Multiple System Atrophy Trust

What Multiple System Atrophy Trust does

Multiple System Atrophy Trust is a UK-registered charity (Charity Number 1137652 in England and Wales; SC044535 in Scotland) founded in 1997 by Sarah Matheson, who had been diagnosed with Multiple System Atrophy in 1993 and was frustrated by the lack of available information and support. Originally registered as the Sarah Matheson Trust, it was renamed to the Multiple System Atrophy Trust in 2010. The trust is the only charity in the UK and Ireland dedicated solely to supporting people affected by Multiple System Atrophy, a rare neurological disease with no known cure. It is governed by a Board of Trustees chaired by Professor Kailash Bhatia (Professor of Clinical Neurology at UCL Queen Square), with co-CEOs Karen Walker and Andy Barrick sharing the Chief Executive role since September 2024.

The trust operates a unified suite of free support services including five MSA Nurse Specialists providing clinical and emotional support, two Social Welfare Specialists offering benefits and care advice, regional in-person and digital (Zoom-based) support groups across the UK and Ireland, comprehensive MSA-specific factsheets, the MSA News Magazine, the Voice Banking Programme, and an online community forum via HealthUnlocked. It funds research through its Research Grant Programme, Clinical Research Fellowship (delivered in partnership with the Association of British Neurologists), and Small Research Grant Programme. Notable partnerships include the National Institute for Health and Care Research (NIHR) Parkinson's Disease Translational Research Collaboration (PD-TRC), and data-sharing agreements with NCARDRS (England) and CARIS (Wales) for rare disease registration. The trust holds PIF Trusted Information Creator accreditation and is registered with the Fundraising Regulator.

The trust's business model relies entirely on voluntary charitable donations, legacy gifts and bequests, event fundraising (running events, walks, cycling, ultra challenges, skydiving), merchandise sales via the MSA Trust Shop (Stripe and JustGiving integrated), and the designated Path to a Cure research funding campaign established in 2019. The trust explicitly receives no government support. Distribution occurs through NHS neurology clinic attendance by specialist nurses, regional support groups, digital platforms, and healthcare professional training. The team consists of approximately 15-20 staff plus volunteers across the UK and Ireland, operating from its headquarters at the Business Design Centre in Islington, London.

Name

Multiple System Atrophy Trust

Legal name

Multiple System Atrophy Trust

Website

https://www.msatrust.org.uk

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

11–50 employees

Short description

Multiple System Atrophy Trust is the sole UK and Ireland charity dedicated to supporting people affected by Multiple System Atrophy, providing free specialist nurse services, social welfare advice, support groups, voice banking, and research funding via charitable donations.

Ownership category

akta.pro rank

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Charitable Donations: The MSA Trust relies entirely on voluntary donations to fund support services and research. Individual donors contribute through one-time or recurring donations. The trust emphasizes that it receives no government support.
2. Legacy Gifts and Bequests: Donors can leave gifts in their Wills to support the trust's ongoing work and research programmes.
3. Event Fundraising: Fundraising events including running events, walks and treks, cycling events, ultra challenges, skydiving, and community fundraising activities.
4. Path to a Cure Campaign: Designated research funding initiative started in 2019 at Sarah's Wood, allowing donors to contribute specifically to cure research.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

The Multiple System Atrophy Trust provides free specialist support services to people in the UK and Ireland affected by Multiple System Atrophy, a rare neurological disease. Core offerings include MSA Nurse Specialist clinical and emotional support, Social Welfare Specialist benefits and care advice, regional and digital support groups, factsheets, the MSA News Magazine, voice banking funding, webinars, and research grant funding. All services are provided free of charge to patients, carers, families, and healthcare professionals.

Product overview

The Multiple System Atrophy Trust operates as a charitable organization offering a unified suite of support services for people affected by Multiple System Atrophy, a rare neurological disease. The core service offering includes MSA Health Care Specialist Services (nurse specialists providing clinical and emotional support), Social Welfare Specialist Services (benefits and care advice), and regional Support Groups (both digital via Zoom and in-person). Additional services include the MSA News Magazine, Factsheets, Voice Banking Programme, Webinars, and an online Shop. The Trust also funds research through its Research Grant Programme and Clinical Research Fellowship. The organization relies entirely on charitable donations and does not operate as a technology product company.

Differentiator

Problem solved

Functional benefit

Products and services

• MSA Health Care Specialist Services Specialist nursing support delivered by MSA Nurse Specialists providing practical, emotional, and clinical specialist support to people living with MSA, carers, and families across the UK and Ireland, including clinic attendance, email, and telephone support.
• Social Welfare Specialist Services Specialist advice and support with benefits, care arrangements, equipment, and grants, helping people living with MSA and their families access appropriate support services.
• Support Groups Regional in-person and online MSA Support Groups across the UK and Ireland providing peer connection, shared experiences, and specialist guidance for those affected by MSA.
• MSA News Magazine Regular publication providing updates, information, and support to people affected by MSA throughout the year.
• Factsheets Comprehensive MSA-specific factsheets and information covering a wide range of topics related to living with and managing MSA, produced independently and free from sponsor endorsement.
• Voice Banking Programme Funding and support for voice banking to aid communication for people with MSA when they are no longer able to use their own voice.
• Webinars Online educational sessions and presentations providing information about MSA for patients, families, and healthcare professionals.
• MSA Trust Research Grant Programme Funding programme supporting innovative research into Multiple System Atrophy, including the MSA Trust Research Grant Programme and Small Research Grant Programme.
• Clinical Research Fellowship Clinical Training Research Programme delivered in partnership with the Association of British Neurologists, providing specialist research training focused on the causes, prevention, and treatment of MSA.
• MSA Trust Shop Online shop selling merchandise to support the Trust and raise funds to help all those affected by Multiple System Atrophy.

Quantifiable outcome

• Free support services provided to all people affected by MSA regardless of ability to pay
• +2 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration6 records

Feature2 records

Partnerships

Four partnerships are on record, tiered core and minor.

• Association of British Neurologists (ABN)coreStrategic or Co-development PartnerPartnership for Clinical Research Fellowship programme delivering specialist research training focused on causes, prevention and treatment of MSA. The Myra Morris MSA ABN Clinical Research Training Fellow is hosted through this partnership.
• National Institute for Health and Care Research (NIHR)coreStrategic or Co-development PartnerMSA Trust supports the NIHR Parkinson's Disease Translational Research Collaboration (PD-TRC), a UK-wide group of experts formed via NIHR Biomedical Research Centres. The collaboration aims to speed up translation of disease-modifying therapies and precision diagnostics in PD and related disorders including MSA.
• National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)minorOthersData sharing partnership for patients in England to support rare disease registration, with explicit consent.
• Congenital Anomaly Register and Information Service (CARIS)minorOthersData sharing partnership for patients in Wales to support rare disease registration, with explicit consent.

Scale indicators3 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Ataxia UK: UK charity supporting people with progressive ataxias - another rare, currently incurable neurological disease group. Mirrors the MSA Trust's combination of specialist information, regional contacts, and research grant programmes at similar organisational scale.
• Parkinson's UK: The UK's largest Parkinson's charity; its remit explicitly extends to atypical parkinsonian syndromes including MSA. Operates an almost identical model (nurse helpline, local groups, research grants) at materially greater scale, making it the closest functional twin.
• Multiple Sclerosis Society: UK charity for people with MS providing information, local support, welfare grants, and a major research portfolio. Comparable integrated service-and-research model at much larger scale; useful benchmark for what the MSA Trust could grow into.
• PSP Association: UK charity supporting people with Progressive Supranuclear Palsy and Corticobasal Degeneration - atypical parkinsonian syndromes closely related to MSA, with a comparable small-team model, nurse specialists, support groups, and research funding focus.
• Huntington's Disease Association: UK charity for Huntington's disease offering specialist advisers, regional care advisers, support groups, and research grants - a near-analogous rare-inherited-neurological-disease charity model with comparable fundraising and service mix.
• Cure Parkinson's: Smaller UK charity specifically funding research into a cure for Parkinson's and related disorders including MSA. Directly competes for cure-oriented donor dollars and overlaps on the ABN/NIHR research network.
• Motor Neurone Disease Association: UK charity delivering nurse-led support, regional branches, equipment loans, and research funding for people with motor neurone disease. Highly comparable operating model and beneficiary profile (rapidly progressive neurological disease, no cure).

Broad incumbents

• Alzheimer's Research UK: Larger UK neurodegenerative-disease research funder; not MSA-specific but competes for the same donor mindshare around neurodegeneration and cure research, and provides a benchmark for scale of research-funding operations.
• Brain Research UK: UK charity funding research across the spectrum of neurological conditions including MSA. Broader remit and larger scale make it a competitor for general neurology-research donations rather than a direct service peer.

Others

• Neurological Alliance: Umbrella body representing more than 80 UK neurological charities including the MSA Trust. Acts as a sector-level peer for benchmarking policy influence, fundraising standards, and collective advocacy.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/msatrust
• Facebookfacebook.com/MSATrust1
• LinkedInlinkedin.com/company/multiple-system-atrophy-trust
• Instagraminstagram.com/msatrust

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles18 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Multiple System Atrophy Trust