A Race Against Blindness wants kids to see a bright future, joining in Tour de Scottsdale to make it happen
What lengths would a parent go for their child to make sure they are happy and healthy?
Well, Kristina and Stephen Johnston have done everything they can and more.
They want to make sure their child sees a bright future.
So, they’ve started A Race Against Blindness, a nonprofit to end childhood blindness.
Back in 2021, her then 8-year-old son, Luke, was diagnosed with a rare genetic condition that causes the loss of eyesight. It’s called retinitis pigmentosa and “he’s going blind.”
Luke
“We’ve struggled with a lot of grief and denial for a number of years as any parents would, but in 2023 we started the nonprofit,” said Kristina, a non-practicing nurse who now runs the nonprofit.
They had been told “there was nothing we could do about it” in a cure.
Now, they will be part of Tour de Scottsdale as a nonprofit trying to raise money to help the non-profit. They will ride in the event, as well. To help by donating visit here.
Luke, Kristina & Tyler
Back in 2021, the family, her ex-husband (Stephen), a physician, did some research and found a biotech company in the United Kingdom that has an animal model with Luke’s, condition. It’s so rare that only 2,000 kids or so have the condition.
“The fact that they have an animal model that has it is wild,” Kristina said. “And they have treatments that they brought all the way through the animal clinical trials, and they're ready to launch into safety trials in humans.”
They have since networked with their healthcare community in the United States and have teamed up with the Mayo Clinic in Rochester, which has agreed to be a clinical site for a trial.
“We are fundraising to make this trial happen,” she said. “Hopefully we will be able to save the eyesight of 1000s of kids.”
More importantly, “we have real hope that it will work,” she said.
Now, as their website says, “We’re on the cusp of funding a clinical trial for a revolutionary new gene therapy. Our goal is to cure retinitis pigmentosa caused by Bardet-Biedl Syndrome (BBS) – a rare but devastating cause of childhood blindness.”
When first diagnosed, They didn’t want to tell Luke what he was up against.
“We just wanted him to enjoy his enjoy his childhood,” she said. “But, when we started the nonprofit, we knew we were going to be talking about the issue and advocating for it. We had to sit down and have a conversation with him about it. So, he knows.”
Of course, children know. He’s getting services at school and learning what assistance devices are available to him. He’s learning Braile.
“He’s just a normal, sweet 10-year-old kid,” Kristina said. “His eyesight right now is okay, 20-50 vision, but with his condition the first thing that happens is his retina actually starts to degenerate. He loses vision in low light … eventually, it’s like looking at life through a straw.”
He’s expected to be legally blind as a teenager, so time is of the essence.
“We decided this year we’re going to do everything we can to launch the clinical trial,” she said.
And the race is on!
To learn more about Race Against Blindness, visit A Race Against Blindness - Nonprofit funding sight-saving research.
