From Pamphlet to Platform: How One Diagnosis Led to a Revolutionary Resource for the Low Vision Community
Today I hear from Nick Mendler about how his story of low vision led him to start the Eye Spy Foundation and its flagship project eyespy.org. Nick’s background as a technologist was the perfect foundation for him to fill in the gap between the resources available to the low vision community and the people who need them.
I recently had the privilege of interviewing Nick Mendler, president of the Eye Spy Foundation, for an episode of Insight Out. Nick's story perfectly illustrates how a challenging personal experience can become the catalyst for meaningful change in our community.
A Diagnosis at 16
Nick's journey began in 1998 during what should have been a routine eye appointment in Cincinnati, Ohio. At just 16 years old, he received a life-altering diagnosis: retinitis pigmentosa, a rare eye disease affecting one in 4,000 people. The doctor's delivery was clinical and stark – there was no cure, no clinical trials, and Nick's peripheral and night vision would deteriorate first, eventually followed by his central vision.
What struck me most about Nick's story was what happened next. The doctor handed him and his mother a pamphlet about low vision, scheduled a follow-up appointment for six months later, and essentially sent them on their way. As Nick put it, "that story of me, 16 years old in 1998 is still the story that's happening right now in 2025."
The Technology Career Path
Despite his diagnosis, Nick continued on a relatively typical trajectory through college and into his career. He studied public relations at Jacksonville University, landed an internship with the PGA Tour that turned into a full-time position, and gradually gravitated toward technology and project management. His vision loss progressed slowly, allowing him to maintain his independence while making gradual accommodations like larger text and increased screen contrast.
It wasn't until college that Nick really began noticing the impact of his condition, particularly with night vision challenges. As he shared, the progression has continued over the decades, but his slow progression has allowed him to adapt gradually while maintaining many activities, including driving.
The Lightbulb Moment
The genesis of Eye Spy Foundation came during Nick's involvement with the Foundation Fighting Blindness Denver chapter around 2015-2016. At one of their symposiums, he was amazed by the breadth of resources available – from accessible technology to guide dog schools, mobility training, vocational rehabilitation, and cutting-edge research presentations.
Sitting in that audience, listening to presentations about optogenetics and gene therapy, Nick had a profound realization: "There has to be some kind of website I can go to that has everything that I've seen here today." When he went home and searched, he couldn't find such a comprehensive resource.
This took him back to his 16-year-old self receiving that inadequate pamphlet. He imagined how different his journey might have been if he could have left the doctor's office with access to a comprehensive platform connecting him to all available resources and, crucially, to other people who understood his experience.
Building Eye Spy Foundation
Nick launched the Eye Spy Foundation as a 501(c)(3) nonprofit with a straightforward mission: to create a better digital future for the blind and low vision community. The flagship website, eyespy.org, now houses over 900 resources across the United States.
But Nick quickly realized that having a comprehensive directory, while valuable, wasn't enough. As he explained, "You kind of get this paralysis by analysis. There's too much information. You're stuck or you have no information and you're stuck." The human connection was missing.
The Navigator Concept
This insight led to what I believe is the most innovative aspect of Eye Spy Foundation: the navigator program. Nick envisions three levels of navigation:
The website itself - allowing self-directed exploration of resources
Human navigators - people from the blind and low vision community who can provide that crucial human connection and local expertise
Future AI integration - thoughtfully designed to complement, not replace, human interaction
The navigator concept addresses something we all know but don't always acknowledge: "Humans will always need humans." When you're facing a life-changing diagnosis, you need more than information – you need someone who truly understands what you're going through.
A City-by-City Approach
Rather than trying to tackle everything at once, Nick is taking a strategic city-by-city approach, starting with Jacksonville, Florida as the pilot. Each city has its own unique resource landscape, transportation systems, cultural considerations, and community characteristics. By thoroughly developing the Jacksonville model in 2025, the foundation aims to create a replicable blueprint for expansion to other cities in 2026.
This approach recognizes that while vision loss is universal, the resources and support systems are intensely local. A navigator in Jacksonville will know not just about the national organizations, but also about the specific paratransit application process, the best accessible restaurants, local adaptive sports programs, and which venues are most welcoming to people with vision loss.
Serving the Broader Community
Eye Spy Foundation serves what Nick calls the "three A's": the affected (people with vision loss), advocates (family members, friends, colleagues), and academics/professionals (doctors, genetic counselors, therapists, vocational rehabilitation specialists, and others who serve our community).
This comprehensive approach acknowledges that vision loss impacts entire networks of people, not just the individual with the diagnosis. Family dynamics change, workplace relationships shift, and everyone in the support network needs resources and understanding.
Looking Forward
Nick's long-term vision is ambitious but grounded: he wants Eye Spy Foundation to become the natural starting point for anyone beginning their low vision journey, anywhere in the world. Rather than replacing existing services, the platform would serve as the bridge connecting people to their local resources while also providing access to the broader community through podcasts, social media creators, apps, clinical trial information, and peer connections.
Lessons from Nick's Story
What resonates most with me about Nick's story is how he transformed a frustrating personal experience into a solution that serves thousands. His 16-year-old self, walking out of that doctor's office with nothing but a pamphlet, became the inspiration for a platform that could revolutionize how people access support and resources after a vision loss diagnosis.
Nick's journey also illustrates the slow, often unpredictable nature of progressive vision conditions. His ability to continue driving and maintain independence while gradually adapting shows that vision loss exists on a spectrum, and our support systems need to accommodate that reality.
Getting Involved
If you're interested in learning more about Eye Spy Foundation or connecting with Nick, you can visit eyespy.org or eyespy.org/talks for his speaking appearances and contact information. As the foundation prepares for major fundraising events in September and the launch of their Jacksonville pilot program, they're always looking for community input and support.
Nick's story reminds us that sometimes the most powerful solutions come from the intersection of personal experience and professional expertise. His background in technology, combined with his lived experience of progressive vision loss, positioned him uniquely to see what was missing and to build something transformative.
As I told Nick at the end of our conversation, he's building something far beyond a pamphlet – he's building a bundle of hope. And in our community, hope backed by comprehensive resources and human connection is exactly what we need.
This blog post is based on my interview with Nick Mendler on the inSight Out podcast. To hear our full conversation, including more details about Nick's personal journey and the technical aspects of building Eye Spy Foundation, listen to the complete episode.
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Matthew talks with Nick Mendler about his work to fill the gaps he encountered after his vision loss diagnosis. From practical problem-solving to the thirst for human connection, Nick aims to create a resource-packed one-stop-shop for the blind and low-vision community through https://eyespy.org/.
Nick Mendler is a technologist with low vision based in Jacksonville, Florida. He leads the Eye Spy Foundation in its efforts to create a better digital future for the blind and low-vision community. Learn more about the Foundation at http://www.eyespy.org/talks and reach Nick at nick@eyespy.org.
ABOUT inSight Out
inSight Out is your podcast home for living well with vision loss. Host Matthew Reeves (LPC CRC NCC) is a legally-blind psychotherapist and rehabilitation counselor specializing in helping people thrive while living with disability. Matthew is licensed in Georgia and is a nationally certified rehabilitation counselor.
Please be sure to subscribe to catch every episode. And remember to share the show with others in the blind and low-vision community!
CONNECT WITH US
Podcast Home: https://insightoutpod.com
Talk to Us: https://speakpipe.com/insightoutpod
Email: mailto:insightoutpod@integralmhs.com
Watch on YouTube (with transcripts): youtube.com/@insightoutpod
Feed: https://www.insightoutpod.com/feed.xml
Reddit Community: https://www.reddit.com/r/inSightOut/
Social Media Handle: @insightoutpod
be sure to subscribe to catch every episode. And remember to share the show with others in the blind and low-vision community!
In this first episode, I’ll introduce myself and the inSight Out podcast…who I am, why I decided to create this show, and what I hope inSight Out will offer to the low and no vision community. So, unlike other episodes where I will help you get to know a variety of guests, this episode asks my longtime friend to help me tell my story to you, my new audience.
ABOUT THE PODCAST
inSight Out is your podcast home for living well with vision loss. Host Matthew Reeves (LPC CRC NCC) is a legally-blind psychotherapist and rehabilitation counselor specializing in helping people thrive while living with disability. Matthew is licensed in Georgia and is a nationally certified rehabilitation counselor.
CONNECT WITH US
Podcast Home: https://insightoutpod.com
Talk to Us: https://speakpipe.com/insightoutpod
Email: mailto:insightoutpod@integralmhs.com
Watch on YouTube (with transcripts): youtube.com/@insightoutpod
Reddit Community: https://www.reddit.com/r/inSightOut/
Social Media Handle: @insightoutpod
©Integral Mental Health Services, LLC
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The following transcript is AI generated and likely contains errors.
COLD OPEN
[00:00:00]
Nick Mendler: But I think for me, that the, the root of what Eye Spy Foundation was started in and, and eyespy.org goes back to that 16-year-old and, and really that, that gap of, "Great, um,, I'm diagnosed or I had a safety accident or, you know, I just, I had vision loss from when I was a child." There's so many different scenarios. Um, the question is where do you go to start your journey? Um, what's your one stop shop? And that's eyespy.org.
INTRO
Matthew Reeves: You're listening to Insight Out a podcast about living well with low vision. Maybe you're feeling confused, scared, isolated, or disheartened about a recent vision loss diagnosis, or [00:01:00] maybe you've been managing your vision loss for a while and now you want to hear from others about how to continue growing and thriving. Insight Out is your supportive space to find healthy and impactful tools to build and maintain a truly rich and gratifying life with low or no vision.
I'm Matthew Reeves. I'm a legally blind psychotherapist and rehabilitation counselor. I specialize in helping people adjust to disability through my practice, integral Mental Health Services in Atlanta, Georgia. I'm really glad you're listening.
Please subscribe so you don't miss an episode, and let others in the low vision community know about the podcast so the word can spread to those who might find it helpful. And now on with today's discussion.
TOPIC INTRO
Alex: this is placeholder for generic voiceover.
INTERVIEW
Matthew Reeves: Thank you Nick, for being here today. Uh, I was excited to meet you several months ago, uh, through the Foundation Fighting Blindness. and we talked [00:02:00] about how this podcast was in the, uh, planning stages, and you were, uh, mentioning that you had some. Some resources your arena that, uh, might make a good fit here to, to let this audience know about.
So, um, why don't you start by giving me and, and the listeners a sense of, kind of your story related to low vision, uh, and then we can take it from there.
Nick Mendler: Yeah. Thanks Matt. Um, appreciate you having me on as one of your first couple guests here for the, for the new podcast. Exciting stuff. Um, yeah, so my name is Nick Midler. I am the president of the I Spy Foundation. Um, I started the foundation about two years ago, uh, becoming up on our third year in February.
Um. So as far as my low vision journey, um, yeah, I guess I'll just kinda start from the beginning here. So, uh, I grew up in, uh, Cincinnati, Ohio, and, uh, at the age of 16, mom and I [00:03:00] went to, uh, just a normal routine kind of eye visit. Um. With our, um, eye doctor and, uh, went through all of the normal tests, um, got some retinal scans and the doctor, um, came back and, and sat us down and said, Hey, I just wanted to tell you that I believe that you have, uh, this rare eye disease called retinitis pigmentosa.
And essentially what that means is, um, your peripheral vision and, and your night vision, uh, will be taken out first and, and then eventually your, your central vision. And, you know, there's currently no cure. Um, there's currently no clinical trials. Um, and, you know, that's, that's pretty much what it is. Um, this was in 1998, so it's been quite a, quite a bit.
But, um,
Matthew Reeves: You didn't
Nick Mendler: you know, that.
Matthew Reeves: or any, like you weren't there for any particular problem, and this just came from completely out of the blue.
Nick Mendler: Yeah, so it was just a, [00:04:00] a normal routine, um, visit and, um, you know, my, um, family member has it as well, but, um, there was no real, you know, I was playing baseball. I was, you know, just got my driver's license, you know, doing all of the, the normal high school stuff. Um. Know, excited about that. And,
Matthew Reeves: Yeah.
Nick Mendler: um, they asked some questions about, you know, bumping into things and, and some of those types of questions, and I said, yeah, I guess so.
I never really thought about it. Um, but obviously the, the retinal scans kinda showed differently. And, you know, for, for me, the, you know, the biggest thing was at the end when, you know, kind of gave us the diagnosis and, and said, you know, he, well, there's nothing really we can do. Um, here's a pamphlet about low vision and what that means for your life as a 16-year-old with my mom.
And, you know, we'll, we'll book an appointment for six months and, and we'll see you then and. You know, I, I think that that, [00:05:00] you know, was really the beginning of my low vision journey. Um, I've been very fortunate that my progression's been, been very slow. Um, so I am able to drive still and do a lot of the things that I feel, uh, very blessed to do.
But, uh, the thing that's always kind of bothered me was that story, you know, of, of me, 16 years old in 1998 is, is still the story that's happening right now in 2025 where, um. Yeah, I think that what I mean is that you get these diagnoses or something happens in your life or you know, whatever it may be that you kinda walk into to low vision, the low vision lifestyle.
And there, there really isn't a handoff as to, you know, here's how you live your life, or here are some ways to go, uh, live your life or to get some help. Um, other than, you know, saying one organization or another. Uh, and you know, to me that's a, that's a, that's a [00:06:00] really big cost, um, for somebody when they're trying to, to sort out what are my next steps, you know, how do I, how do I work through this and, and what should I expect?
Um, so you know that that was
Matthew Reeves: it seems
Nick Mendler: Go ahead.
Matthew Reeves: uh, amazing that you were handed pamphlet. that was it. As if that's
Nick Mendler: Yeah.
Matthew Reeves: to, to help you with such a massive life transition. Like you get a pamphlet and that's all, and then see me in six months. What, how did, how, what was that like for you? And, and I know that story is unfortunately really common,
Nick Mendler: Mm-hmm.
Matthew Reeves: everybody takes it differently. What was it like for you at 16 when you, when you got that news?
Nick Mendler: Yeah, I think for that, for me back then, um, yeah, it was kind of normal in the nineties, you know, to get pamphlets and things like that. The, the web and, and things were new, but, um. I, I didn't know what to think, you know, it's like, well, am I gonna be able to drive, you know, [00:07:00] what's dating gonna be like? You know, all of the different life circumstances that a 16-year-old thinks about.
I think that's where my brain initially, can I play baseball? You know, I was playing baseball at the time and, um, you know, how is that going to affect my life? But I think there was a part of me that was less like, well, I, I guess I have this thing and, you know, my mom supports me, you know, supported me.
Then, um. A hundred percent, um, and would do anything for me, but it, there wasn't really answers as to, well, what does it exactly mean to have a rare diagnosis and, uh, this thing that's going to change your eyesight? Um, didn't really, didn't really have any answers, was kind of just, uh, I guess I'll just go about my life.
So, um, it was a little bit, you know, throws you back a little bit For sure.
Matthew Reeves: Yeah. Was that, I mean, it, it sounds like your first response as a teenager was just keep going. Just keep, keep the normal, uh, pace of life, keep the normal [00:08:00] activities and. Kind of hope for, I guess, I guess is, was it a hope for the best or was it a denial? Like what, how, looking back on it, I, I know you probably didn't have a sense of it at the time, but back on it, what do you think was the, the strategy you were employing to kind of manage this pretty earth shattering news?
Nick Mendler: Um, yeah, I mean, the first, the first thought was like, I guess I gotta eat glasses. You know, I mean the, a very basic thought, um, which, you know, you come across a lot of people when you say that you have, you know, an eye condition. They're just like, well just go get contacts. And, and that's not really an answer for, for what I have.
Um. But again, at 16, you know, you're not deep into, you know, science and, and the retina and all, all sorts of, um, different things like that. So, yeah, I, I, I didn't really know how to take it, you know, again, there's loving support that, you know, mom was, was just like, Hey, just, just keep doing what you're doing [00:09:00] and, and we're gonna work through this together.
And obviously we'll go see the doctor in six months. Um. But for us, that was pretty much, that was pretty much it. And then, you know, the, the site was still set on college and doing the normal kind of thing. Um, I guess that, that was really the extent of it at
Matthew Reeves: Yeah.
Nick Mendler: point.
Matthew Reeves: Yeah. At what point, uh, did the, did the diagnosis turn from something abstract
Nick Mendler: I,
Matthew Reeves: real where it was where you noticed it was actually impacting your life?
Nick Mendler: um, you know. It's different for everybody, obviously. And for me it's been a slow progression. Um, you know, I would say, you know, definitely in college, so fast forward maybe, I don't know, uh, six or seven years, maybe 5, 6, 7 years, somewhere in there, um, where, you know, the night vision was kind of the first part of it where you really start to notice that, hey, I'm not seeing things the way that other people are seeing things.
Matthew Reeves: Hmm.
Nick Mendler: Um. [00:10:00] I think that that was, was kind of the first part and obviously really throws you off when you get in certain situations and, um, you know, they can't really specify what my, you know, particular loss, whether it be peripheral or night vision. Is going to be in a certain timeframe. 'cause again, everybody's different.
But, um, yeah, I mean I, I've definitely seen it, you know, we're, we're many years away from, from 1998, but, um, so there has been a lot more progression. But like I said, I, um, I think it probably about college and then, you know, saw another progression in young professional life, more or less, and kind of mid-career as well.
And, I don't know, three or four stages since then.
Matthew Reeves: Gotcha. Gotcha. And uh, I know, I think you, you told me beforehand that you got into technology as a career. Did that, was that a trajectory that started in college and I'm, I'm curious about. The impact that vision [00:11:00] loss may have had on, on the career path and the academics and, and all of that.
Nick Mendler: Yeah. Uh, well, as far as the career path, so I came down to, uh, Jacksonville, Florida, which is where I am now, uh, for, for college and. Just did the normal college thing. Uh, graduated with a, with a public relations degree, um, in communications, which I've never used, uh, really once other than internships. Um, but you know, that, uh, I was very fortunate that my internship turned into a job with the PGA tour, um, which is, uh, located here in, in Jacksonville.
Um. And yeah, I, I, it's kind of a, a winding road that we all take in our, uh, different paths. But, um, you know, at the time when I came out there was just a lot of movement in digital and web things, and I naturally kind of gravitated to that. And, uh, the CTO at the time, you know, saw that I had promised there and, um, you [00:12:00] know, that just kind of led me into project management and website development and, and many other things.
Um. So as far as that's concerned, you know, that was kind of where the jumping off point was for me. Um, but I think as far as like the, the vision loss and things like that, I haven't noticed it, uh, too much, you know, in my early career. Um, you know, now I, I'm definitely, uh, zooming in on things a little bit more, having a little bit larger text, um, you know, making sure that things are, have contrast for, for me.
Um. Is is super helpful. Um, and then my, you know, iPhone settings are very different than other people's iPhone settings, so, um, but as far as like early career and, and the tra trajectory into tech, um, it just kind of happened. And, uh, yeah, I've, I've, I've been very fortunate to, to work in a lot of amazing companies, big and small startup to Fortune 500.
And, um, yeah, that's just kind of a quick [00:13:00] run through. Um, as far as the. I launched into tech.
Matthew Reeves: Yeah. And then that ultimately led, it sounds like, to uh, you getting some ideas about something to. On your own, uh, sort of an entrepreneurial, tactic or, or, or, or problem solving approach? What, tell me about that part of the story.
Nick Mendler: Yeah. So I think this is, this is where, um. Kind of the vision in, in life stories collide. Uh, so it kind of goes back to, you know, just wandering through the career. I lived out in Denver for, for 10 years, which I loved, uh, out there. And I got involved as my vision was kind of changing a little bit. I was, uh, getting involved with the Foundation Fighting Blindness, uh, Denver chapter.
And, uh, just was kind of volunteering, you know, setting up tables and things like that. But the, the cool part for me was that that was, that was my resource, the one resource I did find for retinal disease. And they had events obviously [00:14:00] walks and, and golf tournaments and, and things. But I think the one that stood out was the symposium, which is where they would have the doctors and vendors and everybody come out to, to really showcase what you know, uh, was available to the community.
And I mean, that was probably. Um, you know, I don't know, 2015 or 16 that I'm thinking about the, the current, that one event. Um, but to me it kind of opened my eyes, not just from my doctor being up there and sharing all of the amazing things that are happening not just in the US but globally. Um, but also just.
You know, the vendors and, and who came out to the facility, uh, for the event. So you had everything from accessible technology, you know, guide dog schools, mobility training, voc rehab, um, all of the different, um, kind of tools in the toolbox, if you will, um, for the blind and low vision community. And, you know, as I, as he was speaking about.
Optogenetics or gene therapy or [00:15:00] something super smart. Um, I was sitting in the, in the audience and just thinking like, there has to be some kind of website I can go to and, and has everything that I've seen here today. It has his stuff and it has all the vendor stuff and, um, you know, pulled away from that, went home and, you know, looked things up and, and really didn't find a solution.
And I just kind of thought back to my 16-year-old self of like, that would've been. Amazing if I could have left the doctor's office with a solution, um, to really be connected with all the things that I'm seeing here today. So, um, that led me to, you know, i spy.org, which is, um, our flagship, um, website for the I Spy Foundation.
And, um, yeah. And so the iSpy Foundation. Is a 5 0 1 C3 nonprofit. Um, you know, our mission is, is pretty straightforward. It's to create a better digital future for the blind and low [00:16:00] vision community. So in that, you know, there are so many things with, um, vision loss that, you know, I think about in the sense that we're all living life.
Um, we're just living it through a different lens. And you know, that's a statement that, um, that we say quite often here, and it, it's really to speak to, you know, you have your, your life trajectory that everybody's on. And, and life is hard enough. And then if you, you are losing a, a sensory, um, like vision, you have that layer on top of life that makes it that much more challenging.
And again, vision is a spectrum and you know, it's hard for some people to realize that not everybody, you know when they say that they're going through vision loss. Um, they initially think that you're blacked out. You can't see any kind of light perception or anything else. And, and the truth, and the reality is that we're all in a, on a spectrum and, and most of us are in the middle, um, [00:17:00] of, you know, having, having really, you know, whether it's you have 2010 vision or you have, you know, no vision, um, it's a big spectrum.
So, to me, I think it was just, you know, looking at the landscape, working in tech for 20 years, being a technologist. I think what I've also noticed is that our community is often left behind in the di digital space. Um, just because the way that websites move so fast, apps move so fast, um, you know, now we.
Have the two letter words that haunt us every day of ai. Um, everything moves extremely fast and when you don't ha where you're losing a sensory or you don't have a particular sensory, whether it's vision or hearing, or you know, different things, um. The world's different for you. And we live in a digital world and you know, oftentimes, you know, people aren't accounting for that.
Uh, which is, which is sad because we're such an amazing audience and, and [00:18:00] so talented, um, that we're sitting on the sidelines for a lot of the amazing things that are happening in an online world. Um, the good thing is that we have. A ton of amazing resources that are, that are out there fighting for accessibility, a DA law, compliance, um, you know, making sure the web is, is, um, is getting better every day and that websites are being compliant.
But I think for me, that the, the root of what Eye Spy Foundation was started in and, and eyespy.org goes back to that 16-year-old and, and really that, that gap of great. Um, I'm diagnosed or I had a safety accident or, you know, I just, I had vision loss from when I was a child. There's so many different scenarios.
Um, the question is where do you go to start your journey? Um, what's your one stop shop? And that's eyespy.org Um, you know, [00:19:00] that's why I created it. And, you know, we've learned a lot about our community in the past 18 months. Um, 'cause I've, I've, I've built it. We've got, you know, well over 900 plus resources on there.
Matthew Reeves: Wow.
Nick Mendler: when I speak about resources, um, I think our landscape has opened up. Quite a bit as far as digital as well. So we obviously have our nonprofits, we have our government agencies, we have our schools, we have, um, all of the, the traditional things you think about. But I think the other part of this is the, the new media that kind of came in in the, um, you know, 2010s, um, more or less with apps and podcasts and now we have a creator economy that's that, that people are sharing their own stories on different social media networks.
Um, I think there's so much there and it's so rich that everybody can find some kind of resource that makes sense for them. [00:20:00] And you know, I think that there's a lot of different challenges that we're all facing. Um, I think, you know, Mac, you could speak to it more than I could, but, you know, the, just hearing people's stories, it's very easy to go into depression, anxiety, isolation, um, because the world's not built for us and a sense of a visual loss.
Um, so you really have to. Kind of make your own way and figure out your own kind of ways around it and, and life hacks and, um, yeah, just finding the, the, the route that that's working for you in your life with your, you know, particular vision loss. Um,
Matthew Reeves: like the, the, the, the difference is. If you had been, if you had had this resource at 16, what would that have meant for you? How would that have impacted, those first few years of, of, of the journey for you?
Nick Mendler: Yeah, I think, I mean I was [00:21:00] very, you know, computer forward, um, in the nineties, so, you know, I think for me it would've been at least a starting point to research. What this whole thing was about, you know, um, and the way that we're building I spy is the way that I, I wish it was back, back then. So, um, and knowing my mother, how she was, you know, she would've been on top of it as well as far as connecting with whoever was a part of that organization.
And so I think in, in 98, if I had it set up the way that we are setting up I spy now, um, it would've been a game changer for me just because I would've had a go-to person. Um, and what we're doing alongside of, of having the, you know, the website is, is really a huge directory at this point, but as we add features and different things to it, the big thing that we're fundraising for this year is, um, a navigator and. What we've also [00:22:00] established is that every city is super unique in the way that we have different resources and, um, different organizations and different services available to us. So our focus, uh, this year for 2025 is to create a city hub.
Here in Jacksonville that's specific to Jacksonville, Florida, and have a navigator. So to go out and hire somebody from the blind and low vision community to be the person on the backside of that website. So you can certainly go on there and and engage with everything yourself, but I think the human connection of.
If I was 16-year-old Nick, I could go on and I could chat or send an email or a contact form, and then know that somebody else on the other end who's similar or at least understands my situation innately because they're either in the same condition or, or something else, um, can greet me with, [00:23:00] you know, what we say, a hug or a handshake.
Um, and really connect with you right off the bat of, okay, you're 16, so. What happened, what's what's going on? And then I could roll through the story of, well, you know, went to the doctors, all the, all the things I said before.
Matthew Reeves: Right.
Nick Mendler: And then the question is, well, how does it work? Um, is there an organization? And, you know, I didn't really know about FFB in high school, so that would've been.
One of those resources. Um, and again, for me, I think it's also about the person and how they want to attack things. Um, you know, I'm a person that would rather know about something and, and work, you know, work to understand it better. Um, and to me it's an, it's just, it would be an invaluable resource that I would've had to, to guide me.
You know, we all need guides in life in different ways,
Matthew Reeves: Yeah, I'm, I'm really struck by, uh, well, I'm, I'm curious, before I ask that, that question, I'm curious, did, [00:24:00] was the idea of the navigator role of baked in from the very beginning or is that something you came upon after creating the directory?
Nick Mendler: Yeah, it's, it's been a flowing thing. Um, I think I, I created the site, you know, we added all, all of the, the resources across the United States once I got into it, you know, this is really a gut thing of, of just thinking that, hey, this is something we need, you know, and, and if you're in tech, you kind of, um, need to go explore.
Is it actually needed in the marketplace or, um, is it needed in the community in this case? And so really the last kind of 18 months to two years has, has really been going to conferences, being on calls, talking to people, you know, um, personally, and even just being at a conference and having five or six different people come up to you in a 20 minute period, you really understand that.
Um, and we were just asking simple questions [00:25:00] like, how can we help you? You know, nothing really, um, specific, and you would have five or six different conversations. So I think what came to me is that, again, I think we're in a really interesting kind of bridge timeframe, um, with where tech is. But I think the, the, at least in my life, I've always felt that, um, the, we will always need humans.
Humans will always need humans. Um, and I think that that. It's just something that struck me really hard, um, in a good way because it's like, well, this is great. We can give an opportunity to our community who's, you know, very underemployed. Um, and also it would be somebody that can. Right away start a conversation with you in a different, in a different way than somebody that would really doesn't understand vision loss or, um, and, and to be fair, I'm not going to know everything if I was the navigator [00:26:00] of every particular retinal disease or
Matthew Reeves: Right.
Nick Mendler: visual situation.
But I think that just, like I said, just coming with, um. Kind of an open heart in the sense of, of being able to like, you know, shake your hand or give you a hug. I think that that's the way that we wanna position it. And, um, it kind of just came about with all those conversations. Um, it's, it's a, it's a need.
It's not a want. Um, and I think down the line, um, well kind of have three navigators. So we'll have, you know, the website's its own kind of navigation tool in the sense you can go on there yourself anytime of day. The navigator, um, a city navigator, which is, um, what I call like a know-it-all navigator because they're going to be the person in the city that knows all the events, all the news, all the people, all the programs, you know, they're really your your one stop shop person.
Um, and eventually we'll get to, you [00:27:00] know, some kind of AI chat bot or something like that, that really innately understands your city as well, so you can engage that way. Um, I don't just say AI to just say it like, um, for me it's, it's more of a, has to be a thoughtful thing in a feature that we add on later.
Um, but, uh, we're focused on, you know, building out cities and building out, uh, our navigator network.
Matthew Reeves: It, it strikes me that, um, you mentioned it was a gut thing, and that, uh, you know, in, in my job that resonates with me. 'cause that tells me that, that it's something. Very deeply human and very, uh, kind of at the emotional level that you noticed that the, the need, and I agree with you, it's a need, uh, not a want, that it's the most obvious place to start, is the, the list of [00:28:00] resources, the tangible directory to say, here, here's, here's something that's so much more than a pamphlet. Right. And then, and then you got to a place where it was like, but that actually is not scratching the human itch. It's, it's meeting part, part of the need, but it's not connecting uh, that much less tangible sensation of disconnection and isolation and feeling like nobody understands. So you're bringing in the human component to say, Hey, let me. a, as a kind of kinda a roadmap. We'll use the directory as to connect the navigator and the user. Uh, like ostensibly, they're there for the resources, but while they're there, it's an opportunity to make a human connection and let somebody know that they're not alone. That that seems really
Nick Mendler: Yeah. Yeah, I think that the, you just nailed it in the sense of the human [00:29:00] connection and not. Knowing that you're alone. I think, at least with my diagnosis, going back to, to that, you know, that's a, a one in 4,000, you know, people are diagnosed with what I was diagnosed with. Now there's, you know, more rare and there's less rare.
But I think when you get numbers like that, you're like, so you're saying to me. If I met another, you know, 3,909, you know,
Matthew Reeves: Mm-hmm.
Nick Mendler: that many people that then I would finally come across somebody else who has it. Um, it's a really interesting thing and it can kind of throw you back like, well, do I even have a chance of having any kind of.
You know, a medical trial or something, which by the way, now we do, um, there's, there's some amazing things that are happening, um, for my particular gene mutation. We don't have to get into that, all the, the science stuff. But, um, yeah, I think that that, that human connection 'cause, because what I also thought of my gut instinct was also, okay, well think about it, technology [00:30:00] runs in cycles and think about how you can't get a person on the phone anymore.
That was a technology kind of like bridge and change that happened when you started to have phone trees and then you wouldn't have just a, you call the number and you get a person on the other end of the phone like that went away. Then there were, because I worked in a call center coming outta school and selling golf packages, which is very different.
But, um, I understood what it meant to be on the other end of a phone and actually have that human connection of, you know, talking through someone's vacation with them. Um, but then I thought about it this way. I'm like, wow, you get this diagnosis for life and I can't reach out to one particular person. I have to.
Go online, do the research myself, or read a pamphlet, call the number. Maybe I get a person, maybe I don't, maybe I leave a message, maybe they get back to me. So I, I think for us, our, [00:31:00] what we're striving for with the Navi Navigator program is really a person that will meet you where you are. So the other part of this thing is that.
We all have so many different forms of communication that we use, whether it's I'm a texter or I'm a phone person, or I'm a social media person, that I think we're all kind of forced to figure out what the other person's kind of communication style is. And for us it's, it's like we wanna meet 'em there, wherever they are as best that we can, uh, given resources and money and all of that.
Um. But yeah, so I think that that that innate human connection is always going to be there. And so that's why I kind of shifted focus of, okay, everyone said that this is a great idea in the sense that we don't have it. We need a big directory of like all the things that I can, you know, participate in. Um, but still there's a vast amount of information.
So you kind of get this paralysis by analysis. [00:32:00] So you. There's too much information. You're stuck or you have no information and you're stuck. So we're trying to
Matthew Reeves: is, is bad
Nick Mendler: Yeah,
Matthew Reeves: entire encyclopedia is not much more useful. Yeah.
Nick Mendler: that's right. That's right. So we're trying to, to bridge the gap there, make it easier for people, because again, these aren't, these aren't fun conversations. But, you know, one of, um, our other kind of tenants or what we kind of, you know, hang our hat on is being approachable. I think the other, that word for us is really important, approachable and authentic in the sense that, you know, when you're dealing with complex science words, it gets way over people's heads.
And that makes you kind of step back and not wanna engage because you're like, I can't even say my, my family members can't even say retinitis pigmentosa. I'm just like, just say rp. RP is fine. I know what you're talking about. You know what we're talking about. So, um. It, it can be [00:33:00] daunting in the sense of the terms and even some of the things like voc rehab, what does voc rehab mean?
You know, is that work stuff? Is that what, what does that mean in layman's terms? And I think that that, that's the other part of this thing that we're kind of sorting out is, um, talking about it in a lifestyle sense. So, you know, everyone's coming into it as, as far as like their life. Um, and like I said, living life through a different lens.
Start with life, then figure out the lens, and then we can navigate you to your resource. Um, because it's different if you're married or if you don't have anybody in your life. It's very different. Um, if you have kids, it's different. Um, if you're a kid or you're a senior or you're a midwife or you're mid-career, um, it's all, it all changes things.
So. We gotta try to meet people where they are. Um, but that's a whole lot of different scenarios to, to unpack.
Matthew Reeves: Very much so, and you know. [00:34:00] You talked about the encyclopedia of resources. Um, can you give me a sense of the, kind of the categories, what, what types of resources are you trying to collect to make them more accessible to the people who need them?
Nick Mendler: Yeah, I think again, it's, it's understanding the person first and then trying to, um, connect them in with the topics that they really need at that particular time in their life. So. Uh, to high level it, I mean, there's a lot of basic ones that we know are, are issues or opportunities, if you will. Um, you know, transportation is one, you know, I, again, I'm, I have a lot of usable vision.
I'm very fortunate to drive, but when you can't see, you cannot drive. So, you know, that's a big fear for me of losing my car keys, but it is a thing. Um, so we rely on public transportation. You know, when we talk about. You know, the Ubers and Lyfts, they have programs, sometimes good, sometimes not. Um, government, [00:35:00] um, every city usually has some kind of paratransit, um, situation, and that's different in every city.
Not every city has trams or, um, you know, kind of trains or things like that. So, like I said, every city's unique, but transportation is one. Um, obviously career life, if you are still trying to, uh, if you're still in a job, um, or you need a job, um, you're going to need some assistance probably with, you know, especially because we work, like I said, in a computer age, um, with how do you interact with the screen?
It's very different. Uh, you might need a, um, a JAWS or some kind of, you know, text, uh, you know, uh, help or Zoom reader or anything like that. So, um, it just depends where you're at. Um, but, you know, workplace, transportation, um, family, you know, family is a huge one. Uh, I think that, um, and that I think kind of dovetails with, with therapy and, and [00:36:00] just also helping, you know, people understand their life and how that changes things.
And just for, um, the affected person, um, I think it's also with their family members as well. You know, how they interact changes, um, if you have kids, that changes the relationship of, of what a kid's life is like with a, a parent or a sibling, um, with lower vision. Um, you know, I think even a work situation is different, you know, colleagues, friends, um, it all kind of changes.
So that dynamic is, is huge. Um, and like I said, I think, uh, obviously like just having a diagnosis, you're. Mental part, it changes quite a bit as to like, well, where do I go? What do I do? How does this change for me? And you don't have a concrete answer of, I'm not going to see at this, you know, this age, or I'm going to see this much at this age.
Um,
Matthew Reeves: Yeah,
Nick Mendler: that [00:37:00] can, that can take a mental toll. Yeah.
Matthew Reeves: Yeah.
Nick Mendler: mental toll is there too.
Matthew Reeves: Right?
Nick Mendler: So,
Matthew Reeves: are a lot of burden emotionally. Yeah. You
Nick Mendler: yep. So there's, go ahead.
Matthew Reeves: I'm sorry, there's a little bit of lag, so I didn't mean to interrupt
Nick Mendler: No, you're good.
Matthew Reeves: uh, mentioned the, the family and, and the loved ones. Would you say that I spy.org is also a resource, not just for the person with the diagnosis, but for loved ones as well? Can you, can you talk about that? You're nodding your head.
Nick Mendler: Yeah. Yeah. Um, so we, we say it's our three A's. Um, we, we've talked about the affected, you're a person like myself, um, but I think about it as the affected. Um, they're advocates, so that could be mother, brother, sister, friend, colleague, um, really anybody that cares and you can be an advocate for yourself as well.
Um. And then the third one is, uh, academics or what I say are the professional services of the world. Um, you know, you have your doctors obviously, [00:38:00] but you also have gene, you know, gene therapists, and you have, um, or I'm sorry, genetic counselors. Um, you have therapists, mental therapists, um, psychologists.
You have voc rehab people. You have really anybody, adaptive sports people, anybody that's in our realm. That is helping us in, in some kind of fashion. Um, that's a third audience as well. So there's a lot of angles to think about this thing, but I think the good news is over the, yeah, like I said, over the last 18 months or so.
We, we don't lack people with big hearts. You know, I think that that's been really a, a cool discovery in the sense that when you do connect with these organizations or the services that are local to your city, um, you usually find a really compassionate person on the other side. Um, who understands how to serve, you know, a person with low vision lifestyle, you know, what they need, um, you know, really can ask good questions, [00:39:00] um, to make sure that, that you can just come in and enjoy yourself.
You know, I think that he, like here in Jacksonville we have, um, Brooks Rehab that does an amazing adaptive sports program. And it's everything from golf to kayak, to bike to clay shooting. And you know, when people talk about. Blind people with guns. It's very weird to hear, but what my, my kudos is, is to, to brooks in the sense of having those adaptive sports and programs and safety measures in place to make that possible.
Um, and so, you know, there's, there's so many things like that that are across the us. Um, but again, it's, it's so. The, the, the realization through my journey has been, we can't unpack all of that at once. There's just too many, uh, too many amazing resources. Um, so we gotta go city by city because every city has its own flavor, has its own community, um, has its own resources.
And, um, [00:40:00] you know, we need to put a navigator in these major metros to, to also give a, a person a feeling that, hey, this person's not only. Like, understands you on a, on a vision level, but they're in your city. So you can even talk about what, what's your favorite restaurant? You know, did you go to said movie sporting event music, you know, venue this week, or music festival at the beach, or whatever it might be.
So
Matthew Reeves: Or like what's it like to go through the paratransit application process
Nick Mendler: yes.
Matthew Reeves: particular transit agency, which I'm sure is different from city to city. Are you
Nick Mendler: Yep.
Matthew Reeves: where, um. I mean, ob it sounds like Jacksonville is very much a pilot program and you're, and you're kind of building it out from there. Is the infrastructure in place enough that, or how close are you to expanding that to other cities? And if people are interested in, in helping in their city, is that something you're ready for?
Nick Mendler: Yeah, so at, at this [00:41:00] point we have a lot of the tech infrastructure in place. So, you know, going city to city, adding resources and the directory. Um. Isn't, isn't really the challenge. I think, um, at this point we just, you know, I, I think of it as, um, three things that you always need. You always need, uh, time, talent, and money.
So right now I think what we're doing is fundraising for the, the first navigator. Um, having our city hub, which is what we're kind of in. What we call Tech Sprint right now of, of building out that city hub. Um, once we have those two things in place, and we've got some of our major fundraising events coming up in September, um, our goal is to unpack Jax, uh, or Jacksonville this year and then have a blueprint for taking it to other cities, um, in 2026.
And again, I think the expansion plans, you know, can come as. Either we find, you know, sponsors that want to help, [00:42:00] uh, a particular city, or we find a lot of community support that says, Hey, like we need an I SPY here in Atlanta, or whatever city you might be in. Um, and how do we, how do we get this going? And you know, for us it's obviously like we will after Jacksonville have a.
Playbook of this is how we do it. We find all the resources, we put them in the directory. We find an amazing navigator that knows it all, uh, in the community. And then we just warm up the, the community to say, Hey, we're here. Um, you know, we're gonna have this event to get to know everybody. And then, um, yeah, I think we're ready for it for 2026, but we need to have the model done this year, um, in order to do that.
Matthew Reeves: Gotcha. And as far as the directory itself, uh, even. M prior to the, to the, the full on launch of the, the city hubs and the navigators. What's the reception been of i ipy.org, uh, in, in the low vision community. And is it challenging [00:43:00] for you to connect the community that needs the resource with the resource you're building?
I know sometimes it's the hardest part is getting the word out. What, what's that been like and what's been the reception been like?
Nick Mendler: Yeah. Um. I think overwhelmingly the, the, the response has been positive to the idea and to the site. I think the, the challenge for me, and again, we're kind of in this, this spot now of, of working through it, is, um, is making sure that the site is accessible for everybody. Um, you know, I think that that's, we have to build.
Our website differently because we're thinking about the blind and low vision. You know, deaf like that population first. So we're kind of having to redo a lot of the things that I started with. 'cause I was just trying to get an idea out of my head. And now that we know that it's needed. Um, we've gone through a big, um, accessibility audit with the Blind Institute of Technology, and they've been amazing and, and great in helping us, [00:44:00] but we have to adjust the site and, and make some upgrades to that portion so that it is, uh, it can be useful and accessible for everybody.
Um, that's happening. Pretty much right now, the next two months, and then again at the end of September is really when we're going to kick off here in Jacksonville with our first big fundraising event. And also, um, some social events which are kind of support groups that, a program that we set up with a local therapeutic practice here in Jacksonville called Ellie Mental Health. Um, they're a franchise, but they have, um, a program here for low vision. And so we have those things kind of gearing up in September and then that puts us in position to really market and share everything in Blindness Awareness Month, which is October.
Matthew Reeves: That's fantastic. Uh, well, good luck
Nick Mendler: Yeah.
Matthew Reeves: With the events and the fundraising and that, that's usually such a hurdle. Um, but it, there's certainly no shortage of [00:45:00] need and it seems like such a, a resource that, uh, is, is really, it's, it's not hard to communicate to the people who may have the resources that you're looking for. Uh, like why this is valuable. Uh, I think sometimes there's. It's hard to, to help people understand what your, what your vision is, but the vision here feels very accessible and very clear. Um, so, uh, I, I think, I think I'm, if I hope I'm right in predicting that you won't have any trouble with that, so,
Nick Mendler: Yeah. No,
Matthew Reeves: yeah.
Nick Mendler: I appreciate you saying that, Matt. And, um, if anybody wants to, you know, engage with us or engage with me as we're building out the project, um. spy.org. So it's EYE, um, instead of the letter I, some people think it's letter I. Um, so E-Y-E-S-P-Y. Org, uh, slash talks. So T-A-L-K-S, um, that's the URL that I keep for, [00:46:00] for all of these amazing, um, you know, appearances that you've given me the time here today.
Um, but it, but it'll give you like other talks that I've been on or a contact form or newsletter sign up. Um, and that's where you can really start your journey. Um, or you can visit ispy.org and, and cruise around and see what's local in your area. But, um, for me, I still love to connect with people one-on-one and, you know, hear about what's your pain point, where are you located at?
What's your city like? Um, there's so many things that, for me, this is a legacy project and, um, it's never going to be not, uh, I'm always gonna be curious about a lot of different things. Um, and there's always going to be new things that I didn't think of, um, to, to help with. So, um, yeah, so anyways, that's, that's kind of the, the call to action there.
Matthew Reeves: Yeah. Thank you. Uh, what, and I'll put some of that information in the show notes as well for people to access. Um, I'm. I always like [00:47:00] to hear about not your, not physical vision, but you know, uh, mental vision. What, where, where do you see this headed in the long run? What, what would make, what would put a real big smile on your face if you, if you looked@ispy.org or the I Spy Foundation in or 15 years, what do you wanna see?
Nick Mendler: Yeah, I think, um. I don't, I don't lack, uh, big vision or as far as, uh, big dreams, I guess you'd say.
Matthew Reeves: Yeah.
Nick Mendler: but I have, I have different, you know, five tier, 10, 20 year plans. Um, but to me it's, it's pretty simple. I mean, blindness doesn't have borders, right? So there, there's, it's not like, uh, retinitis pigmentosa is specific to Jacksonville, Florida.
It is a, you know, just one disease and multiple retinal diseases. But what I'm getting at is. Um, however you come into the low vision lifestyle, um, it's happening across the globe. [00:48:00] So like a big vision for me would be essentially this, this platform would be become the place that you start your journey and you can go on there and not only find resources, but you can also connect with people, connect with navigators.
It becomes our one-stop shop of, um, this is where I start, you know, and then I go off and find my local resources, or I start to engage with. Podcasts I didn't even know about, or a creator or influencer, or whatever you wanna call them nowadays that you didn't know was on social media or, Hey, this app that I found on I spy really helped me because it was like this magnification tool that I really needed.
Um. Or you know, hey, there's a new story about this new gene therapy that could be for my mutation that I didn't know about, or a clinical trial just came up outta nowhere. That is, you know, specific to me as well. So I think the opportunity is huge. Um, and again, I [00:49:00] have that, that vision for, for the kind of the, the big global community, if you will.
Matthew Reeves: Right.
Nick Mendler: But we have to start in a really natural, like. City level, um, to really understand how that works for every said community, because we're all different culturally, um, different languages. You know, we've got bilingual language, you know, cities. We have all sorts of things that are gonna be super unique. To work through.
But, um, I'm ready for the challenge. And I think that, um, you know, it's something that, you know, for, to serve people is something that I've really found to be, you know, my calling and, um, this is the best way I can do that as a tech person. And, uh, yeah. So that's the, that's the long term vision of it.
Matthew Reeves: Well, that's a, a long way from a pamphlet, so, uh,
Nick Mendler: Yeah.
Matthew Reeves: I'm, uh, I'm grateful that you know that difficult experience that you had when you were [00:50:00] 16. Became the seed for solving a problem, uh, and, and turning it into to something so other people don't have to face the same thing. one of the things I, I look forward to is the day when the, the people that are handing out those diagnoses, the, the, uh, optometrist and the ophthalmologists, they have a better, a better access to these resources so that the first thing that they hand somebody who's getting a life changing diagnosis is. A bundle of hope. You know, that's, uh, and that's what you're building out is, is the opportunity for hope. So, uh, thank you for building that for the rest of the community. That's really powerful.
Nick Mendler: Yeah, of course. Yeah. All they need to remember is our two words is I spy and then, you know, that would be a, um. A nice day, uh, to know that that was happening in the community. And again, you know, we're, we're just here to be the helpful source on the other side and, and make life a little bit easier.
Um, you know, that's the goal. And [00:51:00] yeah, I appreciate you letting me share the story, you know, from the beginning all the way to where we are right now. And there's a lot of big things coming this year. So, um, I do encourage everyone to go to ICE by.org/talks and connect with me and send me an email and, um, yeah.
And then we can connect there.
Matthew Reeves: Absolutely. Well, thanks for being here, Nick. It was great to hear about it. Uh, and thanks for all the work you're doing.
Nick Mendler: Thanks so much, Matt.
Matthew Reeves: All right. Bye-bye.
Nick Mendler: Bye.
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OUTRO
Matthew Reeves: Thanks for joining us for this episode of Insight Out. You are the reason this podcast exists and we'd love to hear from you. You can leave us a voice message at speakpipe.com/insightoutpod. That's speakpipe.com/insightoutpod. There, you can share your thoughts about today's conversation, suggest a [00:52:00] topic for a future episode, or tell us about your experience living with vision loss. Again, that's speakpipe.com/insightoutpod.
Insight Out is produced by Integral Mental Health Services, my private practice in Atlanta, Georgia that offers psychotherapy for adults in Georgia and chronic illness and disability counseling nationwide. Visit us at integralmhs.com and you can visit insightoutpod.com to catch up on all the episodes. You can also find us on social media using the handle @insightoutpod. I hope you'll join me for the next episode of Insight Out. Subscribe now in your favorite podcast app to stay connected. Thanks again for listening.
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