Arizona Parents Transform Donated Van Into Charity Funding Inherited Blindness Research

An Arizona couple has turned their son's rare medical diagnosis into a charitable organization that reports providing $6.1 million in research grants for inherited retinal diseases. According to A Race Against Blindness, based in Gilbert, Arizona, the initiative was established following their son Luke's 2020 diagnosis with Bardet-Biedl syndrome (BBS).

A Family Diagnosis and Response

In 2020, physician Stephen Johnston and nurse Kristina Johnston learned their son Luke had Bardet-Biedl syndrome, a rare genetic disorder that can cause progressive vision loss, obesity, kidney abnormalities, and other complications. Facing uncertainty regarding treatment options, the parents established A Race Against Blindness to support research into conditions that receive limited public attention.

The First Adventure Van Fundraiser

To launch the charity, Stephen Johnston donated a custom-built adventure van purchased from 27North, valued at approximately $250,000, to serve as the grand prize for the organization's inaugural sweepstakes. The charity utilized the vehicle sweepstakes model to attract a broader audience and generate funds. By the end of 2024, the organisation reported paying out $3 million in research grants.

Research Grants for Gene Therapy and Beyond

A Race Against Blindness reports total funding of $6.1 million distributed toward research projects:

• AXV-101 Gene Therapy Support: The charity reported providing $5.1 million to Axovia Therapeutics for an investigational gene-therapy program aimed at Bardet-Biedl syndrome type 1 (BBS1), with grants awarded across 2024, 2025, and early 2026.
• Conference and Gene-Agnostic Research: In May 2026, the charity funded the annual BBS conference, and in June 2026, it announced a $1 million grant alongside the Foundation Fighting Blindness and the RD Fund for gene-agnostic research.

Verification and Public Records

A Race Against Blindness is registered as a US 501(c)(3) public charity in Gilbert, Arizona. Its nonprofit registration and tax filings can be independently reviewed through ProPublica's Nonprofit Explorer or verified using its employer identification number.