Committed to Curing Childhood Blindness
Children with Usher syndrome type 1B are born deaf, without balance—and now, they’re rapidly losing their sight.
Save Sight Now is a parent-led nonprofit funding urgent research to save their vision. We're working with top scientists to accelerate treatments—and potential cures. But we can't do it alone.
Our Story, Our Mission
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 six years, we’ve raised $2.5 million and funded seven critical research projects—from animal models to international natural history studies to treatment development.
Today, Save Sight Now is the leading nonprofit focused on Usher syndrome type 1B. We’re parent-led, science-driven, and racing to save the vision of thousands of children like Lia—before it’s too late.
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.
Unblocking the Path to a Treatment
We’re addressing the critical gaps that have stalled progress—creating reliable animal and cell models, funding natural history studies to define clinical endpoints, discovering potency assays, and investing in large gene delivery systems—so that researchers, biotech, and pharma can bring USH1B therapies to life.
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In just six years, we’ve raised nearly $2.5 million through grassroots fundraising—all directed toward critical research for Usher syndrome.
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We helped fund the creation of the first-ever genetically edited non-human primate model of Usher syndrome type 1B—developed by Dr. Martha Neuringer and OHSU—in collaboration with the Foundation Fighting Blindness.
We’re also funding Dr. Uwe Wolfrum’s work to develop and characterize a USH1B pig model and cohort, a powerful tool for future therapeutic research.
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We’re helping fund the international UNIRARE natural history study - 40 USH1B patients enrolled - organized by the Foundation Fighting Blindness, as well as the Light4Deaf natural history study at the Institut de la Vision and Isabelle Audo - 44 patients enrolled.
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To date, we’ve funded seven distinct research projects—including the creation of a USH1B cell line at OHSU with Dr. Kathleen Chirco, the investigation of potency assays in Dr. David Gamm’s lab, and research led by Dr. Brian Link at the Medical College of Wisconsin exploring the critical role of MYO7A in various retinal cell types to better understand Usher syndrome type 1B
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 to learn about upcoming events.
“We’re so grateful for what Rosalyn and Justin have built with Save Sight Now. Their work has given families like mine the hope we thought we’d lost.”
— Parent of a Child with USH1B
On Thursday, November 14th we had the absolute pleasure of hosting the 5th Anniversary Gift of Vision Gala. We are still basking in the afterglow of an incredibly successful event surrounded by the most loving and generous community of supporters.