Family and friends work to raise millions for a 10-year-old's Retinitis Pigmentosa clinical trial

PHOENIX - Luke Johnston, 10, is slowly losing his eyesight. When his family found out about his rare diagnosis two years ago, they made it their mission to raise money for a cure. 

Getting closer and closer to their goal with each passing year, the Johnston family added up their fundraising totals at the end of 2024. 

Since starting their non-profit two years ago, they’ve raised a total of $3 million. 

"It has been a whirlwind. Unbelievable amount of work, rewarding and encouraging," says Christina Johnston, Luke's mom. 

Their non-profit is A Race Against Blindness. It's founded in support of their son, Luke, who is battling Retinitis Pigmentosa. 

It's a rare genetic disorder that causes patients to slowly lose their eyesight. 

Since being diagnosed two years ago, Luke’s eyesight has gotten worse. 

"We did have his annual retinal check-up on NYE and he has lost a lot of vision in the last two years. He has 10-to-20% of his visual field left, so it’s like he’s looking through a straw now," said his dad, Steve Johnston. 

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The non-profit’s goal is to raise enough money to help fund a clinical trial for the disease. 

They started out with a simple lemonade stand, organized by Luke’s friends, that earned the non-profit $10,000 and it only grew from there. 

"We did adventure van giveaway fundraisers, we did concert-based fundraisers, Taylor Swift tickets," said Steve. 

They need at least another couple million as a non-profit to help fund the clinical trial, but time is running out for Luke to benefit. 

"If he got into therapy for one of these trials in the next year, he could probably save the vision he has left. He’s a functional, good, happy kid still, but it won’t be long before he loses too much more vision that he won’t be a candidate for the type of trial we’re trying to get him into," said Steve. 

But whether Luke can be a part of the trial or not, the Johnston family will continue to fundraise in the hope of helping others. 

"We hope we can make a difference for Luke and impact his eyesight but it’s really about everyone going through this, losing their eyesight and anyone with a rare disease," said the Steve.