There is hope for childhood blindness.

We’re Funding Sight-Saving Clinical Trials.

We’re on the cusp of funding a clinical trial for a revolutionary new gene therapy. Our goal is to cure retinitis pigmentosa caused by Bardet-Biedl Syndrome (BBS) – a rare but devastating cause of childhood blindness.

We have a chance to change the future for children like Luke.

Luke is 10 years old. He is a sweet, gentle, and big-hearted boy. If we do nothing, Luke will slowly lose his vision by the time he is in his teens. And with that will come the loss of many of the activities and things he currently knows and loves: riding a bike, playing with Pokémon cards, competing in karate, or building Legos. Imagine the fear and suffering you would feel if that was your reality.

Groundbreaking Research

The medical research involved in vision saving treatment and restorative therapy is advancing rapidly. This is excellent news! However, funding is significantly limited. Private funding, such as the money we raise, remains the main driver for much of this innovation. Your support is vital to saving children’s vision.

About RP

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.

You Can Help!

We greatly appreciate the support of anyone who wants to be a part of A Race Against Blindness. You can even host your own fundraiser (bake sale, race event, car wash, etc!) or volunteer in other ways. Regardless of how, we’d love to work with you. Reach out, and let’s coordinate how to beat childhood blindness together.

Adventure Van Fundraiser

Our nonprofit is funding research to bring a new retinal gene therapy to clinical trials in 2024. All of the monies raised in this event go directly to funding that groundbreaking, sight-saving treatment. YOU will help cure childhood blindness with your entry to win.

Upcoming Events

Do you like to win amazing prizes and want to help beat childhood blindness? This is the place! Our giveaways and auctions have something incredible for everyone. We hope you win something amazing and THANK YOU for supporting our cause.

Our Team

We are a diverse, motivated, talented and enthusiastic organization. We have all been deeply moved by Luke’s diagnosis and are eager to save the eyesight of our children and thousands of others.

Our Blog

BBS-Associated Vision Loss: Mechanisms, Progression, and Subtype Variability

Bardet-Biedl Syndrome (BBS) is a rare and complex genetic disorder that affects multiple systems of the body. This condition is…

The Genetic Variants of Bardet-Biedl Syndrome

BBS is a genetically heterogeneous disorder caused by mutations in various genes, impacting the proper function of cilia, the tiny…

Diagnostic Process for Bardet-Biedl Syndrome

Bardet-Biedl Syndrome (BBS) manifests through a combination of symptoms, which can vary in severity among affected individuals…

Bardet-Biedl Syndrome: Understanding a Rare Genetic Disorder

Bardet-Biedl Syndrome is considered rare, with an estimated prevalence of about 1 in 100,000 to 1 in 160,000 individuals worldwide…

Our Blog

BBS-Associated Vision Loss: Mechanisms, Progression, and Subtype Variability

Bardet-Biedl Syndrome (BBS) is a rare and complex genetic disorder that affects multiple systems of the body. This condition is…

The Genetic Variants of Bardet-Biedl Syndrome

BBS is a genetically heterogeneous disorder caused by mutations in various genes, impacting the proper function of cilia, the tiny…

Diagnostic Process for Bardet-Biedl Syndrome

Bardet-Biedl Syndrome (BBS) manifests through a combination of symptoms, which can vary in severity among affected individuals…

Bardet-Biedl Syndrome: Understanding a Rare Genetic Disorder

Bardet-Biedl Syndrome is considered rare, with an estimated prevalence of about 1 in 100,000 to 1 in 160,000 individuals worldwide…