ChatGPT helps Justin and Rosalyn Porcano run Save Sight Now like a larger team, building presentations, grant materials, school notes, and donor outreach for the nonprofit they never expected to lead. Lia was 12 hours old when the first sign came that something was wrong. As Rosalyn recovered from surgery, Justin took their newborn for a hearing screen. Lia showed no response to sound. An audiologist said, “You don’t want it to be something syndromic like Usher syndrome.” Months later, genetic testing confirmed exactly that: Usher syndrome type 1B.
The diagnosis explained Lia’s profound deafness and carried even more devastating implications: Usher 1B also causes progressive vision loss. The triple-sensory disease affects hearing, vision, and balance.
Lia received cochlear implants at six months and had open-heart surgery before she turned one. Today, at eight, she is deaf, night-blind, and lives with severe balance loss. Because vision loss often accelerates in adolescence, the Porcanos know the window to rescue her future is closing.
Childhood is already changing for Lia: trick-or-treating ends early after dark, while balance loss means no bikes with friends and no gymnastics.
Her parents found research underway, but it was moving too slowly to help children like Lia keep their sight. Justin is an industrial designer and Rosalyn a private chef; neither had a background in genetics, drug development, clinical trials, fundraising, or nonprofit leadership, so they read papers late into the night, spoke with researchers, and learned how therapies are developed.
That search became Save Sight Now, an independent nonprofit advancing Usher 1B treatments. It has raised more than $4 million, built an expert advisory board, and now funds seven programs.
After work, once Lia is in bed, her parents begin their second shift. Justin uses ChatGPT to scan biomedical databases ClinVar and PubMed, compare guide RNAs and editors, prepare for calls with researchers and biotech companies, and pressure-test research roadmaps. Rosalyn uses it to draft donor outreach and teacher notes, plan events, and advocate for school accommodations that help Lia navigate deafness, vision loss, ADHD, and dyslexia.
Their weeks move between gene-editing research, grant writing, school advocacy, and calls with newly diagnosed families—work that would typically require researchers, nonprofit staff, fundraisers, and administrators. ChatGPT helps two parents learn faster and communicate more clearly as they work alongside advisors and researchers toward one goal: developing treatments in time to help Lia and other children with Usher syndrome keep their sight.
