Submitted by event organizers.
Luke Johnston is a typical 9-year-old boy: full of energy, radiates happiness, loves to play Pokémon and ride his bike, and is eager to explore our world.
Luke recently learned that he is slowly going blind. His family has put their Arizona lives on pause, purchased camper vans, and come together to experience the Pacific Northwest for eight weeks this summer on a quest for visual memories before Luke’s vision begins to fade. Luke has an affinity for fishing, swimming in the beach surf, rock and fossil hunting, exploring waterfalls, trains, and playing laser tag by the light of the moon with a campfire burning for occasional warmth. As part of their summer mission the family is also focused on raising awareness of diseases that cause children to progressively lose their vision.
Luke has a rare condition called retinitis pigmentosa caused by Bardet-Biedl Syndrome that will cause progressive vision loss over the next few years, likely reaching legal blindness as a teen or young adult. Mom and Dad have started a 501c3 nonprofit, A Race Against Blindness, to support research and source treatment for Luke and thousands of other children losing their eyesight. As a physician and nurse with years of business experience, they have completely reprioritized their divorced lives and careers to live and work together as commitment to this important cause. Working alongside leading research teams in both the US and Europe, a cure is amazingly within reach! A Race Against Blindness is hoping to support human clinical trials for a miraculous treatment modality called retinal gene therapy that is showing promising results thus far in testing.
Please help us spread the word and raise awareness for this brave young man, his family, and his nonprofit organization. Luke resides in Arizona and selected the PNW for his quest given how beautifully different and majestic the landscape is compared to what he is used to in the desert. Suggestions for sights to see and visual memories to seek would be gratefully welcomed!
Tentative sights include Lake Crescent, Shi Shi Beach, Hoh Rainforest, Kalaloch Beach, Mount Rainier, Orcas Island and North Cascades.
