Arizona Family’s Charity Funds $6.1 Million in Retinal Disease Research

Stephen and Kristina Johnston founded the nonprofit A Race Against Blindness in Gilbert, Arizona, following their son Luke’s 2020 diagnosis with Bardet-Biedl syndrome. The rare genetic disorder can cause progressive vision loss alongside other health complications.

To jumpstart their fundraising, the couple donated a custom adventure van valued at approximately $250,000 as a prize for a sweepstakes. This unconventional approach helped the organization reach a broader audience and establish a model for future campaigns.

The charity has since directed $5.1 million toward an experimental gene therapy program, AXV-101, which targets the BBS1 gene. These funds have supported development, safety testing, and preparations for human clinical trials.

Beyond their initial focus, the organization has expanded its reach by contributing $1 million toward gene-agnostic research. This work aims to develop treatments that could benefit people across various types of inherited retinal conditions.