MSA Trust Impact Report 2021 - 2022

Impact Report 2021- 2022

“The MSA Trust gave invaluable support to dad, mam and us and we will be forever indebted to them for their care, compassion and expert advice” – children of David Thomson, person with MSA

Welcome to our Impact report for 2021-2022 A

nother year has passed and we are helping more people than ever before.

The monthly rate of new members joining is nearly double what it was in 2020. We have found some wonderful new staff to deliver our services and engage with researchers and health professionals.

They have ensured we remain dedicated to providing specialist support to all those affected by MSA. I hope that many of you have been able to speak with some of our team around the country and have received the support and help you required.

We said a fond farewell in November 2021 to our Social Welfare Specialist (SWS) Jane, who decided it was time to move on and spend some time on herself. Before she left she helped to recruit our wonderful new SWS, Sam and even had some time to ensure she helped with her induction.

Sam has hit the ground running and is a great help to people who need equipment or financial support when they receive this very difficult diagnosis. Sam had already generated over £42,000 of benefits claims for people with MSA by the end of the 2021-22 year.

Thanks to the success of a resilience bid to the Charities Aid Foundation in Autumn 2021, we have increased the health care specialist team who support people living with MSA. It was wonderful to welcome a new member of staff to support those living with MSA in Ireland and our latest recruit will join in July 2022 to support further the work of our South East Nurse Specialist, Samantha Pavey. We truly appreciate the lovely words you say about the work of our incredible specialist team, it is great to hear from you the people we serve.

Our Fundraising Team had a very busy year supporting people as they undertook lots of interesting and challenging activities to raise funds for MSA, we are ever so grateful for all the fundraising activities. Thank you for ensuring the organisation can continue to grow and survive.

With very best wishes

Karen Walker Chief Executive

2

Our vital work MSA Health Care Specialist Team W e recruited additional team members to cover Ireland, Northern Ireland and parts of Southeast England

They attended 100 specialist MSA clinics and conducted 32 teaching sessions

“I have just spent another two weeks in hospital and can honestly say that without the Trust and the specialised MSA nurses looking after me, my family and liaising with the hospital and doctors, we would be completely lost and forgotten and I would probably still be in hospital today.” – person with MSA

Emotional, Practical and Financial Support C reated a specific resource to support the emotional issues resulting from diagnosis and life with MSA

S ocial Welfare Specialist Service supported 320 individuals and families with care, support, adaptations, welfare benefits and grants

Majority of our Support Groups were digital, but we also managed to host some in-person ones.

This allowed us to keep in touch with the MSA Community and ease the isolation of living with a rare disease during lockdown.

Funded Voice Banking for 73 people to continue communicating with their loved ones

“I wanted to thank the MSA Trust for the most welcome grant given to us for our new adapted shower room.” – Terry and Jackie, members of MSA Trust Online Coffee mornings

In-person Support Groups

Digital Support Groups

3

Online Resources One of our MSA Nurse Specialists presented at an NHS England Nurse Conference to explain MSA to 3,000 ward matrons.

L aunched our Introduction to MSA Webinar Q&A sessions for new members of the Trust L aunched our new Web Hub for young people aged 11-17, helping to explain more about MSA and where they can get support.

We continue to work closely with healthcare professionals, organisations and platforms to raise awareness and improve understanding of MSA

Conducted first inperson event post-Covid with 65 health and care professionals who attended our MSA Study Day in Cambridgeshire

P artnered with Healthinote, where GP’s can ‘prescribe’ our information to their patients.

By March 2022 there were 282 active members discussing MSA and the challenges of living with it on our HealthUnlocked online community.

“It's been so good to have the forum for the past year, I've felt less alone with this (MSA) because of these wonderful people who understand this journey so well.” – Health Unlocked user 4

MSA Research

In the 2021- 22 financial year we continued to fund innovative research through our Grant Award Programme, our Clinical Training Research Fellowship Programme and our research database, Prospect-M. Some of our highlights are : I dentified MSA biomarkers that enables an accurate MSA diagnosis. Our work in this area continues with large scale genomic studies, RNA and DNA sequencing using different tissues (brain and blood)

285

people with MSA have been enrolled on the Prospect – M database, giving researchers an invaluable resource to continue their studies focussing on earlier diagnosis of multiple system atrophy

S uccessfully extracted and sequenced DNA from samples collected via the PROSPECT-M study.

This identifies clinical characteristics that can help clinicians characterize and diagnose the disease.

P lanning Clinical trials that range from treating MSA symptoms, others repurposing existing drugs, to those aimed at disease modifying therapies A ppointed our second Clinical Training Research Fellow, Dr. Yee Yen Goh, who began her 3-year fellowship in 2021, in partnership with the Association of British Neurologists

Here is what our first MSA Research Fellow, Dr Viorica Chelban had to say about our research work so far : “As a neurologist I am proud to have joined the world-

wide effort to tackle this disease. I am working to build a team from research centres around the world with the goal of turning MSA into a treatable disorder through advances in therapeutics research and clinical care. This work focuses both on the fundamental science underlying MSA and on clinical ‘translational’ approaches that will help improve care for sufferers.”

5

Fundraising Stars We are grateful to our Fundraising Stars for easing their way back into fundraising while completing mass participation events and community gatherings across the country.

Here are some of our highlights this year:

£28,315 raised by our Our Great North Runners completed the Tyneside half marathon effortlessly and brought in £7,141 Popular events such as Liverpool and Edinburgh Half Marathons collectively raised over £12,000 We really appreciate our community supporters who did everything while adhering to the pandemic guidelines. From a charity boxing match and bake sale to a simple fundraising walk – they did it all!

6

London Marathon runners who completed the 26.2 miles on the famous London route, and some who did the ‘virtual’ run in their own localities.

Our first ever virtual Milk, Sugar And Tea party to mark World MSA Day, was a huge success with around 20 families joining us online for a Tea party quiz.

Our popular Christmas raffle made a comeback with first prize being a weekend getaway to a luxury lodge in Thoresby park.

We are incredibly grateful for the grants

amounting to £152,655 received from 20 Charitable Trusts. A special thank you to CAF Resilience Fund which enabled us to expand our MSA Health Care Specialist Team.

7

MSA Trust General Income 2021-22 Please note this information is provided from the end of year management accounts, the full audited accounts will be available in September 2022 on the website. This information does not include the legacy income or research expenditure, which is reported separately in this report.

2%

2% 16%

5%

2% 5%

19% 4%

15%

MSA Trust General Income 2021-22

10%

MSA Trust General Expenditure 2021-22

15%

1% 2%

8%

26%

68%

Total Operational Income = £1.090 million Charitable Trust income Community fundraising Corporate giving Donations - Gift Aid Donations - Memoriam Donations - Other Event income Merchandise income

Total Expenditure = £1.070million Professional Fees Fundraising costs Information and patient support Office accommodation & costs PR, marketing & merchandise Research - general exp Staff costs Travel

Figures are taken from MSA Trust Management Accounts 2022. Full audited accounts are available from October 2022 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

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)