Winter 2015 - MND Association

Transcription

The magazine of the Motor Neurone Disease Association
Winter 2015
Star quality
Film puts MND in the spotlight
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4
The Theory of
Everything
Film puts MND in the spotlight.
6
Marking Symposium
success
News from our global research
conference.
8
Fighting back through
fundraising
Three inspirational individuals.
10
Improving wheelchair
services
Opening our third specialist centre.
12
Your stories
Sharing experiences of MND.
18
Meet our champions
Our General Election campaign.
22
A matter of choice
Understanding ventilation.
29
Ice Bucket windfall
Your views.
Cover: Our Patron Prof Stephen Hawking with
actor Eddie Redmayne at the London premiere of
The Theory of Everything.
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…
The arrival of 2015 marks my second
anniversary as Chief Executive of
the Association, a position I feel very
privileged to hold.
Without doubt there is one
overwhelming highlight from the last 12
months – the Ice Bucket Challenge.
The £7 million this social media frenzy
raised towards our work is already making
a difference. It is enabling us to drive
progress even faster and further than we
imagined when we developed our current strategy in 2013.
We have already brought forward a number of research and care projects
and this month our trustees will consider proposals for spending the
windfall, informed by the 2,000 members who responded to our survey.
See page 29.
But it’s not just the $200 million US dollars raised around the world that
really sticks in my mind, it’s the groundswell of support in the UK and across
the globe coupled with something money can’t buy: hope.
In December I travelled to Brussels for our annual International Research
Symposium. The research presented in the formal presentations and poster
sessions was impressive and showed encouraging progress in many areas
(see pages 6 and 7).
But networking and informal conversations were just as valuable, with
researchers speaking enthusiastically about the impact the Ice Bucket
Challenge has had on their work around the globe.
I am immensely proud that we organise this world-renowned event.
While I can’t promise another social media phenomenon, we will find
new and creative ways of making a difference for people affected by MND.
For example, the recently-released film The Theory of Everything, based
on the diaries of Prof Stephen Hawking’s wife Jane, has again put MND in
the spotlight with a global audience. Our dedicated volunteers pulled out
all the stops to maximise this opportunity to raise awareness and funds at
local cinemas. See page 5.
It is important to remember the Ice Bucket Challenge was only one part
of what you all achieved last year and I thank each and every one of you for
the many ways you continue to support our work. Your commitment never
ceases to amaze and inspire me.
I know 2015 will be another successful year as we strive to move ever
closer to our vision of a world free from MND.
Thumb Print is available as a pdf at
www.mndassociation.org/
membership
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
thumb print Winter 2015 03
feature
Actress Felicity Jones, right, with Jane Wilde
Box office hit puts spotlight on MND
MND is once again in the global spotlight
thanks to an Oscar and Bafta-nominated
box office hit film which explores the
relationship between our Patron, Professor
Stephen Hawking, and his first wife Jane.
The Theory of Everything, released on
New Year’s Day, is a biographical romantic
drama based on ‘Travelling to Infinity: My
Life with Stephen’, written by Jane Wilde.
It focuses on the challenges of being
a carer and partner to someone with a
progressive condition.
The film’s star Eddie Redmayne is
nominated for a multitude of awards
and has already scooped a Golden Globe
for his role as
the renowned
astrophysicist
while Felicity
Jones’ portrayal
of Jane, has also
been widely
acclaimed.
Our volunteers
around the
country made
The Hawking family in the 1970s
the most of an
opportunity to use the film’s launch to
raise funds and awareness.
Prof Hawking was diagnosed with MND
aged just 21 while studying at Cambridge.
04 thumb print Winter 2015
Now aged 73, he is recognised as one of
the world’s greatest minds.
Communications manager, Emma Johns,
has been advising the film’s set designers
and production teams since July 2013.
She said: “We had a call from the set
decorator who was working closely
with the film designer and looking for
contemporary care equipment or aids and
specifically wheelchairs from the 1960s to
1980s. Using original family photos and
thanks to specialist wheelchair services
and engineers across the country, we were
able to help.
“It was clear very early on that the
depiction of MND
would be as accurate
as possible on all
levels. This is why it
is such a fantastic
tool for spreading
awareness and such
a powerful film too.”
This attention to
detail was something
echoed by the actors’
approach too. Eddie
and Felicity spent time with people living
with MND and their carers thanks to the
support of North London and North West
London branches and Queen’s Square,
Eddie Redmayne signs autographs at the premiere
the National Hospital for Neurology and
Neurosurgery.
In an interview with the Guardian Eddie
said: “A massive part of portraying Stephen
was learning about MND. Finding humour
and optimism in the most extreme of
circumstances was certainly perspectivegiving.”
Felicity explained the challenges of the
role.
“You are a husband and wife and what I
found difficult was that it quickly becomes
nurse and patient,” she said. “Constantly
these people are trying to maintain their
relationship and the affection they first
had when they met each other, but quickly
the boundaries become blurred.”
feature
Our volunteers enjoy the Leicester Square premiere
They also met consultant neurologist Dr
Katie Sidle, MND clinical nurse specialist
Jan Clarke and other staff including a
speech and language therapist.
Jan said: “The film is great and the actors
really did their homework. It’s amazing
how Eddie managed to portray the
disease. With the permission of patients
he attended the clinic every week for five
months and Felicity also came along to
some sessions.
“Eddie is such an understanding and
sensitive young man and he really fitted
in at the clinic. Patients were happy to
talk to him and show them how MND was
impacting on them. Most people like to
tell their story.
“We know a lot of problems stem from
the fact that so few people have heard of
MND, so we are all delighted that this film
is raising the profile. Eddie has spoken
about people with MND in all of his media
interviews.”
We were given the opportunity to
invite volunteers and guests to the film’s
premiere in December at Odeon Leicester
Square ahead of the general release.
Prof Ammar Al Chalabi, Director of the
King’s MND Care and Research Centre,
was among those who attended. He said
treatment and diagnosis are very different
today from that depicted in the film.
“The acting was superb. If Eddie
Redmayne had come to my clinic like that I
would have thought ‘this is MND’.
“His posture, body movement, limb
movement, neck weakness, speech,
swallowing, all were exactly what one
would expect neurologically. Even the
exaggerated reflexes looked correct, which
can be a very difficult thing to mimic
convincingly.”
The film is great and the actors
really did their homework. It’s
amazing how Eddie managed to
portray the disease.
After meeting Eddie at Queen’s, Glenn
Phillips, one of our members who has
MND, agreed to the actor visiting his
Bushey home. He said: “Eddie was so thorough and
scrutinised everything I did in detail. “It was riveting to see his performance,
and to see some of the scenes we’d
discussed on the big screen was
fascinating, albeit tinged with melancholy.
It captured a moment in my life that
haunts me and always will. I wouldn’t
hesitate to do it all again. “As a film graduate and a teacher for
many years I was intrigued to see part of
the film-making process de-mystified in
this way and to be part of this was very
important and exciting for me.” With Association Ambassador Benedict
Cumberbatch also Oscar and Baftanominated it’s an exciting time! Keep up
with our latest celebrity news on Twitter
@mndvipteam
Bucket collections
Our Northampton Branch collect at Cineworld
Thank you to our branches and groups
who joined forces with local cinemas to
organise awareness stands and bucket
collections across England, Wales,
Northern Ireland and the Channel Islands.
The UK’s second biggest cinema chain,
Cineworld, agreed that we could collect in
the foyers of their cinemas.
A fantastic total of 75 collections took
place with many other cinema chains
involved including Picturehouse, Odeon,
Vue, Movie House Cinemas and Empire.
Chris Wade, our Director of Engagement,
said: “It was a great opportunity for our
members to share awareness of MND, and
it all came about thanks to our volunteers
on the Isle of Wight and in Shropshire.”
Thanks to the ongoing support
and generosity of cinema advertising
contractor Pearl and Dean, our 60-second
advert featuring TV presenter Nick
Knowles and Eric Rivers, who has MND,
was also broadcast at some screenings of
The Theory of Everything.
Felicity’s portrayal ‘couldn’t be bettered’
When the film’s production team was
looking for people who had experience of
being a wife and carer to speak to actress
Felicity Jones, Brigid Philip’s name was put
forward by Caroline Macdonald from our
North London Branch.
Brigid was married to Michael Kelly who
had MND and died in 2011. She is the
branch’s newsletter editor.
She agreed to meet with Felicity who
visited her at home. She said: “I thought
it was worthwhile doing because people
need to understand how people with MND
need help from every direction in ways
that you can’t even imagine.
“People have no idea what it is like to
care for someone with MND and those
of us that do – well we can make a huge
difference.
“We talked about what it is like to be a
wife in that situation and how it must have
been desperate for Jane at that stage in
their relationship and with young children
to look after too. We looked at some
specific details such as how I coped when
Michael had a choking incident.
“Like Stephen, my husband was a
mathematician, and he focused on
solutions. There were no dramas; we got
on with it on an even keel and it was just
business
as usual,
as much as
possible. I
imagine that
was what it
was like for
the Hawkings
too.
“Felicity
seemed to
Brigid and Michael
me to get the nub of the matter really well,
and responded to the script just as I would
have hoped. I thought that she did very
well - couldn’t be bettered.”
research
Marking the success of our
25th Symposium
Around 900 researchers
attended our 25th
International Symposium
on ALS/MND held in
Brussels, Belgium.
The Ice Bucket Challenge
and the awareness it
raised of MND, both with
the public and worldwide
research community, was
evident in the buzz
around the event, from
5-7 December.
Association-funded researchers chose our
International Symposium to reveal they
are a step closer to creating a diagnostic
test for MND, thanks to the participation
of people with the disease.
There is currently no diagnostic test
for MND. This means that other diseases
have to be excluded first before a clinical
diagnosis can be made by a neurologist –
which can sometimes take several months.
An effective ‘biomarker’ for MND
would change this. A biomarker is like
a biological ‘fingerprint’. It could be
something specific in the blood that
could potentially be used to develop a
diagnostic test for MND, or to monitor
disease progression.
Association-funded researchers Dr
Martin Turner, University of Oxford, and
Dr Andrea Malaspina, Queen Mary’s
University of London, presented results
of their joint biomarkers research at the
symposium.
They have found a potential trait for
MND that can be detected in a blood
sample. Importantly the researchers have
found that this biomarker increases with
disease progression, making it an ideal
marker for monitoring future clinical trials.
Dr Turner said: “Neurofilaments are the
building blocks of each and every nerve
and are thought to accumulate in the
spinal fluid (crossing over into the blood
too) as nerves degenerate across a range
of conditions. We have found them to be
raised in people living with MND.
“Even though this finding in itself is
not unique to MND, importantly the level
seems to reflect an individual’s speed
of disease progression. What my group
has been able to show is that this level
can be directly linked to the damage we
see in the motor tracts using the MRI
scanner. It confirms that neurofilaments
are objectively linked to the disease
process in MND, and is a strong
candidate for a workable biomarker that
we might even be able to measure using
only a blood test.”
Dr Malaspina said that without the
participation of people living with MND,
this research would not have been
possible.
He explained: “The enthusiastic
participation of patients in our ALS
biomarkers study has been a real catalyst
for our research. I’m humbled by the
degree of insight patients have shown in
understanding the nature and potential
impact of our research.”
research
From the Symposium
to your sofa
Sally Light
Brian Dickie
Kevin Talbot
Ammar Al-Chalabi
Barney Bryson
Sally Light, our Chief Executive:
“It was great to hear all of the science and to hear people connecting with colleagues
from around the world and making links with their various pieces of work. But what
it’s fundamentally about is finding a cure for ALS/MND and that is the thing we must
always keep in the forefront of our minds. The last speaker really summed it up for me
when he said ‘it’s great that this is the 25th Symposium but we must make absolutely
sure that there is never a 50th.’ ”
Brian Dickie, our Director of Research:
“We have been looking for biomarkers of this disease for a long, long time and work
coming out now that suggests we are starting to get there is really exciting. It was a
collaboration from two of our research labs, in London and Oxford. They are sharing
their samples and sharing their expertise and beginning to deliver.
“The researchers both said we could not do this without the patients’ participation, it’s
absolutely essential.”
We brought the latest research news back
from our Symposium almost instantly
through digital and social media.
In 2014 our blogs and Twitter feeds
reached 4.4 million people around the
globe – up from 324,953 in 2013, so that’s
13.5 times more. There were:
• 2,902 tweets, with 161 from
@mndresearch
• 341 Twitter accounts tweeted with the
hashtag (#alssymp)
• More than 10 live blog reports.
Prof Kevin Talbot, Director of the Oxford MND Care and Research Centre:
“One of the striking things from this year’s Symposium is the number of different
therapies that are emerging… We are heading in a direction where we are going to
have therapies coming in to the clinic that have much more chance of working.”
Prof Ammar Al-Chalabi, Director of the King’s MND Care and Research Centre:
“For me the highlight of the year, and the conference, has been project MinE, a massive
multinational group of researchers all working together to find genetic causes of MND.
For me the only way forward is for us all to work together.”
Barney Bryson, Researcher at the Institute of Neurology, at University College London:
“I’ve found my first Symposium to be extremely rewarding. It’s an invaluable
opportunity to meet other researchers in the same field and to get an idea of the very
latest research. We also had the opportunity to meet with clinicians and care givers,
which is very important to explore the entire breadth of the field.”
Poster presentations attract large crowds
A biomedical or clinical poster is similar to an advertising poster, with researchers
presenting and discussing their work.
This year’s poster sessions showcased over 300
different topics with large crowds often surrounding
just one poster and its presenter!
Our Lady Edith Wolfson Clinical Research Fellow,
Dr Jakub Scaber, University of Oxford, said: “I didn’t
expect such an interest in my work, I ended up being
in discussions for well over half an hour – I didn’t
even get chance to remove my coat! I really enjoyed
the conference.”
The increasing quality of work presented during
the two sessions made it the highlight of the
symposium for many. Early career researchers were
also judged on their poster presentations, with two
researchers winning the scientific and clinical poster
prizes respectively.
Dr Jakub Scaber at a poster session
Samantha Price, right, from our research team tweets with
MND Association funded researcher Matt Gabel
@euancrobertson: Heading home from
#alssymp loads of things to follow up and
digest but very worthwhile few days!!!
@NeuralOoi: Best quote of #alssymp by
John Hardy on motor neuron vulnerability
in #mnd: neurons exist at different distances
from the cliff of failure
@mndaustralia: Fabulous quote to end the
scientific highlights session ‘hope is in the
science’ #alssymp
@MeisnerNc: closing session of the
#alssymp- w.robberecht: ‘you know why its
so nice to be in ALS research? because we all
want the same thing’
@DrNikSharma: #alssymp. Well done to
@DrBrianDickie & the @mndresearch
@mndassoc team for organising such a great
conference. See you all in Orlando!
@ALSTFI: Dr Turner and Dr Malaspina’s
research is really important work! getting CSF
is harder than plasma, so finding a plasma/
blood based correlated biomarker AWESOME
It’s not too late to catch up
Visit www.mndresearch.wordpress.com or
contact the Research Development team
on 01604 611880 to request paper copies.
fundraising
Fighting back through
We are incredibly grateful to
all those who support our
work, including the many
people living with MND who
despite facing daily challenges
fight back against the disease
through fundraising. Here we
feature just three inspirational
individuals…
fundraising
Glass half full
“I’m lucky enough to have a slow
progressing form of MND – lots of others
are not as fortunate. For me that means
I really should be doing as much as
possible to raise awareness and funds
while I still can.”
Since David Setters, 57, from Redhill
in Surrey was diagnosed in 2012 his
family and friends have raised more than
£25,000 for his planned Fightback Fund
to support our work.
“I’ve called my fund ‘Sod this for
a game of soldiers – let’s fight MND’.
Let’s go for a run, a walk, a bike ride
a cake bake or whatever for the MND
Association,” he said.
“That view might be different if my MND
were more advanced and aggressive, if I
were younger and had young children, or
simply because I was a ‘glass half empty’
rather than a ‘glass half full person’.”
Last year David’s twin sons Andrew
and Robert took part in the Brighton
Marathon. His other son Mark completed
five events in the Back to the Trenches
series, long-distance adventures through
David and his supporters
David, right, in the Nutfield Village Road Race
mud, water and over extreme obstacles.
David’s local Nutfield Village Road
Race event further boosted the coffers
and regulars at the village pub have also
shown their support, including when
David’s whole family took part in the Ice
Bucket Challenge in the pub garden.
Inspired by Mark Maddox’s Football v
MND awareness campaign, in October
the family organised a tournament at
Reigatians AFC and raised £4,650 for the
East Surrey Branch.
David said: “I made my first appearance
in 1971 for the then ‘minors’ team and my
three sons are now playing in the beloved
green shirt. We had a terrific day with both
the older and younger elements of the
club taking part.”
David is a trustee of the Futures for Kids
Trust which made a generous grant to
support our information for young people.
David’s friends Andy Cook and Howard
Fine will cycle 2,710km from The Wirral to
Mojacar in Spain in April with David, his wife
Helen and Howard’s wife Sandra travelling in
the support team. Find out more at
http://cycletospain.wordpress.com
fundraising
Positive mental
attitude
Jody Kerley’s positive mental attitude was
an inspiration to all who met him.
With the support of his family, friends
and the local community, the 37-year-old
from Chatham, Kent, raised over £40,000
for the Mid-Kent Branch during his fouryear battle with MND.
This even included a pledged £10,000
donation from the band Coldplay’s frontman Chris Martin!
A lifelong fan, Jody met the band in
July after a concert at the Royal Albert
Hall. Chris sat and talked with Jody, who
also had spina bifida, before inviting him
to their gig the following evening where
he dedicated the song, Fix You, to him.
Jody’s friends and family arranged a
family fun day centred around his local
pub, the Victoria Cross in Lordswood, and
raised over £5,500. He then upped his
fundraising target to £25,000.
He organised a number of successful
Jody at his Disney-themed Walk to d’feet*
fundraising events including an Ice
Bucket Challenge and a wonderful Walk
to d’feet* MND in Disney costumes.
Sadly Jody lost his battle with MND
in October. His sister Alicia Duff said: “It
has been a very tough time for us all, but
knowing Jody is no longer suffering is
some consolation to us.
“We are going to continue to raise
money for the MND Association as we
know this is what Jody would have
wanted.”
Channelling energy into raising funds
A super-fit sportsman all his
life, Kim Manns competed at
a high level in football and
cricket.
But since a diagnosis of
MND two years ago, he has
been channelling his energy in
a different direction – raising
funds to support our work.
The 61-year-old from
Portsmouth recently
organised his second
successful golf charity
tournament at Waterlooville
Golf Club.
Kim said: “Many people that
could not get in last year’s
Kim Manns has organised two golf days
event heard what a fantastic
The Captain and Lady Captain also made
day it was and kept on at me to do
the Association their club’s annual charity
it again.
and raised a further £4,500.
“I arranged it all myself this time so
Kim said: “It just shows how wonderful
it was on a smaller scale – a golf day,
and supportive my friends – including exevening raffle and entertainment. A
Portsmouth FC players and an ex-England
great day was had and the evening
International footballer – and the golf
entertainment was superb. In total we
club have been since my diagnosis.”
raised around £2,700.”
Kim organised a skydive over Salisbury
Last year’s charity golf day made £5,700.
Plain in September for team
‘MND… We’re going to get you’
and raised around £18,000.
He said: “My friend’s son had
done a skydive and his dad
told me how much he loved it
and how he would jump at the
chance to do it again.
“That got me thinking that
could I get a couple of mates
and my sons to do it for the
Association. Well, that soon
turned into a group of 30
people including my wife
Stephne, my two sons Chris
and Sam, and nieces Gabby
and Ellie.
“A great day was had by all. In
fact about a dozen people are going to do
it again next year.”
Kim puts his fundraising success down
to the support of those around him.
“Does anyone in the world have a
better group of loving, caring, supportive
family and friends – I don’t think so,” he
said. “When I stop and reflect they make
me feel so humble and blessed.”
*Walk to d’feet is a Trademark of The ALS Association and is used with permission. All rights reserved.
care
Improving
wheelchair services
Kevin North from Invacare talks to Simon Adams about the Spectra XTR and how it could meet his needs
We are improving wheelchair provision
for people with MND and recently
launched our third specialist wheelchair
service.
Health professionals, people affected
by MND and charity representatives
gathered for the launch at the Queen
Elizabeth’s Foundation for Disabled
People’s (QEF) Mobility Services Centre at
Carshalton, Surrey.
Our wheelchair service is funded from
a three-year grant from the Department
of Health. This also funds wheelchair
therapist Jenny Rolfe at our MND Care
and Research Centre in Oxford, and
Christine Orr at Seacroft Hospital, Leeds.
Sally Light, our Chief Executive, told
the 80 guests at The Future Is Here launch
event in November: “The MND wheelchair
service at QEF is a partnership we are
extremely proud of.”
Jonathan Powell, Chief Executive of
QEF, said the charity was thrilled to be
part of the exciting partnership. He
explained: “We have an affinity with
the MND Association in that we believe
disabled people should have the same
opportunities as everyone else to achieve
their goals in life.”
“Our prescription meets the
needs of 80% of people with
MND that need a wheelchair,
which is a great help to
professionals.”
Our new wheelchair service at QEF is
delivered by Occupational Therapists
Fiona Eldridge and Paul Graham,
managed by Sarah Vines.
Fiona said: “We are trying to see people
with MND very early while they are still
mobile. It’s so much easier if we are not
dealing with a crisis situation.
“Being based at the QEF Mobility
Service Centre gives people with MND
the opportunity to benefit from the other
services it offers. For example people
can look at wheelchairs and wheelchair
assisted vehicles (WAVs) at the same time.”
Referrals to our wheelchair services are
made by Association staff and volunteers,
our MND Care Centres and Networks and
NHS wheelchair services. Individuals may
also self refer.
New powered neuro wheelchairs
The government grant has also funded our
work to develop four new powered neuro
wheelchairs in an innovative partnership
care
with leading wheelchair manufacturers
Invacare, Ottobock and Sunrise Medical.
The electrically powered indoor/
outdoor wheelchairs (EPIOC) are designed
to meet the changing needs of people
with MND. They bring together elements
from a variety of standard products to
create a new wheelchair prescription
which is available to NHS providers.
Speech and environmental controls can
easily be added.
The prescription will help therapists
prescribe the right chair for the estimated
300 people with MND who need a
powered wheelchair in any one year, while
reducing delivery times and costs.
Karen Pearce, our Director of Care
(South) said: “Our prescription meets the
needs of 80% of people with MND who
need a wheelchair, which is a great help to
professionals. It has a number of bolt-on
From left: Paul Graham, Sarah Vines and Fiona Eldridge
at QEF
features which means one wheelchair
adapts to people’s needs over time.
“It also means a wheelchair is swiftly
available ‘off the peg’ and this is knocking
weeks and weeks off previous provision.
In the past people have had huge waits
for a wheelchair – in some cases up to 18
months – and at times the wrong chair
has then been provided.
“Cost-wise it’s attractive to wheelchair
commissioners too. We are delighted that
116 neuro powered wheelchairs have been
purchased by wheelchair services in the six
months since they have been available.”
Influencing wheelchair services
Our work to influence wheelchair
provision has seen us meet with
wheelchair services across the country and
listen to therapists and people with MND.
We have also presented at a number of
important conferences.
This has helped us to identify where
we should focus our attention to make
the biggest difference for people affected
by MND.
“We want people with MND to have an
improved service and get the right chair at
the right time,” explained Karen.
“It is absolutely not our role to replace
statutory provision, but we are working
with the Department of Health and NHS
England to make sure commissioners are
aware of the needs of people with MND.”
We recently attended the high-profile
NHS Improving Quality My Voice, My
Wheelchair, My Life summit. This aims to
transform NHS wheelchair services so that
users with complex and changing needs
can get the right wheelchair for their
needs in a timely way, and appropriate
and continuing support.
Warm welcome and personal approach
Margaret Cox from Camberley, Surrey, and her husband
David, are supported by our wheelchair therapist Fiona
Eldridge at QEF Carshalton.
David is set to receive one of the new powered neuro
wheelchairs and the couple also plans to lease a WAV.
“We received a really warm welcome from Fiona and the
personal approach offered has been a breath of fresh air,” said
Margaret.
“Visiting the service really opened our eyes to what is
available – we had no idea there was such a variety of chairs
or vehicles.
“It’s a blessing to come to the Association’s wheelchair
service at QEF, it’s hugely beneficial to us.”
Accessing a wheelchair
It is estimated that 80% of people
with MND will need a wheelchair.
It is important that an appropriate
posture and mobility assessment is
carried out as early as possible, to
determine what type of wheelchair
or mobility equipment an individual
may be entitled to on the NHS.
England
Assessments are offered by the NHS
through the 150 wheelchair services
in England (also called Disablement
Service, Enablement Centre etc). There
are local eligibility criteria and referral
processes, however in general anyone
with reduced or impaired mobility
should be able to be referred to their
local NHS service by their GP or Health
or Social Care Professional.
Northern Ireland
Assessments are offered by the NHS
through the Department of Health,
Social Services and Public Safety
(DHSSPS) Wheelchair Service. The
service is provided by the Regional
Disablement Centre at Musgrave
Park and local assessment centres
within the health care trusts in
Londonderry, Enniskillen, Armagh,
Newry and Antrim. Referrals are
made by a hospital, GP, consultant or
occupational therapist.
Wales
Wheelchair services are provided by
the Welsh Posture and Mobility Service
which is delivered by the Artificial Limb
and Appliance Service (South Wales),
and the Posture and Mobility Service
(North Wales). These are supported by
specialist Rehabilitation Engineering
Units (REU) at Bryn y Neuadd, Cardiff,
and Swansea. Referrals should be made
by a qualified healthcare professional.
Further information:
For more information or advice
on wheelchair services email
wheelchairqueries@
mndassociation.org
Margaret and David Cox
To view our powered neurochair
information film visit www.
mndassociation.org/wheelchairs
your stories
How MND has affected your lives
Losing my
voice
Trevor Burlingham, from
Thetford was a professional
photographer and keen
public speaker before a
diagnosis of MND.
The zorbing team
Great balls of fundraising
Andy Gray, from Middlesbrough, and his friends had a ball of a
time on a fundraising walk with a difference.
In 2013 I convinced my friends to take on
the 24-hour UK Three Peaks Challenge,
it was fantastic. Driving home with the
adrenaline pumping we knew next year
had to be bigger and better.
I was with my dad, who has MND, and
brother at a Newcastle match and at half
time two giant inflatable zorb balls were
rolled on to the pitch. I turned to my dad
and said, ‘That’s our next challenge’.
The team didn’t take much convincing.
Many thought it was crazy and impossible
but I told them surviving MND is
impossible, this would just be hard work.
We wanted to complete a coast-tocoast zorbathon, but logistics wouldn’t
allow it. Northumberland County Council
was fantastic and the 60-mile Five Castles
Zorbathon came about.
We travelled from Warkworth Castle to
Alnwick (no one has had so much fun in
there since Harry Potter learned to fly his
broom) on to Chillingham then Bamburgh
and Dunstanburgh over three days in a
zorb ball.
On day three it was great to be
joined by Colin Hardy from MND
Northumberland, his support was
invaluable and around 35-40 of our family
and friends walked the last four-and-a
half-miles with us, MND buckets in hand.
Alnmouth had a beer festival. Bus
drivers stopped to donate, women threw
money at us from taxis and people came
out of pubs to get a glimpse at the crazy
gang.
What made this last leg so special was
that my dad joined us. We took shifts
pushing him until we finally reached
Warkworth Castle where it all began.
We raised almost £4,000 for MND
and received £2,000 in donations of
equipment etc. We also hope we helped
raise more awareness.
I had a long
career working
as a professional
photographer,
retiring in 2013. I
was also a public
speaker, speaking
on many subjects
loosely related to
photography. I would
be booked for as many
as 60 talks per year.
Trevor Burlingham
I found my voice
was getting rather slurred, in fact when I
had just one glass of wine I would sound
positively drunk. It was also getting a
problem to swallow.
I went to see my GP and after several
tests I was diagnosed with bulbar
progressive MND. In the following six
months I have almost lost my voice, I
cannot even answer the phone and have
to use an iPad for communication, even
with my wife Annette. I have great trouble
drinking and can only eat soft foods. I am
having a PEG fitted.
My hands are weak, I cannot do shirt
buttons up or do any fine work. My ankles
feel like lead when I walk, which is not far
these days.
The result is I had to cancel all the talk
bookings I had this year, I had hoped to
continue with my public speaking for the
foreseeable future. I cannot easily lift or
operate a camera these days.
On the positive side I can still drive, I
have a Blue Badge which is a great help
and I still have some mobility. The support
I am receiving from the medical profession
in my area is excellent, and my wife and
I attended a four-week Positive Living
Course at St Nicholas Hospice, Bury St
Edmunds.
The support we are receiving from the
Association is unbelievable. I do not know
what we would do without you.
your stories
Caring takes its toll on emotions
Former carer Jennifer Chambers describes how a Thumb
Print story has brought her some comfort after the loss of
her husband Tony.
In September 2014 my husband was
diagnosed with MND. Just 22 days later he
died. He was 64.
Three years before he had to give up
his job as a bus driver after suddenly
developing double vision. This was put
down to a mild stroke as he had weakness
down his right side.
His weakness worsened and his walking
was getting very poor. In November
2013 a CT scan revealed a giant brain
aneurysm. The doctors believed this had
been causing the problems and he should
improve.
But Tony’s condition deteriorated. Our
GP referred him back to the neurologist.
He agreed something more was wrong
and Tony was admitted for tests. We
received the devastating news it was MND.
Just 22 days later I lost the love of my life.
He had pneumonia and his body could not
fight it.
While planning the funeral with the
celebrant, the postman delivered the
welcome pack from the MND Association. I
couldn’t open the envelope for a couple of
weeks. When I finally did, I flicked through
Thumb Print and saw all the courageous
and inspiring articles with a growing
feeling of hopelessness.
All those lovely people and their loved
ones dealing with their illness with such
courage. Then I came across the story
from Pam McQuillan. She had written so
honestly about how she had cared for her
husband through MND. She had put into
words the exact feelings I have. It feels like
I spent the last two years nagging Tony to
try harder and moaning that I never had
any time to do anything for myself etc.
I feel so guilty that I couldn’t have been
kinder. I told him every day how much I
loved him and I know he loved me very
much but it doesn’t stop the guilt. Pam’s
story has helped me realise maybe I am
not such a bad person and 24-hour caring
has a huge impact on your emotions and
patience. Thank you Pam.
I am glad we only had three weeks to
know Tony’s condition was terminal. All
Tony and Jennifer Chambers renewing their wedding vows
the time we didn’t know he had MND
there was hope. He believed his life
would get better and we would grow old
together.
My days now are very long and lonely
and I miss Tony every second. He suffered
so much, with such patience. I was so lucky
to be married to such a special man.
I wish MND sufferers and their families
courage and hope that a treatment will be
found to end this terrible disease.
Dad’s positivity continues to inspire
Inspired by memories of her dad, Nicola Williams, from Rhydymwyn in North Wales, and her
family are fundraising to support our work.
Since losing our
dad Russ in 2012
at only 58 years
old, my family
has held many
fundraising
events including
a table top sale,
coffee morning
and auction
night.
Russ Williams
In 2014 my
sisters Sally and Cathy and I did the Great
North Run and raised nearly £2,200 for the
Association.
My dad is an inspiration to us all as he
dealt with his illness so positively and we
never heard him grumble.
Our mum Jen cared for Dad for three-
and-a-half years and catered for all his
needs. They had been together since
high school and we were all so pleased
they got to celebrate their 40th wedding
anniversary.
Our brother Steven Jones and his wife
Beth are also very supportive.
My dad was a great granddad, always
making time to have fun with the
grandchildren – eight in all – so he was
always kept busy.
My son was born on New Year’s Eve in
2011 and sadly we lost Dad eight days
later – he got to see Arthur once. I named
my son Arthur Russell.
We all miss him so much and life has
never been the same since. Please keep
up the good work and let’s hope for a cure
one day.
Pictured, from left: Cliff Wiseman, Sally Wiseman, Cathy
Beckett, Nicola Williams and Stephen Beckett
your stories:
Please send your stories and photos to
editor@mndassociation.org or
Editor, MND Association,
PO Box 246, Northampton, NN1 2PR
your stories
Cut out to be an artist
Garry Holt, 38, from Oldham, has found a creative way to manage his darker days.
Garry Holt with his art
I was diagnosed with Kennedy’s disease*
in 2004 aged 29. In 2013 I felt well
enough to go into hospital for a routine
operation, but complications occurred and
afterwards it seemed I had forgotten how
to walk.
My balance had completely gone. I
didn’t know where to put my feet and my
legs and arms were going into spasms.
I was referred to the Floyd Unit at Birch
Hill Hospital in Rochdale where I was an
in-patient for six months to help me back
on my feet.
It was a dark time for me and I slipped
into deep depression, but near the end of
my stay I was shown art therapy.
I was very reluctant as I’m rubbish at
art and the first session was awful, but
the lady explained the following week we
would do collage work.
Well, that day something just clicked.
The lady said I had a natural talent. On
leaving she told me to keep doing the
work. So I did and when I have dark days
now I make pictures.
I set up a Facebook page called Room
8 Gallery and straight away I received 500
likes. I was gobsmacked.
Somebody forwarded my work on, and
I have been chosen ahead of hundreds of
other artists to hold my own art exhibition
in Touchstones Gallery, Rochdale.
It’s been a rollercoaster year, with a
somewhat happy ending.
My exhibition will be from 6 June to 29
August.
It would be great to see some of you
there, as I’m having an opening day. If not
please have a look at my work, Room 8
Gallery on Facebook, and give me a ‘like’, it
would be really appreciated
*
Kennedy’s disease is a disorder of the
motor neurones which is caused by genetic
mutation. The MND Association supports
people with Kennedy’s disease.
My incredible family
Alec Jenkins says words cannot describe how proud he is of his
brother Paul, nephew Ross and sister-in-law Lin, for raising funds
and awareness of MND.
In 2013 Paul and Ross (known as Jenko
and The Bear) walked the Ridgeway
National Trail, an impressive 87 gruelling
miles. Last year they walked the Kennet
and Avon tow path, a distance of 85 miles.
The route included a very high aquaduct.
Neither of them likes heights!
I managed to get the delightful Ellis
Barker, a reporter with the Newbury
Weekly News, to publicise the walk. When
they passed through Newbury I met up
with them, Lin and her friend Sheila, and
the newspaper sent a photographer.
They have also completed other walks
and runs, including three Reading halfmarathons for the Association, plus other
events in aid of other charities.
Lin provides support for the walks and
also organises and/or participates in
various money-making and awareness
raising schemes, eg car boot sales, fetes –
anything that will make money (providing
it’s not illegal or immoral!). She is assisted
by Sheila, whom she met at the Olympics
where they were volunteer Games Makers.
She volunteered to clear up after the
Reading music festival. Those involved are
allowed to keep anything they can sell.
She collected folding chairs, tents, duvets,
sleeping bags, wellies, etc, much of which
has been sold and added to the fund.
When not doing anything else she knits
dolls to sell. Everything they collect or
realise from sales goes into the fund, all
costs and expenses are paid out of their
own pockets.
It is unlikely that a cure will be found
in time for those of us with MND at the
moment, but it is still essential to fund
research for the benefit of those in the
future.
My family’s latest efforts were to raise
Back, from left: Lin, Jenks, Chris, Jan, Margaret, Jane and
front: Alec
funds to buy a cough-assist machine.
I’m hoping it will be a long time until
I need it. In the meantime it will be at
Royal Berkshire Hospital for the benefit of
others.
Margaret, Jane and Jan, the Chair,
Publicity Officer and an Association Visitor
of the local branch went to the hospital
to present three cough-assist machines
purchased by the branch.
Jenko and Lin presented the machine
they had bought. Several local papers/
radio stations reported the event and
Ellis from Newbury Weekly News gave my
family the recognition they deserve.
your stories
Caption
Chris Pennington and Ciaran Ball
Our Oompa Loompa adventure
Chris Pennington and his brother-in-law Ciaran Ball set off for a fundraising adventure in
Cumbria – dressed as Oompa Loompas. Chris shares their story.
When my dad was diagnosed with MND,
Ciaran and I decided to come up with a
fundraising idea.
The fact we had never heard of MND nor
knew anything about it was scary. As he
was a great lover of the Lake District, we
decided to do a hike there; to fundraise
and spread valuable awareness.
In 2010, we set out to hike 50 miles, over
five days covering a handful of mountains.
The mountain range was littered with thick
snow! We still walked 50 miles and climbed
one of the mountains and raised £3,500,
which was brilliant.
I’m in the RAF and Ciaran lives on the Isle
of Man, but in 2013 we were together again
and went to the Lake District. We realised
we needed to sort out another trek.
I deployed out to the Falklands and
took maps of the Lake District. I taped
them on my bedroom wall and started to
brainstorm. Sadly, Dad passed away and I
was flown home. When I returned to the
Falklands I had a route planned in a week
– walking 100 miles and climbing 44 peaks
in nine days.
We designed T-shirts stating ‘44 Peaks,
100 Miles, 9 Days, 1 Reason’, along with our
JustGiving page and text code. We set a
target of £1,500.
We decided to dedicate each mountain
to someone with MND, or who had sadly
lost their battle – warriors and angels.
We devised a banner to hold on each
mountain and my wife Kim and I created a
massive one with everyone’s name on for
the finish line.
We wanted to stand out so people
would ask what we were doing. The idea of
dressing as Oompa Loompas came into my
head! Why? I will never know. However; it
was a cracking idea and boy did it work.
Our next task was to gather our 44
names. Dad was one of them but it left 43.
Through Facebook we found 32 different
MND group pages and posted a message
on each. Within three days I’d received
requests for 25 names to be added. We
created a Facebook page www.facebook.
com/cumbria2014 and have 1,233
followers. Crazy!
An hour before we set off, we broke
through our fundraising target – a great
feeling. We increased it to £3,500, which we
smashed on day three!
The support was immense. We had
created ‘business cards’ to catch those who
would say ‘Sorry, I don’t have any cash on
me’. Each day there were messages from
people who had bumped into us and gave
a donation. We were getting donations of
£50 to £100. We carried a collection pot
and by day seven we’d raked in £600. We
were touching people’s hearts. It’s difficult
to explain how good it felt.
Kim got a slot on Lakeland Radio and my
mum and sister spoke on our behalf.
We spread some of Dad’s ashes on the
44th peak where our family were waiting.
An emotional moment. In total we covered
130 miles and raised £6,248. It made our
adventure so worthwhile.
We would like to thank all those who
supported us and donated. We’re planning
our next epic adventure – obviously
dressed as Oompa Loompas!
Watch a video of the adventure at:
http://youtu.be/bB5eg6suqNU
your stories
Living life to the full
Thanks to Joycie Somerville’s important contribution, from
April surviving partners of members of the Armed Forces
Pension Scheme will retain their pensions for life, even if they
cohabit or remarry.
For her part in the landmark decision,
Joycie, who has MND, travelled from her
home in Lincolnshire to represent the
Royal British Legion (RBL) at the Opening
Ceremony of the Westminster Garden of
Remembrance and met Prince Harry. This
is her story:
Joycie Somerville
I anguished over this decision. Stay on
my own, keep claiming my first husband’s
pension or move in with Peter and lose
it. I have bulbar onset MND and am
increasingly vulnerable. I knew I needed
to be near Peter. So we married and the
pension was terminated. Why should any
widow have to choose between love and
money?
The RBL took up the gauntlet, ran a
feature in their Poppy magazine and
made it their top priority on their 2015
manifesto. This was launched at each of
the three party political conferences in the
autumn, so my appeal got mega publicity.
When I awoke to see the Prime Minister
making that very announcement, it just
made my day! I was utterly delighted. It
was a culmination of a personal appeal I
had started some ten months before.
They very kindly allowed Peter
to accompany me to the Opening
Ceremony of the Westminster Garden of
Remembrance, because I have no voice.
It was a long wait and my legs almost
collapsed, but Peter got me a chair where
I rested until Prince Harry came down
the line – of course I stood up then! He
spoke to both of us. He was completely
charming, totally relaxed and made
everyone feel at ease.
I wore MND Association lapel pins and
Peter ensured everyone around us was
aware of MND and how it affects people.
I had my iPad and wrote (and ‘spoke’)
messages all day.
I know physically you have scant control
of MND’s progress but psychologically you
do. I was determined, from the first time a
neurologist suggested MND was the worst
case scenario, that I would live life to the
full while I had a voice and was not bed
bound.
Peter and I had a wish-list to visit family
and friends and all those special places
close to my heart. We have travelled over
3,000 miles, hosted weekends at home,
and my list is almost done now. It has been
a revelation.
Everyone in my life knows I love
them and I am myself embraced in that
same emotion from family, friends, excolleagues, and of course the wonderful
people I have met through MND.
I don’t see MND as a negative thing at
all. In a strange way, I am grateful to God
that He has given me the time to accept
the inevitable and put in place all the
things I want to do before this wretched
disease finally claims me. We are not
downhearted, we laugh a lot and live life
to the full. Every day is a bonus!
Hell Runner challenge
Worth getting
muddy for
Vicky Carpenter, from Didcot,
quite literally got stuck in to
fulfilling a fundraising promise
she made to her dad.
In August 2013 our dad Chris was
diagnosed with MND. It was a terrible time
for our family and learning that there was
no cure was an immense blow.
The injustice of this sentence grew a
deep determination in me to fight for a
cure and to start fundraising for the MND
Association.
Last April my husband, James, myself
and four amazing friends ran as team Chris
Jones in the Hell Runner – 10 miles off
road tackling hills, rivers and muddy bogs. We wore blue and orange tutus.
Jenny Rolfe from the Oxford MND Care
Centre joined in too. It was smelly, muddy,
hard work but brilliant fun and team Chris
Jones raised over £3,300 – well worth
getting muddy for.
Dad sadly passed away in June. My
husband and I had promised him we
would continue to raise funds for the
Association to find a cure, to help others
like him and their families.
This is Dad’s legacy and we will continue
raising money until we win this battle
against MND.
Stay in your own bed
Stay in control of your comfort
The Comfier is a set of individually controllable inflatable tubes
that convert any single or half of a double bed into a fully featured
high dependency care surface in minutes.
•
Developed following feedback from people living with MND.
•
Adjust how hard or soft the Comfier feels to suit your individual needs.
•
Customise your Comfier by setting the firmness of each tube separately.
•
Unload pressure partially or completely by adding or removing air
in the tubes underneath specific parts of your body.
•
Profiling feature gives you the flexibility of an adjustable bed.
•
Access specific areas for personal care without the need for you to
roll or turn by removing air from selected tubes.
To book your no obligation demonstration call
01937 843967
Or to find out more visit
Comfort you control
TM
www.mobilitywithdignity.com
17
Mobility with Dignity, Unit 422c, Thorp Arch Estate, Wetherby,
Email: print
info@mobilitywithdignity.com
LS23 7FG
thumb
Winter 2015
campaigning
Around 1,800 people
have emailed almost
1,000 parliamentary
candidates urging them
to make a commitment
to improving access
to communication
support for people
with MND since we
launched our General
Election campaign.
Better access to communication support
is the focus of our General Election
campaign, and thanks to you support is
growing.
We know that 80-95% of people living
with MND will experience some loss of
speech before they die and too many
people experience significant delays
in getting the right communication
equipment.
Our message to parliamentary
candidates? ‘Don’t let people with MND
die without a voice’.
Our 12 champions from across the
country are standing alongside Charlie
Fletcher, who is the face of this campaign,
to make sure we are heard loud and clear.
They have all been affected by MND:
either they live with the disease, care for a
loved one with MND or have lost someone
to it.
And they share a common goal – to
ensure that until we cure this devastating
disease, those living with MND get the
support they are entitled to from statutory
services.
Technology is there
Our champion Sarah Ezekiel describes
losing her voice as the most difficult part
of her journey with MND.
She made a short film about the
benefits of using eye gaze technology,
using alternative and augmentative
communication (AAC) to speak.
She said: “Suddenly, you have a voice
everywhere, people can’t wait to talk to
you and see your magic computer. You
give talks to health professionals, you can
almost keep up with conversations and
you have a very loud voice. You’re still
severely disabled but part of you is back
and it feels so good. Technology is there.
Everyone can have a voice.”
Watch Sarah’s film at www.
mndassociation.org/champions
Passionate about raising awareness
Championing our
election campaign
Jan Cousins was diagnosed with MND
in 2012. She is passionate about raising
awareness and has written a blog.
She says “Next May, my first grandchild
will be born. I am so delighted and excited.
I can deal with the sad fact that I won’t be
able to take it for walks, play on the floor,
help feed and change it. I hope I will be
here to see its first Christmas, but, oh the
anguish if I can’t talk to it or read it stories.
Liam and Anna Dwyer outside Westminster
campaigning
“If I lose my voice, those who meet me
for the first time will have no sense of who
is the person locked inside this body.
“Communication aids can’t replace
my voice, but they can mean that I, and
others like me, can still show that we
have emotions, opinions and a sense of
humour.”
Demanding urgent action
Liam Dwyer has been campaigning on
access to communication support for
several years. He is fed up that universal
access still does not exist.
He is leading a campaign in Surrey and
Sussex where the problem is particularly
bad. Several people with MND have been
told the money for their assessment and/
or communication aid does not exist and
that they should instead approach the
Association for funding.
Liam thinks this is unacceptable and we
agree.
We coordinated a letter led by Sam
Gyimah MP and signed by 13 other
local MPs, including Secretary of State
for Justice the Rt Hon Chris Grayling MP
and Government Chief Whip the Rt Hon
Michael Gove MP, to NHS England Chief
Executive Simon Stevens. It demanded
that he take urgent action to ensure
people with MND in Surrey and Sussex
have timely access to communication aids.
“I am proud to see our local MPs
recognise the problem and come together
to send a loud message to NHS England
that it is unacceptable to let people die
without a voice,” Liam said. “We continue
to campaign to address this serious failing
in Surrey, Sussex and beyond.”
Meet our champions
These nine champions are joining Sarah, Liam and Jan in telling their stories and
gathering support for our campaign. We are showcasing them on our website
and social media channels and they are organising local events and meeting with
parliamentary candidates.
Heather Smith: Heather, from
Helen Warren: Helen is from
Swindon, campaigns for change
Portsmouth. Her dad was
following her experience of
diagnosed with MND in 2011
caring for her partner Steve, who
and died the same year. “Having
died from MND in 2012, aged 51.
MND is heartbreaking for the
She says voice ‘plays a key part in enabling
person and their family,” Helen says. “Then to
you to be clear about what you want to do
lose your voice is just terrible.”
and to receive what you want and need’.
Mark Stone: Mark lives in Oxford
Greg Broadhurst: Greg lives
and was diagnosed with MND
in Manchester and raises
in 2012. “Losing the ability to
awareness of MND in memory
communicate is probably the
of his grandfather. “People may
single most terrifying aspect of
not like politics on a personal
MND for me,” Mark says. “We should ensure
level,” Greg says, “but this campaign is about that those of us who are unfortunate enough
far more than politics, it's about the basic
to have MND are not further tormented by
human right to communicate.”
losing our ability to communicate with the
rest of society before we die.”
Helen Findlay: Helen cared for
her father, James, who was
Katy Styles: Katy Styles is the
diagnosed with MND in 2005
main carer for her husband
and died seven weeks later.
Mark who was diagnosed with
James lost his voice.
a rare form of MND in 2010.
“Our access to communication
Rita Beaumont: Rita, from
aids will be determined by where we live”,
Bedford, is chair of North
Katy reflects, “Where we live shouldn't
Bedfordshire Branch. She is
come into it.”
an active campaigner and
passionate about ensuring
Mark Styles: Mark lives in East
people get the support they need.
Kent with his wife Katy (see
above). He urges people to
Tannwen Saunders: Tannwen
support the campaign, saying:
lives in South Wales. She
“People who can communicate
campaigns in memory of her
powerfully need to make the case for better
dad Carl, who died from MND
provision of communication aids to help
in 2009.
those who can't.”
Get involved
“One person telling 30
politicians is just not as
effective as 30 people telling
one politician. We need
numbers to make an impact,
we need to make everyone
know this is a problem and
make them take a moment
to imagine how it may feel
to lose their voice.”
Campaign champion, Helen Warren
You don’t have to be a Campaign Champion to get involved. Everyone can make a
difference, whether you have two minutes to spare or two hours.
2 minutes to email candidates
Send a pre-written email to your
candidates using our easy e-action at
www.mndassociation.org/voice
30 minutes to meet with candidates
Set up a meeting to talk to your candidates
face to face – the most effective way of
getting our messages across.
10 minutes to write to candidates
If you haven’t got access to the internet,
use our template letter to write to your
candidates. Contact us on 01604 611684
for a copy of the letter.
More time? Organise a local event
Use our guide to help you. We have all
the materials you will need to set up your
event.
For information about meeting with candidates or organising a local event, download
our pack at www.mndassociation.org/localevents or contact our Campaigns Team on
0207 250 8447. Find out more at www.mndassociation.org/voice
The difference we made together in 2014
“The impact of
the Ice Bucket
Challenge on
the Association
has been truly
phenomenal.
In this, our 35th
year it must
be seen as a
turning point in
our history.”
Sally Light, Chief
Executive.
Thanks
“We try and
have fun, raise
some money,
but ultimately
spread the word,
as we know how
important that is
for people living
with MND and
those left behind.”
“I miss my mum’s
hands. They were
our physical point
of contact for my
whole life with
her. So the High
Five hands have
been inspirational
and heart
warming!”
“By opening the
DNA Bank to
these exciting new
areas of research,
the Association
is increasing the
likelihood that a
breakthrough will
be made sooner,
rather than later.”
Matthew and Richard
Hollis drove to the
Arctic Circle and back
in an old Citroen van.
Christopher Hodge’s
post facebook about
our MND High Five
‘selfie’.
Colin Fenwick on news
our DNA Bank samples
will be available for new
avenues of research.
88
VOLUNTEER BRANCHES
AND GROUPS
8,000
MEMBERS
£561,000
883
PIECES OF SPECIALIST
EQUIPMENT LOANED
GIVEN IN GRANTS TO PEOPLE WITH MNND
“The more
people who
spread the word
and talk about
MND, the closer
we’ll be to
finding a cure.”
Mark Samson, one
of the faces of our
Voice Awareness
Month poster
campaign.
The difference we made together in 2014
to you
“It is brave
and probably
breaking new
ground to be
so refreshingly
candid with
patients when
describing what
may happen.”
Dr Colin Campbell,
retired Palliative Care
Consultant on the
launch of our end of
life publication.
“I’m proud that the
Association has
grown from such
a small group into
a world-leading
organisation. We
never dreamed
of this happening
when we started
35 years ago.”
Jenny Elston,
volunteer and founder
member of the
Association.
“I can cope with
being trapped inside
a useless body, but I
struggle with the idea
of losing a big part
of myself when my
voice eventually fails.
I don’t want to die
without a voice.”
“I just don’t
know what I
would have
done without
the help and
guidance of
everyone on
the online
forum.”
“Trying to raise
awareness of
a disease not
many people
know about can
feel like banging
your head
against a brick
wall at times.”
Charlie Fletcher, the face
of our Don’t Let Me Die
Without A Voice election
campaign.
Forum member
and carer
Christine
Bungay.
Mark Maddox,
fronted our
Football v MND
poster campaign.
£3.1M
SPENT ON FUNDING AND
PROMOTING RESEARCH
3,000+
ACTIVE VOLUNTEERS
19
CARE CENTRES
AND NETWORKS
3,468
PEOPLE WITH MND
DIRECTLY SUPPORTED
£0.9M
SPENT ON CAMPAIGNING
AND RAISING AWARENESS
Figures relate to our 2013/14 financial year and are taken from our Impact Report, available to download at www.mndassociation.org/impact
care
Ventilation
a matter of choice
With MND, the use of ventilation
may need to be considered,
where a machine helps support
breathing. Deciding whether or
not to use this support can be
difficult. We spoke to three people
living with MND, who have made
different choices.
Ventilation cannot stop MND progressing:
if breathing muscles begin to weaken, this
will continue to get worse. Nevertheless,
although the benefits may vary, assisted
ventilation can improve quality of life and
help reduce anxiety and fatigue.
An assessment is needed to find out if
ventilation is suitable. The GP should be
asked for a referral to a respiratory team
where staff can help an individual make
an informed decision that feels right for
them. Personal needs, current condition
and wishes about future care may all play
a part in decision making.
Susan Bingham, from Northamptonshire
was diagnosed with MND in 2004. She is
unable to walk or speak and has no power
in her hands – but her mind is as active
as ever and she has a zest for life. Susan
has decided not to use ventilation or tube
feeding.
“I have never felt ill and I am not in
any pain,” she explained. “The most
devastating thing has been losing my
voice, as I was, and still am, a chatterbox!
The best gadget I could ever have is my
Lightwriter, my way of communicating
with the outside world.”
Susan explained why ventilation was
not the right choice for her. “I don’t want
medical interventions because I only
have a short time to live, so the trauma
of having procedures, just for a few extra
months, is not for me,” she said. “I believe
in dying naturally.”
She says she feels fortunate to have a
paid carer, whose support improves her
quality of life in many ways. Amanda cares
for Susan six days a week, ten hours a day,
including all of her personal care, and
liaises with professionals.
“We are a team, it is like a marriage,”
said Susan. “She is my voice, my arms and
my legs. I don’t know what I would do
without her.” Care worker Amanda agrees
that personal choice is of vital importance.
She said: “Susie knows exactly what she
wants to do and it is up to me to help her
with that.”
A tricky decision
Roch Maher, from Hounslow, was
diagnosed in 2009 and uses non-invasive
ventilation for 15 hours a day – mostly at
night. He accepts his decision to use noninvasive ventilation (NIV) was a tricky one.
He describes ‘being in the middle of a
love-hate relationship’ with NIV. He added:
“I’d thought it was the difference between
staying alive or not, but at first, it’s more to
do with energy and the ability to get up
and go.” However, he added: “It takes time
to get used to NIV. In fact, it will probably
never feel completely normal.”
Roch found NIV a difficult decision to
make as it meant thinking ahead about
end of life issues. He said: “What tipped
it for me was that at any future point,
I could ask for NIV to be withdrawn.
And if, by that stage, I was unable to
breathe independently, I would be made
comfortable.”
A valued member of our care
information user review group, he recently
tested our information sheets on breathing
and ventilation. “I found them an excellent
resource and, despite using NIV overnight
since December 2013, I learned a lot.” Well worth it
Ron Stevenson, from Haywards
Heath, began using a ventilator soon
after diagnosis when his consultant at
Queens Medical Centre referred him to the
respiratory team.
He initially used a machine to keep
oxygen levels up at night and relieve
morning headaches and exhaustion.
Although he found it difficult, he was
encouraged to persevere.
Over the years his ventilator usage has
increased and Ron is now dependent on
the breathing machine.
“We were very anxious to extend a good
quality of life for as long as possible and
the way to do that was to battle through
with this wonderful machine,” he said. “I
simply wouldn’t be here without it, and it’s
well worth it as I still enjoy life.”
The use of nose prongs during the day
and a full face mask at night has relieved
the impact on Ron’s nasal passages
following infections. Gill, Ron’s wife and
carer, has become an expert in setting and
adjusting the machine.
“We were very anxious to
extend a good quality of life for
as long as possible and the way
to do that was to battle through
with this wonderful machine.”
Ron’s current bilevel positive airway
pressure (BiPAP) machine is portable and
battery powered which means he can get
out and about and enjoy visits to his local
hospice, providing respite for Gill.
Finding out about the options for
ventilation, as soon as possible, provides
time to think and understand what
choices mean, now and in the future.
Early decision-making means wishes
and preferences are known by everyone
involved in someone’s care.
Information on ventilation
We have re-launched our range of
information sheets about breathing and
ventilation with MND:
14A - Understanding how motor neurone
disease might affect breathing
14B - Ventilation for motor neurone disease
14C - NICE guidelines for non-invasive
ventilation
14D - Troubleshooting when using noninvasive ventilation
14E - Air travel and ventilation for motor
neurone disease
Download these at www.mndassociation.
org/publications or order printed copies
from MND Connect: 08457 626262, email:
mndconnect@mndassociation.org
Ron Stevenson is dependent on his ventilator
care
Types of
ventilation:
Non-invasive ventilation (NIV):
A portable machine helps boost
intake of air through a mask.
This covers the nose, or nose
and mouth, depending which is
most comfortable. NIV is usually
needed overnight at first. As the
disease progresses it is likely
to be used more often. NIV can
prolong life, but as breathing
muscles continue to weaken,
there may come a time when NIV
is no longer effective.
Invasive ventilation
(tracheostomy or trache):
A machine takes over breathing
via a tube inserted into the
windpipe through the front
of the neck. This is less likely
to be offered, although some
people with MND use this type
of ventilation. Although the
machine can take over breathing
if needed, the disease continues
to progress, so plans for future
care should be considered.
If ventilation is not suitable
or the decision is made not
to use it, the respiratory team
can advise on other support,
including:
• posture and positioning
• breathing exercises
• help to cough
• medication to ease symptoms
and anxiety
In most cases, ventilation for
MND uses normal air to support
breathing. Extra oxygen is not
usually recommended with MND
as it may be harmful. However,
it may be used with caution if
someone’s oxygen levels are low.
volunteering
Privileged
to make a
difference
Providing confidential
emotional support,
accurate information and
help to access services
and equipment, our 300
Association Visitors (AVs)
play a key role in delivering
our care support for people
with MND.
It’s a challenging yet
enormously rewarding role
designed to be flexible to
fit around a volunteer’s
lifestyle. Two AVs share
their experiences.
volunteering
A conversation with a friend seven
years ago led Joan Randell to take on
a volunteering role which she says has
changed her perspective on life.
A retired medical social worker, Joan
from Northamptonshire became an
Association Visitor (AV) in 2007, and
since then she has supported 18 families
affected by MND.
“I went to lunch with a friend who was
an AV and she told me about the work
they do,” she explained. “I found it very
inspirational and I felt I had a lot to offer
and that I had the background to be an AV.
“I got in touch with the Association
to express my interest in becoming
an AV and that’s where it started. The
conversation was just good fortune.”
Professional and personal experience,
including the loss of her husband to a
neurodegenerative condition, has helped
Joan in the role but she says personal
qualities are far more important.
“My knowledge of the health care and
social care system and experience of
being a carer for my husband have been
a tremendous help to me, but what is
important is that all AVs have different
personalities, approaches, experience and
skills,” she said.
“Above all, to become an AV you need
to like people and want to help people.
It’s important to be able to engage with
individuals in all circumstances and to
be prepared for different environments,
lifestyles and approaches.”
Joan currently spends around three
hours a week on her AV duties, although
the amount of time committed to the role
varies significantly from one volunteer to
another.
“I support people living with MND, their
carers and the extended family,” explained
Joan. “I offer face-to-face and telephone
support and also communicate with
people via email.
“I see myself as a befriender and
listener. I have become part of the journey
that people with MND have to make, but
at the same time I have to remain apart
from it. My role is to give people the
opportunity to talk about their fears and
anxieties, empower them and to be nonjudgemental.”
Joan has a close relationship with local
health professionals who she says ‘respect
and value’ those in the AV role.
“AVs signpost to and liaise with
professionals. Sometimes, people affected
by MND don’t know their way around the
health or social care system so I help them
find the information and resources they
need,” she explained.
“Above all we give people the
permission to share with us how they feel.
They share their innermost thoughts and
it’s a privilege that they allow me into
their lives and homes.”
While Joan acknowledges some
conversations can be challenging, such
as those on end of life issues, she says ongoing training and support means she is
well prepared for the role.
“We have AV meetings once every
six weeks and I find them very useful.
Rachel Boothman, our Regional Care
Development Adviser (RCDA), shares
with us what’s happening within the
Association and AVs can talk to each other
about problems they come up against.
The support Rachel gives to us and the
support we give each other is invaluable.
“It’s comforting to know Association
staff are there should I experience any
problem or difficulty. I feel we are valued
by the Association.”
Joan says it’s a rewarding role and one
she would recommend to others.
“The ‘thank yous’ are so meaningful. It’s
very rewarding to hear ‘I really appreciate
what you have done’. I feel privileged to
be able to make a difference to people’s
journey and life through this awful disease.
I’m very passionate about what I do.
“It is very humbling and so rewarding.
I have met some lovely people and it
has changed my perspective on life. It is
something that I really value.”
We are recruiting AVs
The number of people with MND that
we are in touch with is increasing and we
have ambitious plans to recruit many more
AVs and to explore other caring roles and
activities to meet their changing needs.
Would you like to find out more
about the AV role? Please contact us
on 08456 044150, email volunteering@
mndassociation.org or visit www.
mndassociation.org/associationvisitors
A fresh perspective
William Roberts from London has a
fresh perspective on the AV role having
completed his AV training
early last year. He currently
visits one man with MND.
The 27-year-old
prospective medical
student came across the
AV role while searching for
a long-term volunteering
opportunity.
“As a prospective
medical student I had
previously engaged
William Roberts
in some short-term
voluntary roles and while rewarding
and valuable experience they lacked
the development of relationships with
people,” he said.
“I began searching for some longterm voluntary roles when I came
across the AV role for the MND
Association. I had had no experience of
MND beyond awareness of high-profile
cases but I believed I could really make
a difference on an individual level with
this role, as well as learning a lot from it.”
William said the Association went
to great lengths to make sure he was
suitable.
He said. “An interview and exposure
to branch meetings prior to the AV
training course ensured that potential
volunteers were fully committed and
gave them the opportunity to decide
whether the role was right for them.”
The training course ensured William
was well prepared for his first visit.
“It was an enlightening course
led by people who are clearly very
knowledgeable and experienced
in healthcare. They understood any
potential concerns volunteers may have
and by the end of the course I felt more
than ready to go out and get stuck into
the role.”
Understandably, William felt a little
nervous before his first visit but a
member of staff was on hand to offer
support.
“The RCDA for the area accompanied
me on my first visit and supported me
through it. It was a valuable learning
experience and I am now looking
forward to helping this person in any
way I can.”
Association visitor Joan Randell
care
We’re working to educate and inform more health and social care
professionals about MND – and we need your help
Supporting
professionals
to support you
When you’re affected by MND, you’ll be
in contact with a number of different
health and social care professionals.
Some of these will be specialists, or have
experience or a specific interest in MND.
However, there may be others who know
little about MND, often because they
haven’t seen or treated many people
with the condition. We’ve heard from
many of you about how important
it is for professionals to have a good
understanding of MND and how it affects
you, and what a difference this can make
to your quality of life.
Here are just a few of the things we’re
doing to improve MND knowledge with
doctors, nurses, therapists and care
workers – among others – and how we can
work together to make this happen.
Sharing knowledge at our RCN event
Education partnerships and events
We work with many partners, including
royal colleges, other charities,
professional bodies and universities.
Partnering with other organisations not
only increases the impact our work can
have and the audience we reach, but it
also gives us access to specific skills.
By working with universities, for example,
we tap into their knowledge of course
development. Through our partnership
with the University of Northampton, we
are developing educational modules
for care workers, as well as courses at
undergraduate and postgraduate level.
More recently, we have been exploring
opportunities for volunteer recruitment
and wider research projects with
universities.
Our partnership with the Royal College
of General Practitioners (RCGP) has led to
the development of Red Flags, a tool that
supports GPs to recognise the potential
symptoms of MND. The aim is to improve
the time taken to diagnose the condition,
by encouraging GPs to refer to hospital
neurology services as soon as possible.
Alongside the tool, we’ve also created a
Red Flags presentation and online module,
both of which are accredited by the RCGP
and help GPs to gain recognition for the
education they’ve received on this topic.
These resources fit with the requirement
on GPs to demonstrate their professional
development.
Working alongside other membership
organisations allows us to share
information with their specific networks of
professionals, or to ask these professionals
what they need from us. Hosting events
in partnership is one way of doing this.
For example, we worked with the Royal
College of Nursing to deliver a successful
conference focused entirely on MND
(see page 32). This year, we will deliver
a lecture series at the RCN Library and
Heritage Centre and will be developing
an MND nursing module. Similar projects
are underway with Hospice UK and the
College of Occupational Therapists.
“As MND affects people so
differently, it is important to
have a way of drawing on other
professionals’ experiences and
knowledge.”
Working with other organisations
and their members ensures we know
what professionals want from education
activities. A positive educational
experience can help raise awareness
of the Association and the services we
can provide to professionals and their
colleagues, as well as to the people with
MND they support.
Information resources
We’re creating a new range of resources
for different groups of health and social
care professionals. About to launch is a
booklet aimed at professional care workers,
and we’re also working on a resource for
hospital accident and emergency staff. At
the same time, we’re updating our popular
booklet for GPs and the primary care team,
along with our range of information sheets
that cover information such as managing
saliva and respiratory symptoms.
We’re developing an online hub of upto-date, evidence-based information on all
aspects of MND at www.mndassociation.
org/professionals
Over the next year, we’ll be working
towards gaining accreditation for the
care
How you can help
Our information is designed to help professionals such as Jayne Tooth, Day Hospice Manager at St Giles Hospice, Lichfield,
to support people with MND. Jayne is pictured with Richard Morris, a day visitor at St Giles.
quality of our professional resources. Our
aim is for these resources to be as highly
regarded as our care information, which
carries NHS England’s quality mark, the
Information Standard.
Professionals’ Forum
Our Professionals’ Forum, launched
towards the end of last year, is proving
a valuable online tool for health and
social care professionals. From wherever
they are, they can connect with other
colleagues across the world to share
information and ask questions about all
aspects of MND.
Barbara Strevens, an Occupational
Therapist, described the Forum as: “An
ideal way for professionals working with
people with MND to link with each other.
“As MND affects people so differently,
it is important to have a way of drawing
on other professionals’ experiences and
knowledge. By spreading the word on
this forum we can expand our skills and
enhance patient care.”
Members are kept informed with
news and information from across the
Association, including educational events
and opportunities to support us in
research and campaigning.
Collaboration and knowledge sharing
among professionals is key to improving
understanding and raising awareness of
MND. Health and social care professionals
can register to join the discussion at
proforum.mndassociation.org
Regional Care Development Advisers (RCDAs)
You may already be aware of our RCDAs
– they work closely with health and social
care professionals to help them provide
effective support for people with MND.
Many of them are from health and
social care backgrounds themselves, and
they offer training in MND to all types
of professional. They’re also champions
at influencing care services in their
respective areas.
Contact MND Connect 08457 626262,
email: mndconnect@mndassociation.org
for details of your local RCDA, or visit
www.mndassociation.org/rcda
You can help us to reach more health
and social care professionals with
our information, education and
Professionals’ Forum:
rder information resources from
O
MND Connect to take with you to
appointments.
Encourage your healthcare team to
join our Professionals’ Forum at
proforum.mndassociation.org
Raise awareness with your GP. If
you have an appointment with your
doctor coming up, please pass a
copy of our Red Flags tool to your GP.
While you are there, you could also
ask them to sign up to our MND
Charter. Materials are available at
www.mndassociation.org/gpaction
or from Tina on 01604 611684.
We’d also like to hear what you
want the health and social care
professionals you come into contact
with to know about MND: this will
help us to create relevant information
resources in print and online.
Please email infofeedback@
mndassociation.org or contact Bev
Goodman, Professional Information
Developer, on 01604 611866.
Report highlights NHS failures
People with MND are waiting too long for speech and language therapy appointments
and vital communication equipment, according to a new report published by the
All-Party Parliamentary Group (APPG) on MND.
Condemned to Silence publishes the findings of an inquiry chaired by Madeleine Moon
MP in autumn 2014. It attracted over 1,700 submissions of evidence from across England,
Scotland, Wales and Northern Ireland.
The report was recently launched at a parliamentary reception jointly hosted by the
APPG and the MND Association.
Key findings:
The NHS in England has failed in
its duty to provide communication
equipment to people with MND:
Charities continue to plug the
funding gap:
How you
can help
Please use our APPG report
summary card to talk to your local
candidates about this important
issue. They may come door
knocking canvassing for votes, or
you could arrange to meet them.
Questions to ask candidates:
Do you know what motor
neurone disease is?
Have you seen/read the recently
launched APPG report on access
to communication equipment for
people with MND?
and maybe as
little as 25%
There is no statutory duty on the NHS
in Wales and Northern Ireland to fund
communication equipment.
People with MND are waiting too
long for appointments and vital
equipment:
A crisis in speech and language
therapy is looming:
Do you agree that people with
MND should have access to the
right communication equipment
at the right time?
Will you support the MND
Association’s ‘Don’t let me die
without a voice’ campaign by:
• S igning the MND Charter
in support of local people
with MND and to show your
commitment to working with
the Association on this urgent
matter? Candidates can sign
at www.mndassociation.org/
charter
• E nquiring locally about
communication services for
people with MND? Urge them
to visit www.mndassociation.
org/voice
We will be using the report to campaign for better access to communication support
for people with MND as part of our general election campaign (see pages 18/19).
Copies can be downloaded at www.mndassociation.org/appgreport2015
The APPG report clearly shows the NHS has failed in its commitment to provide
communication equipment to people with MND. Political commitment and urgent
action is needed.
Make sure you pass them a
copy of the summary card
enclosed with this magazine
as a reminder of these actions.
It is also available to download
at www.mndassociation.org/
appgreport2015 or order a
printed copy on 01604 611684.
ice bucket challenge
Ice Bucket windfall
In a few short weeks last summer,
you and the great British public
raised an astonishing £7 million
for the Association through the Ice
Bucket Challenge. We asked you to
tell us how you thought the money
should be spent, and this is what
you had to say.
At their meeting on 31 January, our Board
of Trustees was due to discuss ideas for
spending the windfall, which have been
informed by the views expressed in the
survey. More than 2,000 of you took the
opportunity to have your say. We asked
you to choose your top three areas for
investing the funds.
Overwhelmingly, 88%, or 1,759, of you
answered that you felt the money should
be spent on research into the causes of
MND and new treatment strategies.
You said:
“Research into the causes of MND
and new treatment strategies is
really very important. Since the
1980s, awareness is so much greater
than treatment and diagnosis can
only improve when the causes are
known.”
“A cure is the most important thing.”
Research into improving care for people
with MND was also a high priority with
51%, or 1,020, people choosing this
option.
It was also felt that more help for carers,
such as respite care, was vital. Access to
the very best standards of palliative care
was a key consideration.
You said:
“Patients need excellent palliative
care. There was nothing at all for my
husband.”
“Provide fully-trained nurses to go
into people’s homes to help support
carers.”
your views
Some 739 members, or 37% of the
respondents, wanted the money to be
spent on increasing education for health
and social care professionals.
You said:
“We need additional education
for hospital staff who don’t fully
understand MND. When my
grandfather was in hospital this
time last year, he had people
picking him up and moving him
about with his sore arm, and
because he couldn’t speak, they
continued to do so.”
While we decide how to best make use
of this totally unexpected windfall, the
added financial security has allowed us to
HOW YOU WANT THE
MONEY SPENT:
88%
*
ON RESEARCH
INTO CAUSES
AND TREATMENTS
51%
*
ON RESEARCH
INTO IMPROVING
CARE
37%*
ON MORE
EDUCATION FOR
PROFESSIONALS
*Percentage of respondents who chose this area in their top three
fast track several new projects including
seven research grants totalling £1 million
to UK research teams and studies. These
are aimed at understanding the causes
of MND, the processes which lead to
motor neuron regeneration and the
development of new approaches to
treating the disease.
Six new PhD studentship projects will
also start shortly, totalling over £500,000.
These involve cutting-edge research and
draw on the next generation of young
scientists in the expanding world of MND
research.
Thanks to the Ice Bucket Challenge,
we can accelerate our genetic research
programmes. We are embarking on a
major initiative to find the genetic factors
that not only predispose people to MND,
but also the factors which may slow the
disease in some people.
We also plan to further develop our
specialist MND Care Centre programme,
while campaigning for more statutory
support for people living with MND and
all those who care for them.
We know the needs of carers and young
people are very important and we are
committed to doing more in this area.
One of our first actions has been to
provide Young Person’s Grants. We have
pledged to offer ten grants per month of
£250 per grant for young people aged 17
and under who live in the household of a
person with MND or who have a parent or
guardian with the disease.
Already, grants have been agreed for
tutoring costs, driving lessons and a new
laptop, as well as classes for martial arts,
music and dance.
For more information about how to
apply please contact your local branch or
group.
The results of the survey have been
analysed and will be considered in
conjunction with our strategy to identify
where the money will make the most
difference to people with MND.
Look out for further updates in Thumb
Print and on our website and social
media channels.
news
Bill update
Snowman Bucky strikes a chord
The Assisted Dying Bill reached
committee stage in the House of Lords
towards the end of 2014.
This is the stage at which a Bill is
discussed line by line and amendments
tabled and voted on. So far only the
first part of the Bill – clause 1 – has been
scrutinised in this way. Several days are
usually needed to discuss entire Bills.
At the time of going to press, the
second day of committee stage was due
to take place.
We know that the Prime Minister
has said he is not convinced by the
arguments for legalising assisted dying
and we believe the Bill is unlikely to
progress significantly through Parliament
before the General Election.
You can follow progress at http://
services.parliament.uk/bills/2014-15/
assisteddying.html
We have been hugely moved by the
response to our Christmas appeal
and we are delighted that Bucky the
snowman struck a chord with our
members and supporters.
This is a critical time for the
Association. Following the
huge success of the Ice Bucket
Challenge the disease is, at
last, at the forefront of public
awareness.
We intend to seize this
historic opportunity and keep
pushing forward towards
treatments, and ultimately, a
cure. It is wonderful to know
that we can rely on you.
The momentum against
MND is building,
and we have to
keep it going.
Care information is
award winning
We have been officially recognised for the
clear information we provide for people
with MND.
Our An easy read guide to motor neurone
disease and our new Introduction to motor
neurone disease have each won a Plain
English Award.
And in September our core guide Living
with motor neurone disease was shortlisted
for Patient Information of the Year at the
British Medical
Association
(BMA) Awards.
The BMA
highly
commended
the
publication
and said:
“This is an
excellent resource for people living with
MND. It takes readers along a logical
and comprehensive pathway, acting as
a friendly, but independent guide to the
issues and questions they may face.”
Our publications can be downloaded
free of charge from our website at
www.mndassociation.org/publications
Alternatively printed copies are available
from our helpline on 08457 626262 or
mndconnect@mndassociation.org
With your continued support,
we will be able to say ‘yes’ to
more research proposals while
continuing to expand the
scope of our care services,
providing people affected
by MND with the support,
information and
equipment they need.
And we will
continue campaigning
hard to make sure the
voices of everyone with
MND are heard by key
decision-makers.
Once again, our
sincere thanks for your
support in 2014.
Here’s to an even
more successful
2015!
Do you have
experience of
Association Visitor
network?
Recognition for
care centre
The Manchester MND Care Centre team
has scooped a Contribution to Patient Care
award.
Nominations for the Salford Royal NHS
Foundation Trust awards were made
by patients and professionals and all
members of Trust staff were invited to
vote.
Samantha Holden-Smith, Manchester
MND Care Centre Coordinator/Specialist
Nurse said the team was ‘incredibly proud’
to have won.
“As a care centre we continue to strive
to work toward developing a service
which continues to meet the needs of
all those living and working with MND,
so receiving this accolade has been very
special to the team,” she said. “Thank you
to the Association for the support we
receive as a care centre to facilitate this
service provision.”
If so, we’d like to hear from you!
We are currently undertaking some
research to find out the impact of our
Association Visitor network on people
living with MND, their families and carers.
Throughout March and April, we’ll be
talking to people with MND, families,
carers and volunteers in a number of
different ways including: discussion
groups, face-to-face interviews and an
online survey.
If you’d like to contribute to the online
survey by sharing your views, we will be
promoting the link to the survey on our
website and on Facebook pages during
March and April. So please look out for the
link and take part! Your views mean a great
deal to us.
Why are we doing this evaluation?
We are doing this evaluation so that we
can further develop the service we provide
and demonstrate its impact on people
living with MND, their families and carers. If you have any questions about the
evaluation or would like to be involved
in a focus group, please contact the
Volunteering Team, volunteering@
mndassociation.org
news
Rescuer awarded for bravery
A young woman who saved a man with
MND when his scooter toppled into a
stream has received an award for her
bravery.
Natalie Thurston jumped into a river to
rescue Melvyn Fisher, from Lancing, West
Sussex.
Following a three-month hospital stay,
Melvyn, who has lived with MND for 18
years, is making good progress.
He recalled the incident: “I was reversing
slowly looking at a duck’s nest, then in
seconds I suddenly rolled over the bank
and into the sewage stream.
“I went under the water and hung on
to some tree roots – I thought I was going
to drown. Then suddenly I felt this person
grab me and hold my head above the
water – this was Natalie, my hero.”
Natalie was presented with her award at
West Sussex Fire Service Headquarters in
November.
Couple married – by their Association visitor
A couple affected by MND have been
married – by their Association Visitor (AV).
Jan Brown and Bob Williams, who
has MND, first met West Berks deputy
registrar Gill Weeks when she visited
them in her AV role.
Jan and Bob with Gill
The couple got on so well with Gill,
from the Reading and West Berkshire
Branch, that they hoped she would be
able to tie the knot for them on their big
day. Fortunately Gill was on duty that
day she was delighted to conduct the
ceremony.
“It was very personal and very special”,
said Jan, from Newbury. “Gill is great
as our Association Visitor and she did a
lovely job at the wedding too.”
She said getting married was on a
bucket list drawn up by Bob, a 64-yearold retired accountant.
Jan explained: ”Bob wanted us to get
married while he was still strong enough
to enjoy the day. Now we will face living
with MND together – it has made us
much closer.”
The golf-loving pair, did a sky-dive
together and now Bob wants to do more
flying activities and drive a steam train.
Jan, who gave up work so they can
spend their time together, said: “We don’t
know how long we will have together so
it gives us more time to make the most
of life.”
Growing awareness
at Chelsea
We will once again be ‘growing’ awareness of
MND with a garden at the RHS Chelsea Flower
Show.
Our 2015 entry will take a nostalgic look back to
the past and feature a once-busy forge in a state
of neglect because the blacksmith has MND
and is unable to work.
Our thanks to designer Jodie Fedorko and
Martin Anderson MBE, who is one of our
founders, for making the garden possible.
In 2013 our Outer Hebridean entry –
the Association’s third Chelsea garden
part-designed by Martin – won gold.
HRH The Princess Royal joins a round-table session
Princess contributes
at forum
HRH The Princess Royal shared her
thoughts on issues affecting carers when
she attended our annual Association
Visitor (AV) Forum. Our Royal Patron was guest of honour
at the event in Stratford-upon-Avon.
She took part in a round-table session
on carers, in particular the role of young
carers, before thanking our volunteers for
the difference they make.
More than 60 AVs attended the October
event to hear about progress being made
in implementing our strategy, to network
and to take part in workshops on carers
and diversity.
Roger Hurdman, from Birmingham
and Solihull Group, met HRH and chatted
about the AV role.
“Her attendance was greatly appreciated
and she took time out to participate in
conversations with each group at the
event,” he said. “Her knowledge of MND
and understanding of the work of the
Association was clearly evident.”
Radio appeal
Good Morning Britain presenter and
Association Patron, Charlotte Hawkins, has
spoken of her family’s experience of MND
for a BBC Radio 4 Appeal. Charlotte’s father
Frank had MND and sadly died in January.
Charlotte tells listeners how important
the support of the Association has been
to her family. In addition to highlighting
our work, the three-minute programme
will appeal for donations to support our
activities. It was due to be broadcast on 25
and 29 January.
news
Watch our
conferences online
Our first Regional Conference will be held
in February, launching a series of new
events to provide more opportunities
for people affected by MND to gather
throughout the year.
The first conference in Reading on
1 February will be followed by events in
Manchester, 19 April; Stansted, 19 July
and Leeds (tbc), 25 October.
The events are aimed at people with
MND, their families and carers, and are
open to all those with an interest in our
work. They will be live streamed to reach
as many people as possible.
There will be no charge for people
living with MND and their carers and the
fee for other delegates is £15.
More information about the
conferences, including registration and
how to access the live streaming, is
available online at www.mndassociation.
org/regionalconferences and from the
Conference Team on 01604 611837 or
conference@mndassociation.org
From left, MND Association Chief Executive Sally Light, RCN Chief Executive Dr Peter Carter and guest speaker Baroness Finlay
of Llandaff.
Educating healthcare professionals
Association and the RCN.
More than 100 nurses
The day included
and other healthcare
presentations on topics
professionals attended our
including respiration,
first joint conference with
maintaining independence
the Royal College of Nursing
and palliative care.
in November. The event,
Working with professional
The MND journey – through
bodies enables us to
patient and practitioner eyes,
Dr Lucy Davies, GP, signs our MND
understand what professionals
held at the Royal College
Charter at our joint conference with
need from the Association and
of Nursing in London was
the RCN.
to share information to support them to
the first in a programme of educational
do the best they can for people living with
opportunities being delivered thanks to
MND (see pages 26 and 27).
an exciting new partnership between the
On target to achieve our strategic goals
With the start of a new year comes the
opportunity for reflection and the time
to review our progress over the past year.
At the end of 2013, we agreed and
published a new three-year strategy,
setting out the plans and goals which
we hope to achieve for people with MND
by the end of 2016. This strategy was
informed by the whole
Association family.
Delivering
At the end of the first
our mission
for people
year we reviewed our
with MND
and everyone
who cares
performance against
for them:
the goals outlined
to ensure we are on
course to hit our 2016
targets.
We are happy to
report that we are making good progress
against the majority of our 56 goals
within the strategy which relate to our
three mission areas: care, research,
campaigning and awareness, and our
supporting activities of partnerships,
education, people, income and
governance.
In fact a combination of hard work and
Our shared
commitments and
plans for the next
three years
2013-2016
external factors has helped us to move
ahead of where we expected to be at the
end of 2014.
The areas where we have made most
progress include:
Income and awareness: While we were
already on course to outperform our
targets for income and
MND awareness, the
Ice Bucket Challenge
in the late summer led
to an unprecedented
surge of awareness
and an extra £7 million
income. At their
meeting on 31 January
our Board of Trustees
was due to discuss ideas for spending
the windfall. We are also working hard to
maximise the extra awareness generated
by this global phenomenon. See page 29.
Genetic research: We recently received
ethics approval for new uses of the
MND DNA Bank, helping to establish it
as one of the best DNA resources in the
world. More than 1,000 of our DNA Bank
samples will also be used by Project MinE,
an international collaboration currently
involving 11 countries to identify the
genetic basis of MND.
Personal health budgets: While
the Government’s timetable for the
rollout of personal health budgets has
slipped, we have maintained our own
activity to increase the knowledge and
understanding of our own staff, and that
of health and social care professionals
involved in MND care.
Our Chief Executive Sally Light said:
“There is much for all of us who are part
of the Association to celebrate in terms
of genuine progress in the delivery of
our mission for people with MND, their
families and carers.
“We move into the second year our of
strategy in a very strong position. Progress
against almost all our 56 goals is either on
or ahead of schedule.
“It is clear to me that 2015 and 2016 will
be exciting years for the Association, as
we strive to move closer to our vision of a
world free from MND.”
news
from our chair
Welcome to
my first Chair’s
column for
Thumb Print!
My election at
September’s
AGM seems a
long time ago,
but I remember
clearly the
Alun Owen
message I
expressed in my address of the power
of working together. I am pleased to
report that we are demonstrating our
strength in this incredibly well.
Staff at David Niven House have
been very busy recording suggestions
for spending the Ice Bucket Challenge
money. The ideas have been ‘pouring’
in from trustees, members, volunteers
and staff. As you read this, the Board
will be making decisions on how
to spend the money – making
an immediate and positive
difference to those affected by MND.
2014 was an amazing year for all of
us – the awareness gained from the IBC
was and remains tremendous; so many
more people now know about MND
and are ready to help.
2015 continued this theme with
the opening of the magnificent film,
‘The Theory of Everything’ and I was
privileged to attend the premiere with
other volunteers. The generosity of
Cineworld and Odeon cinemas helped
us to build on awareness-raising
opportunities by allowing collections
in their cinemas nationwide. As
volunteers, all this publicity helps us
in the fight towards a ‘World Free from
MND’ and I know that in my branch
in Merseyside, it has inspired us to
think of more opportunities to work
together raising awareness and funds
to continue this fight.
I have been busy with both branch
activities and Chair duties. We
were thrilled to welcome HRH the
Princess Royal to a celebration of
our Association Visitors in October
where our Royal Patron spoke to
everyone present. I attended an MND
Research Dinner, a number of local
branch meetings to celebrate the
work of volunteers, chaired two Board
meetings and played my part in finance
and budget-setting meetings. I also
squeezed in playing in my band for an
MND Association fundraising dinner.
The sheer amount and variety of
what we all do demonstrates that by
working together, we all achieve so
much more, the Ice Bucket Challenge
income is proof of that!
Good luck with your activities over
the coming year and thank you for all
you do. I look forward to meeting many
more of you at our conferences and
branch and group meetings around
the country.
Alun Owen, Chair, Board of Trustees
Anto Finnegan
Game for Anto
From left, John Collins, Antony Oxley and Pete Collins
2,014 reasons to celebrate
Brothers Pete and John Collins and their
friend Antony Oxley completed a series of
challenges covering 2,014 miles in 2014 –
and together raised £40,000.
The year-long fundraiser saw them
cycling from John O’Groats to Land’s
End, pedalling between England’s ‘big
six’ cricket grounds, running several
half-marathons, taking on a duathlon
and running 45km over nine different
European countries in 24 hours!
For the final leg of their challenge, Team
MND cycled 63 miles before celebrating
with a black tie ball with family and
supporters. John and Pete lost their dad
to MND.
Thousands of Gaelic football fans
demonstrated their solidarity with former
Antrim captain Anto Finnegan in his fight
against MND.
The 41-year-old launched his
‘deterMND’ campaign after he was
diagnosed with MND two years ago.
To highlight the campaign, an Ulster
select team took on Dublin in a unique
challenge match at Kingspan Stadium,
home of Ulster Rugby in November.
Game for Anto was watched by a
crowd of 6,200 and raised £68,000 to
support our work.
fundraising
Finding a new focus through fundraising
When much-loved dad-of-two Steve
Blakeley passed away he left a huge gap in
the lives of his family and many friends.
But during their time of loss they have
found mutual support and a new focus
thanks to Team Blakeley, a group
that raises money for an MND
Association Tribute Fund set up
in Steve’s memory.
Steve, a popular sales and
marketing director from Lancs,
was diagnosed with MND in
May 2009.
His wife Jacqui and the couple’s children
Connor, 15 and Jade, 13 are among the
family and friends who make up 20-strong
Team Blakeley.
The Tribute Fund was set up by Michelle
Nix, who learned about the fundraising
Guests at the charity ball
opportunity when she visited our website
to order ‘in memory’ envelopes for
brother-in-law Steve’s funeral.
“As the years went by and MND took its
hold, Steve only wanted to see a very close
knit group of family and friends,” she said.
“When he died we took comfort
in spending every evening together
sharing memories and talking about
how remarkable, brave and inspirational
Steve was.
“Around 400 people attended
Steve’s funeral. I realised
many wanted to share their
memories and also donate to
the Association to help find
a cure for this devastating
disease.”
Soon after, plans were made for a
charity ball. Within six weeks the friends
had created a Facebook page, designed a
logo, sold 300 tickets and raised £11,000
for the Association.
Michelle said Steve was an inspiration to
all who met him.
“He never had a bad word
to say about anybody and
everybody loved him,” she
said. “He was a fantastic
husband and couldn’t wait
to get home from work every
day to see the children.”
Fundraising events planned
for 2015 include another
charity ball, a football match,
and individual sporting
activities. They will all be branded with
Team Blakeley’s magpie logo, and all the
money raised will be recorded in The
Stephen Blakeley Tribute Fund.
“Steve died at a hospice and when we
Steve, Jacqui, Connor and Jade
left there were two fat magpies on the
wall cuddling each other. Jacqui felt it
was Steve cuddling his sister Lynn who
died 20 years ago,” explained Michelle.
“Fundraising for Steve’s Tribute Fund has
been a really good focus and we’ve raised
over £32,000. The events throughout the
year have also brought us together more. I
truly believe that Steve has encouraged us
all to do this in his memory.”
To find out more about our Tribute
Funds please visit
www.mndassociation.org/tributefunds
or telephone 01604 611864.
Three peaks team building - no mean feat
night’s sleep possible in a bunk house with
Sales Director, David Knight, was keen
eight to a room. This was no easy task.”
for his Miele employees to join in a team
The team started bright and ascended
building and fundraising exercise.
Ben Nevis with clear skies, cloud cover and
As his mother had recently been
snowy patches of rock. After a long drive,
diagnosed with MND, he nominated
the Association as his chosen charity
for their Three Peaks Challenge.
Each member was set a minimum
fundraising target of £200, and
monthly meetings and training days
were held.
David said: “With a plan in place we
set off for Fort William collecting our
guides on the way (Ed Docwra and
The Miele team
team from Mountain Munchkins) not
Scafell was completed in total darkness.
long before gaining a shout out on Radio
“The ‘rockier’ of the mountains were
2! After a high carb meal (and glass of wine
a tough challenge with morale low and
or two) we settled down to get the best
injuries high. Hot chocolate awaited the
climbers hosted by our incredible driving
team!” explained David.
“Finally, after drive and climb number
three we summited Snowdon completing
the challenge in glorious sunshine.”
Of the 12 who started the challenge,
seven achieved two peaks and six all
the climbs, no mean feat.
David said: “Our sincere thanks
for all the generous donations from
friends, family and our Miele Business
Partners. We raised over £10,000.
“This amazing experience has led
to an awareness of MND among all
of our colleagues and friends and has
also benefited our working relationships
as a team.”
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 at www.facebook.com/mndassociation
Mighty
teamwork:
Vivienne
Copeland,
from Bury, took
part in the
Manchester 10k
thanks to the
support and
stamina of her
friends Lesley
and Christine,
and son Tom.
They raised over
£4,000.
Down memory lane: Tom Kinver, from Devon,
rode his granddad’s bike from Northampton
to Devon in one day, re-tracing a route he had
cycled more than 60 years ago.
Tom said: “My granddad always loved
telling stories of his time in the RAF and of his
adventures racing his bicycle around the country.”
Tom’s extraordinary ride, on the first anniversary
of his granddad’s passing, raised £1,700.
On top of the world: Sharon
Collins, from Woking, conquered
Uhuru Peak, Mount Kilimanjaro in
loving memory of her uncle Mick.
Sharon battled against lack of
oxygen, cold and exhaustion to
raise £1,400 for our work.
“The whole experience was
totally amazing but the summit
climb was by far the toughest
challenge I have ever faced – both
mentally and physically!” she said.
Creating a stir: A picture-perfect Alice
in Wonderland scene was staged by
Justine Starling from Beccles, for a
bakeit! fundraiser in memory of her
father Timothy Law.
She said: “Even though we knew
MND had taken control of dad’s body
we didn’t let it take control of his life.
He was a wonderful father, selfless and
caring and always put his family first.”
Eyes to the skies: Samantha Skellett
raised over £600 for our work with a
sky dive.
Sam, from Stamford, cares for Ned
Cullen who has MND, and said: “Ned
came along just to watch me skydive
along with his wife Heather, young
son Rory, his dad Andrew and his
in-laws.”
Tutu much fun: The Cope family
decided on a ballet theme for their
Walk to d’feet* in memory of Bernard
Cope and wore orange tutus! Their
fun-packed day raised £4,500.
Walking the walk:
Kenilworth’s Malcolm
Doughty and Peter Herd
raised funds in honour
of their friend and excolleague Rod Macdonald,
who died from MND.
Their Arden Walk saw
them cover 26 miles in
a day and raise £2,023,
boosted by a further £1,500
matched funding from their
previous employer Barclays.
At their peak: Kate Perry from Normanton,
West Yorks, and her team took on the
Yorkshire Three Peaks Challenge and
conquered Pen-y-ghent, Whernside
and Ingleborough in 11.5 hours! Kate is
fundraising in memory of her mum Patricia.
down your way
The Beautiful Game: Cheryl Nash from
Beccles and her family organised a World
Cup-themed Walk to d’feet*. Adorned with
Brazilian flags, face paint and magnificent
headdresses, they raised £137.
Memories ‘n’ Dreams: North London
Branch Patron actress Lily James gave a
warm welcome to supporters at the branch’s
Memories ‘n’ Dreams Walk at Trent Country
Park, Cockfosters. Following a communal
‘warm up’ Lily, who plays Lady Rose in
Downton Abbey, wished 130 walkers and
runners good luck before they set off around
the park. More than £5,000 was raised.
Pictured are winners Joe and Leo Chadwick.
Running through the town:
Emma, Phil and Deborah
ran the Robin Hood Half
Marathon and raised over
£2,000 in memory of Jan Kara.
Go dad!: Paul Dorrell, from
Basildon, completed the
Chelmsford Marathon in 3hr
44min, whilst friends Tony
Bridger, Gordon Biggs and
David Finch cycled from
London to Brighton, between
them raising over £2,400.
Thrilling fundraiser: Beaconsfield’s Daisy
Tarrant took a high-altitude dive in loving
memory of her granddad Bob Sawyer. She
also organised a car boot sale with family
and friends and has raised nearly £1,500.
Sweet success: Melissa Hayes from Leicester
organised a bakeit! in memory of her dad Mick
Porter and raised £1,067 for our work.
Brotherly love: Ryan Willmott and brothers
Ash and Aaron, from Surrey pulled together
a team of over 60 runners to take part in the
Windsor Half Marathon in memory of their
mum Brenda. The team raised just under
£9,000.
Drop in: Tea, coffee, sausage
rolls and cakes guarantee smiles
all round at South West Surrey
Branch’s monthly drop in for people
with MND and their carers.
Record turnout: Mike
Findley MBE and a huge
team of supporters from
Cleveland held their annual
Walk to d’feet* and recorded
the largest turnout in 10
years! Over 100 walkers of
all ages attended, including
these young supporters.
down your way
Wild ride: Gamekeeper Chris Wild from Skipton
and his friend Mike Hemmingway were inspired
by this year’s Tour de France Grand Départ to cycle
an epic 300 miles over three days. Chris has been
fundraising since his father, Ted, was diagnosed with
MND and raised over £2,000 through this challenge.
No obstacle to
fundraising:
Claire Taylor from
Dunmow, Essex
and her partner Jay
tackled an obstacle
course in memory of
her dad David Smith
and raised £400.
Claire said: “I
know my dad would
have been with
us, laughing at us
especially at Jay,
knowing how much
he hates getting wet
and muddy.”
No distance too far to
fundraise: Rebecca Thomas
travelled from Australia to climb
Mount Kilimanjaro in memory of
her friend’s much-loved father,
Robert Gillam.
Rebecca said: “After watching
one of my best friends walk
down the aisle with her dad who
suffers from this horrific disease,
I promised myself I would do
something every year to raise
money for the Association.”
She has stayed true to her word
and raised $3,000 Australian
dollars. Next she’s taking on the
Australian Outback Marathon.
Rebecca, is left in picture with her
friend Paula Graham.
Fun and friendship:
Michelle Thorpe from Hull
held a coffee morning in
honour of her best friend
Gillian’s mother, Susan
Schofield, who has MND.
Michelle has known Gillian
for over 20 years. The event
raised £241 for the Hull and
East Yorkshire Group.
San Francisco running: Matt Crosse
took part in the San Francisco
Marathon – taking in the Golden Gate
Bridge and a tour of Golden Gate Park –
and finish 42nd out of 6,626 runners!
He raised £1,247 for the Portsmouth
and South East Hampshire Group,
where his proud parents Peter and Gill
are long-serving volunteers.
Strong as iron: Cathy Haynes, from
London took on the Ironman 70.3
mile triathlon in memory of her dad
Mike Burns. She later found out she
had been invited to represent the
UK in her age group for the next
challenge in Canada.
Cathy has raised around £16,000 for
her dad’s Tribute Fund.
Fair awareness: South West
Surrey Branch took part
in the Annual Combined
Christmas Charities Fair at
the Guildhall in Guildford.
Branch members Alvin Hale,
John Haywood, and Bob
Hodgson are pictured with
The Mayor of Guildford.
Caring colleagues: Chris Kett and his
team from the Pharmacy Department
of Norfolk and Norwich Hospital have
held two charity nights and one of the
team took part in the London Marathon
in memory of their colleague Karen
Williamson. They have raised around
£5,000 and are planning more events.
Sporting a great cause: Dame Sarah Storey, Britain’s
most successful female Paralympian was star guest at Red
Card for MND, a Sports Dinner and Auction organised by
Chris Maple in Salisbury.
The evening raised £7,000, including generous
donations from Dame Sarah and Simplyhealth. It was also
a great awareness raising event.
your voice
diary dates
Silverstone Half Marathon
15 March
Brighton Chicken Run
29 March
Brighton Marathon
12 April
Great Manchester Run 10K
10 May
Superhero Run
17 May
Edinburgh Marathon
31 May
Nightrider
6-7 June
Grand Union Challenge
27-29 June
British 10K London Run
12 July
Tough Mudder
Various dates April-October
Bakeit!
All year round
Walk to d’feet* MND
All year round
Regional conferences
Reading: 1 February
North West: 19 April
North East: 19 July
South West: 25 October
Choir’s chilly challenge
A literary legacy
November marked 15 years since my mum
died after living with MND for 10 years.
When the Ice Bucket Challenge was in
full swing, I posted on Facebook about
MND and the awareness and fundraising
campaign. One post mentioned that my
mum’s birthday was coming up.
A friend from a choir I belong to
suggested that,
in memory of
my mum, we
should do the
challenge.
I didn’t really
have any choice
but to agree to
put my money
where my
mouth is, so my
husband and I
and members
of Bexleyheath Rock Choir gathered at
the Royal Standard pub in Belvedere. They
kindly agreed to provide the venue and
the ice.
Some of us volunteered to be ‘iced’ and
others watched, took photos and donated.
In total, after adding the results of a
collection at our choir rehearsal, we raised
£250 for the Association.
We also had a terrific evening and my
husband now has great admiration for our
choir leader’s ability to organise us all!
Elaine Coates, Sittingbourne
When Alice Chambers, who had MND,
went into hospital to have a feeding tube
fitted her friend Ma
White brought her a
bear called Henry.
However, when
Alice, from Balemena,
County Antrim
returned home from
hospital the bear
was lost.
A search took
place and the
68-year-old and her family were
inspired to write a book ‘The Adventures
of Henry’ as a way of raising money for
the Association. The book was published
just four days after Alice passed away in
October.
Her daughter Deborah said: “The book
was very much a positive thing for both
my mum and
our family
to work on
when life
was getting
difficult.”
If you are
interested
in buying
The Adventures of Henry email
henrytheadventurebear@gmail.com
The book costs £3.50 plus postage and
packaging, all of which is being donated
to the Association.
Follow us @mndassoc
Talking about #MND on Twitter
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
editor@mndassociation.org
Nicola McIntosh @MrsNLMac Remembering one of my old school gang
today, Keith Hallway who battled #MND so bravely. Pls support @mndassoc
for a world free from mnd. x
Cycling For Bryan @Cycling4Bryan On 3rd May ’15 friends & family will
cycle over 1,000 miles from John O’Groats to Land’s End raising money &
awareness 4 @mndassoc.
Jordan Newell @jordannewell Well done to @mndassoc for raising
communication support for people with MND in Parliament this week. Look
forward to seeing inquiry report.
Lizzie @theEEBster Today @forstergolfpro reached his £3000 target for the
London Marathon. He is out training now. I’m so proud of him & his stepdad’s
memory.
Tracy Skinner @tr4cyskinner Next year I’ll be 40! Rather than celebrate by
consuming copious amounts of alcohol I’ll complete 40 sporting events in
aid of @mndassoc.
your voice
Fading away
about us:
Lynda Hatcher from Brentwood, Essex,
wrote this poem about her dearly-loved
husband Ian who was diagnosed with
MND two years ago and passed away in
November.
A poem for dad
I am watching my husband slowly fade away
Soon there will be nothing that he can say
Sophie McCarthy, 24, from the Forest of
Dean was inspired to write this poem for
her father Dennis, who was diagnosed
in 2013. She wrote: “My father has led a
full and active life. He is now retired and
enjoying his time taking regular holidays.
MND has not stopped him in any way and
he still leads his healthy, active lifestyle.”
24 hours in a recliner chair
How much more is there for him to bear ?
Motor Neurone Disease is so cruel,
It will drain away all of your fuel.
Motor Neurone Disease is unforgiving,
And can make you feel like it’s not worth
living.
Motor Neurone Disease has no soul,
But please don’t feel like you’re in a hole.
Motor Neurone Disease robs your
independence,
But please don’t let this be a life sentence.
Motor Neurone Disease makes you cough and
wheeze,
I wish this was something I could ease.
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.
Beautiful grandchildren of 3 and 5
Thoughts of them helping keep him alive
Hard for friends and family who show they
care
Harder still for the man who just sits there
Happiness and laughter throughout 45 years
Then 24 months of anguish and tears
Doctors, nurses and equipment galore
I never imagined would come through OUR
door
Website
www.mndassociation.org
Two wonderful daughters we know we have
How must they feel about their darling dad
Social media
How do you cope I hear people say
Sometimes it’s hard to keep smiling each day
Online forum
A place for people affected by
MND to share experiences and
support each other.
http://forum.mndassociation.org
But I know that he would do the same for me
Where did it come from this MND?
Facebook
www.facebook.com/
mndassociation
Motor Neurone Disease takes the sun,
But you are warm, you have won.
Twitter
@mndassoc
Even though you cannot eat,
You will never sit back and accept defeat.
You may have lost your voice,
But you can feel, you can think and you still
have a choice.
MND Connect
Our MND Connect helpline offers
advice, practical and emotional
support and directing to other
services and agencies.
I cannot take away your pain,
But please don’t feel like you have to live in
the rain.
So don’t be sad and down about life,
Please don’t struggle and live in strife.
Life is for living and with your time left,
Please don’t despair, and be angry over this
theft.
What I’m trying to say is live each day as your
last,
And please for the rest of your life have a blast.
For now I live through you you’re happy and
you’re sad,
But remember this I will love you for always
your ever loving daughter.
Open Monday to Friday 9am to
5pm and 7pm to 10.30pm.
Humbling experience
I thought I’d share this photograph of me
meeting Professor Stephen Hawking.
He was on the Royal Caribbean
Independence of the Seas Cruise Ship at
the same time as me in October.
I was then on a mission to meet this
gentleman and what an awe-inspiring
man he is. It was an honour to meet him. I
felt very humbled.
Ruth Johnson,
Vice Chair, Leicestershire and Rutland Branch
Membership
To receive a regular copy of
Thumb Print, call 01604 611855
or email membership@
mndassociation.org
JOIN THE CONVERSATION
Smartbox create communication solutions for people living with Motor Neurone Disease. Our equipment provides
many ways to stay in touch with family and friends using email, SMS, Facebook and more.
USEFUL APPS
FAST SPEECH GENERATION
Built in apps include word processor,
calculator and media player.
SOCIAL MEDIA
Message banking and
a sophisticated word
prediction system that learns
as you use it.
Easy to use grids for Facebook,
Twitter, Skype and YouTube are
included.
SIMPLIFIED EMAIL & SMS
MUSIC, PHOTOS & VIDEO
Simple grids to keep in touch
with family and friends.
Listen to music, browse your
photos and watch videos
from your device.
ENVIRONMENT CONTROL
Take control of your television, lights,
telephone and other equipment around
the home.
* Device shown is SB10 Mounted
with Tobii Eye gaze
ACCESS OPTIONS
Our devices can be used by people with varying levels of physical movement. From
touch screens to eye gaze, we have access technology to suit your needs.
WORK WITH US
Our team of experienced staff cover the whole of the UK and Ireland.
We will come and visit you for free and bring along a range of
equipment from a range of manufactures.
Smart House, 4a Court Road, Malvern, Worcestershire, WR14 3BL
T: 01684 578868 F: 01684 897753 E: info@smartboxat.com W: www.smartboxat.com
CONTAC
TO BOO T US
ASSESS K AN
MENT

Winter 2015 - MND Association

Transcription

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