WELCOME MESSAGE
Our Team
A Race Against Blindness, a 501(c)(3) nonprofit organization established in early 2023, has quickly gained national recognition. We are currently registered in all U.S. states that require or offer charitable registration, and we voluntarily report annually where applicable.
Transparency is one of our core values, reflecting our deep commitment to accountability as we seek your support. In recognition of this dedication, we proudly earned the 2024 Platinum Seal of Transparency from Candid.
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 received any salary, stipend, or financial benefit for their service in 2023 or 2024.
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, 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 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, 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 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
We are funding sight-saving clinical trials to treat childhood blindness.
At A Race Against Blindness, we channel the urgency of our mission into action.
Inspired by our personal story, we are committed to accelerating groundbreaking treatments for Bardet-Biedl Syndrome (BBS) and other genetic conditions causing retinal degeneration.
We were told there was no cure
Today, a highly promising clinical trial is advancing.
Because of you, A Race Against Blindness granted $3 million to support this trial.
RETINITIS PIMENTOSA:A GLOBAL DISEASE
Retinitis pigmentosa (RP) can be caused by many conditions. Luke’s condition is caused by Bardet-Biedl Syndrome (BBS), which affects multiple organ systems, including the eyes. There is a slow, progressive loss of vision until many BBS patients become blind in their teenage years.
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
2024: A YEAR OF IMPACT
Historic Grantmaking
From the start of A Race Against Blindness, we sought to raise funds for clinical trials to end childhood blindness.
Grant 1: $1 Million - October 2024
- On October 15, 2024, we made our first $1 million grant to support Axovia Therapeutics’ planned clinical trial for AXV-101, a gene therapy targeting BBS1. This innovative treatment concept aims to prevent blindness and mitigate other health impacts for children with BBS. Clinical trials are could begin in the UK in late-2025, with potential to expand to the United States.
“We are advancing the AXV-101 program and preparing to initiate the first clinical study in late-2025. We are immensely grateful for this funding from A Race Against Blindness,” said Phil Beales, Chief Executive Officer and Co-Founder at Axovia Therapeutics.
Grant 2: $2 Million - December 2024
- In December, A Race Against Blindness was humbled to end 2024 with a second grant for $2 million to further fund the Axovia Therapeutics planned clinical trial.
- This is a huge milestone in advancing the research, but much work and funding remains to ensure the clinical trial's success.
From the bottom of our hearts, thank you to everyone who supported our mission in 2024 to make $3 million in grant funding possible.
2024: A YEAR OF IMPACT
Nationally Recognized Charity
A Race Against Blindness has rapidly earned national recognition for our impactful mission.
Fully compliant with charitable regulations, we are currently registered in all U.S. states that require or offer charitable registration, and we voluntarily report annually where applicable.
In 2024, we were honored to receive the Candid Platinum Seal of Transparency, reflecting our unwavering commitment to accountability and transparency.
We are committed to absolute transparency with our sweepstakes.
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A third-party sweepstakes administrator randomly select the winners.
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Winner announcements are livestreamed on social media.
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Previous sweepstakes winners are listed on our website.
Innovative Fundraising + Marketing
Through our innovative fundraising model of giveaway sweepstakes, A Race Against Blindness inspired thousands to join our mission.
A Race Against Blindness began as a mission born from our son Luke’s diagnosis with Bardet-Biedl Syndrome (BBS).
In 2024, we offered once-in-a-lifetime prizes: dream cars, Disney vacations, adventure vans, and even Taylor Swift concert tickets.
As our name indicates, we are in a race against time. We knew we needed to raise funds and awareness quickly for this rare disease, and we didn’t have the luxury of years or decades to build a fundraising program.
So, our bold and innovative strategy was to offer exciting sweepstakes.
We are also thrilled to share that our efforts have earned A Race Against Blindness the prestigious Platinum Seal of Transparency from Candid, the highest recognition for nonprofit transparency.
We invested heavily in social media marketing and digital ads to make this fundraising strategy successful.
This bold strategy ensured we successfully granted $3 million in 2024 to a very promising clinical trial. Talk about a return on investment!
A Race Against Blindness is grateful or the many powerful partnerships that make this impact possible.
Corporate Partners
- Rossmönster
- OVR MAG
- Moore Expo
- Taruca Awnings
- Intrepid Rooftop Tents
- XTrusion Overland
- Red Arc
- Overland Addict
- Pro Eagle
- 27North
- Aluminess
- Warner Vans
- Doetsch Off-Road
- KC Hilites
- Addictive Desert Designs
- Foutz Motorsports
- KMC Wheels
- Baja Design Lights
- Cooper Tires
- Black Rhino Wheels
- Rago Fabrication
- Dobinsons Suspension
- Expedition Trailers
- Backroads Overland Co
- El-Tour
- M3 Karate
- Affinity Racing
Nonprofit Partners
We appreciate our partnership with the Bardet-Biedl Syndrome Foundation, for their leadership, providing families with resources, developing the CRIBBS Registry, and hosting an annual meeting for the BBS community
Thank you to the Families Fighting Blindness charity for their leadership, raising funds with the annual Turkey Trot, and loving example of families changing lives.
We deeply appreciate the Foundation Fighting Blindness for their pioneering leadership in funding groundbreaking vision research. Their successful model has inspired A Race Against Blindness to champion private philanthropy in advancing research efforts.
“We began this journey to help our son, but it has grown into something far bigger.”
Dr. Steve Johnston
(Father/Founder)
"One million thank-you's to each and every one of you who has supported us on this journey."
Kristina Johnston
(Mother/Founder)
Partnerships
We are thankful for the opportunity forged by Axovia Therapeutics to support ground breaking subretinal gene therapy research.
Grantee Spotlight:
A Race Against Blindness is proud to support Axovia Therapeutics, a leader in subretinal gene therapy research, as the recipient of our 2024 grant funding. This decision was made after conducting extensive due diligence, including collaboration with leading ophthalmological experts from the Mayo Clinic and other esteemed institutions.
Through rigorous research and communication, we confirmed Axovia’s conclusions that their innovative approach has a strong scientific backing and potential for success. Their lead program, AXV-101, builds on the proven model of Luxturna—a breakthrough gene therapy for retinal disease—providing strong evidence of the viability of Axovia’s efforts to combat blindness caused by BBS1 mutations.
Funding from A Race Against Blindness will support Axovia’s critical near-term milestones, including advancement of a planned clinical study in the United Kingdom that may begin late-2025.
We are honored to be part of this groundbreaking journey and look forward to the transformative impact of Axovia Therapeutics’ work
*A Race Against Blindness has no financial interest in Axovia Therapeutics.
Financial Overview
A Race Against Blindness is deeply committed to transparency and accountability in our financial practices
Our Board of Directors received no compensation in 2024, and we adhere to a conservative spending philosophy. This ensures that funding is directed toward advancing critical research.
In 2024, we awarded two major grants totaling $3 million to propel the clinical trial forward:
- October 2024: $1 million grant
- December 2024: $2 million grant
Even with these historic investments, we closed the year in a strong financial position, ensuring that we remain well-equipped for the next phase of our mission
Statement of Financial Position
As of December 31, 2024
- Current Assets: $1,070,052.06
- Liabilities: $146,634.75
- Net Revenue: $732,546.00
- Grant 1 October 2024: $1,000,000.00
- Grant 2 December 2024: $2,000,000.00
Racing Ahead
A Race Against Blindness began this journey to help Luke. But, it has grown into something far bigger.
We will keep pushing, fundraising, and believing we can save children's eyesight affected by BBS/RP and eventually make even more significant impacts for the rare disease community.
As we move into 2025, our goals are ambitious but vital:
- 1. Funding Additional Clinical Trials A Race Against Blindness will work closely with industry experts to explore the best sight-saving opportunities. With your support, we will fund the most promising clinical trials and therapeutic options.
- 2. Increasing Awareness We will continue to raise awareness of the urgent need for sight-saving research through strategic partnerships, media outreach, and our innovative sweepstakes fundraising model.
You are giving hope in the race to end childhood blindness.
Thank you for supporting A Race Against Blindness to make our 2024 impact possible. Let’s keep racing ahead—until every child can see their future.