Bay Area couple raises funds to research rare genetic disorder that causes blindness and deafness

News report by CBS NEWS Bay Area | 28.02.2023


Two Bay Area parents have created a global organization that is raising funds to research a genetic disorder that robs children of their sight and hearing.

Marin couple Rosalyn and Justin Porcano created the global organization called Save Sight Now. The nonprofit helps fund research for one of the leading causes of childhood deaf and blindness, Usher syndrome type 1B or USH1B.

The inspiration is driven by a small but mighty force—their four-year-old daughter Lia.

Within a year of the diagnosis, Lia’s parents wanted to do all they could to help their daughter navigate the world independently. Soon they discovered there was a great need for more research on the rare disease.

Just four years later, their organization has been able to raise nearly two million dollars. Right now, they are funding four research projects aimed at creating treatments for their daughter and other children like her.

On those hard days, they say Lia is what keeps them going. To learn more about Save Sight Now, visit the organization’s website.

If you’d like to help us fund groundbreaking research to defeat Usher syndrome, click the Donate button.