Draft:Save Sight Now
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Save Sight Now
Save Sight Now is an American nonprofit organization that funds scientific research related to Usher syndrome type 1B, a rare inherited disorder characterized by congenital deafness, vestibular dysfunction, and progressive vision loss caused by retinitis pigmentosa. The organization was founded in 2018 and is based in San Rafael, California.[1]
Overview
Save Sight Now supports biomedical research aimed at understanding and developing potential treatments for Usher syndrome type 1B, a condition associated with mutations in the MYO7A gene. The nonprofit provides funding to academic and clinical researchers focused on disease models, translational research, and early-stage therapeutic development related to Usher syndrome type 1B.
The organization collaborates with research institutions in the United States and Europe and focuses on projects intended to advance scientific knowledge and enable future clinical studies related to Usher syndrome type 1B.
History
Save Sight Now was established in 2018 by Rosalyn and Justin Porcano following the diagnosis of their daughter with Usher syndrome type 1B.[2][3] In its early years, the organization operated under the fiscal sponsorship of the Foundation Fighting Blindness, which provided administrative and scientific grant-management support.
Between 2019 and 2024, Save Sight Now functioned as a donor-directed research initiative within this partnership, raising funds designated for Usher syndrome type 1B research.[2] In 2024, the organization transitioned to independent 501(c)(3) nonprofit status while continuing to collaborate with external research partners.
Research funding
Save Sight Now provides grant funding to researchers investigating the biological mechanisms and potential therapeutic approaches for Usher syndrome type 1B.[4]Funded research has included the development of animal and cellular disease models, genetic studies, and projects designed to support future clinical translation.
Research supported by the organization has been conducted at institutions in the United States and Europe, sometimes in coordination with broader inherited retinal disease research programs.
Partnerships
From its founding through 2024, Save Sight Now operated in partnership with the Foundation Fighting Blindness, which served as its fiscal sponsor and provided infrastructure for managing restricted research grants. During this period, Save Sight Now was listed as a funding partner on multiple research awards administered through the foundation.[4]
Media coverage
Save Sight Now has been featured in regional and national media outlets covering rare disease research and patient-led nonprofit initiatives. In 2023, CBS News Bay Area aired a segment on the organization’s founding and fundraising activities related to Usher syndrome research.[1]
Local newspapers, including the Petaluma Argus-Courier, have reported on the organization’s research funding efforts and community fundraising events. Save Sight Now has also been covered by rare disease and patient advocacy publications discussing its role in supporting Usher syndrome type 1B research.
References
- ^ a b "Bay Area couple raises funds to research rare genetic disorder that causes blindness and deafness - CBS San Francisco". www.cbsnews.com. 2023-02-28. Retrieved 2025-12-21.
- ^ a b "A family seeks a cure for Usher Syndrome". Petaluma Argus-Courier. 2023-07-27. Retrieved 2025-12-21.
- ^ "Marin parents rally for deaf toddler facing blindness". Marin Independent Journal. 2019-09-02. Retrieved 2025-12-21.
- ^ a b "Funded Grants FY24". Foundation Fighting Blindness. Retrieved 2025-12-21.
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