Ending Childhood Blindness
Children born deaf are now rapidly losing their vision—and the science to save their sight exists today. Save Sight Now is working to bring those treatments to children before it’s too late. We are a science-driven nonprofit accelerating the most promising approaches for Usher syndrome type 1B.
Built to Accelerate a Treatment
More than a funding organization.
A patient-driven research engine.
Save Sight Now identifies the critical barriers slowing progress in USH1B, brings together the expertise needed to address them, and prioritizes the research with the greatest potential to move treatments toward patients.
Multiple Shots on Goal
We advance several credible therapeutic paths in parallel rather than depend on a single technology.
Evidence-Gated Funding
We identify the critical question, fund the work needed to answer it, then advance, pivot, or stop based on the results.
Built for Translation
We evaluate more than the science—considering delivery, safety, manufacturing, regulatory strategy, and the path to patients
From Diagnosis to Action
How one diagnosis became a mission to cure childhood blindness.
Our daughter was born in March 2018. Six hours later, she failed her newborn hearing screening. At six months old, we learned the cause: Usher syndrome type 1B—one of the most common and aggressive forms of combined genetic deaf-blindness.
We were devastated—but unwilling to accept that diagnosis as her future.
Before her first birthday, we partnered with the Foundation Fighting Blindness and launched Save Sight Now. In just seven years, we raised $3 million and funded seven critical research projects — from animal models to international natural history studies to treatment development.
Today, Save Sight Now is a parent-led, science-driven nonprofit focused on advancing treatments for Usher syndrome type 1B — accelerating the most promising research to save the vision of thousands of children and young adults.
“Save Sight Now is building a therapeutic portfolio with the strategic focus of a biotech and the unrelenting passion of a family-driven effort. That combination is unique and unstoppable in this space, and I argue, will have the highest success rate of bringing transformative medicines to patients.”
- Ashley Winslow, PhD, CEO & CSO, Odylia Therapeutics
What is Usher syndrome
Usher syndrome is a rare genetic condition that causes both hearing and vision loss. It’s classified into three types—USH 1, 2, and 3—based on the severity and onset of symptoms. Type 1 is the most severe, marked by profound hearing loss at birth, early-onset progressive vision loss, and significant balance challenges due to vestibular dysfunction.
Usher Syndrome Type 1B is the most common subtype of Type 1. It’s caused by mutations in the MYO7A gene, which disrupts the production of a protein critical to the function of sensory cells in the inner ear and retina. Children with Usher 1B are born deaf, struggle with balance from infancy, and begin to lose their vision in early childhood—typically starting with night blindness and progressing to tunnel vision. The condition worsens over time and eventually leads to complete blindness.
How You Can Help
Donate
Fuel groundbreaking research to save the sight of children with Usher syndrome type 1B. Every gift moves us closer to a cure. DONATE HERE
Start a Fundraiser
Turn your birthday, race, or personal milestone into a powerful fundraiser. It’s easy to start—and every dollar counts. Contact us to learn more
Attend an Event
Join our community in person. From galas to golf tournaments, your presence helps fund critical vision research. Subscribe to our Newsletter below
The science exists today.
Help bring us fund vision-saving treatments before it’s too late.
