Today we’d like to introduce you to Dr. Steve And Kristina Johnston.
Hi Dr. Steve and Kristina, it’s an honor to have you on the platform. Thanks for taking the time to share your story with us – to start maybe you can share some of your backstory with our readers?
We started A Race Against Blindness after our son, Luke, was diagnosed with Bardet-Biedl Syndrome (BBS), a rare genetic disorder that causes progressive blindness among other challenges. As parents, we were devastated — but determined. We decided to channel our fear into purpose and founded this nonprofit to raise awareness, fund research and bring hope to other families walking a similar path. What began as a deeply personal journey has become a community-wide mission. Every dollar we raise fuels groundbreaking research that could preserve sight for children like Luke. Along the way, we’ve met countless families, scientists and supporters who remind us every day that hope is worth fighting for.
Would you say it’s been a smooth road, and if not what are some of the biggest challenges you’ve faced along the way?
It has been anything but smooth. Receiving a rare disease diagnosis for your child flips your world upside down. There is no roadmap, no simple answer — just a lot of trial and error, emotion and advocacy. Learning to navigate the medical system, balancing work and homeschool, and building a nonprofit from scratch was overwhelming. There were sleepless nights filled with uncertainty and fear, especially early on. What kept us going was Luke. His strength, curiosity and love for life inspire us daily. The hardest parts have become the most meaningful chapters in our story.
Thanks for sharing that. So, maybe next you can tell us a bit more about your business?
A Race Against Blindness is a nonprofit dedicated to funding research that can stop or slow the vision loss caused by Bardet-Biedl Syndrome. We run engaging sweepstakes-style fundraisers that rally the overlanding and adventure community around an incredible cause. People can enter to win fully built-out vehicles, trailers and gear, all while helping fund treatment for kids like our son. What sets us apart is our personal connection and transparency. Every giveaway is rooted in real stories and real families, and 100% of proceeds go to advancing medical research. We are most proud of our ability to turn a terrifying diagnosis into a movement of hope, action and impact.
How can people work with you, collaborate with you or support you?
There are so many ways to support our mission:
– Enter our current fundraiser at araceagainstblindness.org
– Follow and share our story on Instagram and Facebook
– Sponsor or donate items for our next fundraiser
– Host your own awareness event or fundraiser in your community
– Collaborate with us as a brand, influencer or fellow nonprofit
Every share, dollar and conversation helps us push research forward — bringing us one step closer to saving children’s sight.
Pricing:
- Entry bundles for fundraisers typically start at $10
- Early donors often receive exclusive access to higher entry multipliers (e.g., 6X entries), available for a limited time at the start of each campaign
- Every entry supports vision-saving research for children with Bardet-Biedl Syndrome (BBS)
Contact Info:
- Website: https://araceagainstblindness.org/
- Instagram: https://www.instagram.com/a.race.against.blindness/
- Facebook: https://www.facebook.com/a.race.against.blindness
- Youtube: https://www.youtube.com/@A.Race.Against.Blindness
- Other: team@araceagainstblindness.org
Image Credits
Kristi Kienholz Photography
Erica Jon Photography
