MSA Trust Impact Report 2023 - 2024

Welcome to our Impact Report for 2023 – 2024

Welcome to our Impact Report for 2023 – 2024

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elcome to our latest MSA Trust Impact report, highlighting some of the activities we at the Trust have undertaken over the past financial year; and celebrating the wonderful events and activities our amazing supporters do for the organisation throughout the year.

They ensure we can keep developing our services and supporting people with MSA, their families and carers, and the health care professionals who look after them.

Our busy year is detailed in the Support Services and Information section; the clinic visits of our MSA Health Care Specialists, the online and in person support groups, the information and fact sheets and countless other areas of work our Information and Services team undertook. The Social Welfare Specialist (SWS)’s workload has increased exponentially, as more people requested support with trying to navigate the benefits minefield. The Trust has responded to this exceptionally well and we were delighted to welcome a new member of staff to the SWS team in March ’24 to support more families.

I hope you will appreciate the effort the Trust is making in expanding our reach through several events organised in 2023, with more planned for 2024. These are summarised on pages 6 – 9 and includes everything from our supporter events in Sarah’s Wood, Nottinghamshire, and our memorial event held in Northern Ireland for the first time, to our Healthcare Professionals Study Day in Sheffield. Huge thanks to our volunteers, our staff and to everyone who attended for ensuring these events were a success.

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In the MSA Research section, we highlight how busy the Trust has been with renewing funding for Prospect-M, holding a second Research Symposium and launching another grant application round. We have a dedicated team who makes up the Scientific Advisory Panel (SAP) and who help us to make critical decisions around our research work. They will also help us review our Research Strategy in Autumn 2024.

I have to make a special mention of our five new Trustees who joined our Trustee Board in Summer 2023. It was wonderful to meet such dedicated supporters, including two people currently living with MSA, who can really keep us focused on the needs of the people we serve. We also had some trustees retire and I send our heartfelt thanks to them for their fantastic insights and support over the previous terms they have served.

Thank you to everyone who supported MSA Trust throughout the year, whether it was running a marathon, holding a tea party, abseiling off a building, you are all very special to us and your help is what makes the organisation tick.

Karen Walker Chief Executive

Our Support Services During the year 2023-2024 we supported more than 1300 people living with MSA and have seen 38% increase in registrations since 2020. Our services also support carers, family members and friends, as well as Healthcare Professionals who work alongside people with MSA.

2023

2023

2024

2023

2024

2024

1247 1336

1494 1620

2411 2231

People with MSA

Healthcare professionals

Carers, Family and Friends

Our MSA Health Care Specialists continue to work tirelessly across the UK and Ireland supporting people affected by MSA. This year they have: Ensured support is given for all families affected

by MSA regardless of where they are in their MSA journey - from those newly diagnosed to those making difficult decisions around end-of-life care.

They are funded entirely by donations and support NHS colleagues but are not part of the NHS. A ttended 107 MSA clinic consultations and 85 Support Groups to ensure in-person practical and emotional support for people with MSA and their carers.

H andled over 21,000 telephone and email enquiries (an increase of 53% since 2019) ensuring no one feels alone on their MSA journey.

“Without the support of MSA Trust and in particular Katie Rigg (MSA Nurse specialist) we would really have struggled. We would have found it very difficult to access information on the illness and its progress.

Words can't express the measure of love and support your group gave us.

I just hope and wish other patients and their families are aware of the wonderful service you provide.”

-MSA Trust member, Nov 2023

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Responding to the various needs of the MSA community We organised 187 group meetings (this includes digital and in-person Support Groups, Carers Groups and Coffee Mornings) this year for people with MSA and their carers. This works out to be more than one group meeting every other day.

Voice banking is meeting a real need

for people with MSA. The Trust has paid for more than a 120 people to record their voices and help them in the future when speech deteriorates.

In the midst of a cost-of-living crisis it is understandable that there is an increased demand for our Social Welfare Services.

We have responded by: Launching a new web resource on Financial Entitlements and Benefits Expanding our Social Welfare Specialist team to include an additional member of staff Successfully helping people claim an incredible £375,169 in entitlements of welfare benefits in the 2023–2024 year.

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A higher percentage of people with MSA who live alone attended our online support groups demonstrating that our range of different meetings are essential.

“Please accept our sincere gratitude for your help during our plight to find and secure a bungalow with our local authority, your support helped let us know how much you cared.” – MSA Trust member, July 2023 We launched a pilot counselling service for people living with MSA as we know life with MSA is not just challenging physically but also mentally too. This appears to be offering substantial benefits to those accessing the service, so we will be looking at how we can resource this moving forwards.

Our Information Provision We continue to be a leading source of useful and reliable information on all aspects of MSA. This includes our member webinar sessions for those newly diagnosed, symptom management information and support with planning for the future. In 2023 – 2024 year we have: ained accreditation to the PIF TICK G for another year. This is the UK quality mark for trusted health information and shows that all information produced by the Trust is reliable and up-to-date.

L aunched an important information resource on managing bladder problems and UTIs for people with MSA, which is distributed to all GPs of new people that register with us.

M aintained a stable level of visitors to our website with many reading our online resources or downloading guides and factsheets.

On average our Guide to MSA is downloaded over 500 times a month.

Raising Awareness and Advocacy

Our free magazine, MSA News, now reaches almost 5,500 readers. We have editions three times a year providing vital information on a wide range of issues relevant to families affected by MSA, as well as updates on the latest MSA research.

T he social networking service for health-related issues, HealthUnlocked is thriving with over 300 active members sharing their experiences of living with MSA. W e trained 633 Health and Care professionals so that they are better equipped to care for their patients diagnosed with MSA.

W e continue to advocate for the MSA community through our membership and attendance of policy groups such as the Neurological Alliance, Disability Benefits Consortium, Continuing Healthcare Alliance and Specialist Healthcare Alliance.

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Expanding our reach

As part of the Trust's commitment to raising awareness and reaching as many people as possible affected by MSA or involved in MSA patient care, we have been expanding our reach by organising MSA Trust events. These events aim to facilitate face-to-face interactions with individuals living with MSA, their caregivers, families and friends. Additionally, we aim to connect a diverse community of professionals dedicated to advancing MSA care and research. In 2023-24, we hosted:

May 2023 Thank you so much for the emotional day in Newry. I understand so much more now of what was wrong with mum, Dr Kobylecki was great at explaining things to us.

- MSA Candlelight attendee 6

For the first time, our regular memorial event, MSA Candlelight, was held in Northern Ireland. This event brought together over 15 families who have sadly lost a loved one to MSA. Attendees lit remembrance candles, listened to the lovely choir present, and chatted over afternoon tea. They also learned more about MSA research from Dr. Chris Kobylecki, the Chair of our Scientific Advisory Panel (SAP).

June 2023 We were selected as the charity partner for the Cereals Event, a two-day farming exhibition show. This incredible fundraising opportunity raised over £30,000 and provided us with a platform to raise awareness about MSA to an audience of 20,000 people who were previously unfamiliar with the condition.

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July 2023 We held our annual Sarah's Wood Summer Social, which was attended by 41 members, volunteers and staff. Despite the rain, we enjoyed a special day in the woods, remembering loved ones, meeting other families affected by MSA and getting together socially to support the Trust.

Oct 2023 49 healthcare professionals attended our 2023 HCP Study Day in Sheffield, and we are delighted to report that for the first time a further 116 attended the event virtually.

A very enjoyable informative and varied series of presentations. I now feel much more prepared to work with a client with MSA as a speech and language therapist.” 8

2023 HCP Study Day attendee

“We all attended the Tree Planting initiative and found solace in the experience. It will become a sanctuary for our family—a place where we can visit and cherish the lasting memory of our mother.”

- Family of a member who passed away in 2022.

Nov 2023 We held our annual Tree Planting event at Sarah Woods. We welcomed over 75 members to the woods and planted more than 150 oak saplings. We were also joined by five new volunteers who assisted us throughout the day.

Feb 2024 We held our second MSA Research Symposium, where we welcomed over 120 attendees.

The symposium focused on the early stages of Multiple System Atrophy (MSA), exploring advanced diagnostics, biomarkers and interventions. This marked a significant milestone in the collaborative efforts to understand and combat MSA, while also bringing together a community focused on addressing this challenging condition.

It was a pleasure to attend such an informative and wellplanned research symposium with experts in the field of MSA.” - MSA Research attendee 9

MSA Research

We renewed our commitment to funding the continued development of the Prospect-M database. This will be for a further five years and means the database will continue to gather information from participants to enable researchers to continue their research into MSA. We met with drug companies over the year to discuss the needs of people with MSA and where possible we enabled them to recruit people currently living with MSA, for their studies.

The Chair of our Scientific Advisory Panel (SAP), Dr Christopher Kobylecki, gave an update on current research at our memorial event, MSA Candlelight held for the first time in Northern Ireland.

In May 2023, we attended the Association of British Neurologists first All-Ireland and UK annual meeting in Belfast, May 2023

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Research Webinar In November 2023, we held our first ever research webinar for people with MSA. Led

by Dr Viorica Chelban from University College London, this webinar presented research currently being undertaken by three of our MSA researchers and the webinar was later opened to the attendees for questions. This is a great opportunity for our MSA community to ask questions about ongoing MSA research work and projects, and to hear the latest updates directly from our research community. We will hold two webinars per year and look forward to the MSA community gaining a greater say in the research they want to see happen.

2nd Research Symposium, February 2024 In February 2024, we held our second MSA Research Symposium, jointly hosted by the MSA Trust and UCL Queen Square Institute of Neurology. It focused on the early stages of Multiple System Atrophy (MSA), exploring advanced diagnostics, biomarkers, and interventions. We welcomed over 120 attendees, including clinicians, basic scientists, clinical research professionals, specialist nurses and industry partners.

Morning sessions began with an overview of genetics and recent advances studying the role of synuclein seed amplification assays. essions continued with a focus on alphaS synuclein structure, pathways and genetic risks associated with MSA. Discussions were made around best practices in establishing a biobank for

In February 2024, our Chief executive, Karen Walker attended Rare Disease Day in Ireland for the first time since the pandemic.

Presentation by Dr. Maria Xilouri from the Biomedical Research Foundation in Greece, which shows the role of other factors involved in the aggregation of aSynuclein in nerve cells of those diagnosed with MSA.

research, the latest in neuro imaging tools and improving communication tools for those with MSA. T he early afternoon sessions focussed on discussing the clinical challenges in diagnosing MSA in the early stages and what researchers were doing to address this issue.

F inally, the day ended with a session about ongoing MSA drug trials, with both of our sponsors, Theravance Biopharma and Ionis Pharmaceuticals, presenting results and ongoing studies.

The event underscored the significant progress and ongoing momentum in MSA research, showing the collective commitment towards advancing our understanding and treatment of this complex condition.

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Fundraising Stars

We receive no government funding and rely solely on voluntary donations such as those raised at challenge and community fundraisers.

This fundraising makes up a third of the Trust’s entire income and is a vital source of funding for us.

Without the dedication, creativity, and enthusiasm of our supporters, we would be unable to provide our free support services for everyone affected by MSA.

Thank you to everyone who has contributed this year, we are so grateful to the 233 supporters who participated in a challenge or community event in the 2023 – 2024 year.

Overall, our community fundraisers have raised a total of over £100,000 this year. From charity golf tournaments to raffles and prize draws, bake sales, and charity galas, these activities have played a crucial role in raising funds and awareness of MSA.

Running events were our most popular challenges, with highlights including the Edinburgh Running Festival, The Great North Run, Hackney Half, the Birmingham Great Run, the Royal Parks Half in London, the Belfast Half and the Manchester Marathon.

Deklin Gall’s boxing match in support of his Mum raised an impressive £2,125.

The Great South Run

“As the MSA Trust is funded by donations and relies on the kindness of people and organisations, I was determined to do something I loved which could raise funds for the Trust at the same time, I decided to undertake a 10-mile round trip around Coniston Lake in a kayak” – fundraiser Lindsey Cockerill

In March, during MSA Awareness Week, we organised our 3,300-mile challenge. The goal was to walk 3,300 miles— one mile for each person living with MSA in the UK and Ireland. We exceeded our target by walking 4,409 miles and raised a fantastic £5,575. A total of 94 members, along with Trust staff, participated in this effort.

10 incredible runners represented Team MSAT at the 2024 London Marathon. Their hard work in both fundraising and training paid off and raised over £21,824.77.

I wanted to raise awareness of MSA, a condition that my mum (Ruth) suffered from before passing away. 2024 marks 20 years since she passed and I will run in her honour, raising vital funds for further research and supporting families that are affected by MSA.- Simon Jenkins, 2024 London Marathon runner.

This year’s Christmas appeal raised an amazing £7,765.36 to support the work of our Social Welfare specialist helping those struggling the most in the cost-of-living crisis.

The Stretton YFC Tractor Run was held in memory of Nick Bates, former president, past chair, and long-time supporter of the Stretton Young Farmers Club. With 109 tractors participating, both vintage and modern, a total of £4,050 was raised.

Fundraiser, Navreet Dhillon completed the Scafell Pike climb with family and friends and is planning on the next challenge of Ben Nevis in 2024, exceeding a fantastic £4,000 so far.

MSA Trust Income and Expenditure 2023-2024

Please note this information is provided from the end of year management accounts, the full audited accounts will be available in October 2024 on the website. The information below does not include the Research and legacy income or the research expenditure, this is reported separately in the annual report.

1%

10%

12%

25%

MSA Trust Operational Income 2023-24

11%

10% 8%

MSA Trust Operational Expenditure 2023-24

49%

5%

15%

19% 20%

Total Operational Income £1,132,261

3%

12%

Total Expenditure £1,005,794

Charitable Trust

Governance

Community Fundraising

Fundraising

Corporate Giving

Information & Services

Gift Aid

Administration

Memoriam

Welfare Fund

Other Donations

Front line Services

Event Merchandise

To find out more www.msatrust.org.uk 0333 323 4591 support@msatrust.org.uk

www.facebook.com/MSATrust1 twitter.com/MSAtrust www.instagram.com/msatrust

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)