From diagnosis to action
Five months after our daughter was born, we learned she had Usher syndrome type 1B, a rare genetic disease caused by mutations in MYO7A.
Children with USH1B are born deaf, face severe balance challenges, and progressively lose their vision. With no approved treatment, Save Sight Now was created to change that — funding research to move promising therapies from the lab toward patients.
The science is here.
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.