[you+us]=beating MSWhat we achieved together in 2011

Around 100,000 people in the UK have MS. It affects two million more.

The MS Society is the UK’s leading MS charity. We fund research, give grants, campaign for change, provide information and support, champion the role of MS specialists and lend a listening ear to those who need it.

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38,000 members

9,000 volunteers

233 staff

One aim: to beat MS

The MS Society is supported by a huge network of volunteers and fundraisers across the UK. Since 1953, we have been working together to find a cure for MS. Join the Fightback against MS and with your help, we can beat it.

We will fund and promote research

into finding the cause of and cure for MS, and into improving care and services for people affected by MS.

ensure that the MS Society produces up-to-date, accurate and accessible information tailored to meet the needs of people affected by MS and to help educate MS professionals.

provide support to all people affected by MS.

continue raising standards of care for all people living with MS.

lead the MS agenda by working to increase awareness of the devastating impact of MS on people’s lives, influence decision-makers, and inform about the help, support and services the MS Society can provide.

‘It is so valuable for people affected by MS to have a voice.’ Alan, Research Network Volunteer

Our members help guide and shape all of our work. Together we set out five aims to find a cure and help improve the quality of life for people affected by MS so that they can live life to their full potential.

the (re)search is onProfessor Robin Franklin, left, Director of the MS Society Cambridge Centre for Myelin Repair says ‘we know that MS is caused by damage to myelin but we don’t know how to stimulate its repair. Myelin is the insulating substance that protects the nerve fibres and is essential for the proper functioning of the nervous system’.

We’ve been supporting world-class research in this

area since 2005 because we hope that this work will help to develop a therapy to stop or reverse the damage caused by MS.

In 2011, we helped make possible a significant breakthrough by identifying a molecule in the brain called RXR-gamma which appears to play a role in myelin repair. By targeting this molecule it may be possible to encourage the brain’s own stem cells to repair myelin, which could slow or stop the progression of MS.

Further research could lead to a therapy in 10–15 years. We’re delighted that the generosity of our supporters allows us to continue funding this ground-breaking work.

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The MS Society is the largest not-for-profit funder of MS research in the UK. Each year, we look to increase our spend on research into MS. We’re committed to understanding more about the condition. Giving us the best chance of finding a cure and improving care and services for people affected by MS.

Research funding decisions are made after consultation with health and science experts as well as people affected by MS. By involving people affected by MS we can be sure that we are funding the most relevant research.

To further maximise the impact of our funding we have formed lasting partnerships with different organisations around the UK and internationally.

£3.6mawarded to

research grants.

Throughout 2011, we awarded £3.6m to 21 research studies and secured collaborative funding worth nearly £1m from partner organisations to help fund six of these projects. Projects included understanding the causes of MS, developing and evaluating new disease modifying treatments, and improving symptom management, care and support.

With support from the MS Society, Professor Rona Moss-Morris, left, developed an online programme using cognitive behavioural techniques to help alleviate the fatigue caused by MS. The pilot study of MS Invigor8 was successful and we hope to see further work to fully test the potential benefits to people with MS.

Hopes of a breakthrough

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12,000people already follow us on twitter – join our community @mssocietyuk

Sue Polson (left) was diagnosed with MS in 1998. She became frustrated with the seemingly slow pace of research and the fight for new treatments.

‘In the summer of 2011, I had an unusual request. A course leader from the University

of Edinburgh Medical School wanted to improve the module given about MS.

Apparently the students had voted the MS module as the most boring part of the

course! The students were to think of the questions they would ask if

speaking directly to a person with MS and then film my answers. Then the students would research elements of what I said.

‘There were about 10 questions ranging from those on

symptoms, to opinions on treatment and the use of stem cells. The students found the exercise stimulating and interesting and have followed up different threads of the answers. I believe we have an important role to play in the education of future professionals and only by interacting with them can we ever hope to improve the understanding of MS as a disease. I grasp every opportunity to speak publicly about MS, and find audiences are keen to know more. That gives me great satisfaction.’

It is essential for people with MS, health care professionals and the general public to have relevant and accessible information about MS. In 2011, our website was rebuilt around the needs of people with MS, making information easier to find. We have continued our award-winning work to foster

vibrant online communities on our forums and Facebook page.

The education sessions we held on benefit changes were vital for people concerned about the Government’s welfare reform agenda. Our plans to develop an online ‘MS Academy’ will ensure that health care

professionals continue to have the first-class training and information they need for treating people with MS. At the heart of our information services are the voices of our membership, people affected by MS.

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Dave Wilkinson is a young dad from Wales with 11 year old twin boys. He was diagnosed with MS in 2010. He got help from the MS Society’s short breaks and activities fund to pay for a four day trip of a

lifetime to Disneyland Paris.

‘When I was diagnosed with primary progressive MS, I spent time looking at the

MS Society website. The financial information helped me apply for DLA, but I also noticed

the Society’s grant fund. I looked into this further for a very special

reason: my 11 year old twin boys, who I’d always promised to take to Disneyland. I’m a single parent and my boys are my best friends and my rock. We always played football, went for bike rides, and I enjoyed

being a child again in their company. In 2011, my mobility got worse so I decided to plan the trip then.

On my sons’ birthday, I did a big treasure hunt which led to a poster of Disneyland and the words… We are going to Disneyland! If only you could see the video we made of their faces, I cry every time I see it. The trip was absolutely fantastic. It gave me a sense of freedom and relief again, as I hadn’t been on a holiday in eight years. We left with a head full of memories that will last a lifetime.’

on your sideLiving with MS isn’t always easy and it doesn’t only affect the person with the condition. Partners, children, parents and friends are all affected in some way. At the MS Society we offer a variety of support services to make sure that everyone affected by MS can access the support they want and need. This may mean getting financial or practical support, getting help to arrange a short break or respite care, or having the opportunity to meet other people affected by the condition. In 2011, we began a huge

programme to recruit and train a network of new support volunteers, who can provide one-to-one support across the UK through our branches. Our staff and volunteers also continue to provide valuable support through our helpline, email service and support branches. It really couldn’t be done without them.

Pure magic£1.5mOver £1.5m was awarded in

grants to people affected by MS for respite care,

family holidays, MS-related equipment, transport and

other support.

‘Sometimes being listened to is enough to help someone start dealing with things. We encourage people to come together in groups, which can help them feel less isolated. Being a Support Volunteer is very rewarding. You see people change – their shoulders go back, their head goes up and they smile.’ Liz, Support Volunteer

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service across the boardLiving well with MS means having access to the right services to meet people’s needs. This might include having local access to an MS Specialist nurse, being able to see a

physiotherapist when necessary or making sure that the right support options are available. We campaign both locally and nationally for fair and equitable services across the UK. Where service provision is under-developed, we work with planners and commissioners to improve it. We have developed MS specific online tools to show local health and social care structures when the service they provide is good value for money. In Belfast, we reviewed the services on offer at our day

centre and updated the care plans of our users to make sure we were providing what they wanted and needed. As we improve MS services across the UK, we make sure that people with MS are at the centre of the design, development and delivery of these services.

Keeping help at hand

‘When I went to the doctors with what I thought was a piece of grit in my eye, I would have never imagined the diagnosis would be MS. My MS nurse first contacted me on possibly the worst day of my life, where I’d just been given the diagnosis of relapsing remitting MS. I was 19 years old and having to make all these hard decisions for myself. My nurse helped me a lot during that time but I don’t see him as much as I want. The MS services in North Wales are stretched and my nurse is the only nurse covering the whole area.’ Lowri Rowlands, Anglesey

MS nurses are an invaluable source of information and act as a kind of consultant, working with GPs, other therapists, employers and with MS charities. In Scotland, there is at least one MS nurse in each health board area. We work with other health authorities to improve coverage right across the UK.

12We protected 12 specialist MS practitioner posts from funding cuts.

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getting loud!We met with more than100 Parliamentarians in 2011. That’s an

average of one in seven MPs at party conferences.

Something to shout about

decisions that affect the lives of people with MS. This included persuading the National Institute for Health and Clinical Excellence (NICE) to commit to updating their out of date NICE guidelines on MS; prompting an inquiry into wheelchair provision in Wales; and securing important changes to Government welfare reform plans, including stopping cuts to mobility benefits for those in residential care.

The MS Society is the voice that influences opinion leaders, lobbies politicians and informs both professionals and the public to make lasting changes in the lives of people with MS. Whether using innovative Aardman animations, by launching manifestos (for governments in

the UK, Scotland and Wales) or getting out on the street as part of the Hardest Hit campaign, we aim to push the MS agenda by ‘getting loud’. During 2011, we toured the country with our roving video booth to collect stories and messages from all sorts of people. And we took your comments and

concerns to more policy makers than ever, putting MS firmly

on the political map. Getting loud meant we

were able to influence a large number of

major political

‘By getting out there and making our presence known we can show that we won’t be silenced. After all, if we don’t protest, the government are just going to go ahead with changes regardless.’ Paula, Morecambe

Shana Pezaro has been campaigning with the MS Society since she was first diagnosed with relapsing remitting MS in 2008. We enabled her to take her campaigning right to the top at political party conferences, including having a televised discussion with Deputy Prime Minister Nick Clegg. She has met with MPs to discuss welfare reform and the effect of the Government’s proposed changes on people with MS. ‘I really enjoy meeting all the MPs, peers and political media at conferences and other campaigning events. We keep in touch and it can be really useful to have those contacts when it comes to campaigning on particular issues. One thing I have learnt is that the vast majority of politicians go into politics because they want to do the right thing. If they aren’t doing what you need them to do, it’s often because they don’t know what that thing is. That’s why I make sure my voice gets heard by the people who have the power to actually change things.’

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our finances get involved!How we raised each £1

1 Donations and fundraising 44p (47p) 2 Legacies 37p (30p) 3 Fee income 12p (16p) 4 Trading and merchandising 4p (3p) 5 Investment income 1p (2p) 6 Grants 1p (1p) 7 Other 1p (1p)

income£28.9m(2010: £29.1m)

1

2

3

4

567

How we spent each £1 1 Support 28p (29p) 2 Ongoing respite care costs 19p (21p) 3 Fundraising 15p (14p) 4 Research 15p (11p) 5 Raising standards of care 8p (7p) 6 Information 8p (6p) 7 Leading the MS agenda 5p (5p) 8 Governance 1p (1p) 9 Costs of ceasing direct respite care provision 1p (6p)

expenditure£32.7m(2010: £35.3m)

1

24

5

67

3

8 9

(2010 figures are shown in brackets for comparison)

Help in the Fightback against MS…

To find out more visit our website: www.mssociety.org.uk/get-involved or call 0845 481 1577

VolunteerVolunteers are vital to us. We are constantly looking for enthusiastic people who can give a few hours a week to volunteer in our branches, raise funds, or work directly with people with MS and their families.

Make a donationA regular donation or one-off gift will help fund research and provide better support and treatments. You can also donate through Payroll Giving which is deducted directly from your gross salary, tax free.

Become a memberFor just £5 a year, members have an equal say in what the MS Society does and how we are run. Members also receive our bi-monthly magazine MS Matters and local newsletters.

Remember usMore than a third of our work is funded by wonderful supporters who have left us a gift in their will. Legacies are truly vital and a gift of any size will help future generations.

FundraiseFrom baking a cake to skydiving; there’s a fundraising activity for everyone.

MS SocietyMS National Centre372 Edgware RoadLondon NW2 6ND020 8438 0700www.mssociety.org.ukinfo@mssociety.org.ukHelpline 0808 800 8000

Multiple Sclerosis SocietyRegistered charity nos.

1139257/ SC041990Registered as a

limited company byguarantee in England

andWales 07451571

our vision A world free from the

devastating effects of MS

our mission To enable everyone affected by MS

to live life to their full potential and secure the care and support they need, until we ultimately find a cure

our strategy Putting the pieces together to beat MS