When ‘No’ Isn’t an Option: The Advocacy Playbook Behind Save Sight Now

Isabel Dassinger and co-host Isaiah Fliessbach welcome Justin Porcano—industrial designer, dad, and co-founder (with wife Roslyn) of Save Sight Now—to unpack what real-world advocacy looks like when your child is facing Usher syndrome type 1B. Justin shares Leah’s story, why early newborn screening matters, and how their nonprofit has raised $2.4 million to fund seven research projects worldwide targeting large-gene delivery, disease models, and natural history studies. The conversation widens to the 63 million caregivers in the U.S., practical self-advocacy skills for kids using cochlear implants, and the emotional stamina it takes to “keep pulling the plow” through medical, school, and insurance systems. Justin also previews their November Mill Valley fundraiser and makes the case for building a global network so families in Europe and Australia can replicate what’s working.

Highlights

Save Sight Now’s mission-driven roadmap: from a single family’s crisis to a global, H1B-focused research network that others are now duplicating in Europe and Australia.
Real progress, real obstacles: large-gene delivery challenges, the need for better animal and cell models, and why natural history studies unlock clinical endpoints for the FDA.
Teaching self-advocacy early: Leah learns to speak up about cochlear implant batteries, classroom noise, and seating—small habits that build lifelong agency.
Caregiver reality check: navigating denied coverages, school services, and funding gaps while protecting your own bandwidth and resilience.
Quote of the Episode

“You just put your head down and pull the plow.” — Justin Porcano

Call to Action

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