Real Hope, Real Progress

Lindsey Rambo has always kept her focus forward, whether she’s logging miles as a long-distance runner, raising her two energetic sons in Winchester, Virginia, or teaching special education in Loudoun County Public Schools. But perhaps her greatest act of endurance has been her decades-long journey with vision loss, and the moment when years of uncertainty gave way to something powerful: the promise of progress.

Diagnosed with an unspecified “disease of the retina” as an infant, Lindsey’s early life was filled with uncertainty.

“I wore glasses starting at ten weeks old,” recalls Lindsey. “But no one really had answers.”

Determined not to let her vision define her, Lindsey threw herself into sports like soccer, basketball, and running. In school, she used magnifiers and enlarged print to keep pace, all while doing her best to hide her vision loss from her peers.

“I avoided anything that would draw extra attention to myself,” says Lindsey. “It took me a long time to come to terms and stop trying to be like everyone else.”

At 16, Lindsey received a diagnosis of cone-rod dystrophy, along with a prognosis that she could experience complete blindness by her early 20s. It was overwhelming and discouraging enough that she stepped away from eye specialists for several years.

It wasn’t until her late 20s that she reengaged with the medical community, eventually receiving a new diagnosis in 2013 of retinitis pigmentosa. That visit, in Philadelphia, was the first time she left an eye appointment with something she hadn’t felt before—hope.

“The retina specialist told me, ‘Within the next 5 to 10 years, you’ll be a prime candidate for a treatment.’ I had never heard anything hopeful like that before,” Lindsey recalls. “And then, at 28 years old, I finally received a correct diagnosis after genetic testing at the National Eye Institute of LCA5.”

That spark of hope became a turning point. In 2022, Lindsey’s husband, Zach, searched ClinicalTrials.gov and discovered the Opus Genetics gene therapy trial for LCA5—Leber congenital amaurosis caused by mutations in the LCA5 gene. The listing felt like fate, almost ten years after her last visit to that same retina specialist in Philadelphia. Lindsey reached out right away. And in September 2023, Lindsey became the first participant to sign consent for the trial. She received gene therapy in her left eye—the eye that had always been weaker.

The process is demanding. “It’s mentally and physically exhausting,” says Lindsey. “The travel, the long days of testing, the follow-ups—but I don’t take it for granted for a second. I feel very fortunate to have been selected.”

Lindsey and her family live over three hours from Philadelphia, and she’ll remain part of the study for five years. But just weeks after surgery, she started noticing a difference.

“About a month after surgery, I looked out the window and saw my kids playing in the yard,” recalls Lindsey. “I’d never been able to do that before. It was just a little moment, but for me, it was everything.”

Those early observations were confirmed through testing. Lindsey’s left eye, once her weakest, has now become her strongest. Her central vision has improved, and she’s been able to reduce the text size on her iPhone and iPad for the first time. And her performance on the virtual reality orientation and mobility obstacle course has improved with each visit.

“It’s so surreal,” says Lindsey. “I still haven’t fully processed the fact that this is happening to me.”

That moment was seeded years earlier, when Lindsey attended her first Baltimore VisionWalk in 2014.

“It was the first time I felt hopeful—not just for myself, but for everyone living with vision loss,” says Lindsey. “I didn’t know if I’d ever benefit from a treatment, but I wanted to be part of the community working toward it.”

Today, Lindsey continues to give back—through her podcast, “Chasing the Light,” where she documents her clinical trial journey and everyday life with blindness, and through advocacy work with the Foundation Fighting Blindness. In 2024, she shared her story on a national Foundation webinar about clinical trials, which led to a powerful connection with another woman diagnosed with LCA5. The two now speak regularly and consider each other “soul sisters.”

Lindsey has also written two books, “Joyfully and Faithfully” and “Joyfully and Faithfully Fit: The Extra Mile,” and uses fitness as a tool to care for both her body and spirit.

“I can’t hop in a car and drive, but I can put on headphones and go for a run,” says Lindsey. “That gives me a sense of freedom.”

Each chapter of Lindsey’s journey has added strength, clarity, and purpose to her path. Not being able to drive, especially as a teen, was a deep source of frustration.

“It was the first time my motivation couldn’t overcome something,” says Lindsey. But with Zach’s unwavering support—he even loves to drive—she’s learned to embrace interdependence and focus on what she can do.

Embracing support and focusing on what’s within her control has shaped Lindsey’s perspective, and it’s something she hopes others with vision loss can hold onto, too.

“Find what fuels you and pour your energy into it,” says Lindsey. “There are so many resources and communities out there. No one should have to navigate any type of vision loss alone.”

Lindsey hopes to receive treatment in her right eye within the next year and a half. As clinical trials like this continue to advance, Lindsey envisions a future where generations to come won’t have to face the same uncertainties she once did.

“I just want it to be easier for the next generation,” says Lindsey. “I want them to grow up with treatments and cures. That’s what drives me. For so long, I believed research would help someone else, but not me. Now I’m living it.”