MSA Trust Impact Report 2019-2020

Impact Report 2019-2020

“The MSA Trust has been a beacon of light at a very difficult time of coming to terms with my husband’s diagnosis”.

– A MSA Trust member

Welcome to our impact report for 2019-20.

We are so pleased to share with you some of the highlights of the year.

An excerpt from the introduction to our Annual Report 2019-20 by the Chair of the Board of Trustees, Professor Clare Fowler, CBE FRCP: The COVID pandemic officially reached the UK causing lockdown in mid-March, but until that time the MSA Trust had a good year. Many people have likened the effect of the arrival of COVID to that of a tsunami – certainly it was sudden, life changing and very, very alarming. However, under the leadership of our CEO, Karen Walker, the office and support staff moved swiftly to remote working, making savings wherever they could and ensuring that services remained available for all who needed them. Fortunately the welfare budget of the Trust increased just as COVID started to impact heavily on people with MSA and you will hear more about how that all worked out in next year’s report, when hopefully it may be over! But back to Spring 2020.

MSA Needs Survey 2019

During 2019, we undertook a survey looking at the needs of people affected by MSA. 284 people living with MSA and 371 people who had previously cared for a loved one with MSA responded. The results of this survey have been widely disseminated in the final quarter of the year and continue to be shared with others who want to work with the MSA community and improve services for people living with MSA. I send my good wishes to all those reading this and hope you keep safe in the coming months.

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MSA Needs Survey results We are very grateful to the 655 survey participants and a special thanks to members of our community (like Helen below) who agreed to be filmed talking about their life with MSA and some of the difficulties they face.

Emotional impact of living with MSA “My name is Helen and for most of my life I have been very independent. Since I have been diagnosed with MSA, all that has been wiped”

80%

of respondents living with MSA and

96%

of carers experienced depression and low mood

82%

of respondents reported that their social lives have been negatively affected

86%

of respondents reported that their sex life has been affected by living with MSA* – of these, just 7% were receiving any form of treatment

*of those who answered this question (n.189)

80% 80%

respondents ofof respondents living with MSA and living with MSA and

96% 96%

carers experienced ofof carers experienced fatigue tiredness fatigue oror tiredness

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Physical impact of living with MSA

73%

of respondents reported that MSA has a severe impact on their quality of life

97%

of respondents have difficulties managing basic bodily functions

100%

60%

14%

81%

respondents have experienced problems with movement

of respondents were totally dependent on a carer to perform all activities of daily living

of respondents are currently using a wheelchair

of carers found it difficult to manage problems with speech and swallowing

The MSA Trust

75%

of respondents report positively on the care and support provided by the four MSA Trust Nurse Specialists

The MSA Trust magazine

is the key link people have with the Trust from both groups surveyed

The Needs Survey (2019) is being used to develop and improve the services and support we offer to people living with MSA and their carers. We have also shared the results widely with other organisations that they might alongside MSA Trust provide improved services and campaign better for all those with this life limiting disease.

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Information and Services 620 new members registered with us 1 ,699 people with MSA and 2,711 carers,

family members and friends were supported through our services and Support Groups

chieved accreditation of the Patient A Information Forum (PIF) Kitemark showing our information resources are up to date, reliable and appropriate for our members an a successful MSA Study Day with 99 R Health and Care Professionals in attendance ne of our examples explaining the O difficulties people with MSA were having was used in a Parliamentary Public Accounts Committee meeting and we maintained our involvement with several key alliances covering issues relevant to those we serve

2 7 families received our Children’s Activity Book which supports children aged 4-11 with a loved ones MSA diagnosis.

Our 2019 MSA Needs Survey showed that

78%

of respondents received some kind of benefit or welfare support to help with living costs

Social Welfare Specialist Our specialist dealt with over 250 individual cases relating mainly to benefits and care uring this year we increased our Grants D Support for people affected by MSA who were experiencing financial hardship.

MSA Nurse Specialists “During this awful journey, her knowledge was vast, and she was the only one that was so supportive and caring. She was an angel and the only one who knew and understood what was going on.” (a carer, 2019) Collectively responded to over 20,000 calls and emails Ran 128 Support Groups which helped to reduce the isolation felt with having a rare disease

Volunteering Over 100 volunteers receive our Volunteer Newsletter encouraging them to offer support where they can 2 volunteers provided our office staff with regular support for administrative tasks and projects

Attended over 80 MSA clinics in the UK and Ireland

Our Scientific Advisory Panel of 10 volunteers helped us choose 4 research projects to sponsor

Trained over 600 Health and Care professionals in hospices, care homes and hospitals throughout the UK and Ireland.

Our MSA Trustees attended 4 Board meetings to support the governance of the Trust.

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Fundraising and Community Our Fundraising Stars have enabled us to continue our vital work while doing everything from Marathons and swims, to collections and charity cricket matches!

Here are some highlights :

Our MSA Trust running and cycling events, including the London Marathon raised an incredible ÂŁ40,000 while over 20 Milk Sugar And Tea parties were hosted to support our MSA Nurse Specialists.

60 engraved bricks with the names of

those who had MSA, those who have helped the MSA community or those living with MSA were laid down at Sarah’s Wood in Thoresby, Nottinghamshire. This is our Path to a Cure project - a path through the woods, created by bricks symbolising the steps we are taking to defeat MSA.

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MSA Trust ABN Research Fellow Dr Viorica Chelban

Glial Cytoplasmic inclusions in MSA

Research In November 2019 a call for research projects was widely advertised in the research community. 12 applications were received and peer reviewed, before our Scientific Advisory Panel, led by the Chairman Doctor Christopher Kobylecki met in February 2020 to decide which of the excellent applications received would be recommended to the Board of Trustees for an award of funding.

In total the funding for the 4 grants will reach £512,647 over a period of 3 years. Trustees were pleased that Manx MSA will support the funding of the fourth project ‘Identification of Longitudinal Biomarkers in MSA' with 50% of funding. This sort of collaboration helps the Trust to expand its research programme.

Grants were awarded to:

3. Dissecting the role of the

Autophagy-lysosome pathway (ALP) in Multiple System Atrophy pathogenesis Dr Maria Xilouri BRFAA, Athens, Greece

1. Unravelling the molecular pathology

of multiple system atrophy through an integrative approach to DNA methylation, transcripts and proteins Dr Conceição Bettencourt, Queen Square Brain Bank, UCL Institute of Neurology

4. The Identification of Longitudinal

Biomarkers of MSA Professor Henry Houlden and Dr Viorica Chelban Institute of Neurology, UCL

2. Investigation of somatic DNA copy

number gains of SNCA (alpha-synuclein) in different brain regions in MSA subtypes Dr Christos Proukakis Queen Square Institute of Neurology, UCL

The 4 projects are detailed on the MSA trust website

https://www.msatrust.org.uk/cause-and-cure/2020-research-grants

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Finance 2019-2020 MSA Trust Operational Income

MSA Trust Expenditure

1% 7%

2%

20%

12%

17%

24%

24%

11%

8%

17% 6%

34%

17%

Charitable Trust income Community Fundraising Corporate Giving Donations Event income Investment income - General Merchandise Income

Governance Frontline Support Services Welfare and Advocacy Work Information and Support Services Fundraising and Event costs Administration costs Travel costs

Figures are taken from MSA Trust Management Accounts 2020. Full audited accounts are available from October 2020 on the MSA Trust website and will include the Annual Report. These full accounts will include legacies and research awards.

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

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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)