Cure Tay-Sachs Foundation

What Cure Tay-Sachs Foundation does

Cure Tay-Sachs Foundation (CTSF) is a 501(c)(3) non-profit organization founded in 2007 and headquartered in Phoenix, Arizona. Its sole mission is to fund scientific research aimed at developing treatments and a cure for Tay-Sachs disease, a fatal inherited neurological disorder caused by mutations in the Hex-A gene. Since inception, CTSF reports raising over $7.6 million from "thousands of generous donors" and deploying those funds across 25 research grants to laboratories worldwide, spanning gene therapy, enzyme replacement therapy, stem cell treatment, and chaperone therapy approaches. The foundation explicitly anticipates a strategic pivot: once a cure is achieved, it will redirect resources toward carrier-testing promotion and broader Tay-Sachs awareness initiatives.

CTSF operates without proprietary technology products. Its core offerings are (i) research grant-making, (ii) educational resources including a "User-Friendly Guide" that translates complex research concepts for affected families, (iii) family support and clinical-trial navigation, and (iv) a donation and fundraising platform. Its technology stack is conventional non-profit infrastructure: a WordPress-based website, Constant Contact for email, Facebook/LinkedIn/Instagram for community engagement, and Facebook Fundraisers plus Double the Donation for donor acquisition and employer matching. The organization is led by Rick Karl (sole named contact) with a 1-10 person staff.

The business model is donation-funded and community-driven. CTSF does not sell products or services; it solicits tax-deductible charitable contributions through its website, peer-to-peer campaigns, grassroots events such as walkathons, and Facebook Fundraiser integrations. Its primary "customers" are two-sided: affected families and at-risk populations (particularly individuals of Ashkenazi Jewish, French Canadian, Louisiana Cajun, and Irish-American descent, where carrier rates range from 1 in 27 to 1 in 50 versus 1 in 250 in the general population) on one side, and donors seeking rare-disease research impact on the other. CTSF coordinates with peer organizations including the National Tay-Sachs & Allied Diseases Association (NTSAD) and the European Cure & Action for Tay-Sachs (CATS) Foundation, but does not merge or share back-office infrastructure with them.

Name

Cure Tay-Sachs Foundation

Legal name

Cure Tay-Sachs Foundation

Website

https://curetay-sachs.org

Company type

Private

Founded year

2007

Operating status

Operating

Headcount range

1–10 employees

Short description

Cure Tay-Sachs Foundation is a 501(c)(3) non-profit that funds scientific research toward treatments and a cure for Tay-Sachs disease. Founded in 2007 and based in Phoenix, Arizona, it serves affected families, at-risk carriers, and donors through community-driven fundraising.

Ownership category

akta.pro rank

Product category

Rare Disease Nonprofit Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Health Services (8000)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industry

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

Keywords

• Rare disease research funding
• Charitable foundation services
• Genetic disease advocacy
• Disease awareness education
• Nonprofit fundraising platform

Headquarters

HQ city

Phoenix

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The foundation raises funds through individual donations, Facebook fundraisers, community events, peer-to-peer campaigns, and corporate matching programs. Since its establishment in 2007, CTSF has successfully raised over $7.6 million funding 25 global research efforts. Donations are tax-deductible under 501(c)(3) status.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels7 records

Core offering

The Cure Tay-Sachs Foundation (CTSF) is a 501(c)(3) nonprofit organization that raises and disburses funds for scientific research aimed at developing treatments and a cure for Tay-Sachs disease. Since its founding in 2007 in Phoenix, Arizona, the foundation has raised more than $7.6 million and funded 25 global research grants. It also educates affected families about Tay-Sachs disease and connects them with genetic testing resources, clinical trial information, and supportive services.

Product overview

The Cure Tay-Sachs Foundation is a non-profit 501(c)(3) organization that operates as a research funding and advocacy platform rather than a technology product company. The foundation's core offerings include funding scientific research for Tay-Sachs disease treatments, providing educational resources through its User-Friendly Guide and informational pages about the disease, offering family support resources, and facilitating donations via its fundraising platform. The organization connects patients, families, and researchers through its website, which serves as the central hub for awareness, education, and contributions toward finding a cure.

Differentiator

Problem solved

Functional benefit

Products and services

• Charitable Donation Program Tax-deductible donation program that lets individual donors and organizations contribute funds toward Tay-Sachs disease research through the foundation website, with suggested donation tiers and employer matching gift options.
• Tay-Sachs Disease Research Grant Program Competitive grant program that awards funding to scientific researchers worldwide investigating treatments and a cure for Tay-Sachs disease. The foundation has funded 25 global research grants since 2007.
• Facebook Fundraiser Integration Charitable giving channel that allows supporters to create and run Facebook-based fundraisers benefiting the foundation, expanding the donor base through social media.

Quantifiable outcome

• Over $7.6 million raised since 2007, funding 25 global research efforts
• +1 more outcomes

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core and minor.

• National Tay-Sachs & Allied Diseases Association (NTSAD)coreStrategic or Co-development PartnerNTSAD is referenced as a key resource for certified carrier screening locations. The foundation directs families to NTSAD for listing of certified testing facilities. NTSAD maintains a database of screening locations which is important for high-risk populations seeking testing.
• Cure & Action for Tay-Sachs (CATS) FoundationminorStrategic or Co-development PartnerEuropean-based organization that empowers families with tools and support to make informed decisions and cope with Tay-Sachs challenges. Listed as a resource alongside Cure Tay-Sachs Foundation for families seeking support.

Scale indicators4 records

Recent moves5 records

Expansion highlights4 records

Emerging players

• Global Genes: A rare-disease patient advocacy organization focused on education, building patient communities, and supporting under-resourced disease foundations. Comparable mission to support and connect rare-disease families and accelerate research.
• CHMP FDA Pediatric Rare Disease Grant Recipients (Sanfilippo, Niemann-Pick foundations): Peer rare lysosomal storage disease foundations (e.g., Cure Sanfilippo Foundation, National Niemann-Pick Disease Foundation) share the small-foundation model for funding pediatric neurodegenerative disease research and educating families about a single rare genetic condition.

Direct peers

• National Tay-Sachs & Allied Diseases Association (NTSAD): NTSAD is the leading US patient advocacy organization for Tay-Sachs and allied diseases, providing carrier screening resources, family support, and research funding. It is the most directly comparable peer given the same disease focus and overlapping mission to fund research and support families.
• Cure & Action for Tay-Sachs (CATS) Foundation: CATS is the European counterpart organization empowering families affected by Tay-Sachs; listed by CTSF as a peer resource. Same disease focus with comparable education, support, and research-funding offerings.

Broad incumbents

• Cystic Fibrosis Foundation: A large, disease-specific 501(c)(3) that funds research, runs a therapeutics lab, and supports patients with a single rare genetic disease. Comparable operating model (research funding + family resources + advocacy) at far greater scale.
• Muscular Dystrophy Association (MDA): A large nonprofit funding neuromuscular disease research and providing family clinical/support services. Comparable model of funding academic and translational research coupled with community-based fundraising and patient services.
• ALS Association: A major disease-specific nonprofit that funds research, advocates, and supports patients/families affected by ALS. Comparable mission structure (disease-specific research funding + family services) with a much larger donor base and fundraising footprint.
• EveryLife Foundation for Rare Diseases: A rare-disease policy and advocacy nonprofit that drives federal funding, newborn screening, and patient access programs. Comparable as a rare-disease-focused nonprofit using donations to fund research-adjacent initiatives.
• Alzheimer's Association: The largest US nonprofit funding dementia research and providing patient/family support. Late-Onset Tay-Sachs shares neurodegenerative mechanisms with Alzheimer's, and the model of disease-specific research funding plus patient services is directly comparable.
• National Organization for Rare Disorders (NORD): The umbrella advocacy organization for rare diseases in the US, providing research grants, policy advocacy, and patient assistance programs. Overlaps with CTSF on rare-disease research funding and patient community support.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xinstagram.com/curetaysachs_foundation
• Facebookfacebook.com/CTSF1
• LinkedInlinkedin.com/company/cure-tay-sachs-foundation
• Instagraminstagram.com/curetaysachs_foundation

Compliance1 record

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 Cure Tay-Sachs Foundation