A Vision for the Future

Steve and Kristina Johnston, co-founders of A Race Against Blindness, are fighting rare diseases

By Kaylor Jones / Photos by Claudia Johnstone

In 2021, Steve and Kristina Johnston received a piece of news that no parent ever wants to hear – their 7-year-old son Luke was diagnosed with retinitis pigmentosa caused by Bardet-Biedl Syndrome (RP/BBS1), and would progressively lose his vision, becoming legally blind by as early as his teenage years.

“When we received his diagnosis, it was overwhelming to realize that his vision loss was inevitable unless research could intervene,” Kristina says. “I couldn’t just sit back and hope for a cure – I had to help make it happen. A Race Against Blindness was born from that urgency.”

The Johnstons’ nonprofit, A Race Against Blindness (www.araceagainstblindness.org), raises awareness for communities affected by BBS and other rare blinding diseases, using giveaway fundraisers to raise money in support of vision-saving treatments and restorative therapies.

“We had to quite literally walk away from our old identities – abandoning who we once were and the goals we once had – to take on this unexpected and, at first, unwanted responsibility,” Kristina says. “Neither of us had experience in nonprofit work or rare disease advocacy, but we learned.”

While Kristina’s background as a registered nurse and legal nurse consultant meant she was well-versed in many aspects of the medical world, the diagnosis prompted her to dive into rare disease research, clinical trials and high-level fundraising. Steve, a practicing radiologist with an MBA and the online face of the organization, has set his attention on a promising new gene therapy treatment.

“My primary mission is using my collective medical knowledge and business experience to fundraise for a clinical trial for a groundbreaking therapy that could save the eyesight of thousands of children,” he says.

And they’re well on their way to making a huge impact in current research. Among the most rewarding milestones for Steve was receiving their very first $1 million grant, which helped counteract all the doubt they’d felt since day one.

Kristina adds, “Another of the biggest moments was when we hit $3 million in research grants in 2024. Knowing that we were making a tangible impact on the future of vision-saving treatments was surreal.”

Adventure With a Purpose

One common misconception they encounter, Kristina says, is the belief that blindness is an adjustment rather than a loss.

“For children like Luke, progressive vision loss means grieving something that was once there – it’s not just about learning Braille or using a cane, it’s about losing the ability to see a sunset, a loved one’s face, or a favorite place.”

This was the motivating factor behind the Johnstons’ Summer of Sights Tour, a family trip with Luke, now 11 years old, and their 9-year-old daughter Tyler, with memories shared with their nearly 150,000 followers on Instagram (@a.race.against.blindness) and even in a feature on Good Morning America.

“It’s a road trip designed to fill Luke’s mind with unforgettable visuals before his eyesight deteriorates further,” Kristina says. “Traveling as a family, from panning for gold to seeing breathtaking landscapes, has been both heartbreaking and beautiful. These are memories we will cherish forever.”

In the same spirit of adventure, A Race Against Blindness gives away prizes like campers, concert tickets and vacations, randomly selecting winners from those who have donated to childhood blindness nonprofits. Current giveaways include a 2024 Rossmonster Baja LX Adventure Truck, a seven-day trip to Maui full of unforgettable experiences, and a 2024 Toyota Tacoma with a Voyager Xpedition Trailer and $35,000 cash.

The Times are Changing

Through it all, Steve and Kristina, though divorced, have seen this journey as a chance to unite for a purpose much bigger than them.

“This diagnosis didn’t just impact Luke, it changed our entire family,” Kristina says. “The fact that Steve and I can put aside any personal differences and work together speaks volumes about the depth of our commitment. We’re showing Luke and Tyler that even in the face of adversity, we can turn challenges into something powerful.”

Steve agrees, citing this experience as a hard reality to accept, but also his greatest honor. “Nobody envisions this as their future life, but I’m very grateful to be able to respond to this situation as we have and make a positive of it. My professional life has been become my entire life. Ensuring the success of this therapy we’re fighting for is my entire purpose.”

And they know they’re not in it alone – they’re part of a community of people and families dealing with rare diseases, a community that’s often misunderstood, Steve says.

“Many people feel rare diseases are too hard to treat, there are too few people to impact, and it’s somewhat of a lost cause. This could not be further from the truth.”

Kristina adds, “In reality, rare diseases collectively impact millions, and research into one condition often leads to breakthroughs for others.”

At the end of the day, the Johnstons work to ensure no one has to experience the same thing they did, that when a child is diagnosed with a blinding disease, no parent has to hear the phrase “there is no cure.”

“We want A Race Against Blindness to be part of the solution, changing the way rare diseases are prioritized in medical research,” Kristina says. “Our legacy will be one of action and hope, proving that even when the odds feel impossible, we can still fight for a brighter future.”