Stephen Johnston, a full-time practicing physician, father, and founder of the nonprofit A Race Against Blindness recently appeared as a guest on the Everyday Ironman Podcast. He discussed his journey from being a self-proclaimed “non-athlete” to becoming an Ironman triathlete and using the sport as a symbolic message of resilience for his son, who is slowly losing his vision due to a rare genetic condition.
Stephen co-founded the nonprofit with his ex-wife in January 2023 after their son Luke was diagnosed with Bardet-Biedl syndrome-related retinitis pigmentosa, which is expected to make him legally blind by his teenage years. Turning pain into action, they aimed to raise awareness, and funds for research.
During the podcast, Stephen shared his personal journey, from being a “skinny fat” student and medical resident in his 30s to completing a Half Ironman in Victoria, Canada, in May 2023, with the goal of eventually tackling the full Ironman distance.
He shared, “I’m doing it for my son, to be an example for him. I’m trying to teach him how to do hard things and how you can do things that are challenging and tough. The whole point is that I’m not a triathlete. I’m not an endurance athlete. This does not come easy for me. But I wanted to do it anyway because I wanted to show him that you can do hard things no matter what.”
Stephen also discussed the urgency of finding a treatment for Luke, as they’re “racing against time and the degeneration of his retinal cells.”
He emphasized the importance of persistence, purpose, and passion, urging listeners to find a cause they’re passionate about and make a difference, even with small contributions. His dream is to raise enough funds to kickstart the clinical trials that could result in sight-saving treatment for his son and others like him.
To listen to Stephen Johnston’s inspiring story and learn more about his nonprofit’s efforts, listen to the Everyday Ironman episode at https://podcasts.apple.com/us/podcast/123-stephen-johnston/id1574121115?i=1000633579249.
About Stephen Johnston
Stephen Johnston, MD, MBA, is a father, radiologist, non-profit founder, and Ironman athlete. When he found out his nine-year-old son, Luke, was going blind as a result of a rare disease, he founded A Race Against Blindness to fund sight-saving research for his son and thousands of others like him.
Though Stephen is relatively new to the nonprofit world, he’s a man on a mission to raise $1 Million for a clinical trial and taking on challenges like Ironman to raise money and be an example for his son. So far, they’ve raised over six figures, been featured on GoodMorningAmerica.com and the Dan Karaty If I’m Being Honest podcast, and had TV spots in multiple major markets.
Stephen lives outside of Phoenix and spends his spare time training for his next Ironman and traveling with his family to create lifelong sighted memories for Luke.
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