Usher Syndrome Warriors Foundation

What Usher Syndrome Warriors Foundation does

The Usher Syndrome Warriors Foundation is a rare-disease nonprofit founded in 2022 by Hanna Love, a mother of two children with Usher Syndrome. The organization is dedicated to raising public awareness of Usher Syndrome — a genetic condition causing progressive vision and hearing loss — and channeling donations toward research into the disease. Its operational scope is narrow: awareness content, donor engagement, and fundraising rather than direct medical service delivery or scientific research execution.

The foundation operates primarily through a public website at ushersyndromewarriors.com, which functions as the central hub for its mission messaging, educational content, and donor outreach. The Blue Ribbon campaign serves as its most visible community-facing initiative. There is no proprietary technology platform, no patient registry, no research-dataset infrastructure, and no policy or advocacy program beyond awareness — the foundation's deliverables are engagement and contributions rather than scientific or clinical outputs.

Its business model is donation-based, with PayPal integrated as the primary processing channel for contributions. The foundation has no disclosed enterprise sponsors, institutional grants, or recurring major-donor programs in the available evidence. It appears to operate as a small, founder-led advocacy organization with no published headcount, board composition, or financial disclosures, and no evidence of corporate partnerships, research collaborations, or paid programs.

Name

Usher Syndrome Warriors Foundation

Legal name

Usher Syndrome Warriors Foundation

Website

https://ushersyndromewarriors.com

Company type

Private

Founded year

2022

Operating status

Operating

Short description

The Usher Syndrome Warriors Foundation is a 2022-founded nonprofit that raises awareness and collects donations via PayPal to support research into Usher Syndrome, a rare genetic vision and hearing loss condition. It serves the Usher Syndrome patient and caregiver community through digital outreach and the Blue Ribbon campaign.

Ownership category

akta.pro rank

Product category

Rare Disease Advocacy and Research Funding

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (8132)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

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

Keywords

• Rare disease awareness
• Medical research fundraising
• Nonprofit charity services
• Usher syndrome advocacy
• Genetic condition support

GTM type

B2C

Offering type

Services

Cost components

Operations, Marketing or Sales, Personnel

Revenue model

1. Donations: The foundation collects monetary donations from individuals, families, and supporters through PayPal. These donations are used to support healthcare professionals' specific research needs and to find opportunities that better assist people with Usher Syndrome.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels4 records

Core offering

Usher Syndrome Warriors Foundation is a nonprofit charity that raises public awareness about Usher Syndrome — a genetic condition involving combined vision and hearing loss — and collects donations through its website and PayPal to fund research into treatments and a cure, and to assist affected individuals and families. The foundation also runs the "Hug the Blue Ribbon" awareness campaign and provides community resources for people living with the condition.

Product overview

Usher Syndrome Warriors Foundation is a nonprofit charitable organization that raises awareness of Usher Syndrome and collects donations to fund research into this genetic condition. The organization does not offer technology products; its services consist of community awareness campaigns, fundraising for medical research, and providing assistance and support to individuals and families affected by Usher Syndrome. The foundation was established in 2022 by Hanna Love, a mother of two children diagnosed with Usher Syndrome.

Differentiator

Problem solved

Functional benefit

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves4 records

Expansion highlights3 records

Regional players

• Deafblind UK: Deafblind UK is the leading charity for people with combined sight and hearing loss in the United Kingdom. It is a comparable regional peer offering support, advocacy, and information for the deafblind community, with significant overlap in mission and beneficiary profile.
• American Deafblind Community Hub (DB-Link): The national deafblind project funded by the US Department of Education serves children and youth who are deafblind, including those with Usher Syndrome. It is a comparable service-and-advocacy organization addressing the same population, primarily in the US educational and family-support ecosystem.

Direct peers

• Foundation Fighting Blindness: Foundation Fighting Blindness funds research for inherited retinal diseases including Usher Syndrome. It is a comparable mission-aligned nonprofit that channels donor funds into vision-loss research and provides a more established alternative for donors interested in Usher Syndrome-related science.
• Usher Syndrome Coalition: The Usher Syndrome Coalition is the leading national nonprofit dedicated exclusively to Usher Syndrome, providing information, research connections, and community support. It is the most direct comparable to Usher Syndrome Warriors Foundation, operating in the same narrow disease niche with similar awareness and research-funding objectives.
• Cure Usher Syndrome (CureUSH): Cure Usher Syndrome is a disease-specific nonprofit focused on funding research to find treatments and a cure for Usher Syndrome. It is a direct peer operating with a near-identical mission of research funding and community support for the same narrow patient population.

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is the umbrella advocacy organization for all rare diseases in the US, including Usher Syndrome. It is referenced directly on the Usher Syndrome Warriors Foundation website and serves as a broad incumbent that captures many of the same donors and policy advocates.
• American Foundation for the Blind: The American Foundation for the Blind is a large national nonprofit addressing vision loss and blindness. It is comparable as a broader-mission incumbent that overlaps with the vision-loss component of Usher Syndrome and competes for some of the same donor and advocacy attention.
• Hearing Loss Association of America: Hearing Loss Association of America is the leading consumer advocacy organization for people with hearing loss. It overlaps with Usher Syndrome Warriors Foundation on the hearing-loss side of the condition and serves as a broad incumbent for the dual-sensory-loss community.
• Helen Keller National Center: Helen Keller National Center serves individuals who are deafblind, including those with Usher Syndrome. It is a federally established broad incumbent providing direct services and advocacy for the same combined vision-and-hearing-loss population that Usher Syndrome Warriors Foundation aims to support.

Others

• Cystic Fibrosis Foundation: Cystic Fibrosis Foundation is a large, mature rare disease research and advocacy nonprofit. While it serves a different condition, it is a relevant adjacent peer as a model for how small rare-disease-focused charities can scale into major research funders through disciplined, programmatic grantmaking.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat2 records

Key risks5 records

Key highlights6 records

Customer concentration

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 Usher Syndrome Warriors Foundation