Ush Society

What Ush Society does

The Usher Syndrome Society is a US 501(c)(3) nonprofit headquartered in Needham, Massachusetts, founded circa 2012 to raise public awareness and fund research for treatments and a cure across all types of Usher syndrome, the leading genetic cause of combined deafness and blindness. The organization serves individuals and families affected by Usher syndrome, with secondary reach to general public donors and supporters, and operates with a 1–10 person staff. Programmatic offerings center on personal storytelling: the 'Shine a Light on Usher Syndrome' photojournalism exhibit, the 'Every Second Counts' ambassador campaign with placements on Disney+ and Hulu, a Times Square digital takeover, docuseries and films, 'Sight, Sound & Strength' live events, an annual convention, and 'Conversations with USH' community engagement. Operations are complemented by a community blog, peer-to-peer personal fundraiser pages, and the Tactile Collection merchandise shop.

There is no proprietary core technology; the underlying stack is standard nonprofit infrastructure including WordPress/WooCommerce, Stripe for payments, Google Analytics, and Google Maps APIs. The business model is donation-funded, with revenue streams from individual donations (online, mail, stock, DAFs, employer matching), personal fundraisers, and merchandise, and with all funds partially allocated toward research grants vetted by an Expert Scientific Advisory Board. To date, the organization has committed over $3.5 million toward vision and hearing research in labs globally. Governance is independent with no parent company or equity investors; the entity is donor-funded with US Tax ID 26-1577154, and operates with GuideStar/Candid Transparency Seal accreditation and USH Partner recognition from the Usher Syndrome Coalition.

The go-to-market motion is community-led rather than transactional: storytelling content, events, and peer-to-peer fundraising form the primary donor acquisition channels, with the website, social media (Facebook, Instagram, LinkedIn, YouTube), and direct events as distribution channels. There are no paying customers in a commercial sense; 'customers' are segments of affected individuals, families, and general donors, with horizontal segmentation across use cases spanning awareness building, community support, personal storytelling, and research funding advocacy.

Name

Ush Society

Legal name

Usher Syndrome Society

Website

https://ushersyndromesociety.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

The Usher Syndrome Society is a 501(c)(3) nonprofit headquartered in Needham, Massachusetts that raises public awareness and funds global research for treatments and a cure across all types of Usher syndrome. It serves affected individuals, families, and general donors through storytelling campaigns, live events, peer-to-peer fundraisers, and research grants.

Ownership category

akta.pro rank

Product category

Rare Disease Nonprofit Advocacy

NAICS

Social Advocacy Organizations (8133), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Social Media & Community Management (PR-led) (BPAFADAM)

Keywords

• Rare disease advocacy
• Nonprofit research funding
• Usher syndrome awareness
• Community storytelling
• Peer-to-peer fundraising

Headquarters

HQ city

Needham

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, Technology or R&D, Others

Revenue model

1. Donations: The primary revenue stream comes from individual donations made online via credit card or bank transfer, by mail check, through stock or securities gifts, Donor Advised Funds (DAFs), and employer matching programs. Donations are tax-exempt as the organization is a registered 501(c)(3) nonprofit.
2. Personal Fundraisers: Community members create personal fundraising pages to raise funds on behalf of the organization, with donations directed to specific individuals' stories or general research funds.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

The Usher Syndrome Society is a 501(c)(3) nonprofit that raises public awareness of Usher syndrome — the leading genetic cause of combined deafness and blindness — through storytelling programs including photojournalism exhibits, documentary films, and live events. It funds cutting-edge vision and hearing research in laboratories worldwide under the guidance of an expert Scientific Advisory Board, having committed over $3.5 million to date toward treatments and a cure for all types of Usher syndrome.

Product overview

The Usher Syndrome Society is a non-profit 501(c)(3) organization dedicated to raising public awareness and research funding for every type of Usher syndrome. The organization operates as a unified mission-driven entity rather than a commercial product platform. Its core offerings consist of awareness and storytelling programs including the Shine a Light on Usher Syndrome exhibit, the Every Second Counts Campaign (featuring ambassador testimonies and commercials on Disney+ and Hulu), Sight, Sound & Strength Events, Docuseries & Films, and Conversations with USH. The organization also provides a Community Blog for personal stories, Personal Fundraiser pages for individual fundraising efforts, and a Tactile Collection merchandise shop. All offerings work together to advance the organization's mission of finding treatments and ultimately a cure for Usher syndrome.

Differentiator

Problem solved

Functional benefit

Products and services

• Shine a Light on Usher Syndrome Exhibit

Quantifiable outcome

• Over $3.5 million committed to Usher syndrome research globally

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Partnerships

One partnership is on record.

• Scientific Advisory BoardcoreOthersThe organization is guided by an expert Scientific Advisory Board that helps identify and support the most promising Usher syndrome research and collaborations in labs across the globe. The board provides strategic oversight for research grant funding decisions.

Scale indicators2 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is a US-based umbrella advocacy organization supporting patients with all rare diseases, including Usher syndrome. It is comparable as a peer advocacy/awareness nonprofit with research funding programs, policy advocacy, and patient registries, though it does not focus on any single condition.
• Prevent Blindness: Prevent Blindness is a US nonprofit focused on eye health advocacy, education, and research. It is comparable as a peer vision-focused awareness and research nonprofit engaging overlapping patient and donor audiences, though it addresses all causes of vision loss rather than a single condition.
• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is a large, well-resourced rare-disease nonprofit that funds research, drives patient advocacy, and has successfully translated philanthropic dollars into approved therapies. It is comparable as a benchmark for what a mature rare-disease research nonprofit can achieve, though it operates at vastly greater scale.
• American Foundation for the Blind: The American Foundation for the Blind addresses vision loss through advocacy, research support, and services. It is comparable as a US nonprofit addressing blindness — one of the two primary symptoms of Usher syndrome — and engages overlapping populations, though it is not disease-specific.
• National Association of the Deaf: The National Association of the Deaf is the leading US civil rights organization for deaf and hard-of-hearing individuals. It is comparable as a peer advocacy nonprofit serving a population significantly affected by Usher syndrome, though its scope is much broader than a single disease.
• Hearing Loss Association of America: Hearing Loss Association of America is a US consumer advocacy organization serving individuals with hearing loss, a core symptom of Usher syndrome. It is comparable as a peer awareness/support nonprofit with overlapping beneficiary populations, though its mission is broader than genetic deaf-blindness research.

Direct peers

• Charcot-Marie-Tooth Association: The Charcot-Marie-Tooth Association is a US-based rare disease nonprofit funding research for an inherited neurological condition. It is comparable as a peer single-disease research-funding nonprofit with similar structure (Scientific Advisory Board, donor-driven funding, community storytelling).
• Foundation Fighting Blindness: The Foundation Fighting Blindness funds research for inherited retinal diseases, including Usher syndrome-related vision loss. It is the most directly comparable peer — a US-based 501(c)(3) with a similar research-funding-plus-awareness mission, a Scientific Advisory Board, and an overlapping donor and researcher ecosystem, though it is substantially larger and covers a broader disease portfolio.
• Usher Syndrome Coalition: The Usher Syndrome Coalition is the only other major US organization explicitly dedicated to Usher syndrome, focusing on the patient registry, advocacy, and connections to research. It is the most direct peer, with substantial mission overlap; the Usher Syndrome Society has even been recognized with the Coalition's USH Partner designation.

Others

• Perkins School for the Blind: Perkins School for the Blind is a US-based nonprofit serving children and adults who are blind, including those with Usher syndrome. It is comparable as an adjacent service organization supporting the same beneficiary population, though its core function is direct education rather than research funding.

Market position

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@ushersyndromesociety
• Facebookfacebook.com/ushersyndromesociety
• LinkedInlinkedin.com/company/usher-syndrome-society
• Instagraminstagram.com/ushsociety

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Ush Society