What Jack McGovern Coats' Disease Foundation does

The Jack McGovern Coats' Disease Foundation is a 501(c)(3) non-profit charitable organization founded in 2006 by the parents of Jack McGovern, headquartered at 20 Park Road, Suite E, Burlingame, California, with a seven-person staff. The foundation's mission is to fund research, raise awareness, expand patient resources, and offer hope to patients affected by Coats' Disease, a rare eye condition causing abnormal retinal blood vessel development that can lead to vision loss or blindness. It serves two primary segments: Coats' Disease patients and families, and medical professionals (ophthreats and retinal specialists) who treat them. Its core 'products' are patient-facing services — a global Doctor Directory spanning 20+ countries, a Patient Registry, educational resources including FAQs and treatment guides, a video library, and patient stories — plus research grants and a Scientific Advisory Board chaired by Dr. Mary Elizabeth Hartnett, with five additional members, governing research direction.

The foundation operates a donations-driven revenue model with seven structured giving tiers ranging from $20 (Hope Giver) to $5,000+ (Visionary Circle), supplemented by monthly Hope Sustainer recurring donations. Its go-to-market mix is community-led: a website (coatsdiseasefoundation.org), email newsletter, Instagram, press outreach, and annual fundraising events including golf tournaments, Topgolf events, an Evening of Gratitude and Vision gala, and virtual 5K runs. Revenue figures are not publicly disclosed. The foundation supplements its donor base with institutional credibility infrastructure — NORD membership, California Nonprofit Association membership, and a GuideStar/Candid Platinum Seal of Transparency — and has secured state proclamations declaring August 17 as Coats' Disease Awareness Day in 10+ U.S. states. The 20th Anniversary in 2026 is being marked with a dedicated Giving Circle campaign.

Name

Jack McGovern Coats' Disease Foundation

Legal name

Jack McGovern Coats' Disease Foundation

Website

https://coatsdiseasefoundation.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

The Jack McGovern Coats' Disease Foundation is a 501(c)(3) non-profit founded in 2006 that funds research, raises awareness, and provides patient resources including a global doctor directory and patient registry for people affected by Coats' Disease, a rare retinal condition.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212)

akta.pro primary industry

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

Keywords

• Rare disease advocacy
• Patient support services
• Medical research funding
• Ophthalmology resources
• Charitable foundation

Headquarters

HQ city

Burlingame, California

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Donations and Charitable Contributions: The foundation generates revenue through donations from individuals, families, and supporters at various giving levels including Visionary Circle ($5,000+), Beacon of Hope ($2,500-$4,999), Champion of Sight ($1,000-$2,499), Guardian of Hope ($500-$999), Friend of the Foundation ($200-$499), Hope Giver ($20-$199), and monthly Hope Sustainer donors.

Distribution channels3 records

Marketing channels5 records

Core offering

The Jack McGovern Coats' Disease Foundation is a 501(c)(3) nonprofit charitable organization that funds medical research, raises awareness, and provides patient resources for individuals and families affected by Coats' Disease, a rare retinal condition. Its offerings include a global Doctor Directory of retinal specialists, a Patient Registry, educational patient resources and FAQs, research grants, and peer community support through patient stories and fundraising events.

Product overview

Jack McGovern Coats' Disease Foundation is a 501(c)(3) non-profit charitable organization established in 2006, focused on raising funds for research, raising awareness, expanding patient resources, and providing hope for Coats' Disease patients. The foundation operates a suite of programs including a Doctor Directory connecting patients with retinal specialists worldwide, a Patient Registry for community connection, Patient Resources including educational materials and FAQs, Research & Publications for scientific advancement, Community Events for fundraising and awareness, and Patient Stories for peer support. The foundation is not a technology company but rather a patient advocacy and research funding organization.

Differentiator

Problem solved

Functional benefit

Products and services

• Doctor Directory A searchable directory connecting Coats' Disease patients and families with knowledgeable retinal specialists worldwide, organized by geographic region.
• Patient Registry A registration program enabling Coats' Disease patients to enroll and connect with the foundation's community network, support resources, and research participation opportunities.
• Patient Resources and Educational Materials Educational materials including FAQs, treatment options, questions to ask doctors, video library, and resources for recently diagnosed Coats' Disease patients.
• Research Grants and Publications Foundation-funded research initiatives, grants for medical professionals, and access to Coats' Disease articles and scientific publications.

Named customers1 record

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Three partnerships are on record, tiered core and regional.

• National Organization for Rare Disorders (NORD)coreOthersNORD membership provides the foundation with access to rare disease advocacy resources, networking with other patient organizations, and collective advocacy for rare disease awareness and policy.
• California Nonprofit AssociationregionalOthersState-level nonprofit membership association providing compliance resources, networking, and support for California-based charitable organizations.
• GuideStar/CandidcoreOthersPlatinum Seal of Transparency indicates the foundation meets Candid's highest standards for nonprofit transparency and accountability.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• American Macular Degeneration Foundation: Nonprofit dedicated exclusively to macular degeneration research and patient support; analogous model of disease-specific research funding plus patient education and doctor referrals.
• Foundation Fighting Blindness: Leading US nonprofit funding research for retinal degenerative diseases; directly comparable as a disease-specific retinal foundation that raises donations, funds research grants, and connects patients to specialists.
• Retina International: Global umbrella of patient organizations for inherited retinal diseases; comparable as an international retinal-disease advocacy network supporting research and patient communities across regions.
• Glaucoma Research Foundation: Eye-disease-specific 501(c)(3) that funds research, raises awareness, and provides patient resources for glaucoma; operates a near-identical donation-funded research-grant model.
• International Retinal Research Foundation: Nonprofit that funds laboratory and clinical research into retinal diseases; highly comparable donation-funded, disease-specific research-grantmaking model.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the ~7,000 rare diseases; this foundation is an existing NORD member, and NORD provides comparable rare-disease patient resources, research funding, and policy advocacy.
• American Academy of Ophthalmology Foundation: Philanthropic arm of the US ophthalmology professional society; comparable in supporting ophthalmic education, research, and public awareness, but embedded within a much larger professional organization.
• Research to Prevent Blindness: Major US funder of ophthalmic and vision research at academic institutions; overlaps with the foundation's research-grant mission and Scientific Advisory Board model.
• Prevent Blindness: Established eye-health nonprofit focused on vision loss prevention through screening, advocacy, and education; comparable mission overlap on patient resources and awareness, broader in scope than a single rare disease.

Emerging players

• Lighthouse Guild: Nonprofit providing services and research for people with vision loss; adjacent patient-resource and vision-rehabilitation focus, with comparable donor-funded programs.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Instagraminstagram.com/p/CvFSwVPIhFV
• LinkedInlinkedin.com/company/jack-mcgovern-coats-disease-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Jack McGovern Coats' Disease Foundation