A Race Against Blindness

Turning hard news into great purpose. 

APRIL 26, 2024
Photo of Dad, Son and dog in front of an adventure van. [Luke, Dad & Pickles]

In Photo: Luke, Dad & Pickles

Luke Johnston is a 10 year old boy who loves the colors blue and green. Luke enjoys Pokemon, Fortnite, going fishing and playing Chess. Luke has a family that loves him and a sweet pup named, “Pickles.” Luke also has a rare diagnosis of Bardet-Biedl Syndrome and is actively going blind. 

What is Bardet-Biedl Syndrome?

Bardet-Biedl Syndrome (BBS) is one of many genetic conditions that can cause retinitis pigmentosa/blindness and low-vision in young children. As children with BBS age, they progressively lose their vision. This vision loss is unique to each child with BBS – some lose their peripheral vision while others experience loss of sight directly in front of them and others lose their vision entirely. Exploring BBS and the experience of the children affected by this disease reveals that blindness is a spectrum and while there is currently no way to restore lost vision, we exist in a moment where stopping BBS in its tracks is possible in the not too distant future. 

Upon receiving Luke’s diagnosis, his parents – Kristina and Steve Johnston – set out on a mission to explore all ways in which they could help their son and create change for all children with a BBS diagnosis. The result was the launch of their non-profit, A Race Against Blindness, an organization dedicated to finding a cure for BBS. Through their efforts, Kristina and Steve connected with a UK-based biotech company, Axovia. Axovia is working on a promising clinical trial to cure BBS– having progressed to the point of being done with animal studies and are in preparation for human clinical trials. Upon successful funding, the planned clinical trials will take place at Mayo Clinic in Rochester, MN as soon as this year, 2024. And herein lies the opportunity for our community to make an impact – through sharing Luke’s story and donating to support the funding of these clinical trials. Now through May 31, 2024, you can  enter to win a 2023 Beast MODE and $70,000 cash with all funds raised going directly to support the efforts to cure BBS.

Where would you go if you were losing your sight? What would you want your child to see before they go blind?

These are questions no parent ever wants to face but these are questions that the Johnston family explored head on upon receiving Luke’s diagnosis. Their answer? The Summer of Sights tour – a #VanLife adventure that took their family from the beautiful deserts of Arizona to the lush, green world of the Pacific Northwest. The Johnston family chronicled their Summer of Sights tour on YouTube and Instagram and they are looking forward to their next adventure – a road trip from Missouri to the 2024 Overland Expo in Flagstaff, AZ where they look forward to meeting fellow vanlifers and telling their story at the Race Against Blindness expo booth. 

To learn more about A Race Against Blindness, please visit their website at araceagainstblindness.org

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