Our story
From diagnosis to action
In August 2018, five months after our daughter’s birth and after learning of her profound deafness, we received her genetic test results. She was diagnosed with Usher syndrome type 1B, a rare genetic condition caused by variants in the MYO7A gene.
Children with USH1B are born deaf, experience severe balance challenges, and progressively lose their vision. There is currently no approved treatment, and the disease progresses over time.
Save Sight Now was founded to respond to that reality by directly funding the research needed to move potential treatments out of the lab and toward the clinic.
Bridging the gap.
The science is there, but the funding is not.
Accelerating USH1B Research
Save Sight Now is a parent-led organization whose primary goal is identifying and funding promising research that can benefit those living with Retinitis Pigmentosa due to Usher syndrome Type 1B.
In 2019, we partnered with the Foundation Fighting Blindness, the world’s leading inherited retinal disease foundation, to advance our mission. What began as a fiscally sponsored project has grown into an independent nonprofit—now leading the charge to accelerate treatments for Usher syndrome type 1B. We continue to collaborate with FFB on select research initiatives, while moving swiftly as an agile, mission-driven organization focused on accelerating treatments for USH1B.
How it started
What began as a personal fight for our daughter’s future quickly became something bigger. Faced with a rare diagnosis and no treatment options, we realized that change wouldn’t come unless families like ours helped lead it. So we built Save Sight Now to move promising science out of the lab and into clinical trials.