Our story
August 2018 – 5 months after Lia’s birth, and after learning of her profound deafness, we received Lia’s genetic test results. Lia was diagnosed with a rare genetic disease – Usher Syndrome Type 1B - due to variants in the MYO7A gene. In addition to congenital deafness and severe balance issues, Lia was also progressively losing her vision. We were devastated.
Most children with USH1B are legally blind before they graduate high school. There is currently no treatment for Usher syndrome type 1B, and time is not on our side; but we fight to save her vision and thousands of others, because how could we not?
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.