DIFFERENCE You make the - Impact Report 2019 - MND Association
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You make the DIFFERENCE Impact Report 2019
“I know how You’ve supported us from the beginning
lucky we are to
have the best care “We started the Association because we knew we needed support. We
so close to home” 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
The care centre was officially opened by our Royal Patron,
which leaves people unable to move, talk, swallow and even breathe.
HRH The Princess Royal, in June 2019 and Margaret, who
speaks using a communication aid, has been attending From small beginnings, the Association has grown into a diverse
regular appointments there ever since. community of almost 10,000 members including people living with MND,
their families and carers, loyal fundraisers, supporters and donors, passionate
She explained: “Before the care centre opened, I had to
campaigners, researchers, clinical partners and dedicated volunteers.
travel to Stoke-on-Trent, 22 miles away. Now I attend
a regular clinic in Stafford which is just nine miles Within the pages of this report you will be able to read more about
or 20 minutes from our home. The MND specialists the difference you have made to the lives of all those affected by MND
there provide care with the greatest understanding, during 2019. And, as we look ahead to the future, you will be able to
compassion and gentle humour and my family and find out more about the plans we are making as we continue to fight
I know we can always speak to someone if we need together for a world free from MND.
to. Combined clinics also mean I only attend one
appointment.
“Together, the MND Association and medical team Making plans for the future after coronavirus: Page 22
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 Professor Stephen Hawking becomes Patients’ Patron.
the MND Association later the same year - was Professor Hawking worked closely with the Association, raising
established by a group of families affected by MND. awareness of MND around the world. Following his death in
With little information, co-ordinated care or support 2018, the Association has continued to work closely with his
available, the group was determined to fill the void and start family and The Stephen Hawking Foundation. In 2018 the family
funding research. Today, the Association supports almost kindly donated £109,000 from the sale of his iconic wheelchair
4,000 people living with MND, their families and carers each to the Association in his memory.
year. In 2019, our research portfolio totalled £14.5 million.
2 3
You help us to offer hope when it is needed the most…
Mina with husband Ashwin.
Below left: Ashwin who was just
“Caring for Ashwin 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.
was often very
57 when he was diagnosed with
MND. Below right: Ashwin with Our network of 392 Association visitors (AVs) fulfil an essential
Remal his eldest son.
difficult, but we were
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
very grateful to the volunteer AVs are there simply to listen – offering confidential,
emotional support at a time when it is needed most.
Association for all Information is also available from the Association’s dedicated
helpline MND Connect. During 2019, our team of volunteers and staff
their support .”
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
Mina first became worried about her husband,
£103,759. We also helped nearly 1,000 people claim more than £2 million
Ashwin, during the summer of 2014. After a series of
in eligible benefits through our welfare benefits advice service.
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
“My parents ran a shop and “Our Association visitor,
none of it was his fault.”
were really well known in Maimie, pictured, was a
Mina explained how the Association helped to the community and so Mum, friendly face at the start of
improve Ashwin’s quality of life and supported Mina pictured, has lots of visitors our problems with MND,
in the home. The Lightwriter but she has become more
at the same time by helping to pay for a wet room so
makes it possible for her to be part than that. She is somewhere
she could bathe Ashwin downstairs. of the conversation, rather than just between a friend and a
She said: “MND really is the most terrible disease and listening to what they say. It’s really important and makes volunteer. She was able to help us
such a difference. She lost her voice quickly and later her to access grants from the Association
nobody can understand just how awful it is until they
fine motor skills too and was unable to hold a pen, so the and we are grateful for these.”
have experienced it themselves. I really don’t know Lightwriter has been a lifeline.” Michael and Rachel
what we would have done without the support of the Jay
MND Association.
“Ashwin died in 2018. He was the very heart of our
family and we still can’t believe he has gone.”
1980 1981 1982
The Association funds its first full-time research The Association starts to loan out equipment. First study day for health and social care professionals The Association’s first Research Fellow
project at Charing Cross Hospital, London. Unable to access vital equipment from their local (HSCPs) is held in Oxford. is appointed.
The grant was awarded to Dr Frank Clifford Rose, authority, the Association stepped in to help people The study day helped HSCPs understand all aspects of MND care. Patrick Doherty was appointed to study the
Consultant Neurologist at Charing Cross Hospital, London with MND. In 2019, 1,350 people with MND had Today, the Association offers a comprehensive programme of differences between healthy motor neurones
and in 1983, the results of his study were published. Dr at least one piece of equipment on loan through training and support to help improve the care of people with MND. and those affected by MND.
Clifford Rose later became a patron of the MND Association the Association, helping them to maintain their This includes professional access to the helpline MND Connect, care
and, in 2003, co-wrote a book for people affected by MND. independence and improve their quality of life. literature and opportunities to take part in masterclasses.
4 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 300
burden of MND. 392 HSCPs attending
masterclasses
Association visitors like
Nigel, pictured, who provide
important one-to-one support
2,193,881
page views were recorded on our website from
those accessing our services and information
£1,260,764
worth of Support Grants helping
1,718 people living with MND
89
branches
and groups
22
care centres we fund
3,931 £2,097,133
people living with MND were supported at was claimed through the
one of 22 care centres. In our 2019 Improving
MND Care survey, 90% of those who attended
9,950 2,307
Association’s welfare benefits
advice service
members who inspire
a care centre described the service they subscribers signed up to the HSCP
our work and drive the
received as ‘good’ or ‘excellent’ newsletter by the end of the year
Association forward
1984 1986 1988 1990
After actor David Niven died from MND in 1983, a celebrity The number of MND Association branches Jim Tew, a former Chair of the Association, The first International Symposium research
launch of the David Niven Appeal at BAFTA, London raised more hits 40. receives an MBE. conference of MND/ALS Societies was held in
than £170,000. Having started with just three branches in 1979, Jim was diagnosed with MND after a career in Birmingham attracting 50 researchers.
This appeal paved the way for celebrities to help raise awareness and today the Association has 89 branches and groups research. When the Association started to fund The Association’s International Symposium on ALS/MND now
funds. Today, our supporters include broadcasters Zoe Ball, Matthew which meet regularly. As well as offering an research studentships in 1998, one was named brings together more than 1,000 of the world’s leading experts
Bannister, Charlotte Hawkins and Jeremy Vine; actors Gina Bellman, Benedict important point of contact for people living with The Jim Tew Studentship, to recognise his great in MND research to talk about their work and develop working
Cumberbatch CBE and Lily James and sports personalities Chris Broad, Stuart MND in their community, they also campaign and contribution to the work of the Association, and relationships. By working alongside colleagues around
Broad MBE, Rob Burrow, Stephen Darby, Len Johnrose and Doddie Weir OBE. raise money to support the Association’s work. particularly his support for research. the world, we will learn more and increase our chances of
developing new treatments and a cure.
6 7
You help us to give families the support they need…
“We all had fun and Every day, families are living with the
devastating effects of MND.
forgot about our As their loved ones come to terms with their
diagnosis, we know that children and young people
worries for a while’”
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
Twelve-year-old Penni-May has never known life able to do even more to help them.
without MND. As well as launching a new storybook called Why are
Her dad, James, was diagnosed with the disease long things changing? featuring three stories about MND,
before she was born, and she has grown up watching him the Association has developed a web hub, MND Buddies,
cope as MND slowly takes over his whole body. providing a safe place for young children to learn more about
MND through games and colourful activities.
As life has become more challenging, the MND
Association has been able to offer James, Penni-May and We brought families together by organising special events such
her mum Sandra the help and information they need to as the Big Picnic in Manchester which was attended by 135 people
not only make sense of what is happening to them, including 60 children. And we were able to help make life a little bit easier
but also to enjoy the time they have together. They by offering 192 grants to children and young people worth more than £45,000 –
have received grants to help provide a mobility helping to pay for everything from short breaks to drama lessons.
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
“We are delighted to “The book written for children
up to handle what MND can do report Rory, pictured, has Why are things changing?
and my mum and dad like me to safely returned from his explains in simple terms
talk to them about it. The MND Scottish island-hopping that things are going to
Association has helped us a lot adventure with his change…but there will be
and has organised trips and activities Granny and Grandpa. He someone to help, or a way
had a truly memorable of doing things that you can
for children who have family members
time with lots of memories all join in with.”
with MND. We all went to the Big Picnic in made. We would like to
Manchester last summer – everyone had fun thank the MND Association for
and forgot about their worries for a while.” their contribution to Rory’s grant.”
Ned and Heather
Penni-May’s dad was diagnosed with MND five
years before she was born. Left: recent photos with
mum Helen and dad James.
1990 1992 1993
Our MND Connect helpline is launched. The Association helps establish the International The Association conducts its first MND patients’ survey. Our first MND Care and Research Centre was
What started as an informal listening service for people Alliance of ALS/MND Associations. The first survey, completed by 22 people affected by MND, opened at King’s College Hospital, London.
living with and affected by MND, has now grown into From just 20 founding organisations in 1992, this global network covered topics such as health and social care and was designed Offering multi-disciplinary care - which is proven to
the Association’s helpline, MND Connect. Each year, has now grown to more than 50, representing 40 countries. The to help us listen to our members. Our surveys have led to many increase life expectancy and improve quality of life –
our highly-trained advisers and volunteers respond Alliance is an international community for ALS/MND Associations initiatives being launched including the Association’s welfare the opening of the Association’s first care centre was
to more than 10,000 requests for information and around the world, promoting research and sharing knowledge. It benefits advice service in 2017. In 2019, the service helped 921 a significant milestone. The Association now has 22
practical and emotional support by phone and email. also organises Global MND Awareness Day each year on June 21. people affected by MND identify more than £2 million of benefits care centres and care networks reducing the need for
which they were eligible to claim. multiple appointments and stressful journeys.
8 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 685
in their own way. As well as providing those resources, the Association makes sure that people with people who are living with MND like
MND have access to the equipment they need to help them live the best life possible. Kaysa, pictured, received support to access
51,129 communications aids and voice banking
factsheets and
“It was good to meet other people publications were
downloaded from
living with MND at the Big Picnic in
our website and
a relaxed and informal situation.”
23,811 publications
sent to people
affected by MND
1,484
volunteers work
12,444 tirelessly to support
our work. In June, the
publications were
Association marked
downloaded from our
its 40th anniversary
website by health and
by inviting 250 of
social care professionals
our volunteers and
supporters to an event
at Boughton House in
Northamptonshire. 7,644
£103,759
calls were
answered by
our helpline provided in grants to
7,381 MND Connect 265 carers
unique page views of
our MND Buddies web
hub between its launch
2,275
people registered
in August and December
to use the online
913 care forum
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 1996 1997 1999
First book written for young people affected by MND. Riluzole was licensed for the treatment of MND. Spring conferences bring local information to The internet opens up global possibilities for the MND
When your parent has motor neurone disease was the first book In 1993 people with MND in the UK took part in an people with MND. Association.
written about MND for teenagers and was compiled with the international trial of the drug riluzole, that led to it Our Regional Focus events provide people with an In 1999, the MND Association’s first website was launched. 20 years
help of a group of young people with experience of MND. We becoming the world’s first licensed drug for the treatment opportunity to meet the Association’s team and find out later, the Association worked alongside people living with MND, HSCPs
still use the same peer group review procedure to test and of MND. In 2019, the Association was involved in the more about the work we are doing in their area. They are and Association supporters to develop a new website, designed to
inform all new publications for children and young people TUDCA-ALS trial, looking at repurposing a drug as a held four times a year in locations across England, Wales and ensure people affected by MND can find the information they need
including So what is MND anyway? which is available in print treatment for MND. We are also a partner in the TRICALS Northern Ireland to give members of the MND community quickly and efficiently. In 2019, our website recorded 2,193,881 page
and a downloadable PDF. consortium which is looking to test more than one drug a chance to come together and get the support they need. views. We continue to embrace new and emerging technologies to
within the same trial. In 2019, Regional Focus events attracted 305 people. keep the MND community connected.
10 11
You help us to campaign for real change…
“Financially, it has MND often places an unimaginable financial
burden on families at one of the hardest
been difficult. We are
and most stressful times of their lives. The
Association is determined to support them.
very grateful for the
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) fast-
Association’s support” track 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.
For Josie and her family, MND has been life A review of how well the benefits system works for
changing. the terminally ill was subsequently announced by
the former Secretary of State for Work and Pensions,
In 2017, her husband Mark was diagnosed with MND, Amber Rudd.
18 months after first experiencing symptoms. Since
then, his mobility has continued to deteriorate leading The Association is also supporting people affected by MND
to a reduction in his independence. when it comes to improving access to housing adaptations
and accessible housing. The Act to Adapt report published by the
Josie is now Mark’s carer, having left her job to look Association in 2019 concluded that people affected by MND currently face
after him full-time. enormous difficulties, from the time it takes to go through the process to the
She said: “Financially, it has been very difficult, and we high costs involved.
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.
“I have had so much “I am fortunate to have a relatively
“So much additional stress was put upon us at a support from a lot of slowly progressing form of MND
time when we were already dealing with one of people, including the and so have time to advocate
the most stressful situations we have known. MND Association, and on behalf of those whose
Thankfully, the Association gave us a grant am positive about my progression is much quicker. Half
life but the last year or of people die within two years
towards the cost of a wet room which has made
so battling the system of diagnosis – with that type of
such a huge difference. It’s reassuring to know to get the benefits I was nuclear bomb dropping on your
that support is there.” owed has been very hard. family, especially if you have young
It shouldn’t be like that.” children, you really shouldn’t have to
Martin waste precious time fighting the system.”
David, volunteer campaigner
Left: Josie and husband Mark who
was diagnosed with MND in 2017
2001 2002 2003 2006
Rex Cheetham receives a silver floral medal at the The All-Party Parliamentary Group (APPG) for The national MND DNA Bank and Clinical Database Healthcare research funded by the Association
Chelsea Flower Show for his garden design Memories MND is formed. is launched. to determine the benefits of non-invasive
of Rex. This cross-party group meets in Parliament to discuss In 2003, the Association, together with individuals, donors, ventilation (NIV).
We take every opportunity to talk about MND, whether that matters related to MND. Over the years they have funders and Association branches, created a national DNA Bank By 2010, this project proved that NIV helped people
be on TV, national newspapers or online. Coverage of the 2019 produced a series of reports which seek to change for MND. In 2015, further funding enabled Professor Chris Shaw with MND live longer and enjoy an improved quality
Chelsea Flower Show, which saw our founder member Martin policy for people with MND. The 2015 APPG’s report on to create a new library of cell lines. The combined resource of life. Thanks to the hard work of our campaigners, NIV
Anderson MBE and Sue Haywood from Sue Haywood Garden the lack of communication aids for people with MND, is now known as the MND Collections and is invaluable is routinely offered to people with MND, as stipulated
Design Ltd win a gold medal, led to articles in magazines and on Condemned to Silence, spearheaded a major shift in the to researchers around the world. In November 2019, the in the National Institute for Health and Care Excellence
TV. In 2019, we reached an estimated audience of seven million. way that Eyegaze could be provided by NHS England. Association received the UK Biobank of the Year Award. (NICE) guideline on MND.
12 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
people sent emails to
Parliamentary candidates
during the 2019 General
making the voices of people with MND heard
80
Election campaign MPs and Peers attended MND
events in Parliament during 2019
93
councils had
adopted the
MND Charter by
7,391
the end of 2019
campaign network
members
55,455 850
people signed our Scrap 6 Months petition people, like Ciara, pictured with her husband Joe and
their family, shared their experiences of housing
adaptations, strengthening our report Act to Adapt
2007 2008 2009 2010
A pledge of £1 million, is made in memory HRH The Princess Royal becomes Royal Patron of the The discovery of mutations in the FUS gene as a cause of The Association’s online forum is launched.
of Lady Edith Wolfson who died from MND, MND Association. inherited MND is published by an international team of The forum provides an important and safe space for
to fund Lady Edith Wolfson Clinical Research The Princess was already involved with MND Scotland when scientists. people affected by MND to share their concerns and
Fellowships. she agreed to support the Association’s work in England, Wales The team included researchers at King’s College London, with some chat with others going through similar experiences.
The Lady Edith Wolfson Fellowship programme includes and Northern Ireland. Her Royal Highness took on her role as funding provided by the MND Association. Although mutations in The ‘Ask MND Connect’ option allows people to
clinical research grants jointly funded by the Medical our Royal Patron for an initial period of three years and has very the FUS gene only cause a small number of cases of MND, further speak directly with our trained support staff as
Research Council and non-clinical grants to develop kindly continued – and increased – her support since then. Since research is proving fruitful and has broader implications for the well as providing us with an opportunity to share
the careers of young researchers. We are grateful for the 2008 she has attended 23 events on our behalf, helping to raise mechanisms behind sporadic as well as familial MND. information. Since its launch, more than 91,000
Wolfson Foundation’s support during 2019. significant awareness and funds. messages have been posted.
14 15
You are at the heart of our fight for a world free from MND…
In recent years, a global explosion of interest has We are also involved in some exciting clinical trials, We continue to collaborate with partners around the
helped to ignite genuine optimism for the future of including the MIROCALS trial and the TUDCA-ALS world, including with the research centres and ALS/ “...the Symposium attracts
MND research. trial which are investigating whether drugs used to MND foundations which have come together to form
treat other conditions, such as kidney cancer and the Treatment to Cure ALS (TRICALS) consortium an increasing number
Significant advances in genetics mean that research
into MND has become one of the fastest-moving fields
liver cirrhosis, may be effective in treating MND. alongside clinicians and people living with MND. The of drug companies who see
Similarly, the Association is approving plans to consortium aims to speed up the search for effective
in neurological science – and thanks to your help, the
support a new international trial, called PRELUDE. This treatments by running drug trials more efficiently and potential opportunities for
MND Association is right at the heart of it.
will test whether lithium may slow the disease in a more effectively, including testing more than one drug developing new treatments,
The Association’s vision is simple – we want to see specific group of patients who carry a variation of the within the same trial.
a world free from MND – and to help us achieve that UNC13A gene, which is associated with the speed of something which I consider to
goal we continue to invest in ground-breaking MND progression. We have real hope for the future be hugely encouraging.”
research which we believe will give us the best chance
At the same time, we play a leading role on the
of discovering new and effective treatments and
world stage by organising the annual International
ultimately, a cure.
Symposium on ALS/MND – the biggest event of
its kind anywhere in the world. As well as being a
We’re working with our partners to We have never been more hopeful for the future of
place where researchers can come together to build
accelerate progress our work. On behalf of all our members thank you
important relationships and share their latest findings,
Your support allows us to play a leading role in for all that you have done – and continue to do – to
the Symposium attracts an increasing number of
innovative projects like Project MinE which aims to support us.
drug companies who see potential opportunities
discover more about the disease by analysing the DNA for developing new treatments, something which I Dr Brian Dickie,
of thousands of people living with MND. The UK is one consider to be hugely encouraging. Director of Research Development
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 “The Fellowship has
support the Association undoubtedly been the first
when I can, most recently step in helping to launch
“Your support allows us at a legacy event in my career as an aspiring
Cardiff, where I often clinician-scientist with an
to play a leading role in meet people living interest in regenerative
with or affected by MND neurology and MND in
innovative projects like Project which is so valuable and particular. It has opened
also humbling. I would like many doors for me, giving me
MinE which aims to discover more to thank the MND Association the opportunity to collaborate
about the disease by analysing for continuing support in so many with outstanding scientists, present
ways and especially thank the Wolfson Foundation for the research at national and international conferences and
the DNA of thousands of people financial backing for my research; it means so much to me to be involved with cutting-edge translational research.”
and my team.” Dr Arpan Mehta
living with MND.” Tatyana Shelkovnikova
2012 2014
£500,000 from the Department of Health to improve Discovery of the C9 gene mutation. Launch of the MND Charter. Red Flags tool is launched.
wheelchair services. For some years, researchers had known that a cause of The MND Charter is a five-point plan setting out what good GPs and others in the primary care team can make
This grant built upon the very significant fundraising undertaken by inherited MND was connected to Chromosome 9. In care for people living with MND looks like. Since 2012, the MND a great difference to the quality of life for people
former Association patron and longstanding supporter, Joel Cadbury, 2012, two separate international teams identified that Charter has been signed by more than 30,000 individuals, health with MND, with timely care, support and symptom
and his friends, who helped establish and fund our wheelchair service the mutation, or change, was an expansion within a gene boards, clinical commissioning groups and health and wellbeing management. The Red Flags tool for GPs was
over many years. In collaboration with manufacturers, we developed called C9orf72. Since this discovery, the Association has boards. It has been adopted by 93 councils across England, Wales devised to help identify the early symptoms and
a powered neuro wheelchair and were shortlisted for an innovation funded grants to study the way in which the C9 genetic and Northern Ireland and is being used by the Association to progression of MND to enable prompt early referrals
award. Today, the powered neuro wheelchair specification is used by expansion causes disease. By understanding the causes, campaign for improved services. to a neurologist.
many wheelchair services for people with MND. we can get closer to developing treatments.
16 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
people with MND and 204 without attended the
MND have donated samples and 30th International
clinical data to Project AMBRoSIA. Symposium on
All of the DNA samples donated ALS/MND held in
£14,500,000 by people with MND during their
first clinic visit have been sent for
Perth, Australia in
December
value of our research portfolio genetic analysis.
as at 31 December
200+
people participating in
400+
MIROCALS trial to test
Interleukin - 2 as a potential
new treatment for MND 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
84
people signed up to
the MND Register by 31
In November our UK MND
Collections received the 2019
projects
make up
£3,043,000 December
UK Biobank of the Year Award was approved and allocated
our research to 30 new research grants
portfolio
2014 2015
Association funded international researchers identify A film about the life of Professor Stephen The Ice Bucket challenge raises more than £7 The MND Association announces the creation
mistakes in the TUBA4A gene as a new cause of the Hawking called The Theory of Everything million for the MND Association. of Lady Edith Wolfson non-clinical research
inherited form of MND. premiered in London. This global mass participation phenomenon went viral on fellowships.
TUBA4A, encodes the tubulin 4A protein of every cell, including motor The film starred Association patron Eddie Redmayne social media during the summer. Participants were filmed Following the Ice Bucket Challenge funding, we launched a
neurones. This protein forms the structure of the cell, transporting and was based on a memoir by Jane Hawking. Eddie, having a bucket of ice water poured over their heads before new grants scheme with an award of four grants in the first
important molecules within the cell, including growth factors critical the Hawking family and The Hawking Foundation have publicly nominating others in a bid to raise awareness and year and two new grants awarded in the following years. Of
for neuron survival. Defects in this cellular transport system have been all continued to support us over the years and during funds. The money raised allowed us to accelerate a number the eleven grants awarded so far, five have completed, five
shown to be a cause of neurodegeneration and MND. 2019 by attending events and donating money. of key research and care projects. are ongoing and one is due to start in 2020.
18 19How we spent your donations You help us to achieve more…
None of the work we do to support people affected by MND would be Our fundraising highlights:
possible without the kindness and generosity of our fundraisers, donors,
corporate, trust and other supporters – and we are incredibly grateful. 68p
out of every £1 raised
Once again, the MND community has helped us
to achieve even more in the fight against MND by
Our Christmas Appeal, to raise money to help
support our work with children and young
Whatever their personal reason for wanting to get involved, our
was spent on funding our raising £4.13 million to invest in care, research and people, was our most successful appeal in 2019
supporters go to extraordinary lengths to support our work, some work in research, care and campaigning. raising more than £147,000.
pushing themselves both mentally and physically to raise as much money campaigning, 17p to fund
as they possibly can. support costs within the A huge thank you to former Scottish rugby The Linbury Trust donated £50,000, the second
Association, for example, international Doddie Weir OBE for continuing of four gifts in memory of prima ballerina,
Every donation, whether it is large or small, helps to make a difference, finance, information systems to support the Association’s support grants Annette Page. In March, The Royal Opera House
allowing us to support more people with MND right now, while funding and human resources and programme with a gift of £150,000 – our also hosted a tribute performance in memory of
vital research which will bring us closer to new treatments and the 15p on fundraising costs to partnership with the My Name’5 Doddie Annette, attended by members of her family and
possibility of a cure. generate our income.
Foundation is now entering its third year. many of the Association’s supporters.
£4.03 The Wolfson Foundation donated £375,000
during the year to fund The Lady Edith Wolfson
Including legacies, our fantastic branches and
groups contributed more than £2.4 million,
SOURCES OF INCOME* HOW WE SPENT THE was raised for every £1 spent Non-Clinical Fellowship Programme helping us to helping us to achieve more for people affected
MONEY RAISED* directly on fundraising in 2019. attract the brightest scientific talent in the fight by MND.
When legacy income and against MND.
expenditure is included, this We would like to thank The Freshfield Foundation,
rises to £5.87. Keta’s Journey – a 350-mile walk from Hartlepool The William and Frank Brake Family Trusts, the
to Godalming completed by family and friends in Edith Murphy Foundation, The Childwick Trust,
£10.5 million
was raised by our incredible
memory of Keta Hansen who lost her fight with
MND in early 2019 – raised more than £100,000
The Jordan Charitable Foundation and the Bruce
Wake Charitable Trust for their enduring support
and secured local and national press coverage. of the Association across many projects.
fundraisers and supporters in
2019 and our branches and Our 12-month partnership with Investec raised Thank you to the Alan Davidson Foundation for its
groups raised a further £2.0 more than £136,000 and HSBC’s Financial Crime continued support via standalone and matched
million. We would like to thank Compliance team raised £22,000 via an abseil grants during the year.
(£) million (£) million
everyone for all they have
Central fundraising £10.5 Care and support £6.1 at their Birmingham headquarters. Our partner,
done this year. We were delighted that the Foundation run by
Morson International raised more than £30,000.
Legacies £5.3 Research £4.1
Liverpool FC vice-captain James Milner supported
Branches and Groups
Earned income
£2.0
£1.0
Campaigning and
raising awareness
Volunteer development
£1.4
£0.8
£5.3 million
was donated in legacy gifts
Our thanks to the London Freemasons for funding
of £100,000 to fully fund a prestigious three-year
our work for a second consecutive year.
PhD studentship at University College London.
TOTAL £18.8 to the Association which have
Fundraising £2.8 This grant from the London Freemasons comes
made a significant difference through the Masonic Charitable Foundation,
Support Costs £2.9
to our income. We are
which is funded by freemasons, their families and
TOTAL £18.1 enormously grateful to those
friends from across England and Wales.
supporters who remembered
the work of the Association in
* These numbers are provisional and subject to final approval by the Board of Trustees. For a full their Wills.
breakdown of our financial position, our annual accounts will be available later in the year.
2016 2017 2018
The discovery of NEK1 gene, part of the research project, NICE guideline on MND is published. Credit Suisse UK selects the MND Association as Trial of digital advertising with the NHS.
Project MinE. After campaigning by the MND Association and their Charity of the Year partner. In 2018, we trialled digital advertising to neurologists and
The role of the gene NEK1 is a significant discovery as part of our supporters, the NICE guideline on MND was Working in partnership with Credit Suisse UK, the Association speech and language therapists on NHS intranet pages
the international research project, Project MinE. The UK is one published. To support the guideline, the Association helped devise a 12-month programme of fundraising promoting voice banking for people with MND resulting
of 20 countries which are contributing to Project MinE and the introduced a free-to-use audit and benchmarking activities including running, cycling, extreme sports in a 213% increase in requests for voice banking grants
Association’s contribution continued this year with an award to resource called Transforming MND Care to help clinics participation as well as concerts, tin collections and office- and equipment loans where adverts were placed.
sequence a further 50 genomes, bringing us close to our overall test their compliance within the guideline. based activities. The partnership raised more than £760,000.
target of 2,200 genomes.
20 21Looking to the future You are our inspiration…
At the time of putting together our Impact Report, Research A message from our Chief Executive: As the coronavirus pandemic continues to unfold, the
the UK finds itself in the middle of lockdown Association is adapting and responding decisively,
Whilst some of our 2020 research plans have One of the greatest strengths of
following the coronavirus outbreak earlier this year. ensuring people living with MND can access the help
changed, we will use all available opportunities to our Association is its community
and support they need at this particularly challenging
As a result, the Association is revising its existing continue to drive development and collaboration – extraordinary people who are
and worrying time.
plans and services for 2020 and beyond to reflect in research. determined to do whatever it
the changing needs of the people living with takes to improve the lives of all But with countless fundraising events cancelled,
The uncertainty around travel and large gatherings
and affected by MND across England, Wales and those who are affected by MND. the Association stands to lose up to a third of its
has meant we have cancelled this year’s International
Northern Ireland. annual income, a situation which we continue to
Symposium on ALS/MND, planned to take place It’s a community made up
monitor closely.
As always, our key priority is to support people living in Montreal, Canada during December. Instead of our members, volunteers,
with MND and their families in this challenging we are making plans to run a virtual Symposium campaigners, fundraisers and As ever, our extraordinary community has already
environment, helping them to access the support as a replacement event, to enable international donors – people just like you – who risen to this unprecedented challenge, taking every
that they need from Government and statutory collaboration between researchers and clinicians give up their time freely to raise money opportunity to find increasingly creative ways to raise
services while still working towards our longer term to continue. and support the work of the Association right across money on the Association’s behalf during lockdown –
vision of a world free from MND. England, Wales and Northern Ireland. every penny really does count.
We are continuing to assess research proposals
through our funding rounds in anticipation of being Thanks to your continued dedication and support, In the face of the challenges that undoubtedly
in a position to award new research grants as soon as in the past year we have been able to do even more lie ahead, I know our community remains strong
Support to people with MND and their families:
practically possible. to support families affected by MND – improving the and resolute and as committed as ever to doing
Our volunteers and staff have been in contact with care and support they receive now, while investing in everything possible to support people living with
everyone on our database who we know is living the ground-breaking drug trials and research projects MND both now and in the months and years to come.
with MND to offer support and advice. Campaigning and raising awareness which give us all so much hope for the future.
Thank you for your support.
During the pandemic, our volunteers and staff are Our priority continues to be that people with We are so grateful for everything you have done
using video technology to provide support to people MND get what they need when they need it. It already to help us, but in the months that lie ahead
affected by MND, directing them to information is particularly important that they have a strong we will be relying on your support more than ever.
and resources on our website, as well as assisting voice at a time when health and social care
with practical tasks such as shopping. We are also services will be under extreme pressure. We will
focussing on the needs of carers and considering also drive forward the Scrap 6 Months and Act to
the impact of bereavement on our community. We Adapt housing adaptation campaigns when it is
will provide information, guidance and support in appropriate to do so.
relation to visiting loved ones who are nearing end
of life, attending funerals and the grieving process.
We will adapt to the changing environment to
ensure services for people with MND remain
a priority.
2019
Children’s hub launched. Scrap 6 Months – campaign petition of 55,455
As early as 1993, the Association began the important task signatures handed into 10 Downing Street.
of supporting children and young people affected by MND Our Scrap 6 Months campaign launched in 2018, calling on
by producing age-appropriate information. In 2019 the the government to change the law regarding the Special
Association launched a new online resource, MND Buddies, Rules fast track process. During the 2019 General Election,
which provides a safe place for children to learn about the more than 12,000 emails were sent, more than 800 candidates
disease through stories and play. By the end of the year, the site pledged their support and 77 are now sitting MPs.
had received 7,381 page views.
22 23Thank 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 2020You can also read
