The difference we made together IMPACT AND ACHIEVEMENTS 2018
Our lives will never be the same… “Sam was the life and soul of the party, he was loved by everyone who knew him - at the school where he worked, at our church where he was a pastor and through his work as a Gospel DJ. The day before Sam’s birthday in 2012 we were told he had Progressive Bulbar Palsy (PBP), the rapid form of MND. The diagnosis was so final - our entire world stopped. By then Sam’s speech had already deteriorated, and he was really struggling. Watching him get worse affected us all, it was just heartbreaking. One day I spoke to our Association visitor. I was worried we didn’t have much time left and I wanted to make the most of every minute. Thanks to the MND Association we were able to go on holiday together, creating memories we will never forget. The Association also helped us by contributing towards the cost of a standing wheelchair, which made such a huge difference. We both cried when the chair finally came. Sam died suddenly in February. We had been married for 30 years and had been blessed with three lovely children. Our lives will never be the same without him.” Dena Cole, whose husband Sam died from MND 2
The difference you make Every day families across England, Wales and Northern Ireland are living with the devastating effects of MND. In 2018, thanks to your generous support, the MND Association continued to offer practical help and support, campaigned on a wide range of important issues, produced information in accessible formats and provided access to multidisciplinary care which is proven to improve both quality of life and life expectancy. But most importantly of all, the Association has offered hope for the future by investing in world-class research as we continue our fight for a world free from MND.
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Offering support during the darkest times SAM Tooze was just 26 when she was diagnosed with MND in 2017, six months after marrying her husband, Chris.
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As well as having to come to terms with her diagnosis, Sam and her husband found themselves having to make very difficult and emotional decisions about their future. She said: “Being diagnosed with MND has given me a completely different perspective on life – it has changed everything. I started seeing signs in December 2013 and was diagnosed in March 2017, it was a long journey. Just weeks after getting married we had to decide whether or not we wanted to have a baby and we decided not to. It was devastating. “The MND Association has been brilliant, particularly in providing support for my wonderful mum who really struggled with my diagnosis at first. In return, I want to do everything I can to support the Association and help others like me.” Prof Martin Turner, MND Consultant Neurologist “MND has made its mark on so many people, and we will make ours in research to beat it.”
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Fiona, Occupational Therapist “From being involved soon after diagnosis, the person with MND and their family get to know the therapists and can be linked into other services. We are able to help them throughout their MND journey.”
mes Jacqui, MND Connect helpline adviser “We’re here to listen, offer support and provide a wealth of information on all aspects of the disease. Every day, the team makes a real difference to people with MND, family members, health and social care professionals.”
People living with MND are at the very heart of everything we do The MND Association is here to make sure that people living with MND, just like Sam, have the care and support they need, when they need it. Our network of 89 branches and groups, which are run by volunteers, offer somewhere people living with MND, their families and carers can go to access the information they need in a friendly and supportive atmosphere, while 305 Association visitors (AVs) and other volunteers provide oneto-one support to 1,214 people affected by MND. The Association’s helpline, MND Connect, which achieved the Helpline Standard for the second time in 2018 is another valuable source of information. In 2018, the helpline answered 8,562 calls from people requesting information and support, made 3,042 call backs and responded to 2,061 emails.
Helen, Association visitor (AV) “Due to the nature of the disease, fast progression and lack of knowledge in the general public, people living with MND really need a friend to talk to and someone to point them in the right direction for help and support and I love being able to provide this.”
Of those who took part in our most recent satisfaction survey, 93% said that using MND Connect had helped them to resolve their issue. A further 72% said MND Connect had improved their confidence when it came to dealing with the effects of MND.
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£1.1m of support grants were provided to 1,801 people living with MND
1,529
people living with MND were provided with at least one piece of equipment to enable them to maintain their independence or help them to communicate
305
Association visitors (AVs) and other support volunteers provided a lifeline to 1,214 people living with MND
23,090 factsheets and publications were sent to people affected by MND in 2018 and 39,211 pieces of information were downloaded from our website.
10,300
pieces of specialist information for health and social care professionals were sent out during 2018 and almost 13,000 factsheets and publications were downloaded from our website.
2018
118
Last year we awarded grants to support voice-banking totalling £10,727. We also supported 231 people with information and advice from a trained voice banking volunteer.
“These past few days since the stairlift was installed have been an absolute joy, certainly in terms of bedtime and morning routines and I cannot thank you enough for the difference it has made to me.” Mark, who is living with MND.
“The Association’s guide for care workers is so great. I take it with me to care homes all the time.” Kate Barber, MND Co-ordinator. We are committed to raising awareness of MND among health and social care professionals (HSCPs) like Kate, in order to improve the quality of care people living with MND receive.
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How we provided care for people with MND in 2018 By working together with our partners and listening to the needs of those affected by MND, the Association continued to make a difference by providing direct support, funding specialist MND co-ordinators and other roles within the NHS and by influencing, informing and offering guidance to health and social care professionals. “One of the emotions I experienced after diagnosis was a feeling of loneliness and isolation. This issue was resolved in the form of Ted, an Association visitor, arriving. This kind, knowledgeable gentleman was able to answer my questions, ensure I had all the support that I needed and put my mind at ease over a number of issues. He was, in effect, my security blanket.� Roger, who is living with MND.
81%
of people who received our Living with MND guide felt it helped them to understand more about the disease and their on-going needs. Our award-winning care information includes practical advice about every aspect of the disease and is available in 13 languages and a range of formats.
350 health and social care
professionals (HSCPs) attended our respiratory masterclass programme in 2018 to develop their understanding and enable them to provide effective care to people with MND. Interviews carried out since the events demonstrated an increase in knowledge and understanding with 22 changes in practice recorded from interviewees.
630 people with MND were supported with communication aids and equipment last year. We provided 367 pieces of loaned equipment and 263 grants.
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Help and support is just a click or a call a When her mum Marie was diagnosed with MND in 2001, Nicola Marren, gave up work to care for her full-time.
Anita, local branch chair “Our branch runs a regular support group for carers to socialise and share experiences but also to provide information such as how they can access support if needed or extra benefits they might be entitled to.”
She said: “I knew I was the best person for the job, especially when my mum lost her speech. Caring for her was undoubtedly a privilege, but also very frustrating and lonely at times. I was a young woman in my early 20s, my friends were either off travelling, going on wild nights out or forging their careers. It was, in many ways, very isolating for me but the MND Association was fabulous at providing practical support.” The MND Association put Nicola in touch with a local carers’ organisation and provided a carer’s grant which allowed her to go on a much-needed break with her then boyfriend, Andy, who is now her husband. Marie sadly died in 2017, but Nicola and her family are determined to support others whose lives have been touched by MND. So far, they have raised more than £24,000 in Marie’s memory.
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all away “A young person’s grant for my son Rafael, bought him new clothes for sixth form and a mini break with cousins, away from caring for me.” Zabun, who is living with MND.
National care perspective, local care delivery When someone you care for is living with a terminal illness like MND, you need clear, accurate and sensitive information from people who understand what you are going through. You may also need help to cope with the additional financial burdens MND places on those already dealing with the effects of this devastating disease.
Heather, Regional Care Development Adviser (RCDA) “As the Association’s local contact, we bring together health and social care professionals, community volunteers and those affected by MND. We also work closely with families to ensure they have access to the best care, information and support possible.”
“David (welfare benefits adviser) continued to follow-up with me to ensure I received the correct benefit amount. I may have given up without his help. He also helped me to get a significant back payment, which I am grateful for.” Person living with MND.
In 2018, we provided 307 carers, like Nicola, with grants totalling £126,315. Our benefits advice service helped 1,285 people claim more than £2.3 million of benefits they were entitled to and we provided £1.1 million of support grants to 1,801 people living with MND. In addition, we launched a series of animated films, a recipe app to accompany our guide Eating and drinking with motor neurone disease and published a guide for coping with bereavement.
In 2018, we opened the North Midlands MND Care Network based at the Royal Stoke University Hospital. This was our 22nd care centre offering multidisciplinary care for people living with MND.
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We ensured those affected had the best local support possible Together with regional staff and local volunteers, the Association provided the link that ensured multidisciplinary care and support for people living with MND, and those closest to them, was made available locally.
3,828
people diagnosed with MND were supported across 22 Associationfunded Care Centres in England, Wales and Northern Ireland.
“Having the opportunity to do the dolphin swim with her daddy meant everything to Sophia. We have made memories that will last for ever and we can’t thank the Association enough for its support.” Dawn, whose husband Alan is living with MND.
223 grants totalling £54,000 “Enabling people affected by MND to quickly and efficiently access benefits they are entitled to really does help them to cope better and reduce the amount of worry they face.” John, Regional Delivery Manager for the East
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were awarded in 2018 to children and young people like Sophia to enable them to have a break or enjoy activities such as sports or music lessons, short breaks or days out.
307 carers’ grants were awarded
in 2018 worth £126,315, to enable carers to take a well-earned break from their caring duties. This could be in the form of a mini-break, a spa day or to take up a hobby.
1,600+ people regularly volunteered for the Association
59%
of carers spent more than 50 hours per week caring. That’s more than an average full-time job
42
teams and services have used our Transforming MND Care Audit to help improve the care they provide
89
branches and groups provided help and support to people living with MND, carers and bereaved carers. “The branch does incredible work - during my mum’s struggle, the Association helped my family so much and for that we will forever be grateful.” Zoe, whose mum died from MND.
3,800+ members posted onto the MND forum last
year. The forum is a safe, anonymous and supportive place for people affected by MND to come together and discuss topics only those close to the disease can understand.
“The MND online forum put my dad’s mind at ease with some of his worries. It also helped me when I was struggling – someone always replied, day or night, for which I am grateful.” Person affected by MND.
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Fighting for our vision of a world free from After being diagnosed with MND four years ago, Philip Brindle turned to the MND Association for help and support.
Prof Carolyn Young, MND Consultant Neurologist and co-ordinator of the Association-funded TONiC study
Since then, Philip has been determined to help others affected by MND by supporting the Association’s work on the MND Register and by helping to trial the HeadUp Collar, a project supported by the Association to help people with MND experiencing weakness in their neck. He explained: “Getting involved in research is of the utmost importance to me. Even though I know it may be of little help to me personally, I feel as though I may be able to help others in the future. Knowing that is a huge comfort.”
Prof Kevin Talbot, MND Research Consultant Neurologist “The MND Register is a partnership between scientists and people living with MND. Thank you to everyone who has joined the Register and everyone who will join in the future. Together we will learn more about your disease.”
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“We would like to take this opportunity to thank everyone living with MND who has already taken part in our study. Your contributions will make a big difference in identifying factors which affect quality of life.”
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He said: “A few months after being diagnosed, myself and my wife Carol went along to our local branch meeting for the first time. We were keen to speak to people who understood what we were going through and to share our experiences. It has been wonderful to find that sense of companionship that we needed so badly.”
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rom MND We’re united in our fight against MND
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We recognise that the fight against MND is a global one and in 2018 we continued to work closely with partners around the world to accelerate our progress. In 2018, the Association’s International Symposium on ALS/ MND, held in Scotland, attracted 1,247 of the world’s leading MND experts from 40 countries and we continue to work closely with researchers across the world on a number of important projects. There is a growing sense of optimism among MND researchers and significant steps forward are being taken in many areas, such as genetic research. In 2018, the Association continued to invest heavily in MND research and, by the end of the year, the value of our total research grants portfolio had reached £16,048,367 consisting of 90 research projects and grants.
Dr Agnes Nishimura, stem cell researcher “The MND Association funded my research for many years. Recently we created stem cell lines from people with MND using samples from the UK MND Collections, which are funded by the Association. This is an amazing initiative and an invaluable resource for years to come.”
Prof Gareth Miles, Neuroscientist “The MND Association continues to support impressive and innovative research projects that, importantly, tackle the question of what causes MND from many different angles.”
We remain indebted to the many volunteers living with MND, like Philip, who have taken part in our clinical research studies.
The MND Collections, a source of DNA and blood cells, continues to be an important resource for MND researchers. DNA from the MND Collections is part of a large worldwide collaboration between 20 countries that recently discovered a sixth gene that had never before been associated with MND.
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major International Young Investigator awards in MND research were both won by MND Association-funded researchers - Dr Russell McLaughlin and Dr Rickie Patani in 2018
MIROCALS is an innovative clinical trial of a drug for controlling neuro inflammation in people who are newly-diagnosed with MND, funded by the MND Association with support from The Garfield Weston Foundation and the J P Moulton Charitable Foundation. In 2018, there was an increase in the UK recruitment target of people with MND from 72 to 108 people with MND.
1,100+
people with MND had signed up to the MND Register by the end of 2018
“The moral and financial support of the MND Association has been a decisive factor in our success to date. Support and advocacy on behalf of drug trials such as the MIROCALS clinical trial is crucial to provide people with new effective treatments as soon as possible.” Prof Nigel Leigh, Consultant Neurologist and Director, Sussex MND Care and Research Network.
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new PhD Studentships and Lady Edith Wolfson Research Fellowships, were supported in 2018 in the fight to understand and find new treatments for MND. Of the 12 MRC/MND Association Fellowships awarded over the last decade, all but one have continued to develop their careers and expertise as MND clinician-scientists.
“My current research is at the cutting-edge of therapeutic development for MND and other paralysing conditions. It has been incredibly rewarding to get this far but there are many challenges to be overcome. This fellowship will enable me to continue this exciting research to identify a new treatment for MND and ultimately become an independent investigator in MND research.” Dr Barney Bryson, Lady Edith Wolfson Fellow, University College London. 14
How we continued our search for new treatments and a cure for MND Researchers whose work is funded by the Association, are fighting MND on every front. Key projects and clinical trials are aimed at increasing our understanding of what causes MND, paving the way for potential new treatments.
22,500
Project MiNE aims to map the DNA profiles of people as part of the world’s largest MND gene-hunting study. By the end of 2018, researchers funded by the Association had sequenced more than 2,000 genomes, almost 10% of the total worldwide target. So far, Project MiNE has found links between six new genes and MND.
“For me, getting involved in research is a ‘no-brainer’ as it may offer the chance of slowing the progression of MND. Being busy and thinking of others helps to take my mind off me – and that is a good thing.” Liz, who is living with MND.
“In an era of astounding molecular genetic discoveries in neurodegeneration research, we have never been better placed to push on and identify credible therapeutic targets for MND. So, it’s ever more important that scientists who regularly practise medicine are there at the forefront of fundamental research projects. The Association-funded Fellowship has given me the freedom to travel abroad, learn new skills and forge links between diverse labs to tackle the problem of MND in unique ways.” Dr Jemeen Sreedharan, Hon. Consultant Neurologist, King’s College London.
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Speaking out and raising awareness of MN Former professional footballer Len Johnrose was diagnosed with MND in March 2017. He says: “When I was first diagnosed, it was my wife Nadine and I against the world, but she really struggled. She withdrew completely, didn’t want to talk about it at all and we decided not to tell the kids. I found myself in a very dark place. I was sick of people not knowing what to say, not wanting to acknowledge what was happening.” “The whole process has been extremely difficult on the children, in particular, our son Patrick who has found it really difficult to deal with. Thanks to support from the MND Association I have been able to speak about what is happening to me and they have been brilliant in getting Patrick the support he needs.” People living with MND are at the very heart of everything we do while our fight for a world free from MND goes on. With your help we can continue to do everything we can to ensure those affected now have the best possible network of services from medical care to emotional support and practical help.
Jon Wellington, Councillor: “When my father was diagnosed with MND in 2007, my family had no understanding of the condition or where we could go for help. The local MND Association branch was excellent in helping us out.”
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Madeleine Moon MP: “I have a very personal reason for championing the rights of people with MND in Parliament and I believe change is achievable.” Chair of the All-Party Parliamentary Group (APPG) on MND. Madeleine Moon’s husband, Steve, died from MND in 2017.
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MND Jeremy Vine, Broadcaster: “The MND Association does brilliant work for people who have been struck down by one of the most debilitating illnesses ever known. I am absolutely delighted to do what little I can to help them understand that we are all rooting for them, whether or not we have directly been touched by the disease. Everyone is dreaming of a cure.” Patron of the London and West Middlesex Branch
Amplifying our voice - campaigning and raising awareness about MND In 2018, together with our network of more than 4,000 committed local campaigners, we actively campaigned and lobbied the Government in Westminster, the Welsh Assembly, the Northern Ireland Executive and local councils, to ensure the needs of people affected by MND were being met. And to maximise our voice and extend our reach, we campaigned in coalition with other charities, through the Neurological Alliance, the Care and Support Alliance, the Association of Medical Research Charities, with MND Scotland and others. Our Scrap 6 Months campaign was launched on 21 June, Global MND Awareness Day, calling for a change in the definition of terminal illness for the purpose of accessing fast-track benefits. By the end of the year, more than 10,000 people had signed our online petition. We continue to listen to people living with MND about their need for accessible housing and adaptations and more than 800 people took part in our engagement survey last summer. We have been incredibly grateful for the continuing support of The Princess Royal during 2018, Her Royal Highness’s 10th year as the Association’s Royal Patron. It was a very busy 12 months, with Her Royal Highness attending six events on our behalf.
“As one of the Campaigns Contacts for the MND Association, we can see the impact our collective action has on national issues and how we can work together to win over those who make decisions.” Greg, Campaigns Contact
Thanks to the work of our campaigners in 2018, the Department for Work and Pensions (DWP) announced it would scrap reassessments for people living with MND who claim the highest rate of Personal Independence Payments (PIP).
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How we campaigned and raised awareness of MND Together with our amazing local campaigners and supporters, we have been able to make a difference to the lives of people with MND, their families and carers. Here are some of our highlights from 2018:
10,000
people signed our online petition to Scrap 6 months, which seeks to redefine terminal illness when accessing fast-track benefits by removing legislation around ‘reasonable expectation of death within six months’.
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 served.
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1,668,742
Our website received total page views in 2018. It is constantly evolving and being updated to make it as relevant as possible to users.
Scrap 6 Months
launched on Global MND Awareness Day, 21 June
30
Campaigns contacts were recruited to support local campaigners and supporters
70
councils signed up to the MND Charter, a five-point plan setting out what good care for people with MND looks like
8,600 members regularly received our quarterly magazine Thumb Print
“Thumb Print shows me that I’m not alone.”
After active campaigning by the Association, the Department for Work and Pensions (DWP) announced it would introduce ongoing awards for Personal Independence Payments (PIP) claimants with progressive conditions on the highest rates of benefits, with a light touch review at the end of ten years. This scraps reassessments for people with MND on the highest rates of PIP and was a major campaigning achievement in 2018.
People with MND across North Wales have continued to benefit from the success of the region’s MND Care Coordination Service, launched by the Association in 2017. The service is now run by the Betsi Cadwaladr University Health Board.
Michael Thompson, living with MND.
As a direct result of our work, the Warwickshire North Care Commissioning Group (CCG) now funds a new part-time MND Care Co-ordinator.
“Motor neurone disease is a devastating disease and Cardiff Council is proud to adopt the MND Charter in partnership with Cardiff and Vale University Health Board. It is essential that more people are made aware of the needs of those living with MND and that we ensure their quality of life is maximised.” Councillor Huw Thomas, Leader of Cardiff Council.
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How we spent your donations
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.
out of every £1 raised was spent on funding our work in research, care and campaigning, 15p to fund support costs within the Association, for example, finance, information systems and human resources and 17p on fundraising costs to generate our income.
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.
£3.58
None of the work we do to support people affected by MND would be possible without the kindness and generosity of our fundraisers, donors, corporates, trusts and other supporters – and we are incredibly grateful.
SOURCES OF INCOME
HOW WE SPENT YOUR DONATIONS IN 2018
was raised for every £1 spent directly on central fundraising in 2018. When central legacy income and expenditure is included, this rises to £5.17.
£9.9 million
million was raised by our incredible fundraisers and supporters in 2018 and our branches and groups raised a further £2.2 million. We would like to thank everyone for all that they have done this year. Central fundraising
(£) million £9.9
(£) million
Care and support
£6.6
Legacies £5.2
Research
£3.6
Branches and Groups
£2.2
Raising funds
£3.2
Earned income
£1.4
Support costs
£2.8
Campaigning and raising awareness
£1.6
Volunteer development
£0.9
TOTAL £18.7
TOTAL £18.7 20
£5.2 million
million 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.
We would like to thank… Everyone who is living with or affected by MND, including those who generously support our work, either by volunteering, campaigning, raising or donating money, sharing their personal experiences to help raise funds and awareness or by joining our growing online community on social media. Their courage and dedication continue to inspire our work every day. Doddie Weir and the My Name’5 Doddie Foundation for their generous two-year partnership to help fund elements of our Care Support Grants Programme.
Investec who created an extraordinary Charity of the Year partnership with us for 201819 with the aim of raising £100,000 for research.
The Wolfson Foundation who pledged £750,000 over two years towards The Lady Edith Wolfson Fellowship Programme. This exceptional donation marks more than three decades of support from the Wolfson Foundation and represents their largest single donation to the Association.
Our fantastic MND community who rose to the challenge raising more than £4.1m to support people affected by MND.
The Hawking family and The Stephen Hawking Foundation for their continuing support, including the generous donation of £109,200 from the sale of one of Professor Stephen Hawking’s iconic wheelchairs.
The London City Swim Foundation sponsored by Intertrust who held their second open water swimming event at the Royal Victoria Docks. More than 330 swimmers including five people with MND took part in the event, raising more than £140,000 to support the Research Project AMBRoSIA.
The Broad family and friends who organised the biggest and most successful fundraising ball in our history, generating a net profit of £200,000 for our care and research programmes. The Alan Davidson Foundation who donated £60,000 as a result of the successful HD5K Run in Hyde Park in May and a further grant of £106,000 to support our care programme. Sadly, Alan died from MND in August 2018.
All our members, including many people living with MND, who are the driving force behind our work.
Everyone who took part in our mass participation event, Walk to d’Feet. The event had a recordbreaking year with overall income of £119,000 generated from 196 sponsored walks. Everyone who remembered the Association in their Will, contributing £5.2 million.
Everyone who set up a Fightback Fund or Tribute Fund raising £1.3m to fund the Association’s work. The J P Moulton Charitable Foundation who supported the Association for the first time, donating £108,000 towards the MIROCALS clinical drug trial. City v MND: David Setters’ Trophy Cricket event delivered another memorable day’s Cricket in the City and raised vital funds for our Research Fellowship Programme. The Freshfield Foundation, The William and Frank Brake Family Trusts and the Bruce Wake Charitable Trust for their long-term support of the Association across many projects. Those who supported our Lifeline Appeal, which was our most successful appeal in 2018 raising more than £168,000. The Linbury Trust who pledged a substantial donation of £200,000 in memory of the ballerina Annette Page who died from MND in 2017. The donation will go towards the Association’s Research Project AMBRoSIA. 21
But the fight is not over. There is still much more for us to do in 2019‌ Improving care and support We will work with people affected by MND and external organisations to progress technological innovation that will help people living with MND in their daily lives. We will continue to work with our care centres and other NHS services to compare their services against the standards set in the NICE guideline on MND and identify any areas for improvement. We will work with our care centres and networks to increase recruitment to the MND Register for England, Wales and Northern Ireland. We will be recruiting volunteers to our carers’ champions trial. These champions will provide information about support for carers and bereaved carers of people with MND in their local area. We will pilot several new support volunteer roles that provide direct support to people affected by MND. We will be helping our volunteers to establish support groups for people living with MND, carers and bereaved carers.
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A new web hub for children aged between four and 10 will be launched and we will continue to develop resources for children including an information guide for eight to 10-year-olds and an animated video for use in schools.
Research We will continue to support centres to achieve their recruitment target to the MIROCALS clinical drug trial, in addition to facilitating recruitment of UK participants to a new European trial. In collaboration with MND Australia, we will facilitate international collaboration in MND research and clinical management through hosting the 30th International Symposium on ALS/MND in Perth, Australia in December 2019. We will continue to fund new and innovative studies in fundamental science, clinical science and healthcare research, with a proportion of our funding targeted to joint collaborations with partner organisations, in order to maximise our funding impact.
We will develop our web and social media activities about our research projects to provide timely, relevant and accurate information to our members and supporters.
Campaigning and raising awareness We will launch a new campaign focusing on improving access to adapted and accessible homes for people with MND. As part of our Reaching Out, Equality Diversity and Inclusion strategy we will be working with our volunteers to explore how they can reach out to new communities and supporters. We will use our 40th anniversary to demonstrate progress in research and caring for people with MND and to look to the future. We will launch a new MND Association website enabling us to provide our information in a more accessible format making it easier for supporters and volunteers to engage with the Association.
A message from our Chief Executive Each day across England, Wales and Northern Ireland, six people are diagnosed with MND, a devastating, progressive disease which affects the ability to walk, talk and eventually breathe. As symptoms progress, people living with MND may be forced to make difficult decisions about whether to give up work; partners or loved ones may become carers and children and young people may find it difficult to understand what is going on around them. The MND Association was formed in 1979 to help people living with MND and their loved ones, providing the best support it can while investing in the world-class research projects which we believe will bring us closer to new treatments and the discovery of a cure. Thanks to your incredible support we have continued to take great steps forward during 2018. We are helping people with MND to live better for longer through co-ordinated
multidisciplinary care, raising awareness of the disease at a national and international level and working alongside local councils and MPs in Westminster to campaign for their rights. At the same time, in the UK and beyond, our partners continue to make important advances in MND research. But there is still much more which needs to be done and still many more people in communities across England, Wales and Northern Ireland who need our care and support. With your help we can achieve even more, with your help we can win the fight against MND.
Sally Light, CEO Motor Neurone Disease Association
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Thank you We would like to thank our supporters for everything they have done in the past year. With your continued support we will 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
facebook.com/mndassociation @mndassoc
Motor Neurone Disease Association PO Box 246 Northampton NNl 2PR Tel: 01604 611860 Email: fundraising@mndassociation.org www.mndassociation.org Registered charity no. 294354 Š MND Association 2019