Save Sight Now

What Save Sight Now does

Save Sight Now is a parent-led, science-driven 501(c)(3) nonprofit founded in 2018 and headquartered in San Rafael, California, that funds translational research aimed at halting vision loss in children with Usher syndrome type 1B (USH1B), a genetic condition caused by mutations in the MYO7A gene that results in congenital deafness, vestibular dysfunction, and progressive retinal degeneration. The organization pursues a parallel therapeutic portfolio strategy, funding work across gene editing, whole-gene delivery, small molecule drug repurposing, and patient-derived testing models. To date it has raised approximately $2.4–3 million over six years and funded seven distinct research projects, including the first genetically edited non-human primate model of USH1B at OHSU, a USH1B pig model (Dr. Wolfrum), a zebrafish model at the Medical College of Wisconsin, a USH1B cell line, a MYO7A proximity ligation potency assay at the University of Wisconsin-Madison, and two international natural history studies totaling 84 enrolled patients (UNIRARE and Light4Deaf).

The organization's core products are research grant programs, an annual USH1B Research Workshop hosted at ARVO, and the annual Gift of Vision Gala. Its revenue model is entirely donation-based: grassroots individual donations processed via GoFundMe Pro (Classy), recurring monthly donors, donor-advised fund (DAF) and employer-matching gifts, peer-to-peer fundraisers, and large annual events. Save Sight Now operates a 5% indirect cost policy that channels an estimated 95% of donations to research, and is supported by Candid and Charity Navigator third-party nonprofit ratings. Scientific strategy is guided by an advisory board that includes the CEO & CSO of Odylia Therapeutics, and the organization partners with Foundation Fighting Blindness, OHSU, University of Wisconsin-Madison, Medical College of Wisconsin, Institut de la Vision, and a coalition of international parent-led USH1B groups (Save Sight Now Europe, USH1F Collaborative, Silent Sight Foundation, The Fairfield Fund).

Save Sight Now's customer segments are two-sided: the primary beneficiary population is families of children with USH1B (a rare-disease persona numbering in the low thousands globally), and the funding base consists of individual donors and community supporters. The organization does not sell products or services and has no traditional revenue stream; it became an independent 501(c)(3) in July 2025 after six years as a fiscally sponsored project of Foundation Fighting Blindness, and now operates without institutional equity or debt backing. Distribution is global in reach for donations but U.S.-anchored operationally, with research collaborations extending to France (Institut de la Vision) and other international sites.

Name

Save Sight Now

Legal name

Save Sight Now

Website

https://savesightnow.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Medical Research Nonprofit

NAICS

Voluntary Health Organizations (813212), Scientific Research and Development Services (5417), Research and Development in Biotechnology (except Nanobiotechnology) (541714)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Rare Pediatric & Congenital Disorder Therapies (HLAIAIAN), Genetic & Genomic Rare Disease Therapeutics (HLAIAIAA)

Keywords

• Rare disease research
• Usher syndrome research
• Gene therapy funding
• Medical research nonprofit
• Charitable donations

Headquarters

HQ city

San Rafael

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Technology or R&D, Marketing or Sales, Personnel

Revenue model

1. Individual Donations: Grassroots donations from individuals supporting USH1B research mission. Includes one-time and monthly recurring donations. $250,000 matching campaign doubling all donations.
2. Event Fundraising: Revenue from galas, tournaments, and community events. The Gift of Vision 2024 Gala raised $406,000.
3. Corporate/Employer Matching: Donor-Advised Fund (DAF) donations and employer matching gift programs. EIN 33-2281804 enables tax-deductible donations.
4. Grant Funding: Partnership with Foundation Fighting Blindness for research grant administration and funding.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels6 records

Core offering

Save Sight Now is a 501(c)(3) nonprofit that raises charitable donations and grants to fund translational research into treatments for Usher syndrome type 1B (USH1B). It pursues a portfolio of therapeutic approaches in parallel—gene editing, whole-gene delivery, small-molecule drug repurposing, and patient-derived testing models—and fills pre-clinical research gaps such as animal models (non-human primate, zebrafish, pig), cell lines, natural history studies, and potency assays so that biotech and pharma can advance USH1B therapies toward clinical trials.

Product overview

Save Sight Now is a science-driven 501(c)(3) nonprofit organization that funds research for Usher syndrome type 1B treatments. The organization operates as a single unified mission rather than a platform-plus-modules architecture. Its core activities include: (1) Research Funding Programs that support seven distinct research projects including natural history studies, animal models, cell lines, and potency assays; (2) Donation Processing via GoFundMe Pro; (3) Annual USH1B Research Workshops at ARVO conferences; and (4) Gift of Vision Gala fundraising events.

Differentiator

Problem solved

Functional benefit

Products and services

• USH1B Research Funding Programs Grant funding provided to academic researchers and clinicians to develop preclinical tools and translational research for Usher syndrome type 1B (USH1B) therapeutics, including natural history studies, animal models (non-human primate, zebrafish, pig), USH1B cell lines, and MYO7A potency assays.
• Charitable Donation Processing Charitable donation processing service enabling individual donors, monthly givers, and corporate matching-gift programs to make tax-deductible contributions (EIN 33-2281804) that fund Save Sight Now's USH1B research mission.

Quantifiable outcome

• Created 2 USH1B animal models (non-human primate and pig)
• +2 more outcomes

Named customers6 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Feature4 records

Partnerships

Eleven partnerships are on record, tiered core and strategic.

• Foundation Fighting BlindnesscoreStrategic or Co-development Partner · 1 January 2018Initial fiscal sponsor for 6 years. Collaborated to fund research and understand USH1B research landscape. Now maintaining collaboration on select initiatives while Save Sight Now operates as independent nonprofit.
• OHSU (Oregon Health & Science University)coreStrategic or Co-development PartnerDr. Martha Neuringer's lab created first genetically edited non-human primate model of USH1B. Dr. Kathleen Chirco created USH1B cell line.
• University of Wisconsin-MadisoncoreStrategic or Co-development PartnerDavid Gamm's lab developing USH1B potency assays. Research focuses on understanding MYO7A protein location and interactions in human retinal organoid-derived photoreceptors.
• Medical College of WisconsincoreStrategic or Co-development PartnerBrian A. Link's lab investigating MYO7A functions and protein interactions using pioneering zebrafish model that mirrors retinal degeneration seen in USH1B patients.
• Institut de la VisioncoreStrategic or Co-development PartnerDr. Isabelle Audo leads Light4Deaf natural history study with 44 USH1B patients enrolled. Part of international research collaboration.
• Odylia TherapeuticsstrategicStrategic or Co-development PartnerPartnered with Odylia and their nonprofit scientific advisory team for research strategy support. Ashley Winslow, PhD, CEO & CSO serves as advisor.
• USH1F CollaborativestrategicStrategic or Co-development PartnerCollaborating to explore potential gene-agnostic therapies that could benefit multiple Usher syndrome subtypes.
• The Fairfield FundcoreStrategic or Co-development PartnerUSH1B parent-led organization. Partnered to align strategy and focus collective resources. Hosted fundraiser at ARVO raising $60,000 for USH1B research.
• Save Sight Now EuropestrategicStrategic or Co-development PartnerParent-led USH1B organization. Collaborating on strategy alignment and resource focus across international USH1B advocacy groups.
• Silent Sight FoundationstrategicStrategic or Co-development PartnerParent-led USH1B organization. Partnered with three other USH1B parent organizations to discuss strategy alignment and collective resource focus.
• Dr. Uwe WolfrumcoreStrategic or Co-development PartnerDeveloping and characterizing USH1B pig model and cohort - a powerful tool for future therapeutic research and treatment testing.

Scale indicators6 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• CureUsher: European nonprofit funding gene therapy research across Usher syndrome types. Directly comparable in targeting Usher syndrome therapeutics and patient-driven funding model.
• Silent Sight Foundation: Parent-led USH1B advocacy organization partnering with Save Sight Now to align strategy and pool resources. Nearly identical mission, donor base, and operating model — direct organizational peer.
• The Fairfield Fund: Parent-led USH1B organization. Co-hosted an ARVO fundraiser with Save Sight Now that raised $60,000. Direct peer in disease focus, founding motivation, and grassroots fundraising approach.
• Usher Syndrome Society: Patient-advocacy nonprofit serving all Usher syndrome types. Highly comparable model combining awareness, family support, and research funding, but broader in scope (USH 1, 2, 3) than Save Sight Now's USH1B-only focus.
• USH1F Collaborative: Parent-led nonprofit focused on USH1F (a sibling Usher subtype). Direct peer in mission structure, parent-driven fundraising model, and ultra-rare disease focus; collaborates with Save Sight Now on potential gene-agnostic therapies.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest US rare disease umbrella nonprofit. Provides research grants, advocacy, and patient support across thousands of conditions including Usher syndrome. Useful peer for benchmarking organizational structure and donor engagement at scale.
• Odylia Therapeutics: Nonprofit biotech developing gene therapies for Usher syndrome and other rare inherited retinal diseases. Direct strategic partner of Save Sight Now; Ashley Winslow serves as advisor. Comparable in mission to translate USH research into treatments, but operates a therapeutic development pipeline rather than a grantmaking model.
• Foundation Fighting Blindness: Long-standing retinal disease research nonprofit and Save Sight Now's former fiscal sponsor. Funds inherited retinal disease research at materially greater scale, including the UNIRARE natural history study Save Sight Now co-supports. Directly comparable mission with much broader scope.

Others

• EveryLife Foundation for Rare Diseases: Public policy advocacy nonprofit for the rare disease community. Adjacent rather than directly competing; comparable in nonprofit operating model and donor-driven mission to accelerate rare disease therapeutic development.

Regional players

• Save Sight Now Europe: Sister USH1B parent-led organization operating in Europe. Exact same disease focus and parent-led model, but geographically distinct. Collaborates with Save Sight Now on international strategy alignment.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/savesightnow

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Save Sight Now