Founder members look back over 40 years - Winter 2019
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The magazine of the Motor Neurone Disease Association
Winter 2019
Founder members look
back over 40 years
For mND
GAZE
COMPATIBLE
2 www.mndassociation.org
, part of the family
4-5
Bringing the world together
Looking back at the International Symposium
welcome…
on ALS/MND
This year, the MND Association will
6-7 mark its 40th anniversary – a unique
Founder members look back over
40 years
and poignant moment in our
As we mark the Association’s 40th anniversary, history.
Thumb Print remembers how it all began For me, and I expect for many of
10-11 you too, it is a milestone that evokes
Become a trustee in 2019 strong emotions – from great pride
Meet three of our serving trustees and find
out how you could join them at the significant steps forward we
17 have made in those 40 years to
‘Dedicated to solving the MND immense frustration that there are
puzzle’ still so many gaps in services for
The MND Association’s Head of Research, Dr
Nick Cole reflects on an important year for people with MND and only one available drug treatment.
MND research It is a time to remember all the loved ones, friends and
20-21 colleagues we have lost to this cruel and devastating disease
‘I want to prove that people with and to renew our commitment to our shared vision of a
MND are not alone’
Former footballer Len Johnrose, who is living world free from MND.
with MND, shares his story But I also believe It is a time of increased hope.
28-29 In December, I had the great privilege of attending the
Signing up to make a difference MND Association’s annual International Symposium on ALS/
How the MND Charter is working in
communities across the three nations MND held in Glasgow.
The Symposium is the largest event of its kind anywhere in
36-37 the world, bringing together more than 1,200 of the greatest
Thank you!
Remembering the work of our extraordinary minds in MND research and clinical care under one roof.
fundraisers
It was an extraordinary and moving experience to be
there, to witness researchers from all over the world working
together, united and resolute in their commitment to
Thumb Print is the quarterly magazine of the find the breakthrough which will pave the way for new
Motor Neurone Disease (MND) Association,
David Niven House, 10-15 Notre Dame Mews, treatments and the possibility of a cure.
Northampton, NN1 2BG While this important work continues in laboratories and
Reg. charity number 294354.
On the cover: Founder members of the MND Association
clinics all over the world, the MND Association stands ready
gather to mark its 40th anniversary. From left to right: to support all those who bravely cope with the harsh reality
Martin Anderson, Jenny Elston, Ann Gretton, Lesley
Ogden, Colin de’Ath and Joyce Prince. of MND each and every day, in any way it can.
Editorial and advertising enquiries: Over the past 40 years, the MND Association, thanks to its
Clare Brennan, Editor, 01604 250505
editor@mndassociation.org
volunteers, staff and supporters, has been there to make sure
If you have comments or feedback about that nobody has to face MND alone – and that is something
the magazine and its content, please do not that will never change.
hesitate to get in touch.
Thank you for all your support.
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 endorsement by the MND Association nor that
those products or services will be provided, funded or available via the
Association. All content © MND Association 2018.
Thumb Print is available to read online and as
a downloadable pdf at
www.mndassociation.org/thumbprint
Sally Light
Chief Executive
www.mndassociation.org 3
Bringing the world
I
N December the International Symposium on ALS/MND - the
largest scientific conference dedicated to MND anywhere in the
world - was held in Glasgow, Scotland.
Organised by the MND Association and hosted by MND Scotland,
the three-day event brought together more than 1,200 of the
world’s leading experts in MND research to share information about
their work.
As well as being a chance for researchers to share their findings,
the Symposium also provided a unique opportunity for them to
come together, sparking new ideas and collaborations.
The MND Association’s Head of Research, Dr Nick Cole said the
event had been a huge success: “The cacophony of chatter and
discussion in the coffee, lunch and poster sessions was incredible
– so much excitement, interactions, building lasting friendships
and collaborations.
Among the other developments discussed at the
Symposium were:
It’s not just about motor neurones
The non-neuronal cell session was important because it was once
thought that motor neurones were the only cells that caused MND.
It is now clear that MND involves many different cell types, and
in particular those that support the motor neurones themselves.
It is only recently, with the development of powerful tools and
technologies such as MRI and microscopy that we are now able
to see and understand for the first time the contribution of these
cell types in the normal function of motor neurones and the
development of MND.
Why are genes important?
The Genetics and Genomics session explained how looking Delegates attend one of the poster sessions
at genes and MND provides us with clues which allow us to
understand the biology of MND. The more genes we discover to be able to influence cells in the brain and, in some cases, can
the greater our understanding of what small process is going trigger a toxic response leading to inflammation of neurons and
wrong in the body which then causes MND. We can then focus their subsequent death. Although this relationship has not yet been
on this pathway to understand it and develop medicines to fully explored, researchers are now looking closely into the effects
correct any problems. our diet and intake of antibiotics have on our nervous system.
Is the microbiome to blame? Stratification to improve clinical trials
One of the recent trends in neurodegenerative research has been Recent reanalyses found the effect of the lithium drug on people
the focus on gut bacteria (the microbiome), which are believed with an UNC13A genetic mutation, but not in others, showing us
the importance of considering genetic variations in clinical trials.
Suggestions have been made that drug trials should specifically
focus on the gene variations that are known to be most prevalent
in the population – these are generally variations in the C9ORF72,
SOD1, FUS and TDP-43 genes.
The effect of lifestyle
One whole session was dedicated to the effect of lifestyle and
environment on the development and progression of MND.
Findings from one study involving a large group of people with
MND found that trauma, such as head injury, increases risk when
encountered over the age of 55, but not when the trauma occurs
before this age.
You can find out more about these and other topics on the
HRH The Princess Royal presents The Humanitarian Award to Dr Brian Dickie Periodic Table of MND Research. See next page for details.
4 www.mndassociation.org
together Highlights from the 29th annual
Symposium on ALS/MND
Allied Professionals Forum
Held one day before the Symposium, the Allied Professionals
Forum invited health and social care professionals to
exchange information about good practice and to facilitate
the highest standard of care for people with MND.
The Association had two speakers - Adele O’Toole who
talked about the support MND Connect Helpline offers
to healthcare professionals, and Emily Richardson who
presented on the range of information the Association
provides to support families affected by MND.
Ask the Experts
This two-hour pre-Symposium session was directed at all
those who are living with MND or affected by it.
Each year we hear from researchers and speakers on four
different topics of interest and provide a platform for people
in the room and those watching online to ask questions.
Poster sessions and Poster Prize
Aside from the talks that took place across the three days,
another big part of the Symposium was the poster session,
which allowed hundreds of researchers to share their work
and discuss it with delegates.
The Association awarded a prize for the best quality
biomedical and clinical research presented in the form of
a poster. Yuri Ciervo, a PhD student from the University of
Sheffield, and Dr Fleur Garton, a postdoctoral fellow from the
University of Queensland in Australia won the Biomedical
Poster Prize, and Harry McDonough, a medical student from
the University of Sheffield, won the Clinical Poster Prize.
Awards
Periodic Table of MND Research Two awards are presented by the International Alliance of
ALS/MND Associations every year. This year, the awards were
presented by the Association’s Patron HRH The Princess
Royal.
The Humanitarian Award recognises non-scientific
contribution in the fight against ALS/MND, and is presented
to someone whose work has made a significant contribution
to people affected by MND.
We are extremely proud of the Association’s Director of
Research Development, Dr Brian Dickie, for winning the
2018 award.
The Forbes Norris Award, presented in memory of a
neurologist Dr Forbes Norris, was awarded to Dr Angela
Genge, a neurologist from McGill University in Canada for
her relentless dedication to improving management of and
advances in understanding ALS/MND.
The Paulo Gontijo Award was presented to Dr Rickie
Patani of University College London. The Shay Rishoni
Patient Impact Award was presented to two people: Dr Ian
Do you want to find out more about the Symposium?
Davies, a clinician who founded the FightMND institution to
Head to www.mndassociation.org/symplive to find the fund research into the disease, and Neale Daniher, whose
Association’s Periodic Table of MND Research. involvement in the Big Freeze challenge raised funds
The table has been designed to explain more about all the towards FightMND. Ian sadly died from MND shortly before
topics that were discussed at the Symposium together with the Symposium.
links to the relevant resources, video interviews and more.
www.mndassociation.org 5
‘We needed support, but
This year, the MND Association will be marking its 40th anniversary –
a milestone which is only possible thanks to the outstanding
commitment and dedication of our founder members. Here, we
share their story and their memories of how the Association began.
I
T was a simple knock on Martin Anderson’s door that changed
not just his life, but the lives of people living with MND forever.
“One December night, my neighbour Roger Carus, knocked
on my door and told me he had got MND. He used to live
opposite me in Nottingham and often helped me to change the
oil in my car,” Martin explained.
“He said, ‘Before I die, I want to form a charity,’ and I thought,
‘Alright then, I’ll help.’ That knock on the door changed my life
completely.”
Roger, who was married to Jenny and had two young children,
was interviewed by the Nottingham Evening Post and the response
to the article was so positive led to a preliminary meeting being
held at the couple’s home in February 1979.
Jenny explained: “We started it because we knew we wanted
support. We needed something because nobody could help
us. At the very first meeting I remember there was a lady whose
husband had died ten years earlier. She hadn’t heard of MND
before he got it and she hadn’t heard of anybody with it since he
had died. She was pleased to be able to talk to someone and I
remember going away thinking if she had got through it then so
could I. That still happens today.”
Elsewhere in the country two other groups, both with
personal experience of MND, were also on the lookout for help
and support.
In London, John Prince approached the Evening Standard.
In an advert, he wrote simply: ‘May I ask any of your readers
Founder members Joyce Prince and Colin de’Ath pictured with the Association’s Director of
who suffer from motor neurone disease, or who are related to a External Affairs, Chris James
sufferer of this condition to write to me with a view to forming a
patients’ association.’ hospital for neurological diseases in Queen’s Square. It was 1973
His wife, Joyce said: “In 1972, we were on holiday in Falmouth by then and no-one was being frank about the disease he had.
and John was carrying a child on his back up this steep hill and he I went to see a neurologist to try and get a name out of him but
was really exhausted. He said, ‘There’s something wrong with me.’ couldn’t get one. It was John’s idea to set up the self-help group
He went through a long process and eventually finished up in a and I absolutely agreed with him.”
Around 40 people responded to John’s advert and a meeting
was held at the home he shared in Ealing with his wife Joyce in
June 1978. Among them was Dr Clifford Rose, a neurologist from
Hammersmith Hospital and Len and Peggy Betterton whose son
Paul had recently been diagnosed with MND aged just 29.
The final link was Peggy Berrie, who had set-up a support group
in Humberside following the death of her husband Bill. She made
contact with the Nottingham group and on 6 October 1979 the
MND Association was born.
Reflecting on the 40th anniversary of the Association, Jenny
said: “We couldn’t believe it would grow like this and get so far.
Looking back it has been fantastic. People with MND have so
much support now whereas we were in our own. I go to support
group meetings now and see how people value the support
they get, not just locally but nationally as well. They couldn’t have
The founder members pictured at an early meeting coped without the Association.”
6 www.mndassociation.org
no-one could help us’
Thumb Print: 40 years of headlines
T
HE first issue of the MND Association newsletter, the
precursor to Thumb Print, was published in November 1979
– just a month after the Association was founded.
In it, the newsletter announced that the Association had
been registered as a charity and that the newsletter would be Exhibition
published ‘two to four times a year.’
At the time, the Association was made up of three groups
will mark
in London, Nottingham and Humberside and it had been
announced that an AGM would be held in April each year.
Association’s
A handbook called Homecare for MND Patients had been anniversary
published, as well as a leaflet called What is MND?
A
Car stickers, pens and lapel badges were available for 25p and N exhibition featuring the
10p respectively, while Christmas cards could be purchased for 50p. work of artists who are
living with MND is being
B
held from 2-6 October.
Y Autumn 1983, the newsletter had a very different feel –
The event is being held at the
and the Association had a new logo.
Oxo Wharf Tower on London’s
The front cover featured a story about the late actor,
South Bank to mark the MND
David Niven who had died from MND earlier that year. The story
Association’s 40th anniversary
explained how a group of his friends had pledged their support
between 11am and 6pm on each
for the Association by launching a national appeal in his memory.
day and proceeds from the sale of
In other news, it was reported that research at Charing Cross
the art will benefit our work.
Hospital in London was now being funded by the Association
The exhibition is one of a host
and a research fellow had been employed at the National
of events being held throughout
Hospital, Queen Square.
the year, more details will be
An MND Association collecting box had also found itself on a
available in the next edition of
North Sea oil rig!
Thumb Print.
T
HE 1998 Autumn/Winter edition looked very different, with
a new masthead, logo and the introduction of two colour
printing. Share your
The front page story explained more about the success of an
early awareness campaign, featuring the face of Bill Johnson,
story with
which received a large amount of attention in both national and
international media. Sadly, Bill died from MND shortly before the
other readers
campaign was launched.
The magazine also reported on the annual conference which
of Thumb Print
had been held in September 1988 at the NEC in Birmingham. What does the MND Association
Among those attending was the Association’s Medical Patron, mean to you?
Dr Frank Clifford Rose and Medical Patron, Professor Stephen Do you have a story to tell
Hawking. about how the Association
has supported you or a family
T
HE first issue of Thumb Print was published in Winter 1991. member over the past 40 years or
The front page was dedicated to the launch of the perhaps you have been inspired
Breathing Space Programme, an initiative which aimed to support us either as a volunteer,
to provide a ‘breathing space kit’ to people living with MND campaigner or fundraiser.
comprising of information leaflets and a small box containing As the MND Association marks
medication prescribed by the patient’s GP. its 40th anniversary in 2019 we
Thumb Print also reported on a recent meeting of the would love to hear from you
International Alliance, featuring associations from as far afield as and share your story with other
South Africa, Romania and the Philippines. members of Thumb Print. Please
get in touch by emailing clare.
brennan@mndassociation.org
www.mndassociation.org 7
Funding is
secured for
care service in
North Wales
P
EOPLE living with MND across
North Wales will continue to
benefit from the success of the
region’s MND Care Co-ordination
Service, after it was announced that
funding had been secured from the
local health board.
London’s St Paul’s Cathedral provided the backdrop for the Association’s #TakeOverMND message
The service was launched by the
Association message takes
MND Association in February 2017
thanks to a £120,000 Ice Bucket
Challenge innovation grant and a
strong, collaborative partnership with
colleagues working in the NHS. Since
over London’s landmarks
B
then, the service, which has been UILDINGS and landmarks across suddenly diagnosed with MND, has had
delivered by two part-time care co- London provided the perfect one million views on Facebook and the
ordinators, has made a huge difference backdrop to spread the word Association has been overwhelmed by
to the lives of people living with MND, about the Association’s #TakeOverMND the response.
giving them a single point of contact campaign. One follower on Twitter said: “This is
for MND services in the region. Thanks to the generosity of creative brutal, hard-hitting, devastating – just
At a meeting of the Betsi Cadwaladr production company Projection Artworks, like the condition itself. It’s time we come
University Health Board (BCUHB) in the Association’s distinctive ‘police together to #TakeOverMND.”
September, it was announced that tape’ style artwork was projected onto Another said: ‘’I’ve been that little
they had agreed to fund the service, buildings across the capital as part of the girl. Wrapped my Dad’s present and
securing it for the future. #TakeOverMND campaign which launched unwrapped it for him. And my Dad’s mind
One carer who has used the service in September with a short film called The stays the same. Heartbreaking.’
said: “Following diagnosis we felt Ride. The Ride is still available to watch on
numb and unsure how to access MND The film, which tells the story of Luke, our website and can be found by visiting
services despite having a background a man in the prime of his life who is www.mndassociation.org/videos
of working in the health service. We
were so fortunate as one of the care
co-ordinators, Kathryn Lancelotte,
contacted us shortly afterwards, Wheelchair owned by our
patron sells for £296,750
making sure we were linked in to the
services we needed. Dealing with the
emotional impact of the diagnosis is
O
difficult enough, but having Kathryn NE of Professor Stephen The MND Association’s Director of
arrange for us to see the relevant Hawking’s iconic wheelchairs has External Affairs, Chris James said:
professionals quickly reassured us that provided a surprise cash boost “Like everyone else we are
we would be supported as the disease for the MND Association after the lot overwhelmed by the outcome of the
progressed.” smashed through its estimated sale price auction which is testament to the
The Association’s Regional Care at auction. regard in which our late patron Professor
Development Adviser, Kevin Thomas The wheelchair, which was owned Hawking was held by people around the
said: “We were quietly confident in the 60s by the late Prof Hawking, an world. We are so grateful to the Stephen
the posts would be funded as Association Patron, who lived with MND Hawking Foundation and Professor
the evidence we had produced for more than 50 years, sold for £296,750 Hawking’s family for their ongoing
demonstrated the difference the making it the third most valuable item support of the Association and for the
service is making to people affected sold in a Christie’s online auction in 2018. incredibly generous donation we will
by MND and health and social care It had been expected to sell for between receive as a result of the auction.
professionals. It is also providing £10,000-£15,000. “This money is a very welcome boost
opportunities for cost efficiencies and The money raised from the sale will be which will help us to continue to support
for wider learning.” split equally between the MND Association people with MND and fund research into
and the Stephen Hawking Foundation. a treatment and ultimately a cure.”
8 www.mndassociation.org
• Saturday 9 February, Birmingham • Saturday 22 June, Manchester
• Saturday 21 September, Exeter • Saturday 12 October, London
2019 regional conferences…
come and meet us
I’m delighted to invite you to one of our forthcoming regional conferences which this year will
be held in Birmingham, Manchester, Exeter and London (more details at
www.mndassociation.org/regionalconferences).
If you are living with MND or are a family member, friend or carer of someone with MND, if you
are a volunteer or if you have a personal or professional interest in the MND Association, then
these events are for you.
Conferences are held regionally to enable as many people as possible to attend.
Our staff and vounteers will be attending and look forward to meeting and hearing from you.
Sally Light, Chief Executive
The programme
Each regional conference programme is tailored to local interests and issues affecting
people with MND, so content may vary. However, typically, they will include the
opportunity to hear and ask questions about the latest care services and support
available and the most up to date information about research.
There will also be an opportunity to sample innovative products and services offered
by exhibitors and, most importantly, plenty of time to talk to MND Association staff,
volunteers and meet other people affected by MND.
There is no fee to attend any of our regional conferences. Lunch and refreshments
are provided during the day and free parking is available at every venue.
Book your place now You can register to attend in any of the following ways:
Web: www.mndassociation.org/regionalconferences
Email: conference@mndassociation.org Telephone: 01604 611837
www.mndassociation.org 9
Become a trustee and help
us fight back against MND
Do you have what it takes to become a trustee? If you are passionate about the
Association’s work and are interested in joining the Board of Trustees we want to hear from
you. With elections just around the corner, Thumb Print explains more about the process
and speaks to three serving trustees about how they became involved.
F
OR Heather Smith, the journey to becoming a trustee began in long held a fascination in the escalating power of hi-tech.
2009, when her partner, Steve was diagnosed with MND. “Now, one year after being diagnosed with MND, with my legs
After his death in 2012, Heather decided to volunteer for paralysed, my arms almost gone, my lung capacity down to 50%,
the MND Association, as part of the North Wiltshire Group and as a and my neck weakening, I am really fascinated at how hi-tech can
Campaigns Contact. help those of us living with MND. What an amazing opportunity to
She said: “Over time I felt as though I was becoming increasingly be part of those discussions.”
involved with the Association and I was privileged to appear in the
N
Awareness Month campaign, Shortened Stories in 2016. ik Sharma is a leading neurologist and neuroscientist at UCL
“The same year there was an opportunity to stand as a trustee Queen Square Institute of Neurology at University College
and I decided to put myself forward as it felt like the right time. I London with a specific interest in motor neurone disease.
wanted to use my experience to help as many people living with He was co-opted onto the Board of Trustees in 2016.
and affected by MND as possible. I have found that becoming a He said: “I had interacted with the Association in the past
trustee has helped me to develop a range of new skills.” through my work at the MND Care Centre and research. Becoming
She also said that the Association actively supported those a trustee has been useful in helping me to understand more about
trustees who are living with MND by offering the opportunity to the extraordinary effort that goes into raising every single pound
take part in meetings remotely. and making sure it is used in the best possible way for people
She said: “It really doesn’t matter what your background is, all living with MND.”
that matters is that you want to make a difference.”
How you can become a trustee?
P
eter Scott-Morgan was diagnosed with MND a year ago and You must already be a member of the Association and be
was elected to the Board in July last year. nominated and seconded by existing members.
He said: “It’s a tremendous feeling being a member of Nominations for election in June are now being taken. You
the Association’s Board of Trustees. On the one hand, my fellow can apply by completing the form which can be found in this
trustees and the directors – who also attend the quarterly Board edition of Thumb Print or you can visit www.mndassociation.org/
meetings – are a friendly, welcoming, diverse and genuine bunch; trustees2019.
they are not in the least intimidating. You will be asked to give some information about your
“On the other hand, our responsibilities and decisions in terms of knowledge and experience of MND.
the Association’s future are sometimes as critical and far-reaching The closing date for nominations is 18 April, our members then
as it is possible to be. We are, for example, ultimately responsible vote and successful candidates are informed of the result prior to
for the strategy the Association follows and it is this aspect of my the AGM in July.
trustee role that has become my passion above all others. I have Our new trustees formally take up office at the AGM on 13 July.
Trustee Open Day – 27 March 2019
If you’re passionate about improving the lives of those affected by MND, you
could help guide the Association’s future.
Our trustees are volunteers who are responsible for ensuring that the mission
and long-term aims of the Association are met. Their role is to take a national
perspective to meet the needs of people affected by MND. Trustees have the
ultimate legal responsibility for directing the affairs of a charity, and ensuring
that it is solvent, well-run, and meeting the needs for which it was set up.
To find out more about the role of a trustee and to get an overview of the
structure and nature of the Association, please come along to our pre-
nomination open day to be held in Northampton on 27 March 2019.
To book your place, or for more information,
email governance@mndassociation.org or telephone 01604 611 844.
10 www.mndassociation.org“I
want to start the new year by
thanking all of our members for
their incredible work and support
during 2018.
“Whether you are one of our
extraordinary fundraisers, one of
our loyal volunteers who offers their
time freely to support our work or a
dedicated campaigner fighting for
the rights of those affected by MND -
thank you for all that you do.
“This year, of course, the Association
will mark its 40th anniversary – a time
to look back at our achievements so
far and a time to remember the unique
contribution of all of our supporters,
not least our founder members.
“Forty years ago they faced the
devastating effects of MND alone, such
was the lack of information available to
them at that time. In spite of their own
personal challenges and spurred on by
an overwhelming and selfless need to
help others, the Association was born.
“It is testament to them that since
then, the Association has grown
beyond all recognition, offering help
and support to people living with and
‘Your support is as affected by MND across England,
Wales and Northern Ireland. While
much has changed over the past 40
years, the work of our volunteers and
supporters remains as important now
important now as it as it was then.
“I am immensely proud to be Chair
of this amazing charity at what is such
an important time in our history.
“I hope you will continue to be
has ever been’ inspired to support the Association
in any way that you can during 2019
as we renew our commitment to our
vision of a world free from MND.”
Richard Coleman, chair of the Board of Trustees
Could you be a
carer champion?
This year we are trialling a volunteer role focusing on supporting
carers and former carers of people with MND. Based on local needs,
Carers’ Champions will help provide information about services and
identify opportunities to connect carers and bring them together.
For more information and to find out about taking part please visit
our website www.mndassociation.org/carerschampions
or telephone 01604 611681.
www.mndassociation.org 11yourstories
‘Don’t hesitate to walk
through that door’
After being diagnosed with MND in 2011, Phil Wathall decided to write a booklet
detailing his personal experiences of MND. Here, he talks about the friendship and
help he has received from his local MND Association support group.
“A
FTER diagnosis in October 2011, listening to a conversation when Mapperley Plains, Nottingham. By this
I did as many others do and suddenly she heard the unforgettable time, I was attending my local support
went looking for answers. phrase, ‘MND.’ group in Derbyshire and as Helen lived in
“I trawled the internet for information, “Not wanting to miss a trick and be Nottingham we decided to give it a go.
support - anything really - but never left out, Helen struck up a conversation “By the time we had decided to attend
thought in a million years a solution with one of the ladies called Jackie, and looked up the details of the next
would come through a local hairdresser. who proceeded to tell her about her meeting, December and Christmas party
“The following summer, my partner, brother John who had MND and the time was upon us, so not wanting to
Helen sat in her local hairdressers very good support group he went to at spoil the atmosphere and gate-crash, we
thought the new year would be the ideal
time and pencilled it in to the invisible diary.
“When we arrived in the car park we
sat there for 10 to 15 minutes, a little
apprehensive about entering. In for a penny,
in for a pound, we reluctantly got ourselves
out of the car and made our way towards
the building where we were greeted by
Godfrey, one of the kindest and funniest
men we had met in a long while.
“I can only encourage people
not to hesitate as we did when
deciding to walk through the
doors and to enjoy it as much as
we, and many others, do.”
“He welcomed us and escorted us
through the door of the Second Thursday
Group, finding us seats and organising us
a cup of tea each before the start of the
meeting.
“We’ve not really looked back
since, recently celebrating our fourth
anniversary of attending and enjoying the
Second Thursday Meeting, only missing
around three.
“I can only encourage people not to
hesitate as we did when deciding to walk
Phil pictured at the Second Thursday Group’s Christmas party through the doors and enjoy it as much
as we, and many others, do.”
Has an MND Association branch or group made a difference to your life? Send The next meeting of the
your stories to clare.brennan@mndassociation.org Nottinghamshire Branch’s Second
Read more from MND Association branches and groups across England, Thursday Group will be held on 14
Wales and Northern Ireland on pages 34 and 35. February. For more information visit www.
mnd-notts.org.uk/SecondThursday
12 www.mndassociation.orgyourstories
When Teresa May’s partner
of 33 years, Lynn Ashby, was
diagnosed with MND she
turned to fundraising to
help her cope. After raising
£9,000 in just two years,
thanks to the support of
family and friends, Teresa
wrote to Thumb Print to
share their inspiring story.
“M
y partner Lynn ‘Ash’ Ashby
was diagnosed with MND in
July 2016 at the age of 59.
“She was fit, a volunteer of the year
for Help the Aged and loved gardening,
walking and a good lunch. She was an
army javelin champion and hockey player. Teresa, centre, pictured with friends at the London to Brighton Cycle Challenge
‘Laughter keeps us going
through the difficult days’
“We met 33 years ago in the army in an in a 12-hour exercise event raising £445, electric wheelchair to get around, but
era when being in a same sex relationship Glynn, a former army friend invited 22 underneath the lack of mobility is the
was banned in the forces, so we gave up others from all corners of the country to a woman who has been my best friend,
our careers to be together. We have been beach barbecue which raised £1000, Jim partner and soul mate. We still fight on,
lucky to have an amazing, full life and even Ratcliffe from chemicals company, INEOS, the local Oakhaven Hospice has been just
luckier to be surrounded by some really sent me £500 after reading my letter, and amazing. ‘Hospice’ can be a scary word, but
special friends. another friend donated a large single Lynn attends as a day patient each week
“In 2017 we completed some items on cheque. Our niece Lesley, who has asthma and we call it her spa day as she always has
our bucket lists and travelled, determined completed a fun run and Jen and Dave a massage on her hands and feet.
to keep MND out of our heart and heads. Edwards completed two sponsored walks.
“I then decided to give something back
to the MND Association and also our local “I have always been a glass
hospice which has held out a comforting half full person while Lynn can
arm and wrapped us up. In 2017, we raised be a glass half empty person
£2,290 for the Association’s Southampton but together we are a positive
Branch through sponsored walks, a fun fighting team.”
run and by selling some of my artwork. In
2018, at the age of 56, I decided to take on A local magazine also did an
the London to Brighton cycle challenge. I article which led to three local shops
had never done anything like this before donating. Together with money handed to Teresa, pictured left and her partner, Lynn
and it was a real challenge, particularly as me by our neighbours 2018’s total reached
l have had stem cell therapy on my knee £7,380. This added to the money raised in “I have always been a glass half full
and a hip replacement. My Just Giving 2017 makes more than £9,600. person while Lynn can be a glass half
page was set up and l started writing “I have found that committing to empty person but together we are a
about Lynn, talking to friends and writing fundraising helps me to deal with the positive fighting team. We keep laughing
letters, while cycling locally around the thought MND is slowly trying to take my and even though there are many difficult
New Forest to get my bum bike-ready. partner away from me. She has a rig fitted, days, Lynn is alive, has a mind of her own
“Our friends Michelle and Virg took part uses a ventilator at night and needs her and literally is living in the moment.”
www.mndassociation.org 13Michael sets sail on a
fundraising trip to remember
S
ETTING sail on a tall ship adventure turned into a unique
fundraising opportunity for one man who is living with MND.
Michael Martin was given the chance to sail from Cardiff
to Poole on board the Jubilee Sailing Trust’s ship Lord Nelson, after
being donated a place by Jacquie Wheeler, an MND Association
fundraiser whose employer, Barclay’s, sponsored the ship last
September.
Jacquie approached the Association’s West Yorkshire Branch to
find a willing candidate and having often dreamed of sailing on
board the Lord Nelson after seeing her in port in Oban in 2014,
Michael quickly took up the offer.
He said: “I decided I would use the trip to do some fundraising
of my own. I had seen a newspaper article showing someone in
a wheelchair getting to the crow’s nest on the Lord Nelson. I am
terrified of heights, so thought I would challenge myself to do
the same.
“We sailed from Cardiff to Poole
from 20-24 September. Everyone sails Michael is hoisted up to the crow’s nest
as crew on the ship, so it’s no luxury
cruise! I was assigned to a watch team rounded Land’s End we picked up a following wind and the ship
with six others, one of whom, Robin, went at double speed, so in the end we arrived at Poole early.
was designated as my buddy. As it “I can’t praise the crew enough for the care I was shown – my
happened, the weather conditions buddy Robin was a stalwart and everyone else was there to lend
at sea were so atrocious that we a helping hand when my wheelchair was careering over the
were port-bound in Cardiff for two deck in various directions. I wasn’t sure how I would cope with
days. These two days were not wasted this voyage, but I should not have worried. Many thanks to all
as we were quite literally shown the who supported my fundraising as well as all those who looked
ropes and there are hundreds of out for me during the voyage. I have raised £1,800 for the MND
Michael on board Lord Nelson them on a tall ship. This was also my Association.”
opportunity to get to the crow’s nest so that I could enjoy the rest
of the voyage. For more information about the Jubilee Sailing Trust visit
“We set off early on 22 September. The weather wasn’t too bad www.jst.org.uk
going down the Cornish coast until we reached Land’s End when Do you have a story to share about a fundraising
we were in the midst of a gale. Tallships don’t have stabilisers so adventure? Email clare.brennan@mndassociation.org
the ship’s motion was quite ‘interesting’ at this point. After we
The smile says it all as Tim tries surfing for the first time
A
MAN from Jersey who is living with MND was able to
experience the joy of surfing for the first time thanks to
the support of a charity based in the Channel Islands.
Tim Phillips was diagnosed with MND in 2008 after
experiencing problems with his speech and pain in his hands.
He explained: “My Mum thought it was arthritis, but we
decided to go and see the doctor. He did a lot of tests and I was
finally diagnosed with MND in June 2008. We were shocked as we
thought my symptoms were to do with a fall I had the previous
year, but we were determined to make the best of things.
“One of my care nurses is a keen surfer and a volunteer for
the charity, Healing Waves. She put my name forward and I was
accepted. It was a wonderful experience and I am hoping to
do it again. I would also like to do a sky dive, which would be
Tim enjoys surfing for the first time really exciting.”
14 www.mndassociation.orgProfessional education Make 2019 the
year you join
opportunities for 2019 #TeamMND
T I
ALKING about end of life can be
F your New Year’s resolution has been to
challenging for those affected by
get involved in raising money for the MND
motor neurone disease and the
Association you’ll find all the inspiration
professionals who support them.
you need inside our brand new Events
In 2019, Let’s talk about end of life in
Diary, free inside this edition of Thumb Print.
MND is the main theme of the MND
As well as suggesting ways for you to get
Association’s masterclass programme for
involved, you’ll also be able to read some
professionals.
incredible stories from our fundraisers who
Palliative care specialists Professor
go to extraordinary lengths to raise money
Christina Faull, Dr Idris Baker and Becky
to support the Association’s work.
Whittaker will facilitate six events
Whether you’re interested in signing up
across England, Wales and Northern
for a run, walk, cycle or swim – or perhaps
Ireland. Professionals can register via the means professionals can apply for up to
something less demanding – our Events
Association website events pages. £250 to support continuing professional
Diary will give you all the information you
Due to demand, we will also be running development activities.
need.
additional masterclasses on cognitive Our education newsletter is distributed
And if you do decide to join #TeamMND,
change and respiratory management. to more than 2000 professionals
the MND Association’s fundraising team is
Since 2017, more than 500 professionals worldwide and we now reach subscribers
here to support you every step of the way.
have attended masterclasses, which as far afield as Australia, New Zealand,
If you’d like to discuss getting involved,
are held regionally to bring education the USA and Canada. Professionals can
then please chat to a member of the team
closer to professionals. We will continue sign up via our education pages www.
who will be happy to help. Contact us
to offer our education bursary, which mndassociation.org/professionals
on 01604 611860 or email fundraising@
For the latest from our Care Information Team please turn to pages 19, 22 and 23. mndassociation.org
Sign up to the register and help
us learn more about MND
A new video and animation are currently College and the University of Oxford.
being developed to explain more about the He said it was vital to build up the level of
importance of the MND Register. data we have about people living with MND,
Featuring Professor Ammar Al-Chalabi from adding that the register would play a vital role
King’s College London and Professor Kevin in that work.
Talbot from the University of Oxford, the video People with MND can join the MND Register
explains more about the reasons for setting through their clinic or by registering
Prof Kevin Talbot
up the register and why it is so important that themselves online.
as many people living with MND sign up.
The animation will provide a step-by-step
In a clip from video, Prof Al-Chalabi said: guide about what’s involved in signing up for
“There are many benefits to having a register. the MND Register and what information is
The most important is that by understanding captured.
where people with MND live and how many
are affected, we can compare that number Both the video and animation resources will
with the services available. If there are areas in be available on our website early in 2019
the country that don’t have sufficient services and we will keep you updated in our Spring
we can lobby for more. The other primary use edition.
is for research – we can see how many people We are grateful for the generous support
Prof Ammar Al-Chalabi
have the disease at any one time.” of the Betty Messenger Charitable
Prof Kevin Talbot explained that the MND Foundation and a family trust that wishes to
Register was a joint project between King’s remain anonymous in funding this project.
For more information visit www.mndregister.ac.uk
www.mndassociation.org 152018: Our year in numbers
As we look ahead to the start of a brand new year, we reflect on some of the Association’s highlights from 2018
and the difference we have been able to make to the lives of people living with MND thanks to your support.
1,200 of the world’s leading 87 groups and branches
MND researchers from 39 offered support to people
countries attended the living with MND in communities 9,384 people are members
Association’s 29th International across England, Wales and of the Association and are the
Symposium on ALS/MND Northern Ireland driving force behind our work
1,668,742 is the number of 480 Association visitors and
unique page views our website 37,392 is the number of support volunteers offered one-
www.mndassociation.org had likes on the MND Association’s to-one help for those affected
during 2018 Facebook page by MND
£2,013,319* has
been claimed through the
Association’s Welfare Benefits 7,381 posts were published 1 new care centre in Stoke-on-
Service on our online care forum Trent opened during 2018
1,082 people living with
MND have signed up to the
Association’s MND Register, 80,208 pieces of our 79 councils have now signed
the first central database of information were accessed up to the Association’s MND
people diagnosed with MND during the past year five point Charter
1529 people with MND were
£1,107,228 in grants was More than 2000 samples have supported by the Association
awarded to people affected now been sent for sequencing through an equipment loan in
by MND as part of Project MinE 2018
*£2,013,319 was the total amount of unclaimed benefits people affected by MND were entitled to. Thanks to the Association’s Welfare Benefits service, this money has now been claimed.
16 www.mndassociation.org‘We are all dedicated to solving the MND puzzle’
Nick Cole, the MND Association’s Head of Research reflects on developments in MND Research
during 2018 and explains why 2019 could be an important year when it comes to clinical trials.
“I
T has been a year since I became Head of Research at
the MND Association, a milestone which provides a great
opportunity for me to introduce myself and explain more
about what has happened in the world of MND research during
2018.
“It has been wonderful to engage with so many researchers
who are dedicated to solving the MND puzzle. Not so long ago I
too was immersed in MND research, heading an MND laboratory
at Macquarie University in Australia. My commitment to MND
research and passion for kitesurfing led me to organise Kite the
Reef, a world record breaking expedition to raise awareness and
funds for MND research. After moving back to the UK, I knew I
wanted to stay in this field and being able to work for the MND
Association offered an incredible opportunity.
“One part of our team focuses on research grants; processing world come together to share their work.
researchers’ applications for funding, which are then rigorously “It’s been an amazing year, with many highs and some poignant
peer reviewed by international advisory panels who recommend moments, including the loss of two big players in Australian MND
the very best for funding. Once funded, the team then monitors Research who I was honoured to call friends – Ian Davis from Fight
the progress and spending of every grant throughout its duration. MND and Adam Regal from Fire Fighters Climb for MND. Both of
As of 31 December 2018, our research portfolio consisted of 91 them sadly died from MND.
grants, investigating causes, models, treatments, biomarkers, and “Ian and Adam, and all those like them, continue to inspire me
improving healthcare. every day. I am immensely proud to be part of the MND Association
“Another part of our team looks after our programmes and as we work towards our vision of a world free from MND.”
partnerships. These include the MND Register which aims to
capture the details of every person living with MND in England,
Wheelchaircars.co.uk
Wales and Northern Ireland, helping us to improve and direct care
to those places where MND is more prevalent, and to guide future
research into the potential factors that might cause the disease.
“Every person living with MND in England, Wales and Northern
Ireland is being encouraged to sign up and you can find details of
how to get involved on this page.
“Another of our biggest projects is MIROCALS, one of the five
clinical trials into MND in the UK, which investigates safety and
effectiveness of low-dose Interleukin 2 as a potential treatment.
Over half of those recruited have entered the main part of the trial.
“This year will be very exciting when it comes to new clinical
trials, as at least two new studies are expected to start recruiting
participants soon. To make sure these results and other research
news is communicated to the public, we put together a monthly
e-newsletter and you can sign up at www.mndassociation.org/
mnd-research-newsletter.
“Throughout the year, we were incredibly busy organising the
International Symposium on ALS/MND; a scientific conference
where researchers and healthcare professionals from across the FREE NO
OBLIGATION HOME
More information DEMONSTRATIONS
For more information about the research the MND Association
is involved in please download our newly-updated Information USED VEHICLES
Sheet E: Research we Fund 2019 from www.mndassociation.org FROM £2995
To find out more about the MND Register visit mndregister.
ac.uk. You can also read more by turning to page 15.
More information about MIROCALS can be find by Tel: 0161 793 5934
downloading Information sheet DA: MIROCALS from Full details on our website,
www.mndassociation.org/research/publications/
informationsheets www.wheelchaircars.co.uk
www.mndassociation.org 17Support for those
affected by MND
F
AMILIES for the Treatment of
Hereditary MND (FaTHoM) is an
initiative led by the Oxford MND Care
and Research Centre to bring together
the community of families affected by
inherited (genetic) forms of MND and
frontal-temporal dementia (FTD).
On 16 April, the next FaTHoM meeting
will take place in Oxford, with expert talks
on issues important to people affected by
inherited MND/FTD.
Anyone whose family has been affected
by an inherited form of MND/FTD is
welcome to attend. Free online registration
is available at bit.ly/2TAxtSA
If you have any questions, please
contact fathom@ndcn.ox.ac.uk
Rugby legend
‘humbled’ by honour
R
UGBY legend Doddie Weir, who is
living with MND, has been awarded
an OBE in the New Year Honours List.
Doddie, a former British and Irish Lion Richard Lodge, pictured left with his close friend, Brian Swinyard
and Scottish international, will receive
the honour for services to rugby, MND
research and the Borders community.
In 2017, Doddie announced that he
‘Poetry has always been my
had been diagnosed with MND and since
then has set-up the My Name’5 Doddie release, my solace and saviour’
F
Foundation to support people living with
MND in his native Scotland, as well as ORMER cancer surgeon Richard Lodge MND. It was devastating and has had
across England, Wales and Northern Ireland. has joined forces with one of his a huge impact, not just on me, but my
In 2018, the MND Association closest friends to create a unique book whole family.
announced it had received a £100,000 full of poetry and inspiring photographs. “Poetry has always been my solace, my
donation from the Foundation to support release and my saviour and has helped
One day I was a consultant me to cope with situations throughout
people living with MND and their carers.
surgeon, responsible for the my life.”
In a tweet, Doddie said: “I am humbled
and honoured, thank you to everyone.” provision of cancer services to While Richard was coming to terms with
more than 1.4 million people, the his diagnosis of MND, his friend Brian had
also learned that he had sarcoma. The idea
Winners celebrate next I was diagnosed with MND.”
for the book gathered pace when Richard
the new year in style Richard, who was diagnosed with MND
last year, has created the book, called Two
was contacted by Brian’s wife Angela who
suggested they should work together ‘to
T
HANK you to all our members who Become One with his friend, photographer make some memories.’
entered and sold tickets for our Brian Swinyard who is living with sarcoma, Richard said: “Brian has been my
Christmas Raffle helping to raise more a rare form of cancer which affects bone friend forever and is an international
than £105,000 to support people living and soft tissue. photographer so we decided that a book
with MND, their carers and families. The money raised from the sale of could be a unique way of combining our
Congratulations to all our prize winners. the book is being donated to the MND work.
Gemma Hammond won the first prize of Association and Sarcoma UK to thank both “The book is a celebration of life and is
£5,000; the second prize of £1,000 went to charities for their continuing support. designed to give the reader the space to
Christine Drain and Margaret Cooper won Richard said: “One day I was a consultant have their own thoughts and feelings. It is
the third prize of £500. surgeon, responsible for the provision of full of hope.”
For the full list of winners, please visit cancer services to more than 1.4 million Two Become One is available to buy at
www.mndassociation.org/raffle people, the next I was diagnosed with www.amazon.co.uk
18 www.mndassociation.orgInformation updates
Information sheet 2C – has been updated to better
Primary Lateral Sclerosis help people with MND
(PLS): This sheet has been communicate their needs to
revised to ensure it remains hospital, hospice and care
up to date. The sheet agency staff.
provides information on
this rare, slow progressing
form of MND and managing
Motor neurone
symptoms. disease checklist
To help you manage your
condition and think ahead
Information sheet 6B –
Complementary therapies: Introduction to motor
Finding your way with this sheet has been revised neurone disease (MND):
bereavement: We have to ensure it remains up to Our short overview about
converted our information date. It provides an overview MND has been revised to
sheet on bereavement support of some complementary ensure it remains up to date.
into an A5 colour booklet. This therapies that some people This A5 guide is designed
includes information about with MND find helpful. to help people when first
support for family members We are pleased to have diagnosed. MND Checklist: This write
and friends after the death of gained endorsement from on questionnaire has been
a loved one, but also shared the Complementary and updated to better help people
experience from others who Natural Healthcare Council with MND think about their
Understanding
are finding ways to cope with (CNHC) for this information my needs: future care needs.
grief. See pages 24 and 25 for sheet. a personal record to
help you support me with
motor neurone disease
more details.
Information sheet 7B – You can download our
Information sheet 1B – Tube feeding: This sheet resources at:
Health information in went through a major www.mndassociation.
other languages and version change in 2017 to org/publications or order
formats: This sheet has been include questions about printed copies from our
updated to explain how to aftercare following insertion MND Connect helpline:
get information in other of a feeding tube. It has now 0808 802 6262,
languages or formats such as been checked and updated Understanding my needs: mndconnect@
braille, audio or large print. to ensure it remains accurate. This write-on short booklet mndassociation.org
The perfect stew for cold winter nights
Eating and drinking is a pleasure we all take for granted, but one which can
prove challenging for those living with MND. To help put the fun back into
cooking, the MND Association has created an eating and drinking guide
featuring hearty, wholesome recipes which can easily be adapted to suit
individual needs. This Provençal Bean Stew is nutritious and easy to prepare,
perfect for cold winter nights.
Provençal Bean Stew 400g tin of chopped Method:
tomatoes Have you enjoyed this recipe? Don’t
Preparation time: 10 minutes 1. Fry the onions until soft
Cooking time: 30-40 forget the MND Association’s guide
Two tablespoons of tomato 2. Add the tinned tomatoes
minutes puree Eating and drinking with motor neurone
with their juice, plus the
Serves: One to two people disease is available to download
One teaspoon of chopped other ingredients and a little
additional stock. or order from our website www.
or dried marjoram
Ingredients: mndassociaton.org by clicking on the
One bouquet garni or one 3. Simmer until all the Info Resources button at the top of
400g tin of haricot beans ingredients are soft and
(plain, rather than in sauce) teaspoon mixed herbs the page and following the links.
tender.
Two onions, sliced Two tablespoons of olive oil
This may be easy enough to Have you got a recipe you would like
One red pepper, de-seeded Up to half a pint of eat once cooked, but if you to share with our readers? Email
and sliced vegetable stock find the beans too husky, clare.brennan@mndassociation.org
Two cloves of garlic, crushed Salt and pepper mash or blend until smooth.
www.mndassociation.org 19You can also read
