Page 1

You make the

DIFFERENCE

Impact Report 2019


“I know how lucky we are to have the best care so close to home”

You’ve supported us from the beginning “We started the Association because we knew we needed support. We needed something because nobody could help us. We couldn’t believe it would grow like this and get so far. I go to support meetings now and see how people value the help they get, not just locally but nationally as well. They couldn’t have coped with MND without the Association.” Jenny Elston, Founder member

Being cared for by the North Midlands MND Care and Research Network has made a huge difference to Margaret, who was diagnosed with MND in 2017.

For forty years the MND Association has offered care, information and support to people living with and affected by MND – a devastating disease which leaves people unable to move, talk, swallow and even breathe.

The care centre was officially opened by our Royal Patron, HRH The Princess Royal, in June 2019 and Margaret, who speaks using a communication aid, has been attending regular appointments there ever since.

From small beginnings, the Association has grown into a diverse community of almost 10,000 members including people living with MND, their families and carers, loyal fundraisers, supporters and donors, passionate campaigners, researchers, clinical partners and dedicated volunteers.

She explained: “Before the care centre opened, I had to travel to Stoke-on-Trent, 22 miles away. Now I attend a regular clinic in Stafford which is just nine miles or 20 minutes from our home. The MND specialists there provide care with the greatest understanding, compassion and gentle humour and my family and I know we can always speak to someone if we need to. Combined clinics also mean I only attend one appointment.

Within the pages of this report you will be able to read more about the difference you have made to the lives of all those affected by MND during 2019. And, as we look ahead to the future, you will be able to find out more about the plans we are making as we continue to fight together for a world free from MND.

Making plans for the future after coronavirus: Page 22

“Together, the MND Association and medical team ensure they offer the best care to patients and their families. I know how lucky we are.”

40 years in the making 1979 The MND Patients’ Association - which became the MND Association later the same year - was established by a group of families affected by MND. With little information, co-ordinated care or support available, the group was determined to fill the void and start funding research. Today, the Association supports almost 4,000 people living with MND, their families and carers each year. In 2019, our research portfolio totalled £14.5 million.

2

Professor Stephen Hawking becomes Patients’ Patron. Professor Hawking worked closely with the Association, raising awareness of MND around the world. Following his death in 2018, the Association has continued to work closely with his family and The Stephen Hawking Foundation. In 2018 the family kindly donated £109,000 from the sale of his iconic wheelchair to the Association in his memory. 3


You help us to offer hope when it is needed the most… Mina with husband Ashwin. Below left: Ashwin who was just 57 when he was diagnosed with MND. Below right: Ashwin with Remal his eldest son.

“Caring for Ashwin was often very difficult, but we were very grateful to the Association for all their support .” Mina first became worried about her husband, Ashwin, during the summer of 2014. After a series of tests, Ashwin was finally diagnosed with MND in 2015. Mina said: “Ashwin wanted to be with me all the time and it made things very hard. I tried to sleep but he wanted me with him, even though we had carers through the night. I would wake and sit with him, but I was completely exhausted and couldn’t cope. He would be frustrated and get angry, but I told him none of it was his fault.” Mina explained how the Association helped to improve Ashwin’s quality of life and supported Mina at the same time by helping to pay for a wet room so she could bathe Ashwin downstairs. She said: “MND really is the most terrible disease and nobody can understand just how awful it is until they have experienced it themselves. I really don’t know what we would have done without the support of the MND Association.

People living with MND are at the heart of everything we do and ensuring they have access to the care and support they need is one of our biggest priorities. Our network of 392 Association visitors (AVs) fulfil an essential role in providing one-to-one support to people who are living with MND across England, Wales and Northern Ireland. As well as ensuring they have access to the information they need, our volunteer AVs are there simply to listen – offering confidential, emotional support at a time when it is needed most. Information is also available from the Association’s dedicated helpline MND Connect. During 2019, our team of volunteers and staff responded to more than 10,000 requests for help from people affected by MND, carers and health and social care professionals (HSCPs). At the same time, the Association continued to offer practical help by awarding support grants worth £1.2 million and carers’ grants worth £103,759. We also helped nearly 1,000 people claim more than £2 million in eligible benefits through our welfare benefits advice service.

“My parents ran a shop and were really well known in the community and so Mum, pictured, has lots of visitors in the home. The Lightwriter makes it possible for her to be part of the conversation, rather than just listening to what they say. It’s really important and makes such a difference. She lost her voice quickly and later her fine motor skills too and was unable to hold a pen, so the Lightwriter has been a lifeline.” Jay

“Our Association visitor, Maimie, pictured, was a friendly face at the start of our problems with MND, but she has become more than that. She is somewhere between a friend and a volunteer. She was able to help us to access grants from the Association and we are grateful for these.” Michael and Rachel

“Ashwin died in 2018. He was the very heart of our family and we still can’t believe he has gone.”

1980

1981 The Association funds its first full-time research project at Charing Cross Hospital, London. The grant was awarded to Dr Frank Clifford Rose, Consultant Neurologist at Charing Cross Hospital, London and in 1983, the results of his study were published. Dr Clifford Rose later became a patron of the MND Association and, in 2003, co-wrote a book for people affected by MND.

4

The Association starts to loan out equipment. Unable to access vital equipment from their local authority, the Association stepped in to help people with MND. In 2019, 1,350 people with MND had at least one piece of equipment on loan through the Association, helping them to maintain their independence and improve their quality of life.

1982 First study day for health and social care professionals (HSCPs) is held in Oxford.

The Association’s first Research Fellow is appointed.

The study day helped HSCPs understand all aspects of MND care. Today, the Association offers a comprehensive programme of training and support to help improve the care of people with MND. This includes professional access to the helpline MND Connect, care literature and opportunities to take part in masterclasses.

Patrick Doherty was appointed to study the differences between healthy motor neurones and those affected by MND.

5


You help us do more to improve quality of life Thanks to your support we are helping to improve the lives of people living with MND – through multi-disciplinary care, which is available through our care centres, equipment grants which ensure people can access the equipment they need and support grants which help to ease the financial burden of MND.

300

392

Association visitors like Nigel, pictured, who provide important one-to-one support

2,193,881

HSCPs attending masterclasses

page views were recorded on our website from those accessing our services and information

£1,260,764

89

worth of Support Grants helping 1,718 people living with MND

branches and groups

22

care centres we fund

£2,097,133

3,931

people living with MND were supported at one of 22 care centres. In our 2019 Improving MND Care survey, 90% of those who attended a care centre described the service they received as ‘good’ or ‘excellent’

1984

This appeal paved the way for celebrities to help raise awareness and funds. Today, our supporters include broadcasters Zoe Ball, Matthew Bannister, Charlotte Hawkins and Jeremy Vine; actors Gina Bellman, Benedict Cumberbatch CBE and Lily James and sports personalities Chris Broad, Stuart Broad MBE, Rob Burrow, Stephen Darby, Len Johnrose and Doddie Weir OBE.

2,307

members who inspire our work and drive the Association forward

1986 After actor David Niven died from MND in 1983, a celebrity launch of the David Niven Appeal at BAFTA, London raised more than £170,000.

6

9,950

was claimed through the Association’s welfare benefits advice service

subscribers signed up to the HSCP newsletter by the end of the year

1988

1990

The number of MND Association branches hits 40.

Jim Tew, a former Chair of the Association, receives an MBE.

Having started with just three branches in 1979, today the Association has 89 branches and groups which meet regularly. As well as offering an important point of contact for people living with MND in their community, they also campaign and raise money to support the Association’s work.

Jim was diagnosed with MND after a career in research. When the Association started to fund research studentships in 1998, one was named The Jim Tew Studentship, to recognise his great contribution to the work of the Association, and particularly his support for research.

The first International Symposium research conference of MND/ALS Societies was held in Birmingham attracting 50 researchers. The Association’s International Symposium on ALS/MND now brings together more than 1,000 of the world’s leading experts in MND research to talk about their work and develop working relationships. By working alongside colleagues around the world, we will learn more and increase our chances of developing new treatments and a cure.

7


You help us to give families the support they need…

“We all had fun and forgot about our worries for a while’” Twelve-year-old Penni-May has never known life without MND. Her dad, James, was diagnosed with the disease long before she was born, and she has grown up watching him cope as MND slowly takes over his whole body. As life has become more challenging, the MND Association has been able to offer James, Penni-May and her mum Sandra the help and information they need to not only make sense of what is happening to them, but also to enjoy the time they have together. They have received grants to help provide a mobility scooter for James and the chance for Sandra to get out once a week to take part in a French language course. Penni-May said: “We deal with every day as it comes and always hope for the best. I have been brought up to handle what MND can do and my mum and dad like me to talk to them about it. The MND Association has helped us a lot and has organised trips and activities for children who have family members with MND. We all went to the Big Picnic in Manchester last summer – everyone had fun and forgot about their worries for a while.” Penni-May’s dad was diagnosed with MND five years before she was born. Left: recent photos with mum Helen and dad James.

1990

As their loved ones come to terms with their diagnosis, we know that children and young people often find themselves in need of our help too. Thanks to the generous support of our fundraisers and donors during 2019 the MND Association has been able to do even more to help them. As well as launching a new storybook called Why are things changing? featuring three stories about MND, the Association has developed a web hub, MND Buddies, providing a safe place for young children to learn more about MND through games and colourful activities. We brought families together by organising special events such as the Big Picnic in Manchester which was attended by 135 people including 60 children. And we were able to help make life a little bit easier by offering 192 grants to children and young people worth more than £45,000 – helping to pay for everything from short breaks to drama lessons.

“We are delighted to report Rory, pictured, has safely returned from his Scottish island-hopping adventure with his Granny and Grandpa. He had a truly memorable time with lots of memories made. We would like to thank the MND Association for their contribution to Rory’s grant.” Ned and Heather

1992 Our MND Connect helpline is launched. What started as an informal listening service for people living with and affected by MND, has now grown into the Association’s helpline, MND Connect. Each year, our highly-trained advisers and volunteers respond to more than 10,000 requests for information and practical and emotional support by phone and email.

8

Every day, families are living with the devastating effects of MND.

“The book written for children Why are things changing? explains in simple terms that things are going to change…but there will be someone to help, or a way of doing things that you can all join in with.”

1993 The Association helps establish the International Alliance of ALS/MND Associations. From just 20 founding organisations in 1992, this global network has now grown to more than 50, representing 40 countries. The Alliance is an international community for ALS/MND Associations around the world, promoting research and sharing knowledge. It also organises Global MND Awareness Day each year on June 21.

The Association conducts its first MND patients’ survey. The first survey, completed by 22 people affected by MND, covered topics such as health and social care and was designed to help us listen to our members. Our surveys have led to many initiatives being launched including the Association’s welfare benefits advice service in 2017. In 2019, the service helped 921 people affected by MND identify more than £2 million of benefits which they were eligible to claim.

Our first MND Care and Research Centre was opened at King’s College Hospital, London. Offering multi-disciplinary care - which is proven to increase life expectancy and improve quality of life – the opening of the Association’s first care centre was a significant milestone. The Association now has 22 care centres and care networks reducing the need for multiple appointments and stressful journeys. 9


You make sure we can offer a helping hand when things get tough When a loved one is diagnosed with MND we know the whole family will need our support. People living with MND need access to clear and concise information to help them understand what is happening to them while children and young people need resources to help them learn about MND in their own way. As well as providing those resources, the Association makes sure that people with MND have access to the equipment they need to help them live the best life possible.

685 51,129

factsheets and publications were downloaded from our website and 23,811 publications sent to people affected by MND

“It was good to meet other people living with MND at the Big Picnic in a relaxed and informal situation.”

1,484 12,444

publications were downloaded from our website by health and social care professionals

volunteers work tirelessly to support our work. In June, the Association marked its 40th anniversary by inviting 250 of our volunteers and supporters to an event at Boughton House in Northamptonshire.

7,381

unique page views of our MND Buddies web hub between its launch in August and December

people who are living with MND like Kaysa, pictured, received support to access communications aids and voice banking

7,644

£103,759

calls were answered by our helpline MND Connect

provided in grants to 265 carers

2,275

people registered to use the online care forum

913

publications for children and young people were sent out

£45,000

worth of grants awarded to 192 children and young people affected by MND

1995

10

1996

1997

First book written for young people affected by MND.

Riluzole was licensed for the treatment of MND.

When your parent has motor neurone disease was the first book written about MND for teenagers and was compiled with the help of a group of young people with experience of MND. We still use the same peer group review procedure to test and inform all new publications for children and young people including So what is MND anyway? which is available in print and a downloadable PDF.

In 1993 people with MND in the UK took part in an international trial of the drug riluzole, that led to it becoming the world’s first licensed drug for the treatment of MND. In 2019, the Association was involved in the TUDCA-ALS trial, looking at repurposing a drug as a treatment for MND. We are also a partner in the TRICALS consortium which is looking to test more than one drug within the same trial.

1999 Spring conferences bring local information to people with MND.

The internet opens up global possibilities for the MND Association.

Our Regional Focus events provide people with an opportunity to meet the Association’s team and find out more about the work we are doing in their area. They are held four times a year in locations across England, Wales and Northern Ireland to give members of the MND community a chance to come together and get the support they need. In 2019, Regional Focus events attracted 305 people.

In 1999, the MND Association’s first website was launched. 20 years later, the Association worked alongside people living with MND, HSCPs and Association supporters to develop a new website, designed to ensure people affected by MND can find the information they need quickly and efficiently. In 2019, our website recorded 2,193,881 page views. We continue to embrace new and emerging technologies to keep the MND community connected.

11


You help us to campaign for real change…

“Financially, it has been difficult. We are very grateful for the Association’s support” For Josie and her family, MND has been life changing. In 2017, her husband Mark was diagnosed with MND, 18 months after first experiencing symptoms. Since then, his mobility has continued to deteriorate leading to a reduction in his independence. Josie is now Mark’s carer, having left her job to look after him full-time. She said: “Financially, it has been very difficult, and we have been very grateful for the support the Association has given to us. In 2018, we started looking into housing adaptations, but we found we didn’t qualify for financial help, even though Mark has MND. “So much additional stress was put upon us at a time when we were already dealing with one of the most stressful situations we have known. Thankfully, the Association gave us a grant towards the cost of a wet room which has made such a huge difference. It’s reassuring to know that support is there.”

MND often places an unimaginable financial burden on families at one of the hardest and most stressful times of their lives. The Association is determined to support them. Our Scrap 6 Months campaign was launched in 2018, calling for a change in the law when it comes to the Special Rules for Terminal Illness (SRTI) fasttrack process. In 2019, thanks to our campaigners, the Department for Work and Pensions (DWP) announced it would be changing the guidance which explains the fast-track process to clinical staff. A review of how well the benefits system works for the terminally ill was subsequently announced by the former Secretary of State for Work and Pensions, Amber Rudd. The Association is also supporting people affected by MND when it comes to improving access to housing adaptations and accessible housing. The Act to Adapt report published by the Association in 2019 concluded that people affected by MND currently face enormous difficulties, from the time it takes to go through the process to the high costs involved.

“I have had so much support from a lot of people, including the MND Association, and am positive about my life but the last year or so battling the system to get the benefits I was owed has been very hard. It shouldn’t be like that.” Martin

“I am fortunate to have a relatively slowly progressing form of MND and so have time to advocate on behalf of those whose progression is much quicker. Half of people die within two years of diagnosis – with that type of nuclear bomb dropping on your family, especially if you have young children, you really shouldn’t have to waste precious time fighting the system.” David, volunteer campaigner

Left: Josie and husband Mark who was diagnosed with MND in 2017

2001

2002 Rex Cheetham receives a silver floral medal at the Chelsea Flower Show for his garden design Memories of Rex.

12

We take every opportunity to talk about MND, whether that be on TV, national newspapers or online. Coverage of the 2019 Chelsea Flower Show, which saw our founder member Martin Anderson MBE and Sue Haywood from Sue Haywood Garden Design Ltd win a gold medal, led to articles in magazines and on TV. In 2019, we reached an estimated audience of seven million.

2003

2006

The All-Party Parliamentary Group (APPG) for MND is formed.

The national MND DNA Bank and Clinical Database is launched.

This cross-party group meets in Parliament to discuss matters related to MND. Over the years they have produced a series of reports which seek to change policy for people with MND. The 2015 APPG’s report on the lack of communication aids for people with MND, Condemned to Silence, spearheaded a major shift in the way that Eyegaze could be provided by NHS England.

In 2003, the Association, together with individuals, donors, funders and Association branches, created a national DNA Bank for MND. In 2015, further funding enabled Professor Chris Shaw to create a new library of cell lines. The combined resource is now known as the MND Collections and is invaluable to researchers around the world. In November 2019, the Association received the UK Biobank of the Year Award.

Healthcare research funded by the Association to determine the benefits of non-invasive ventilation (NIV). By 2010, this project proved that NIV helped people with MND live longer and enjoy an improved quality of life. Thanks to the hard work of our campaigners, NIV is routinely offered to people with MND, as stipulated in the National Institute for Health and Care Excellence (NICE) guideline on MND.

13


We’re behind you – every step of the way Making sure people living with MND have access to the care and support they need is always at the top of our agenda. When important issues arise, our network of campaigners are there to help, working alongside local councils, representatives from the Welsh Parliament and Northern Ireland Executive and with MPs in Westminster to make sure the voices of people living with MND are always heard.

12,000

70

campaign volunteers who are dedicated to making the voices of people with MND heard

people sent emails to Parliamentary candidates during the 2019 General Election campaign

80

MPs and Peers attended MND events in Parliament during 2019

93

councils had adopted the MND Charter by the end of 2019

7,391

campaign network members

850

55,455

people, like Ciara, pictured with her husband Joe and their family, shared their experiences of housing adaptations, strengthening our report Act to Adapt

people signed our Scrap 6 Months petition

2007

2008 A pledge of £1 million, is made in memory of Lady Edith Wolfson who died from MND, to fund Lady Edith Wolfson Clinical Research Fellowships.

14

The Lady Edith Wolfson Fellowship programme includes clinical research grants jointly funded by the Medical Research Council and non-clinical grants to develop the careers of young researchers. We are grateful for the Wolfson Foundation’s support during 2019.

2009 HRH The Princess Royal becomes Royal Patron of the MND Association. The Princess was already involved with MND Scotland when she agreed to support the Association’s work in England, Wales and Northern Ireland. Her Royal Highness took on her role as our Royal Patron for an initial period of three years and has very kindly continued – and increased – her support since then. Since 2008 she has attended 23 events on our behalf, helping to raise significant awareness and funds.

2010 The discovery of mutations in the FUS gene as a cause of inherited MND is published by an international team of scientists. The team included researchers at King’s College London, with some funding provided by the MND Association. Although mutations in the FUS gene only cause a small number of cases of MND, further research is proving fruitful and has broader implications for the mechanisms behind sporadic as well as familial MND.

The Association’s online forum is launched. The forum provides an important and safe space for people affected by MND to share their concerns and chat with others going through similar experiences. The ‘Ask MND Connect’ option allows people to speak directly with our trained support staff as well as providing us with an opportunity to share information. Since its launch, more than 91,000 messages have been posted.

15


You are at the heart of our fight for a world free from MND… In recent years, a global explosion of interest has helped to ignite genuine optimism for the future of MND research. Significant advances in genetics mean that research into MND has become one of the fastest-moving fields in neurological science – and thanks to your help, the MND Association is right at the heart of it. The Association’s vision is simple – we want to see a world free from MND – and to help us achieve that goal we continue to invest in ground-breaking research which we believe will give us the best chance of discovering new and effective treatments and ultimately, a cure.

We are also involved in some exciting clinical trials, including the MIROCALS trial and the TUDCA-ALS trial which are investigating whether drugs used to treat other conditions, such as kidney cancer and liver cirrhosis, may be effective in treating MND. Similarly, the Association is approving plans to support a new international trial, called PRELUDE. This will test whether lithium may slow the disease in a specific group of patients who carry a variation of the UNC13A gene, which is associated with the speed of MND progression.

We continue to collaborate with partners around the world, including with the research centres and ALS/ MND foundations which have come together to form the Treatment to Cure ALS (TRICALS) consortium alongside clinicians and people living with MND. The consortium aims to speed up the search for effective treatments by running drug trials more efficiently and more effectively, including testing more than one drug within the same trial. We have real hope for the future At the same time, we play a leading role on the world stage by organising the annual International Symposium on ALS/MND – the biggest event of its kind anywhere in the world. As well as being a place where researchers can come together to build important relationships and share their latest findings, the Symposium attracts an increasing number of drug companies who see potential opportunities for developing new treatments, something which I consider to be hugely encouraging.

We’re working with our partners to accelerate progress Your support allows us to play a leading role in innovative projects like Project MinE which aims to discover more about the disease by analysing the DNA of thousands of people living with MND. The UK is one of 20 countries which contribute to the project and this year the Association was able to sequence a further 50 genomes, bringing us close to our overall target of 2,200 genomes – almost 10% of the worldwide target of 22,500 genomes.

“I take opportunities to support the Association when I can, most recently at a legacy event in Cardiff, where I often meet people living with or affected by MND which is so valuable and also humbling. I would like to thank the MND Association for continuing support in so many ways and especially thank the Wolfson Foundation for the financial backing for my research; it means so much to me and my team.” Tatyana Shelkovnikova

“Your support allows us to play a leading role in innovative projects like Project MinE which aims to discover more about the disease by analysing the DNA of thousands of people living with MND.”

2012

We have never been more hopeful for the future of our work. On behalf of all our members thank you for all that you have done – and continue to do – to support us. Dr Brian Dickie, Director of Research Development

“The Fellowship has undoubtedly been the first step in helping to launch my career as an aspiring clinician-scientist with an interest in regenerative neurology and MND in particular. It has opened many doors for me, giving me the opportunity to collaborate with outstanding scientists, present research at national and international conferences and to be involved with cutting-edge translational research.” Dr Arpan Mehta

2014 £500,000 from the Department of Health to improve wheelchair services.

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“...the Symposium attracts an increasing number of drug companies who see potential opportunities for developing new treatments, something which I consider to be hugely encouraging.”

This grant built upon the very significant fundraising undertaken by former Association patron and longstanding supporter, Joel Cadbury, and his friends, who helped establish and fund our wheelchair service over many years. In collaboration with manufacturers, we developed a powered neuro wheelchair and were shortlisted for an innovation award. Today, the powered neuro wheelchair specification is used by many wheelchair services for people with MND.

Discovery of the C9 gene mutation.

Launch of the MND Charter.

Red Flags tool is launched.

For some years, researchers had known that a cause of inherited MND was connected to Chromosome 9. In 2012, two separate international teams identified that the mutation, or change, was an expansion within a gene called C9orf72. Since this discovery, the Association has funded grants to study the way in which the C9 genetic expansion causes disease. By understanding the causes, we can get closer to developing treatments.

The MND Charter is a five-point plan setting out what good care for people living with MND looks like. Since 2012, the MND Charter has been signed by more than 30,000 individuals, health boards, clinical commissioning groups and health and wellbeing boards. It has been adopted by 93 councils across England, Wales and Northern Ireland and is being used by the Association to campaign for improved services.

GPs and others in the primary care team can make a great difference to the quality of life for people with MND, with timely care, support and symptom management. The Red Flags tool for GPs was devised to help identify the early symptoms and progression of MND to enable prompt early referrals to a neurologist. 17


Leading the world in the search for a cure By investing more in research and continuing to work closely with partners around the world we are confident that one day we will achieve our vision of a world free from MND. Together we can make it happen.

888

300

researchers and clinicians attended the 30th International Symposium on ALS/MND held in Perth, Australia in December

people with MND and 204 without MND have donated samples and clinical data to Project AMBRoSIA. All of the DNA samples donated by people with MND during their first clinic visit have been sent for genetic analysis.

£14,500,000 value of our research portfolio as at 31 December

200+

people participating in MIROCALS trial to test Interleukin - 2 as a potential new treatment for MND

In November our UK MND Collections received the 2019 UK Biobank of the Year Award

84

projects make up our research portfolio

people, all wearing their country’s Association T-shirts - took part in the first ever Global Walk to d’Feet MND at the Symposium

2,011

people signed up to the MND Register by 31 December

£3,043,000 was approved and allocated to 30 new research grants

2014

18

400+

2015 Association funded international researchers identify mistakes in the TUBA4A gene as a new cause of the inherited form of MND.

A film about the life of Professor Stephen Hawking called The Theory of Everything premiered in London.

TUBA4A, encodes the tubulin 4A protein of every cell, including motor neurones. This protein forms the structure of the cell, transporting important molecules within the cell, including growth factors critical for neuron survival. Defects in this cellular transport system have been shown to be a cause of neurodegeneration and MND.

The film starred Association patron Eddie Redmayne and was based on a memoir by Jane Hawking. Eddie, the Hawking family and The Hawking Foundation have all continued to support us over the years and during 2019 by attending events and donating money.

The Ice Bucket challenge raises more than £7 million for the MND Association. This global mass participation phenomenon went viral on social media during the summer. Participants were filmed having a bucket of ice water poured over their heads before publicly nominating others in a bid to raise awareness and funds. The money raised allowed us to accelerate a number of key research and care projects.

The MND Association announces the creation of Lady Edith Wolfson non-clinical research fellowships. Following the Ice Bucket Challenge funding, we launched a new grants scheme with an award of four grants in the first year and two new grants awarded in the following years. Of the eleven grants awarded so far, five have completed, five are ongoing and one is due to start in 2020. 19


How we spent your donations

You help us to achieve more…

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.

Our fundraising highlights:

68p

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, helps to make a 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.

SOURCES OF INCOME*

out of every £1 raised was spent on funding our work in research, care and campaigning, 17p to fund support costs within the Association, for example, finance, information systems and human resources and 15p on fundraising costs to generate our income.

£4.03

HOW WE SPENT THE MONEY RAISED*

was raised for every £1 spent directly on fundraising in 2019. When legacy income and expenditure is included, this rises to £5.87.

(£) million

(£) million

Care and support

£6.1

Legacies £5.3

Research

£4.1

Branches and Groups

£2.0

Earned income

£1.0

Campaigning and raising awareness

£1.4

Volunteer development

£0.8

Fundraising

£2.8

Support Costs

£2.9

Central fundraising

£10.5

TOTAL £18.8

TOTAL £18.1

* These numbers are provisional and subject to final approval by the Board of Trustees. For a full breakdown of our financial position, our annual accounts will be available later in the year.

was raised by our incredible fundraisers and supporters in 2019 and our branches and groups raised a further £2.0 million. We would like to thank everyone for all they have done this year.

The Linbury Trust donated £50,000, the second of four gifts in memory of prima ballerina, Annette Page. In March, The Royal Opera House also hosted a tribute performance in memory of Annette, attended by members of her family and many of the Association’s supporters.

The Wolfson Foundation donated £375,000 during the year to fund The Lady Edith Wolfson Non-Clinical Fellowship Programme helping us to attract the brightest scientific talent in the fight against MND.

Including legacies, our fantastic branches and groups contributed more than £2.4 million, helping us to achieve more for people affected by MND.

was donated in legacy gifts to the Association which have made a significant difference to our income. We are enormously grateful to those supporters who remembered the work of the Association in their Wills.

The role of the gene NEK1 is a significant discovery as part of the international research project, Project MinE. The UK is one of 20 countries which are contributing to Project MinE and the Association’s contribution continued this year with an award to sequence a further 50 genomes, bringing us close to our overall target of 2,200 genomes.

NICE guideline on MND is published. After campaigning by the MND Association and our supporters, the NICE guideline on MND was published. To support the guideline, the Association introduced a free-to-use audit and benchmarking resource called Transforming MND Care to help clinics test their compliance within the guideline.

We would like to thank The Freshfield Foundation, The William and Frank Brake Family Trusts, the Edith Murphy Foundation, The Childwick Trust, The Jordan Charitable Foundation and the Bruce Wake Charitable Trust for their enduring support of the Association across many projects. Thank you to the Alan Davidson Foundation for its continued support via standalone and matched grants during the year. We were delighted that the Foundation run by Liverpool FC vice-captain James Milner supported our work for a second consecutive year.

Our thanks to the London Freemasons for funding of £100,000 to fully fund a prestigious three-year PhD studentship at University College London. This grant from the London Freemasons comes through the Masonic Charitable Foundation, which is funded by freemasons, their families and friends from across England and Wales.

2017 The discovery of NEK1 gene, part of the research project, Project MinE.

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A huge thank you to former Scottish rugby international Doddie Weir OBE for continuing to support the Association’s support grants programme with a gift of £150,000 – our partnership with the My Name’5 Doddie Foundation is now entering its third year.

Our 12-month partnership with Investec raised more than £136,000 and HSBC’s Financial Crime Compliance team raised £22,000 via an abseil at their Birmingham headquarters. Our partner, Morson International raised more than £30,000.

£5.3 million

2016

Our Christmas Appeal, to raise money to help support our work with children and young people, was our most successful appeal in 2019 raising more than £147,000.

Keta’s Journey – a 350-mile walk from Hartlepool to Godalming completed by family and friends in memory of Keta Hansen who lost her fight with MND in early 2019 – raised more than £100,000 and secured local and national press coverage.

£10.5 million

Once again, the MND community has helped us to achieve even more in the fight against MND by raising £4.13 million to invest in care, research and campaigning.

2018 Credit Suisse UK selects the MND Association as their Charity of the Year partner. Working in partnership with Credit Suisse UK, the Association helped devise a 12-month programme of fundraising activities including running, cycling, extreme sports participation as well as concerts, tin collections and officebased activities. The partnership raised more than £760,000.

Trial of digital advertising with the NHS. In 2018, we trialled digital advertising to neurologists and speech and language therapists on NHS intranet pages promoting voice banking for people with MND resulting in a 213% increase in requests for voice banking grants and equipment loans where adverts were placed.

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Looking to the future At the time of putting together our Impact Report, the UK finds itself in the middle of lockdown following the coronavirus outbreak earlier this year. As a result, the Association is revising its existing plans and services for 2020 and beyond to reflect the changing needs of the people living with and affected by MND across England, Wales and Northern Ireland. As always, our key priority is to support people living with MND and their families in this challenging environment, helping them to access the support that they need from Government and statutory services while still working towards our longer term vision of a world free from MND. Support to people with MND and their families: Our volunteers and staff have been in contact with everyone on our database who we know is living with MND to offer support and advice. During the pandemic, our volunteers and staff are using video technology to provide support to people affected by MND, directing them to information and resources on our website, as well as assisting with practical tasks such as shopping. We are also focussing on the needs of carers and considering the impact of bereavement on our community. We will provide information, guidance and support in relation to visiting loved ones who are nearing end of life, attending funerals and the grieving process.

You are our inspiration… Research Whilst some of our 2020 research plans have changed, we will use all available opportunities to continue to drive development and collaboration in research. The uncertainty around travel and large gatherings has meant we have cancelled this year’s International Symposium on ALS/MND, planned to take place in Montreal, Canada during December. Instead we are making plans to run a virtual Symposium as a replacement event, to enable international collaboration between researchers and clinicians to continue. We are continuing to assess research proposals through our funding rounds in anticipation of being in a position to award new research grants as soon as practically possible. Campaigning and raising awareness Our priority continues to be that people with MND get what they need when they need it. It is particularly important that they have a strong voice at a time when health and social care services will be under extreme pressure. We will also drive forward the Scrap 6 Months and Act to Adapt housing adaptation campaigns when it is appropriate to do so.

A message from our Chief Executive: One of the greatest strengths of our Association is its community – extraordinary people who are determined to do whatever it takes to improve the lives of all those who are affected by MND. It’s a community made up of our members, volunteers, campaigners, fundraisers and donors – people just like you – who give up their time freely to raise money and support the work of the Association right across England, Wales and Northern Ireland. Thanks to your continued dedication and support, in the past year we have been able to do even more to support families affected by MND – improving the care and support they receive now, while investing in the ground-breaking drug trials and research projects which give us all so much hope for the future.

As the coronavirus pandemic continues to unfold, the Association is adapting and responding decisively, ensuring people living with MND can access the help and support they need at this particularly challenging and worrying time. But with countless fundraising events cancelled, the Association stands to lose up to a third of its annual income, a situation which we continue to monitor closely. As ever, our extraordinary community has already risen to this unprecedented challenge, taking every opportunity to find increasingly creative ways to raise money on the Association’s behalf during lockdown – every penny really does count. In the face of the challenges that undoubtedly lie ahead, I know our community remains strong and resolute and as committed as ever to doing everything possible to support people living with MND both now and in the months and years to come. Thank you for your support.

We are so grateful for everything you have done already to help us, but in the months that lie ahead we will be relying on your support more than ever.

We will adapt to the changing environment to ensure services for people with MND remain a priority.

2019 Children’s hub launched. As early as 1993, the Association began the important task of supporting children and young people affected by MND by producing age-appropriate information. In 2019 the Association launched a new online resource, MND Buddies, which provides a safe place for children to learn about the disease through stories and play. By the end of the year, the site had received 7,381 page views. 22

Scrap 6 Months – campaign petition of 55,455 signatures handed into 10 Downing Street. Our Scrap 6 Months campaign launched in 2018, calling on the government to change the law regarding the Special Rules fast track process. During the 2019 General Election, more than 12,000 emails were sent, more than 800 candidates pledged their support and 77 are now sitting MPs. 23


Thank you “I am so grateful that the MND Association is there and continuing to work so hard for us.” “We all have a part to play in raising awareness of MND, particularly within the Government. People who are living with MND contribute and are valuable members of society – however long we have on this planet.” Sarah Ezekiel

We would like to thank our supporters for everything they have done during 2019 and continue to do in these difficult times. We are so grateful to all of our fundraisers, donors and supporters who have risen to the challenge and helped raise vital funds to enable us to keep our services going. With your support we will continue to offer the best support we can to everyone affected by this cruel, devastating disease while moving 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 mndassoc

Motor Neurone Disease Association Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Tel: 01604 611860 Email: fundraising@mndassociation.org www.mndassociation.org Registered charity no. 294354 © MND Association 2020

Profile for MND Association

Impact Report 2019  

Impact Report 2019  

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