Impact Report
2025-2026
Find out how we fulfilled our commitments to support everyone affected by multiple system atrophy (MSA) and advanced research into the condition during the year.
It has been a busy year for the Trust with more people with MSA, their carers and relevant healthcare professionals contacting us, than ever before.
16% increase in office enquiries
Indicates an increased demand for the Trust’s specialist support services.
38% increase in
new registrations
Indicates we are reaching more members of the MSA community than ever before.
MSA Health Care Specialists Support
139 34 133 Support Groups facilitated
Teaching sessions delivered
Funded entirely by supporter donations, they continue to p rovide expert symptom management, emotional support and practical guidance w ork collaboratively with local clinicians at MSA clinic consultations i mprove care quality and raise awareness through health and care professionals training events
MSA Clinics a ttended
We hosted 89 in-person Support Groups, an increase of
14%
We continue to provide access to safe and supportive meetings – sometimes the only place where a person with MSA can meet someone else on a similar journey to them.
Annual Impact Survey
91%
of People with MSA feel the Trust’s varied range of support services has provided them with useful information about living with MSA.
In-person Support Group
70% of people with MSA say the Trust has enabled them to access support from other organisations. 2
In-person support groups reach up to 71% of carers and 67% of family members not living with someone with MSA, making them one of the most impactful community services.
329 members of the community from across the UK and Ireland responded. We used the survey to understand the impact the MSA Trust has on our MSA community and help direct future service development and strategy.
Respondent Response Rate 13% 8%
39%
40%
Person living with MSA Main Carer (Living with the person with MSA) Family Member (Living with the person with MSA) Family Member (Not living with the person with MSA)
“We were given a pack of information when we registered which has been so useful. They (MSA Trust) have also hosted in-person meetings which has helped us meet other sufferers. They have signposted us to where to obtain grants and just recently have agreed to fund voice banking.... we would be lost without the Trust.”
The MSA Trust website reaches over 4 in 5 people with MSA (82%), reinforcing its role as a key information source across the whole community.
The MSA News Magazine is the single most used service, accessed by 80% of people with MSA and 86% of carers.
MSA Health Care Specialists R espondents consistently report that support and information from MSA Trust Health Care Specialists helps them better understand symptoms, treatments and disease progression, enabling more informed decision-making. A ccess to expert knowledge increases confidence in engaging with GPs and other professionals, with many using this information to advocate for appropriate care, referrals and treatments.
Some members of our Health Care Specialists Team
70%
of people with MSA and Carers feel less isolated because of their engagement with the MSA Trust.
“Meeting other carers and people with MSA has helped us to feel less isolated as we are connecting with people who know exactly what we are going through.”
Many respondents emphasise the importance of feeling “not alone,” with the Trust providing comfort, understanding and connection, in what is often described as an isolating and overwhelming condition.
“Not a lot of people including doctors understand MSA or know what it is. The trust is a life line when you need help and support”
“The information we have had from the MSA Trust has been a great help and so good to have a kind and understanding voice to talk to and understand what’s going on in your world.”
22%
O f the who had an MSA Health Care Specialist present at their clinic appointments, said it was beneficial to them.
96%
Our Social Welfare Specialists espondents described R the benefits system as overwhelming with specialist support being instrumental in enabling them to understand eligibility, complete applications and secure financial and care entitlement.
3
Research Achievements
NEW IN 2025–26 Launching Our Small Research Grants Fund This year, we were proud to launch a new Small Research Grants Fund, offering awards of up to £10,000 to support clinical research with direct benefit for people affected by MSA. The fund is designed to provide support for practice-changing ideas that have the potential to improve care. We will be funding two projects through this programme:
UNIVERSITY OF BRISTOL
Goal Setting and PersonCentred Care
OUR CURRENT RESEARCH PORTFOLIO
Funding Research That Matters In 2025–26, the MSA Trust invested £480,548 in research across three leading research centres. Our portfolio of five large active grants spans the full spectrum of MSA science - from understanding the underlying biology of the condition to improving how people are diagnosed and cared for. Each project is selected for its scientific merit and its potential to make a real difference to understanding and treating MSA. We fund research that would otherwise struggle to attract mainstream investment, given the rarity of the condition. Our Scientific Advisory Panel includes lay members to ensure that the lived experience of people with MSA contributes to the funding decisions.
£480,548
Research expenditure 2025–26
We continue to fund science at the frontier of MSA understanding - from biomarkers and early diagnosis to care quality and clinical trial readiness.
4
5
This project aims to help people living with MSA and their carers identify what matters most to them and use this to guide healthcare decisions. It will develop a co-designed resource to support goal setting, improve communication with clinicians, and ensure care focuses on quality of life and individual priorities — not just symptoms.
UNIVERSITY OF BIRMINGHAM
Addressing Inequalities in MSA Research
This project aims to address inequalities in MSA research by establishing a large, prospective study in a highly diverse population to better understand how the condition presents and progresses across different ethnic groups. It will generate robust data on incidence, access to care and outcomes, while creating a patient registry to improve inclusion of underrepresented groups in future research and clinical trials.
Large research grants currently funded
3
Research centres supported
3
Clinical research fellows funded to date
3rd MSA Research Symposium KNOWLEDGE EXCHANGE
130
Attendees in 2025
48
Different institutions represented
In April 2025, we held our third MSA Symposium in collaboration with the UCL Institute of Neurology. The event brought together clinicians and researchers for a day of scientific exchange and collaboration. Sessions focused on identifying MSA before symptoms start to show, advancing early diagnosis, exploring biomarkers and discussing innovative interventions.
We presented the latest insights into MSA drug trials, highlighting promising developments as we deepen our understanding and strengthen our collective approach to combating MSA. The symposium offered a unique platform to exchange knowledge and explore potential research collaborations, ensuring that the science moves forward faster by connecting the people best placed to drive it.
CLINICAL RESEARCH
Research focus:
Identification of biomarkers to predict early diagnosis and progression in patients with multiple system atrophy. Dr Lei’s research addresses one of the most pressing challenges in MSA, the need for reliable markers that can identify the condition earlier and track how it progresses. Earlier diagnosis opens the door to earlier intervention and, crucially, greater opportunity to access clinical trials.
PATIENT VOICE IN RESEARCH
Shaping Clinical Research Through Community Partnership
This year, we supported a pharmaceutical company in developing a questionnaire to better understand the impact of neurogenic orthostatic hypotension, (sudden drops in blood pressure) a highly debilitating symptom of MSA, linked to the development of a potential new treatment.
Ensuring our MSA Community Voice Is Heard
Our Third Clinical Research Fellow In August 2025, our third MSA Trust Clinical Research Fellow, funded in collaboration with the Association of British Neurologists and supported by the family of Myra Morris,
began her post. Dr Linda Lei is based at University College London, where she works clinically in the MSA clinics alongside a dedicated research programme.
By shaping the survey design and supporting its dissemination to our community, we helped ensure that the voices of people living with MSA were central to this research process, and that their experiences could directly influence the development of future clinical trials. This kind of partnership reflects our commitment to ensuring that MSA research is not only scientifically rigorous but grounded in what matters to our community.
Fundraising Impact Our fundraising community is at the heart of everything we do. Each event, challenge and activity organised by our supporters helps fund the services, research and specialist care that people living with MSA rely on. This section celebrates their incredible impact.
Sarah’s Wood
Thank you to the 70 people who took part in our annual 3,300 mile challenge during #MSAAwarenessMonth.
Together they aimed to walk 3,300 miles - a mile for every person in the UK and Ireland estimated to be living with MSA. Collectively we raised £3, 437.
£18,751
An incredible was raised through our 2025 Christmas Appeal.
The funds will help cover the costs of running our education and training sessions for health and social care professionals.
744 153 individual donors throughout the year 6
new eventers joined us this year, taking on an event for MSA Trust for the first time
50 people joined us for our annual tree-planting event in November at Sarah’s Wood. We planted 150 oak saplings and enjoyed mulled wine, mince pies, and the chance to connect with staff and volunteers. “Sarah’s Wood is a very special place. It took myself and the children a while to visit. We are so glad we did and now look forward to visiting every year. It is a place where we come to remember and plant trees which we hope will grow and make this place even more beautiful. Coming here has helped us very much and become very important to our family”
Our community got involved different events with happening throughout the year; from marathons, skydives, bake sales, cycling challenges, sponsored swims, head shaves and even car rallies!
180
7
Highlights and Milestones Raising Awareness We launched a new training programme for health and care professionals, focused on the core principles and pathway of MSA. This free, CPD accredited module aims to raise awareness of MSA and ensure people living with MSA have their needs met at the right time.*
Sector presence – MSA Trust staff attended and advocated on behalf of the MSA community at; World Orphan Drug Conference (with TEVA) Hospice UK Conference
Welfare Reform Bill campaign - a real-life example of how the proposals would negatively affect a family living with MSA, was discussed at a Roundtable hosted by the Department of Work and Pensions, and in Parliamentary briefings.
International Congress of Parkinson’s Disease and Movement Disorders.
*This online course has been funded by the MSA Trust and an educational grant from Teva UK Limited. Teva UK Limited has had no input in to the educational content or organisation of this course.
MSA Trust Operational Income and Expenditure 2025-26 Please note that the below information is provided from the end of year management accounts. The full audited accounts will be available on our website from October 2026. Also, note that the information does not include the Gifts in Will income or the research expenditure, which is reported separately in the annual report.
MSA Trust Operational Income 2025-26
£1,028,710 2%
Events and Community
Memoriam giving
14%
Patient Support
7%
34%
Gift Aid Other Donations Other Income
£1,188,480
Governance
11%
Trust and Foundations
MSA Trust Operational Expenditure 2025-26
13%
Fundraising Office costs
12%
Support Services
18% 16%
45%
28%
To find out more
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0333 323 4591
system-atrophy-trust
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The Multiple System Atrophy Trust is a charity registered in England as a limited company. Company Registration No: 7302036. Registered Charity No. 1137652 (England & Wales) and SC044535 (Scotland)