Foundation Fighting Blindness

What Foundation Fighting Blindness does

Foundation Fighting Blindness is a 501(c)(3) nonprofit organization founded in 1971 and headquartered in Columbia, Maryland, with a mission to drive research toward preventions, treatments, and cures for the full spectrum of inherited and age-related retinal degenerative diseases, including retinitis pigmentosa, age-related macular degeneration, Usher syndrome, Stargardt disease, and Leber congenital amaurosis. The organization funds a multi-modality research portfolio spanning genetics, gene therapy, stem-cell therapy, retinal cell transplantation, pharmaceutical therapies, and nutritional interventions, and has cumulatively raised $996 million since inception, supporting the identification of over 330 retinal disease genes, the launch of more than 50 clinical trials, and the research underpinning Luxturna—the first FDA-approved gene therapy for any inherited disease. Its operational infrastructure includes the My Retina Tracker Registry and no-cost genetic testing program (delivered through PreventionGenetics and InformedDNA), the RD Fund venture arm for therapeutic commercialization, the Clinical Trial Pipeline resource, a Clinical Consortium of retinal specialists, and a Scientific Advisory Board.

The Foundation operates a hybrid community- and event-driven engagement model anchored by 40+ volunteer-led US chapters, the VisionWalk 5K fundraising program in 40+ cities (which has engaged 235,000+ walkers and raised over $71M since 2006), the biennial United in Vision conference (merged in 2026 with the Retina International World Congress), annual Night for Sight galas in New York, Chicago, and San Francisco, and a professional outreach program that targets ophthalmologists, optometrists, and retinal specialists through webinars and continuing education. Revenue is sourced from individual donations (one-time and monthly), corporate partnerships and sponsorships (including Amgen, Astellas, BlueRock Therapeutics, Genentech, and Regeneron), planned/legacy giving, and anchor gifts from disease-affiliated nonprofits such as Two Blind Brothers and A Race Against Blindness. Approximately 80% of the annual budget is reinvested into research grants and public health education, with FY2025 disbursement exceeding $9 million across 113 grants at 90 institutions and international research funding extending to laboratories in 17 countries.

Name

Foundation Fighting Blindness

Legal name

Foundation Fighting Blindness, Inc.

Website

https://fightingblindness.org

Company type

Private

Founded year

1971

Operating status

Operating

Headcount range

101–250 employees

Short description

Foundation Fighting Blindness is a 501(c)(3) nonprofit founded in 1971 that funds research, patient registries, and no-cost genetic testing for inherited retinal degenerative diseases, serving patients, families, eye care professionals, and 124 investigators across 90 institutions and 17 countries.

Ownership category

akta.pro rank

Product category

Nonprofit Retinal Disease Research

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

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

Keywords

• Retinal disease research
• Genetic testing programs
• Patient registry services
• Clinical trial funding
• Vision loss support

Headquarters

HQ city

Columbia

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: The foundation relies heavily on individual donations from patients, families, supporters, and the general public. Donors can give one-time or monthly gifts through the website, with various giving options including tribute donations, stock donations, and cryptocurrency.
2. Corporate Partnerships: Industry partners including pharmaceutical and biotech companies provide financial support through gold and silver sponsorship tiers for events and general operational funding.
3. VisionWalk Fundraising Events: The foundation's flagship fundraising program holds 5k walking events in over 40 cities nationwide, with walkers, donors, and corporate sponsors raising funds.
4. Gala Events: Annual Night for Sight galas in major cities (New York, Chicago, San Francisco) feature networking, dinner, and fundraising activities to raise funds for treatments and cures.
5. Legacy Giving: Planned giving through estate planning, IRA charitable rollovers, and legacy society programs for long-term donor engagement.

Pricing tiers

Go-to-market motion3 records

Distribution channels5 records

Marketing channels8 records

Core offering

Foundation Fighting Blindness is a 501(c)(3) nonprofit that funds research toward preventions, treatments, and cures for blinding retinal diseases including retinitis pigmentosa, age-related macular degeneration, Usher syndrome, Stargardt disease, and Leber congenital amaurosis. It operates a patient registry, no-cost genetic testing program, clinical trial pipeline resource, research grant program, venture investment arm (RD Fund), community chapter network, and educational conferences.

Product overview

The Foundation Fighting Blindness is a nonprofit organization (501(c)(3)) dedicated to driving research for preventions, treatments, and cures for blinding retinal diseases including retinitis pigmentosa, age-related macular degeneration, Usher syndrome, Stargardt disease, and Leber congenital amaurosis. The organization's offerings span research funding infrastructure, patient registry and genetic testing services, clinical trial matching, education and advocacy, and community support. Core offerings include the My Retina Tracker Program (patient registry and genetic testing program), the RD Fund (venture arm for therapeutic development), Clinical Trial Pipeline (trial matching), VisionWalk (flagship fundraising events), Foundation Chapters (community network), VISIONS Conference (biennial research conference), Mental Health Resource Center (emotional support), Low Vision Resources (rehabilitation services), and the Eye Donor Program (research tissue access). The Foundation funds over 113 research grants annually across 124 investigators at 90 institutions globally.

Differentiator

Problem solved

Functional benefit

Brands

• VisionWalk: The Foundation's flagship fundraising program featuring walks in over 40 cities nationwide. Since its inception, over 235,000 walkers, donors, and corporate sponsors have raised more than $71 million.
• RD Fund
• My Retina Tracker Program
• Night for Sight Gala

Products and services

• My Retina Tracker Program A research database and patient registry for people and families affected by rare inherited retinal degenerative diseases, enabling patients to upload information about their condition to get on the radar of researchers and therapy developers worldwide, including those recruiting for clinical trials.
• My Retina Tracker Genetic Testing Program A no-cost genetic testing program enabling eye care professionals in the US to order genetic testing for patients clinically diagnosed with an inherited retinal disease, with genetic counseling provided through InformedDNA.
• VisionWalk The Foundation's flagship fundraising event program consisting of 5K walks held in over 40 cities nationwide to raise funds for retinal disease research.
• RD Fund (Retinal Degeneration Fund) The venture arm of the Foundation Fighting Blindness focused on advancing groundbreaking therapeutics for retinal diseases while generating financial returns to further the Foundation's mission.
• VISIONS Conference (United in Vision) The Foundation's biennial conference showcasing cutting-edge retinal research, assistive technology, and community advocacy, merged with Retina International World Congress in 2026 as United in Vision.
• Foundation Chapters Network A network of 40+ volunteer-led chapters across the U.S. that raise funds, increase public awareness, and provide community support for people affected by blinding diseases.
• Clinical Trial Pipeline A comprehensive resource listing over 40 ongoing clinical trials for emerging retinal disease treatments, providing patients and professionals with information on trial locations, eligibility, and enrollment.

Quantifiable outcome

• First FDA-approved gene therapy for any inherited disease (Luxturna)
• +3 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Feature2 records

Partnerships

Six partnerships are on record, tiered core and minor.

• Retina InternationalcoreStrategic or Co-development Partner · 20 April 2026Co-hosting the United in Vision 2026 conference merging Foundation's biennial VISIONS conference with Retina International World Congress, expecting 1,000+ global attendees across 27 sessions.
• PreventionGeneticscoreTechnology or IntegrationProvides state-of-the-art genetic testing panel for inherited retinal diseases through the My Retina Tracker Genetic Testing Program, enabling no-cost testing for patients.
• InformedDNAcoreTechnology or IntegrationProvides genetic counseling services for patients through the My Retina Tracker Genetic Testing Program, helping patients understand test results and implications for families.
• RD Fund (Retinal Degeneration Fund)coreStrategic or Co-development PartnerFoundation's venture arm with dual mission: advancing groundbreaking therapeutics for patient-centric global social impact while generating financial returns to further the Foundation's mission.
• Future Leaders in Sight (FLIS)minorStrategic or Co-development PartnerStudent-led national organization focused on raising awareness of legislation affecting vision care, connecting medical students with ophthalmology leaders, and supporting patient-beneficial legislation.
• Foundation Fighting Blindness Clinical ConsortiumcoreStrategic or Co-development PartnerNot-for-profit alliance of retinal disease specialists and geneticists committed to accelerating development of efficacious treatments for inherited retinal diseases through clinical research and collaboration.

Scale indicators10 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): Umbrella rare-disease nonprofit of which FFB is a Platinum Member; comparable grantmaking, patient registry, and policy advocacy infrastructure across many rare conditions including inherited retinal diseases.
• Prevent Blindness: Eye-health nonprofit focused on vision impairment prevention and screening, public education, and advocacy — directly comparable mission focus on sight preservation and a similar chapter-based and donor-supported operating model.
• Retina International: Global umbrella of national retinal disease patient organizations; FFB co-hosts the United in Vision 2026 conference with Retina International — directly comparable mission with international scope.
• Muscular Dystrophy Association (MDA): Voluntary health organization funding neuromuscular disease research, running patient registries and clinical care centers, and hosting large-scale fundraising (gala/peer-to-peer events) — closely mirrors FFB's structure for inherited retinal diseases.
• BrightFocus Foundation: Nonprofit funding research on macular degeneration, glaucoma, and Alzheimer's — directly overlaps FFB's AMD and inherited retinal disease research portfolio, with similar grant programs and patient education resources.
• Foundation Fighting Blindness Canada: Canadian sister organization of FFB with the same mission, disease focus, and research funding model — most directly comparable mission and programmatic scope, but operating primarily in Canada rather than the US.
• Cystic Fibrosis Foundation: Disease-specific nonprofit that funds basic, translational, and clinical research for cystic fibrosis and operates a venture philanthropy model (e.g., venture investments that returned >$3B from Vertex royalties) — directly comparable to FFB's RD Fund approach for retinal disease.
• Research to Prevent Blindness (RPB): Foundation that provides unrestricted research grants to ophthalmology departments at US medical schools — directly comparable as an eye-research grantmaking foundation supporting investigators at US institutions.

Broad incumbents

• American Cancer Society: Much larger voluntary health organization funding cancer research, patient support, and prevention — a relevant structural benchmark for FFB's donation-funded, chapter-driven, registry-enabled model in a different disease vertical.
• Foundation for the National Institutes of Health (FNIH): Nonprofit that manages public-private partnerships and raises private funds to support NIH research — analogous in bridging private philanthropy and biomedical R&D infrastructure, but at a much broader scale across many disease areas.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/fightblindness
• YouTubeyoutube.com/FndFightingBlindness
• Facebookfacebook.com/foundationfightingblindness
• LinkedInlinkedin.com/company/foundation-fighting-blindness
• Instagraminstagram.com/fightblindness
• TikToktiktok.com/@fightblindness

Compliance6 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Subsidiaries1 record

Funding overview

Funding rounds2 records

Investors1 record

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M&A

Investments9 records

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Frequently asked questions about Foundation Fighting Blindness