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The magazine of the Motor Neurone Disease Association
Thumb
Print Summer 2021
Exercise and MND:
Your questions answered
Full story: pages 4 and 5
Introducing MND Association Membership: Page 10
Fo
or MND
GAZE
COMPATIBLE
2 www.mndassociation.org
, part of the family
Pages 10 and 11
Building a community that’s
strong and united
Introducing our new MND
Welcome…
Membership
A huge thank you to all our
Page 15 members and supporters who
Serving up a fundraising
challenge to remember helped paint their social media
Jeremy Daubeny on why he’s channels blue and orange to
raising money for the Association mark Global MND Awareness Day
Page 16 on 21 June.
Meet our new trustees It was amazing to see the whole
Association Board welcomes MND community come together once more for this special
Usman Khan and Jim Marshall event, linking up with MND associations around the world to
Pages 18 and 19 raise awareness of this devastating disease. Across the three
Are you cool enough? nations, iconic buildings were lit up by a wave of blue and
The latest news on #IceFoot92 orange light – an extraordinary and incredibly moving act of
Pages 34 and 35 solidarity which I know means so much to all those affected
Spreading a little love and by MND, particularly in these difficult and uncertain times.
kindness As we begin to emerge from lockdown and restrictions
Branch distributes goodie bags hopefully start to ease, the MND Association will continue to
during lockdown
provide care and support to all those living with and affected
Pages 36 and 37 by MND.
Thank you! As an example, we are developing the support we offer to
Saying thank you to our amazing
fundraisers people who are newly-diagnosed with MND, working with
colleagues in care centres and networks to arrange support
meetings which people can access online from their own
homes. Our incredible volunteers are also continuing their
important work in communities across the three nations,
Thumb Print is the quarterly magazine of the
Motor Neurone Disease (MND) Association, supporting people living with MND and carers through
Francis Crick House, 6 Summerhouse Road, regular phone calls, texts and drop-in sessions online.
Moulton Park, Northampton, NN3 6BJ
Reg. charity number 294354. Our award-winning range of information sheets and
Editorial and advertising enquiries:
publications are available online and support from our
Clare Brennan, Editor, 01604 250505 helpline MND Connect is always just a phone call away –
editor@mndassociation.org
0808 802 6262.
If you have comments or feedback about
the magazine and its content, please do not If you are in need of our help, please do not hesitate to get
hesitate to get in touch.
in touch.
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
The MND Association is always here for you.
those products or services will be provided, funded or available via the
Association. All content © MND Association 2021.
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
‘Benefits of exercise
Despite suggested link between
those with genetic risk
E
XPERTS are urging people not to is small and far smaller than the benefit
stop exercising after a new study of exercise or the risk of heart disease
suggests a link between frequent or other conditions, but important for Questions and
strenuous exercise and the chance of
developing MND in those who have a
what it tells us about how MND might
start.”
answers
genetic risk. The Association’s Director of Research Will exercising increase my risk of
MND specialist, Professor Ammar Development, Dr Brian Dickie said: getting MND?
Al-Chalabi has said ‘the benefits of “In recent years, understanding of The research suggests that prolonged
exercise still outweigh the risks’ after the genetics of MND has advanced, and frequent strenuous physical activity
research conducted by the University of but there has been little progress in may be a risk factor in MND, as exercise
Sheffield suggested a causal relationship identifying the environmental and causes changes in the activity of a
between exercise and MND. The study lifestyle factors that increase the risk of number of genes that have previously
shows that high intensity physical developing the disease. been linked to the disease.
activity could contribute to motor “This is, in part, because the genetic However, these findings do not
neurone injury – but crucially only in and the environmental studies tend to provide sufficient evidence to clearly
individuals with a predisposing genetic be carried out in isolation by different state that exercise increases risk in
profile. research teams, so each is only working all forms of MND. Indeed, in the vast
“This study shows that, with part of the jigsaw. The power of majority of cases it is unclear if there is
particularly in people who this research from the University of any risk or at most, a very subtle risk.
already have a genetic Sheffield comes from bringing these The research does provide stronger
tendency to MND, exercise can pieces of the puzzle together. evidence to suggest that the risk may
nudge someone a little closer “We need more robust research like be higher in people who also carry
towards developing MND. The this to get us to a point where we really certain risk genes and who may already
risk is small and far smaller than understand all the factors involved be ‘genetically primed’ to developing
the benefit of exercise or the in MND to help the search for more MND later in life. This view is based on
risk of heart disease or other targeted treatments.” the finding that people who carried
conditions, but important for The new research adds to the global an alteration in the C9orf72 gene (the
what it tells us about how MND
research effort to identify which most common inherited MND gene)
might start.”
individuals based on their genetics are developed disease symptoms at an
Scientists at the University of Sheffield at risk of MND. In time it is hoped that earlier age if they also participated in
believe the pioneering study represents medical professionals will be able to strenuous leisure activity.
a significant step towards unravelling offer advice to MND patients and their Based on these findings in C9orf72
the link between high levels of physical families about the risks so they can MND, the researchers’ theory is that
activity and the development of MND. make personal decisions about their excessive exercise is only potentially
Ammar explained: “This study shows exercise habits. detrimental in people who already carry
that, particularly in people who already a pattern of risk genes for the disease,
have a genetic tendency to MND, You can find the latest information but much more research will be needed
exercise can nudge someone a little about this story on the Association’s in order to prove that this is the case.
closer towards developing MND. The risk Research Blog at mndresearch.blog
4 www.mndassociation.org
still outweigh risks’
frequent exercise and MND in
Should I stop exercising? out or recommended. If you have that was not the focus of the study, so
The relationship between exercise and questions about genetic testing, you further research in that particular area
risk of MND is so much more complex should discuss the options and process will be needed.
than simple ‘cause and effect’. The current with your GP.
evidence doesn’t provide a clear enough I’m training for a marathon to run
picture to make recommendations. I have family members with MND. in memory of my relative who died
However, the researchers stress that for Does that mean I should stop of MND. Is it safe for me to carry on
the majority of individuals, the numerous exercising? training?
health benefits of a physically active The researchers do not make any The researchers do not make any
lifestyle will markedly outweigh the risks. recommendations on exercise. However recommendations on exercise, but do
they do stress that the numerous health stress that the numerous health benefits
What type of exercise puts me most benefits of a physically active lifestyle of a physically active lifestyle markedly
at risk? markedly outweigh the risks. outweigh the risks – and outside of the
The study doesn’t include information on c9orf72 inherited form of MND any risk is
the specific types of exercise carried out. What is the increased risk to me if I likely to be low.
have the gene type and I exercise?
What part of exercise causes the The researchers were not able to Is the MND Association going to
increased risk? calculate the level of increased risk fund further research around this to
The research considered ‘high-intensity, as the people with the C9orf72 gene find out more? If not, why not?
frequent, leisure-time exercise’ carried variant involved in the study had all Research in this area has become so
out earlier in life. There is not information been diagnosed with MND. What they much more sophisticated in recent
on the specific types of exercise carried have reported is that people who had years, thanks not only to the incredible
out. reported a high level of strenuous advances in genetic research and
physical exercise earlier in life were more gene-hunting technology, but also
How would I know if I had the gene likely to develop the disease at an earlier developments in computing technology
type that is a risk factor? age than those who reported a more and artificial intelligence. The Association
The C9orf72 gene is usually found in sedentary lifestyle. has funded a considerable amount of
people where there is a clear family genetic research over the past decade,
history of MND and/or a related condition, There is lots of research into possible for example as a key partner in the
frontotemporal dementia (FTD). links between rugby and football international Project MinE programme,
and neurological conditions which and we will continue to support
Can I be genetically tested? seemed to be around heading the innovative studies that aim to combine
Genetic testing is usually performed ball or head injuries. Is this the same the genetic pieces of the jigsaw with
as part of the diagnostic process only research? epidemiology research to build up
where there is a family history of MND The analysis of this study didn’t show a clearer picture of the complex and
or FTD. If there is no family history then any evidence to support a link between subtle factors that predispose people to
testing is currently not usually carried head injury/trauma and MND, but developing MND.
www.mndassociation.org 5
‘My dad died when I was 12.
Now I’m finally finding my way’
Matthew Reynolds was only 12 when his father died
from MND. In this moving account, Matthew, who helped to
care for his father, recalls the impact of his death and how
his perspective has changed over the years.
“I
was 12 years old when my dad died from MND. Now at what he was getting at. Then my viewpoint shifted, to
31, I’ve reached the age he was when he died and I have appreciate just how selfless his outlook was, in wanting to
my own baby son, Haydn. Becoming a dad has added support all those around him and make them feel they would
a layer of emotion and perspective which has enabled me to find a way through.
see things differently, looking back through my father’s eyes, “I’m finding my way now. It’s been a long fight to get to this
rather than a lens of not understanding. Anger has been ever- point, but I was only really fighting with myself. Although it
present through my journey of bereavement, but through this has taken highs and lows to realise it, I can also accept that
darkness I can finally see a silver lining. it’s okay to sometimes be in a place that’s not okay. Finding
“Bereavement stopped me from maturing at the rate maybe myself in a position to speak those words out loud is a huge
others do. Everything was upsetting, and I was constantly relief and expressing this has helped me reach this point.
reactive, and at times, selfish. Sport, kickboxing and my coach “It can take many years for young people to work through
helped to steady me, but I still had a long way to go. As the trauma of bereavement and find a way to grow
I’ve grown, I’ve developed emotionally and find around it, but if you can talk things through
myself living past the point my dad knew. It with people you trust, get counselling or
sometimes feels strange, but the sense of open yourself enough to truly explore what
maturity is welcome. it means, it can help you discover who
“The path I’ve taken over the last you really are.
two decades has been challenging “With my partner Kayla, I now have
– self-destructive at times and an opportunity to pass on some of
fulfilling at others – but driven by my dad’s wisdom to Haydn as he
fairly self-centred motives. It’s always grows.
been about me, how I feel, how hurt “That’s my silver lining – finally
I am. Yet, in the last few years, battles recognising his wisdom for all that it
with mental health have meant that could offer and realising that it’s still
my perspective has really changed. with me.”
“After the loss of my dad, life wasn’t You can hear more from
easy. I never really understood the word Matthew in our next podcast,
‘resilience’. I’d hear it thrown around which will be released in August.
and think to myself, ‘Yeah, just keep For more information visit www.
going, you’ll be fine,’ but I never actually mndassociation.org/podcast
believed it. Now, when I think of Dad, I’m If you would like support, contact our
beginning to grasp what resilience truly MND Connect helpline 0808 802 6262
means. When he knew his time was mndconnect@mndassociation.org
limited, you’d never see him Find bereavement support
complain, lose his smile information at: www.
or fail to reassure mndassociation.org/
you that, ‘It’ll bereavement and
all be okay’. details on counselling
“Until for children and
Haydn was young people
born, I’m at: www.
not sure mndassociation.
I realised org/parents
6 www.mndassociation.org
MND Matters:
A new way to bring the MND
community together
Wheelchaircars.co.uk
S
OMETIMES emotional, often humorous, but always
honest – that’s what you can expect from the
Association’s podcast MND Matters.
Launched in March, MND Matters offers a blend of
interviews, chat, information and informal advice and is also
helping to raise awareness of the Association’s work.
Since its launch, the podcast has already covered a wide
range of subjects including support for families affected
by MND and the work of our amazing volunteers during
Volunteers Week. In the coming months, the podcast will
cover research, bereavement, mental health and issues in the
workplace faced by people living with MND.
Speaking when the podcast was first launched, the
Association’s Director of External Affairs, Chris James said: “As
well as providing a new way for the community to engage
with our support and information, it is an opportunity for the
wider community to hear the stories of people affected by FREE NO
MND first-hand.” OBLIGATION HOME
The podcast has already been well-received by members DEMONSTRATIONS
of the MND community.
One listener said: “It gives an insight into how things are USED VEHICLES
going to affect families, what sort of things can be done to FROM £2995
raise funds and how funds are needed to enable research to
be carried out. It also helps people with the disease feel as
though they are not alone.” Tel: 0161 793 5934
MND Matters is available to download now from your usual Full details on our website,
podcast platform. To catch up, visit www.mndassociation.
www.wheelchaircars.co.uk
org/podcast
www.mndassociation.org 7
Combinatorial analysis
of an ALS patient cohort
performed by PrecisionLife.
Each circle represents a
disease-associated genetic
mutation; lines represent
mutations that co-occur
in the same patients; and
colours represent distinct
patient subgroups
Understanding AI and its
important role in MND research
“T
HE search for new drugs to help potential drugs that could be taken into
people living with MND is long and clinical trials.”
challenging, but it is one where we Dr Ferraiuolo added: “The use of AI to
are beginning to see hope for the future emerging on several identify new targets or unravel disease mechanisms is an
fronts. New Artificial Intelligence (AI) data analysis techniques extremely fascinating and necessary development. We are
and larger, more detailed collections of patient data have been excited about this collaboration and our initial results.”
pivotal in these advances.” These results are very encouraging and may ultimately lead
That’s the view of Dr Steve Gardner, Chief Executive of to effective new drugs for at least some people with MND. The
PrecisionLife Ltd, a British company which has developed new next stage will be to build on these early results and move into
AI analysis tools that give deeper insights into complex diseases. clinical trials with the goal of finding novel drug treatments that
PrecisionLife is working in collaboration with the Association can slow down the progression of MND.
and alongside MND experts Professor Ammar Al-Chalabi and Dr People living with MND are playing a leading role in this
Laura Ferraiuolo. research. Without their generous donations to the scientific
Through its work with teams of researchers at King’s College community, new research and progress in finding new
London and the Sheffield Institute for Translational Neuroscience treatments would be all but impossible.
(SITraN), PrecisionLife has identified 33 new genes associated For more information on further studies investigating patient
with MND – a significant advance that opens multiple new information and AI in MND, please visit https://precisionlife.
avenues for research. The PrecisionLife team tested potential com/disease-studies/als-patient-analysis. For copies of a poster
drug candidates for five of the new targets and found three showing the MND analysis please contact info@precisionlife.
active compounds that showed potential to improve the survival com
of motor neurones, a key first finding in the hunt for new drugs. The Research Development team at the Association is happy
Professor Al-Chalabi said: “PrecisionLife was able to look at to answer any MND research questions, contact us on
this genetic data in a completely new way and show possible 01604 611 880 or at research@mndassociation.org
subtypes of MND that might respond to specific targeted You can also visit our website www.mndassociation.org/
treatments. Once we confirm these subtypes we can look at research or read our blog posts on https://mndresearch.blog/
8 www.mndassociation.org
With Mission 5000
anything’s possible!
M
ISSION 5000 was one of
the most successful virtual
fundraising events the
Association held last year, attracting
more than 800 participants who raised a
staggering £283,000.
Together, our amazing fundraisers
walked, cycled, danced and even knitted
towards their target of 5,000 miles –
one for every person living with MND
in the UK. By the end of the challenge,
they had smashed the original target,
covering more than 57,000 miles.
“Even though I found it hard
each week, I felt a brilliant
sense of achievement. The
medal I received is a reminder
that we contributed to Mission
5000 and is a good memento
of the achievement that I’ve
helped other MND Warriors.”
Ian Lev, who is living with MND, was
just one of those who took part in
Mission 5000 alongside his neighbour
Andrew. Together they raised more than
£1,000 and covered 50 miles around
North Devon – Ian on his mobility
scooter and Andrew on his bike.
Ian said: “Even though I found it hard
each week, I felt a brilliant sense of
achievement. The medal I received is a
reminder that we contributed to Mission
5000 and is a good memento of the
achievement that I’ve helped other MND
Warriors.”
This year, Mission 5000 is back, and the
Association needs you to take on the
challenge.
Head of Community Fundraising, Ian Lev who is living with MND, took part in our 2020 Mission 5000 challenge
Denise Davies, said “While we hope that captured the hearts of our community Choose how many miles you’d like to
mass participation events will return last year. We were overwhelmed by the pledge towards our 5,000-mile target
this year, we know lots of people won’t number of people who joined in, not and let us know how you’ll be covering
feel comfortable standing on the start least those living with MND who got the distance. You can run, walk, cycle,
line with thousands of others. We also involved to step, scoot or cycle some scoot, swim; whatever you choose! If
understand that virtual events are miles. The incredible sum the team you raise more than £100 we’ll send
simply more convenient for some of our raised was beyond our wildest dreams you a 2021 Mission 5000 medal. You
supporters. and really shows the determination and can sign up now by visiting www.
“Our Mission 5000 challenge really commitment of our amazing supporters.” mndassociation.org/mission5000.
www.mndassociation.org 9
Working together
to build a community
which is united and strong
A
S we take the next by introducing family and
important steps in the friends.
fight against MND we In the coming months,
want to work more closely we will be developing ways
with our members to build a for members to increasingly
community which is united collaborate with staff and
and strong. volunteers to co-design
To do that we are launching solutions and activities in our
a new membership strategy, unveiled at the Association’s work centrally and locally. The variety of experiences and skills
AGM in July. Director of Engagement, Chris Wade explained our members bring will add enormous value to our work.
the aim is to encourage our membersto share their skills The launch of the new Membership Strategy also coincides
and experience to help raise funds and awareness like never with the launch of a new discretionary fee model meaning
before. members pay the amount that feels right for them.
He said: “Together we are an enormously powerful Chris explained: “This new fee model really reflects our
community fighting for the best possible support for new relationship with members. Having a more vested and
people living with MND, and driving towards that world active role in the Association can be reflected in the value
free from MND. Our vision is to enable all members to have you associate to your membership. We also want to grow
the opportunity to put their unique skills and perspectives our membership base, and do not want affordability to be a
together to help shape our work and priorities.” barrier to membership. So you can then choose to contribute
Our members will be invited to embrace a number of as little or as much accordingly.”
new actions including spreading the word by encouraging For more information about MND Association Membership
others to become members, sharing their membership by or to become a member yourself, visit www.mndassociation.
raising awareness on social media, wearing a pin badge and org/membership
10 www.mndassociation.orgSharing your story is a
powerful way to make
a difference
S
HARING your story is a really powerful way to
support the Association and the work we do.
Every day, we work closely with people living
with MND and their families, empowering them
to share their experiences and raise awareness of
what it’s really like to live with MND. By doing so,
Questions and answers the Association can shout even louder about the
needs of people affected by MND, encourage people
What will it now mean to be a member?
to donate and help us to bring about meaningful
We want to give all our members the chance to get more
change.
closely involved in the Association’s work, using their skills and
One of the ways you can get involved is by joining
experience to raise awareness, help strengthen our voice and
our new Speaker’s Network – a group of people
encourage others to get involved in the fight against MND.
affected by MND who are willing to share their stories
We currently have a family membership, will this stay with community groups such as Rotary Clubs, local
the same? branches of the WI or Freemasons.
No, we are simplifying membership with everyone having When you agree to give a talk, the Association will
individual membership. support you by providing information about MND,
How do I get involved with my local branch and group? the wider Association and services in your local area.
When you become a member of the Association, we will However, the emphasis will be very much on your
connect you with your local branch or group. To find your story and how MND has affected you personally.
nearest, just type in your postcode on the website here One of the group’s newest members Miles Pilling,
www.mndassociation.org/find-support said: “I have Primary Lateral Sclerosis (PLS) and it’s
I don’t want to receive a pin badge or membership an invisible disability but I’m really keen that people
card. Can I opt out? understand what challenges this brings. I also want
Yes of course. If you prefer not to receive these items, please to give a voice to people living with MND who can’t
drop us a line on 01604 611860 or email us at membership@ tell their story or want to spend more time with their
mndassociation.org to let us know. family.”
Hazel Carter, whose husband Alan died from MND,
Will I still receive my quarterly copy of Thumb Print
said: “This initiative appeals to me because I want to
magazine?
tell Alan’s story anyway, helping to raise awareness
Yes. If you previously received Thumb Print, you will continue
and funds or garner volunteers. By creating a network
to receive it. If you would like to opt out of receiving Thumb
of speakers, we will be able to pool ideas and share
Print, please let us know on 01604 611860 or email us at
membership@mndassociation.org best practice, which will enable all speakers to do a
better job.”
I currently receive my membership for free, do I have To be part of the Speaker’s Network please contact
to pay for membership now? amy.kilpatrick@mndassociation.org
No, if you are currently entitled to free membership that You may also choose to share your story with other
remains the same. We don’t want cost to stop anyone from readers of Thumb Print – the magazine that helps to
being a part of our membership community, so please pay
bring the whole MND community together.
whatever you are able to – even if that’s nothing right now.
We encourage members to share their experiences
I don’t have time to do the additional activities you’ve or any useful hints and tips with our readers either
mentioned, is this a problem? by writing them and sending them in or by speaking
Not at all. We want membership of the Association to be with Thumb Print editor, Clare Brennan.
for everyone so whether you are looking for support and In the coming months, we will also be inviting
information right now, or would like to do more, everyone is members to become more closely involved in the
welcome and encouraged to join our community. production of the magazine, helping to develop its
I would like to talk to someone further about my look and feel and to ensure it continues to meet the
membership, who can I call or email? ever changing needs of the wider community.
If you have any questions about your membership or want to For more information, or to get involved, you
get more involved, we’re here to help. Simply call us on 01604 can contact Clare directly at clare.brennan@
611860 or email us at membership@mndassociation.org mndassociation.org or by calling 01604 611877.
www.mndassociation.org 11‘I hope I have used this
part of my life wisely’
Diana Colville was diagnosed with MND on 24 March 2020 – the
day after the first lockdown was announced. Here she shares her
experience and explains how she is determined to help others.
“I
’M Diana and I live in Harpenden, Hertfordshire with my for on behalf of our pupils.
husband of 46 years, Mike. We have two sons Rob and, “In August 2018 I fell from a height of about three feet and
Ed who is married to Alex and we have three adorable broke my left wrist badly. I did not lose consciousness or hit my
grandchildren, Daisy aged eight, William aged six, and Ben who head, but my loss of balance remained a mystery. In January
is four. 2019 I fell on the stairs and probably broke ribs. By September
“I qualified as a physiotherapist, having trained at The 2019 I began to notice that my abilities to get up from the floor
London Hospital in Whitechapel. We married in 1974, six weeks were decreasing. My physiotherapy assistant and I would joke
after. For six years I worked as a rotational physiotherapist at about our ages and the fact that we used to be able to stand up
Barnet General Hospital, with short breaks for maternity leave with a child in our arms but now we couldn’t get up ourselves.
when the boys came along. In 1984 I took up a position as On a holiday in Scotland, I had to give up halfway up a hill while
physiotherapist at Mapledown Special School in Cricklewood my son and husband continued to the summit.
working with children with severe learning disabilities and “During Christmas 2019, I stumbled walking across a room
complex needs. full of toys but managed to land on a sofa which broke my fall.
“I retired in 2016 after 32 years of very happy times at the In mid-January 2020 I was beginning to lose my balance much
school. I obviously encountered all sorts of neurological more so went to my GP who diagnosed vertigo. I saw four
conditions over the years, but nothing prepared me for my different GPs who all agreed that it was vertigo or labyrinthitis. I
own diagnosis in March 2020. It seems ironic that after all these kept asking if I should see a neurologist but none of the routine
years helping our parents, here I am applying for the same neurological tests provided any clues. MND can manifest itself
equipment, benefits, badges that for years I have been applying in different ways and does not appear to run a clear-cut course.
12 www.mndassociation.org“After a holiday in Antigua during February 2020, where I removing the bath from the annexe, turning the bathroom
had two more falls, we returned to see our GP. At this stage into a wet room. My husband arranged for a builder friend to
I was referred to an ear, nose, throat consultant locally but come in and start the work immediately. It was completed
as Covid-19 began to take over, we decided to pay to see with only days to spare, when I had to move downstairs a few
a private consultant in Harpenden. He concurred with all months ago. Sound advice.
his predecessors, but suggested I consult with a vestibular “MND is incredibly unpredictable. In my case, my legs were
physiotherapist. She advised that we see a neurologist. the first affected, then my arms which resulted in a fall at the
“Lockdown came on 23 March 2020 and on the 24th I was beginning of November. Feeding has become much more of
diagnosed with MND. On the 25th we tried to celebrate my an issue and I need more and more help. I have found a two
68th birthday. We told the boys straight away and then began handled mug very useful and bendy cutlery very helpful. A
to make plans. plate with raised sides was also useful. Luckily my voice and
“A community physiotherapist came out within hours and eating have remained.
advised us to accept any equipment we were offered. A three- “MND moves in mysterious ways and none of us are the
wheeled walker was delivered that evening and within days same, but I have experienced fasciculations, little twitches
we had a commode, toilet surround, perching seat, hospital in my muscles, which come and go day or night, increased
bed and shower chair. reflexes, particularly startle, spasms and cramps, and overall
“The following week we were visited by a physiotherapist sensitivity of my skin. At one point the balls of my feet were so
from the neurology team, who made referrals to the itchy that the only way I could get relief was to do a twisting
occupational therapist for seating, speech and language action in a standing position on rough carpet.
therapist for voice banking, the dietician, Hertfordshire “As my muscles have wasted, my joints have gradually
Wheelchair Service, the local hospice and assistive technology. become weaker and displaced. I have found the use of
“Our consultation with the occupational therapist was by shoulder supports very useful which I attach over my
Zoom and resulted in her applying for a riser recliner chair shoulders and pull across my chest and back. Following a
for me. It has been and remains the best piece of equipment period of extreme discomfort, I wore this support for about
I could have. It was funded by the Association’s South Herts a week and the pain subsided. It returns from time to time
Branch and the Doddie Weir Foundation. In the early days it but after a day back in the support it disappears. As much as
assisted me to stand up to transfer to my walker, sit upright for possible, I try to keep my flexibility and muscle power within
eating and now it is a very comfortable place to relax in the the confines of pain and tiredness. It is a fine balance as MND
evenings, to stretch out, exercise and to just have a rest. takes over but with the help of a previous colleague we have
“It was also suggested that we contact the Association which shown family members how to move me and which bits
offers a very good advisory service for people in our situation. to stretch.
We were assisted with applying for benefits, advised to apply “I recently had an appointment at the Royal Free Hospital
for a blue badge, and advised to register as a patient with to trial a non-invasive ventilation system as I have been
MND. I also receive a copy of Thumb Print. diagnosed with mild sleep apnoea. The system can be
“The local branch of the Association was informed, and I accessed remotely by the hospital, and they will be able to
receive regular calls from their advisers. Each month we are advise on the best time to start tube feeding as my diaphragm
invited to a Zoom meeting with other patients and carers. deteriorates. This will be a rig system so that my reduced lung
There is a separate carers meeting offered to my husband. They function will not be compromised.
also advised on finding a wheelchair accessible vehicle which “This whole process, although frightening, is extremely
became more necessary quite suddenly. Being over 65 made interesting to me. MND was something I knew very little
us non-eligible for Motability but Herts Mobility recommended about and appears to be quite rare. I am the only patient at
us to contact Allied Mobility in Glasgow. We are now the proud our surgery with this diagnosis at the moment and our GP is
owners of a Peugeot Partner wheelchair-accessible vehicle. learning from her experiences with me.
“My husband brought our wills up-to-date and the Powers “ hope that I have used this part of my life wisely. I have
of Attorney we had always meant to do were activated. I spent written my memoirs pre-MND for my grandchildren,
a lot of time on the phone as I didn’t want people to find close friends and family. I assisted in a research project on
out about my diagnosis on Facebook. I belong to numerous mindfulness for the Association, assisted with videos and
groups in Harpenden and there were a lot of friends from my photos for training purposes and, so far, I have raised £19,000
past and, of course, family. One very good friend, a former for much-needed MND research by shaving my head. Not
nursing sister, suggested that we tell our grandchildren a lot I could do in the circumstances but quite an effective
the truth always. The Association was able to advise my fundraiser.
daughter-in-law on suggested books she could read to our “Research into MND continues but has obviously been
grandchildren. So far, they remain intrigued by my change in affected by the pandemic. Awareness has been raised by
circumstance and equipment. the two rugby players Doddie Weir and Rob Burrow with
“We are extremely lucky in that we have a ground floor their amazing fundraising efforts. Hopefully research will be
granny annexe which we had planned to demolish in order increased into this cruel and unremitting disease so that it can
to downsize. The same friend suggested we get on with be eliminated forever.”
www.mndassociation.org 13An important year for Paul
I
T’S been a busy year for Paul Jameson, but one filled with He said: “We want to help people have a better end of life
amazing memories and ambitious plans for the future. experience and open up a dialogue about death and dying.
While much of the world ground to a halt during the We’re also hoping release a new feature called Aura Memorial
first lockdown, Paul, who was diagnosed with MND in 2017 to enable those whose loved ones have died to share
became involved with Sound Voice – a ground-breaking memories and upload tributes.”
project which saw people affected by conditions such as MND Last year, Paul was awarded a British Empire Medal for his
come together with world class musicians, researchers and charitable services to people living with MND.
healthcare professionals to explore the importance of ‘voice’.
“It was a special and moving day for me,
As part of the project, Paul, whose voice has been affected by something I’ll always remember. I also hope it
MND, recorded a dual aria alongside world-renowed baritone provided an uplifting moment for other people
Roderick Williams, something Paul described as a ‘wonderful’ who are living with MND. I felt total happiness
experience. He also appeared on BBC Breakfast in January to singing with Roddy – I felt totally connected to
share his story. him and as though he was part me. I had my
Paul explained: “It was a special and moving day voice back. It was incredibly powerful for both me
for me, something I’ll always remember. I also hope it and family.”
provided an uplifting moment for other people who are living He said: “The amount I managed to raise for charity is more
with MND. I felt total happiness singing with Roddy – I felt of a testament to the generosity of family and friends. The big
totally connected to him and as though he was a part of me. I fundraiser was climbing Mount Kilimanjaro and playing tennis
had my voice back. It was incredibly powerful for both me and at the top – it caught the imagination and we raised close to
my family.” £100,000. Other MND fundraisers were a charity tennis match,
Elsewhere, Paul who sits on the committee of the West golf day, bridge day, a Christmas sale, Prudential Ride London
Surrey Branch, has launched a new online platform called Aura. 100 cycle and some smaller ones. My thanks to all those
life which aims to help people affected by MND and other people who organised or helped organise these events. I have
terminal illnesses manage their end of life affairs. yet to receive my award, but it is something to look forward to.”
14 www.mndassociation.orgJeremy’s serving up a fundraising
challenge to remember
A
TEENAGER from Tunbridge Wells
is taking part in an epic cycle
around Britain this summer to
raise funds for the MND Association and
to find Britain’s best breakfast.
19-year-old Jeremy Daubeny was
inspired to support the Association after
his mum Clare died from MND in 2019,
just months after his dad Giles died from
a brain tumour.
While travel restrictions put a stop to
the traditional gap year, Jeremy decided
to put his time before starting university
to good use, touring Britain while raising
money for the MND Association and The
Brain Tumour Charity at the same time.
En route on the Tour de Full English,
Jeremy will enjoy traditional cooked
breakfasts, rating them for tradition,
portion size, the quality of the egg or
vegan equivalent and the ambience of
the venue.
Jeremy said: “I’m not aware of a
condition that has a more devastating
impact on a person and their family
than motor neurone disease. The way
it strips away your independence is just
heartbreaking. The MND Association
does such amazing work researching the
disease and helping those who require
support.
My amazing parents were gradually
worn down by both these horrific
conditions.
“We were dealt a terrible set of cards
and I have struggled to come to terms
Jeremy Daubeny
with my grief. But now I feel able to raise
awareness of both conditions and raise into Pembrokeshire. cooked breakfast so that has been a lot
some money along the way.” As Thumb Print went to press, Jeremy of fun and something a bit different.
“I’m not aware of a condition was heading through North Wales and Anything I can do to raise awareness
that has a more devastating had already raised more than £20,000. means so much to me.”
impact on a person and their He said: “The people I have met along Follow Jeremy’s Tour de Full English on
family than motor neurone the way have been amazing. I have a Twitter @TourdeFullEng or donate by
disease. The way it strips away tent and intended to camp but a lot of visiting https://uk.virginmoneygiving.
your independence is just people have offered me places to stay. com/TourdeFullEnglish
heartbreaking.” The kindness of strangers has been If you need support with
Jeremy’s journey began in Tunbridge incredible. My friends have also been bereavement, please get in touch.
Wells in May. Since then, he has travelled joining me for a leg here and there so I You’ll find a range of information
along the South Downs towards haven’t been completely alone. at www.mndassociation.org/
Brighton, to the Isle of Wight, before “While touring Britain, the most British bereavement. Alternatively, call MND
turning inland to the New Forest and thing to do seemed to be enjoying a Connect on 0808 802 6262.
www.mndassociation.org 15‘We’re fighting MND together’
T
HE Association’s annual general of our community has continued
meeting is always an important to shine through, giving us more
date in our calendar and this year opportunities to fundraise, improve
was certainly no exception. awareness and engage with MPs who
Held online for the second time due can help us make a real difference.
to Covid restrictions, the AGM gave As members of our Association,
our community the chance to come we all have a part to play in turning
together virtually to reflect on what our vision for a world free from MND
has been a quite momentous year. into a reality, and with the launch of
There is no doubt that the past few our new Membership Strategy we’re
months have shown the Association encouraging everybody to get involved.
at its very best and the efforts of our Whether it’s introducing the work of
whole community – whether they the Association to family and friends,
are fundraisers, donors, campaigners or should play its part by increasing the raising awareness on social media, or
volunteers – have put the Association in amount it invests in MND research to even sharing your story, you can help
a strong position to push forward with enable us to take advantage of the us raise funds and awareness like never
our plans for the future and with our important advances being made. With before.
vision for a world free from MND. that in mind, we will continue to work On behalf of the Board of Trustees,
Research will, of course, be central to alongside people living with MND and thank you for everything you continue
us achieving that vision and investing our partners at MND Scotland and the to do to support us and we look
in ground-breaking clinical trials will My Name’5 Doddie Foundation to put forward to working alongside you as we
continue to be one of our main priorities pressure on the Government to act continue to fight MND – together.
in the months and years to come. We are through our #United2EndMND campaign. Richard Coleman, Chair of the Board of
also determined that the Government Throughout the past year the strength Trustees
Association’s Board welcomes new trustees
U
SMAN Khan and Jim Marshall were
welcomed to the Association’s
Board of Trustees as co-opted
trustees in May and were formally
introduced to the Association and its
members at the AGM earlier this month.
Jim was inspired to join the
Association to continue the work of
his wife, former trustee Janis Parks who
sadly died in 2019. Both Janis’s father
and uncle died from MND and she
devoted much of her life to supporting
the Association and people living with
MND, through her work as a trustee and
Usman Khan Jim Marshall
as a former Chair of the West London
and Middlesex Branch. affected by MND. It’s an honour to He said: “It’s an exciting time for the
Jim said: “The Association meant a be involved and I hope to use my MND Association and it’s a real privilege
great deal to Janis and I felt I wanted background in finance to support the to be involved. Great advances are
to do something to carry on her work. Association.” being made in MND research, and as
Becoming a trustee seemed a perfect Dr Usman Khan was diagnosed an Association, we want to realise those
way to do that. with multiple sclerosis (MS) 25 years ago opportunities. As important, it is about
“Over the years I’ve raised funds for the and hopes to use his experience and supporting people living with MND to
Association four times by taking part in knowledge of neurological conditions ensure that every minute of every day is
the Ride London event and I’ve always through his work in healthcare and as fulfilled as it is possible to be.”
been impressed by the Association research to further the work of the Meet more of our trustees: Turn to
and the work it does to support those Association. pages 22 and 23
16 www.mndassociation.orgSophia, 11, shares her
talent with the world
Y
OUNG artist Sophia Towart is using her amazing talent to
help raise awareness of MND.
11-year-old Sophia, whose father Alan was diagnosed
with MND when she was just six, used lockdown as an
opportunity to develop her incredible skills by taking part in
online art tutorials with her mum, Dawn.
She explained: “Art relaxes me by letting me splatter all my
thoughts and feelings onto canvas. I have decided to sell some
of the artwork I have created to help the Association which
helps to support families like mine.”
In recent months, Sophia’s beautiful artwork has appeared in
galleries and online auctions. She recently had her first stall at
an exhibition called Prom Art in Grange-over-Sands in May and
Sophia, pictured with her mum Dawn and her dad Alan, who is living with MND
will be taking part again in July. She keeps fans up to date with
She used her new-found skills to develop a collection of her progress through regular updates on social and online.
artwork, turning her favourites into prints and cards to share For more information about Sophia and her art, visit her
with the world. website at www.sophiatowart.co.uk
www.mndassociation.org 17Freezing fundraisers
W
HETHER you’re a fundraiser, a TV presenter, or
even a teacher with a class full of pupils you
would have found it difficult to escape the
#IceFoot92 challenge this summer!
Created by former footballer Len Johnrose, who is
living with MND, #IceFoot92 has seen fundraisers right
across England, Wales and Northern Ireland dipping
their feet into freezing cold water for 92 seconds –
just like footballers to treat post-match foot injuries.
Everyone taking part was then asked to make a
donation of £10 to the MND Association and nominate
their friends.
“This is my way of doing something
positive for people with MND, now and
into the future. There is some research
suggesting a link between sport and
MND, so football seemed like the perfect Len Johnrose
platform to not only raise funds but raise
awareness of the disease too.”
pbell
The challenge created a real buzz in national and Alastair Cam
regional press and on social media with many people
living with MND and famous names braving the icy
water to raise awareness and much-needed funds.
Among them was Good Morning Britain presenter
and Association patron, Charlotte Hawkins and her
colleagues Ben Shepherd and Dr Amir Khan; BBC
Breakfast hosts, Louise Minchin, Dan Walker and Sally
Nugent; and football stars Dion Dublin, Gary Neville and
Steph Houghton MBE.
Elsewhere, the challenge captured the hearts of
fundraisers in communities across the three nations,
including a number of schools, police forces and a
whole street in Crosby taking part together. A team
of staff from the MND Association, along with Chief
Executive Sally Light and new trustee Usman Khan, also
joined in the fun.
Len said: “This is my way of doing something
positive for people with MND, now and into the future.
There is some research suggesting a link between
sport and MND, so football seemed like the perfect
platform to not only raise funds but raise awareness of
the disease too.”
With the warmer weather now upon us there has
never been a better time to take part in an #IceFoot92
challenge of your own to help Len to reach his target
of £92,000. Simply film yourself standing in a bucket of
ice water, donate £10 by texting MNDLEN to 70085 and
nominate your friends. Then share your film on social
media using the hashtag #IceFoot92 Owain Wyn
Evans
For more information about how to take part head to
our website at www.mndassociation.org/icefoot92
18 www.mndassociation.orgbeat the big chill! wkins
Charlotte Ha
Steph Hought
on MBE
Golf Club
Oak Stratford
Jeremy Vine and Storm Dion Dublin
www.mndassociation.org 19Coming together to
shine a light on MND
O
N Monday 21 June, the global MND community came Northern Ireland encouraged local councils to shine a light on
together virtually to mark Global MND Awareness Day. MND by batheing iconic local landmarks in blue and orange
Despite restrictions put in place as a result of the light.
pandemic, the Association was still able to join forces with MND Among them was Smeaton’s Tower in Plymouth which
associations around the world to raise awareness of MND and glowed blue and orange throughout the night as well as
highlight the amazing work being done to drive MND research Stormont, the seat of Government in Northern Ireland,
forward. Enniskillen Castle and the iconic Titanic Belfast.
Using the hashtags #GlobalMNDAwarenessDay and During the day, staff at the Association’s offices in
#DrivingMNDResearch, social media turned blue and orange for Northampton wore orange and blue while young supporter
the day as many of our supporters took to Twitter and Facebook Sophia Towart hosted an online auction of her art to help raise
to share their stories. money.
Elsewhere, branches and groups across England, Wales and For more about Sophia’s story, turn to page 17.
20 www.mndassociation.orgMeet the puppies who are
fighting crime – and MND
E
LEVEN adorable springer spaniel
puppies are not just playing a
leading a role in the fight against
crime but also the fight against MND.
The puppies, who will eventually help
support the work of West Midlands
Police, have all been named after MND
heroes, helping to raise awareness of
MND on Global MND Awareness Day.
Among them is former Assistant Chief
Constable of West Midlands Police Chris
Johnson who was diagnosed with MND
in 2018. Father-of-two Chris, continued
to work for the force for almost two years
before his retirement and has continued
raising funds and awareness of MND
ever since.
One of the puppies was even
named Cheeky in his honour – after
the nickname given to him by his
colleagues. The others have been
named:
Doddie – after former rugby union Rollo – after retired sergeant John to name some of our new police dogs
player Doddie Weir, who is living with Rollason who was nicknamed ‘Rollo’. He after MND heroes.
MND was diagnosed with MND in 2018 and “We felt privileged when Chris
sadly died in May. approached us with idea – and it was
Burrow – after former Leeds Rhinos then we set about organising our
Chief Superintendent Lee Wharmby
player Rob Burrows MBE, who is living own surprise by calling one after his
said: “We’re incredibly proud to be able
with MND nickname.
Darby – after former Liverpool, Notts “It was a special moment when he met
County and Bradford City footballer Cheeky for the first time and we hope all
Stephen Darby, who is living with MND our dogs will go on to be as inspirational
Len – after former Burnley, Bury and as their namesakes.”
Swansea City football player Len Amy Kilpatrick, a regional fundraiser
Johnrose, who is living with MND for the Association, said: “I had the
privilege of meeting the MND Heroes
Rimmer – after former soldier Chris litter when they were just a few days old
Rimmer, who is living with MND and set and immediately became the envy of all
up the MND Warriors support group my colleagues.
Moss – after Emma Moss, who is living “This is a really unusual but perfect
with MND and writes the Mummy with way to honour Chris Johnson and others
MND blog who are living with this brutal disease
Primrose – after Primrose Hospice and a wonderful way to raise awareness
– imagine how many people will meet
Hawkins – after Good Morning Britain them, ask their names and so learn a
presenter and MND Association patron little about MND.
Charlotte Hawkins, whose father died “We are proud to welcome all
from MND. these future police dogs to the MND
Blue – one of the MND Association’s community and look forward to
colours watching their careers develop.”
www.mndassociation.org 21‘I became a trustee to hon
During Volunteers Week in
June we celebrated the work
of our amazing volunteers
who do so much to support
people living with MND across
England, Wales and Northern
Ireland. In this feature, we shine
a spotlight on the work of our
trustees, a group of volunteers
who use their unique skills and
experience to help drive the
Association’s work forward.
Dr Heather Smith
“My partner, Steve, was diagnosed with MND in 2009 and
died in 2012. Our experience shaped my desire to get more
involved with the Association and I began to volunteer with
the North Wiltshire Group, becoming the campaigns contact
and then also Vice Chair. I decided I wanted to get more
Dr Heather Smith
involved with supporting the direction of the Association
and applied to become a trustee in 2016. I am now Chair of
the Association’s Engagement Committee, which focuses on “In the year ahead I hope we are able to build on the amazing
processes to support staff, volunteering, and communications. energy of our fundraisers who have been so adaptable during
I am also a member of the Health Research Advisory Panel, this difficult year, finding new ways to raise money when the
which assesses applications for research funding. I recently more traditional options haven’t been possible. 2021 will be
became the Board Diversity Champion. a tough year financially for us all and we need to support
“I have volunteered, worked, and researched accessibility and our fundraisers and encourage more people to help us build
disability for many years, working mainly in the charity sector. I awareness of MND.”
have built relationships with many disability organisations and
stakeholders and have become the disability sector champion Jan Warren
for countryside and heritage, working with the Cabinet Office. I “I became a trustee to honour the bravery of my darling
hold various memberships including Associate Membership of husband David who died from MND just 131 days after being
the Chartered Institute of Personnel and Development and the diagnosed. MND tore through him and he faced it head on.
British Standards Institute. He decided we’d smile and make a memory every day as
“As a trustee, I bring my experience as a carer and the legacy the alternative was awful. I do still try but it’s so much harder
of the difficulties of working with health and social care without him.
professionals who had a low level of understanding of MND. “I’m a former finance director and I also worked with David
One of the reasons I decided to become more involved with in our own graphic design and typesetting company. I’m now
the Association was to share this and to build awareness of the Vice Chair of the Association and serve on the finance and
need for change so that support for carers improves. audit, engagement and governance committees, as well as
22 www.mndassociation.orgour my husband’s bravery’
Jan Warren Dr Nik Sharma
being a member of the Biomedical Research Advisory Panel He qualified at the University of Liverpool and completed
(BRAP) which reviews biomedical research grant applications. his general medical training at St James’s University Hospital
“I’m passionate about raising awareness of MND and seeing in Leeds and the National Hospital for Neurology and
the cure for this devastating disease found within my lifetime. Neurosurgery.
I enjoy asking questions on behalf of the membership and In 2007 he was awarded a PhD by the University of
taking part in fundraising. My accountancy background Cambridge for work done with Professor Jean-Claude
is helpful in several of the committees I’m fortunate to Baron. His thesis used motor imagery and functional
be involved with. I have also given many talks about the magnetic imaging (fMRI) to explore neuroplasticity and
Association’s work and my own personal journey. neurodegeneration in large-scale motor networks – funded by
“Every year we strive to fund the best research worldwide. Brain Entry Scholarship, UK Stroke Association & Raymond and
We are proud to be involved in caring for people living with Beverly Sackler fellowships.
and affected by MND, including children and young people. His research (thesharmalab.com) brings together these skills
In the year ahead I hope we will be able to do even more to to develop an innovative approach to better understand MND.
support them as well as searching for alternative therapies and More specifically he combines ‘system-level’ neuroscience with
new ways of living in this age of technology.” machine learning to develop therapeutics for MND. The group
has a specific focus on the gut microbiome and brain imaging.
Dr Nik Sharma
Dr Nikhil (Nik) Sharma is a Consultant Neurologist at the Meet our new trustees –
National Hospital for Neurology and Neurosurgery. turn to page 16
www.mndassociation.org 23You can also read
