“Lighting the Way for Lia” was hosted on April 22 by Patty Garbarino of Marin Sanitary Service and Lori and Jeff Brusati of T&B Sports. A group of community leaders gathered at Garbarino’s home for a special evening to introduce Save Sight Now, a San Rafael-based nonprofit dedicated to curing childhood blindness associated with Usher syndrome, the most common cause of deaf-blindness.
Save Sight Now was founded in 2018 when Rosalyn and Justin Porcano’s daughter, Lia, was diagnosed with Usher syndrome type 1B. Born deaf, Lia has a non-functioning vestibular system and is now quickly losing her vision. In the past four years, Save Sight Now has raised almost $2 million and is funding four promising research programs, including one at Oregon Health and Science University that created the first-ever non-human primate model with Usher syndrome type 1B.
“Knowing that this local charity is fighting to preserve the vision of children with Usher syndrome worldwide makes us all grateful to be a part of this underserved and necessary cause,” Garbarino said.
To learn more, visit savesightnow.org.
Be the first to comment on "GATHERING SHINES LIGHT ON A RARE DISEASE"