Save Sight Now

Committed to Curing Childhood Blindness

Save Sight Now is a parent-led nonprofit that directly funds translational research to accelerate treatments for Usher syndrome type 1B. We partner with leading scientists to move promising therapies out of the lab and toward the clinic, with a focus on speed, rigor, and impact for children with Usher syndrome type 1B, who are born deaf, without balance, and experience progressive vision loss beginning in early childhood.

Save Sight Now is a California-based, Bay Area parent-led nonprofit focused on funding urgent, translational research to develop treatments for Usher syndrome type 1B—a rare inherited retinal disease and the leading genetic cause of combined deaf-blindness in children. Our work is centered on disciplined, clinic-oriented science, and we collaborate closely with industry partners, researchers, and patient families to accelerate credible pathways toward human clinical trials.

Founded in 2019, Save Sight Now was initially fiscally sponsored by the Foundation Fighting Blindness and transitioned to full independence in 2025. To date, we have raised over $3 million to support early translational efforts and strategic research programs. As our work advances toward clinical readiness, the organization is entering a critical growth phase that requires professional fundraising leadership to meaningfully expand revenue and support the next stage of scientific impact.

Social Links:

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