Story Update: Seeing Through Your Disability

Published July 26, 2021

30-year-old Lance Johnson is a video editor and podcaster living in Brooklyn, New York. Despite being diagnosed with retinitis pigmentosa (RP) at a young age, Lance has never let his RP change his drive and passion for creating.

At the age of 12, Lance was diagnosed with RP. Although Lance wasn’t showing any vision loss symptoms at the time of his diagnosis, it wasn’t a surprise to him, as his mom has RP as well.

“Since I was diagnosed at such a young age, I wasn’t aware of how much it was going to alter my lifestyle in the future,” says Lance. “Growing up with my mom legally blind, I experienced firsthand what she could and couldn’t do, so that helped me know what to expect and wrap my mind around it.”

Lance grew up in the small town of Hope Mills, North Carolina, where he began telling and writing his own stories, even producing independent films on his own. After graduating high school, Lance attended film school. But while in film school and shortly after graduating and entering the workforce, Lance kept his RP from his peers or advisors, which made him anxious working on shoots.

“Growing up, I hid the fact that I had RP and never really talked about it,” says Lance. “I didn’t want anyone to treat me differently, especially working in such a visual-based career. But when I finally told my employer for the first time, it felt like a huge weight off my back.”

After opening up at work, Lance decided to post a video on social media sharing his RP with all his friends and family and was shocked at all the positive feedback. This was when Lance realized being open about his diagnosis was actually an advantage, not a disadvantage like he initially thought.

To continue moving toward a fully transparent life, at 27 years old, Lance decided to move to New York City, not only for his career but also for the accessible lifestyle that the city has to offer.

“New York City checked both of those boxes; it allows me to feel more independent and less limited,” says Lance. “There are not many places in the U.S. that are accessible like that, where you can rely on public transit to get around easily.”

Moving to New York City not only improved Lance’s mobility, but it helped to jumpstart his career as well. Lance currently edits social media video content for various brands, which he prefers over videography now, since he can stay home and use his own equipment, which is more comfortable and familiar. Lance describes having quite a bit of his central vision remaining, which he explains helps with editing.

Lance also created and produces his own podcast, The See-Through Podcast, which generates transparency for disabilities through raw conversations with those in the community. His podcast guests include various artists, athletes, influencers, motivational speakers, comedians, scientists, researchers, technologists, and human rights activists.

“I wanted to create this outlet to express the emotions that come along with being visually impaired and having a disability,” Lance recalls. “I’ve learned so much about myself and the disabilities community as a whole from doing my podcast. I’m all about being transparent, and I definitely want to be an advocate for acceptance of disabilities.”

Lance thinks of each podcast as a mini-documentary and wants to tell other’s stories in a fascinating and entertaining way.

“I talk to a lot of visually impaired people on my podcast, but I interview anyone in the disability community because I think there's a lot of overlap when it comes to accessibility issues,” says Lance. “Plus, I'm looking for interesting stories and how people adapt to their disability.”

To get involved with the visually impaired community further, Lance has become a member of the Foundation Fighting Blindness’ young professionals’ group in New York.

“Hearing other perspectives from people who have more vision loss than me and learning how they’re not letting it slow them down is so inspiring for me,” says Lance. “It just keeps me going, and I want that to empower my listeners too.”

In addition to being a huge proponent of vision research, Lance wants to help raise awareness for RP and other blinding diseases.

“A lot of my friends and family don’t understand what my field of vision truly is and that RP affects everyone so differently,” says Lance. “But I want to continue being open about my invisible disability. There's something very beautiful in accepting your disability and learning to live with it.”

This Beacon Story is brought to you in partnership with Genentech, a member of the Roche Group.

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A New Chapter: Growth, Fatherhood, and Advocacy

Published January 26, 2026

Some seasons of life arrive quietly, shaped not by sudden change but by steady resolve. For Lance, the past few years have been defined by growth — as a creator, a father, an advocate — and by a deepening understanding of what it means to live fully while navigating retinitis pigmentosa (RP).

“My family has literally grown,” says Lance. “My wife gave birth to our son, Elias, in July of 2025.”

Becoming a father has brought joy, perspective, and a renewed sense of purpose. Alongside Elias, his world still includes familiar constants, including Ruby, his beloved dog, who “has grown older but is still alive, well, and cute as ever.”

Professionally, Lance continues to work as a freelance video editor in New York City, primarily contracting with Paramount+. His work has included editing digital content for major series such as “The Challenge,” “Jersey Shore Family Vacation,” “The Agency,” “Lioness,” and “Ex on the Beach.” He also lent his talents to the Foundation Fighting Blindness, helping edit the Share Your Vision campaign, a full-circle moment that aligned his professional work with his personal mission.

One of his proudest accomplishments has been the completion of the SEE-THROUGH podcast. Over five years, he independently produced, hosted, and edited 126 episodes, creating a space for honest, sometimes uncomfortable conversations about vision loss, identity, and adaptation.

“Running the podcast gave me a ton of wisdom,” says Lance. “It shaped how I intend to adapt both mentally and physically to my diminishing field of vision.”

Although the podcast has wrapped, Lance remains committed to sharing personal reflections and insights on YouTube, using storytelling as both an outlet and a tool for connection.

When it comes to his vision loss, change has been gradual. Although he hasn’t had a recent visual field test, Lance describes the progression as slow and difficult to quantify. He is not yet considered legally blind, and while the uncertainty of slow progression can be mentally taxing, he remains deeply grateful for the vision he still has.

“The biggest challenge is not letting my brain defeat me,” he says. “With or without RP, I still have to show up for my family. That takes positivity and hard work on a daily basis.”

Community has been one of his greatest sources of strength. The relationships he’s built through SEE-THROUGH, with guests and listeners alike, have shaped his confidence in how he’ll continue adapting to life with RP. He credits open communication as one of the most powerful tools he’s developed. By vocalizing both practical needs and emotional weight, he has learned that acceptance doesn’t mean giving up — it means making room for resilience.

Today, as a Foundation Fighting Blindness Brand Ambassador, advocacy carries new weight and deeper urgency. With his son having a 50/50 chance of inheriting RP, Lance finds comfort and hope in knowing the Foundation Fighting Blindness is driving research forward — accelerating treatments and advancing cures for blinding diseases. That progress matters not just in theory, but in real outcomes, including breakthroughs in gene and stem cell therapies that are already changing lives.

Beyond research, advocacy is also about example.

“I want my son to see that I didn’t let my eye condition defeat me or define me,” shares Lance. “Standing tall and resilient despite the uphill battle I’m facing as my vision declines over the years really matters. So if he ends up inheriting RP, I want to be a beacon of how to compose and handle the adversity that comes with vision loss versus existing completely with a mindset of a victim.”

Ultimately, Lance hopes that by sharing his voice, others feel less alone, without feeling pressured to fit a single narrative. By offering perspectives that live outside the mainstream conversation around low vision, Lance aims to create space for honesty, complexity, and self-defined paths forward.

When he looks toward the future, hope comes from momentum — from the measurable progress being made by the Foundation and the growing pipeline of treatments moving closer to patients. Knowing that researchers are working every day to translate discovery into real-world solutions gives him confidence that what lies ahead holds possibilities for himself, for his son, and for families everywhere affected by blinding diseases.

“Knowing the Foundation is working around the clock for my eye condition leaves me feeling hopeful,” says Lance. “Incredible progress is happening — and that matters.”