MSA Impact Report A5 online updated

Achieving Our Goals The Multiple System Atrophy Trust is the only charity registered in the UK and Ireland providing specialist support to people living with and affected by multiple system atrophy (MSA).

The Trust supports people with MSA, their families and friends, carers and health and care professionals. We provide individual advice and information, a helpline, a regular magazine and support groups spread nationwide. The Trust, through our donors, remains the sole funder of medical research to find both the cause of and cure for MSA.

Supporting People with MSA Many thanks for all the great work and support you give to us in Ireland. We are really blessed to have Katie to help us on this terrible journey and all the support staff in the office. (a carer)

Supporting Research MSA Trust has invested almost £1million in research over the past 5 years. This has supported more than 10 UK based research projects from Manchester, Bristol, Newcastle and London, looking at the causes of MSA and the neuroscience that will help us to understand the progress of this disease.

Currently 4 projects, totalling £150,000 are underway in London and Bristol - regular updates are given in MSA News.

MSA causes brain cells to shrink leading to severe problems with multiple bodily functions such as speech, movement and swallowing.

Many people with MSA will need

24/7care

The MSA Trust helps anyone affected by MSA. We have

3 MSA Nurse Specialists, 37 Support Groups and we fund vital research to find the cause and cure for MSA. We rely entirely on voluntary donations.

As I say, fascinating and the work being done sounds exciting with more to come.

Too late for most sufferers maybe, but uplifting all the same…..Thank you very much for your prompt response and the update. It was good to read (a donor) what’s happening.

Supporting Health Care Professionals More than 28 education training sessions delivered by our nurse specialists in one year.

Visits and training delivered in care homes, hospices and specialist clinics.

Over 5,000 professional guides distributed for Speech and Language, Physio and Occupational Therapists.

Managing our Finances Our expenditure - ÂŁ608,531

Our income - ÂŁ617,877

Research 6%

I nfo & patient support

13% 14%

35%

eneral G donations and merchandise

4%

eneral salary G and office costs

14%

35%

11%

pecialist S nurses 32%

Legacies Events In memoriam

overnance and G professional costs

27%

8%

Charitable trusts Gift Aid

For the full annual report and audited accounts for 2015-16 please visit: http://apps.charitycommission.gov.uk/Accounts/Ends52/0001137652_AC_20160331_E_C.pdf

Celebrating our Supporters, Volunteers and Trustees Thanks to our Trustees and amazing supporters, who do all sorts to raise the much needed funds that enable us to operate.

After 20 years we remain entirely funded by voluntary donations.

Our Volunteers continued to donate thousands of their freetime hours to support our work. The activities they undertook included: cheering at events, writing articles for MSA News, sitting on our board of Trustees and running Support Group meetings. Volunteers help us to provide information and friendship to people affected by MSA. Our volunteer support group leaders along with our Nurse Specialists facilitated 107 Support Group meetings during 2015-16. These continue to be a lifeline for many people with MSA, their carers and family, enabling the sharing of their journeys and tips and hints to help each other cope with this devastating life shortening disease.

Looking Forward 2017 is our 20th anniversary. We hope to bring more information and advice to people living with MSA, their families and carers by employing a 4th Nurse Specialist.

We have set a fundraising target of £20,000 in our 20th year to enable us to reach our goal.

We are excited by the prospect of reaching more people who receive this devastating diagnosis and thank all our supporters for their vital help in making this possible.

20 years of progress 1997– 2017 Below are some of our milestones from the past 20 years

May 1997 Sarah Matheson Trust (SMT) registers as a charity to provide information and help to anyone affected by MSA, (70 patients registered)

Mar 1998 First Trust Nurse Specialist appointed in partnership with St Mary’s hospital

Sept 1998 First MSA Support Meeting in London

Sept 2009 Appointment of first CEO (Part-time)

April 1999

April 2014

First multidisciplinary study day on MSA for therapists and nurses at St Mary’s Hospital, London

3 part-time MSA Nurse Specialists appointed

Feb 2001 Informal research group established leading to the establishment of a regular grant round for research projects.

Aug 2015 MSA Trust moves to present offices in Rotherhithe

Nov 2016 37th Support Group launches in Bristol

Sep 2001 Appointment of first Trust Research fellow in Neurovascular medicine

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)