Unwavering Commitment to the Community We Serve
Advocating for the communities affected by retinitis pigmentosa, Bardet-Biedl syndrome, blindness and low-vision disorders is the key mission of our non-profit organization.
Our Values
We operate on a very structured basis when choosing how to allocate limited resources. We’re currently supporting Axovia through a sight-saving clinical trial with a solid medical and scientific premise. When we take a donation, it’s 100% earmarked toward this trial – a subretinal gene therapy that can cure Bardet-Biedl syndrome causing retinitis pigmentosa.
Elevating the Rare and Ultra Rare Disease Communities
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.
Meet the Team
Steve Johnston, MD
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 reseearch 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.
Kristina Johnston, RN
Mom vs. Blindness
As a founding partner of A Race Against Blindness, Kristina has a dedicated mission to support research and source treatment for children suffering from progressive blindness. Although her quest began with the diagnosis of her young son, Luke, she has ambitious goals to help thousands of children and families. Kristina has experience as a registered nurse, legal nurse consultant, special education teacher, realtor, and entrepreneur. She also has a deep love for the sport of triathlon, namely for the extreme discipline and mental toughness required for success. As a 3x Ironman athlete, she looks forward to raising awareness with each future race that she conquers as part of A Race Against Blindness.
Shelley Kramer
Mimi vs. Blindness
Shelley Kramer serves as the Treasurer for A Race Against Blindness. Shelley hails from an interesting background in entrepreneurship, business development and operations, as well as sales. Together with her husband, Dan Kramer, they have created and nurtured a wildly successful business in the unique space of gems and mineral specimens.
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.