MSA Trust Impact Report 2022 - 2023

Welcome to our Impact report for 2022 – 2023

“The MSA Trust is the tiniest of charities who’ve provided amazing support since diagnosis, from a brilliant MSA Nurse to intervention support”

Welcome to our Impact report for 2022-2023 W

elcome to another Impact report, bringing some of the highlights of the past year and thanking you for your support in what I feel is our busiest year so far.

We welcomed a new Chairman of the Board of Trustees in March 2022, Professor Kailash Bhatia, and said a fond farewell to our outgoing Chair, Professor Clare Fowler CBE who left after 12 years of service on the Board. She wrote our first research strategy, supported the development of our services for those affected by MSA and had been a fantastic advocate of the charity. Thank you, Professor Fowler.

Our research grants were awarded this year to four projects and for the first time we focussed on funding clinical research. These are detailed in the Research Update section (Pages 6 - 7 ) We increased our Services Team and have welcomed another MSA Nurse Specialist, Debra Vincent-Scott in July 2022, whose role was funded initially by the CAF Resilience Fund. We now have a MSA Health Care Specialist (HCS) Team of 6 specialists, plus a Social Welfare Specialist.

Team welcomed back our Senior Fundraising Manager, Tanya, from Maternity leave in July, then prepared for a busy Christmas period and year-end. The Team has settled in well and has been positively received by our amazing supporters who undertook lots of interesting and challenging activities with their guidance. We are so grateful to everyone who supported us, whether through a fundraiser or direct donations, this is even more appreciated given the ongoing cost-of-living crisis. Thank you so much.

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The MSA Health Care Specialist (HCS) Team comprises of six professionals who cover the UK and Ireland, delivering their specialist medical support over telephone or email, at Support Groups or MSA clinics.

Responding to the various needs of the MSA community

Our Social Welfare Specialist helped to secure an incredible £263,800 in welfare benefits, helping those struggling most in the cost-ofliving crisis.

L aunched virtual Support Groups specifically for those caring for a person with MSA

We brought back our in-person Support Groups but continued virtual meetings ensuring our services are accessible to everyone in the post-pandemic era.

With very best wishes,

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in-person Support Groups

Karen Walker Chief Executive

H osted virtual sessions run by our Social Welfare Specialist covering non-medical issues such as Lasting Powers of Attorney O rganised group webinars for newly diagnosed members leading them through “An introduction to MSA” with a subsequent Q and A session.

Finally, I want to thank all those who completed the 2022 MSA Needs Survey. This has yielded lots of interesting results that will enable our Information and Services Team to develop a strategy for the next four years that hopefully meets the needs of the families we serve. Highlights are given on page 4 of this report.

We were pleased to welcome 2 new members to our Fundraising Team, Donna Quinlan as Head of Fundraising, and Eleanor Jarvis as the Events, Community and Digital FR Officer.

Fundraising has reached new heights with the help of our many loyal supporters and an update is on Page 8. A new Fundraising

Our Support Services

virtual Support Groups

9

carer Support Groups

12

coffee mornings

O ur ‘Wish I had known that a year ago’ factsheet was adapted for our members in the Republic of Ireland and covers all aspects of an MSA diagnosis, from mobility and local support organisations, to getting access to benefits in Ireland.

“As his only carer until now, the support I have had from the specialist nurse has been so helpful, factsheets so very useful for someone only recently diagnosed (with MSA), having been diagnosed with Parkinson’s for 20 years.” – A carer, 2022

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2022 MSA Needs Survey

Focusing on the Rare Disease Framework we held our second Needs Survey. We share some of the important findings below.

The results will directly influence the Trusts organisational strategy for the next four years.

This will include service development, new project work and impact on policy work in the wider charity and health and social care sectors.

Needs Survey Respondents People living with MSA Current carers P eople who had previously cared for someone with MSA

We received 520 responses to our second MSA Needs Survey of which 41% were people living with MSA. The results indicate that the majority of people (73%) say that MSA severely impacts their quality of life but the support they receive is very limited.

44%

of respondents felt help for their physical needs was poor or very poor

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Increasing awareness of rare diseases such as MSA, amongst healthcare professionals.

41%

of respondents were not given any information about what to expect from living with the condition on the day they were diagnosed.

Helping patients get a final diagnosis faster.

Improving access to specialist care, treatment, and drugs

82%

49%

of people living with MSA said it took between two to four years after experiencing symptoms to get their diagnosis. Some reported even longer. “ Every time we talk/see the doctor we have to explain again about MSA symptoms and the disease, it is very frustrating.”

For the full results of the MSA Needs Survey 2022, please go to our website or scan the code.

of people living with MSA felt the MSA Nurse Specialists provide them with valuable support.

Better coordination of care.

Over three quarters

of respondents with MSA stated that no-one coordinates their care locally.

Having the Trust to help is very reassuring, knowing you have always got a nurse specialist who will be able to help you and advise, and the Zoom calls are excellent.

“ I feel that more timely discussions need to be held between health professionals and families about palliative care and end of life care. I planned these and discussed my wife’s wishes. I feel that health officials stay clear of such discussions for their own emotional well-being.”

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MSA Research

Once again we have had a very full year for research and we were delighted to work with our Research Fellow Dr Viorica Chelban to host our first MSA Research Symposium. Our grateful thanks go to Dr Chelban for the incredible hard work she did to develop such an interesting agenda for the day. The day was a great success, allowing researchers the opportunity to share their findings, network with colleagues and harness shared enthusiasm and momentum for research into MSA.

Other Research News

Sessions focused on the latest basic science and clinical research into MSA:

Morning sessions looked

at the basic science of synucleinopathies, the genetics of MSA, the structural variants in MSA brain and considered DNA methylation and dissection of the SNCA locus with longread RNA sequencing.

W e covered updates on biomarkers and included presentations from Dr Chelban and others to consider which biomarkers can predict neurodegeneration and progression in MSA. W e welcomed some of our Trustees to the day and Professor Jalesh Panicker discussed the latest diagnostic criteria for MSA.

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T here was discussion on autonomic biomarkers; an update on the continued development of the Prospect-M database (supported by MSA Trust) and a session about the use of PEG (a feeding tube) in people with MSA. F inally, we had a session focussed on clinical trials currently starting, underway, or in analysis of results stage.

The day was a very packed one with more than 18 researchers presenting findings and information on drug trials.

We awarded almost £448,000 from our Research Fund to four projects, the details of which are on our website, www.msatrust.org.uk/cause-andcure/research-strategy/msa-trustresearch-grant-programme/#tab3 This year we awarded funding to two science based research projects and two clinical projects. If successful this will help to improve services for people with MSA in speech and language and develop a clinical care pathway in dysphagia.

We were incredibly grateful to our researchers, in particular the Principal Investigators who helped us to provide the necessary information to the Medical Research Council. This enabled an award of £237,604 to support the early career researchers working on our projects.

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Fundraising Stars

We are grateful to our Fundraising Stars for their amazing fundraising feats while completing mass participation events and community gatherings across the country.

The thrilling challenges of skydiving and bungee jumping was very polular with our supporters who raised more than £7,000 in sponsorship.

Luxury watch retailer, Patek Philippe employees raised £42,822 in memory their M.D. who had MSA and was much loved, through a gruelling cycle ride from Buckinghamshire to Geneva.

Other thrill-seekers raised funds through abseils, a 100km Camino Trail in Spain, and some who conquered the Yorkshire Three Peaks and Pen-Y-Ghent.

Other cycling challenges involved supporters riding across the country, local ones such as in Wolverhampton and our regular fundraiser, Ride London.

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Our regular mass-participation events were again successful with Great North Runners raising £9,064 followed by the London Marathon runners who participated in the COVID delayed race in October 2022.

Our loyal supporters continued to organise community events, raise awareness of MSA and invaluable funds for the Trust. From Tea Parties, choir singing to children's football matches they did it all.

Our November tree planting event in Sarah’s Wood proved to be very successful with over 200 saplings planted and we were delighted by such a good turnout of supporters.

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MSA Trust General Income 2022-23 Please note this information is provided from the end of year management accounts, the full audited accounts will be available in October 2023 on the website. This information below does not include the legacy income or research expenditure, which is reported separately in the annual report.

8%

15%

24% 18%

12%

6%

8%

1%

MSA Trust General Expenditure 2022-23

35%

MSA Trust General Income 2022-23

3% 12%

23%

Total Operational Income = £992,761

23%

12%

Total Expenditure = £906,725

Community Fundraising

Fundraising Costs

Charitable Trust

Information and Services costs

Corporate Giving

Governance

Gift Aid

Admin Costs

In Memoriam Donations

Welfare fund

Merchandise Income

Front Line Support Services

Other Donations Event Income

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)