Our Impact 2017

INSPIRING

HOPE O U R

I M PACT

2 017

Motor neurone disease is a disease like no other.

At present, some 4,500 people in England, Wales and Northern Ireland are known to be living with MND and the lifetime risk of being diagnosed with the disease is one in 300. A third of people diagnosed today will die within a year, more than half within two years.

Thanks to your generosity, the MND Association provides vital support to people whose whole lives have been turned upside down by MND. Across England, Wales and Northern Ireland our volunteers, campaigners, donors and fundraisers are doing extraordinary work in the fight against MND – making sure those affected have access to the right care, ensuring their loved ones have the support they need and campaigning to make sure their voices are heard by decision-makers.

Alun Owen, Chair, MND Association

This cruel disease attacks the nerves controlling the body’s muscles, eventually taking away the ability to walk, talk, eat – even breathe.

There are no effective treatments. There is no cure.

2

OUR IMPACT 2017

Every day, researchers whose projects are directly funded by the MND Association bring us ever closer to understanding the disease, working with partners across the world to turn this knowledge into potential treatments and ultimately a cure.

Until that cure is found, we know there is still much more work which needs to be done and it is only possible with the continued drive and commitment of our loyal supporters.

Within the pages of this Impact Report, you will be able to find out more about the experiences of people affected by MND, what it means to have the disease and the difference the MND Association has made to their lives.

You will also be able to read more about our plans for the future and how – together – we will continue to pursue our ultimate goal of a world free from MND.

Dena and her husband Sam Cole, who is living with MND

Today, as you go about your daily life six people in the UK will be diagnosed with MND, another six people will die from the disease.

With your support, we can help. We can continue to produce world-class care information, improve services, campaign for the rights of all those affected and fund vital research.

With your help, we can beat MND once and for all.

OUR IMPACT 2017

3

WE NEED

INFORM

When Jan’s husband, David, was diagnosed with MND in 2015 her world shattered.

While David remained ‘brave and stoic,’ Jan was devastated and was desperate for information.

She said: “I contacted our local branch and they were amazing.

I was told the Association was there to support us and that we should go along to their next drop-in session.

They were so caring.”

Sadly, David lost his battle with MND in September 2015, just 20 weeks after being diagnosed.

Jan said: “His journey with MND may now have ended, but mine will continue forever.”

4

OUR IMPACT 2017

MATION I was in floods of tears, not knowing where to turn. I said, I need help�

Jan Warren, whose husband David, was diagnosed with MND

Being diagnosed with MND is a frightening, confusing time and it is vital that our information is straightforward and easy to understand.

Thanks to your support last year, we were able to fund a comprehensive and growing library of information, which can be accessed by everyone affected by MND at every stage of their journey.

We tailor our information to suit individual needs, whether people prefer to speak to someone face-to-face, over the phone, join one of our branches or groups or download information sheets directly from our website.

We provide information in 21 languages and in a range of formats including braille, e-readable formats, audio and video. Our award-winning guide for young people What is MND anyway? and our eating and drinking guide are also available as web apps.

Our benefits advice service helped 812 people with MND navigate the complex welfare system to receive more than

ÂŁ1million

in benefits they were entitled to

Our MND Connect team spent

840

hours supporting callers over the year

80%

of people with MND accessing support through a branch or group rated it as either excellent or good

OUR IMPACT 2017

5

THE INFORMATION WE PROVIDED Our MND Connect helpline responded to

Living with MND – a very useful publication.

I can dip into it when I need to research something.

8,400 requests

Mr Steve Newman, who is living with MND

for information, help and support

Provided

10,700 pieces of information to health and social care professionals

The cognitive change masterclass was brilliant.

It was one of those courses where you could change your practice straight away.

Jennifer Benson, Speech and Language Therapist

6

OUR IMPACT 2017

The website has been a brilliant learning tool for me as a student nurse.

George Cade

Delivered

12 masterclasses for health and social care professionals across England, Wales and Northern Ireland, which have improved assessment of cognitive function

Around

World-wide demand Our care information is highly regarded internationally, with resources being translated and adapted for use in many other countries including Australia, Africa, Iceland and Russia.

4,500 health and social care professionals attended training events to learn about MND and improve standards of care.

IN 2017 We sent out more than

26,800 pieces of information to people living with, or affected by MND

84%

of people with MND who used MND Connect rated it as excellent or good

You are pioneers in MND care and support and it is wonderful to see your willingness to support other associations around the globe with your information.

Jerry Packer, MND Adviser and Registered Nurse, South Australia

Provided me with books for my nieces to help them understand about MND. Mr Stuart Neath, who is living with MND

3,106

people have accessed our online forum, a safe place to connect for people living with, or affected by MND

Thumb Print magazine tells me I’m not alone.

Mr Michael Thompson, who is living with MND

Our guide for teens

So what is MND anyway? available as an app or booklet was shortlisted by the British Medical Association Patient Information Awards

The fact that they (the Association) are there; the website, my wife uses frequently; AV's help and contact. We could not manage without them.

Mr Alan Loveland, who is living with MND

OUR IMPACT 2017

7

WE NEED

SUPPORT

Elizabeth was diagnosed with MND in 2017 and when her voice became affected, her family encouraged her to consider voice-banking.

With support from the MND Association, Elizabeth was able to record her voice and now uses specialist equipment to help her communicate with family and friends.

She said: “My voice is getting weaker and it is a great comfort to know that I am able to keep my own voice. I am so grateful to the MND Association for all their help.�

8

OUR IMPACT 2017

I knew it would be a good idea to bank my voice, but I was having difficulty finding out how. I got in touch with my regional care development adviser for help. I could not have done it without her.

Elizabeth Brock, who is living with MND

People living with MND are at the very heart of everything we do and while our fight for a world free from MND continues, we will do everything we can to ensure those affected now have the best support possible.

96

Our network of branches and groups provided help and support to people living with MND, carers and bereaved carers across England, Wales and Northern Ireland

We do this by guiding people through the complex benefits process and by awarding financial grants to people living with MND, carers and children and young people. We also loan out essential equipment to improve quality of life, including communications aids and riser-recliner chairs.

To further validate our commitment for access to the best care and support for people with MND as close to where they live as possible, we funded new MND specialist care roles across each region.

Local community-based support continues to be provided by our Association visitors and our network of 96 volunteerled branches and groups where people living with MND, their carers and families can access vital information as well as meet socially.

We helped

248

people across England, Wales and Northern Ireland to access communication aids

We awarded

223

children and young people’s grants totalling £54,000

OUR IMPACT 2017

9

HOW WE PROVIDED SUPPORT IN The Association helped me to purchase and fit a car hoist which has meant a great deal in my daily activities and quality of life.

Providing funds for a stair lift made life bearable.

Mr Stanley Simpson, who is living with MND

Mrs Simin Moshaver, who is living with MND

We loaned out equipment to

1,545 people

with MND including voice-banking equipment and specialist chairs

Thank you so much for the contribution towards my scooter. It has made a huge difference to my life.

Ms Nicola Drewry, who is living with MND

10

OUR IMPACT 2017

Support and friendship found at the local support group, look forward to the social meetings.

Mr Michael Fox, who is living with MND

Food is about love, nurture and support. This guide (Eating and drinking with motor neurone disease) is so important, not just for care and decision making, but for enjoyment and positivity, too.

Ms Dimple Thakar, MS Specialist Neuro-Dietition

Our 321 Association visitors, Association visitor co-ordinators and care services navigators supported

1,153 people living with MND

Funding to help towards cost of a holiday was really appreciated and needed.

Mrs Irene Morris, who is living with MND

2017 Provided financial help with my daughter’s driving lessons.

In July, we launched our 21st care centre in Norfolk and secured funding for a 22nd in Stoke-on-Trent

Carers’ grants, worth

£90,000 were awarded to 224 people affected

by MND

Mrs Sally Fawcett, who is living with MND

Support for health professionals in 2017 included:

Finding the right support and services immediately after diagnosis can help the whole family.

• Dedicated monthly e-newsletter to 1,700 professionals • 28 education bursaries of up to £250 were awarded

The Children and Young Persons Grant was so easy to apply for. To get support like this, really lifts your spirits.

Person affected by MND

We supported

Fadumo, who is affected by MND

3,106 people through our online forum

Having appropriate equipment (and funding towards it) has made living with MND much less stressful for both me and my disabled wife.

Mr Crispin Ellison, who is living with MND

OUR IMPACT 2017

11

WE NEED

CHANGE

Simon was diagnosed with Primary Lateral Sclerosis (PLS) in 2005.

In the years that followed, his local Association branch chairperson invited him to join their group and he soon became an ambassador and a campaigns contact.

He explained: “As a result of that involvement, I met with my MP in March 2015 and invited her to sign the MND Charter and join us at a reception in Westminster."

12

OUR IMPACT 2017

It was very easy to get involved.

As an ambassador and campaigns contact I got in touch with my MP and asked her to sign the MND Charter.

Simon Aspray, who is living with MND

We fight for, and alongside, people with MND, to make sure their voices are heard by decision-makers across England, Wales and Northern Ireland.

Our volunteer campaigners, many of whom have been affected by MND themselves, are relentless in their efforts and work together with our staff to make sure the complex needs of people living with MND are recognised by decision-makers at both a local and national level.

When a snap general election was called, we responded by launching a campaign focusing on the on-going issue of reassessment for Employment Support Allowance (ESA). As a result, the Department for Work and Pensions (DWP) announced a new severe conditions exemption for all new higher-rate claimants of ESA –

a huge step forward

for those who are living with MND who will now never have to be reassessed for this important benefit.

OUR IMPACT 2017

13

HOW WE EFFECTED CHANGE IN 2017 By the end of 2017 we had encouraged more than 60 councils across England, Wales and Northern Ireland to adopt the MND charter – a five-point document which sets out what care for people affected by MND should look like

The publication of the NICE guideline on MND was a great example of long-term, "top-down" campaigning by the Association. I believe the

Improving MND Care audit tool will help improve services in the short and medium term for people living with MND. Mr David Setters, who is living with MND

The All-Party Parliamentary Group (APPG) on MND launched a report on access to Personal Independence Payments (PIP) supporting our campaign for

an end to reassessments

14

OUR IMPACT 2017

It's important that councillors demonstrate our determination to work together when vulnerable groups need our support.

Councillor Teresa Murray, Medway Council

The audience reach from our awareness poster campaign My Eyes Say in June was

74 million featuring people with MND and our patrons, Stephen Hawking, Eddie Redmayne and Benedict Cumberbatch

By the end of 2017 we had recruited 33 volunteer campaigns contacts to fight for the needs of people living with MND across the three nations.

HOW WE SPENT THE MONEY

RAISED Whatever their personal reason for wanting to get involved, our supporters go to extraordinary lengths to support our work, some pushing themselves both mentally and physically to raise as much money as they possibly can.

Every donation, whether it is large or small, makes a huge difference, allowing us to support more people with MND right now, while funding vital research which will bring us closer to new treatments and the possibility of a cure.

69p

£3.68

£10.5 million

Out of every £1 you raised, we spent 69p to fund our work in research, care and campaigning, 15p to fund support costs within the Association, for example, finance, information systems and human resources and 16p on fundraising costs to generate our income.

For every £1 spent directly on central fundraising in 2017, £3.68 was raised in return.

We would like to thank all of our fundraisers and supporters and our branches and groups for everything they have done this year. Our fundraisers and supporters raised and donated an incredible £10.5 million during 2017 and our branches and groups raised a further £2.4 million.

SOURCES OF INCOME £1.2£2.8

Central £4.9

6%

£2.8

6%

15%

Legacies: £4.9 million 26%

55%

£1.6

£10.5 Branches

16%

£2.4

£3.1 £0.9

8% groups: £2.4£10.5 and million £1.6 55%

£3.1

Research: £4.5 million Campaigning and raising awareness: £1.6 million

8% £6.2

32%

24%

Total: £19 £4.5million

£2.4

16%

5%

Earned income: £1.2 million 13%

15%

5%

32%

13%

Care and support: £6.2 million

fundraising: £10.5 million

£0.9

26%

We are especially grateful to those supporters who remember the work of the Association in their Wills. In 2017, these generous gifts contributed £4.9 million to our income.

HOW WE SPENT YOUR DONATIONS IN 2017

£1.2 £4.9

£4.9

million

24% £4.5

£6.2

Volunteer development: £0.9 million Raising funds: £3.1 million Support costs: £2.8 million Total: £19.1 million

OUR IMPACT 2017

15

WE NEED

HOPE It is so important to me that I continue to support the Association as I know it is what Dave would have wanted.

Paula Solomon, whose husband died from MND

We are determined to beat MND once and for all, offering hope to everyone affected by this devastating disease.

Key to this vision is our investment in research, which we believe will take us ever closer to the discovery of new treatments and ultimately a cure.

Our research partnerships now span the globe and we have developed a strong reputation as a leading authority on MND research, something we will continue to build on in the years to come.

We achieve more, accelerate progress and avoid duplication if we work closely in partnership with other funding agencies, which is why we make collaboration and influencing a major strategic priority.

In 2017, the Board approved 29 new grants with a total value of

ÂŁ2.7

million

16

OUR IMPACT 2017

The total value of our research grant portfolio on 1 January 2018 was

ÂŁ15.5 million and we are currently funding 96 research grants

In 2017 we organised the largest ever International Symposium on ALS/MND in Boston USA,

1,274 delegates

attended from around the world to share information and expertise.

When Dave was diagnosed with MND in October 2015, he was determined to live life to the full.

to raise as much money as possible for the Association.

A keen runner, Dave met his wife, Paula at their local running club, and completed more than 30 marathons – often in fancy dress.

Sadly, Dave died in February 2018, but Paula remains as determined as ever to continue the work they started together by raising money and awareness of the Association’s work.

Even after being diagnosed with MND, Dave took part in two marathons and was determined

OUR IMPACT 2017

17

HOW OUR RESEARCH IN 2017 IS P MND is a devastating condition.

By finding the causes we will be able to find the cure.

Recruitment began for MIROCALS (Modifying Immune Response and Outcomes in ALS)

Prof Ammar Al-Chalabi, King’s College Hospital

an innovative clinical trial of a drug for controlling neuro-inflammation in people newly-diagnosed with MND

We completed the sequencing of sporadic MND samples from our DNA Bank as part of the Project MinE consortium, a project which aims to find the genetic basis of MND and ultimately, a cure. By the end of 2017, we had contributed almost 17% of all samples sequenced across the 19 participating countries.

Head Up Collar launched After several years in development, the Head Up Collar, which helps people living with MND who have progressive neck muscle weakness, was launched at our 28th International Symposium and is now available on the NHS. We were one of the organisations which funded the project.

18

OUR IMPACT 2017

Healthcare research helps to ensure that individuals receive the best care at the most appropriate time and has demonstrated that the way we deliver care can have an impact on survival and the quality of life for those living with MND. Prof Chris McDermott, Sheffield Institute for Translational Neuroscience

The hope is that one day there will be effective therapies to stop the underlying nerve degeneration in MND from occurring.

Prof Karen Morrison, University Hospital Southampton

ROVIDING HOPE FOR THE FUTURE MORE THAN

750

HAVE NOW JOINED THE MND REGISTER

A database which will give reliable information about the numbers of people in England, Wales and Northern Ireland who are currently living with MND. The information will be used to support the work of researchers and improve access to care, both now and in the future

56 participants have been recruited to take part in the AMBRoSIA (A Multi-centre Biomarker Resource Strategy in ALS) initiative. The study will identify disease fingerprints, or biomarkers, that will help to speed up diagnosis, track disease progression and improve the way drug trials are conducted

Training the brightest talent We supported six new PhD Studentship and Research Fellowship awards, continuing our longstanding record of attracting, training and retaining the brightest young scientists and clinicians in the fight to understand MND.

Without the Association’s support at a crucial early stage in my career, I doubt if I would have been able to continue in MND research and through this I have been able to train over 20 students and postdoctoral fellows, drawing a new generation of scientists into the field.

Prof Janice Robertson, University of Toronto.

The vision of a world free from MND is hugely ambitious, but I agree with the MND Association that the skill and dedication of scientists make this goal achievable in our lifetime.

Prof Colin Blakemore, University of London

We provided funding to upgrade the

MND has made its mark on so many people, and we will make ours in research to beat it.

ALS* Online Genetic Database (ALSoD) the longest-running, freely accessible ALS database in existence.

Prof Martin Turner, John Radcliffe Hospital, Oxford * Amyotrophic Lateral Sclerosis (ALS) is used as an umbrella term in other countries to describe all types of the disease, in the same way we use MND.

OUR IMPACT 2017

19

WE WOULD LIKE TO THANK None of the work we do to support people affected by MND would be possible without the kindness and generosity of our fundraisers, donors, corporate, trust and other supporters – and we are incredibly grateful.

Thank you

Thank you

Thank you

Thank you

Thank you

Thank you

20

Credit Suisse who raised an incredible £770,000 for the Association through our Charity of the Year partnership.

The 300 swimmers who took part in the London City Swim sponsored by Intertrust raising £119,000.

The Newby Trust who donated £32,000 to MND research.

The Ian Karten Charitable Trust who provided £25,000 to be spent on communication aids for people living with MND.

The volunteers of our 96 branches and groups for all they do to support people affected by MND while raising money and awareness at the same time.

The Wolfson Foundation and the JP Moulton Charitable Foundation for their pledge to support our work next year with donations of more than £100,000.

OUR IMPACT 2017

Thank you

Thank you

Everyone who remembered the Association in their Will, contributing £4.9 million.

The Greendale Charitable Foundation who donated £25,000 to spend on biomarker research.

Thank you

Everyone who donated to our September Research Appeal, raising £98,000.

Thank you

Our 4,000 community fundraisers who went to extraordinary lengths to raise £3.5 million.

Thank you

Thank you

Our 9,277 members including many people living with MND, who are the driving force behind our work.

Our growing online community of Twitter, Facebook and other social media users who help us raise awareness of MND and encourage others to support us.

We know how cruel this disease can be. That is why we need you to continue fighting, alongside us, for everyone diagnosed with MND. Richard Coleman, Chair Elect, MND Association

Thank you

Everyone who set up a Fightback Fund or Tribute Fund raising more than £1.7 million to help fund the Association’s work.

OUR IMPACT 2017

21

BUT THE FIGHT

IS NOT OVER There is still much more to do and so to our plans for 2018...

IMPROVING CARE AND SUPPORT In 2018, we will remain focused on making sure people living with MND can access the best quality care and support possible.

We are committed to expanding our network of care centres and will open our 22nd in Stoke-on-Trent, in partnership with the NHS. In addition, we will work to improve the standards of care provided by others through the implementation of our MND Care Audit Tool and recognise their achievements by encouraging them to apply for accreditation from the Association.

We have recently extended our criteria for carer support grants to ensure they are available to carers up to one year following bereavement and, in 2018, we will look at the ways we can continue to improve the support we offer.

Our voice banking project is

22

OUR IMPACT 2017

progressing well with volunteers now recruited to all the pilot areas. The number of referrals to the volunteers is steadily increasing and the next stage is to evaluate the impact the volunteers have in supporting someone with MND in banking and using their banked voice.

CAMPAIGNING AND RAISING AWARENESS The financial impact of MND will continue to be a focus of our work during 2018 and we will continue to advocate on behalf of people living with MND. The 2017 MND Costs report showed that housing adaptations are the biggest one-off cost people living with MND face and, after consulting with people living with MND, their families and carers, we will push to ensure those living with MND are able to access the homes or adaptations they need, when they need them.

We will also work to fully understand the implications of Universal Credit on people living with MND. Universal Credit is a benefit which has been introduced to replace Jobseeker’s Allowance, Housing Benefit, Working Tax Credit, Child Tax Credit, income-based Employment and Support Allowance and Income Support.

We are concerned about the process which people living with MND will have to go through to receive it, as well as the financial impact, as we believe some people with MND will be considerably worse off.

We will work closely with our volunteers, supporting them with their campaigning work and making sure they continue to be given the training they need.

We will work closely with those involved in caring for people living with MND to identify the key issues affecting people across England, Wales and Northern Ireland and bring them to the attention of decision-makers.

RESEARCH

The fight against MND is a global one and we will continue to work closely with our international partners in the UK, Europe, USA and Canada to develop new research tools which will accelerate progress.

To help accelerate progress, we will continue to seek new ways to influence, shape and propel research. We will actively pursue new collaborations and programmes, utilising the resources and skills of our research partners nationally and internationally.

We will initiate a new programme in collaboration with partners in the UK, Europe, USA and Canada, to develop new research tools to improve the quality and pace of MND research worldwide.

John James Anisiøbi, whose grandma died from MND

We will extend the use of our MND Collections, comprising DNA, cell lines and data through more active promotion of these important resources to the research community and we will fund research which seeks to further understand the biological basis of MND. We will support the recruitment phases of new and ongoing clinical and healthcare research studies, including pharmacological and non-pharmacological trials as well as our MND bio-banking and national register initiatives.

We look forward to hosting the 29th International Symposium on ALS/MND in Glasgow, Scotland in December.

OUR IMPACT 2017

23

THANK

YOU

We would like to thank our supporters for everything you have done in the past year. With your continued support and partnership we will continue to offer the very best support we can for everyone affected by this cruel, devastating disease, while we move ever closer to our vision of a world free from MND. If you would like to support us please visit www.mndassociation.org contact us on 01604 611860 or email us at enquiries@mndassociation.org /mndassociation

@mndassoc

Motor Neurone Disease Association, 10-15 Notre Dame Mews, Northampton, NN1 2BG Tel: 01604 250505 www.mndassociation.org Registered charity No. 294354 Š MND Association 2018