Turning hard news into great purpose. 

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.

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.