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A Race Against Blindness to participate in El Tour after ‘Fun’ time at Tour de Scottsdale

A Race Against Blindness is back at an El Tour event! The organization – a great, inspiring one – returns after having a fun and productive time at the Tour de Scottsdale in April.

“Scottsdale was FUN!” said Kristina Johnston. “It was my first cycling-only event and my gosh was it different than races I have previously done. This race felt like luxury compared to other events. Ironman racing is pure chaos from sun up to sun down. We are served cold pizza, chips, and soda after 10-16 hours of endurance racing.

Luke

“Tour de Scottsdale was a dream. Beautiful roads, a nice crowd, and the most delicious catered post-race meal I’ve ever experienced! We were blown away.”

Now, A Race Against Blindness will take to the Tucson roads to raise money for the nonprofit.

“We will absolutely be at El Tour de Tucson,” she said. “We can’t wait! We lived in Tucson for many years. Both of our kids were born at Northwest Medical Center. If I could move anywhere, I would likely venture back to Oro Valley. It will be so lovely to visit.”

Kristina and Stephen Johnston have started the nonprofit to make sure their child – and others – sees a bright future.

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.”

“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,” Kristina said recently. She is a non-practicing nurse who now runs the nonprofit fulltime.

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 in a recent interview. “Hopefully we will be able to save the eyesight of 1000s of kids.”

So, there is no stopping. They will pedal on!

They feel inspired after Tour de Scottsdale.

 

“We did have a positive impact in terms of raising awareness,” Kristina said. “I had our first-ever cycling jersey made and wore it for the first time that day. It was a very proud moment, and I will continue to wear it during rides. I hope to find other friends and kind souls who might want to wear one also and help us to raise awareness. It would be so special to see a sea of jerseys out there supporting our mission.”

The Johnston’s recently completed a big fundraiser raffling off a Storyteller Overland Adventure Van + $70,000 cash.

“It was very successful, but an enormous amount of work,” she said.

The family plans on traveling as well as preparing for El Tour in November.

“We still wholeheartedly believe in seeing and experiencing as much as we can while Luke still has good eyesight,” she said. “The clinical trial is full steam ahead. We meet with the research team regularly and hope to offer a significant grant to support the BBS community and the clinical trial. Our goal this year is to grant $1 million.

Adding, “we are well on our way, but we still have a long way to go”.but will hard as ever to get there.

To donate or register to ride for A Race Against Blindness click here: A Race Against Blindness.

To learn more about Race Against Blindness, visit A Race Against Blindness – Nonprofit funding sight-saving research.