Care and support
No‐one should have to face MND alone and, thanks to your help, the MND Association can make sure people living with MND have the help and support they need.
Our impact 2015/2016
The only charity in England, Wales and Northern Ireland focused on improving MND care, research and campaigning
FOR people living with MND every bucket collection, bake sale, skydive, gift, donation and grant offers hope.
Hope that their voices will continue to be heard and their individual needs recognised by society, hope that standards of care will continue to improve and that they are able to access the support they need whenever they need it. Hope that one day a cure will be found.
In the past year, our fundraisers, supporters, partners and volunteers have raised an amazing £8.7 million – money which is being spent now to improve the lives of those living with MND as well as funding vital research projects which bring us ever closer to new treatments and, ultimately, a cure.
But until that day comes, there is much more work we need to do.
This Impact Report explains how the money you have raised has been spent on behalf of people living with MND and details our plans for the future.
It shows how, with your continued generosity, we can work together to improve the lives of families across England, Wales and Northern Ireland – and work towards our vision of a world free from MND.
On behalf of everyone at the MND Association and all those who rely on our support, thank you.
No‐one should have to face MND alone and, thanks to your help, the MND Association can make sure people living with MND have the help and support they need.
The MND Association is
the leading provider of expert information on MND and our resources are used and trusted by people living with MND and health and social care professionals alike.
More than 3,400 people living with MND are now in contact with our 19 MND Care Centres, which are funded and developed by the Association in partnership with the NHS.
Just knowing that these centres are there, offering easy to access, timely and co‐ordinated care, can help to ease the burden felt by those affected by MND.
More importantly, research shows this multi‐disciplinary approach of providing the right care at the right time, can increase life expectancy.
In 2016, we open our 20th care centre in Brighton, allowing us to offer the best care possible to even more people living with this devastating disease.
All this work is only possible thanks to your support.
Until a cure is found, the MND Association is working to ensure that people living with MND have access to the care they need, when they need it.
In the past year, the MND Association has been able to provide 1,172 support grants, giving 813 people the chance to purchase essential equipment. We have also been able to loan out 745 pieces of equipment, with 1,453 people making use of at least one item.
The grants and equipment provided by the MND Association have helped people living with MND to maintain their independence.
“The generous donation you provided went towards the purchase of a lift which will help me enormously and enable me to stay in the family home, which means a great deal. Once again thanks to everyone at the Association and to all its supporters.”
Our MND Connect helpline, which achieved accreditation from the Helplines Partnership last year, provides the highest quality information to those with questions about motor neurone disease. In the past year, it responded to more than 7,319 requests for information and support.
Our accreditation means that anyone who uses the MND Association’s helpline can be assured their query will be dealt with by a trained professional, in the strictest confidence.
“I want to thank you for your kindness in pointing me to the right place. I have sourced the Apps you mentioned and they are already being used by my daughter and her family. Thank you so much for enabling me to shine a little light onto her dark pathway.”
A caller to MND Connect
The MND Association’s expert Care Service Navigators provide much needed support to 170 people living with MND in the East of England.
Our volunteers have helped put people in touch with the right support, have helped to trouble‐shoot problems and improved communication between professionals. Following the success of this pilot project, the Care Service Navigator role will be rolled out to other parts of England, Wales and Northern Ireland.
“To begin with you’re right at the beginning of your journey. Not only are you dealing with the shell shock but you suddenly find your whole life path has changed. There are so many things that you have to think about.”
The MND Association’s team of 300 volunteer Association Visitors (AVs) provides one‐to‐one support to families coping with MND in communities across England, Wales and Northern Ireland.
Our highly‐trained volunteers offer compassion, practical support and guidance through regular home visits, telephone calls, emails and texts. In a recent evaluation of our AV network, 92% of people living with MND who have an AV said they felt very well supported by them.
“We are more in control and less frightened because of her.”
Carer talking about his AV
Thanks to you, in the past year, the MND Association has issued 31,118 pieces of care information to people living with, or affected by, MND and a further 24,771 copies of publications were downloaded from our website.
We have published five new resources, revised and updated nine more and translated our Introduction to MND, and some of our information sheets, into 13 languages and Braille. This vital work has enabled us to connect with even more people living with MND in diverse communities across England, Wales and Northern Ireland.
More than 1,500 health and social care professionals and paid carers attended our training events and study days.
Working in partnership with the University of Northampton and the Royal College of General Practitioners, we have launched two free to access online MND courses to improve knowledge of the disease. To date more than 950 people have completed the courses.
Our partnership with the Royal College of Nursing led to them hosting three lectures attended by more than 190 health and social care professionals.
By working together we can ensure that more professionals have the information they need and improve the care they offer to people living with MND.
“I am treating a patient with progressive bulbar palsy and this lesson has been extremely useful in helping me to ensure I cover all aspects necessary to ensure best care.”A health and social care professional who completed our online module
A little over a decade ago there was only one known genetic cause of MND, but in 2006, a second key cause of familial MND was discovered by MND Association‐funded researchers in London, heralding the start of a new era of genetic research.
Since then, around 20 genetic causes of adult onset MND have been identified, with around a third of these discoveries involving researchers funded by the MND Association.
These advances have only been made possible thanks to the on‐going generosity and support of our volunteers, partners and friends.
In the past year, the legacy of the Ice Bucket Challenge has enabled us to embark on major new research programmes, giving us the potential to discover more about the disease, why it develops, as well as pursuing the search for new treatments.
At the end of the 2015‐16 financial year our research grant portfolio was £13.1 million, the largest in our history, and is being used to fund 82 research grants.
In 2015, we awarded 45 new research grants with a combined value of £7.5 million.
What’s more, following an audit by the Association of Medical Research Charities (AMRC) in 2015, the Association received certification of Best Practice in Peer Review. This certification is an important endorsement of our work and demonstrates that we are funding the right people to do the right research in the right way.
The MND Association
is at the forefront of
We are a leader in funding and promoting research projects which help us to understand the disease process and uncover
Each year, the MND Association organises the International Symposium on ALS*/MND, which brings together leading clinicians and researchers from across the world to discuss the latest findings in MND research. More than 800 delegates attended our most recent Symposium which was held in Florida in December.
By bringing researchers together we ensure that information is shared and that the brightest minds in MND research can exchange ideas and collaborate on key projects. This, in turn, will speed up our progress in the search for a cure.
“Phenomenal experience to learn of best practices and current research around the world, as well as an opportunity to dialogue with others.”
A delegate from the Association’s International Symposium on ALS/MND
*Amyotrophic lateral sclerosis – the most common form of MND
More than 1,000 samples from the MND Association’s DNA Bank are being used in Project MinE, the largest MND genetic research project in the world.
By cracking the genetic code behind MND, and discovering more about the causes, we have the potential to speed up diagnosis and unlock the door to new approaches to treatment.
“The support from the MND Association in the early stages was hugely influential in drawing collaborations from across the globe. We now have 16 countries wishing to collaborate in this exciting initiative, with more hopefully on the way.”
Prof Leonard van den Berg, Project MinE
More than 200 MND/ALS patients, recruited from clinics in England and France will participate in a trial of low dose Interleukin‐2, as part of the Modifying Immune Response and Outcomes in ALS (MIROCALS) trial, which is being supported by the Garfield Weston Foundation.
The trial will look at whether the drug slows the progress of the disease and will also enable us to understand more about the biology of MND.
“The extensive biomarker analysis of blood and cerebrospinal fluid at different timepoints will give us new understanding of the basic biology of ALS, how this correlates with the physical changes as the disease progresses and how this is affected by Interleukin‐2.”
Prof Nigel Leigh, lead clinician on MIROCALS
The MND Association launched a new initiative, funding four Non‐Clinical Fellowships, for laboratory‐based scientists, to complement our four Clinical Fellowships, for medically qualified clinicians. We are committed to nurturing the next generation of MND researchers.
The Fellowships allow us to attract, train and retain the very brightest and best young researchers, underlining our commitment to MND research both now and in the future.
“Being awarded a prestigious MND Association Research Fellowship, will allow me to continue to interact with patients, carers, family members and Association staff and discuss the impact of my work. As a scientist, I value this direct link as it is a constant reminder of why we are in the field of MND research.”
Dr Scott Allen, Research Fellow
One of the key roles of the MND Association is to make sure that people living with MND never feel alone.
The MND Association champions the rights of people with MND and ensures they have a voice.
Our network of 1,500 campaigners and 22 volunteer campaigns contacts, who are based across England, Wales and Northern Ireland, fight on behalf of people living with MND, their families and carers and make sure their voices are heard.
By working together, we make sure that the needs of people living with MND are addressed by key decision makers. They also continue to build relationships with those who are best placed to support our work and bring about change.
In June each year, the MND Association organises Awareness Month bringing the whole MND family together to raise awareness of the disease and encourage others to join our fight.
In 2015, our campaign Last Summer, focused on the stories of two people affected by MND and explained how the success of the Ice Bucket Challenge had changed their lives.
More than 1,000 posters were put up on transport networks across England, Wales and Northern Ireland, reaching a potential audience of 42 million people.
Our Awareness Month film was shown at 746 cinema screens for three weeks reaching over a million people.
Our coverage on social media reached a potential audience of 14.3 million.
The National Institute for Health and Care Excellence (NICE) Guideline on MND was published in February 2016 after four years of campaigning by the MND Association and our supporters. It is believed to be the rarest disease to have a NICE Guideline.
The guideline sets out what good care for people living with MND should look like and services in England are expected to take the guidance into account. The guideline is also expected to be adopted in Wales and Northern Ireland.
“My care has been pretty good so far but I hope the guideline will help others with MND whose care falls short of what they need. The guideline will help them understand what care they should be getting and to ask the right questions.”
Bob Keats, who is living with MND
Two Parliamentary receptions held last year attracted a large number of Parliamentarians and volunteers interested in supporting the MND Association and its work.
More people, who are in a position to support our mission and bring about change are now aware of MND and the needs of those who are living with it.
“I have learned so much from the MND Association and met so many wonderful people. Your charity is an example to others.”
Chris Evans MP
The Association is working hard to make sure that changes to the benefits system do not have a negative impact on people living with MND, their families and carers.
In the past year we have had a number of key successes, including campaigning for Personal Independence Payment (PIP) to be protected from future cuts. In addition, we fought hard on behalf of people living with MND, their families and carers to make sure that anyone receiving Carer’s Allowance would be exempt from the Government’s benefit cap.
“Every time someone affected by MND, their families and carers speaks to an MP a huge impact is made. Campaigning is that simple. Now we need more people joining us to keep making the same points time and again.”
Campaigns Contact Katy Styles
A local campaign by the MND Association involving testimony from people living with MND and their carers and support from politicians, led to funding for a specialist MND nurse to be reinstated in Bedfordshire.
People living with MND across the region stand to benefit from around £500,000 worth of specialist care and support over the next ten years as a result of our campaign.
“The difference the MND nurse made was tremendous. Someone who visited you at home, knew and understood the complexities of the disease, provided support and co‐ordinated things so that you got the care you needed, when you needed it.”
Alistair Varley, who is living with MND speaking at the hearing held at Central Bedfordshire Council
In 2015/16 we allocated 78p of every £1 to fund research, care and campaigning, 10p to fund support costs and 12p to support our fundraising.
For every £1 spent in the past year on central fundraising, £3.70 was raised in return, meaning that more than the total value of the original donation will end up funding our charitable objectives.
The amount spent on our programme in 2015 was higher than in 2014/15 thanks to the success of the Ice Bucket Challenge in 2014.
We are extremely grateful for the extraordinary support shown by all of our supporters who raised an incredible £8.7 million in 2015/16.
The gifts left to us in supporters’ wills represent a very important part of our income and contributed £4.4 million.
Without the unwavering support of our donors and supporters, none of the work we have done in the past year would have been possible.
By continuing to support us in the year ahead, you can help us to go further, reaching out to more people living with MND, their families and carers and enabling us to push the boundaries of MND research.
We would like to say a huge thank you to all of our fundraisers, donors and partners who have supported us over the past year. Your money has helped us to make a real difference to people living with MND, their families and carers.
The Association relies on the generosity and dedication of our partners and supporters to fund almost everything we do. To continue the fight against MND, we hope you will continue to support us. Whether as a donor, fundraiser, event organiser or volunteer you can play an important part in supporting our on‐going work.
The MND Association wants to make history by finding a cure for MND, but we can only do it with your help and support.
Support us and make the future better for people living with MND.
We will improve the knowledge of health and social care professionals, ensuring that people living with MND have access to better quality care.
We will continue to work with care providers to help people with MND access the support they need. We will also do more to support carers and ensure that children and young people are properly supported.
In the coming year, our focus on genetics will help us to unlock more secrets about MND, which in turn will help us understand more about its causes and how we might develop new treatments in the future.
We will also work to speed up the time it takes to diagnose MND and the ways we can predict how the disease will progress in each individual.
The number of laboratory and clinical scientists involved in MND research in the UK will also increase.
We will develop our MND Charter, our five‐point document which describes the care people living with MND should expect and use it to drive up standards of care in communities across England, Wales and Northern Ireland.
We will also use the NICE Guideline on MND to continue to engage with those best‐placed to affect real change.
We will continue to raise awareness to reduce the sense of isolation that can be an issue for people living with MND.