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

SAN RAFAEL — 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.

At five months old, Lia was diagnosed with USH1B. It’s a genetic disorder that causes issues with balance, deafness, hearing and, over time, vision loss. When Lia was born, she had already lost her night vision.

“Retinal swelling happens with maybe less than half of all Usher Syndrome patients. So it’s definitely causing some blurry vision,” said Rosalyn.

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.

“We actually contacted the Foundation Fighting Blindness, who is the biggest international inherited retinal disease foundation and we pitched this idea,” said Justin Porcano. “We are happy to raise money for your benefit if we can ensure that the funding is restricted for USH1B research.”

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.