A Race Against Blindness

Our Mission

A Race Against Blindness is a 501(c)(3) nonprofit organization based in Gilbert committed to funding groundbreaking sight-saving research and advancing clinical trials to combat pediatric inherited retinal diseases. Our focus is on Retinitis Pigmentosa (RP) caused by Bardet-Biedl Syndrome 1 (BBS1)—a devastating genetic disorder that leads to progressive vision loss and eventual blindness in children.

Founded in 2023, our organization was born from a deeply personal journey. When our son, Luke, was diagnosed with BBS1-related RP, we were told there was nothing we could do. But we refused to accept that answer. Today, we stand at the forefront of an urgent race to save sight, fueled by private philanthropy, scientific partnerships, and an unwavering belief in the power of medical breakthroughs.

Turning Hope Into Action: The Power of Philanthropy

Traditional funding mechanisms often overlook rare diseases, leaving life-changing research and clinical trials unfunded. Recognizing this gap, A Race Against Blindness has channeled private funding into action, ensuring that children affected by RP/BBS1 have a chance at a brighter future.

In 2024, we made history with $3 million of total grant funding to Axovia Therapeutics, supporting the development of AXV101, a groundbreaking gene therapy aimed at preventing blindness in children with RP/BBS1. This funding has propelled Axovia’s research forward, bringing it to the brink of clinical trials, which are expected to launch in the United Kingdom in mid-2025.

With this milestone achievement, we have demonstrated that bold, focused philanthropy can drive medical progress. However, the journey is far from over. We must continue funding this therapy through clinical trials and expanding our efforts to explore additional sight-saving treatments for children worldwide.

A Race Against Time: The Need for Continued Funding

For children with RP/BBS1, every passing year brings further vision loss. It is truly a race against blindness, and we are committed to ensuring that this promising therapy reaches clinical trials and, ultimately, the children who need it most.

• The Next Phase: Our goal in 2025 and beyond is to secure the remaining funding necessary to support Axovia’s clinical trial efforts through completion.
• Expanding Research: Beyond RP/BBS1, we are exploring additional gene therapies and early intervention treatments that could change the future of pediatric retinal disease.
• Raising Awareness: Through education, advocacy, and strategic partnerships, we are ensuring that families, researchers, and the medical community remain engaged in the fight against childhood blindness.

Join the Race

We will not stop until every child facing blindness has access to the treatments they deserve. With continued philanthropic support, we can drive scientific breakthroughs and bring life-changing therapies to families across the world.

Together, we can win this race against blindness.

Learn more and support our mission at www.ARaceAgainstBlindness.org