Cure & Action for Tay-Sachs (CATS) Foundation

What Cure & Action for Tay-Sachs (CATS) Foundation does

The CATS Foundation is a UK-registered charitable organization (charity number 1200737, founded 2011) dedicated to supporting families affected by Tay-Sachs and Sandhoff diseases, which are rare lysosomal storage disorders within the GM2 gangliosidosis family. Headquartered in Altrincham, England, the foundation operates with a small team of approximately 5-6 people and serves as the primary patient advocacy and family support organization for these conditions in the UK and broader European region. Its primary constituents are families impacted by Tay-Sachs and Sandhoff, with a secondary audience of healthcare professionals and clinicians involved in diagnosing and managing these conditions.

The foundation's service portfolio includes direct family support (diagnosis packs, respite weekends, and ongoing counseling), annual European family conferences, educational resources (a clinical toolkit, a children's book, webinars, and the "Rare Revelations" podcast), and awareness campaigns such as the award-winning "Spot the Stop" initiative aimed at improving early diagnosis by healthcare professionals. It also maintains a patient/family registry for research purposes and actively disseminates information about ongoing clinical trials conducted by biopharma partners (Azafaros, IntraBio, Taysha Gene Therapies). The organization's technology footprint is limited to a WordPress-based website, a SurveyMonkey-based registry, and standard social media channels; there are no proprietary software platforms, AI/ML systems, or commercial products.

The foundation is funded entirely through donations, individual and corporate fundraising events (including marathons and athletic challenges), and grants channeled via platforms such as JustGiving. It has no commercial revenue streams, no pricing model, and no parent company, holding company, or institutional backers. Its strategic value lies in its position as a trusted community convener, a regulatory advocacy voice (including submissions to the FDA), and an information broker between affected families and clinical research activity.

Name

Cure & Action for Tay-Sachs (CATS) Foundation

Legal name

The CATS Foundation - Cure and Action for Tay-Sachs (CATS) Foundation

Website

https://cats-foundation.org

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

1–10 employees

Short description

The CATS Foundation is a UK-registered charity (founded 2011) that supports families affected by Tay-Sachs and Sandhoff diseases through direct family services, annual European conferences, awareness campaigns, and clinical research information, funded entirely by donations and fundraising.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient family support
• Genetic disease awareness
• Clinical trial information
• Charitable fundraising

Headquarters

HQ city

Altrincham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: Charity relies on donations from individuals, corporate sponsors, and fundraising events including marathons, athletic challenges, community events, and online giving platforms like JustGiving.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels6 records

Core offering

The CATS Foundation is a UK-registered charity that provides direct family support, raises awareness, and leads research for Tay-Sachs and Sandhoff disease (GM2 gangliosidosis). Its core deliverables include ongoing family support services, annual European family conferences, community respite weekends, clinical toolkits for healthcare professionals, awareness campaigns such as 'Spot the Stop', and educational resources including podcasts, webinars, and printed materials. The foundation also facilitates community participation in clinical trial awareness and regulatory advocacy with bodies such as the FDA.

Product overview

The CATS Foundation operates as a charitable organization offering a portfolio of support services and educational resources for families affected by GM2 gangliosidosis (Tay-Sachs and Sandhoff diseases). The foundation provides direct family support services, educational tools including a clinical toolkit for healthcare professionals, awareness campaigns such as Spot the Stop, content platforms like the Rare Revelations podcast, and printed materials including a children's book. The foundation also maintains a patient registry for data collection and organizes annual family conferences. The offerings function as a coordinated support ecosystem rather than a unified software product.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Support Services

Quantifiable outcome

• Bronze Award at PM Society Digital Awards 2024 for Spot the Stop campaign
• +2 more outcomes

Named customers3 records

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

Ten partnerships are on record, tiered minor and core.

• AzafarosminorStrategic or Co-development Partner · 16 July 2024Biopharmaceutical company conducting Phase 2 clinical trials with nizubaglustat in GM2 gangliosidosis. CATS Foundation shares research updates and community information about their trials.
• Taysha Gene TherapiesminorStrategic or Co-development Partner · 1 March 2021Gene therapy company conducting TSHA-101 clinical trial for GM2 gangliosidosis at Queen's University. CATS Foundation shares trial information with community.
• VervecoreGTM or Marketing PartnerMarketing agency that collaborated with CATS Foundation to develop the 'Spot the Stop' campaign aimed at raising awareness among healthcare professionals for early diagnosis of Tay-Sachs disease.
• Four HealthcoreGTM or Marketing PartnerHealth communications agency that partnered with CATS Foundation on the 'Spot the Stop' campaign development and delivery.
• PM SocietycoreGTM or Marketing PartnerProfessional society supporting the 'Creativity for Good' campaign program that facilitated the Spot the Stop campaign development and provided recognition platform through PM Society Digital Awards.
• National Tay-Sachs & Allied Diseases Association (NTSAD)coreStrategic or Co-development PartnerUS-based allied organization that organized the Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting for GM2, representing the voices of the Tay-Sachs and Sandhoff community globally to the FDA. CATS Foundation participated as community representative.
• ETSCC (European Tay-Sachs and Sandhoff Charity Consortium)coreStrategic or Co-development PartnerEuropean consortium of Tay-Sachs and Sandhoff charities working collaboratively on research and advocacy initiatives.
• UK LSD CollaborativeminorStrategic or Co-development PartnerUK-based collaborative of lysosomal storage disease organizations sharing resources and advocacy efforts.
• Medics4RareDiseasesminorStrategic or Co-development PartnerUK charity providing rare disease training for healthcare professionals. CATS Foundation participated in their red flags study published in Orphanet Journal of Rare Diseases.
• IntraBiominorStrategic or Co-development PartnerBiotechnology company conducting clinical trials with IB1001 (N-acetyl-L-leucine) for GM2 Gangliosidosis treatment. CATS Foundation provides community updates on trial progress.

Scale indicators5 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• ALS Association: Major US voluntary health organization providing family support, research funding, advocacy, and awareness campaigns for ALS. Highly comparable operating model and revenue mix (donations, fundraising events, biotech partnerships, FDA advocacy) to a scaled-up version of CATS.
• Muscular Dystrophy Association (MDA): Large US voluntary health organization supporting families affected by neuromuscular diseases. Same voluntary-health-organization operating model (family support, research funding, advocacy, awareness campaigns) but at much larger scale and broader disease scope.

Direct peers

• National Tay-Sachs & Allied Diseases Association (NTSAD): NTSAD is the US national patient advocacy organization for Tay-Sachs, Sandhoff and GM1. It is the most direct functional peer — family support, research funding, FDA engagement — and a confirmed partner through the EL-PFDD meeting.
• Metabolic Support UK: UK charity providing support, information, and advocacy for patients and families affected by inherited metabolic diseases, including Tay-Sachs and Sandhoff. Overlaps with CATS on family-support services and rare disease advocacy in the same geography.
• CLIMB (Children Living with Inherited Metabolic Diseases): UK-focused charity supporting children and families affected by inherited metabolic diseases. Comparable target population, comparable services (information, family support), comparable scale and funding model.
• European Tay-Sachs and Sandhoff Charity Consortium (ETSCC): ETSCC is the European consortium of Tay-Sachs and Sandhoff charities of which CATS is a member. It is a direct peer at the supranational level, aggregating the same disease-specific family support and research agenda across Europe.
• Cure SMA: US-based voluntary health organization for spinal muscular atrophy. Comparable mission (support, awareness, research), comparable revenue model (donations + pharma partnerships), and comparable trajectory of becoming the de facto voice of its community with regulators and drug developers.

Emerging players

• UK LSD Collaborative: UK collaborative of lysosomal storage disease patient organizations including CATS. Direct peer at the disease-category level and a resource-sharing partner for advocacy and research initiatives.
• Medics4RareDiseases: UK charity focused on rare disease education for healthcare professionals. Overlaps with CATS on the clinician-facing side of the mission (clinical toolkit, red flags training, Medics4RareDiseases red flags study) and is a confirmed CATS partner.

Regional players

• ArchAngel MLD Trust: UK-based rare-disease family support charity focused on metachromatic leukodystrophy. Comparable operating model (small team, family support + research advocacy) within a related lysosomal storage disease space.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights5 records

Customer concentration

• Xx.com/tay_sachs
• YouTubeyoutube.com/channel/UC9Gqr5xBM82lLIBEtoO9n0w
• Facebookfacebook.com/TheCATSFoundation
• LinkedInlinkedin.com/company/the-cure-&-action-for-tay-sachs-cats-foundation
• Instagraminstagram.com/catsfoundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Cure & Action for Tay-Sachs (CATS) Foundation