Progressive Supranuclear Palsy Association

What Progressive Supranuclear Palsy Association does

Progressive Supranuclear Palsy Association (PSPA) is a UK-registered charity founded in 1994 (or 1995 per company history records) and headquartered in Milton Keynes. It is the only UK charity dedicated to Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), serving an estimated 10,000 people living with these conditions in the UK. The organization operates as a registered charity in England and Wales (no. 1037087) and in Scotland (no. SC041199), with no parent company, no subsidiaries, and trustee-based governance.

PSPA's core offerings are organized around four pillars: direct support services (a national helpline at 0300 0110 122, 81 volunteer-led local support groups across the UK, Befriending and Link Volunteer Services, a Carers Wellbeing Hub, and a Healthcare Professionals Hub); educational content (the 'Personal Guide to PSP & CBD', the PSPA Matters quarterly magazine, and a podcast on Spotify); research funding (the £2 million Understood Appeal funding biomarkers research, national care standards, and small pilot grants, alongside the PROSPECT research network and Brain Donation Program); and fundraising infrastructure (event participation in marathons, treks, skydives, and cycles, e-Cards, merchandise shop, and corporate partnerships). The charity is integrated with JustGiving for donations and HealthUnlocked for community forums. Technology stack is standard non-profit infrastructure (WordPress website, calendar feeds for Google/iCalendar/Outlook), with no proprietary AI or platform technology.

PSPA is funded entirely through voluntary donations — one-off and regular donations, in-memory giving, event fundraising, corporate partnerships, trust and foundation grants, and legacy gifts. The 2022 Elizabeth Fiddler legacy catalyzed the Understood Appeal. Headcount sits at 11-50 employees, with revenue not publicly disclosed but triangulated to the low single-digit millions GBP range. The organization is not commercially traded and operates as a non-profit with no shareholders.

Name

Progressive Supranuclear Palsy Association

Legal name

Progressive Supranuclear Palsy Association

Website

https://pspassociation.org.uk

Company type

Private

Founded year

1995

Operating status

Operating

Headcount range

11–50 employees

Short description

PSPA is the sole UK charity dedicated to Progressive Supranuclear Palsy and Corticobasal Degeneration, providing support services, research funding, and information to an estimated 10,000 UK patients, their carers, and healthcare professionals through a national helpline, 81 support groups, and the £2M Understood Appeal.

Ownership category

akta.pro rank

Product category

Charitable Patient Support Services

NAICS

Services for the Elderly and Persons with Disabilities (62412), Services for the Elderly and Persons with Disabilities (624120), Other Individual and Family Services (624190), Other Individual and Family Services (62419), Voluntary Health Organizations (813212), Social Advocacy Organizations (8133)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Rare disease charity
• Patient support services
• Neurological research funding
• Community support groups
• Caregiver wellbeing services

Headquarters

HQ city

Milton Keynes

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, Technology or R&D, Infrastructure

Revenue model

1. Donations and Fundraising: PSPA is entirely reliant on voluntary donations. Revenue streams include one-off donations, regular donations, in-memory donations, event participation fundraising, corporate partnerships, trust and foundation grants, and legacy gifts left in wills.

Go-to-market motion2 records

Distribution channels5 records

Marketing channels6 records

Core offering

PSPA is the only UK charity dedicated to Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). It delivers information, direct support services (helpline, 81 local support groups, befriending and link volunteer services), publications, and funds research through programmes such as the £2 million Understood Appeal. All services are provided free of charge and funded entirely through voluntary donations.

Product overview

PSPA operates as a single-platform charity organization providing an integrated suite of support services for people affected by Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). The core offering consists of direct support services (Helpline, Support Groups, Link Volunteer Service, Befriending Service, Carers Wellbeing Hub) complemented by educational resources (Personal Guide, Healthcare Professionals Hub), a quarterly magazine (PSPA Matters), and research funding programs (Understood Fund). The organization also runs fundraising operations including an e-commerce shop, PSPA Pathway to Progress challenge, and the £2 million Understood Appeal for research. An online community forum on HealthUnlocked and calendar integration for events complete the service portfolio.

Differentiator

Problem solved

Functional benefit

Products and services

• PSPA Helpline Service Telephone (0300 0110 122) and email ([email protected]) support service providing information, advice and emotional support for people living with PSP & CBD, their carers, families, and healthcare professionals.
• PSPA Local Support Groups A network of 81 volunteer-led local support groups across the UK (including Devon & Cornwall, Bradford, Kenilworth, Norwich, London, Scotland, Northern Ireland and others) providing in-person peer support, mutual assistance and information sharing for people with PSP & CBD, families and carers.
• PSPA Matters Magazine Quarterly publication produced by PSPA and distributed by post and email, featuring care guidance, research updates, fundraising stories, and community content for people affected by PSP & CBD.
• Understood Fund Research funding programme within the £2 million Understood Appeal, awarding grants to PSP & CBD research projects including a £300,000 disease biomarkers project, £30,000 national care standards research, and £3,000 pilot study grants.
• Healthcare Professionals Hub Dedicated resource hub for neurologists, GPs, nurses and allied healthcare professionals, providing clinical resources, education events, and patient support guidance for treating people with PSP & CBD.
• Carers Wellbeing Hub Online and offline resource hub providing wellbeing information, support guidance and practical advice for family members and friends caring for someone with PSP or CBD.
• Befriending Volunteer Service Volunteer-led one-to-one befriending service providing companionship and support by phone or in person to reduce isolation for people affected by PSP & CBD.
• Link Volunteer Service One-to-one support service linking individuals affected by PSP & CBD with trained PSPA volunteers for in-person or telephone support following diagnosis or during specific challenges.
• Personal Guide to PSP & CBD Comprehensive printed and downloadable guide covering PSP and CBD symptoms, treatment options, planning ahead advice, and support resources, provided to each family following a diagnosis (a copy is provided for every £10 donated).
• PROSPECT Research Study and Network Research participation programme allowing people affected by PSP & CBD to register their interest and join PSPA Research Involvement Members (PRIM) to support PSP & CBD research studies.
• PSPA Online Community Forum Online community forum hosted on the HealthUnlocked platform for people affected by PSP & CBD to share experiences, information and peer support.
• Brain Donation Programme Programme enabling individuals affected by PSP & CBD to donate brain tissue to support scientific research into the conditions.

Quantifiable outcome

• £10 provides a copy of 'My Personal Guide' to each family coming to terms with a PSP or CBD diagnosis
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Partnerships

Five partnerships are on record, tiered core and minor.

• Marie Curie HospicecoreStrategic or Co-development PartnerMarie Curie Hospice in Bradford hosts the Bradford Support Group meetings, providing a venue for local people living with PSP, CBD, their families and carers to meet and receive mutual support.
• LOROS Hospice (Leicestershire)coreStrategic or Co-development PartnerLOROS Hospice in Leicester hosts the Leicestershire Support Group meetings for local PSP and CBD community members.
• JustGivingcoreOthersJustGiving platform handles online donations to PSPA with charity ID 2215. Used for general donations, event fundraising, and the Understood research appeal.
• HealthUnlockedminorOthersHealthUnlocked hosts PSPA's online community forum where members can share information and experiences related to PSP.
• Volunteer Support Group CoordinatorscoreOthers81 volunteer coordinators across UK run local support groups including Florence Bate (Devon & Cornwall), Christine Foulds (Bradford), Jenny Knight (Kenilworth), and Linda Moore and Linda Iaccarino (Norwich).

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Myaware (Myasthenia Gravis Association): UK charity supporting people with myasthenia gravis, a rare neuromuscular condition. Directly comparable operating model — small charity, support groups, helpline, research funding, and reliance on voluntary donations — though serving a different (autoimmune rather than neurodegenerative) disease.
• Parkinson's UK: UK charity supporting people with Parkinson's disease. Highly comparable as another neurological disease-specific charity operating a national support group network, helpline, research funding programme, and donor-driven revenue model — PSPA is the PSP/CBD analogue of Parkinson's UK's role in Parkinson's.
• Ataxia UK: UK charity for people with ataxia, a group of rare neurological conditions. Comparable rare-disease neurology charity with similar support services, research funding, and volunteer-led support group network across the UK.
• PSP Association (CurePSP) - US: US-based non-profit (previously PSP Association) dedicated to PSP, CBD and related brain diseases. The international sister organisation to PSPA, addressing the same conditions with parallel support services, research funding, and awareness mission — a globally natural peer.
• Cure Parkinson's: UK research-focused charity funding Parkinson's disease research with international collaboration. Comparable as a smaller, research-led UK neurology charity with similar donor model and overlap with PSPA in the neurodegeneration research funding space.
• Motor Neurone Disease Association: UK charity dedicated to motor neurone disease (rare neurodegenerative condition). Closely mirrors PSPA's operating model: small staff, volunteer-led support groups across the UK, a research funding programme, and services for patients, families, and healthcare professionals in a rare neurological disease space.
• Huntington's Disease Association: UK charity for Huntington's disease, a rare inherited neurodegenerative condition. Comparable as another rare-disease neurology charity with specialist support services, regional advisers, a research focus, and reliance on voluntary donations.
• Multiple System Atrophy Trust: UK charity dedicated to Multiple System Atrophy, another rare progressive neurological condition. The closest analogue to PSPA in terms of disease rarity, support services, research funding, and tiny UK patient population — likely operates at a similar scale and serves as a reference comparison.

Broad incumbents

• Alzheimer's Research UK: UK charity funding dementia research, including PSP/CBD-relevant tauopathy and neurodegeneration programmes. Comparable on the research-funding side and donor acquisition model, with overlap in scientific advisory roles; broader in disease scope.
• Alzheimer's Society: Large UK charity providing support and information for people affected by dementia, which includes PSP/CBD diagnoses. Comparable service portfolio (helpline, local services, publications, research funding) at much larger scale; an important referral partner and adjacent peer.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/PSPASSOCIATION
• Facebookfacebook.com/PSPAssociation
• LinkedInlinkedin.com/company/psp-association

Compliance4 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 Progressive Supranuclear Palsy Association