WELCOME MESSAGE
Our Team
Founded in 2023, A Race Against Blindness is a nonprofit organization based in Gilbert, Arizona, dedicated to ending childhood blindness caused by a rare genetic eye disease called Retinitis Pigmentosa (RP).
Our organization is guided by a passionate and dedicated Board of Directors of three members. In keeping with our commitment to integrity, none of our Board Members receive any salary, stipend, or financial benefit for their service. We are a family-founded and family-run nonprofit.
Steve Johnston, MD, MBA, Founder and CEO
Dad vs. BlindnessThe 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-Biedl Syndrome. Steve is uniquely qualified to achieve that goal. He is an MD/MBA with a vast understanding of the healthcare system and real-world experience in building companies, leading teams, and solving complex challenges.
Kristina Johnston, RN, MBA, Founder and Secretary
Mom vs. BlindnessAs 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, 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 4x Ironman athlete, she looks forward to raising awareness with each future race she conquers as part of A Race Against Blindness.
Shelley Kramer, Treasurer
Mimi vs. BlindnessShelley Kramer serves as the Treasurer for A Race Against Blindness. She hails from an interesting background in entrepreneurship, business development, operations, and sales. Together with her husband, Dan Kramer, they have created and nurtured a successful business in the unique space of gems and mineral specimens.
Steve Johnston, MD, MBA, Founder and CEO
Dad vs. BlindnessThe 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-Biedl Syndrome. Steve is uniquely qualified to achieve that goal. He is an MD/MBA with a vast understanding of the healthcare system and real-world experience in building companies, leading teams, and solving complex challenges.
Kristina Johnston, RN, MBA, Founder and Secretary
Mom vs. BlindnessAs 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, 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 4x Ironman athlete, she looks forward to raising awareness with each future race she conquers as part of A Race Against Blindness.
Shelley Kramer, Treasurer
Mimi vs. BlindnessShelley Kramer serves as the Treasurer for A Race Against Blindness. She hails from an interesting background in entrepreneurship, business development, operations, and sales. Together with her husband, Dan Kramer, they have created and nurtured a successful business in the unique space of gems and mineral specimens.
OUR MISSION
At A Race Against Blindness, our mission is clear: to end childhood blindness by funding groundbreaking research and advancing clinical trials.
We are focused on accelerating sight-saving treatments for Bardet-Biedl Syndrome (BBS) and other rare genetic conditions that cause retinal degeneration. BBS is one of many genetic conditions that can lead to Retinitis Pigmentosa (RP) and blindness in young children.
Our mission is deeply personal. Luke, our son, has been diagnosed with BBS1 and is actively losing his vision.
"This fight is not just for Luke--it's for every child and family facing the devastating imapct of blindness caused by BBS and RP. A Race Against Blindness is racing to find a cure."
We were told there was no cure.
But, we refuse to accept that answer.
There is hope.
Undeterred by the odds against us, we set out to find a cure.
Our journey began with a question:
Is anyone addressing Retinitis Pigmentosa caused by Bardet-Biedl syndrome (BBS)?
This year, we connected with leading researchers and clinicians in the United States and United Kingdom conducting groundbreaking research for BBS and RP.
We are committed to advancing treatments, raising awareness, and providing hope for families impacted by these rare and life-changing conditions.
RETINITIS PIMENTOSA:A GLOBAL DISEASE
BBS1 is a rare genetic disorder affecting approximately 1 in 70,000 to 100,000 children in Europe and North America. Its prevalence is significantly higher—up to 10 times greater—in the Middle East. In the United States and Canada, an estimated 3,000 individuals are living with BBS1. This condition often leads to progressive vision loss through RP and poses additional health challenges for families navigating its effects.
Global Prevalence
1 in 70,000 - 100,000 children in Europe and North America
An estimated 10X prevalence in the Middle East
3,000 Americans and Canadians have Retinitis Pigmentosa
2023: A YEAR OF LEARNING AND HOPE
2023 was a year of discovery, learning, and hope in our race against blindness.
As a new charity in the rare disease space, we took time to deeply understand the challenges families face and the gaps in funding that prevent progress.
We learned that traditional funding models often leave rare diseases behind, so we turned to philanthropy and private funding to ignite change.
Throughout the year, we felt incredible support from family, friends, colleagues, businesses, charities, media, and kind strangers.
Luke’s classmates hosted a lemonade stand in June that raised $10,000 from friends, neighbors, and kind strangers driving by.
A special thank you to Irene Snyder at Fox10 News in Arizona for covering this special fundraiser, which brought new awareness to RP and the mission of A Race Against Blindness.
Adventure Van Sweepstakes
Our first major initiative was ambitious: a sweepstakes to give away an Adventure Van. This unique prize was carefully chosen, inspired by our family’s journey to help Luke experience the beauty of the outdoors and special experiences before losing his vision.
The adventure van was more than a prize—it symbolized the urgency and hope driving our mission.
The response to our Adventure Van sweepstakes was incredible. Thousands from across America and Canada joined the campaign with entries, not only for a chance to win but also to support the fight against childhood blindness.
By the end of 2023, this initiative raised critical funds and paved the way for our next big step: helping fund a promising clinical trial in 2024.
“Congratulations to Eric A. from TX who won the Adventure Van!”
Dr. Steve Johnston
(Father/Founder)
“We are grateful to each and every person who supported our Adventure Van Fundraiser.” 🧡
Kristina Johnston
(Mother/Founder)
Financial Overview
As a newly established nonprofit, we are deeply committed to transparency and accountability in our financial practices. We are honored to share our year-end statement of financial position.
Additionally, our Board of Directors receives no compensation, and we adhere to a conservative spending philosophy. This ensures that the maximum amount of funds raised is directed toward advancing critical research.
Statement of Financial Position
As of December 31, 2023
- Current Assets: $190,365.20
- Liabilities: $2,705.20
- Net Revenue: $187,660.00
- Total Liabilities & Equity: $190,365.20
Looking Ahead
We are full of hope and gratitude for all the support we received in 2023.
The success of the nonprofit launch and the adventure van sweepstakes has inspired us to think even bigger in 2024.
We are committed to leveraging this innovative funding model to support groundbreaking research and deliver hope to more families. Together, we will continue to push the boundaries of what’s possible in rare disease funding.
Thank you for being a part of our incredible journey in 2023. As we look to the future, we invite you to stay connected, get involved, and join the race to end childhood blindness.
Let’s end childhood blindness.