In this episode of My Hero 360, Kerri Fitzgerald speaks with Scott, founder of 4Summers, who struggled to find a diagnosis for years for his newly developed visual disturbances. After seeing multiple doctors and receiving no answers, Scott took to YouTube and other online platforms to find an answer. Soon, he found out he had Visual Snow Syndrome, a rare, little-known neurological condition that impacts vision. Determined not to let his new reality keep him down, Scott decided to launch a platform to advance the awareness of and research for this condition.
Key Highlights:
- Hear how Scott finally received a Visual Snow Syndrome diagnosis.
- Learn about his newly launched 4Summers initiative, including the upcoming Summer Solstice event taking place June 20, 2025.
- Learn more about how you can help support the goals of 4Summers through an upcoming auction.
- Be inspired by Scott’s use of music and art to drive the mission and purpose of 4Summers.
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Transcript:
Kerri Fitzgerald:
Hello, and welcome to another episode of My Hero 360, the storytelling platform that brings you inspiring voices from individuals who are making an impact by advancing the awareness and research for different medical conditions. My name is Kerri Fitzgerald, and today we are highlighting the hero story of Scott, founder of 4Summers. Scott, thank you so much for speaking with My Hero today.
Scott:
Sure, Kerri, thank you for having me. I’m super excited to talk to you.
Kerri Fitzgerald:
Awesome. Well, let’s get into your story. You were experiencing some visual field symptoms that seemingly couldn’t be explained by doctors. You mentioned you went to several doctors; they couldn’t figure out what was causing the impacts to your vision. After doing your own online research, as we all do with Dr. Google, you came across a diagnosis. Can you tell us about the visual changes you were experiencing and also your journey to finally understanding what was going on?
Scott:
Yeah, for sure. The visual disturbances that I experience are what I would describe as an old television static. It just looks like a fuzzy overlay over my vision. I also see excessive floaters. If you’ve ever had on your vision it looks like a hair that when you look around it kind of follows you, I have those but in excess. Then I have what’s called the blue field entoptic phenomenon. The best way I can describe that is it looks like there’s tadpoles just swimming in my vision everywhere, and I primarily see those when I’m outside. As well as palinopsia, which is where when I move my hands in front of my field of vision, my hand almost blurs as I move it. Those are the majority of my visual disturbances. Sometimes I get visual migraines as well as spark flashes and starbursts in my vision that can be distracting.
Kerri Fitzgerald:
You found out it’s actually a neurologic condition, correct?
Scott:
Correct, yeah. It’s called visual snow syndrome, and it’s a neurological condition. The best way I describe it, which I’m not a doctor so I may get it wrong, is it’s just basically a misconnection between your brain and your eyes, which causes disturbances with the static and stuff. But some of the other stuff is actually happening inside your eyes. Honestly, the reason why it was so hard for me to get diagnosed is because it’s hard to pin down exactly what’s happening. I think that, honestly, has contributed to the struggle of actually getting the diagnosis for other people as well, not just myself.
Kerri Fitzgerald:
It’s a very rare condition, little known. How did you finally come to find out that this is what you had?
Scott:
Yeah, so without giving you a 20-minute story, basically I had developed these symptoms. I was reluctant to go to the doctor because, to be honest, I have pretty bad health anxiety, and I was like, “This will go away. This will go away.” It didn’t go away. Went to 3 different eye doctors and they would dilate my eyes and tell me I was fine, which would basically send me home with more questions and more anxiety because I’m like, “Oh my goodness, I’m going blind and they don’t know what’s wrong. Or maybe I have a brain tumor.” All those thoughts going through my head, just making a two-and-a-half, 3-year period really hard for me. But how I got my diagnosis was is I went to YouTube, started searching stuff, found a video that led me to the Visual Snow Initiative’s website.
On there it was just like check, check, and check, everything that I was experiencing, which it almost brought me to tears, just tears of joy to see that, “Oh my gosh, I’m not crazy.” I literally took that criteria into my next eye doctor appointment, a new doctor, so this is the fourth doctor, I said, “Dude, I’m going to show you something. This is everything I’m experiencing.” I was scrolling through it with him and we had a good conversation, he was a really good doctor. He’s like, “Dude, don’t tell people this, but you just diagnosed yourself.” He’s like, “This is really rare. Not a lot of people know about this stuff.” It was one of those things where it was a sense of relief to get validated from a doctor to realize I’m not going blind. That felt good, but the catch was is there’s no cure. It was like that was hard. But yeah, that’s how I found out about my diagnosis or what I have basically.
Kerri Fitzgerald:
Like you said, there’s no cure, but you’ve taken this experience to launch 4Summers, an initiative that seeks to increase awareness of and raise money for research for visual snow syndrome. What motivated you to undertake this endeavor?
Scott:
Yeah, that’s a great question. On social media I’ve done posts about visual snow, and I’ve had a lot of conversations with people who have struggled really hard, just like myself, and honestly, in some cases even worse than me. That weighs on your heart, in DMs and talking to people. You can only help so many people, and so I started to sit down and think about what do I want to do with this. One of my favorite quotes I was told to by somebody I really respect. They said that, “Great societies function when men and women plant seeds of trees that they’ll never sit in.” What that means to me is, what can I do with my life to be a positive impact, plant trees, and then hopefully have shade for people down the line?
In my mind, I started thinking about that, I’m like, “Well, the biggest thing that solves diseases or helps get cures is obviously shining the spotlight on it, but also money.” You need money. I was thinking about it, I’m like, “Well, how could I raise money and make this something I could do and justify doing for 20 years? If I could put 20 years of my time into something, how can I raise money?” I was like, “Well, visual snow is a neurological condition that affects the eyes. What if I launched a sunglasses brand and every time I sold a pair of sunglasses, if I donated to charity or to research centers, I think I could have a pretty big impact.” I’m just a creative person and I love that process of developing things, so it fired me up. I’m like, “Dude, this is what I’m doing. I’m going to start this brand.” That’s the inception idea.
Kerri Fitzgerald:
That’s awesome. On June 20, very shortly after this interview will be published, you’re hosting a Summer Solstice event. Can you tell us more about the details and mission behind that event?
Scott:
Absolutely. I’m the kind of person that’s like I have a tendency to go, “Yes and, yes and, yes and.” Initially I was like, “Okay, I’ll design some sunglasses, start selling them online.” But I was like, “No, I want to take it to… ” I like the idea of having a launch where it’s like, “This is where I’m starting. This is the inception of the event.” What I started to develop was like, “Okay, I make music, I like making art. How can I make this an art launch?” What I did was is I wrote an EP with, I think it’s 5 songs of my experience with visual snow syndrome, also including an acoustic release of a visual snow song I did a year ago. Taking that, making that the background music of what’s going to be the launch party, where I commissioned 14 artists to take these sunglasses, just a blank pair of sunglasses, and turn them into works of fine art. Then I’m going to auction those off and donate the proceeds to visual snow research.
They’ll eventually go on something nice like this. I don’t know if you can see it, it’s blurring, but it’s a nice display box. It’ll have a plaque here and everything. But the idea is I feel like when you can bring people together and have art and create a conversation, I think it’s really cool. That’s like the backdrop of the event. It’s like the official launch of 4Summers. We’re developing actual product people will be able to buy online, and it’ll be an opportunity if they’re in person to pre-order stuff. Then also this option will be online, so people can get these glasses and have them shipped to their house if they want to be a part of it. I will say this too, I haven’t figured out what I’m doing yet, but whoever does end up getting these glasses in the option, they’re going to have some special access to future things we do like permanent discounts, like VIP listings and stuff like that.
Kerri Fitzgerald:
These are unique, these are one-of-a-kind…
Scott:
One of a kind.
Kerri Fitzgerald:
…sunglasses that each artist individually made, right?
Scott:
Exactly. Can I show you some?
Kerri Fitzgerald:
Yeah.
Scott:
This is a pair designed by Skye Walker, a very talented artist.
Kerri Fitzgerald:
Very nice.
Scott:
Super cool.
Kerri Fitzgerald:
Yeah.
Scott:
This is by Taia. I feel like I shouldn’t even be touching these ones because they’re online, put them on screen. But it’s got, I don’t know how you describe it, not watercolors, it’s the paint where it’s got raised. I’m so bad with paint styles, but they’re really cool. She signed them right there.
Kerri Fitzgerald:
Wow, that’s nice.
Scott:
These are by Jared Konopitski. These ones are really cool. Inspired by his fishing trips with his father as a kid, which is really cool.
Kerri Fitzgerald:
Oh, wow.
Scott:
There’s 14 of these. My direction to them was, “4Summers stands for seeing the goodness in the struggles. It’s happiness, it’s choosing to be positive through everything.” I said, “Use that as inspiration, but the caveat is I hate telling the artist how to be artistic, so do whatever you want.” This is what they came up with. I mean, all these glasses are so cool. Everyone did such a good job. I mean shout to them for taking time to do this. They didn’t have to work on them for me.
Kerri Fitzgerald:
Absolutely, yeah. The event is taking place in Los Angeles or in the Los Angeles area?
Scott:
Yes, in West Hollywood on the rooftop of the Avalon on June 20. Starts at 6:30 PM. It’s the summer solstice. 4Summers Summer Solstice, just fitting. It’s going to be really cool. It’s just like a place for people to come, hang out, see the art in person, listen to music, have food, drinks, and just chill, hang out with me and people who are going to be there. It’s going to be a good time. This is just the first of many, Kerri. I’m definitely doing this every year. I may do it more than once a year. We’ll see.
Kerri Fitzgerald:
That’s awesome. You said there is an online component. Where can people go who are not in the area?
Scott:
Oh yeah, on my website, there’s a link there. You can go check out the auction bid. I really hope that people see this and they go bid on glasses and just be a part of this because it’s for a good cause, and I really want to raise a lot of money for this cause.
Kerri Fitzgerald:
Yeah, absolutely. Can you share your URL?
Scott:
If you just go to the number 4smrs.com, you’ll go to our blog section and the link will be there for the auction.
Kerri Fitzgerald:
Awesome.
Scott:
I’ll put that on the homepage too so people can see that as well.
Kerri Fitzgerald:
Awesome. It sounds like an awesome event. Everyone should check it out, June 20. What advice would you offer to someone who is struggling through a medical journey or a tough diagnosis? You mentioned earlier in the conversation that this went on for years, that you were trying to figure out what was going on and there’s, I’m sure, a mental toll, not just a physical one. What kind of has helped you get through challenging times?
Scott:
That’s a great question. I would say, first and foremost, is finding people who get it, I think, like being able to connect with other people who have visual snow. I didn’t start connecting with people that had visual snow until about probably 2 years ago. But even that was such a relief and a reminder of like, “Oh my gosh, I’m not some freak of nature. I’m not the only person.” I would say finding people who get it. There’s communities for everything. You just go on online and type in your condition support group and you will find a group that can help you. If there’s not, start one. Go on Reddit; there’s Reddit threads on everything.
Nobody wants to be alone, and I think that’s the biggest thing. Find other people and just recognize that there is a light at the end of the tunnel. For me, during my darkest times, I’d be like, “There’s no way I can live the rest of my life like this.” It took me to some dark places, but I think just persevering, you end up growing so much in the process. It is an opportunity. Some of that, if you’re in the thick of it, that kind of sounds like, “Oh my gosh, that’s so easy for you to say” or “That doesn’t help me right now,” but it’s the truth, is you have to just stick it out and stay strong.
Kerri Fitzgerald:
The community, like you said, is so important. If you can’t find one, create it. I love that. That’s awesome. You talked about being very creative. You’re a musician. I listened to some of the lyrics you wrote about your condition and your journey, it’s really super interesting. How would you say art and music have helped you deal with this journey that you’ve been on?
Scott:
I would say that for me one of the hardest parts about visual snow is it’s 24/7, it never lets up. Even when I close my eyes, I still see static. That has felt like claustrophobic, it’s felt like overwhelming at times. For me, being able to focus on writing a song, thinking of lyrics for a song, whatever, that is meditative for me. It is in those moments where I would find myself being like, “Oh my gosh, I wasn’t thinking about my visual snow for 20 minutes.” That to me was such a huge part of it. Because of that, writing music is something that’s become really near and dear to me and something that I love and it’s just a huge part of my life now.
Kerri Fitzgerald:
Yeah. Awesome. Could you share where people can find you online? I know you shared your URL, but maybe your Instagram handle where people can kind of hear some of that music?
Scott:
Yeah, so it’s Scott4Summers on Spotify. On Instagram, @Scott4Summers as well, TikTok, everywhere, so go check it out, let me know what you think.
Kerri Fitzgerald:
Absolutely. We like to end our My Hero interviews by asking the same question of all of our heroes. What would you tell your younger self or yourself before this all happened knowing what you know now?
Scott:
Oh, this is going to help you find your path, not destroy your path.
Kerri Fitzgerald:
That’s awesome. Well, thank you so much, Scott, for sharing with us today on My Hero 360. You’re making a huge difference and impact by using your voice to advocate for and raise money for this under-researched condition. Love what you’re doing. Good luck with your event. Everyone should check it out. Thank you again for partnering with us on this. We appreciate it.
Scott:
Sure. Yeah. You guys are awesome. I mean, kudos to you guys for what you’re doing and amplifying voices and helping get stuff out there. Thank you, Kerri. Appreciate your time as well.
Kerri Fitzgerald:
Thank you.
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