Steve Johnston, MD, MBA: A Dad Fighting Against Blindness

Meet Luke, The Inspiration for The Race Against Blindness

Luke, at just 10 years old, displays an exceptional level of empathy.

He possesses a rare ability to perceive when others are in distress or need help. Such deep concern for others is unusual, especially for someone of his age. Moreover, he is profoundly kind-hearted and exudes a gentle and compassionate nature. He genuinely cares for his family, his pets, and his friends.

Luke’s capacity to genuinely appreciate and absorb the nuances of the world around him sets him apart. Though he may be reserved, his profound connection to the world and the people in it is unmistakable.

Finally, Luke is remarkably resilient for a child his age. He has faced significant physical and emotional challenges throughout his young life. He has endured multiple hospitalizations due to severe illnesses, including surgeries and even broken bones. Despite these adversities, he consistently bounces back and surmounts each obstacle.

Steve Johnston, MD, MBA

Dad vs. Blindness

The success of any organization is critically dependent on the importance of its mission to key members. Upon receiving the diagnosis that his son was going blind, nothing has been more important to Steve than championing the mission of A Race Against Blindness: support research and find a cure for retinitis pigmentosa caused by Bardet-Biedel Syndrome. Steve is uniquely qualified to achieve that goal. He is an MD/MBA with a vast understanding of the healthcare system, coupled with real-world experience in building companies, leading teams, and solving complex challenges.

We founded the nonprofit when we found out our son has a rare genetic condition and is slowly going blind. But that really only scratches the surface in terms of our motivation. Since learning of Luke’s diagnosis , we have become strongly connected to the rare-diseases community. While rare diseases are actually not unusual, with more than 7,000 diseases classified by the FDA as rare, each one individually often affects only a small number of people. Thus many rare diseases don’t receive enough attention and resources to help fund research for adequate treatments or even possible cures.