IMPACT REPORT 2020
Motor neurone disease or MND for short. Three letters that change lives forever. Today and every day six people will be diagnosed with MND. Six more will die. There are no effective treatments, there is no cure. MND. Three letters with a huge impact.
F
OR far too long the story of MND has been the same.
back gardens, support meetings moved online, and volunteers picked up the phone to offer help.
Too many families have been torn apart, too many people have experienced the cruelty of losing loved ones before their time.
Thanks to your tremendous support, the services we offer to people living with and affected by MND were able to carry on.
We see the pain; we feel the heartbreak. We share the frustration.
Every day our community is pushing boundaries, building relationships, and collaborating with partners around the world as we move towards our vision of a world free from MND.
We are determined to redefine what it means to be diagnosed with MND and in 2020 when coronavirus meant the world stopped, that determination kept us going.
MND is relentless – and so are we.
Our community united in ways we have never seen before - researchers swapped their laboratories for laptops, runners swapped pavements for their
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‘At the start of the pandemic, we had one goal in mind – to provide people living with MND and their families with reassurance, information and support’
F
OR so many people in our community the past year has been extremely challenging.
Coronavirus meant that face to face appointments and home visits were cancelled, support groups and meetings postponed, precious moments with family and friends lost. And when our community needed our help, we answered the call immediately. Overnight, our teams left their desks and started working from home, using technology and systems we had already invested in to help us continue working seamlessly and without any interruption to our services. Our amazing volunteers made contact with everyone we know of who is living with MND across England, Wales and Northern Ireland, checking in to offer guidance and support, while a team of global MND experts was assembled to create information which was presented on an online hub. By December more than 16,000 people had accessed the hub and almost 1,000 people had viewed our regular ‘Ask the Experts’ sessions. Our campaigners fought hard to get people living with MND on the Clinically Extremely Vulnerable List with more than 5,000 campaigners getting involved. In Northern Ireland the success of the campaign meant that people living with MND were prioritised for Covid vaccinations, and were able to access specific Government
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‘I am so grateful for the support I have received’ Nilesh was diagnosed with MND during the second lockdown in October 2020, having experienced symptoms since January. He explained: “I was told I have a life expectancy of three years. It has been a huge shock for my whole family. “My symptoms mainly affect my speech and I have already had a PEG (Percutaneous Endoscopic Gastrostomy) fitted to help with my feeding.
advice and priority supermarket deliveries. While the campaign didn’t deliver the outcome we had hoped for in England and Wales, it was still one of the biggest campaigns we have run, raising awareness about how people living with MND could register themselves and enabling us to engage with countless new supporters.
“I have received a lot of information and support from the MND Association as well as from the team at my local hospice. I am so grateful for the help and support I have received.”
At the same time, branches and groups hosted support groups and meetings online to ensure our community stayed connected and our range of grants continued to give a helping hand to those most in need.
Nilesh, pictured with his family
240
1,500
volunteers redeployed to support people living with MND through Covid
people living with MND asked us to keep in touch with regular calls
When I was contacted by the Association, we had a long chat. It was so reassuring to know that help was at hand. The website is also excellent and answers all of my queries. Motor Neurone Disease Association Impact Report 2020 | 5
‘Parents with MND say that one of their biggest worries is the impact on their family. Our work helps them to face each day together’
‘I don’t know what I would have done without the Association’s support’ During lockdown in April 2020, Megan’s father John was diagnosed with MND. She explained: “He had been experiencing symptoms since January but received the diagnosis in April. “I knew very little about MND at that point – Stephen Hawking was our only point of reference.
S
UPPORTING families affected by MND continues to be one of our biggest priorities and this year we’ve taken a new approach to the help we offer.
It’s essential that families affected by MND have the information they need to talk to their children about the disease, that they feel empowered to make important decisions and that they have the tools they need to face the future together. With these clear goals in mind, we’ve partnered with leading children’s charity Barnardo’s to create a new counselling service. Thanks to funding from The James Milner Foundation, this new service has slashed waiting times from 18 months to just five days, meaning young people and their families can get the support they need much faster – an incredible achievement which will make a huge difference to those families who really need our help. At the same time, with the support of the Nick Smith Foundation, we’ve been helping children and young people create memory boxes and treasure boxes, teaching them about MND and helping them understand the changes going on around them through activities and play.
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72
£36,622
counselling sessions took place between November and December
worth of grants distributed to children and young people
“We were put in touch with the MND Association straight away and we were told that support would be available for myself and my sister Emily if we needed it. I had been feeling guilty about being away at university, so it was reassuring to know there were people available at the end of the phone if I needed to talk. I don’t know what I would have done without them.”
The Association has been with us from day one, supporting us and helping us get hold of the right equipment for Dad.
Megan pictured with her father, John, who is living with MND
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‘MND is not incurable, but it is underfunded’ F OR a long time MND was a disease few had heard of. Now, all that has changed.
Thanks to the sheer determination and courage of so many people affected by MND who have been willing to share their stories, the reality of MND has been brought to life for millions.
Every day, we’re working with journalists in television, radio, newspapers and online to help us spread the word about MND, using every precious second of airtime and every column inch they gift us to campaign, raise funds and improve the lives of everyone affected by this devastating disease. But our success in raising awareness of MND this year has been significantly boosted by the support and generosity of Rob Burrow MBE, his wife Lindsey and their family, who won the nation’s hearts with their openness, their honesty and their bravery.
The Towart family, who are affected by MND, and the Association’s Director of External Affairs, Chris James being interviewed on BBC Breakfast for Global MND Awareness Day 8 | Motor Neurone Disease Association Impact Report 2020
When former rugby league legend Rob Burrow was diagnosed in December 2019, he was determined to use his experience to help others. Since then, he has been a regular on the BBC Breakfast sofa, appearing alongside Scottish rugby legend Doddie Weir OBE and footballer Stephen Darby, who are also living with MND. Supported by his wife Lindsey, Rob appeared in a moving documentary, My Year With MND, which was watched by millions on prime-time BBC television.
Our work with Rob and his family has enabled us to break down doors and led to primetime coverage on the BBC and other broadcasters with hundreds of thousands of pounds raised by fans in his name.
Since then, a whole generation of new fundraisers has been inspired to get behind the MND community, while new volunteers have come forward to offer their support. To our Association, and the whole MND community, this kind of coverage, awareness and fundraising means the world. It is, quite simply, priceless.
The outpouring of love and support for Rob soon encouraged many others to get involved. While hundreds of supporters were inspired to take on challenges of their own, others were given the chance to jointly own a thoroughbred racehorse called Burrow Seven through the Burrow Seven Racing Club. With support from a local printer and the Leeds Rhinos Foundation, Rob’s young children also got involved by designing Christmas cards which immediately sold out on our online shop.
5,000+ the number of times the MND Association featured in national and local media including the BBC, ITV and Sky during 2020
117,661 people donated to Kevin Sinfield’s 7 in 7 Challenge
A lot of money has been raised and MND is well and truly known and talked about. Thanks to everyone. Rob Burrow MBE
His story also inspired close friend and former Leeds Rhino captain, Kevin Sinfield, to raise more than £2.5 million for Rob and the Association by completing seven gruelling marathons in seven days, a figure that continues to climb. This money will help us to deliver vital services to support people living with MND and accelerate important research projects. To top the year off, Rob was awarded an MBE in the Queen’s New Year Honours, in recognition of his services to rugby league and the MND community. Rob Burrow is joined on the pitch by his children at a testimonial match at Headingley Stadium in Leeds in January 2020 Motor Neurone Disease Association Impact Report 2020 | 9
‘The Think Tank has brought together some of the most innovative and creative companies in the world to focus on making life better for people with MND’
W
HEN it comes to helping people with MND live better lives for longer we’re constantly pushing the boundaries of what’s possible.
With new technology emerging all the time, things that would have seemed impossible just a few years ago – such as the ability to speak using communication aids that are programmed with an individual’s own voice – are now not only possible but being used by those affected by MND every day. The MND Association is right at the heart of these developments, building partnerships with global pioneers including Rolls Royce, Google and Dell through our Next Generation Think Tank. Together, we’re exploring and developing new ways to support,
and improve the quality of life of people living with MND, both now and in the future. This year, our work led to the development of Quips, a prototype computer software package which uses artificial intelligence (AI) to allow people who cannot speak to have a conversation using their voice and to keep their accent. The Association also offered its expertise and support to a Google initiative – Project Euphonia – which is training voice-activated technology to recognise and translate slurred speech. This is a big step forward for people living with MND who will now be able to use household devices such as Siri and Alexa to help them live independently for longer.
1,000 professionals trained to help people living with MND to bank their voice
Leslie was diagnosed with MND two and a half years ago and now experiences difficulties with his speech.
60,000 people have downloaded Google’s Look to Speak app, created with support from the Association’s Think Tank 10 | Motor Neurone Disease Association Impact Report 2020
‘It was really important for me to get involved in this exciting project’
This technology has enabled me to keep working. It is particularly useful when I am speaking to international colleagues as they can understand me much better.
The Association invited Leslie to get involved in the development of Project Euphonia – a project which is looking to train voice-activated equipment to recognise and translate slurred speech. He said: “I became involved with Project Euphonia through my speech and language therapist. My speech is dreadful, but people just about understand me. “There may, however, come a point when I am wholly dependent on it, so it was very important to me to get involved.” Motor Neurone Disease Association Impact Report 2020 | 11
‘We’re the driving force behind global MND research’ D ESPITE the world coming to a near standstill during 2020, and the many challenges we have faced along the way, the MND Association has continued to be the driving force behind MND research.
£14 million The value of the MND Association’s research portfolio at 31 December 2020
85 studies currently being funded including projects in France, Italy, Finland and Canada
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Over the past few months, our global MND research community has used its skills and expertise to respond with immense creativity and innovation to continue driving new discoveries. Even in lockdown, the extraordinary momentum we have seen in recent years has continued to gather pace, with researchers taking the fight against MND into their homes. Swapping their laboratories for laptops, many researchers seamlessly switched their focus on to analysing and publishing their research data, switching clinical trials and healthcare studies online, setting up new trials to start when the pandemic subsides and making new applications for funding. As the biggest charity funder of MND research in the United Kingdom, we have continued to fund projects including Project MINE, AMBROSIA and NECTAR. We are also supporting clinical trials to find new treatments, most notably the TUDCA-ALS trial of tauroursodeoxycholic acid and the MIROCALS trial of the drug Interleukin-2 as well as establishing the MAGNET platform trial through our partnership in the European TRICALS consortium. Our care centres are also being
set-up as key sites for recruitment into the MND SMART clinical trial.
Prior to the pandemic, the idea of hosting our annual Symposium exclusively online would have been unthinkable. Fast forward to December 2020 and the Association welcomed 1,800 of the world’s leading MND experts from 48 countries to our first virtual Symposium – a record-breaker in every sense. There were more people living with MND in attendance, more clinicians and researchers taking part, more research projects being discussed and more interest from pharmaceutical companies keen to be involved in forging partnerships.
We’re proud of the unique place we hold on the world stage as a trusted partner, using experience and expertise built up over four decades to set the agenda when it comes to finding new treatments and a cure for MND. In the months to come, we’ll be working alongside people living with MND, our colleagues at MND Scotland and the My Name’5 Doddie Foundation to encourage the Government to invest £50 million in MND Research over the next five years to allow us to take full advantage of the progress being made. We will win the fight against MND – and we will do it together.
Thanks to funding from the MND Association I’ve been able to progress my studies on the ER mitochondria axis in ALS, which is focused on C9orf72, the most common cause of familiar ALS (MND). Patricia Gomez-Suaga, Lady Edith Wolfson non-clinical fellow
Dr Brian Dickie, Director of Research Development
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‘We’re here to make sure no-one has to face MND on their own’ “Your call every week has been the one constant with all the things going on, thank you for the wonderful support.” “I just called the helpline and I spoke to a wonderful woman who really was so kind, and it made all the difference.” “I don’t know how people cope on their own, I know some people do; how they do it I have no idea but to have that back up is invaluable. Our Association visitor Barbara was my main support; she was second to none.” “The Leeds MND Care Centre works really well. It means all the different types of NHS support that I need are joined up and easy to access.” “I have found the virtual support meetings are helping me to cope a bit better. I pray every day for a cure to be found or perhaps something to slow it down.”
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I
n a year like no other, the MND Association has continued to support people living with and affected by MND, whether that’s in the form of a grant, access to world-class information or simply by offering someone to talk to. Thanks to the generous support of the whole MND community – funders, trusts, corporate donors, fundraisers, volunteers and campaigners, we’re making sure that no-one has to face the devastating effects of MND on their own.
£1.4 million
8,449
400
of support grants distributed to 2,479 people living with MND. Our grateful thanks to the My Name’5 Doddie Foundation and The Darby Rimmer Foundation who continue to support us with this vital work
calls and emails were made and sent to people living with MND between March and December
communication aids and 350 pieces of voice banking equipment loaned to people with MND
57,779
3,300
£1.5 million
pieces of information were downloaded and sent out to people living with MND and their families
people living with MND and their families were offered information and emotional support by our volunteers
claimed by people living with MND through the Association’s Welfare Benefits Advice Service
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‘It’s only possible thanks to you’
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T’S hard to find the words to express just how grateful we are to all of our amazing fundraisers, supporters, campaigners, celebrities, patrons, ambassadors and donors – a simple thank you just doesn’t seem enough. We’ve been blown away by your generosity, inspired by your ingenuity and often moved to tears by your spirit and the support you have shown to people living with MND. In a year that has challenged us all in ways we never thought possible, you showed us the way and gave everyone affected by MND hope for a brighter tomorrow. There are so many people to thank – too many to mention here – but we want to take this opportunity to show our appreciation and thank you anyway – from the bottom of our hearts.
Pictured (left to right) top row: Catherine completing her 26.2 garden laps running challenge, JJB completing his challenge for Mission 5000 Bottom row (left to right) Guinness World Record breakers Tandem WOW, Researcher at King’s College London
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Thank you to: The 4,182 members of our community who got involved in countless fundraising activities raising more than £3.3 million. The 816 people including 21 people with MND, and our patron Good Morning Britain presenter Charlotte Hawkins, who took part in our Mission 5000 event raising £279,000. Former Scottish Rugby International Doddie Weir OBE and the My Name’5 Doddie Foundation who have generously supported our care grants partnership since 2018. This year they donated an additional £70,000 towards our emergency pandemic response. The Stephen Hawking Foundation and the Hawking family for their support of the Annual Stephen Hawking Foundation MND Lecture and the Stephen Hawking Memorial Lecture and their generous support of the Association in countless other ways. Our patron Eddie Redmayne OBE for choosing the Association to benefit from a £50,000 donation from Marks and Spencer following a voiceover Eddie recorded for a M&S Food Christmas advert.
Everyone who donated to our Emergency Appeal, raising £204,000 to help us offer front line support to people with MND during the crisis. We would also like to thank our supporters who have generously given additional funds in response to the pandemic during the year. The Wolfson Foundation, which continued its generous commitment to MND research with donations of £375,000 towards the Lady Edith Wolfson NonClinical Fellowships and a flexible grant of £125,000 to invest in MND research. The Garfield Weston Foundation which provided a substantial grant of £75,000 towards our research programme. The Darby Rimmer Foundation which has established a new three-year care grants partnership with us to help provide vital support to people affected by MND. The Welsh Government and the Wales Council for Voluntary Action who provided £46,352 in emergency funding to support our work with people affected by MND in Wales. The Linbury Trust which made a further donation of £50,000 towards Project AMBRoSIA in memory of prima ballerina, Annette Page, who died from MND.
All the new supporters who added more than £200,000 to our regular giving income. This was boosted by the success of our new Cure Finders campaign. The Sinclair Charity which supported the Association’s research programme for the first time with a gift of £50,000. The Constance Travis Charitable Trust also continued their commitment to our care programme with a substantial gift of £50,000. The Alan Davidson Foundation for continuing their multi-year support for our care centre network and our wheelchair service and their additional grant in response to the pandemic. The Freshfield Foundation, which provided an additional grant to support the TONIC healthcare research project. Association for the Independence of the Disabled Limited (AID) for its continued support for research. The Betty Messenger Charitable Foundation and a family trust that wishes to remain anonymous, for their continued support for the MND Register.
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How we spent the money raised £4.60
Sources of income
‘Together, we’re fighting for change’
W
How we spent the money raised
E know that MND isn’t incurable, but it is underfunded – and we are determined for that to change.
In 2020, the Association joined forces with people living with MND, leading scientists and our partners at MND Scotland and the My Name’5 Doddie Foundation to launch a new campaign called #UnitedToEndMND.
raised for every pound spent directly on fundraising in 2020. When legacy income and costs are included, this rises to £6.69.
The aim of the campaign is simple. We want the Government to inject £50 million into MND research to enable us to form a virtual institute. The institute will provide the infrastructure needed for accelerating treatments for MND. It will bring together advances in both clinical and core science research projects which will put us within reach of effective new treatments for MND.
£11.7 million
was raised and donated by our incredible fundraisers, supporters and funders and a further £1.8 million was raised by our branches and groups. We are so grateful for your continued support.
£6 million
was donated in 2020 in the form of legacy gifts which continue to make a huge difference to our work. We are enormously grateful to the individuals who remembered the work of the Association in their Wills. These numbers are provisional and are subject to final approval by the Association’s Board of Trustees. For a full breakdown of our annual accounts please refer to our Annual Report. * This amount is less than planned due to the closure of laboratories and pausing of projects due to the pandemic.
Care and support (inc. by branches and groups)
£11.7M (59%)
£5.8M (37%)
Legacies
Research
£6.0M (30%)
£2.6M (17%)*
MND and our campaigns specifically were mentioned in Parliament a record number of times in 2020, including twice during Prime Minister’s Questions.
Branches and groups
Campaigning and raising awareness
£1.8M (9%)
£1.2M (8%)
Earned income
Volunteer development
Building political support for our campaigns, such as the Extremely Clinically Vulnerable campaign and Scrap 6 Months, plays a key role in achieving positive change for people with MND and their families.
£0.4M (2%)
£0.3M (2%)
Total Income for 2020: £19.9M
Fundraising
£2.7M (17%) Support costs
£3.0M (19%) Total Costs for 2020: £15.6M
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Meanwhile, support for the Association continues to grow among MPs and Peers in Parliament. The Association provides the Secretariat to the All-Party Parliamentary Group on MND and in 2020, support grew significantly with a 77% increase in membership and a 142% increase of MPs and Peers attending meetings.
Central fundraising
Since its launch in 2018, Scrap 6 Months has led to proposed changes to the welfare benefits system, which will see the rules around the terminal illness fast-track amended. Pictured (left to right) top row: Researchers at Oxford University Laboratory, social media posts to #GetMNDonTheList Bottom row (left to right) Scrap 6 Months petition hand-in at Downing Street, Jessica Morden MP, member of the APPG on MND.
This is an important development for people living with MND, who can only access the Special Rules for Terminal Illness fast-track if there is ‘a reasonable expectation of death within six months.’ People living with MND have already waited too long and we will continue to push the Government to change the law as a matter of urgency. Motor Neurone Disease Association Impact Report 2020 | 19
‘2021 and beyond: Setting out our plans for the future’
T
HE extraordinary efforts of the whole MND community led to an exceptional year for the Association which, in turn, has enabled us to accelerate our plans for the future. Greater awareness of MND, an increase in donations and an extremely generous legacy meant that the Association ended the year with a significant surplus giving us the opportunity to invest even more into the search for new treatments for MND. In the past ten years we have learnt more about MND than in the previous 100 years and we’re determined to capitalise on that extraordinary progress. That’s why, in 2021, the Association will be putting forward an additional £2 million from the 2020 surplus to spend on finding new drugs for MND, in addition to the £3.1 million we have already planned to spend on research this year and a further £1m of the surplus which will be invested in other important priorities.
While our investment in ground-breaking research continues, we are also determined to improve standards of care and help people with MND live better lives for longer. We’ll be working with our technology partners to take advantage of exciting developments in technology, continuing to help people affected by MND during the pandemic and developing the support we offer to children and young people. Despite our success – and the extraordinary efforts of our fundraisers and supporters – the situation we face in the coming months remains both volatile and uncertain. As we start to emerge from the pandemic, we anticipate a significant drop in our income, with many fundraising events still being postponed or cancelled. We will continue to monitor the situation closely. There remains much to be achieved and our ongoing care, research and campaigning work will cost at least £40 million over the next two years. The support of the whole MND community remains as important as ever.
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‘We’re determined to keep on doing what we do best, but your support is vital’ A message from our Chief Executive, Sally Light:
P
EOPLE living with MND, their families and loved ones are always at the very heart of everything we do, perhaps right now more than ever.
At the start of the pandemic last March, we only had one goal in mind – to be there for people living with MND and their families at an incredibly difficult and uncertain time. Extraordinary times called for an extraordinary response. With staff and volunteers forced to work from home, the Association rose to the challenge quickly, working together with our partners, to make sure we could stay in touch with people living with MND and support them in any way possible. As time has passed, we’ve used the experience to evolve, finding new ways to stay in touch, drive forward ground-breaking research, improve the services we offer to people living with MND and engage with our supporters all over the world.
In the past year you have done so much to support us, and we are so grateful for every penny you have donated or raised on our behalf. But as we begin to emerge from this crisis, into an uncertain world, your continued generosity and support will be crucial. We’re determined to keep on doing what we do best – improving the care and support we offer to people living with and affected by MND, while investing in the ground-breaking research which is taking us ever closer to the discovery of new treatments and the promise of a cure. All of this will only be possible with your support. People living with MND have waited too long.
The time is now.
Throughout, our amazing community – volunteers, fundraisers, donors, funders, supporters and campaigners – have been our anchor, standing firm and united, finding new ways to support us in the most challenging of circumstances.
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‘Together, we will win the fight against MND’
The MND Association asks all supporters to adhere to the latest Government guidelines in their area when taking part in Association-related activities. Any photos have been provided to us by the supporters concerned in the activity.
If you would like to support us, please visit www.mndassociation.org contact us on 01604 611860 or email us at enquiries@mndassociation.org 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 2021
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