" And what I'd love to see is other advocates who are men coming out and talking about it. As they feel comfortable. You've got Josh Andrews, who's out there. You've got a number of great men who are out there talking about this condition and how it impacts them. Different cultures, different races, different genders. We all have common threads but it is helpful to see people who reflect and represent your own lived experience. And I think that's one of the things why it's so important that we have diversity in storytellers.
[00:15:33] Kerly: Yeah, a hundred percent. 
[00:15:34] Kerly: Diversity in storytelling.
[00:15:36] Iris: Yeah, because we have a few stats we managed to see from the podcast. And it's interesting that you said obviously you had more of an opening 'cause there were so few men and I think our top episodes for like over nearly two years now, Matt, top five: guys. 
[00:15:51] Iris: Yeah, just the men stories.
[00:15:53] Kerly: Don't worry about whether you're judging yourself that you're not a good storyteller. Or they would say, oh, my English is not very good. I said, no one cares about that. Don't [00:16:00] worry. Just share. Just the story, the best that you can.
[00:16:03] Kerly: 'Cause people are just, they're craving for it 'cause there's no one out there's doing it and they want to hear, so they will sit and listen intently as they can, and, even if you're struggling with the English, that won't matter to them. They'll still get the gist of the story that you tell and they're happy that you tried.
[00:16:19] Kerly: 'Cause you know? That's all that matters. 
[00:16:21] Matt Hornsnell: Yeah. And the difference plays out in terms of professional conferences as well. We have a number of sessions that were accepted at Sleep that were by advocate authors. And I've had a chance to have two sessions in a row accepted at Sleep that I authored.
[00:16:34] Matt Hornsnell: But again. Outside of myself, maybe Dr. Lewis Ortiz who's a PWN, and a physician as well, n ot a lot of guys at the professional conferences talking about their experiences too. And so again, I think physicians also are very interested. Sleep researchers, psychologists want to know too about guys.
[00:16:50] Matt Hornsnell: I had a number of physicians come up to me and talk about, " Hey, I've got a patient who's experiencing trouble in intimacy. What resources are available?" And the reality is there's not resources that are available. And that's [00:17:00] something that I'm working on in terms, of, addressing an unmet need.
[00:17:02] Matt Hornsnell: Unfortunately, there's not resources for women either in that regard. Yeah. And again I think there's better groups in terms of helping women connect with women. Wake Up Narcolepsy has a great pregnancy and parenting group that's just for women. And I think it's great that we hold those spaces sacred, but there's not, a men's group, so to speak at least at this iteration for narcolepsy alone.
 
[00:17:32] Iris: Yeah. And just actually going into that, I know that you wrote an article about sexual health. 
[00:17:36] Kerly: I thought this is gonna be such a great conversation.
[00:17:39] Kerly: And then people were quiet and I was like, "What is happening here? Why will not people engage in this as if it wasn't happening to them?" And it was.
[00:17:46] Matt Hornsnell: And it's just tough to acknowledge and again, you talk about one of the things that males identify with is virility, potency, strength, all of those things come into play and, I loved writing that article. It was inspired ultimately by what Julie wrote in her book: "Wide Awake and Dreaming."
[00:17:58] Matt Hornsnell: 'Cause she talked about her own [00:18:00] experiences with intimacy and cataplexy. And, I am doing some work behind the scenes to get some research and surveys going. To discuss and explore this further but the thing is, even though it didn't develop as much conversation at that time, at least it planted a seed. People were talking; they're aware that other men were experiencing this issue.
[00:18:15] Iris: No, that was huge for me, Matt, I'm not gonna lie, because I have. Cataplexy, and I think you introduced me, to the actual words, " orgasmal cataplexy."
[00:18:23] Kerly: Mm-hmm. 
[00:18:25] Matt Hornsnell: Yeah. 
[00:18:25] Iris: And as soon as I read it, I was like, " Oh my God, is that what's been happening to me?" So trust me, it helps so much. At least for me, it was amazing. 
[00:18:33] Matt Hornsnell: I love hearing that feedback because it's a taboo topic culturally in the US. We can't talk about this topic because it's about sex and the reality is that's an important topic, and because people are afraid to talk about it, that means it's all the more important for us to have conversations about it.
[00:18:46] Matt Hornsnell: Because if one person can walk away from these conversations and go, oh wait, I'm not the only person who's dealing with challenges in this regard. And, we're talking about physiological responses, emotional responses, things that can also be addressed with counseling [00:19:00] in healthy relationships with communication with your partner.
[00:19:02] Matt Hornsnell: Those are all things that I think unless you start talking about it, people are gonna hide away and they're gonna withdraw, and the physician I had a conversation with at Sleep was having trouble experiencing connection and intimacy and online dating.
[00:19:13] Matt Hornsnell: I was like that's because it's foreign. You're trying to be intimate with somebody and emotionally vulnerable when you have a condition that, really teeters on, a loss of muscle tone within emotional response. And so it does make sense that's impactful. 
[00:19:24] Iris: Yeah, exactly.
[00:19:25] Iris: I've shared, my experience with a lot of people, I still have not met anybody that has that said that they've experienced the same with me. and I hope to, so I will hopefully share, my story. Yeah. One day. But just that part of it.
[00:19:37] Iris: But I think honestly you are the perfect kind of male advocate because I think you still have that male persona I don't wanna, offend anybody, and yet, you are very secure in your sexuality, in your emotions, in, expressing them, and that's very rare, I don't know many guys like that. 
[00:19:53] Matt Hornsnell: This younger generation is stepping forward and learning to be more comfortable. I've had great conversations with partners of [00:20:00] PWN who reached out and they were very open and vulnerable about their own experiences and challenges and I was like, holy shit, excuse the language, but you are actually doing great.
[00:20:08] Matt Hornsnell: You're advocating for what you need in a relationship. That gives me hope. I'm gonna be honest, the best thing that I ever did was start going to counseling at a very young age, even before I knew about narcolepsy. I was talking to a counselor for my own challenges: psychologically, mental health wise, all came into play and it's something that's still a very important part of my life. I see a counselor every two to three weeks, depending on, scheduling and availability. Talking one-on-one is very helpful, but it also helps you learn to be comfortable talking about that.
[00:20:31] Matt Hornsnell: The groups also helped a lot too, because I can't facilitate groups if I don't share my own experiences or be vulnerable, and open .A lot of times people need to see that before they can say," oh, I'm gonna talk about this" because it's hard. And so in order to encourage, we have to, open up the curtains a little bit and be a little bit vulnerable and say, look, this is what's going on with me.
[00:20:50] Matt Hornsnell: And some of it is embarrassing. I don't, necessarily want to talk about a lot of this stuff. But again, somebody's gotta do it. And if I'm not gonna do it, I can't expect other people to do the same. 
[00:20:59] Kerly: I think it's [00:21:00] getting to that point where people don't feel judged.
[00:21:02] Kerly: If you don't feel judged, it's easier. For you to share. I remember asking once, " Where are all the men in the Facebook group?" I just wanted to see if they would respond. And then they did, just started popping up and I was like, "Oh my God!" And they're like, "We're here, we're here!" And I was like, "So why don't you not ever speak?"
[00:21:16] Kerly: And they go, "Oh, the women are saying everything so there's nothing left for us to say." And they went back quiet. Couldn't believe how many I counted. I was like, wow, they're there!
[00:21:25] Matt Hornsnell: Yeah. And again, they're there.
[00:21:28] Matt Hornsnell: They're there and they're listening and they're observing. And to your point, you guys shared some great stats that without telling other people's stats that I've heard, male stories do represent very well in terms of getting traction, getting views, getting impressions.
[00:21:41] Matt Hornsnell: If you look at a percentage though, it's still women storytellers are carrying the lion's share of the impressions. It's just that you see when a men shares, you see a popup. 'Cause yeah, there's again, people are like, oh, that guy looks like me. He has a beard, he's a dad. And that's another thing too, is being a dad, I think is an element of my story that [00:22:00] I think helps translate for a lot of people.
[00:22:02] Matt Hornsnell: We had a great session. When I say we, my wife and I did a session at Hypersomnia Foundation's Beyond Sleepy Event, and we talked about relationship troubles and relationship struggles and successes. And it was a very invested conversation and you don't have to be a parent if you don't wanna be a parent, but I did want people to know being a parent can be very rewarding and enriching.
[00:22:21] Matt Hornsnell: It's also terrifying. 
[00:22:22] Iris: Yeah.
[00:22:22] Matt Hornsnell: But my kids are the reason I get out of bed in the morning. And so again, parenthood also can look different for different people. You can adopt, you can, you can be a great, maternal figure. You can be an aunt, you can be an uncle.
[00:22:33] Matt Hornsnell: There's a lot of ways that you can be involved
[00:22:35] Kerly: yeah. I was in the break room I hadn't thought of it in that way. it was like more sort of tunnel vision of with the parenting, so that was quite interesting to think, "Oh yeah. even as an aunt, are still, parenting just in a different way.
[00:22:47] Iris: Yeah. I will literally say this is how I've always seen Kerly as the people she, takes care of, I see the people you help as your kids.
[00:22:54] Iris: Like I literally do, cause she takes so much care of everybody around her, that you have a lot [00:23:00] of kids,
[00:23:00] Kerly: I like what you said earlier About boundaries.
[00:23:02] Kerly: I had to learn the hardware about that when we started, because I was just like, anyone can call me whenever they want and maybe, obviously I shouldn't have said that. And then people would call me like three o'clock in the morning, my time from the states and in a crisis and expect me to talk to them.
[00:23:17] Kerly: And everything like that became very overwhelming. Even recently we had some guy in Algeria who was just always texting me and I was like, the whole point of having the group is for you to put your problem in the open so that everyone can give you advice, not just singling one particular person.
[00:23:32] Matt Hornsnell: And I think it's hard for a lot of people to, 'cause they connect, they'll have a one-on-one connection with you Kerly. And so they want to come to you. But I always try to remind folks, if I don't, 'cause people have gotten upset with me before. I know people have gotten upset with other prominent figures in the space.
[00:23:45] Matt Hornsnell: I reached out to so-and-so and they didn't respond. You gotta give somebody grace because they're also living with a sleep disorder and you're expecting them to engage and meet you. More than halfway. You want them to give Yeah. Freely of their time and energy, but you also don't know what they're going through at the [00:24:00] same time.
[00:24:00] Matt Hornsnell: And so again, extending grace to the person you're reaching out to, understanding that they may not be able to get to you at that moment. And it was incredibly tough and I'm glad you said that Kerly. 'cause it's incredibly tough to me not want to reach back out. Right away.
[00:24:12] Matt Hornsnell: It's oh my God, someone's in a crisis. And then I would look over and I'd be texting. And my wife would be like, who are you messaging at 11 o'clock? And I was like, 
[00:24:20] Matt Hornsnell: Alright, 
[00:24:20] Matt Hornsnell: put my phone down. You're right. That doesn't need to happen right now. And so again, setting, healthy boundaries, with yourself, but also with your community is an important part of building a healthy network. 
[00:24:31] Kerly: I just wanna say you really helped me with something when we were going through that because we had someone on who I'm very.
[00:24:37] Kerly: As a matter of fact, when I speak about things and they were newly diagnosed and I didn't wanna sugarcoat what the future was, and so I just said it. And then some months later they came on and they said that I was, I made them suicidal and I took that really to heart and it was bothering me for for weeks.
[00:24:54] Kerly: And Iris had to say to me like, you. Yeah, you need to have boundaries with this person. You can't be doing [00:25:00] that. And their mental health is not caused by you. And my sister was like, that's something that they need to deal with their therapist or something, not projecting that onto you.
[00:25:08] Kerly: And that was, it's a lot of responsibility. Yeah. That was tough. 
[00:25:11] Iris: Yes. I think that's why, for me at least, it was like, me, I think me and Kerly we wanted to do this series, especially because there isn't anything out there. When I went through my little burnout and I think I stepped away from, Naps For Life for about six months.
[00:25:26] Iris: Yeah. It was a long time because I didn't realize. how much it was getting to me and that it was okay to step away. It was okay to be like, Hey, I need a break, yeah. Because people do forget that you also have the condition and you, and not that you mostly, usually advocacy is volunteer work, so you are already having a career and then an advocacy on top of the career, which was, my case.
[00:25:48] Iris: I think it's important for people to also understand what you were saying about your wife it really relates because at least I know in my case when I dove into advocacy, I dove in [00:26:00] to advocacy and it felt like what I was doing was so important that I, anything else was like not as important and to find the balance.
[00:26:10] Iris: How did you manage that? did your wife help a lot with that? 
[00:26:12] Matt Hornsnell: She did. Again. Do. There's expressions. Like I, I felt like I was a a human doing, not a human being like I was constantly trying to do for others. And that was great and it helped me through a lot of times, but it was also a way for me to distract from my own stuff.
[00:26:25] Matt Hornsnell: 'Cause if I'm helping you, I don't have to look at me. And one thing too, and listening to you talk, Iris, it sounds like you came to this. Kind of determination as well. You can't take care of other people if you're not healthy yourself. And so until you prioritize your own mental health and your own wellbeing, you can't give freely of your time and energy and I think.
[00:26:44] Matt Hornsnell: For people who facilitate groups for leaders in this space, it is good that they take some time to go do something that's away from, it's easy to wrap your identity around being a helpful person, but and being involved in advocacy and lord knows. I've gone [00:27:00] on to make a career out of it in certain aspects in terms of consulting, but I still have to take a step back and that, if you look at my social media posting frequency, it's gone down a lot because I'm trying to be more involved at the house, live in the moment.
[00:27:14] Matt Hornsnell: Have a nice separation between, and another challenge with social media too, is. You wanna put on this best face, you don't always share the struggle. And that's why I love when I see someone write a post that's actually this is hard, raw, it's not, they're not just saying, this is what I did.
[00:27:29] Matt Hornsnell: Look how Yeah. Look how great it went. And talk about how hard it was to get up the mountain. Don't just take a picture of you on top of the mountain. And yes. Seeing, for me, sometimes I just need to take a step back and, again, it, you talked a little bit about.
[00:27:41] Matt Hornsnell: People that you impact being like your kids? For me, the folks that I've helped along my journey are like off my advocacy family tree. I love watching them grow and succeed too. That's a highlight. If I see someone who I met early on in their journey, go on and succeed that's just a joyful experience.
[00:27:58] Matt Hornsnell: And again, [00:28:00] that's. Yeah, indirectly me helping tell a story because I empowered somebody else to do the same. And sometimes that means I have to talk less or, not take an opportunity or encourage someone else to take an opportunity because My story has been told a lot, and I love telling my story, but I also love what you guys are doing, which is empowering young storytellers.
[00:28:17] Matt Hornsnell: And people who haven't had a chance to share their story, to go out and do that. When you started to tell me about your vision for Narcolepsy Navigators, I was like, I love this because again, Matt's talked a lot. And Lord knows I don't like talking.
[00:28:30] Matt Hornsnell: But I love hearing people who haven't told their story yet, get a chance to have that platform to feel the reinforcement. And the positivity and the empowerment that comes from that. And you guys are going out there and you're planting a whole lot of seeds and you're gonna see a lot of those seeds grow and blossom.
[00:28:47] Matt Hornsnell: People who came on that, this was their first chance. They're gonna go on and tell stories at conferences, they're gonna, have opportunities to spread and grow. And so again, circling back to what we started off with, you guys are doing a great job here in the, in this space, and I'm proud of what you guys are [00:29:00] doing.
[00:29:00] Matt Hornsnell: Thank you, Matt. 
[00:29:00] Iris: Thank you. And I think for me as well, we've like I'm, I met you, I think 2020 as well, right at the beginning when we were doing, I was doing writing Voices and then we started the World and Narcolepsy Committee with Project Sleep and yeah, I think definitely two of the biggest people influences in my journey's been you and Julie.
[00:29:18] Iris: And that's something that I think me and Kerly. We wanted to continue. We wanted to be able to multiply it, but like on a level, but also very much highlight that. Advocates also need advocates, and we need somebody, we also need to. Be taken care of and have somebody championing us and having our support so that we can support others.
[00:29:42] Iris: And I think that's an important story to tell as well, that I hadn't heard from you. So thank you for sharing that. 
[00:29:48] Kerly: It's almost....
[00:29:49] Iris: I have one more question. Sorry. 
[00:29:50] Iris: Can I?
[00:29:51] Kerly: No I lost the last, it's what was it? I can say, oh no, it's gone. Brain fog.
[00:29:57] Iris: Oh, gone. Gone. So sorry.
[00:29:59] Kerly: All gone [00:30:00] now. 
[00:30:00] Kerly: They're absolutely gone.
[00:30:01] Kerly: Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
*Yawning Transition*
[00:30:18] Iris: My last question was going to be, Who is your biggest advocate, Matt?
[00:30:23] Matt Hornsnell: I'm gonna name a couple of people because it's different people at different times. My. My wife is a tremendous influence on my advocacy. I was a single dad. I was doing maintenance work. When we met and I was not happy. I was cranky, I was miserable. I was, volunteering, doing the work that I was doing in this space.
[00:30:38] Matt Hornsnell: But she looked at me one day, she was like, Matt you're miserable. What would it take for you to run with this advocacy journey? How could you monetize that? How long would that take? And I was like, six months, maybe I could come up with something. And within seven months I had a job offer to do some social listening projects.
[00:30:55] Matt Hornsnell: Wow. But she empowered me and gave me the opportunity and, I. I love sharing that story, [00:31:00] but also the, my kids, they've had to step up and take on, my adult kids now, but, watch the house while I go on trips to help talk about these conditions. Across the country or different aspects.
[00:31:11] Matt Hornsnell: And then I've got a little brother who, always is willing to bust my chops in the best way, but also encourage me in every step. And so I think, again, it's been a lot of people my, partner. Has had a direct impact on me being able to be a storyteller. And so anytime you see me on stage, it's a direct result of her empowering me.
[00:31:29] Matt Hornsnell: And I did wanna leave, you guys with kind of one parting thought. One of my big goals has been to transform what I wanted to be as an advocate. Telling a story's great, but there's also this whole frontier of. Advocate authors. So advocates contributing to scientific literature.
[00:31:46] Matt Hornsnell: You can do that in the form of participating in surveys, but you can also help guide and direct some of those surveys. You guys are accumulating a lot of data from the work that you're doing already, so figuring out how that you can take that and add it to [00:32:00] scientific discourse is huge because we're at a place now.
[00:32:03] Matt Hornsnell: Physicians, researchers, they're very willing to hear what advocates have to say. I spoke between the past conference and Sleep, I think if you look at total people in the two presentations, what was close to about 550 folks that were in the audience that, that I talked to.
[00:32:18] Matt Hornsnell: I was on the stage with Dr. Igneo. I was on the stage with a number of experts and I was an equal. And so again, how can you take your own advocacy and. Change it or add your own unique flare to it. If you have a background in science, how could you contribute? You guys are, Are overseas in a unique position where you can use your own experiences in your country to really help shape the future of research. Unfortunately the US research is under fire. We're still able to do some, but government research is tough, but oh yeah. That could open doors for you guys overseas to help lead that conversation.
[00:32:50] Matt Hornsnell: And so again, I just encourage everybody to. To learn to share their voice, not be bashful about it. And, any kind of advocacy is a positive step forward, particularly if you're using [00:33:00] science-based approaches and, pointing back to the resources that are available.
[00:33:04] Iris: That's amazing. Thank you so much, mark.
[00:33:07] Kerly: Thank you. 
[00:33:07] Matt Hornsnell: Yeah. I appreciate you ladies, and again, so proud of what you guys are doing. 
[00:33:11] Kerly: Thanks. 
[00:33:12] Matt Hornsnell: Sweet. 
[00:33:13] Kerly: Thank you. Thank you. Oh, 
[00:33:14] Matt Hornsnell: have a great rest of your day. Wait, 
[00:33:15] Kerly: Matt, don't go yet. You too. 
[00:33:16] Matt Hornsnell: Don't go. You have to 
[00:33:18] Kerly: wait for a few seconds. Yeah. So we're just gonna say, happy, napping everyone. And then you have to wait for two minutes so it loads from complete two hours. Yeah. Okay.
[00:33:27] Kerly: Happy napping everyone. 
[00:33:29] Matt Hornsnell: Okay. All right. Say that one more time. 
[00:33:30] Kerly: 1, 2, 3. 
[00:33:31] Matt Hornsnell: Okay. So say, alright. 
[00:33:33] Kerly: 1, 2, 3. 
[00:33:34] Matt Hornsnell: Happy. N everyone. 
[00:33:36] Kerly: Happy N Okay. Wait. 
[00:33:40] Kerly: Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share [00:34:00] the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.