Here - Sheffield MND Research Advisory Group

Transcription

The magazine of the Motor Neurone Disease Association
Winter 2014
Mud, sweat
and beers!
Fundraisers get
tough with MND
Goinggoinggone…
on holiday
Thanks to the support of Sky News presenter
Charlotte Hawkins and Ultratravel we are inviting
you, our readers, to bid for the following lots…
Two nights in Edinburgh
Two-night stay for two
people including
breakfast at Nira
Caledonia hotel in
Edinburgh.
Minimum bid - £300
The prize is valid for travel until
31 October 2014
Bid for a
luxury holiday
and raise
money for the
Association
Four nights in Dubai
Two nights for two people
including breakfast at
The Address Downtown
Dubai plus two nights
for two people including
breakfast at The Palace
Downtown Dubai.
Minimum bid - £600
31 October 2014
Two nights in Budapest
Three nights in New York
with return flights
with return flights
Stay in the Four Seasons
Gresham Palace,
Budapest, with return
flights on British Airways.
Two nights for two people
in a Park Suite, including
breakfast and an Art Tour.
Three-night stay for two
in a Parkview Suite at the
new Viceroy New York,
including breakfast in
Kingside Restaurant with
return flights on British
Airways.
Minimum bid - £800
31 October 2014
Minimum bid - £1,500
31 October 2014
Send your bid, stating clearly which lot you are bidding for, how much you are bidding, with
your name, address, email address and telephone number, to ultrabid@mndassociation.org
The winning bid for each lot will be the highest received by the MND Association by 14 February 2014
This auction is open to residents of the UK, Channel Islands and Isle of Man aged 18 years or over, except employees of the Motor Neurone Disease
Association, Ultratravel and Telegraph Media Group Limited, their families, agents or anyone else professionally associated with the auction.
The highest bidder for each lot will be contacted and asked to send payment within two weeks. On receipt of the cheque, each winner will be sent the
prize vouchers by registered post. Rooms and flights are subject to availability and, unless otherwise stated, all flights are economy class. Each holiday is
for two, and is subject to separate terms and condition available by emailing conditions@mndassocation.org
6
Co-ordinated care
Making a positive difference.
8
International Symposium
Event attracts researchers and
clinicians from across the world.
18
‘Bake it!’
And help make MND history.
19
Review of 2013
The difference we made together.
24
Education
Influencing standards and quality of
care.
26
Time to make a change
Finding work through volunteering.
Cover image: Inspired by his brother Mark, who has
MND, Carl Bradshaw and his team got stuck into the
Tough Mudder challenge. See page 30.
Thumb Print is the quarterly magazine
of the Motor Neurone Disease (MND)
Association, PO Box 246, Northampton,
NN1 2PR. Reg. charity number 294354.
Editorial and advertising enquiries:
Paula McGrath, Editor, 01604 250505,
editor@mndassociation.org
welcome…
It hardly seems possible that one year has
passed since I joined the Association as
Chief Executive.
During the last 12 months, with your
significant contribution, we have made
important progress for people living with
MND, their families and carers.
We continue to fund and promote
research to bring us closer to a cure,
support those living with MND, their
families and carers, and campaign and raise awareness to ensure their
needs are recognised and addressed by society. You can read some key
highlights on the centre pages.
In December, I attended my first International Symposium on ALS/
MND. Some 950 people registered for three days of intense learning with
researchers and clinicians from across the globe. I am immensely proud
the Association is the organiser of this prestigious event. See page eight to
learn more.
We recently broadcast our first awareness-raising television advert, a
landmark for the Association. This fantastic opportunity was only possible
thanks to the invaluable support of TV presenter Nick Knowles and Eric
Rivers, who is living with MND. Read more about this story on page 33.
Some 35 years since we were founded by a small group of volunteers,
our growing community of members and supporters continue to share
the same goal – to support people with MND and everyone who cares for
them, now and in the future.
Our recently-published strategy will now guide us through the next
important stage of our journey, setting out our commitments and plans
until the end of 2016.
Whether you are among the many who have dedicated decades
of your life to this vital cause, or you have recently joined the MND
Association family, your support is greatly appreciated.
Over the last 12 months I have learned that there is something about
MND that sucks you in and steals your heart. Once you join this fight
it’s hard to leave it. This level of commitment from all those involved in
our work – supporters, volunteers, fundraisers, staff, campaigners and
researchers – fills me with the confidence that one day, together, we will
defeat MND.
Thumb Print is available as a pdf at
With best wishes for 2014.
The views expressed in Thumb Print are not necessarily
those of the Association. The advertisement of third
party products or services does not in any way imply
that those products or services will be provided,
funded or available via the Association.
Sally Light
Chief Executive
www.mndassociation.org/
membership
thumb print Winter 2014 03
research
dna
bank open for business
Our UK MND
DNA Bank has
now opened
its doors to the
worldwide research
community to
aid more crucial
discoveries about
MND…
Thanks to the
support of more
than 3,000 people
affected by MND.
MND is thought to be caused by a
combination of subtle genetics, lifestyle
and environmental factors. A small but
growing number of these genetic factors
are known, but to help this vital area of
research we began the UK MND DNA Bank
in 2003.
The gathering of samples has been
co-ordinated by three MND Care Centres
based at the institutes of the Principal
Investigators: Professors Pam Shaw at
Sheffield, Ammar Al-Chalabi and Chris
Shaw at King’s College London and Karen
Morrison in Birmingham
They invited people living with MND
to participate in research by giving a
blood sample. By the end of 2011, more
than 3,000 samples had been banked. In
addition to people with MND and their
family members, partners and spouses
also donated samples to work as a control
in research studies.
Together with the accompanying,
anonymised information on the
participants, these have been used to
create an important resource of DNA
samples and lymphoblastoid cell lines
(white blood cells), for MND researchers
to use.
“It’s a fantastic and high quality
international research resource
and exists thanks to people
with MND.”
In October 2013, the UK MND DNA Bank
opened for business to the worldwide
04 thumb print Winter 2014
MND research
community.
Dr Belinda Cupid,
our Head of Research,
said: “It’s a fantastic
and high quality
international research
resource and exists
thanks to people with
Dr Belinda Cupid
MND, their families
and the team of neurologists and nurses
around the country who helped collect
the samples.
“We’d also like to thank BioBanking
Solutions, Public Health England, the
Wellcome Trust and DeNDRoN for their
involvement in the project.”
Samples are stored at BioBanking
Solutions within the Centre for Integrated
Genomic Medical Research (CIGMR) at the
University of Manchester; and at Public
Health England.
Prof Stuart Pickering-Brown, from The
University of Manchester’s Institute of
Brain, Behaviour and Mental Health, said
the UK MND DNA bank would be useful
for scientists across the country.
Prof Pickering-Brown’s research focuses
on a common form of dementia, known
as frontotemporal dementia. Two years
ago he was part of an international
consortium of researchers who
discovered a rogue gene which can cause
both frontotemporal dementia and MND.
He said: “DNA collections like this are
absolutely vital to allow scientists like me
research
to continue to make breakthroughs and
developments in the study of MND and
frontotemporal dementia which can help
inform patient care.
Accessing the samples
Researchers can apply to the Association
for access to DNA Bank samples.
Our Biomedical Research Advisory Panel
(BRAP) guides us in the decision making
on applications to use these samples.
Samples are sent out to a researcher, if
their proposed study meets the following
access criteria:
• Relevant to MND
• New to science
• Scientifically justified
• Fully funded
• Ethically approved.
Donating DNA samples
DNA Bank at King’s College, London
“This will be the biggest collection
of DNA samples gifted by donors with
MND in the country. The University of
Manchester has no doubt been chosen
because within The Centre for Integrated
Genomic Medicine we have the
biobanking infrastructure, such as robotic
platforms in place to effectively manage
the samples.
“DNA banks allow scientists to explore
the mechanisms at play within a patient’s
DNA and how a particular gene can lead
to some people getting MND and others
getting dementia. What discovering the
gene has not told us is how this comes
about, and this is what my research is now
exploring.”
“I believe that the genetics of
MND are key to understanding
both the cause of the disease
and how to treat it.”
Dr Johnathan Cooper-Knock from
the Sheffield Institute for Translational
Neuroscience (SITraN) is using samples
from the bank to study how recently
discovered mistakes (known as
mutations) in a gene called C9ORF72 can
cause the disease.
He explained: “I believe that the
genetics of MND are key to understanding
both the cause of the disease and how
to treat it. The discovery of mutations in
C9ORF72 are a great opportunity to get
a hold on the mechanisms of the disease,
which has so far been elusive.
“As a result of my research I hope to
have identified a number of therapeutic
targets for development into new
treatments by myself and others.”
and advise researchers how they can
Colin Fenwick and his wife Alison both
more effectively communicate with
gave blood samples for the DNA Bank
patients.
in 2011.
Colin said: “Being members of the
Colin, 49, from Macclesfield said: “I
SMND RAG has given both of us an
had a formal diagnosis of MND at the
insight into how important it is for
end of 2010 and am lucky in that I have
patients to get actively involved in
fairly slow progression. I have not lost
research. We’d encourage anyone
my voice although my arms and legs
reading this to join a group like the
are weak.
SMND RAG or if
“My wife and
there’s nothing
I both have
in your local area
a scientific
then talk with your
background (in
MND Care Centre
molecular genetics
or the Association
and geochemistry
about how you can
respectively) so
get involved.”
take an interest in
Jennie Pierce
research and are
from Congleton,
also always keen
in Cheshire gave
to get involved in
a blood sample
any project that will
in 2011 together
help research of
with her husband
MND.
Pete, who is living
“It is exciting that
with MND. She
we have helped
said: “We both felt
contribute to such
very strongly that
a major resource for
it was something
researchers and that
Colin and Alison Fenwick with, son Jamie
we wanted to take
it is now accessible
part in. We always knew it would not
from anywhere in the world.”
benefit Pete but you have to look to
In addition, both Colin and Alison are
the future.
active members of the Sheffield Motor
“With grandchildren, it is important
Neuron Disease Research Advisory
to us to do everything we can to try
Group (SMND RAG).
and support finding out more about
This group meets once every three
MND in any way we can. Pete doesn’t
months to discuss research into MND
have the inherited form of MND but
that’s being carried out in Sheffield
there is still so much more to be known
both at the hospital and at SITRaN.
about the disease that makes this DNA
The group discuss how patients can
Bank vital.”
be better informed about research
Find out more
To learn more about our MND DNA Bank visit: www.mndassociation.org/dnabank or contact
our Research Development team on 01604 611880 or research@mndassociation.org
care
care
co-ordinated
– making a positive difference
Dr Cathy Ellis speaks to Stanley Ansell who is living with MND and his sons Tony (left) and David
The complex nature of MND means those
living with the disease often receive care
and support from a wide range of health
and social care professionals.
In addition to a neurologist, this
may include an occupational therapist,
physiotherapist, specialist neurology
nurse, speech and language therapist and
dietitian, among others.
Our recent Improving MND Care survey
showed there has been an increase in the
number of people who have a named
person co-ordinating their care since
2009.
We know co-ordinated care makes a
positive difference to people and we have
influenced and funded a number of
co-ordinator posts.
MND Care Centres
Neurology clinics at hospitals across
the country bring together a number
of specialists to provide co-ordinated
care for those living with a neurological
condition.
Recognising the benefits of this way of
working, since 1990 the Association has
developed a number of MND Care Centres
and Networks in partnership with NHS
trusts across England Wales and Northern
Ireland. In 2012 we opened our 19th care
centre in Bristol.
Care centres gather together
professionals to focus purely on MND and
build and share expertise and knowledge
about the disease.
An MND Care Centre or Network is
not a purpose-built building, but a place
where people come together to make
things happen, creating a ‘one stop shop’
and improving the standards of care for
people living with MND and their carers.
MND Care Centres usually have one or
more dedicated MND clinics and provide
a single point of contact specifically for
people with MND, called a care centre
co-ordinator (CCC)
“ One of the Association’s priorities
over the next three years is for
more people to be able to access
care through a specialist MND
Care Centre or similar multidisciplinary approach.”
Centres provide expertise in the
management of MND, access to a multidisciplinary team, and strong links with
local community services and the MND
Association.
They also share good practice with
other colleagues in the community to
educate and spread expertise across the
region.
Karen Pearce, our Director of Care
(South), said: “Our MND Care Centres
and Networks do not replace an
MND Care Centres and Networks
individual’s existing care team, but work
in partnership with them to promote and
develop effective service delivery.
“One of the Association’s priorities over
the next three years is for more people to
be able to access care through a specialist
MND Care Centre or similar multidisciplinary approach.”
Not everyone attends an MND Care
Centre or Network, as many hospitals also
provide an effective service for people
with MND, and these may be closer to
home. However, the work of MND Care
Centres informs standards of care for all
those living with MND.
care
Post Doc student Agnes Nishimura
Clinical staff in the King’s Care Centre clinic
Sally Light speaking with Jason Smith who has MND
“My MND co-ordinator is very thorough in keeping myself and other
medical practioners involved in my care, informed of any new developments
or findings, and answers any questions I may have.” Person living with MND
The essence of good care
Sally Light, our Chief Executive, recently
visited The King’s MND Care and Research
Centre in London to see first-hand the
difference it makes.
She said: “I was struck by the range
of staff available to meet with anyone
who needed to see them. I saw people
meet a palliative care doctor, speech
and language specialist, physiotherapist,
dietitian and the specialist MND nurse.
They also have access to a respiratory
function service so if people are having
breathing difficulties they can be
assessed, and advice or treatment given.
“Access to this multi-disciplinary team
of professionals is the essence of what
good care looks like for people living
with MND and their families. That is why
we continue to promote and fund the
multi-disciplinary model whether at an
MND Care Centre, Network or as part of a
regional neurology service.
“It was extremely heartening to see
the kindness with which people were
treated – the unhurried discussions, the
sensitivity with which difficult subjects
were introduced, the genuine care and
concern.
“I also witnessed some of the amazing
work that is going on to help us to better
understand MND, and one day find a cure.
I spent time with Prof Ammar Al-Chalabi
and Prof Chris Shaw, hearing more about
their research and touring a laboratory.
They have teams of scientists working on a
number of threads of research.
“Both are experts in genetic research
and their work is part-funded by the
Association. They were very clear about
the important contribution this funding
had made both to their research work and
in support of the MND Care Centre.”
Care Centre Co-ordinator is my lifeline
Brian Taylor, aged 72, from Staffordshire,
was diagnosed with MND four years ago.
His local neurologist referred him to
the Birmingham MND Care and Research
Centre at the Queen Elizabeth Hospital.
Brian explained: “I always find the staff
very reassuring. They always want to know
if you have all the aids you could possibly
need. They advise on what you didn’t
already know about. You learn about aids
by going there and they always help as
much as possible to get them.”
Brian added: “It is reassuring to have the
Care Centre Co-ordinator at the end of the
‘phone. She has helped with my concerns,
especially in the early days.
“She said my symptoms are not out of
What can a MND Care
Centre offer people
with MND?
•Regular review by a neurologist
with expertise in MND
•A team that works together to
provide an assessment of each
individual
• Advice, information and support
•A proactive service which
anticipates future needs
•An opportunity to see more than
one therapist at clinic
•An opportunity to be involved in
new research projects at clinics
(where available)
Any new referrals to a Care Centre
or Network must be made by a GP,
neurologist, or other consultant.
What support can they
provide for carers?
• Advice, information and support
tailored to a carer’s needs
• Advice about the Carers Assessment.
Find out more
Brian Taylor and his wife Margaret
the ordinary, which has eased my mind. We
don’t have a specialist nurse for MND in my
local area so the co-ordinator is a lifeline.”
If you are in any doubt about where you
can receive care and support, your Regional
Care Development Adviser (RCDA) will be
able to support you. Alternatively contact
our MND Connect Helpline
Email: mndconnect@mndassociation.org
Telephone: 08457 626262
research
symposium
Rising stars present at
More than 950 delegates registered for
our 24th International Symposium on
ALS/MND. The meeting in Milan brought
together people from 34 countries to hear
the latest research and care news.
December’s event was the biggest
symposium yet, with over 100
presentations from both science and
clinical research specialists in two lecture
halls over three days.
Our Director of Research Development,
Dr Brian Dickie, said: “The coming together
of research and care professionals from
around the world is crucial for sharing
knowledge, skills and expertise. It is by
working together that we can, as a global
body, work towards improving the lives of
those with MND and ultimately towards
our vision of a world free from MND.”
Presenters ranged from respected
experts in the field to up-and-coming
young MND researchers. Brian added:
“I was particularly impressed by the
number of new faces coming in to
the field – established scientists from
other disciplines as well as new young
investigators. They are bringing lots of
new energy and new ideas. It is reassuring
to know the future of MND research is in
safe hands.”
Delegates attend a poster session
Our Chief Executive Sally Light, who
was attending her first symposium, said
everyone there had a passion to work
towards a cure.
“ Once you join this fight it’s
hard to leave it and many at the
symposium have already spent
decades of their lives dedicated
to this cause.”
Poster sessions
Networking in Milan
Aside from the formal presentations,
a large proportion of the research
presented at the symposium is in the
form of a poster. This could show latest
results or new ways of researching an
existing problem. It is quite often a PhD
student’s introduction into presenting
their work face-to-face with peers.
Poster sessions were held on two
evenings with informal networking
around nearly 400 examples. Poster
summaries, called abstracts, are provided
ahead of the symposium so delegates can
identify those that interest them most.
“There is something about MND and
the people who live with it that sucks you
in and steals your heart,” she explained.
“Once you join this fight it’s hard to
leave it and many at the symposium
have already spent decades of their
lives dedicated to this cause. That level
of established commitment, along with
some of the brightest young researchers
from around the world, can only be a
good sign for the future.”
The Association’s UK MND DNA Bank
was presented as a poster, showcasing
the high quality resource to the
international MND research community.
Twenty posters were shortlisted and
judged by the Symposium Programme
Committee in both scientific and clinical
categories.
The clinical poster prize was awarded to
Dr Mieko Ogino, from Kitasato University
in Japan. The scientific poster prize
was jointly awarded to Dr Dirk Baumer
(Oxford University, UK) and Laura MacNair
(Toronto University, Canada).
research
Why we attend the symposium...
“The latest motor
neurone disease
research from
across the world is
in one location and
you can catch up
with friends and
colleagues, discussing
ongoing and future
collaborations and
stimulating research
ideas which form
the next funding
applications.”
Dr Janine Kirby is
based at the Sheffield
Institute for Translational
Neuroscience (SITraN)
at the University of
Sheffield.
“Being a scientist, the
stereotypical answer to
why I attend would be
that the best science
was presented by the
best scientists in the
different sessions.
However, the informal
meetings and
discussions were even
more important.”
Dr Ludo Van Den Bosch
works at the University
of Leuven developing
models of MND. He,
like Janine (left), is also
a BRAP volunteer and
is also a member of the
Symposium Programme
Committee.
“It is ten years since
the symposium was
last in Milan and there
are now several major
genetic pathways to
explore, not just one,
and multiple models
to test new treatments.
We are slowing down
the ‘MND supertanker’,
and can start to see
how we might turn it
around.”
Dr Martin Turner,
based at the University
of Oxford, is a MND
Association/Medical
Research Council (MRC)
Lady Edith Wolfson
Clinical Fellow.
Sharing research
on twitter –
conversations
@mndresearch
We reached 324,953 Twitter
users during the symposium
from 1,491 tweets with
#alssymp used nearly two
million times!
“It was great to feel a
part of such a massive
research community.
The symposium
provided me with a
fantastic opportunity
to present my work
and bolstered my
enthusiasm for
research too.”
Alex McGeachan is
a third year medical
student (University of
Sheffield). He was busy
taking examinations the
day before he flew out
to present in one of the
clinical sessions.
“Patients are at the
core of all aspects
of the conference,
whilst recognising
the importance of
integrating basic
science and clinical
research. I like the
way the symposium
attracts the whole
multi-disciplinary team
involved in the care
and research of MND.”
Dr Ceryl Harwood, like
Martin (centre), is an
MND Association/MRC
Lady Edith Wolfson
Clinical Fellow.
The science
behind the
symposium
The Association’s Sam Price tweets with
Dr Marcus Rattray
@MarcusRattray It’s been a great conference. Some new
ideas to take back to Bradford #alssymp
@KatherineM_RD Feeling inspired following the 24th
International Symposium for ALS/MND #alssymp
@ALSHF From the Alliance meeting to the APF to the
Symposium what a great week for shared information!!
@ALSMNDAlliance @mndassoc #alssymp
@BernardusMuller A big THANK YOU to the organizing
committee of a successful #alssymp @mndconference
@mndassoc @DrBrianDickie @sallylight17 and all the others.
We reported ‘live’ from
the symposium, tweeting
from both clinical and
science presentation
sessions as well as the
two evening poster
sessions.
Association-funded researcher, Dr Richard Mead
You can catch up on
some of the news through our MND research blog, where
we translate some of the symposium science and make it
accessible to those without a white coat.
Topics range from the latest genetic research to
neuroimaging and more details of the winners of the poster
prizes.
Visit www.mndresearch.wordpress.com or contact the
Research Development team on 01604 611880 or
research@mndassociation.org to request printed copies of
the reports.
awareness
Football v MND –
we’re striking back
“It was great to have Everton
get on board and to have a
mention in the derby game
which I was at, being a lifelong
Liverpool fan.”
Other non-league sides on our team
sheet include Bromley, Cambridge Utd,
Aldershot Town, Harrogate and Colwyn
Bay. A full list is available at
www.mndassociation.org/football
Mark said: “It was great to get Everton
on board and to have a mention in the
derby game which I was at, being a
lifelong Liverpool fan. But more than
anything I have been blown away by
the support from what I now call my big
football family up and down the country.”
The campaign has generated media
interest too, with Mark interviewed on BBC
Radio Merseyside. BBC Radio Devon ran
an extended feature with Mark on the eve
of the Exeter City game against Bury. His
running exploits were part of a Five Live
radio documentary and he has appeared
on Manchester United TV (MU TV).
One family v MND
Chris with wife Vanessa at the Hampshire ground of
AFC Totton.
Chris Maple recently lost his fatherin-law Mike Gulliver to MND. He said:
“MND is very new to us as a family,
but seeing its impact and how quickly
it takes hold has made us all want
to do as much as can to support the
Association.
“It was a proud feeling for my
family and I, turning up wearing our
MND T-shirts. The Chairman of AFC
Totton welcomed us warmly and was
genuinely happy to be supporting
the campaign. I just emailed
football@mndassociation.org and
then used the poster to approach my
local club.”
Watford player
Nyron Nosworthy
Exeter City mascot
Grecian the Lion
Join our Football
v MND team
Help Mark reach his target of 300
match day programmes by the end
of this football season. It’s easy to get
involved and you don’t even need to
be a football fan.
Check our
Football v
MND website
to see if your
“I lived for football
club is already
but now I’m dying”
on our roll of
honour. If not,
email football@
mndassociation.
org for a copy of Our awareness poster
Mark’s awareness
poster and templates to help you
contact your club.
Visit www.mndassociation.org/
football to find out more.
Please spread the word through
your branch or group, Facebook page
Mark Maddox
Altrincham FC
1996 – 2006
Motor neurone disease is fatal and rapidly progressive.
Around half of those diagnosed die within 14 months.
Watch Mark’s story
mndassociation.org/football
@mndassoc
Take our Crossbar Challenge
Find us at #vMND
/mndassociation
To make a £5 donation text MND Football to 70004. Texts costs £5 plus your standard network rate.
The MND Association will receive 100% of donation. Please obtain bill payer’s permission.
or newsletter.
Registered charity no. 294354
We have received a fantastic response so
far to our awareness campaign Football v
MND.
Thanks to you, our awareness-raising
poster has already appeared in more than
100 match day programmes – reaching
an estimated 450,000 football fans up and
down the country.
Our supporters and branch and group
members have approached clubs at
all levels with a simple request - to run
our awareness poster featuring former
semi-professional Mark Maddox in their
programme.
Mark appeared over 300 times for
Altrincham FC before he was diagnosed
with MND in 2010. Having run the
London Marathon and skydived for the
Association, he is now on a mission to
raise awareness of MND even further and
is fronting our campaign.
Everton were the first Premier League
team to support Football v MND, soon
followed by Stoke City, but it is not just
professional teams getting involved.
Merseyside club Cammell Laird FC in the
Evo-Stik League are even featuring the
Association’s logo on their shirts for the
rest of the season.
your stories
How MND has affected your lives
A life full of love and lavender
Pauline Lomax looks back on the life of Ellen Finnegan, 57,
of Manchester who died from MND in September
My friend Ellen Finnegan loved life,
laughter and lavender. She treasured her
family and enjoyed being a nurse.
Ellen had been having some health
issues before they were recognised as
symptoms of MND.
When Ellen received the diagnosis, she
knew full well what to expect. However,
she was more concerned about how her
siblings would react. Ellen’s sister Bernie is
a palliative care nurse in south Wales, but
that didn’t make it any easier to bear. At
first, Ellen didn’t think she could face the
MND journey ahead of
her, but, at each stage
of the condition, Ellen
battled on, trying to
eke out all the joy that
she could from life.
Ellen loved colour,
the arts, creativity
and poetry. She loved
painting and produced One of Ellen’s paintings
some splendid
work in spite of her lack of mobility. She
continued with her painting until she could
no longer use her right hand. This was a
remarkable achievement, as at the age 57,
she hadn’t painted since she was 16. For
her friends and family, these paintings are
even more precious, as they reflect Ellen’s
determination to carry on living life as fully
as she could.
Ellen loved lilac, the colour of lavender,
and in several of her paintings she reflected
the Monet impressionistic style with
several versions of The Lilies with varying
shades of lilac.
Bernie said: “Ellen was surprised anyone
thought her paintings were any good! I
thought they were masterpieces bearing in
mind how difficult it was to paint. You had
real spirit Ellen and you didn’t know it!”
Ellen was surrounded by her loving
siblings, nieces and nephews who loved
her as much as she loved them. One of
Ellen’s nieces Hayley, was to be married and
Ellen was keen to attend the wedding, over
a hundred miles from Manchester, where
she lived.
Ellen needed
support for breathing,
but undaunted and
with the unstinting
support of two nurses
from the hospital, plans
were put in place.
One of the nurses,
Marie Kirwan asked if
Ellen needed to go to
the wedding? The answer was affirmative.
It turned out that Ellen had nursed Marie’s
auntie during the last few months of her
battle with cancer. In Marie’s family, Ellen’s
name was synonymous with compassion
and care. For Marie, this was pay-back time.
Marie volunteered her assistance along
with Eleanor Moran, and the two nurses
travelled with Ellen in a hired ambulance to
the wedding at 1pm.
At 1.25pm, the bride had still not arrived
and nor had Ellen. The registrar came out
Ellen Finnegan, centre
to advise that if the bride was not there
presently, she would have to continue to
her next wedding engagement.
Hey presto, at 1.40pm, Hayley, the
beautiful bride arrived in the classic car
that Auntie Ellen owned. The first question
was: “Is Auntie Ellen here?”
Hayley was about to enter the church,
when the ambulance arrived.
The wedding party proceeded up the
aisle with Hayley on her father PJ’s arm,
bridesmaid Claudia, followed by Ellen
wheeled by her brother, John.
The ambulance had been lost on the
windy Lake District roads and had followed
the classic car to the church. All the family
had a fantastic day.
One of the things that strikes me about
Ellen’s MND journey was the obvious love
and understanding of not just her physical
needs, but also her emotional needs and
wishes.
When I think of Ellen now, I think of love
and lavender!
Overcoming the obstacles of MND
Terry Cameron, a retired schoolmaster from Ebbw Vale, South Wales, was diagnosed with MND in 2012.
Sadly, Terry died late last year, but during
the course of his illness he came up
with numerous ways of coping with the
obstacles that MND presented.
Initially, MND predominately affected
Terry’s left arm and hand and he attended
physiotherapy sessions once or twice a
month. As Terry’s condition progressed, he
came up with ways of making day-to-day
tasks a little bit easier.
At the time, he said: “Knowing how
pleased I feel on discovering some little
tactic that helps my condition, I cannot
but wonder if Stone Age or Iron Age man
did not feel elation at the discovery of fire,
stone and flint tools and weapons. I really
hope that he did.”
Terry’s tips include:
• Pull holes to buttons, rather than buttons
to holes
• Pass string through zip holes to give you
leverage on the zip
• Use a rubber pad to help with opening jars
•U
se sharp scissors to cut meat and
sausages
•U
se a bulldog clip to hold cheque book
stubs while writing a cheque
•U
se a rubber cushion to improve the height
position and comfort of dining chairs
•K
now your limitations in stamina and
movement.
In addition, he suggested using equipment
such as a long-handled shoe horn,
footwear with velcro fastenings and a
camera which can be used with one hand.
your stories
Still planning ahead
Martyn Brummell, from Weston-super-Mare, explains how planning
ahead and an active life help him stay positive.
Martyn Brummell
I was diagnosed with MND in February
2010. To say my diagnosis was a shock is
an understatement. I was always a very fit
person and at the time of being told, I had
already run four half-marathons since the
age of 60.
I am now 70 . My wife Carole and myself
do like our holidays. The photo shows me
in Switzerland near the Matterhorn.
Being a very positive person I had two
options: to sit back and do nothing, or
carry on and lead an active life. I chose
the latter. It is now nearly four years
since I was diagnosed and my voice has
deteriorated and my left arm is a little
weak. I am still able to do 10 miles twice
a week on the treadmill, to keep my arms
and legs moving.
The NHS, through my speech therapist,
has provided me with an iPad with
speech prediction, and I do find this to
be a great help. I would recommend an
iPad to others with anyone with speech
problems.
My wife Carole has been very
supportive, as have my many friends
at the at the Bristol, Bath, Weston and
Winsley Group that we attend, thinking
of Ray Hulbert, Gil Osman, Dianne and
Gareth. They do lots of hard work to raise
money, organise our monthly meetings
and to raise awareness of MND, which is so
important.
My wife and myself are still planning
ahead and we are have already booked
our next holiday hopefully to Scotland
and to cruise the Baltics. It so important to
stay positive.
I hope my story will encourage others
who are in the same position as myself.
Water way to show support
Miles Worth, 47, from Salford took part in five Open Water Swim events to raise money for the
Association after being touched by a friend’s story.
Swimmer Miles set himself a personal
challenge for 2013, to take part in
multiple Open Water Swim events all
over the country to raise money for the
Association. He took part in five events,
swimming more than 16km in races and
hundreds more in training.
The season started in very cold
conditions at Salford Quays in April with
water temperatures of only eight degrees
Celsius.
Fortunately, the weather improved
greatly and Miles managed to get some
sun while swimming at Eton Dorney,
Ullswater and Derwentwater in the
Lake District and in Combs Reservoir,
Derbyshire.
He ended his fantastic challenge when
he took the plunge in The Monster Swim,
Loch Ness in stunning surroundings.
Miles said: “It proved to be quite an
occasion. As predicted, the weather
became a huge issue for organisers and
swimmers alike.
“The wind picked up so much that the
swell and roughness of the water got so
bad that the race had to be abandoned
about halfway through. It was scary and
exhilarating at the same time and many of
us wanted to continue the swim, but the
organisers would not allow it.
Miles Worth
“I was a bit disappointed that my fifth
challenge of the year ended up being an
anti-climax but the thrill of taking part in
such an iconic event was fantastic.
“I had set myself a target to fundraise
for MND and I’m pleased that I’ve
managed to achieve what I set out to do.
It’s been really tough at times but I’m glad
I did it and have already started to look
towards next summer for a series of 3.8
and 5K events in various parts of the UK.
“It may be a little early to start planning
but it would be a real goal to attempt a
10K swim in my 50th year which gives
me two summers to prepare, I’m 47 now
so some might say I’m planning a midlife
crisis!”
Miles resolved to raise money for the
Association after being inspired by his
friend, Sam Ward who swam for charity
in 2011. Sadly, in late 2012, Sam’s mum,
Pauline Ward, affectionately known as Toll,
was diagnosed with MND.
He said: “The decision to raise money
for such a deserving cause was an easy
one, especially after I heard that one of
my friend’s families was being directly
affected by such a cruel and heartbreaking condition.”
your stories
Asking for help can be hard
Here, 52-year-old Ann Franklin from Norfolk, describes how
difficult it can be to lose your independence and become more
dependent on others.
I retired as a psychologist and counsellor
through ill health six months after my
diagnosis with a rare form of MND called
Primary Lateral Sclerosis (PLS).
What’s on my mind at the moment, and
has been for a while, is the acceptance of
help from others. I was very independent,
as I am sure a lot of you were, or are,
but I am becoming more dependent on
others around me. This is not only hard
for me, but hard for those of my family
and friends who knew me before I was
diagnosed.
Being a psychologist/counsellor and
empowering people one way or another
all my working life, I found it hard to ask
for help from people. It didn’t enter my
head that I couldn’t do something.
It took three years for me to be
diagnosed, two years before being
referred to a neurologist, as my GP at the
time was concentrating on the possibility
that the problem with my walking may
have been due to a back problem. It was
never considered that I had a neurological
issue. It took another GP in the same
practice to refer me, once she had seen
me walk. Then there was a year of tests,
which I am sure many of you will have
endured before diagnosis.
I was given the diagnosis by letter, a
copy of a letter sent to my GP from the
neurologist. I was handed the letter by a
receptionist while I was alone.
Having lived with MND for nearly seven
and a half years, I am finding I need more
help to do things. It is so frustrating
not being able to put my jewellery on
by myself; putting my socks on is a
challenge and cooking is becoming more
and more difficult. I use a four-wheeled
walker and cannot walk far now. I used to
love long walks.
I drop things, the most spectacular
being a jar of beetroot which went
everywhere! I was on my own, my 12-yearold son had gone to the park and my
husband was at work and I was convinced
I could clear up. It took me a long time
and I only left a small amount on the floor,
but I had tired myself out so much that
five minutes later I fell over and cracked
Ann Franklin
my head and arm on the door frame into
the larder. I had to press my alarm and
the paramedic came; all from trying to be
independent!
I want to still be independent, but my
husband and friends hover round me in
case I fall, which I have done a number of
times. It’s annoying, but they really can’t
win. When I want help they don’t offer it
to me and when they do fuss around me, I
get frustrated because I say, ‘I can do that
by myself’. Mostly though, I don’t realise
I need help until it’s too late, it’s all so
frustrating!
Golfer swings into fundraising action
When Kevin Rhodes was made Captain of Druids Heath Golf Club
in the West Midlands, he did not hesitate in nominating the MND
Association as his chosen charity.
Kevin with his brother, Peter and son Matthew
Kevin knew three people living with MND,
and saw the devastating impact it had on
their lives and those of their families.
He said: “Two of them were active
golfers, who suddenly had their ability to
play cruelly taken away just at a time in
their lives when they had more free time
to enjoy the game. I couldn’t just watch
this disease destroy people’s lives without
trying to do something about it.’’
With the overwhelming support of
his fellow golf club members and their
friends, his Captain’s year raised £10,000
for the Association.
Kevin said: ‘’ I was amazed how people
rallied round not only to give their money,
but also their time and support for the
cause.’’
That experience made him think if
he could raise awareness of MND in his
own golf club then he could do the same
in some of the other 2,000 plus clubs
in England and Wales, and raise muchneeded funds for the Association. He came
up with the idea of Thumb Golf Club.
This internet-based club offers free
membership to anyone with an interest
in golf. The website offers a number of
benefits to its members, depending upon
their reason for joining.
The club provides up-to-date golf news
and stories, allows members to play an
internet-based golf game, and a chance to
bid for a game of golf at selected courses
around the UK.
It even has a 19th hole where members
can buy virtual drinks at the bar, with the
money going to the Association.
Kevin said: “I believe that the internet
golf game is a great attraction and is great
fun for golfers and non-golfers alike, and
is very realistic”.
Kevin can be contacted through Thumb
Golf Club at www.thumbgolfclub.org
your stories
Matt’s the way to do it!
Family and friends of a man from the West Midlands raised £7,500
for the Association after taking part in the Birmingham Half
Marathon in October.
The two Matthews
Matthew Garde and his friend Matthew
Cutler dressed up as the 118 118 duo to
raise money to support our work on behalf
of his father Martin, 57, who was diagnosed
with MND two years ago.
Mr Garde’s niece, Melanie also joined
in, as did his brother, John and his former
colleague and friend of the family, Karl
Jones. Matthew, who completed the
course in two hours and raised more
than £1,000, said: “It was a great chance
to do something that was rewarding. The
atmosphere was just great.”
Mr Garde’s wife, Diane, 55, said: “Karl
worked alongside Martin for many years
and was very upset when Martin had to
give up work because of MND.
“People who work with Karl at Howard
Lee & Son in Cradley Heath have made
donations and we are so proud of all of
them for what they have achieved.”
Karl, who took part in the event with
his colleague, Tania Cowley, said: “When I
heard the news of Martin’s diagnosis, I felt
totally helpless.
“I decided that I needed to lose
some weight, so I signed up for the half
marathon and hoped that I would be able
to raise some money at the same time.
“I was absolutely amazed at the support
we had. We raised £5,935.
“It has been truly heart-warming just
how willing people are prepared to aid a
good cause, let’s hope our contribution
makes life a little more comfortable to
those less fortunate than ourselves, and
aids further research into one day finding
a cure.”
Making a difference, 4,500 miles from home
Lucia Woodward became an Association Visitor after losing her husband John to MND in 2005.
While supporting people living with
MND and their families near her Surrey
home, Lucia is also committed to raising
awareness and improving standards of
care 4,500 miles away... in Nepal.
She recently returned to South Asia
to mark a special landmark for the MND
Support Society (Nepal), which she
founded with the support of a local
doctor and two neurologists. Lucia writes:
The MND Support Society (Nepal)
celebrated its first anniversary on
1 December by organising a training
programme on MND for the doctors,
nursing and therapy staff of the College
of Medical Science at Bharatpur and GPs
from the Chitwan region.
The training session looked at
the variety of MND symptoms and
was followed by a screening of the
Association’s awareness film I Am
Breathing, before a question and answer
session. The aims of the Society were
also set out, underlining the importance
of providing practical and emotional
support to people affected by MND from
the moment they are diagnosed, during
their everyday life in the community
and the final stages of the disease.
Presentations included end-of-life care
links between cancer patients and MND
patients.
The whole programme was designed to
consolidate MND knowledge among GPs
and staff of the Neurology Department,
and to spread wider awareness thanks to
the invited media also present.
It is encouraging to see just how far
the Support Society has come in only 12
months. Thanks to the commitment and
sheer energy of the Committee’s founding
members, supported by neurologist Dr
Lekhjung Thapa, we are establishing a
database with a part-time secretary being
recruited. And the Committee is already
faced with the dilemma of deciding which
patients they can help with the current
level of resources.
The progress and future plans for the
Support Society must be seen in context;
Nepal is a very poor country. A large
proportion of housing has no electricity,
and equipment we take for granted, such
as hoists, is only available in one or two
wards of the main hospital. Transport
and communications are restricted and
profound religious beliefs and cultural
differences influence the most basic
decisions of everyday life. Nevertheless
the changes already achieved have been
amazing and the dedication of everyone
involved bodes well for the future.
Lalmaya Ramjan, who has MND with a visitor from the
MND Support Society (Nepal)
your stories
Ian spreads the word about our Charter
Since being diagnosed with
MND, Ian Pratt, from Barnsley,
has work tirelessly to raise
awareness of our MND Charter.
This important document sets out the
Association’s vision of how those with
MND should be given the right care, in the
right place, at the right time.
The 43-year-old said: “When I was first
diagnosed in September 2012, I had
never heard of MND. Whilst difficult to
face, I understand that I may not live
long enough to see my three-year-old
daughter Georgiana grow up, nor will I be
able to nurture, protect and comfort her
as this disease progresses.
Caption
Sir Andrew Cash signing our Charter
Ian Pratt with his mother
“My wife Catherine is not only my wife,
she is my carer and supporter. Catherine
helps me with day to day functions like
dressing and showering as I am less
able to do these basic things without
assistance.
your stories:
We love hearing from you.
Please send your stories to
or
Editor, MND Association,
PO Box 246,
Northampton, NN1 2PR
“Whilst incredible advances are being
made, I have accepted that there won’t be
a cure in my lifetime, so our Charter will
make more and more people aware of
MND and what it can do to you. This can
only be a good thing, as it represents what
good care looks like for all people living
with MND and their carers.
“I have been working hard to help
raise awareness of this disease. Several
local newspapers have covered my
story of living with MND, including the
Barnsley Chronicle, Yorkshire Post and the
Sheffield Star.”
As a result of Ian’s efforts to increase
awareness, Sir Andrew Cash the Chief
Executive of Sheffield Teaching Hospitals
NHS Trust, joined health colleagues from
across the region to sign up in support of
people with MND. Sir Andrew said: “Motor
neurone disease is a truly awful disease, so
I’m honoured to be pledging our support
to this important Charter.”
Ian said: “This is fantastic, and a huge
step forward in ensuring the local
hospitals understand and implement the
priorities of good care as set out in the
Charter for all people with MND.”
Have you been using
the Charter to raise
awareness and influence
local decision makers?
Please share your story with us.
Or would you like to find out
how you can get involved in
promoting our Charter in your
local area?
Please email campaigns@
mndassociation.org or phone
the Campaigns team on
01277 655926 and request a
local action pack.
your stories
Remembering Doll
Cuddle Seat
In this moving piece, Alex
Richards, 90, from Kent
remembers his wife Doll, who
he lost to MND.
Thanks to years of perseverance,
the idea of a Cuddle Seat – a
dual occupancy riser-recliner
chair – has come to fruition.
Joyce Onslow from Mid Kent
Branch explains.
In early 2010, Doll started to have some
falls and she would lose the power of her
legs. She had tests and the consultant said
it could have been caused by a mild stroke
and put her on medication.
Her condition worsened and social
services supplied certain equipment
including a walking frame and I purchased
a wheelchair. They seemed reluctant
to discuss carers and I looked after Doll
myself.
We saw the consultant again. He was
not satisfied and thought it could be
muscle degeneration and sent Doll to
King’s College in London for further tests
in January 2011. She was diagnosed with
MND.
The consultant at Darent Valley Hospital
told us it was terminal, but could not tell
us how long Doll had and told me to look
after her.
We came home in a bit of a dream and
I will always remember, for the rest of my
life, Doll’s words. She said: “We have had
a good marriage love, but they are the
cards we have been dealt and we have to
accept them.”
Doll was very strong and she gave me
the strength to accept it.
With the help of Age Concern, we
managed to get Attendance Allowance
and started to get visits from an MND
Association Visitor, Maureen Tingley, who
was also a member of our flower club.
We also had visits from the dietician. By
now, Doll was wholely dependent on the
wheelchair, even indoors and, up until the
beginning of May, I was still looking after
Doll on my own.
Then she had another awkward fall
and Doll ended up in hospital. It turned
out to be a blessing in disguise as
representatives from the Ellenor Lions
Hospice got involved. Doll had always said
she wanted to be at home and they got
things moving.
Doll came home and Ellenor Lions
Hospice, carers and her doctor all came
and arranged for a hospital bed to be put
in the lounge and carers to call round
three times a day.
Alex Richards with his wife Doll
I fitted a cord to the chimes in the hall
so Doll only had to pull on it and I could
get up and see what she wanted, if only to
hold her hand or stand and comb her hair.
I regret there were times when I seemed
to get things wrong, but these were few
and far between.
Her voice went and she had a writing
pad to write down what she wanted to say.
We had a sitter from the Ellenor Lions
once a week which gave me the chance to
get out, though I was never happy being
away from Doll for too long.
We decided between ourselves to take
it one day at a time and at about that time
a quote appeared in the newspaper which
said: “Do not let tomorrow’s sorrow spoil
the joy of today.”
During her illness, Doll’s sense of
humour never faltered. When an engineer
came to check the hoist, as he left he
called out: “See you six month’s time!”
When I went back into the lounge, Doll
had written: “Wanna bet?”
Doll went very peacefully on November
20, 2011. Her funeral was held on
December 12, a day before what would
have been our 70th wedding anniversary.
I realised I had to get on with my life.
I started to get back to bowls and I am
playing a few games. I also rejoined the
National Trust and am making a lot of
visits to their properties.
With the big 9-0 coming up, I hope to
carry on with my life as Doll would have
wanted.
The idea first came from Sarah Lavender,
Senior Occupational Therapist at the
Wisdom Hospice in Kent, who recognised
that patients become isolated when their
partner, grandchildren, or even pets are
unable to sit next to them to provide
physical contact and affection.
Karl Grossfield of the Tana Trust was
willing to support such a development
financially and encourage its introduction
to the market. Mr Grossfield approached
the Furniture Research Association and
also funded design students in Canada to
work on the project.
Three chairs have now been made. One
is on loan in Mid Kent and the second at
the request of the Tana Trust, has gone to
a soldiers’ care and rehabilitation centre
home in Blackpool to support the charity
Help for Heroes.
The manager comments on the comfort
and quality of the chair and the ease
of transferring with a hoist or from a
wheelchair.
Without the generous financial support
and encouragement given by the Tana
Trust we would have been unable to get
beyond the ‘good idea’ stage.
We were very excited that Sarah
travelled to the Allied Professionals
Forum at the Association’s International
Symposium to present a talk on the
development of the chair.
A DVD, which shows the seat in use,
is available on loan if you would like to
know more about it. Email joyceonslow@
btinternet.com
Regional Care Development Adviser, Sara
Murray, said: “It’s great that this has come to
fruition from an idea in 2007.
“It shows what can be done with a little
perseverance! The chair isn’t suitable for
everyone and we recognise that not everyone
would want this large piece of furniture
in their home, but there may be a real
opportunity for care homes, hospices and
other organisations to purchase the chair.”
news
Association supporter and mountaineer Sir Chris Bonington talks to our Royal Patron, HRH The Princess Royal
Princess joins leading scientists
at our Research Dinner
Our annual Research Dinner is always
an important night in the Association’s
calendar and this year’s event was extra
special as it was attended by our Royal
Patron, HRH The Princess Royal.
Held in November at The Royal Society
in London, our event was the third in 2013
Her Royal Highness had agreed to attend.
She was met on arrival by our President,
Prof Colin Blakemore, and our Chairman,
Mark Todd.
Over 50 guests attended, all of whom
had generously funded research coordinated by the Association or supported
our work in other ways. Many had a
personal connection to MND. The evening
gave us the opportunity to thank them for
their support, update them on research
over the past year and encourage their
future involvement.
During the evening, Her Royal Highness
spoke about how she hoped guests
found encouragement from such events,
and thanked them for their support. She
explained that their involvement had
made a real difference and highlighted
that continual strides forward in research
needed patience and funding to make
progress.
Two question and answer sessions
enabled guests to find out the latest
scientific breakthroughs in MND research
from leading scientists.
One of the highlights of the evening
was a presentation by Prof Siddharthan
Chandran, the MacDonald Professor of
Neurology at the University of Edinburgh,
who spoke about the latest scientific
research he has undertaken thanks to
grants from the Association.
Pictured right from top: Our President Prof Colin Blakemore
welcomes guests; HRH meets England cricket Performance
Analyst and The Broad Appeal fundraiser Gemma Broad;
Activity challenge fundraiser Steven Smith, who has raised
almost £100,000 for the Association introduces his son Elliot
to our Royal Patron; Prof Siddharthan Chandran (far right)
speaks with guests; Prof Kevin Talbot from the University of
Oxford with supporters Julie-Ann and Gary Goldsmith.
fundraising
Our delicious fundraising campaign ‘bake
it!’ created quite a stir in 2013 – and the
good news is it’s back.
Individual supporters and our branches
and groups across the country organised
cake stalls, coffee mornings, afternoon tea
parties and good old-fashioned bake sales
to raise funds during our MND Awareness
Month in June and beyond.
Jean Taylor proved she is a dab hand at
putting the fun into a Fun Day. Her friends
and the local community in Headcorn,
Kent were treated to good food and
entertainment with games such as ‘guess
the weight of the cake’ and a raffle, while
a kids’ corner meant cream teas could be
enjoyed undisturbed!
The day was held in tribute to her late
husband John, who played a big part
in the village, organising the Christmas
lights until he died in 2009. Five other
villagers who have experienced MND first
hand supported the event, which raised a
fantastic £820.
When asked the secrets of her success,
Jean said she could not advocate enlisting
the help of family and friends enough.
special occasion to raise funds on behalf
of her lovely sister-in-law, Judith, who
sadly could not be with her to celebrate
because of MND.
Bake it! is an event for everyone to
enjoy so invite your family, friends and
colleagues to join in the fun.
With more fundraising tips, support
materials and an online toolkit to help
boost your bake sales, we look forward to
welcoming you on board.
Our fundraising packs will be available
soon, in the meantime keep a look out on
for further information at
www.mndassociation.org/bakeit
Jean Taylor
She added: “The other big reason for our
success had to be the weather – it was
such a glorious day everyone wanted to
stay and enjoy the sunshine. If only I could
book this in advance every year!”
Margaret Scott also held a baking stall
at a table top sale at Thursby Parish Hall,
raising £67.50. Margaret celebrated her
60th birthday last year and also used this
Margaret Scott
Get involved: Contact our Fundraising
team, on 01604 611860, fundraising@
mndassociation.org
Sky’s the limit for Adrian’s colleagues
Adrian. Some 35 people signed up for
the challenge, raising £16,000 for the
Association.
“ The fact that we had raised such
a phenomenal amount of money
and we could support our friend
and his family through a hard
time was incredible.”
Dimension Data Plc’s skydivers
What do you do on a cold rainy
Wednesday afternoon at work when
a close friend and colleague has been
diagnosed with MND?
This was the question Natasha
Woodhouse from Dimension Data Plc, in
Fleet, Hampshire, asked herself back in
March, keen to support Adrian O’Shea.
Natasha decided the answer was to
jump out of a plane, and set about getting
as many colleagues as possible to take
part. She was amazed at the support for
Natasha said: “It had to be the single
most exhilarating thing that many of us
had ever done. The fact that we had raised
such a phenomenal amount of money
and we could support our friend and his
family through a hard time was incredible.
“Adrian turned up with his family to
support and thank every single member
of the Dimension Data Sky Dive team.
We are now looking forward to our
next extreme sports challenge for the
Association. I just need to find something
a little more dangerous!”
our impact and our future
The difference we
made together
in 2012/13
By working together we
have achieved an enormous
amount for people with MND,
their families, and everyone who
cares for them. I congratulate
and thank all those who support
our work including our members,
volunteers, supporters, and
above all, people with MND.
The Association is an
amazing place to glean
knowledge about MND. It
pulled me out of the depths.
I don’t know what I would
have done without that
support.
Davina Rivers, wife of
Eric who has MND
Sally Light, Chief Executive
Raising money is so
important but raising
awareness is just as
valuable. I have raised
thousands of pounds and
have told thousands of
people about MND too.
People with MND have
a devastating condition. It
affects them in every way
possible, in every aspect of
their lives, and their family’s
lives. By finding the causes
we will be closer to finding
the cure.
Mark Maddox,
living with MND
Prof Ammar Al-Chalabi,
King’s College London
MND has taught me
to live in the moment,
surrounded by the
people who love me. The
Association funds vital
work to help families like
mine make the most of the
precious time we have left
together.
MND is a horrible
disease for everyone
involved, so it is important
to raise lots of money to
help the Association make
the biggest difference to
people’s lives.
Charlotte Jackson,
Association fundraiser
Maria Watton, living with MND
Thank you
Our achievements in 2012/13 were thanks to the combined efforts
of our members, volunteers, supporters, patrons and staff, who
together make the Association as strong as it is today.
We have demonstrated how, by working together, we can make the
biggest difference possible to those affected by MND in England,
Wales and Northern Ireland.
Improving care
and support
We help people access
a multi-disciplinary
clinical team through our
specialist care centres,
the work of Regional Care
Development Advisers and
our Association Visitors.
We loan equipment and
provide financial assistance.
Our MND Connect helpline
is complemented by our
online forum.
800
DNA SAMPLES
USED IN
RESEARCH
£7.6m
RESEARCH
FUNDING
PORTFOLIO
89
55,000
1.,288
1.,022
BRANCHES AND
GROUPS PROVIDED
LOCAL SUPPORT
PIECES OF CARE
INFORMATION
ISSUED
PEOPLE RECEIVED
ONE-TO-ONE
SUPPORT
PIECES OF
EQUIPMENT
PROVIDED
THREE
Funding and
promoting research
62
We have over 30 years
experience identifying
and funding the most
promising MND research.
We have invested more
than £18 million over the
past decade, both in the
UK and across the world.
As we work towards a cure,
recent findings have helped
us identify several causes of
MND, improve diagnosis and
accelerate new treatments
and approaches.
CLINICAL
FELLOWSHIPS
CO-FUNDED
HIGH-QUALITY
RESEARCH
PROJECTS
FUNDED
Campaigning and
raising awareness
265,000
CAMPAIGN
NETWORK GREW
TO
MONTHLY REACH
ON FACEBOOK
1.80
Raising the profile of MND
is vital in ensuring our voice
is heard at all levels as we
support, campaign and
lobby on behalf of people
affected by MND.
VOLUNTEERS
13,000
.
SIGNATURES
SUPPORT OUR
CHARTER
Fundraising
highlights
In 2012/13 2,256 supporters
organised fundraising events
that raised more than
£1.3 million.
Money raised by our central
fundraising team accounted
for £6.7 million and our
branches and groups raised
£2.3 million.
78p
in every £1 we
spend directly
helps people
affected by MND
Overall Income
achieved was
£13.3m
an increase of
over £500,000
(4%) on 2011/12
We empower people to
campaign effectively, both
nationally and locally while
stepping up our influencing
work at Westminster and in
AWARENESS
CAMPAIGN
REACHED
25m
249
Our Christmas
appeal raised
trusts provided
grants worth
£840,000
£160,000
A recordbreaking total
The Midlands
Co-operative
raised a further
Our runners
in the London
Marathon and
GREAT NORTH
RUN raised over
£65,000
£375,000
Financial overview
We spent
£7.2m
Through a combination of
income growth and tighter
control of our costs, we not
only balanced the books but
also generated a surplus of
£365,000 in 2012/13.
improving care
and support
78p in every £1 we spend
directly helps people
affected by MND now and in
the future.
WE SPENT
£2.9m
Overall income was
£13.3 million.
ON FUNDING
AND PROMOTING
RESEARCH
Our shared commitments and
plans for the next three years
The challenge now is to build on our achievements and continue to deliver
our mission for people with MND and everyone who cares for them.
Priorities include to:
Provide more effective equipment loan
and financial support services that meet the
needs of people with MND, including reviewing
supplier contracts to ensure value for money.
Provide leadership in setting up and
funding new international research
programmes that bring together the best
minds and the latest technology.
Expand our wheelchair service to two more
sites, and put in place ways to continue the
service after grant funding runs out in 2015.
Invest in research that fills knowledge gaps
in clinical management of MND, adding to the
evidence base and driving improvements in
care.
Campaign for people with MND to have
free social care towards the end of life.
Pursue new research opportunities and
collaborations that best support progress
towards a world free from MND, while
continuing to respond to the growing number
of new and established researchers applying
to us for funding.
Support people during the rollout of
personal health budgets in England, including
help to access Continuing Healthcare (CHC)
funding.
Ensure more people can access great
care, through a specialist MND Care Centre or
similar multi-disciplinary approach.
Develop a population-based MND register
to help measure the impact of co-ordinated
care provided through our MND Care Centre
network.
Build online and social media presence
to raise the profile of MND and our work, while
supporting our volunteers to engage with local
news outlets.
Transfer learnings between the diverse
approaches to MND health and social care in
England, Wales and Northern Ireland, helping
people get the best care available, wherever
they live.
Secure the first official National Institute
for Health and Care Excellence (NICE) MND
guideline and quality standard relating to
MND, and ensure these reflect people’s needs.
Use the next General Election campaign
to make candidates nationwide aware of the
challenges of MND and actions they can take
to address these, using our MND Charter.
With our Association family beside us, we will deliver our mission
for people with MND and everyone who cares for them.
One day, together, we will defeat MND.
fundraising
millions of steps for
£1million
In the last decade, an incredible £1 million
has been raised by over 17,000 pairs of
feet supporting our event – Walk to d’feet
MND.
This fun-for-all fundraiser has seen
you take part in: treks up mountains,
technicolour wig walks, coast-to-coast
scrambles and animals hops. We have
also had a celebrity appearance from
EastEnders, Cliff Parisi, who added a
certain ‘minty’ freshness and the shortest
walk by Ashley Morgan, who has MND
and at the time was only able to walk with
assistance.
In the 10 years since it started, the
popularity of Walk to d’feet MND has
grown from 26 events in 2003 to 89 in
2013, stretching from Cumbria to Cornwall.
We have been delighted to see the
interest grow every year and thrilled
supporters keep coming back. Sarah Lee
from Gorleston and Mike Findley from
Redcar have both organised an annual
walk since 2006, that’s 16 events between
them so far!
We couldn’t have achieved this success
without the support of our branches and
groups. A particular thank you going to:
Cambridgeshire, North Wiltshire, Kings
Lynn, Derbyshire, West London and
Middlesex, South Essex, South Bucks,
Northants, Tyne and Wear, East Dorset
and New Forest, Reading and West
Berks and East London, who have seen
fantastic fundraising results from regularly
organising this event over the years.
Congratulations and a huge thank you
to all our wonderful walkers!
We know that walks and treks make up
12% of all our fundraising activities and
as a new year starts, we are venturing into
what we hope will be the next decade for
Walk to d’feet MND, encouraging many
more people to get involved.
A walk can be any distance, from a
saunter in the park, a stroll along the
bridleways with your pet, a glow-in-thedark night walk or a mystery ramble
around a maze; there are no limits!
Why not organise a Walk to d’feet
MND in 2014? It’s a sociable and fun
way to raise awareness and vital funds
to support our work.
Our Fundraising team is on hand to
help make your walk a success. Please
contact fundraising@mndassociation.
org or call 01604 611860.
*WALK TO D’FEET is a Trademark of The ALS Association and is used with permission. All rights reserved
care
education,
education,
education,
The education of health and social care professionals
is an important area of our work, and this is one of our
priorities for development over the next three years.
We strive to be a trusted educator for
those who provide and make decisions
about MND care. We are working to
increase the number of professional
bodies and royal colleges that include
MND in their teaching and training of
health and social care professionals.
Education is an essential activity for the
Association. Through our programme of
education, we directly influence standards
and quality of care for people with MND.
We do this by:
•Supporting professionals to navigate
the complexities associated with MND
•Providing on-going professional
development
•Training anyone associated with
providing care or support to a person
living with or affected by MND.
Our education activities are mainly
delivered by our network of 26 Regional
Care Development Advisers (RCDAs).
RCDAs are based in the heart of local
communities and develop effective
relationships with health and social care
professionals, our volunteer Association
Visitors (AVs), our MND Care Centres and
Networks and those affected by MND. This
means they are aware of the local issues
and needs which can be addressed and
influenced through education.
During the last 12 months our RCDAs
organised around 200 education events.
These ranged from MND Care Centre
events and regional study days for
hundreds of people, to intimate groups
for social workers and specialist teams
and nursing home staff.
RCDAs also supervise our AVs and
their ongoing development though
local support meetings and regional AV
development days.
Large scale events
RCDAs Colin Pearson, Sue Smith and
Jane Evans, organised an education
event in York, attended by 100 health
and social care professionals from across
North, East, South and West Yorkshire,
Humberside, Cleveland and the North
East. The study day focused on end of
life issues.
It included speakers from Hull and
Harrogate Hospices showcasing a
specialist worker role as a means of
ensuring quality and continuity of care.
Carers from York Carers Forum gave
a heartrending presentation about
issues which challenged professionals
to consider carers’ needs, whilst North
Yorkshire’s Mental Capacity Officer
explained how mental capacity can
often be confused and questioned by
professionals when a person lacks the
ability to communicate.
“ It was extremely heartening
to see the passion of the
professionals to make a difference
for those affected by MND.”
“The feedback from the event has
been extremely positive,” said RCDA Colin
Pearson. “We never expected during the
planning stages to have so many health
and social care professionals attend and
from so many disciplines.
“We hope to make this an annual event
as it allows us to reach a large number of
professionals in a cost effective way and
directly impacts upon the quality of care
within our region.
“It was extremely heartening to see
the passion of the professionals making
a difference for those affected by MND
and the event allowed education but also
A wide range of health and social care professionals may be
involved in the care and support of someone living with MND
more importantly an element of peer
support and learning from each other.
Many professionals are isolated due to
the relatively small number of people
with MND in local team areas.”
Specialist education events
Hilary Fairfield, like many other RCDAs,
organises and facilitates regular local and
specialist education events, often known
as MND Special Interest Groups (SIGs) for
professionals in her patch.
For example, in Gloucester, 15
professionals met and focused upon
‘Continuing Healthcare in MND.’ The
day significantly impacted upon the
quality Standards of Care in the area
as the professionals understood the
complexities and processes around
Continuing Healthcare (CHC), particularly
when to refer patients with MND into
the system.
RCDA Sal Hastings runs medical
student training with a colleague from
the Multiple Sclerosis Society in the North
West of England.
She said: “We frequently hear from
those people living with MND that many
professionals often haven’t even heard
about MND, never mind know the finer
details and how symptoms might be
managed on a daily basis.
care
Red Flags for GPs
More people with MND will have
earlier access to care and support,
thanks to our work to reduce the time
it takes to diagnose MND. We are
helping GPs spot ‘Red Flag’ symptoms
that may indicate MND and make
earlier referral to specialists.
Early diagnosis of MND is important
for many reasons, including:
•Removal of uncertainty for the
person experiencing symptoms
•Allowing for care and support to
start as early as possible
•Enabling the person with MND and
their carer to plan for the future
•Increasing the window of
opportunity to research into, and
better understand, the condition.
“Therefore the
training of future
generations of
professionals is vital
to raise awareness of
the disease, but also
to improve both the
quality and standards
of care.”
The role of the RCDA
Sal invites a person living
with MND to speak to the medical
something back and contributing to the
students and this is enormously beneficial
future care of others with MND.”
and valued by the student, many of whom
If you would be interested in speaking
have never met someone with MND.
at educational events, please contact your
She explained: “The feedback from
RCDA. Find their details at
those speaking is extremely positive
www.mndassociation.org/rcda or contact
and people are keen to get involved in
MND Connect on 08457 626262.
educational events. It’s one way of giving
MND Charter
Our MND Charter calls for all people with MND to receive the right care, in the right
place, at the right time. We are urging people to sign the Charter to ensure everyone
is working together towards this vision.
More than 14,000 people have shown their support and signed, including many
representatives from organisations involved in providing care and support for
people living with MND, and those who make decisions about the provision of
services.
These include the Royal College of General Practitioners, the Royal College of
Nursing, British Association of Occupational Therapists, Royal College of Speech and
Language Therapists a number of hospices, hospitals and GP surgeries.
Find out more at www.mndassociation.org/mndcharter
We have been working with the
Royal College of General Practitioners
(RCGP) on an early diagnosis Red
Flags guide. This simple, memorable
tool is aimed at GPs as they will
usually be at the beginning of the
diagnosis process. We are also raising
awareness of
the tool with
Painless, progressive weakness –
Could this be Motor Neurone Disease?
other health
professionals.
Red Flags
aim to
increase GP
awareness
of MND,
reducing
inaccurate
referrals and
decreasing
the time to
diagnosis. It has been developed by a
group including our MND Care Centre
Directors, specialists and GPs.
The tool is a simple A4 page and
has further sections on the reverse
for those who want more detail
and explanation. It describes the
symptoms of MND and asks doctors
and healthcare professionals to
consider these with patients.
A copy of our Red Flags document
is available at www.mndassociation.
org/redflags
1. Does the patient have one or more of these symptoms?
Bulbar features
• Dysarthria
• Slurredorquietspeechoftenwhentired
• Swallowingdifficulties
• Liquidsand/orsolids
• Excessivesaliva
• Chokingsensationespeciallywhenlyingflat
• Tonguefasciculations
Respiratory features
• Hardtoexplainrespiratorysymptoms
• Shortnessofbreathonexertion
• Excessivedaytimesleepiness
• Fatigue
• Earlymorningheadache
• Orthopnoea
Limb features
• Focalweakness
• Falls/trips–fromfootdrop
• Lossofdexterity
• Musclewasting
• Muscletwitching/fasciculations
• Cramps
• Nosensoryfeatures
Cognitive features (rare)
• Behaviouralchange
• Emotionallability
(not related to dementia)
• Fronto-temporaldementia
2. Is there progression?
Supporting
factors
• Asymmetricalfeatures
• Age–MNDcanpresentatanyage
• PositivefamilyhistoryofMNDorother
neurodegenerativedisease
Factors NOT supportive
of MND diagnosis
• Bladder/bowelinvolvement
• Prominentsensorysymptoms
• Doublevision/Ptosis
• Improvingsymptoms
If yes to 1 and 2 query MND and refer to Neurology
If you think it might be MND please state explicitly in the referral letter.
Common causes of delay are initial referral to ENT or Orthopaedic services.
Additional resources:
MND Association downloads and publications at www.mndassociation.org
http://www.mndassociation.org/Resources/MNDA/Migrated Resources/Documents/G/GP MANAGEMENT OF MND_1778.pdf
http://www.mndassociation.org/OneStopCMS/Sites/MNDAssociation/e-learning/
Motor Neurone Disease: a problem solving approach (PX016) comprehensive MND Association GP booklet endorsed by the RCGP
volunteering
Our volunteers make a real difference to those coping with MND.
But did you know that volunteering might also help you find
the perfect job?
change
time to make a
At the start of a new year,
thoughts often turn to
new beginnings and
maybe finding a new
job. But at a time when
finding employment can
be tough, there is one
way you can make your
CV stand out from the
crowd, while you make
a valuable contribution
to your community…
volunteering.
Whatever role they
support us in, our
volunteers make a real
difference to the lives of
people affected by MND.
It is personally rewarding
and has even helped
individuals to find work
both in, and outside, the
organisation.
Rachel Brown is now an MND Connect Adviser
Stand out from the crowd
Becky Thornton, Volunteering Development and Projects Manager at
Northampton Volunteering Centre said: “Volunteering helps people to gain new
skills and knowledge, to get back into the routine of working and gain up-to-date
references. It can also show that people have been doing something constructive
during a period of unemployment.
“A lot of jobs and further education courses now ask for practical experience,
and volunteering can be a really good way of getting this.
“It can also be useful if people are looking to change direction in their career,
and want to get a taste of what a different kind of work can be like. Due to the
nature of the job market at the moment, employers are getting many applicants
for each vacant role, so volunteering is an added extra on someone’s CV or
application can help them stand out and look more employable.”
volunteering
“I gained a lot from my
experience including an
understanding of MND
and an appreciation of
how the disease affects
those with it, their families
and friends.”
“As I had been
unemployed, I really
enjoyed the sense of
getting back to work.
I enjoyed the work
that I was doing and
I was lucky to work
within a very friendly
and welcoming team.”
Bill Harper-Wright
Rachel Brown
“I had access to great
training and information
through working with
the Regional Care
Development Adviser
and attending courses
run by the Association.”
Louise Rickenbach
Bill Harper-Wright
Rachel Brown
Louise Rickenbach
Bill, from Northampton, volunteered within
the Volunteering Team at the Association’s
national office in Northampton, when
he was unemployed. Before moving on
to a paid role outside the organisation,
Bill processed volunteer applications and
supported staff with their day-to-day work.
He said: “I was motivated to volunteer
to build self worth and respect through
contributing to a team that was helping
others. After a year of volunteering, I found
a job outside the organisation.
“I gained a lot from my experience,
including an understanding of MND and
an appreciation of how the disease affects
those with it, their families and friends.”
To what extent has volunteering at the
Association helped Bill find work?
“I believe that volunteering has had a
great effect. As a future employer sees
you have remained motivated to make
a meaningful use of your time and to
contribute to a meaningful objective,”
he said. “The Association is a brilliant
cause to volunteer for; the team is very
friendly, focused on supporting those who
support people with MND and ensure
you are equipped to do the role that is
assigned to you. Above all they do not take
volunteers for granted and greatly value
the contribution you make.”
When Rachel Brown found herself out
of work, her Job Centre Plus advisor
recommended volunteering as a way to
boost her CV and experience.
She explained: “My advisor then told
me that he had lost his Dad to MND. His
story really touched me and so I applied
to volunteer at the Association.”
Rachel eventually went on to secure a
role as an MND Connect adviser.
She said: “As a volunteer, I was an
administration assistant at national office.
“As I had been unemployed, I really
enjoyed the sense of getting back to
work. I was lucky to work within a very
friendly and welcoming team who were
very supportive of both my volunteering
work and my search for permanent
employment.”
“Professionally, I gained new references
and work experience which enabled me
to apply for jobs. I became more confident
in my own abilities and this then helped
me to find a permanent job.”
So what would Rachel say to people
who may now be thinking of volunteering
at the MND Association?
“Definitely do it. It’s a great cause and
a fantastic experience. I wouldn’t change
a single thing about my experience as a
volunteer.”
Louise, from Hampshire, first had contact
with the Association while working as a
community physiotherapist.
While working part-time, she found she
had free time and decided to volunteer
as an Association Visitor (AV), offering
confidential emotional support, and
information to enable people with MND
and their families to make informed
choices.
She said: “I had access to great training
and information through working with
the Regional Care Development Adviser
(RCDA) and attending courses run by the
Association.
I greatly increased my knowledge
base about the disease as well as recent
technology and research advances.
“I learned that there are many types
of volunteers, all doing important, but
different roles”.
Louise said working as an AV helped her
understand the type of work she enjoys.
“Volunteering has been amazing,” she
said. “I was successful in becoming the
new RCDA for the south central area.
Having been an AV has given me a
great head start in my knowledge of the
Association and local links in the area. I
also have a great awareness about how
the visitors can work in different ways.”
get involved
Have you been inspired by these stories? We have a variety of volunteer vacancies available across the country. To find out about
volunteering opportunities in your area please contact us: Telephone: 08457 626262 Email: volunteering@mndassociation.org
care
Candid information about
endoflife
Thanks to all those people with MND
who have shared their views on end of
life issues through our recent surveys and
studies.
These important findings are now
helping us provide information, shape
future research and campaign on this
important, and sensitive area.
We know people often find it difficult
to discuss the end of life with those close
to them, and with health and social care
professionals.
However, these conversations can
also worry professionals. It is not an easy
subject, but the ‘unknown’ often causes
most fear.
People with MND who do wish to
discuss end of life planning, are seeking
full, clear and honest answers. End of life
decisions involve a wide range of subjects
from treatments to personal finances and
planning for your family’s needs.
As a result of your feedback, we have
developed a new publication called, End
of Life – a guide for people with motor
neurone disease. A range of issues is
covered in a candid and comprehensive
way, including how the disease will
progress, the treatment and withdrawal
options available, how to talk about these
and how to help ensure your decisions are
respected.
Dr Colin Campbell, recently retired
Palliative Medicine Consultant, from Saint
Catherine’s Hospice, Scarborough said:
“This is an important and potentially
landmark piece of writing. I have faith that
the Association is doing the right thing in
making this material available.”
One of our panel of 15 expert reviewers
for the guide, Dr Campbell continued: “It is
brave and probably breaking new ground
to be so refreshingly candid with patients
when describing what may happen.”
With MND it is particularly important to
have discussions about end of life as early
as someone feels ready to do so. Speech
and communication can be affected,
which may make discussion increasingly
difficult. Some people also experience
changes to the way they think and
reason, which may impact on the ability
to make decisions. Yet, having made their
decisions, many people tell us they feel
relieved. They can then put them to one
side and get on with living.
Comments from our reviewers have
included:
“This is a very difficult topic for those
of us with MND. But it is a topic which
should not be avoided. I commend the
organisation for its courage in doing so.”
“Thank you for having the courage
to tackle this. I found the references to
end of life options an essential part of
the guide and, believe it or not, very
refreshing.”
“I found this extremely helpful.
Especially as a springboard for further
discussion with professionals.”
Dr David Oliver, Consultant in Palliative
Medicine, Wisdom Hospice, Rochester and
Honorary Reader, Centre for Professional
Practice, University of Kent, acted as a
mentor throughout the development of
the guide.
He said: “This publication will
encourage end of life discussions
between people with MND and their
family, and with health and social care
professionals. They may be difficult
conversations, but they are so important,
as they allow the person with MND and
their family to ensure that their own
wishes are known and that appropriate
care and support can be provided.”
“ Thank you for having the
courage to tackle this. I found the
references to end of life options
an essential part of the guide and,
believe it or not, very refreshing.”
Our End of Life guide will be available
soon. You can order a copy by contacting
our MND Connect helpline, 08457 626262,
mndconnect@mndassociation.org
care
Help shape the future of palliative
and end of life care research
We are supporting a new survey, to
enable people who are likely to be in the
last years of life, current and bereaved
carers, their families, and frontline social
and healthcare professionals or clinicians
to have their say in setting future
research priorities for palliative and end
of life care.
Despite ongoing research, there are
still many aspects of palliative and
end of life care research that remain
unanswered or unknown.
Dr Belinda Cupid, our Head of
Research says: “We are asking for your
help because we want to improve care,
support and treatment for people in the
last few years of their lives. We know that
many people have important questions
about care, support and treatment, and
we want to find out what they are.
It is an area that is currently underresearched and this ground-breaking
project will be invaluable to help guide
our future priorities.”
Please think about your own
experiences of care, support and
treatment and fill in this simple survey. You
can complete it online, over the phone or
by asking for a paper version to be posted
back to a freepost address. The survey
will be open until 30 April 2014 and will
enable people to highlight what research
questions are important to them.
Dr Christopher McDermott, Clinical
Senior Lecturer and Honorary Consultant
Neurologist at the Sheffield Institute for
Translational Neuroscience said: “The
Palliative and end of life care Priority
Setting Partnership is a really positive
development as it aims to establish
priorities for future research funding.
“It is vital that healthcare research
addresses issues and reflects some of the
priorities for people living with MND.”
To take part in the survey and to find
out more visit
www.palliativecarePSP.org.uk or
telephone 0207 091 4153.
Westminster launch for
palliative care report
The All-Party Parliamentary Group
on MND has launched a report into
palliative care services in England.
The report, A Matter of Life and Death:
a picture of palliative care services for
people with MND in England, followed
an audit of Primary Care Trust (PCT)
provision last year. The audit found
that only 15% of PCTs knew how many
people with MND were living in their
area and that many didn’t prioritise
palliative care.
The report was launched at an event
in Parliament and was welcomed
by the National Clinical Director for
Neurology, Dr David Bateman.
Dr Bateman said it was his ambition
to ensure everyone with MND could
access high-quality care no matter
where they live.
Roch Maher was diagnosed with
MND in 2009 and spoke candidly about
his experience with local health and
social care services including a hospice.
Your views inform our work
Improving MND Care survey
Difficult conversations
Last year’s survey invited people with
MND to give their views on service,
support and what is important to them
when living with the disease.
Some 951 people responded, making
it the largest survey of its kind for people
with MND in the UK. Optional questions
about end of life concerns were answered
by 589 people.
The National Council for Palliative
Care has written a series of Difficult
Conversations booklets to help health and
social care professionals and people with
specific conditions talk about end of life,
including Difficult Conversations – Making
it easier to talk about the end of life with
people affected by Motor Neurone Disease.
This was informed by interviews with
60 people living with or affected by MND,
and their carers. Health and social care
professionals were also consulted.
The booklet, commissioned by the
Association, can be purchased at
www.ncpc.org.uk/difficult_conversations
Choices and control when you
have a life shortening illness
We commissioned this study through
Picker Institute Europe. It held an
independent investigation into the needs
and wishes of people with MND in the
areas of death, dying and end of life
decision-making. Picker interviewed 34
people living with MND and produced the
report in 2012.
We recognised that we need to work
harder to provide opportunities and
support for people with MND to talk
about end of life issues if they want to,
including training for our own staff and
volunteers.
Want to talk?
If you would like to speak with someone
about end of life care and MND please
contact our MND Connect helpline
08457 626262, email mndconnect@
mndassociation.org
Do you have personal experiences
you would like to share to support our
campaigning activities? If so please
contact campaigns@mndassociaiton.org
Chris James, Roch Maher and Dr David Bateman
Chris James, our Director of External
Affairs said: “We know that access to
specialist palliative care is patchy at
best and hopefully this report will lead
to more universal provision so that
everyone with MND can access the
care they need, no matter where they
live or whatever their circumstances.”
We will be using the report to
influence local decision makers
including Clinical Commissioning
Groups, Health and Well-Being Boards
and councillors.
You can download the report at
www.mndcampaigns.org or order a
copy on 01604 611684.
fundraising
Fundraisers
get stuck in
Carl Bradshaw and his team took on the
Tough Mudder challenge in October in
honour of his brother Mark, who was
diagnosed with MND in 2010.
The team was thrilled to have doubled
their original target by raising over £6,000.
Carl said: “It was one of the best days
of our lives, it’s a great thing to do and
we’re so amazed by the generosity and
support received - a massive thank you to
everyone!”
They joined 80 other brave ‘mudders’
who made a huge impact in 2013,
together raising over £53,000 to help
people affected by MND. Thank you.
Our Community and Events Fundraiser,
Esther Fifield, said: “There is a variety of
tough challenges out there and we have
seen them steadily rise in popularity. This
could be due to the relatively low-costs
involved in taking part and that those
Janet , Elaine , Jonny, Ant, Angela and Carl.
brave enough to take on such a challenge
find they can often attract more in
sponsorship. Or it could just be down to
the fact that these events are such great
fun to take part in!”
To find out more, visit:
www.mndassociation.org/extreme
For a fundraising pack call
Alanah Gelling, on 01604 611691 or email
alanah.gelling@mndassociation.org
Because fighting MND is personal
We understand that for many of our supporters, when it comes to fighting MND, it’s personal
Our Tribute Funds and Fightback
Funds, provide a focus for individuals to
contribute in their own way
to the raising of muchneeded funds at a time to
suit them.
Every pound raised for
our MND Association Tribute
Funds is recorded as a
tribute to the person after
whom the Fund has been
named. Similarly, anyone
can pledge (promise) a
legacy to a Tribute Fund
with the value of the
eventual gift included in the
Fund’s total.
Supporters are regularly updated on the
Fund’s progress and there are a number of
optional services. For example, a Tribute
Fund can have its own website where
friends and family can leave messages,
memories, photos, video clips and music
and donate securely online. A website
may also be featured in our online tribute
garden.
Maria Varnava, Guardian of the Solomon
Ferekkides Tribute Fund said: “Dad’s
Tribute Fund provides a vital positive
focus, bringing everyone together for a
common cause.”
For people living with
MND, we have created our
A tribute
‘no frills’ Fightback Funds.
to someone
The sole purpose is to raise
special
money for the Association
to use wherever the need
is most urgent. Unlike a
Tribute Fund, a Fightback
Fund is not required to
bear a person’s name and
can be called whatever
their creator wishes. A
monthly email to the
Fund’s creator keeps him/
her up to date with the fundraising total.
More information and an application form
can be found in the Fightback Fund leaflet
enclosed with this edition of Thumb Print.
Both Tribute Funds and Fightback
Funds can accept gifts by: cash, cheque,
credit and debit cards, direct debit and
payroll giving. Donations can also be
accepted from event sponsorship pages
set up on sites like JustGiving or Virgin
Money Giving.
Stephen May, our Tribute Funds and
Fightback Funds Manager, said: “Since
2004, the generosity of Tribute Fund
supporters has made an enormous
contribution (over £6.2 million) to our
fight against MND. Our grateful thanks
to them and to the supporters of our
Fightback Funds, for all their fundraising
efforts to date and we hope in the future,
so that we will one day achieve our vision
of a world free from MND.”
more information
www.mndassociation.org/tributefunds
www.mndassociation.org/fightback
See the Fightback Fund leaflet enclosed
with this edition of Thumb Print
or contact Stephen May
Telephone: 01604 611865
Email: stephen.may@mndassociation.org
Please note that money raised through Tribute
Funds and Fightback Funds is for the ongoing
use of the Association. They are not for the
raising of funds for the sole use/support of
an individual, nor are they a kind of savings
account for the later purchase of a specific
product or service.
news
Christmas appeal
strikes a chord
We have been hugely moved by the
response our Lighting Up Lives Christmas
appeal featuring Eric Rivers, and of course,
Eric himself is delighted. He’s such an
inspiring man, and his Christmas message
clearly struck a chord with our supporters.
We can’t yet stop MND but we can
ensure that we are here to lend support,
advice and practical help every step of
the way. Your generosity will help us
continue to provide vital support from
custom wheelchairs and communication
aids to home adaptations, so families like
Eric’s can live normal lives for as long as
possible.
Ultimately, of course, we want to make
this disease a thing of the past. Your gifts
help us accomplish this by funding worldclass research into MND. The pace of
discovery is accelerating and the secrets
of the disease are slowly being revealed.
On behalf of Eric Rivers, his family, and all
of us at the MND Association – thank you.
The amount raised as of 17 January was
£136,000. There’s still time to donate,
simply call 0845 3751850 quoting 13NV or
visit www.mndassociation.org/Christmas
Sir Chris signs Charter
Sir Chris
Bonington,
one of Britain’s
best known
mountaineers
and explorers,
signed our
MND Charter
when he
attended
our annual
Research
Dinner in
London, see
page 17.
Sir Chris’s wife Lady Wendy has MND. He
said: “Wendy and I are very lucky to have
a lot of support where we live in Cumbria,
but it’s only fair that people with MND can
access advice, information and assistance
when they need it and regardless of
where they live. I urge everyone to sign up
to the MND Charter”.
Young mascots’ ace day out
Imagine being given the chance to meet
some of the biggest names in tennis, at
one of the biggest events in the sporting
calendar.
That is exactly what happened to
35 children from across the UK, who
were nominated by our members to be
mascots at the 2013 Barclays ATP World
Tour.
The mascots, all touched by MND,
led out some of the world’s biggest
tennis stars including Roger Federer,
Novak Djokovic and Rafael Nadal, at the
prestigious event held at London’s O2
Arena in November.
We were invited to put names forward
for the honour, following the death of
Brad Drewett, a former player, executive
chairman and president of the ATP World
Tour who died from MND in May, aged 54.
The event trophy was also renamed in his
honour.
Six-year-old Eilish Larkin of Newry,
Northern Ireland, whose father Eoin has
MND, was paired with, Roger Federer.
Eilish’s mother, Claire said: “Eoin, was
diagnosed with MND in August 2010
when Eilish was just three. She is the
youngest of our three children and they
are all very aware of Eoin’s needs and they
all give him the very best of attention
and care, as he needs a lot of help with
everyday tasks.
“Eilish had a fantastic time from the
minute we left to the minute we came
home. It was all go, but she took it all in
her stride and I think part of this comes
from coping so well with her Dad.”
Eight-year-old Indie Wells from
Southend-on-Sea, Essex was paired with
the eventual champion of the event,
Rafael Nadal. Indie lost her father Dave to
MND in 2011.
Her mother Lynee said: “Indie enjoyed
her day very much. She said she was very
proud to represent the MND Association.
Her grandma was in the audience and
her entire extended family were watching
on TV, including her uncle who lives in
Canada - we were all so proud.
“We received so much help from the
Association to help make Dave’s life easier.
It gave a little girl who had lost so much a
fantastic day that money cannot buy and
a memory connected to her dad that she
will never forget.”
Awareness film scoops BAFTA
Our 2013 Awareness Month film I Am
Breathing has scooped a Scottish BAFTA
for directors Emma Davie and Morag
McKinnon. The film was shortlisted in
three categories at the British Academy
Scotland Awards in November.
Meanwhile, the film received a great
response at a special Westminster
screening for parliamentarians co-hosted
by Baroness Royall and Gavin Williamson
MP, chair of our All-Party Parliamentary
Group on MND.
The powerful documentary tells the
story of Neil Platt, who was just 34 when
he was diagnosed with MND. Neil wanted
to leave a message for his young son
Oscar and also raise awareness of the
disease. The film was shot in the final
few months of Neil’s life in 2009 by the
Scottish Documentary Institute and
premiered at the Edinburgh International
Film Festival this June.
After the screening at the Palace of
Westminster, Neil’s widow, Louise spoke
to the invited guests about her personal
experience of MND, the filming process
and answered questions.
More than 1,500 people emailed their
MP encouraging them to attend the
screening, the highest ever response to an
Association-led MP e-action.
We look forward to sharing news of
our June 2014 MND Awareness Month
campaign with you soon.
news
All star cast support
King Lear readings
Lots of support for
auction
Work starts on NICE
guideline
Eminent stage and screen actor Joss
Ackland performed two readings of
William Shakespeare’s King Lear in support
of the Association.
Joined by an all-star cast, the 85 yearold took on the role at the St James
Theatre,
London and
The Old Vic,
London in
September.
Joss, an
Association
ambassador,
lost his wife
Rosemary to
MND in 2002.
Joss Ackland
The idea for
staging the special performance came
from Lisa Paterson following the death
of her script-writer and theatre director
friend Ranald Graham.
Our thanks to Joss and Lisa for
delivering the two readings, which raised
some £27,000 to support our work.
Thanks to the support of the Sky News
presenter Charlotte Hawkins, a silent
luxury holiday auction has raised
thousands of pounds for the Association.
The 22 lots ranging from trip to India
to a golfing holiday in Scotland were
advertised in Ultratravel Magazine; a
special Telegraph supplement published
with the newspaper in September for
readers in London and the South East.
More than £37,000 was raised from the
winning bids.
Charlotte’s Dad was diagnosed with
MND two years ago. She said: “The
MND Association has been one of the
organisations that have helped my Dad –
offering advice and support, and lending
much-needed equipment as his mobility
deteriorates.
“We’ve also relied on their website for
advice and information.”
Following several years of campaigning,
supported by our members, work has now
started on national guidance for MND.
This will be the first ever official guidance
for MND and is a tribute to the hard work
of members and supporters.
The National Institute for Health and
Care Excellence (NICE) will be developing
the guideline and is recruiting clinicians
and people affected by MND to sit on the
development group. As Thumb Print went
to press we were due to hear if we had
been successful in our application for a
seat on the group.
NICE has also been consulting on the
scope for the guideline and we submitted
comments on its draft proposals. Our
main concern was that diagnosis and
social care – help with getting up,
washing and dressing – were omitted
from the scope.
The guideline is due to be published
in February 2016. We will alert members
to opportunities to comment during its
development.
from our chair
It’s great to hear of the record numbers
attending our 24th International
Symposium. The research interest
that this suggests gives us great
encouragement. Thank you to our
team for organising and managing this
complex, vital event. Its establishment
and development over the years as the
premier event for networking MND
research reflects great credit on the
Association.
Following the retirement of Victor
Patterson from our Board of Trustees
we have been seeking a neurologist
to join us. I’m delighted that we have
been able to recruit Adrian Wills as a
Trustee. He leads our care centre in
Nottingham, has long experience of
supporting people living with MND and
has valuable contacts in commissioning
NHS services.
With a new strategy agreed we must
press ahead to make its ambitions
realities. One of the critical
See page two to find out how you can
bid for a luxury holiday.
elements will be the development of
stronger links between our volunteers
and our paid workforce across every
part of our activity. Our chief executive
has reorganised the responsibilities of
directors to allow the establishment of a
senior post focused on volunteering. We
will also be reviewing all our operating
arrangements to ensure that we
empower branches and groups while
retaining the key systems that allow us
to work as a unitary charity.
Our financial year is ending with the
Association in a much stronger position
than the Trustees had anticipated.
We have recently received a number
of extremely generous bequests. The
Board will need to consider how we
should manage this very welcome
position. Some donations are tied to
particular parts of our work and, of
course, legacy income can be volatile
so planning ongoing expenditure on
the basis of large single donations is
unwise. We are,
nevertheless, able
to consider further
growth. Part of that
growth must be put
towards ensuring
that we can sustain
a higher level of
income generation.
We must target our spending on
where the Association can add most
value to the services people living with
MND now rely on, and on balancing
our research portfolio between the
search for causes and eventual cures
or prevention and the development of
better care technologies and therapies.
The Board of Trustees met in
October and approved six studentships
totalling around £548,000 over four
years. Read more Board news at www.
mndassociation.org/boardreport
Mark Todd, Chair, Board of Trustees
news
First television advert reaches millions
Partners enjoy tour
Our first ever television advert to raise
awareness of MND made its impact during
December in homes across England,
The advert, featuring TV presenter Nick
Knowles and Eric Rivers who has MND,
was broadcast on popular TV channels
including ITV3, Gold and Good Food.
It was also shown at cinemas thanks
to the support of specialist advertising
contractors, Pearl & Dean – and seen by
one million cinemagoers.
The advert included a text-to-donate
request and as a direct result, more than
450 texts were received.
Its creation is thanks to a very special
friendship, which first began when the DIY
SOS team, led by Nick Knowles, surprised
the Rivers family in 2011 and gave their
home a makeover.
Nick said: “Eric is about the bravest
and most honourable man I know. It’s an
honour to work with him to bring this
terrible condition to the attention of a
greater audience.”
Supporters of our Oxford Centre for MND
Research and Care have witnessed first
hand the difference their generosity makes.
Our Oxford Partners, and other donors,
were welcomed at the centre by our Chief
Executive Sally Light, who thanked them
for their generosity in helping to fund the
centre’s work.
The guests heard presentations on
current research from Prof Kevin Talbot,
Professor of Motor Neuron Biology and
Co-Director of the Oxford Centre for MND
Research and Care, and care activities
from Rachael Marsden, Advanced Nurse
Practitioner and Care Centre Co-ordinator.
They emphasised the importance
and benefits of delivering care and
undertaking research in a co-ordinated
way. The guests toured the laboratories
and hospital facilities.
Our 21 Oxford Partners have each given
more than £1,000 to support the centre’s
vital work. To learn more about our Oxford
Partners, contact Ian Gardner, Head of
Development, on 01949 831912.
Nick Knowles and the production team with Eric
Eric said: “We all wonder at times to
ourselves - what can I do to make a
difference in this world? Well sometimes
it’s the simplest things we do that make
the biggest impact.”
The advert also made its mark on our
social media channels. The news of its
launch was shared with our friends and
followers, and for the first time, we used
social media advertising to reach tens of
thousands of people who may previously
had no knowledge of MND or the work of
the Association.
Unveiling new wheelchair designs
We are working with manufacturers to
develop wheelchairs better suited to the
needs of people living with MND and
other neurological conditions.
We hosted two interactive workshops
(in London and Coventry) where major
manufacturers received feedback from
people living with MND, occupational
therapists, service managers, engineers
and physiotherapists.
The project, funded by a grant from
the Department of Health, will extend
our Oxford services. The new chairs will
better adapt to the often rapidly changing
needs of people with MND; incorporating
Our interactive workshop in London
communication and environmental
aids and should be available from local
wheelchair service providers.
Project Manager Pauline Matheson said:
“We have also been working to develop a
specialist ‘neurochair’.
“It was a great opportunity to get
everyone together to discuss how small
changes to existing designs could make a
huge difference for people living with MND.”
Jenny Rolfe MND Specialist
Occupational Therapist, is on the project
board. She said: “There are many barriers
to people getting the right wheelchair
for their needs at the moment. Our chair
should be compact enough to fit around
a home environment and be able to be
driven outside too.
“Powered wheelchairs need to
maximise independence, voice and
choice. While everyone is different, there
is a common need for a chair that can
evolve as the requirements of the person
living with MND change.”
Liam Dwyer was one of the people
living with MND who attended. He said: “I
have done more than 6,000 hours in my
wheelchair in the past three years. It was
great to be involved in the day.”
Honour for MND
researcher
Congratulations to leading MND researcher
Pam Shaw, professor of neurology at the
University of Sheffield, who was recognised
in the 2014 New Year’s Honours for
services to neuroscience and made Dame
Commander of the British Empire.
Prof Dame Shaw
is the director of the
Sheffield Institute
for Translational
NeuroScience
(SITraN), a purposebuilt centre for
cutting-edge
research projects
Dr Brian Dickie,
our Director
Prof Dame Pam Shaw
of Research
Development said: “Pam has been at the
forefront of international MND research for
more than two decades. She has always
combined research with a tremendous
empathy for patients and their families.
“Pam is one of the finest minds we have
working on MND research and continues
to play a pivitol role in our vision of a world
free from MND. This national honour is a
fitting and a well-deserved tribute.”
down your way
thank you
to all those who raise vital funds and awareness to
support our work. Here is a small selection of recent
events – share your pictures on our facebook page
www.facebook.com/mndassociation
‘Orang’-ing about: Our
MND orang-utan is waving the
awareness flag as he accompanies
Christina Pendleton, secretary
of the Birmingham and Solihull
Group, on her global expedition.
They have seen the world’s
oldest jungle in Malaysia, the
world’s oldest temple in Thailand
and the Sydney Opera House in
Australia, among other fascinating
sites.
What a cultured little orang-utan!
‘Old Skool’ style:
£3,000 was raised by
a group of football
enthusiasts at a five-aside footy game and ‘Old
Skool’ party last summer,
in honour of Hector
James, who recently lost
his battle with MND.
Hector increased
awareness, especially
within the AfroCaribbean community,
and raised funds for
research and care.
Balled over: A charity ball, held to raise money
for the Northamptonshire Branch, proved to be
a glittering success, raising over £1,900. The ball
was organised by Rosie Lloyd, whose skills as a
professional event organiser came into their own.
Rosie said: “I took on the challenge of
organising the ball in memory of my grandfather,
who passed away on Christmas Day 2012 from
MND. The support for the event was phenomenal,
in particular from local businesses who kindly
donated the venue, food, entertainment and
raffles prizes.”
Race for mum: Debbie Dawson,
her brother Murray Boxall and
brother-in-law Andrew White, ran
the Coniston 14-mile race in memory
of their mum Gywenth, who died
from MND in 2013. Debbie said: “The
race was tough but we had a great
time. We proudly wore our MND
Association T-shirts with a picture of
mum on the back, which prompted
a spontaneous £10 donation from
a spectator as we crossed the finish
line who’d lost his father to MND.”
down your way
Flying high: Stephanie Painter, Air
Squadron for the RAF at Bristol University,
raised over £1,100 in memory of a fellow
squadron’s mother, who passed away from
MND, by doing weekly bake sales and a
large ‘bake it!’ event.
Stephanie said: “We had great support
and were very honoured when the chief of
air staff attended our family day and kindly
contributed to the stall.”
Family spirit: Debbie
Brookes and family have
been outdoing themselves by
raising over £5,000 in honour
of mum, Anne Leece, who had
MND.
They have completed many
fundraising activities including
a charity fun day, a Walk
to d’feet, and bag packing
service at a local supermarket.
Debbie’s husband Ian also took
on a tough 100-mile bike ride.
Tee-up for MND: 56 golfers and
their families from the Pachesham
Park Golf Club raised over £2,300
at a Captain’s Charity Golf Day
in August 2013. Lars Holte, the
current Captain, who lost his wife
Rita to MND, said: “We are also
organising a number of smaller
events during my year as Captain,
so would hope to add to this total
over the coming months.”
Grand a-‘fare’: Jan Jackson
found herself warm with
delight when a craft and quilt
fare she organised raised over
£1,100. The fare was to raise
money in honour of Jan’s
friend, Chris Ibbeston, who has
MND (pictured).
Glitter ball:
Alex Bunn’s
first charity ball
was a dazzling
success raising
over £8,000.
It was held in
honour of her
grandmother
who died from
MND when Alex
was just three
years old.
Alex said:
“I have been
overwhelmed
by everyone’s
support and
the fantastic
amount of
money raised.”
Howzat!: Gordon Molyneux’s cricket team played a charity
match last autumn, in honour of his recently diagnosed brotherin-law, Dean Mucklow. The match raised almost £1,500.
Gordon’s wife, Claire, has also been helping to raise funds, and
awareness, by displaying MND noticeboards and collection tins
at the dental practice where she works.
down your way
Team exodus: After hours of hard work and graft to lose weight
and inches, a team from the Exodus Training Academy put their new
found agility and stamina to the test in a gruelling 12K Monster Run.
The combined efforts of climbing, jumping, crawling and wading
raised more than £3,100 in memory of academy founder Hubert ‘H’
Clarke’s father, who sadly passed away from MND in 2008.
It’s a winner: For the last six
years, members of the Lytham
Cricket and Sports Club have
raised money for the Blackpool
Branch at their Annual Golf
Day, in honour and memory of
Keith Cartmell, who died from
MND. This year’s event was well
supported and raised over £2,000
bringing the six-year grand total
to almost £20,000.
Sarah Harding from the
Blackpool Branch said: “We are
extremely thankful to the club for
the money they have raised for
our work and their support over
the years.”
Mutual support: Marlene Herron
and John Clough joined together to
raise awareness of MND by walking
the last 100miles of the Camino de
Santiago trail. The walk was in memory
of John’s wife, Pauline, who died from
MND four years ago, and Marlene’s
husband, Charles, who died from an
aneurysm last year.
Marlene said: “We were four bestfriends who enjoyed many long walks
together. Losing Pauline and Charles
has been a big loss to us both, but
we have been there to support each
other. Doing the walk was a wonderful
experience and we are delighted with
the money raised to help fight this
terrible disease.” Together they have
raised over £2,000.
Baker’s delight: Almost a
year to the day since Ian Squires
died from MND, his son Nick
organised a ‘bake off’ challenge
at work.
Nick said: “I love baking and
my colleagues love eating
cake. It just so happened the
anniversary of losing my dad
coincided with ‘National Baking
Week’, so it seemed fitting to
do a week long bakathon in his
memory.” Nick raised £180. Ian
is pictured with son Nick and
daughter Louise.
Loving memory: Lin
Porter raised over £130
when she bravely took
on a skydive in memory
of her father, Geoffrey
Watson, who sadly
passed away from MND
14 years ago.
down your way
Rocking raise: Members of our
Leicestershire and Rutland Branch
donned their fancy dress and
dancing shoes, as they rocked out
at a fundraising ‘tribute to legends’
concert, raising over £1,800.
Ruth Johnson, Vice Chair of the
branch said: “We had a superb
evening. The many guests rocked out
all night, with impromptu dancing
and standing ovations all around.”
Smiling faces: Thanks to the efforts of Julie Heenan,
over £1,100 was raised at a ‘Fun Evening’ in memory of
Julie’s late brother-in-law, Neil, who passed away last
April from MND.
Ruth Heenan, Neil’s wife, said: “I’d like to thank Julie
from the bottom of my heart, for her love, support and
dedication in organising the evening. We had such a
wonderful time, captured perfectly in the photo of my
niece’s little girl, Caitlin, who shows a smile can still be
worn in the face of MND.”
Striking kit: Marton FC
Royal’s U13s are raising
awareness of MND by
sporting our logo on
their new kit. The team
chose to support the
Association in honour of
player Dominic Harrison’s
granddad, Peter Wilson,
who has MND. Thanks to
the Cleveland Branch for
sponsoring the team, they
have been able to help
spread the word.
Joanne Harrison,
Dominic’s mum, said: “We
knew nothing about MND
when dad was diagnosed
so we just want to raise
awareness. We were
so delighted when the
branch said they would
sponsor the team - it
means a lot to us.”
Going for gold: 15 walkers took
part in a seven mile ‘Gold Leaf Walk’ in
Sheffield, last October. Fran Hall and
Megan Wordsworth set up the walk as
a tribute to their mum and auntie, who
both passed away from MND. The walk
raised £300 for their local branch.
Working together: The Birmingham
Local support: The South
London Branch raised £1,100 at a
FACE quiz-night last October. The
event was well attended with a
special guest appearance from local
politician Sadiq Khan MP. Mr Khan
is pictured with group members
Andy Pape and Sarah Tucker.
and Solihull Fundraising Group has been
hard at work taking part in fundraising and
awareness raising activities, organised by the
Dorridge Fun Run Committee. The year-long
activities have included a Christmas Carol
Service, charity auction, fun run and a fun
day; collectively raising over £7,800.
Sue Curry and Linda Hadley, the Joint
Fundraising Secretaries for the group said:
“The last 12 months have been awfully hard
work, but it’s been worth the effort to see the
amount of money raised.”
your voice
diary dates
Silverstone Half Marathon
2 March
Brighton Marathon
6 April
London Marathon
13 April
London to Paris Cycle
23-27 April and 7-11 May
Plymouth Half Marathon
27 April
Super Hero 5k/10k
18 May
Follow us @MNDAssoc
Talking about the MND Association on Twitter
@JenniSaysJump: Congrats to Professor Pamela Shaw on her New Year’s
Honour. Her research on #MND is incredibly important. #sheffieldissuper
@MNDA_Merseyside: Thanks to every single person who has been part of
our special 30th anniversary year. We can announce we raised £40,000. #wow!
@RachaelSmith89: So happy to see the advert for @mndassoc at @
ShowcaseCinemas. Finally some much needed awareness for #MND.
@sshots: My daughter has just raised £100 for @mndassoc carol singing.
She’s only 11 and decided to do it off her own back!
@KieranBooker: Let’s hope 2014 is the year we find a cure for #MND. For @
mndassoc and in memory of people like my mama.
Edinburgh Marathon
25 May
London 2 Brighton 100k
24/25 May
Nightrider Cycle Challenge
7/8 June
UK 3 Peaks Challenge
Various dates
May – September 2014
Tough Mudder
Various dates
April – October 2014
Walk to d’feet MND
All year round
Spring Conferences:
29 March – Uckfield, East Sussex
6 April – Newport, Wales
10 May – Manchester
11 May – Durham
18 May – Kettering, Northants
get involved:
telephone: 01604 250505
website: www.mndassociation.org
email: enquiries@mndassociation.org
We would love to hear from you
If your letter is printed on these pages
we will send you an MND Association
coin keyring.
Please provide your full address with
your letter (this will not be printed).
Write to: Your Voice, Thumb Print,
PO Box 246, Northampton NN1 2PR or
No time to paws for busy bear
Maria Watton’s little friend Amanda Charter
Bear, or ‘aMaNDA’, raises awareness of
MND by travelling around the world with
our Charter in hand. Here she shares her
adventures from 2013:
What a year it has been! 2013 kicked off
in London visiting Eric Rivers and his lovely
family. It snowed deep and crisp which was
wonderfully exciting for us all.
Then in preparation for my biggest
adventure of the year, I got sorted with my
pet passport from vet John in Dorset then
set off to Telford. Ben Lannie and I, with
nerves running high, packed up and set
off for Everest! Treking upwards with snow
under foot and low oxygen levels we made
it and I was still smiling from my vantage
point in Ben’s orange backpack.
On our return to the UK we were greeted
with chocolate cake for a rebuild of energy
and joyous Easter celebrations. Thank you
Ben, for including little me in your amazing
adventure.
Holidays have been abundant this year.
I have been to Wales, Israel, Ireland, Florida
and Cuba twice!
Andy Quick’s skydive at Old Sarum
Airfield made him quiver like a jelly but
also set up JumpFest 2014 MNDA that
involves 30 plus jumpers, can’t wait as this
time I will join them in diving too!
‘Lighthouse to Lighthouse’ run in
Australia and ‘You and Me V MND’ cycle
ride in South Africa have given me the
chance to link hands globally against MND.
I was also lucky enough to meet with
HRH The Princess Royal at a reception in
support of the Charter in May. My small
paws are crossed for more to follow from
this in 2014.
The last event of the year was the Boxing
Day swim in Llandudno, the dip was a
good way to finish off the year promoting
the Charter and creating new links. If you
have an event, find me on Facebook and I
may be able to join you!
your voice
Poet Byron pens tribute
After losing his father Russell to MND in
2012, 21-year-old Byron Brown from Surrey
decided to remember him by writing a
poem.
Byron’s mother, Shelley said: “Russell did
so much with the boys such as football and
skiing, he really was like Action Man and
spent so much time doing activities.”
Russell sadly died in September 2012
about us:
and Shelley said that
one night Byron had
woken up thinking
about his father and
decided to write the
poem.
Russell Brown
She said: “It seemed
quite an unusual thing for a 21-year-old to
do, but I thought it was wonderful.”
The Motor Neurone
Disease (MND) Association
We improve care and support for
people with MND, their families
and carers, and fund and promote
research that leads to new
understanding and treatments.
We also campaign and raise
awareness so the needs of people
with MND and everyone who
cares for them are recognised and
addressed by wider society.
As a charity we rely on voluntary
donations. Our vision is a world
free from MND.
A poem for my Dad
Father, you were my idol,
So strong, so kind and true.
And I will try my very best,
To be the same as you.
A thoughtful, gentle, giving man,
To all whom you held dear.
Reflected by how many friends,
Who now shed you a tear.
We helped, we hoped and watched
you fight,
This wrong, and great unjust.
And through this I admired,
You’re faith in you and us.
Battling through and through and
through,
just like you always did.
To get back to your brilliant self,
and hoped your curse you’d rid.
Poem brings comfort
Carol Walker, from Weston-super-Mare,
wrote this poem after her mum died from
MND. The poem has brought her great
comfort.
Light
A breeze blew past the hillside, But lingered on the slope, Where laid some lowly flowers, Filled with the bearer’s hope Of a meeting in the future – Who knows the time or place, At which two hearts will mingle, And there will be the face Of a loved one, dear departed, Who went to God’s good grace. So shine on us kindly light And illuminate our way To where the heart is peaceful And where only angels play.
You demonstrated strength,
Like I have never seen.
We only wished to see you fixed,
It was our every dream.
But now I know you rest in peace,
Smiling down on us.
And have no worries... no fear... no more,
Your legacy shall not rust.
Website
For as you know we’re all strong too,
And that we learnt from you.
That’s one reason I now know,
not to feel so blue.
www.mndassociation.org
Social media
Online forum
A safe place for people affected
by MND to share experiences
and support each other with
the challenges of living with the
disease.
http://forum.mndassociation.org
Since then on in, we have remembered,
The way you lived and flourished.
I hope you always feel our love, and once
again are nourished.
RIP Dad, you mean the world to us.
Facebook
www.facebook.com/
mndassociation
Our 2014 Spring
Conferences
MND Connect
Our MND Connect helpline offers
advice, practical and emotional
support and directing to other
services and agencies.
Uckfield, East Sussex – 29 March
Newport, Wales – 6 April
Open Monday to Friday 9am to
5pm and 7pm to 10.30pm.
Manchester – 10 May
Durham – 11 May
Kettering, Northants – 18 May
Learn more about MND, meet
others affected by the disease
and find out what’s new in MND
care, research and campaigning.
mndconnect@mndassociation.org
Membership
Find out more and register online
at www.mndassociation.org/
springconference
To receive a regular copy of
Thumb Print, call 01604 611855
or email membership@
mndassociation.org
Follow our Spring Conferences
on Twitter – #mndsc14
Affected by
motor neurone disease?
Access to help is closer than you think
Telephone
08457
626262
Just diagnosed? Living with MND?
Need on-going support? Need carer information?
MND Connect is more than just a helpline
H E L P · I N F O R M AT I O N · S U P P O R T
9am
08 thumb print Winter
2014 to
5pm and 7pm to 10.30pm Monday to Friday

Here - Sheffield MND Research Advisory Group

Transcription

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