Thanks to you our investment in MND research is growing - Full story - pages 6 and 7 A message from our CEO - page 3 - MND Association
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The magazine of the Motor Neurone Disease Association
Spring 2021
Thanks to you our
investment in MND
research is growing
Full story – pages 6 and 7
A message from our
CEO – page 3
Fo
or MND
GAZE
COMPATIBLE
2 www.mndassociation.org
, part of the family
5
MND Matters on the move
Introducing our new podcast,
welcome…
MND Matters. There has never been a more
6-7 important – or exciting time - for
£5.7 million cash boost for MND research.
MND research In the past ten years alone,
Association’s latest announcement
on the future of MND research. MND researchers have discovered
more about this devastating
10-11 disease than at any other point in
Making every mile count!
Catch up with our 7 in 7 the last century and we’re more
fundraisers. determined than ever to capitalise
15 on this extraordinary progress.
‘I’m so grateful for all the Thanks to the incredible support we have received this year from
support I have received’
Nilesh Topiwala shares his story of
the whole MND community, including Leeds Rhinos legend Kevin
being diagnosed with MND during Sinfield, who raised £2.2 million for the Association by taking part
lockdown. in seven marathons in seven days, we are able to do just that.
20-21 This year, the Association has announced it will be boosting its
‘Aim high, dream big’ investment in MND research by £5.7 million – pushing forward
Len Johnrose, who is living with
MND, on his busiest year yet. clinical trials, the discovery of new drugs and potential new
treatments.
30 With optimism surrounding MND research growing all the time
Northern Ireland Branch
marks big milestone this investment is crucial - and is a clear demonstration of the
Focus on 40 years of supporting Association’s intent to drive MND research forward.
people living with MND.
At the same time, we need the Government to get behind us
and increase the money it invests in targeted MND research.
Together with leading MND experts, people living with MND
and our partners at MND Scotland and the My Name’5 Doddie
Foundation, we’re calling on the Government to invest £50 million
Thumb Print is the quarterly magazine of the over the next five years to help researchers keep up this growing
Motor Neurone Disease (MND) Association,
Francis Crick House, 6 Summerhouse Road,
momentum.
Moulton Park, Northampton, NN3 6BJ As part of our campaign #UnitedToEndMND, we have launched
Reg. charity number 294354.
a petition, urging the Government to help us create a virtual
On the cover: ‘We’re investing more in
MND Research’ - full story pages 6 and 7. centre of excellence which will take us even closer to our vision of
our world free from MND.
Editorial and advertising enquiries:
Clare Brennan, Editor, 01604 250505 Please take a moment to sign the petition – you will find a link at
editor@mndassociation.org www.mndassociation.org/unitedtoendmnd.
If you have comments or feedback about In the meantime, you can read more about Kevin’s story and
the magazine and its content, please do not
hesitate to get in touch. news of our investment on pages 6 and 7.
The views expressed in Thumb Print are not necessarily those of the
Association. The advertisement of third party products or services does
We are so grateful for your continued support.
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 2020.
Thumb Print is available to read online and as a
downloadable pdf at
www.mndassociation.org/thumbprint
Sally
S ll Light
Li ht
Chief Executive
www.mndassociation.org 3
Flashback to 2019 when the Scrap 6 Months petition was handed into Downing Street
Association calls on Government
to end Scrap 6 Months delay
P
EOPLE living with MND are still Rudd, promised to review the process. focused on dealing with the coronavirus
waiting for the Government to Since then, the Department for Work pandemic, it is vital they do not ignore
approve vital changes to the and Pensions (DWP) has committed to the thousands of people with MND and
benefits system. reforming the six-month rule, but the other terminal illnesses who are dying
In 2018, the MND Association and changes need approval meaning that without the support they need.
Marie Curie launched a campaign called people living with MND are still waiting. “The Government must put an end to
Scrap 6 Months, which called on the the delay and urgently deliver on their
Government to make it easier for people “The Government must put an commitment to reform the six-month
living with terminal illnesses like MND to end to the delay and urgently rule and we hope they will remove the
access the benefits they need. deliver on their commitment requirement for terminally ill claimants to
to reform the six-month rule
At present, to access the Special be reassessed after three years. We need
and we hope they will remove
Rules for Terminal Illness fast-track a guarantee that this will not be pushed
the requirement for terminally
process, there needs to be ‘a reasonable ill claimants to be reassessed aside any longer and will be passed into
expectation of death’ within six months, after three years.” law in the next parliamentary session.”
something which is almost impossible to For more information about Scrap 6
predict in conditions like MND. The MND Association’s Head of Policy Months and how you can get involved
As a result of our campaign, the then and Campaigns, Susie Rabin said: “While visit www.mndassociation.org/
Work and Pensions Secretary, Amber it is understandable the Government is scrap6months
Spread a little sunshine by taking part in our summer raffle
Y
OU could win a top prize of enter online at www.raffleentry.org.uk/ please call us on our raffle line on 0330
£5,000 simply by taking part in mnda. Raffle entry closes on Friday 9 002 0342.
the Association’s summer raffle. July and the winner will be drawn a Regulations mean that you must be
Tickets costing £1 each are available week later. over 16 years of age to play. Entry is
now and you’ll find more details about As well as buying tickets yourself, you open to all UK residents excluding those
how to take part within your Thumb can also sell them to friends, colleagues in Northern Ireland, Guernsey and the
Print mailing. Alternatively, you can and neighbours. If you’d like more, Isle of Man.
4 www.mndassociation.org
Keep up to date with MND
Matters wherever you are
K
EEP up to date with the latest him to run seven gruelling marathons
news from the MND Association in seven days and led to £2.2 million
by downloading our new podcast, being raised to support people living
MND Matters. with MND and fund vital research. They
Launched earlier this month, the are joined by Jonathan Griffiths who
podcast offers a blend of interviews, is also living with MND. In the coming
chat, information and informal advice months, the podcast will explore a
and will help to raise awareness of MND range of subjects from communication
and the Association’s work. to relationships, family and care.
The Association’s Director of External
“As well as providing a new
Affairs, Chris James said: “We are excited
way for our community to
to be launching our MND Association
engage with our support and
podcast, MND Matters, which has been
information, it is an opportunity
developed by a team of staff working
for the wider community to
with people living with and affected Episode one, which is available now,
hear the stories of people
by MND. As well as providing a new features the Director of Rugby at Leeds
affected by MND first-hand.”
way for our community to engage with Rhinos, Kevin Sinfield, in conversation
our support and information, it is an with hosts Stephanie Steward and Nick MND Matters is available to download
opportunity for the wider community Cole about his friendship with Rob from your usual podcast platform. You
to hear the stories of people affected by Burrow, who is living with MND. He talks can also visit www.mndassociation.org/
MND first-hand.” about how their friendship inspired podcast for more information.
Date is set for Association’s global research Symposium
Last year’s Symposium was broadcast from a Covid-secure studio at the Association’s offices in Northampton.
T
HE world’s leading experts in been taken to hold this important event taking part praising it as a ‘landmark
MND research will come together online from 8-10 December 2021. achievement’.
online for the Association’s 32nd Last year’s Symposium was broadcast In the coming months, the
International Symposium on ALS/MND to the world from a Covid-secure programme will be developed and
which is being held in December. studio at the Association’s offices in details about how to register will be
Following on from the success of the Northampton and attracted 1,800 made available.
Association’s first virtual Symposium last delegates from 48 countries. To keep up to date with the latest
year, and ongoing challenges caused by The success of the event created a real news head to www.mndassociation.org/
the global pandemic, the decision has buzz on social media with many of those symposium.
www.mndassociation.org 5
MND research to re of funding, thanks 6 www.mndassociation.org
ceive £5.7 million
to Kevin – and you
Kevin’s 7 in 7 Challenge last December raised £2.2 million treatments for MND. This extra funding for MND research
and since then Kevin, Rob and the Association have been is a demonstration of our commitment as an Association
discussing the best way to spend the money to benefit people to see that happen. And, of course, our work lobbying the
with and affected by MND. Government to follow our lead and invest in targeted MND
research will continue.
With that in mind, we are excited to announce that money “In the meantime, thanks to the efforts of Kevin and our
raised from Kevin’s fundraising pot will be channelled into six many thousands of supporters, we will carry on providing the
areas of the Association’s work: support people with and affected by MND need now.”
You can listen to Kevin talking about his work with the
• Further developing our services for children and young
Association on the first episode of our new podcast – MND
people
Matters.
• Our care centre and network programme Find out more on the website www.mndassociation.org/
podcast
• The Association’s MND Connect helpline
For the latest MND research news turn to pages 8 and 9.
• Our regional team in the north
Read more stories from our 7 in 7 fundraisers – pages 10
• Helping more care centres and networks get involved in and 11.
clinical trials
Wheelchaircars.co.uk
• Translational research – researching potential
treatments for MND from drug discovery and
development through to clinical trials
The work will span around three years with 40% of the funds
being spent on new projects to further benefit people with
MND.
MND Association Chief Executive Sally Light said: “Kevin
was impressed by the breadth of the work we undertake and
was particularly keen to support those services which have
benefited Rob and his family – having seen first-hand the
positive impact of those. This money will make a real difference
not only now but into the future as we use it to explore new
ways of providing support.”
Around a quarter of the money raised by Kevin’s 7 in 7
Challenge will be targeted towards research.
This extra funding for MND research is a
demonstration of our commitment as an FREE NO
Association to see that happen. And, of course, our
OBLIGATION HOME
work lobbying the Government to follow our lead
and invest in targeted MND research will continue. DEMONSTRATIONS
USED VEHICLES
As a result of the heightened awareness created by Kevin FROM £2995
and Rob leading to more fundraising activity, and our
community’s incredible response during the pandemic, the
Association has announced it will commit an extra £2 million Tel: 0161 793 5934
to MND research on top of that – and that’s in addition to the Full details on our website,
£3 million already committed this year.
Sally added: “We, as a community, are impatient to find
www.wheelchaircars.co.uk
www.mndassociation.org 7
Putting clinical tria
The race to find a vaccine for coronavirus has put
clinical trials very firmly in the spotlight – What are they?
How long do they take? Is there anything the research
community can learn to help us develop treatments for
MND more quickly? Here, we explain more about the
process and what it means for people living with MND.
B
EFORE any new medicine can be have been successfully completed –
used to treat people in the UK, it and it is important to remember that a
goes through a strictly monitored, clinical trial can be stopped at any point
development process. - the organisation must then present the
This involves researching the medicine data from the trials to the appropriate
in the lab and testing it in clinical trials regulatory authorities.
which can take many years. After passing Within these agencies, a team of
all stages of the clinical trial, a licence doctors, statisticians, chemists and other
must be granted before a treatment can scientists review the company’s data to
be made available for wider use. establish whether the drug overcomes
Licences are only granted if strict the three hurdles for safety, quality of
safety and quality standards are met. manufacture and efficacy, and whether
In the UK, licences are granted by the the benefits of taking it outweigh the
Medicines and Healthcare products risks. If they approve the drug, they also
Regulatory Agency (MHRA), and in decide whether it should be available
Europe by the European Medicines over the counter at a pharmacy or only
Agency (EMA). In the USA, approval on prescription. It is at this stage that
is given by the Food and Drug the manufacturer will decide what price
Administration (FDA). Licences confirm they will set for a new drug on release in
the illness, symptoms or disease the a new country.
medicine should be used for and the
recommended dosage NHS appraisal
Once a new medicine has been licensed
From discovery to approval in the UK, it needs to be appraised by
Pharmaceutical companies and research the bodies that decide whether it is a
institutes develop or screen molecules cost-effective treatment to provide on
to find those that might have a positive the NHS. The NHS is legally obliged to
effect on a disease. These are then tested fund medicines recommended by these
in the lab. The organisation must then bodies, usually within 90 days of receipt
apply to the regulatory authority for the of the recommendation.
country or countries where the trial will The bodies that appraise new drugs
take place for permission to conduct are:
clinical trials on people. • England – National Institute for Health
If the research request is approved, the and Care Excellence (NICE)
drug will enter the first of three phases • Wales – NICE/All Wales Medicines
of clinical trials to test whether it is safe Strategy Group (AWMSG)
and whether it works. Trial drugs are • Scotland – Scottish Medicines
usually tested against another treatment Consortium (SMC)
– this will either be a placebo (a dummy • Northern Ireland – Department of
drug) or another treatment that is Health (DoH)
already in use. NICE considers many cost-related
After the three phases of a clinical trial factors when deciding which drugs to
8 www.mndassociation.org
ls in the spotlight
approve for use by the NHS but has with minimum risk. They found ways
made significant changes in recent to incorporate remote monitoring and
years to allow for certain drugs to be alternative methods of assessment.
granted special treatment. This means This appears to be working well and
that very expensive drugs which many have said that they will continue
are used to treat ‘very rare diseases’ with these new ways of working going
(diseases that affect fewer than 1 in forward.
50,000 people), are made available The speed at which vaccines have
freely through the NHS. However, NICE been approved has raised some
has adopted a strategy of attaching questions about the length of time it
restrictions to the use of these takes for other drugs to be approved.
medicines through the NHS, meaning The MHRA used a ‘rolling review’
that people in England may struggle to process – a regulatory tool that is
receive an expensive drug even after used to speed up the assessment of a
NICE has approved it. NHS doctors must promising medicine or vaccine during a
be able to justify that a patient meets public health emergency. This enables
all the necessary criteria to receive the regulators to see clinical trial data in real
drug. time so new drugs can be assessed in
In Scotland, the SMC issues guidance the shortest time possible. The review
on treatments for use by the NHS, and will continue as data from ongoing
in Northern Ireland, NICE guidance is studies becomes available.
generally accepted once is has been
checked by the DoH for any policy and What does all of this mean for the
financial consequences. development of treatments for
MND?
Monitoring approved drugs Although there are several clinical trials
Once a drug has been approved and with participating centres in the UK,
made available, it will continue to and many researchers carrying out
be carefully monitored over the first promising preclinical studies, we are still
few years of use to ensure it is as safe a long way from any new therapies for
as possible. In rare cases, medicines MND being put forward for marketing
may be withdrawn if there are serious approval in this country.
safety concerns or the risks of using the Five trials are in Phase 3, although
medicine outweigh the benefits. This some of these drugs (such as IL-2)
continued assessment is often known are licensed to treat other diseases.
as Phase 4 in the clinical trial process. Many of these trials also have active
sites in other countries and marketing
The coronavirus response authorisation may be sought there
The pandemic firmly placed the clinical before an application is made in the UK.
trial and drug approval process in The drug discovery, trial and approval
the public eye, sparking discussion process can take more than ten years.
about how the collaboration, short It is long and expensive with very
development and approval time seen few investigational compounds even
for vaccines could be replicated for making it out of the lab.
other drugs. It is encouraging though, that despite
Prior to the pandemic, clinical trials this, there are many pharmaceutical
were already beginning to move away companies and research institutions
from their traditional format to become which are continuing to look for new
more inclusive and more efficient. In treatments, and ultimately, a cure for
the midst of the pandemic, clinical MND.
trial centres had to quickly adapt their We can look forward to the future
protocols so that trials could continue with hope.
www.mndassociation.org 9
W
HEN Kevin Sinfield completed
seven marathons in seven
days after being inspired by
his friend and former teammate Rob
Fundraisers ta
Burrow, not only did he raise a huge sum
of money himself, he also inspired an
army of others to do the same.
So far, 468 people have signed up to
complete their own 7 in 7 challenges,
own 7 in 7 Cha
raising an incredible £213,647.
Kevin said: “I’ve been absolutely blown
away by the number of people who’ve
decided to take on their own 7 in 7
challenges to raise money for the MND
Association.
“When I was completing my own
challenge, I never imagined it would
inspire so many others to get out
running, walking and cycling to raise
money themselves. It’s been humbling
to hear the stories of people getting
involved; from members of the rugby
league community who want to show
their support for Rob, to families affected
by MND, to those who’ve just heard
our story and been inspired to get their
running shoes on. MND isn’t uncurable,
it’s underfunded. That’s why we need
more people to take on the challenge to
help us get closer to finding a cure.”
Leeds Rhinos fan Isaac captured
the hearts of both the rugby league
community and fellow 7 in 7 challengers.
His parents posted daily videos on
Clockwise from top left:
social media documenting the eight- Fiona Brice and her son
year-old’s challenge which saw him run Robert, Graham Berry,
Hannah Campbell,
a mile every day for seven weeks, even Nathalie Dawson, Isaac
with his parents
on Christmas Day.
A number of players shared messages
of support for Isaac, including Kevin
himself who said he was ‘chuffed to bits’
for the young fundraiser as he reached do 7 in 7 especially after seeing Kevin Rob has brought us together, and the
the end of his gruelling challenge. Sinfield do his marathons, he became way that Kevin Sinfield has inspired and
Isaac completed his 49 miles by my inspiration and I wanted to raise as motivated not just me but many like me,
running from the Rob Burrow mural much money as he did.” is the rugby league family at its very best.”
in Leeds City Centre to Headingley Although Ava-Jane didn’t quite make While many were inspired by Rob and
Stadium, saving enough energy to do a the £2.6 million raised by Kevin, she did Kevin’s story, many of those who joined
lap of the pitch with club mascot Ronnie raise a whopping £1,080. the challenge had also been affected
the Rhino. Supporters from across the rugby by MND themselves. Fiona Brice, who
Other young rugby fans were inspired league community have joined the took part with her 13-year-old son
to take part too, including eight-year-old challenge. Lifelong Wigan Warriors fan Robert, lost her dad to MND in 2018.
Ava-Jane who ran a mile every day for Graham Berry said: “I don’t think there She said: “I’d been wanting to fundraise
seven days. Ava-Jane said: “I wanted to are any followers of our great sport that for the Association for a long time but
raise money for Rob Burrow and other haven’t been moved by Rob’s story. hadn’t found the right challenge. Seeing
people living with MND to help them Teams don’t matter in rugby league. It someone who was still mentally and
have a better quality of life - especially doesn’t matter that Rob played for Leeds physically fit - even in his 80s - deteriorate
those with small children. I decided to Rhinos, he’s one of ours. The way that so rapidly and seeing the impact that
10 www.mndassociation.orgke on their 2020. With me working from home
and the lovely weather, it was a perfect
opportunity for Mum to train me up!”
Hannah and her mum ran 7 km each
llenge day. She also encouraged family and
friends to complete their own 7 in 7
challenges.
She said: “On the dark and cold nights
when I didn’t want to go out, getting
sent a selfie from a friend or family
member completing their challenge
lifted my spirits and encouraged me
to keep going.” Hannah received 144
donations and raised an incredible
£3,888.
After cycling more than 1,000 miles
during the first lockdown, Nathalie
Dawson decided to get on the
road again as part of her own 7 in 7
Challenge.
Nathalie’s dad Bob was diagnosed
with MND in 2018 and died in June
2020, shortly after Nathalie completed
her challenge.
As a former rugby player, spurred on
by the success of Kevin Sinfield’s 7 in
7 Challenge, Nathalie decided to get
involved, running, walking and cycling
to cover the miles.
She said: “I realised after losing my dad
to MND in July that I needed something
positive to kickstart 2021.
“I joined the amazing 7 in7 for Team
MND Facebook group for inspiration
and support. I could see lots of people
walking and running but I also love
cycling. I couldn’t decide what to do so I
decided to do all three!”
“I got my bike serviced by my friend
Ava-Jane
and he suggested that members of
his Cycle Stars Race Club might like to
had on Mum, was devastating”. up for 7 in 7. The challenge helped him get involved. Lots of them took up the
While Fiona ran seven miles each day hit 1,000 running miles over the year. challenge and donated to my JustGiving
to cover her miles, Robert chose to cycle. Hannah Campbell’s dad died of page.
Together they raised £756. MND 22 years ago, when she was just “From then on I booked slots with
Chris Frost took part after his father- 16 months old. Since then, her mum friends who wanted to join me. I was
in-law died in April last year, just four Pauline has taken part in a number of fully booked! Each time I went out I
months after being diagnosed with MND. fundraising challenges and raised more would wear my MND Association vest
He said: “Les was an incredible man. He than £100,000. and snood, while my buddy would
was the life and soul of the party, nothing “I always saw my mum as an pop one on top of their clothes too.
was too much to ask of him.” inspiration and wanted to one day I’m always proud to represent the
As a keen runner Chris decided to follow in her footsteps by completing Association.”
use his hobby to raise funds for the my own challenge for MND. When I If you’ve been inspired by these
Association. When injury forced him saw the 7 in 7 Challenge I knew it was incredible fundraisers, it’s not too
to postpone taking part in an ultra- a perfect opportunity for me to get late to join the team and complete
marathon, he set himself the challenge of involved. I only took up running at the your own 7 in 7 challenge. Visit www.
covering shorter distances and so signed start of the first lockdown back in March mndassociation.org/7in7 to sign up.
www.mndassociation.org 11Candidates asked to sign Ymgeisydd wedi’i gofyn i
up to Welsh Manifesto cefnogi Maniffesto Cymru
C M
ANDIDATES for Welsh Senedd Election have been asked AE ymgeisydd Etholiad Seneddol Cymru wedi’i gofyn i
to help improve the lives of people living with MND. helpu gwella bywydau pobol sydd yn byw gydag MND
As part of its campaign activity in the run-up to the Fel rhan o gweithgareddau ymgyrch tuag at yr
elections in May, the Association is urging political parties and Etholiad ym mis Mai, mae’r Cymdeithas yn annog pleidiau
their candidates to sign up to its Welsh Manifesto. gwleidyddol a’i ymgeisydd i cefnogi’r Maniffesto
The manifesto calls for: Mae’r Maniffesto yn galw am:
• The implementation of the current Neurological • Rhoi’r Cynllun Cyflawni Niwrolegol presennol
Conditions Delivery Plan – a long-term strategic ar waith – ymagwedd strategol hirdymor i godi
approach to raising standards in treatment, services safonau triniaeth, gwasanaethau a chymorth ar
and support for people with living with MND gyfer pobl sydd yn by
• Improvements in NHS Continuing Healthcare (CHC) • Gwelliannau yng Ngofal Iechyd Parhaus (GIP)
• The delivery of safe and accessible homes for people • Cyflawni cartrefi diogel a hygyrch i bobl ag MND
living with MND
• Cymorth i ofalwyr di-dal pobl sydd yn byw gydag
• Support for unpaid carers. MND.
Sian Guest, the MND Association’s Policy and Public Affairs Dywedodd Sian Guest, Rheolwr Materion Cyhoeddus Pholisi
Manager – Wales said: “We believe all political parties and Cymdeithas MND-Cymru: Credwn y dylai pob plaid wlediyddol
candidates should commit to our ‘asks’ to help improve the ac ymgeisydd ymrwymo i’n gofynion i wella bywydau pobl sydd
lives of people living with MND, their families and carers.” yn byw gydag MND, eu teuluoedd a’u gofalwyr yng Nghymru”
To read the full manifesto, visit www.mndassociation.org/ Darllenwch y Manifesto llawn yma www.mndassociation.
healthcarepolicies org/healthcarepolicies
If you live in Wales, you can email your Senedd candidates Os ydych yn byw yng Nghymru, allwch anfon ebost I’ch
and ask them to support the manifesto by visiting ymgeysydd Seneddol i gofyn iddynt cefnogi’r manifesto gan
www.mndassociation.org/waleselection ymweld www.mndassociation.org/waleselection
12 www.mndassociation.org‘Association’s research
investment is welcome news’
T
HE Association is delighted to announce it will be
investing an additional £5.7 million in MND research
this year, thanks to the extraordinary efforts of all our
fundraisers, donors and supporters.
As our understanding of MND continues to grow, so too
must our investment and I know this will be very welcome
news for so many of you who live with the devastating effects
of MND each and every day.
This investment simply wouldn’t have been possible
without the support of our community which has done so
much to support our work throughout 2020 and I would
like to pass on my thanks to all of you for everything you
continue to do.
Elsewhere, the Association’s AGM will once again take place
online on 1 July.
During the meeting, we will hear more about the
Association’s work during 2020 as well as our response to the
coronavirus crisis.
We will be launching the Association’s new membership
strategy and outlining how members can get more closely
involved in the Association’s work, including helping to
develop content for Thumb Print.
While nominations for the trustee elections have now
closed, voting will soon get underway and you will find all
the details you need about how to take part on page 14.
I do hope you will be able to join me.
Richard Coleman, Chair of the Board of Trustees
Car giant selects Association for three-year partnership
OYOTA is joining forces with the MND Association to help selected as the new charity partner of Toyota. We are confident
T raise money and awareness of MND.
As part of the three-year partnership which started on 1
April, Toyota (GB) and Toyota Financial Services will take part in
that our combined focus and efforts over the next three years
will have a positive impact on the quality of life for those living
with and affected by MND and we very much look forward to
a range of activities including sponsored walks, auctions and a working with Toyota’s staff.”
Director’s Challenge. Agustín Martín, President and Managing Director, Toyota
“We are confident that our combined focus (GB), said: “As a company focused on achieving ever better
and efforts over the next three years will have mobility for all, we were very impressed with the MND
a positive impact on the quality of life for those Association’s strong focus on improving mobility through
living with and affected by MND and we very wheelchair adaption, to enable independence for those living
much look forward to working with Toyota’s staff.” with the disease. The MND Association was the smallest of
The MND Association was selected to be Toyota’s national the charities considered for our national charity partnership,
charity partner through a staff-driven selection process in which so we hope our fundraising over the next three years will
all employees were given the opportunity to nominate a charity give a significant boost to the support it can offer to people
and then vote for their preferred good cause from a shortlist. living with the disease and to invest in research that will
The Association’s Director of Fundraising, Linda Allen, said: increase understanding of the disease, develop treatments and
“‘Everyone here is so excited that the Association has been ultimately a cure.”
www.mndassociation.org 13Your invitation to the
Association’s AGM 2021
F
OLLOWING the success of last year’s Annual General
Meeting (AGM) held online in October, an Extraordinary
General Meeting (EGM) was held in March during which
members voted to change the articles of Association to allow
future AGMs to be held online when necessary.
With the continued safety and wellbeing of our members
and staff in mind, the Board of Trustees has taken the decision
to hold this year’s AGM as an online event on 1 July.
In addition to a presentation of the Association’s 2020
financial performance and a celebration of the amazing work
our MND community does to support people living with and
affected by MND, the AGM will give our members the chance
to meet the Association’s newly-elected trustees who will be
formally appointed to the Board.
Chairman of the Board of Trustees, Richard Coleman, will also
introduce his successor, the Chair-Elect who will take up office
in 2022.
The Association’s new membership strategy will also be
launched, giving members the opportunity to become much
more closely involved in the Association’s work as we push
ever closer to our vision of a world free from MND.
The more formal business of the AGM will be followed by
our keynote speaker, Professor Chris McDermott, Professor of
Translational Neurology at SITraN and a Consultant Neurologist
at the Sheffield Teaching Hospitals Foundation NHS Trust.
During his speech, Professor McDermott will explain more
about the clinical trials taking place in Sheffield, developments
in microbiome projects and plans for the future.
We will be contacting all members during June with details
on how they can register to attend this year’s AGM.
Sign up now to get your AGM Voting Pack
by email and help us save money
Producing and distributing election packs is a costly process, diverting vital
resources away from our work for people with MND.
As in previous years, we are asking members who are able to provide their
email addresses to the Association in order to receive all the information they
need about voting at the AGM by email.
Your email address will only be used for this purpose and any future
membership communications and will help us save money. You can change
or stop these communications at any time. If you have already provided your
email address you don’t need to do anything, but if you would like to sign up
for your membership information to be sent by email in future, please go to
www.mndassociation/agmnopost
Professor Chris McDermott will be the keynote speaker at this year’s online AGM
14 www.mndassociation.org‘So grateful for support after being
diagnosed with MND in lockdown’
W
HEN Nilesh Topiwala was diagnosed with MND
during lockdown last year he never could have
imagined just how much support he would receive
from friends, family and colleagues around the world.
So far, Nilesh has raised £28,253 for the Association thanks
to the incredible support of those closest to him including his
colleagues at Next in Leicester where he continues to work as
a senior fabric technologist, suppliers from across the globe,
friends in the UK and abroad and family members in India.
Nilesh said: “I am overwhelmed by the support I have
received; it really has been wonderful. I never would have
expected it.
“My managers and colleagues at Next have been amazing.
When I told my manager, she was shocked, but they have
done everything they can to help me carry on working. I
have every intention of working until I physically can’t as my
job means everything to me. I’ve been working in fashion all
my life.”
Over Christmas, his colleagues took part in a number of
fundraising events including raffles, a cute pet competition,
Christmas Olympics and many more.
A spokesperson for Next said: “Nilesh is a highly-respected,
valued and popular member of our team.
“His diagnosis was a shock to us all and initially we felt quite
helpless. However, Nilesh’s positivity under such challenging
circumstances was, and still is, truly inspiring. The Christmas
charity fundraisers gave us a much-needed, positive focus and
a way to show our support for Nilesh.”
“My managers and colleagues at Next have
been amazing. When I told my manager, she was Nilesh Topiwala pictured with his family
shocked, but they have done everything they After a series of tests – and losing around 10 kilos in weight
can to help me carry on working.” – he was diagnosed with MND.
Nilesh was diagnosed with MND during the second He said: “It was a huge shock. My symptoms are bulbar, and I
lockdown in October, having experienced problems with his have been given a life expectancy of three years.
speech since the start of 2020. “There are times when I don’t give it a second thought and
I carry on my life as normal, then there are others where I
struggle to speak. It is affecting my fine motor skills – it can
take me ten minutes just to button up my shirt.
“I had a PEG fitted in January. For the first few weeks it was
very uncomfortable, but it is fine now.”
Nilesh is being supported by his wife and two daughters,
both of whom are training to be doctors.
He said: “My wife has been a rock and has been amazing in
looking after me. She makes sure I get the nutrition I need by
cooking fresh meals every day and helping me to exercise.
“The team at my local hospice is also very good. I have
a respiratory nurse, dietician and a speech and language
therapist who help me. I am being looked after very well and I
am very grateful.”
Nilesh’s colleagues from Next took part in a number of events to help raise money for the
For more information about Nilesh’s fundraising, or to
Association donate, visit www.justgiving.com/fundraising/nilesh-topiwala
www.mndassociation.org 15‘How we turned fundra
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Ali the Alligator
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16 www.mndassociation.orgising into a game!’
“H
I, my name is Zak and I am 11.
art
“Last weekend my siblings and I took part
in the GameOver MND event. We spent 188
hours over Saturday and Sunday raising funds.
“A lot of people have asked why we did it. We did
it because a year ago our Grandad was diagnosed
with MND and we’ve quickly realised how horrible
it is. Grandad was told he had two years left with uss
and we are one year into that.
“We feel helpless but this was something we
could do. My brothers and sister all joined in. We
raised £75 and had lots of fun! We plan on raising
some more money soon. My dad wants to take
10,000 steps every day in May when the weather
gets warmer. Here are some pictures from over
the weekend!”
www.mndassociation.org 17Fundraisers unite to say
G
AMING fans of all ages came
together in February to take
part in the Association’s first
ever #GameOverMND fundraising event.
More than 50 avid gamers came
together on February 6 and 7 to take
part in the gaming marathon in return
for sponsorship, with many sharing
livestreams to encourage others to get
involved and donate.
Ten-year-old Riley took part and
raised £380 in memory of his grandad,
who died before he was born. Riley’s
mum Charlotte said: “I have a picture of
my dad in the living room window and
I’ve always told my children who that is.
My dad’s mum also died of MND and I
never had the chance to meet her. So,
to do something that raises money for
the Association is just amazing.”
Stewart joined the challenge with
his wife and friend. Together they
completed an eight-hour Minecraft Riilley
Ril
Ri leeyy Pow
owel
elllll
building challenge, constructing a
castle using materials to work through
immersing yourself in a good game to complete a fundraiser for the MND
different ages, including stone, iron
for me is like others diving into a good Association for some time, but never
and diamond. Stewart decided to
book.” really knew what to do. So, when a
fundraise when his aunt was diagnosed
The #GameOverMND weekend also gaming tournament came up, it was the
with MND. He explained: “When Mum
saw the Association’s first ever FIFA perfect opportunity.”
mentioned how much the Association
tournament.. Jack spent most of the day playing
had already done for my aunt, it made
A total of 34 players signed up playing matches with other competitors, before
my mind up that I wanted to help repay
a series of knock out games in a bid to finally claiming victory.
the care shown to her in the form of
be crowned champion. He said: “I was so happy when I won
fundraising.
Jack, 13, whose dad is living with the tournament. When I signed up, I
“Gaming has always been a way
MND, won the Xbox championship. wasn’t sure I would get through the first
of just getting away from real life –
His mum Lynsey said: “Jack has wanted round, so to win was amazing!”
18 www.mndassociation.org#Gameover MND!
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Many of our gamers commented on competitor’s thoughts. He said: “It’s a cure for this awful disease. I don’t want
how gaming, and setting themselves difficult not being able to meet with anybody to go through the same thing
a challenge, gave them something to friends but playing games and talking to my uncle did.”
focus on during lockdown. them while playing really does keep me So far this year our #GameOverMND
PlayStation FIFA champion Luca said: occupied.” fundraisers have raised more than
“Lockdown has been hard on us all Alfie heard about the challenge having £9,000. You can take part at any time
mentally. Having this tournament was lost his uncle to MND. He said: “My uncle during the year, either by hosting a
good fun and helped occupy the mind, developed MND in 2017 and it was so gaming marathon or any type of gaming
making a change to the repetitiveness of quick and violent. It was devastating challenge. Register by visiting
lockdown as well as having fun with the for us all and left a massive hole in our www.mndassociation.org/game and
community for a good cause.” lives. I hope the money raised will make we’ll send over a free MND Association
FIFA finalist Alfie echoed his fellow a difference by funding research to find T-shirt to wear while you game.
www.mndassociation.org 19‘I needed to talk about my life with
I
T might have been a while since Len
Johnrose was a pupil at his local school,
but their motto ‘aim high, dream big’
continues to be a big part of his life to
this day.
While the rest of the country ground to
a halt for much of 2020, former footballer
Len has had one of his busiest years
yet – his autobiography, Finding a Way,
was published in September and he has
also launched Project 92, an exciting and
innovative project which will see Len
join up with all 92 teams in the English
Football League to help raise money and
awareness of MND.
And, despite having to
cancel it three times due to
Covid restrictions, Len, who
was diagnosed with MND in
2017, has also been working
on a Masquerade Ball, due
to be held in September,
which will see big names
from the world of football,
entertainment and MND
research come together for
one night only.
Len explained: “For the
majority of my life, I’ve been
involved in football in some capacity.
“There was always a story to tell and,
Len, pictured in 2019 with the Chief Executive of the Professional Footballers’ Association, Gordon Taylor OBE
over the years, I have been regularly
asked to write a book encapsulating so writing Finding a Way allowed me to Professional Footballers’ Association
all things football. For the most part, say whatever I wanted without being (PFA) to help fund adaptations, which
I actually found football quite boring hushed by the family!” otherwise would have meant me having
so there was no way I wanted to inflict Len has never shied away from talking to live as a virtual prisoner, with no way
those thoughts on anyone! openly about his diagnosis and the of getting into the garden.
“Being diagnosed with MND though, impact MND continues to have, not just
“I immediately knew that I
well that was very different. I immediately on him but also his wife Nadine and their
wanted to do something that
knew that I wanted to do something family. would perhaps help others who
that would perhaps help others who In November, Len and Nadine took had suffered the same fate. I
had suffered the same fate. I became part in a Zoom call to raise awareness became genuinely interested
genuinely interested and intrigued by among MPs and Peers about the and intrigued by MND, the way
MND, the way it affected me, and to a problems they, and many other people it affected me, and to a greater
greater extent, the impact that it had who are affected by MND, face when it extent, the impact it had on
on others that came into contact with comes to adapting their home. The issue others who came into contact
it. There is little as fascinating as being is being highlighted by the Association’s with it.”
around people so clearly out of their campaign Act to Adapt. “The PFA has funded a powered door,
comfort zone. I wanted, no, needed to talk He said: “I explained how certain things an external lift and a wetroom, but there
about it. And that is pretty much where that weren’t available for me would be are so many who not only don’t have the
the re-emergence of the idea of a book funded if I lived half a mile further up the means, but don’t have the time needed
came from. hill. for the application process.”
“Anyone who knows me, knows how “I also explained that I was in the Len may have made his last
much I love the sound of my own voice, fortunate position to call on the professional appearance for Burnley FC in
20 www.mndassociation.orgMND and help others’ Where will your
Ultra Challenge
feet into freezing cold water for 92 take you next?
seconds – just like footballers do – to
W
ITH 14 events to choose
raise money for the MND Association.
from across the UK, the
“I have enticed names such as
first challenge our Ultra
Charlotte Hawkins, Jeremy Vine and
Challenge participants face is selecting
numerous others, into taking on the
the right trek for them.
challenge. We’ve also managed to
While some are drawn to the
involve PFA Chief Executive, Gordon
dramatic Dorset coastline for the
Taylor, who is engaging with all 92 league
Jurassic Coast Challenge, others
clubs, hoping to get their support.
pine for the picturesque villages of
“Another supporter is the Leeds
Gloucestershire and can’t resist the
Rhinos, who are doing so much to help
Cotswold Way. Those looking for
their former player Rob Burrow. There’s
a slightly flatter route can join the
even a chance that designer Lawrence
Thames Pathway Challenge which
Llewellyn–Bowen will be dipping his feet
takes walkers from the capital to
in the water.”
Henley-on-Thames.
Footballers including Stephen Darby,
One Ultra Challenge just isn’t
who is living with MND, former England
enough for some of our dedicated
captain Stuart Pearce and Manchester
#TeamMND supporters.
United legends Alex Stepney and Frank
Paula Solomon has six challenges
Stapleton will also take part in Len’s
under her belt, including the Cotswold
fundraising Masquerade Ball which
Way, London 2 Brighton Challenge
will take place at the Winter Gardens in
and the Thames Path Challenge. This
Blackpool on 11 September.
year she’s planning to tackle the Peak
He said: “I have to give a shout out to
District Challenge in July, in memory
the committee who have put in so much
of her husband Dave who had MND.
energy, thought and sheer will, to come
She said: “When Dave was
up with this remarkable event.
diagnosed with MND we contacted
“The guest list is incredible; we
the MND Connect helpline which
already have Coronation Street’s Daniel
offered emotional support and help
Brocklebank, Wallace and Gromit creator
with finances. We also had a grant
Nick Park, MND expert Professor Dame
to help with the costs of a wetroom
2004 but the football community is never Pamela Shaw and the North West’s
which was a huge help. I know first-
far from his mind. Sports Broadcaster of the Year, Andy
hand how the money raised from
After publicly talking about his Bayes from BBC Radio Lancashire. There
these events makes a difference.”
diagnosis for the first time in 2018, Len will also be a contingent from Bury FC’s
Ultra Challenge events are open
described the outpouring of love and double promotion winners from the
to participants with varying abilities.
support from players and fans all over mid-90s along with entertainment from,
Most offer 25, 50 and 100km routes
the country as ‘overwhelming’. among others, The Commitments and X
to choose from and participants
That love and support continues to Factor winner Matt Cardle.
can run, walk or jog the distance. In
this day with the launch of Project 92, “Everyone will be in need of a great,
addition to spectacular views and
which has seen Len raise awareness of fun-filled night by the time September
camaraderie, participants benefit
MND among footballers right across comes, and we really want to give people
from plenty of well-equipped rest
England. an experience to remember.
stops with refreshments and recovery
With visits to football grounds put “As we use to say at my old school, ‘aim
spaces offering a boost to the finish
on hold because of coronavirus, Len high – dream big.’”
line where a celebration BBQ and glass
recorded a film which premiered on Sky For more information about
of fizz await.
Sports Soccer Saturday in September. Project 92 and Icefoot 92 visit www.
Sign up to join an Ultra Challenge
Len explained: “Covid did have mndassociation.org/icefoot. For tickets
with #TeamMND for as little as £5
an impact on this, which was a tad to Len’s Masquerade Ball visit www.
registration fee and £245 minimum
frustrating but also meant I had time to wintergardensblackpool.co.uk/whats-on/
fundraising pledge.
think. And then, out of nowhere came masquerade-ball
Visit www.mndassociation.org/ultra
the idea of the IceFoot 92 Challenge. Len’s book Finding a Way is available
for more information.
“We’ll be asking people to put their now from Amazon.
www.mndassociation.org 21‘Being a trustee helps me to
With the Association’s AGM and trustee election taking place this summer, we
meet four more of our trustees who explain more about their role and how they
became involved with the Association’s work.
Vicky Paeschel Andy Cawdell
Catherine Knights Shaun McGee
Vicky Paeschel was 18 then. As part of the Board now, I can bring in a young
“I lost my mum to MND in 2008 – she was only 39 then and left carer’s perspective and experience. I am also passionate about
behind six incredibly loved children. Coping with this heart- ensuring that volunteers, like myself, always feel valued and
breaking loss has been incredibly difficult but I have been their efforts are recognised by the Association. I am an advocate
determined to keep her memory alive. for collaborative working and networking and have a lot of
“In 2017, I started fundraising and volunteering for the MND experience as a fundraiser.
Association, hoping to make a difference to others affected “The past year has been tough, but as a community we have
by this devastating disease. Having volunteered with my local all pulled together to continue our support for people living
branch, I was invited to join the MND Association’s Engagement with MND, their families and carers. I would like to take the
Committee in September 2017 as a co-opted member to opportunity to thank our volunteers, members, supporters, and
bring people together, link up fundraisers, local branches, and fundraisers for all their efforts in these uncertain times.”
groups across the country. It was the experience of using my
views, ideas and experience to support the Association, that Andy Cawdell
made me want to become a trustee. It was yet another way to “I became a trustee because, as a management consultant in
give something back to a cause that I truly care about and that the not-for-profit sector, I have always had up to three voluntary
means a lot to me. roles at any one time to put back into the sector that pays my
“When Mum’s health started deteriorating, I became her fees something that helps it and helps me understand what
main carer while also helping to raise my younger siblings – I is going on from a different perspective. I was also pointed
22 www.mndassociation.orgkeep Mum’s memory alive’
towards the MND Association because of my diagnosis “I currently sit on the Care Committee which makes use of
of MND. my specific skills but have also been involved in other projects
“I have been a trustee for just over a year and have slowly including reviewing the current strategy for the Association.
taken subsidiary roles as a member of the Finance and Audit “The past year has been extremely challenging for everyone
committee, the Governance committee and the Biomedical but I am immensely proud of the way the Association and
Research Advisory Panel. its volunteers and staff responded to the pandemic, rapidly
“I understand charity organisation leadership, governance, embracing new ways of working in order to continue to
finance and fundraising and have tried to help in various support everyone affected by MND.
aspects under these headings. As a person living through MND “My hope for 2021 is for a gradual return to some form of
I also bring this dimension to my participation, for example normality while retaining the changes that have benefitted
being a fervent supporter of the new work that is being people affected by MND. I hope the Association will continue
undertaken with those who are living with MND with young to go from strength to strength enabling it to enhance its
families and the different needs of those of us that are older support of both care and research for the benefit of everyone
with children who have flown the coop. in the MND community.”
“I hope for a continuing development of engagement with
more and more people with MND and their carers and loved
Shaun McGee
ones and that development and other things leading to a
wider understanding of the difficulties and harms created by “I have a close family member living with MND, so as someone
MND. Beyond that, I hope that the optimistic view taken of who is affected by MND I’ve been able to see what a complex
the prospects for finding a cure continues in 2021 and that we journey this can be for the patient, family and friends. I’ve
perhaps find one preferred single pathway towards a solution also seen how in some ways, the care and advice offered isn’t
on which all can concentrate.” always ‘joined up’.
“My professional background, working as an NHS Consultant
and experience working with other charities, has given me
Catherine Knights skills that I anticipated might be of potential benefit to the
“My understanding of the devastating impact of MND, not Association. I was therefore delighted to become a co-opted
only on individuals, but everyone around them, came from trustee in early 2020, just as I approached retirement.”
my background as a physiotherapist working for more than “I am now a member of the Care Committee, Technology
20 years in community settings specialising in the care of Project Board and the Diversity, Equality and Inclusion Project
people living with MND. This included visiting them in their Board and this is certainly one of the most interesting and
own homes which gave me an insight into the huge range of varied roles I have held in my career. It has been truly humbling
challenges faced in all aspects of their lives. to be part of such a caring and forward-looking community,
“My last role before retirement in 2016 was as the Clinical and to work with a range of people who, whatever their
Care Co-ordinator for the King’s MND Care and Research skillsets and professional backgrounds, all carry such passion
Centre for six years. During this time, I worked closely with local for the cause of the Association.
branches and all aspects of the Association to support people “In 2021 I hope the whole community continues to stay safe
and their families living with MND – my post at King’s was and that the Association’s financial performance is sustained so
funded by the Association. I always wanted to give something that we can maintain our commitment to care and research for
back when the time was right hence standing for election and all patients living with and affected by MND. I look forward to
becoming a trustee in 2019. contributing my best efforts as a trustee to bring this about.”
For more information about this year’s AGM please turn to page 14.
Elections will take place in June this year and
in addition to resolutions, we will be inviting
members to vote for candidates for election to
the MND Association’s Board of Trustees. Details
about how to take part will be issued soon and
successful candidates will be appointed at the
AGM which will be held on Thursday 1 July. We
encourage all of our members to use their vote
Voting opens 3 - 29 June in this year’s election.
www.mndassociation.org 23You can also read
