Nutrition Edition - Encephalitis Society

Edition
61 Autumn 2014
The Newsletter of The Encephalitis Society
Nutrition
Edition
Featuring articles on the importance of
healthy eating and our cook book
03
Foundations
Scheme
05
WED
Award
06
Retreat
Weekend
08
Your
Stories
12
Cook book
Launch
16
Fundraising
Focus
Foundations
Scheme
Regular giving in support of The Encephalitis Society
CEOWelcome
A message from Dr Ava Easton
“A hectic few months has been met with
award nominations, new faces joining
Team Encephalitis and some truly amazing
events.”
Hi Everyone
demonstrates that a small team like ours can achieve great
things!
Well it’s been another hectic few months for us at Encephalitis
HQ!
The cookbook launch was a triumph and a great way to
celebrate 18 months to two years of hard work by Tim and a
myriad of others including the staff team.
It’s wonderful to welcome three new Vice-Presidents to our
ranks, supporting us and championing our work. Please give
them an ‘Encephalitis Family’ welcome when you meet them
over the coming months at Society events and meetings.
It is also super humbling and wonderful to be nominated
for two awards in relation to The Society. Rising CEO star,
which is a little embarrassing, however there would be no
rising CEO without the amazing team I have behind me so
we are choosing to see it as a representation of the work of
The Society more broadly! Seeing World Encephalitis Day
selected for a PRide Award really makes us proud and I think
What do you do with your
newsletter when you’ve finished
with it?
Please don’t bin it, it’s a useful tool in
the campaign to increase awareness
of Encephalitis - take it to your
doctor’s surgery, local dentist or
hospital waiting room and leave it for
others to read.
Contributions to the newsletter are
welcome and can be sent in at any
time.The Encephalitis Society does
not necessarily share all the views and
opinions expressed in the newsletter.
02
There have been a number of meetings and events with more
to come. I was sad to miss my first ever Retreat Weekend this
year as I was representing The Society in Australia. Phillippa
and Jon pulled off an amazing Foodie and Forager’s Weekend
in spite of the weather. A video of the event, along with that
of the cook book launch will be online soon from our Media
Centre at www.encephalitis.info/videos
I’m looking forward to the Annual Members Meeting in
November and to the Theatre Trip planned for the night before.
I hope to see some familiar faces there – it’s a great play and is
sure to keep us amused.
So until then take care and we look forward to catching up with
you all soon!
Find us online!
www.encephalitis.info
Watch our Society videos on YouTube!
www.youtube.com/EncephalitisSociety
Join the Facebook Community:
www.facebook.com/EncephalitisSociety
The Encephalitis Society
32 Castlegate, Malton, YO17 7DT
Follow the official charity account:
www.twitter.com/@encephalitis
Support: +44 (0)1653 699599
support@encephalitis.info
Follow Chief Executive Ava Easton:
www.twitter.com/@encephalitisava
Admin: +44 (0)1653 692583
admin@encephalitis.info
Follow Fundraising Coordinatior Rosie:
www.twitter.com/@fundraisingTES
Registered charity number: 1087843
Registered company number: 4189027
Find us online at www.encephalitis.info
SocietyNews
New Regular Giving scheme launched
The Society has launched a brand new regular giving
scheme aimed at creating a sustainable source of
income to support the charity for years to come
Foundations Scheme
We have revamped and rebranded our regular giving
scheme! Previously known as ‘Bricks & Mortar,’ it is now
known as the ‘Foundations Scheme.’ We are launching
an all new section on our website for the scheme which
we will have fully operational in September.
For the new scheme we have devised new ways of
informing donors on just how their money is utilised by
The Society and why it is so important to us.
Regular donations, be they monthly, quarterly or annually
are vitally important as they allow us to budget, plan
ahead and commit with confidence to support the
thousands of individuals and their families who rely on
us.
today
Sign up
to join the Foundations Scheme
Complete your details below
• Help provide doctors and teachers with the latest
resources and information on Encephalitis, allowing
them to make more information treatment and
education decisions
• Help us to provide unique events to our Members,
enabling them to better cope with the devastation
caused by Encephalitis
These are just some of the ways your monthly donation
will help.
Visit www.encephalitis.info/foundations to find out more
and to sign up today.
It only takes a couple of
minutes to sign up and.
participants of the scheme
will be entered into an
annual prize draw and
receive special updates on
where their money goes.
The Enc eph alit is Soc iety
h for Inflammation of the
Support, Awareness & Researc
Brain
Monthly donations are of enormous value to us, as we
receive no statutory funding. They enable us to reach
.info
people affected by Encephalitis all overww
the
and
ncephalitis
w.eworld,
allow us to transform many more lives.
By making a monthly donation, you can:
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Address
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via your own bank
order
supply your own
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us your contact
correct mailings please send
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standing order
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up
set
indicate that you have
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fill in the details below
a standing order for you, please
If you would like us to set up
Setting up your own standing
Name of bank
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32 Castlegate, Malton, North
- support@encephalitis.info
Support +44 (0)1653 699599
- admin@encephalitis.info
Admin +44 (0)1653 692583
twitter.com/encephalitis
ociety
facebook.com/encephalitiss
ncephalitis-society
• Help us run our support services which are
continuously growing and reaching new individuals and
families in need
Branch address
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6
Sort Code 405240 Account 0008257
Credit: The Encephalitis Society
(in words)
The sum of £
Year
and thereafter every Month
Date commencing
Date
Signature
s
donation
present & future
Gift Aid Declaration - for past, ns all qualifying monetary gifts made
Please treat as Gift Aid donatio
in the future
in the past 4 years
today
to the
like all donations I have made
I am a UK taxpayer and would 4 years and all future donations to be
last
Encephalitis society in the
otherwise.
Gift Aided until I notify you
Sort code
gains
of income tax and/or capital
Aid, you must pay an amount
To be eligible to claim Gift
your donations in the year.
that the charity reclaims on
tax at least equal to the tax
linkedin.com/company/the-e
Wilson OBE
President: Professor Barbara
Robert Sutton
Lockwood, Tiggy Sutton and
Vice-Presidents: Richard
Cahalan,
OBE, Mathew Bose, Susannah
Ambassadors: Rebecca Adlington
ne
Hattensto
Aliki Chrysochou and Simon
Encephalitis Support Group.
the operating name of the
The Encephalitis Society is
1087843
Registered Charity Number:
4189027
in England and Wales Number:
Charitable Company registered
tions Scheme
Founda
Society
in support of The Encephalitis
Regular giving
Support: +44 (0)1653 699599 / support@encephalitis.info
03
SocietyNews
The latest updates on our work
It’s been an exciting few months at Encephalitis HQ with
new projects underway, new plans for the future and
several new additions to Team Encephalitis
Honours for Ava
On your bike!
As some of you may have already heard, Chief Executive
Ava Easton recently became Dr Ava Easton after
successfully completing her PhD at York University.
Ava’s doctorate covered key aspects of Encephalitis and
further cements her vast knowledge in the field. Ava’s
extensive work in Encephalitis over the past few years
was recently recognised by The Charity Times awards
where Ava has been announced as a finalist in the
‘Rising CEO Star’ category. The awards ceremony takes
place in October this year and we’ll let you all know
should Ava walk away with the coveted prize.
Fundraising Coordinator Rosie Mellor joined Team
Encephalitis in October 2013, and has been hard at
work ever since developing a new fundraising strategy
and bringing new ideas to the charity to take us forward
into a sustainable future. Never one to shy away from
a challenge, Rosie will be taking on a 280mile cycling
challenge in September to raise funds for The Society.
The University of Liverpool also saw fit to recognise
Ava’s work and announced in June that Ava is to be
made an Honorary Fellow, following many years of
working closely with the research team at the Institute of
Infection and Global Health.
Rosie will depart from London hoping to reach Paris in
under 24 hours! She’s been training non-stop for the past
few months, getting in shape for the gruelling journey. If
you want to see updates from Rosie or sponsor her, visit
www.justgiving.com/rosie-mellor1
NeuroAccess
Dr Benedict Michael and Dr Sam Nightingale headed
for Africa once again earlier this year to share their
neurological expertise with trainees from Mozambique.
They spent just over a week teaching classes, doing
rounds and consulting on patients in the hospital.
We’re incredibly proud of their efforts. You can see
photos from their journey and read more about their trip
on our website at www.encephalitis.info/neuroaccess
04
Find us online at www.encephalitis.info
SocietyNews
Find more at www.encephalitis.info/news
‘WED’ wows the judges
Trio of Vice-Presidents join the team
In other awards news, we are delighted to announce
that ‘World Encephalitis Day’ has been nominated for an
award! The Chartered Institute of Public Relations saw fit
to place The Society amongst a number of finalists from
Yorkshire and Lincolnshire. We are in fact the only charity
finalist, with all other nominees being PR companies
from around the region. We’re delighted to have our
work recognised alongside the mass of PR experts in
Yorkshire and we’d like to say a massive thank you to
everyone who got involved with World Encephalitis Day
on February 22nd.
We are delighted to have added 3 new Vice-Presidents
to Team Encephalitis in June this year. Richard
Lockwood accepted the role after discovering our work
through his involvement with The October Club. Tiggy
and Robert Sutton were also inaugurated as VicePresidents. Tiggy and Robert lost their son Jonny to
Encephalitis in 2008 and have been keen supporters
of The Society ever since, organising a number of
successful fundraising events over the past 6 years.
Honours for Professional Panel
Professional Panel member, Professor Peter Kennedy
CBE, has been awarded the Sir James Black Medal
2014 in recognition of his outstanding contribution to the
field of tropical medicine through his pioneering work on
human African trypanosomiasis (sleeping sickness) and
Neurovirology.
Society President, Professor Barbara Wilson OBE has
also been honoured with the “Distinguis​hed Lifetime
Contributi​on to Neuropsych​ology” Award from the
National Academy of Neuropsychology.
These are 2 of the highest awards in their respective
fields. Congratulations from all the team.
Admin: +44 (0)1653 692583 / admin@encephalitis.info
05
TheRetreat
The Team heads back to Wales for The Retreat Weekend
Foodie & Foragers!
Nestled in the heart of Wales, Buckland Hall provided the
perfect backdrop for another amazing Retreat Weekend
Jon and Phillippa were the hosts for the 2014 Retreat
Weekend, which this time had a Foodie and Foragers
theme.
Guests were welcomed on the Friday evening with
glorious sunshine, beautiful surroundings and faces
both old and new! Unfortunately, the sunshine wasn’t to
last but that didn’t affect our tasty Chocolate Workshop
with Black Mountain Gold Chocolates. We got to try
LOTS of chocolate and learn about the many benefits of
chocolate – unfortunately it isn’t as beneficial to eat vast
quantities of it.
We then very bravely fought the elements and went
foraging with expert Alan Cree from Blue Ocean
Activities. We all tried various plants and tried to
convince ourselves that beech leaves taste like
apples! Ponchos were at the ready and it was all great
fun, particularly sitting by the roaring fires to dry off
afterwards.
Saturday evening we enjoyed a fascinating talk from
Penny Lewis, who has been a chef to the Queen! She
offered some great anecdotes and tips on how to keep
calm in the kitchen!
Sunday afternoon saw us with Karen Crockett, from the
Survival School. Karen taught us how to make fire and
then make our own bread – amazing! Plus it didn’t rain
too much.
The weekend always goes really quickly but the most
important part of the weekend is bringing people
together that have been through the experience of
Encephalitis, be it themselves or as a family member.
It is the opportunity to be in an environment full of
understanding and compassion that have can have a
profound impact for recovery and renewed strength.
The Retreat is a privilege for The Society to host and our
Members constantly inspire us.
Thank you to Buckland Hall and their team for looking
after us so well! A big thank you to Hazel for once again
giving everyone amazing massages over the weekend
and a big thank you to the Friendly Hand who without
their support we would not be able to fund this amazing
and valuable weekend for our Members. Thank you.
Get the next Retreat dates in your diaries now – Friday
20th – Monday 23rd May 2016!
06
Find us online at www.encephalitis.info
Like us at www.facebook.com/encephalitissociety
07
YourStories
Sharing the experience of Encephalitis
Nigel’s story
Nigel was diagnosed with Encephalitis at aged 15, long
before The Encephalitis Society was established. He grew
up without the support that we now provide
I am 51yrs old, married with 4 children and I became
ill when I was 15yrs old. I don’t have much memory of
that time but it started with a migraine (something I had
as a child) after that I don’t remember much but was
admitted to hospital after a painful lumbar puncture I
was diagnosed with the illness.
I spent time in hospital before going home to recover.
I missed out on a lot of schooling that year. Afterwards
I withdrew from things and I had temper/anger issues.
I don’t recall receiving the same sort of help that is
available now.
I had to cope and bumble along not understanding or
knowing why my memory was bad, why I was moody,
short tempered and aggressive. I grew up in an alien
world. I learnt to hide what was going on in my head and
apart from aggressive outbursts I succeeded. Growing
up I saw many psychiatrists, had a mental breakdown
and I spent a short time in a mental health hospital. I
always thought that I was a bit of a cuckoo and slightly
mad, not realising that this was a result of my illness!
It was not until I was in my forties that I came across the
charity called Headway. I had various tests done and
they explained to me about my illness and its effects. I
suffer with depression and go though times where I am
okay and then I drop of the edge.
I have worked fulltime since I was sixteen and never
given myself any slack, just telling myself to ‘man up’
and get on with it. I have four lovely children aged from
12yrs to 22yrs and to say it was a challenge would be an
understatement.
My patience & coping with noise levels etc, has been an
issue, and anyone with children will know how hard it
can be. I am married to a very patient person who knows
when to step in and calm me down, without her support
08
I would struggle to manage with bills, school parentsevenings, annoying questions and the bug bears of
everyday life.
I have had a big setback in the last year and managed to
get to see a NHS head injuries centre and suddenly all
my oddities became clear and for the first time I began
to understand things better.
For the first time I spoke to a boss and with my
physiologist sat down and said this is what illness I
had and this is what I need to do to work with it. Not
only that but told my eldest children about it and what
I needed from them. The ‘in’ joke now is that dad’s
‘special ‘but it means they know not to rely on my
memory or to push things and to give me space when I
need it.
I have lots of coping strategies that I have built up over
the years. The era of tablets/mobile phones is helping
me to remember things, but I had to learn and I am
getting there slowly but surely. It would explain why
there are funny stories in the family of leaving children in
shops or shopping behind the car and reversing over it
etc.
I find it hard to deal with change, routine etc. I know
this might seem negative and life’s bad but I have been
battling though day in and day out not understanding
why all the above was going on.
Now my wife says whatever I’ve been through, I have
good kids and I’ve been working, so that’s a positive
which is true but I have a lot of things that I need to
do to move forward, and at the same time my world’s
changing. My kids are growing up and moving on in life
and changing jobs and guess what? I don’t do change
Argh!!!
Find us online at www.encephalitis.info
YourStories
Contact comms@encephalitis.info with your story
Shane’s story
Shane was misdiagnosed for
many months before receiving
the correct treatment
My condition started to affect me towards the middle
of 2011, but as I was going through a very difficult time
in my life, I thought that it was quite simply stress and
depression caused by my situation.
The symptoms crept up on me without my knowing, as I
had never heard of Encephalitis before. The symptoms
got worse and as the end of 2011 approached I felt that I
should go to my Doctor. I was diagnosed with stress and
depression and prescribed mild anti-depressants, but
my symptoms only got worse from then on.
Around that time my sister came to stay with me, to help
out. During her stay, my condition worsened and my
sister forced me to return to my Doctor, who was still
convinced that it was stress and depression.
After my sister left, things only got worse and I began to
have very strange thoughts and fears about everything
and I withdrew myself from everyday life. Things then
reached such a low point that I tried to commit suicide.
In hindsight, I feel this was a cry for help as I texted
my sister and my partner Caroline to say goodbye.
Fortunately they called the emergency services and I
was rushed into Aberdeen Royal Infirmary.
It was decided that I should move in with my partner
Caroline who lived in Nairn. My symptoms only got
worse and in early April 2012 I had a terrible night not
sleeping and my mind was playing awful tricks on me.
I was thinking that I should end my life so I decided to
leave the flat. My partner tried to stop me from leaving
the flat but after a long struggle with her I ran out of the
flat. I was stopped by Police and taken to hospital where
where I was detained under the Mental Health Act.
It was deemed that I was suffering from psychosis and
depression and was detained for my own safety and that
of others. By this time my symptoms were severe and I
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had begun blacking out and collapsing and usually spent
all my time in bed.
Part of my treatment included having regular blood
samples sent to a specialist laboratory in Oxford. It was
as a result of one such sample that I tested positive for
Limbic Encephalitis. I was taken right away to Raigmore
Hospital and was placed onto an intensive treatment of
IV Immunoglobulin and a very high dose of steroids.
My recovery has been painstakingly slow. I was on
steroid medication for over a year and after nearly two
years since becoming ill, I have still not fully recovered.
I have been left with many issues such as headaches,
fatigue, sweating, joint pain, severe mood swings, anger,
and verbal aggression. I have found that I have been
ostracised by family members who either don’t care or
understand what Encephalitis is. I was recommended
to The Encephalitis Society and have found it to be an
extremely helpful resource.
I still attend Hospital on a regular basis to see both my
Consultant Neurologist and Psychiatrist and my hope is
that I will recover to a point where I can return to work
and to a normal life. I married my partner Caroline in
June last year and without her I’m sure I would not be
here today. I have discovered myself again in my friends
and in music by spending long afternoons by the beach
in Nairn and I feel lucky about how ill I was and how
close to death I came to be able to tell this story.
09
GuestArticle
Society Ambassador Mathew Bose
Mathew is qualified Personal
Development Therapist and
Nutritionist and gives his expert
opinion on ‘feeding our brains’
There are many aspects to a healthy body and lifestyle
but the fuel we give our bodies can often feel like a far
too complex subject for us to seriously tackle. However,
I believe that the key to healthy eating is having a
basic knowledge of how your body actually works and
processes food. Armed with that knowledge we can
begin to give our bodies the things it really needs to
keep us feeling lovely and vibrant.
Our brain cells need twice the energy than the other cells
in our body need. These 100 billion ‘neurons’ in our brain
never stop working, creating, connecting and rebuilding.
So, it is vital to give them all the things they need to keep
us as fabulous as we quite clearly are.
Essentially, fats build your brain and proteins then
enable it to do its work. Carbohydrates fuel it and micronutrients defend it…so eating a balanced, varied diet is
what you aim for to keep your brain happy.
Fats: At least two thirds of your brain is made of fat.
The brain uses all fats (yes, even saturated) to build
and regenerate itself and keep everything in the best
possible working order. Keeping the oxygen, glucose
and antioxidants needed for optimum function going
in and the metabolic waste going out. A key fat is the
EFA (Essential Fatty Acid) Omega 3 which, like its
more abundant sister Omega 6, cannot be made in the
body and must be obtained through the diet. The ratio
between Omega 3 and 6 is key. Most of us consume far
too much Omega 6 and too little 3. To redress this, try to
avoid processed oils/fats (e.g. vegetable oil, margarine)
and go for organic, unrefined oils/fats (e.g. olive oil,
butter).
Proteins: When protein is digested, it is broken down
into its constituent amino acids, which is then rebuilt
into the different types of proteins needed to function
e.g. neuro-transmitters, enzymes and hormones. Eight
of these amino acids are called ‘essential’, as your body
10
cannot produce them and so must obtain them from
your diet. Food sources of all eight essential amino acids
are called complete proteins and include meat, poultry
and fish, eggs and diary. Incomplete proteins, containing
only some of the eight, include grains, nuts, seeds and
beans.
Of course, meat and animal products, like eggs and
milk, are really only as good as the feed the animal itself
was given, so try to go for the best reared and best fed
that you possibly can.
Carbohydrates: When carbohydrates are digested, they
are broken down mostly into glucose, a simple form of
sugar that provides energy to the body and brain alike.
Glucose is the brain’s primary energy source but brain
cells cannot store it. Therefore, they require a steady
supply of glucose be delivered through the bloodstream.
Notice glucose, not sugar. Refined or added sugars, as
found in most shop bought foods, hit the bloodstream
too quickly and this peaks and crashes your brain, which
inflames and stresses it. Or it actually deprives the brain
of glucose because the high blood sugar levels trigger
the pancreas to produce insulin to store the excess
glucose before it ever reaches the brain. Complex
carbohydrates, as found in whole fruits and vegetables,
legumes and whole grains, provide the brain and body
with a healthier and more steady supply of glucose.
Slow down the journey of carbs through your body by
combining with fats and protein. E.g. eggs on whole
grain toast will keep you fuller for longer and give your
brain a nice steady supply of energy.
Micro-nutrients: The brain relies on anti-oxidants
to protect it from damage. Oxygen balance is key to
brain health, as it can be as harmful to the brain as it
is vital. Certain forms of oxygen, called free radicals,
can damage brain cells but anti-oxidants, as found
abundantly in fruits and vegetables, neutralize these
Find us online at www.encephalitis.info
MathewBose
Read more at www.mathewbose.com
before they can cause any damage. Vitamins C, D, E, K
and the B complex as well as the minerals iron, copper,
magnesium, manganese, zinc, iodine and lithium are all
cited as necessary for different brain functions.
Flax seeds: Tricky to incorporate I’ll admit, but they
come in various versions and a few sprinkled here and
there will never be noticed by your emotional eating self
but will be cherished and adored by your brain!
Be aware that some vitamins are destroyed by exposure
to oxygen or heat (processing, pasturisation etc.) so try
to eat some fruits and vegetables in their lovely fresh
raw state!
Tempeh: A soya protein that keeps the blood sugar
stable and is super healthy all round. It’s heaps cheaper
than meat and to get the same benefits you’d have
to buy organic, grass reared beef. It’s not that easy
to find and it won’t be in a local supermarket, but any
independent health food shop or Chinese style Asian
market will have it. Try to get a really good quality one
that has been as organically produced as possible.
Some foods with mega brain bounty are:
Oily fish: Well, you’ve heard this countless times I’m
sure. Fish is brain food! The key is in the EFA Omega 3.
Okay, I know there’ll be wrinkling of noses here as we
are a society of cod and haddock eaters but think of
the near depletion of these less healthy fish and switch
to their healthier, easily available (tinned) and much
cheaper brethren such as mackerel.
Nuts: Walnuts and almonds for instance are a perfect
brain snack. A perfect balance of protein, fat, fibre and
vitamins with minerals.
Strawberries and blueberries: Awesome sources of
those power anti-oxidants your brain needs to keep any
free radicals harmless. Vitamins C and E are especially
useful to the brain.
Greek yoghurt: The full fat version (really it’s only a
teeny bit fattier than that skimmed nonsense and the bit
that gets skimmed is actually the healthy bit!) It also has
tyrosine in which gives you a mental boost of alertness!
Beans: Packed with B vitamins and fibre these slow
release (complex) carbohydrates are a boon to mind and
body. Store cupboard stalwarts and cheap too!
Eggs: Free range and organic eggs contain choline,
which is a brain nutrient extraordinaire.
Cold pressed oils: Olive, avocado, flax and walnut – I
also use these on my body instead of moisturiser but
that’s another story…
Herbs: Sage and rosemary are considered to be the
most powerful brain tonics while basil, nutmeg and
coriander are linked with brain mood. Chilli and ginger
also affect the brain as they open up those tiny blood
vessels and get the blood flowing (also assisting the
circulatory and digestive systems – all good)! You sweat
from the ‘heat’ and your brain is lavished in oxygen and
iron rich blood. Bliss.
Treat your brain to lots of laughter and moderate
exercise. Turn off that TV and ask it to learn a new skill,
think positive, solve puzzles, draw and listen to music
or read…and get some proper sleep…not necessarily
in that order or all at once but start as you mean to go
on!
Mathew
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11
CookBookLaunch
Food for thought...and brain gets a fitting event
After months of painstaking planning,
cooking, photography, design and
proof-reading, our first ever cookbook
is ready to order
On a wet and windy day in June, the team headed down
to London for the long-awaited launch of ‘Food for
thought…and brain,’ The Society’s first ever cook book.
Regional Representative for Hampshire, Tim Bond, has
spent months putting the book together with help from
the team at Encephalitis HQ. We secured sponsorship,
pledges and some wonderful recipes from top chefs
around the country.
Taking place at the incredible Cannon Bridge Rooftop
Gardens, the event was complimented by stunning
12
views down the River Thames and a touch of sunshine
later in the afternoon. Around 100 of our lovely Members
and special guests made the trip to London for the event
and to get their hands on the book before anyone else.
There were cooking demonstrations from Tim Bond and
Tonia Buxton, who rustled up a section of healthy and
easy to make dips and snacks to whet the appetite.
The event was also used to welcome three new VicePresidents to The Society. Richard Lockwood first
came into contact with the charity through his work
Find us online at www.encephalitis.info
CannonBridgeRooftopGardens
June 28th 2014
with The October Club. He was blown away by Ava’s
presentation to their charity selection committee and
has met with Ava several times to offer advice and
guidance. He was delighted to have been invited to
become a Vice-President, and we’re extremely grateful
for his support. We’re looking forward to working with
Richard long into the future. Tiggy and Robert Sutton
were also inaugurated as Vice-Presidents, although due
to unforeseen circumstances, they were unable to make
it to the event itself. Tiggy and Robert lost their son,
Jonny, to Encephalitis in 2008 and have been staunch
supporters of our work as well as dedicated fundraisers
ever since. We’re delighted to have them on-board and
are certain that they will help us to go from strength to
strength for many years to come.
Sales of the book have been going well, and make the
perfect gift for a friend or loved-one. As a result of the
cook book, we’ve had a number of articles in the press,
included a double-page feature in the Southern Echo,
and a 25 minute segment on BBC Radio Solent.
If you missed the event, head over to our online media
centre at www.encephalitis.info/videos to see what we
got up to on the day.
Tim will be continuing to dedicate his own time to the
promotion of the book and already has 2 events on
the horizon. In October, Tim will be hosting a special
‘Chef’s Table’ event at the Cookery School in Malton.
There will be just 12 tickets available priced at around
£50 each and will include wine, a 3-course meal and a
copy of the Cook Book. Guests will spend the evening
watching their dinner being freshly prepared right
before their eyes, using fresh ingredients and Tim’s
own flair for cooking.
Tim will also be hosting an event at the Ryedale
Book Festival in October. He will be recounting his
experience of Encephalitis and how he came to utilise
cooking to aid his recovery. The event costs just £5
and is taking place at ‘The Yard’ in Malton. Copies of
the book will be available to purchase and Tim will be
on hand for a post-event book signing.
To secure your tickets to these amazing events, visit
www.encephalitis.info/cookbook today!
Purchasing a copy of ‘Food for thought...and brain’ for
yourself or a loved one, is a great way to support The
Society. Visit www.encephalitis.info/shop to get your
copy today!
Write to us at The Encephalitis Society, 32 Castlegate, Malton, YO17 7DT
13
GetToKnow
Fundraising Coordinator - Rosie Mellor
Rosie organises our fundraising
efforts, from booking race places to
helping our fundraisers organise their
own events
How did you become involved with The Society?
Having just returned from an internship in Uganda I
was looking for a more permanent job a bit closer to
home and happened across The Encephalitis Society
advertising for a fundraising coordinator. Throughout
university I volunteered as a fundraiser and fell in love
with the profession and the job with The Society seemed
like a great opportunity, and has turned out to be a pretty
perfect fit!
What is your vision for The Society over the next
five years?
To continue raising awareness about Encephalitis,
and developing further internationally. As a fundraiser
it would be great to see us expand our event places
overseas for our international supporters to get involved
in.
What is your best or funniest moment of working
with The Society?
In July 2013 I headed to London for the British 10K. We
had 12 amazing runners taking part, and it was great fun
getting to meet them all and to cheer them on!
What do you do away from work?
I spend as much time as possible outside, mainly
disappearing into the countryside with my 2 labradors,
Holly and Tulla. I also play netball for my local team
– due to being reasonably tall I’m always either Goal
Keeper or Goal Defence. Travel is a big love of mine – I
have lived all over the world and I try to visit somewhere
new at least once a year.
14
QUICK QUESTIONS
What’s your favourite book, and why?
The Bone Women by Clea Koff is one of my favorites.
I first read it when I was about 14 and it started my
interest and love for Anthropology, which I went on to
study at University – a decision that was very much a
result of this book.
What’s your favourite film, and why?
Pan’s Labyrinth – I don’t know what it is about this
film but I can watch it over and over again, and it’s
about the level of horror that I can handle.
Whom do you most admire, and why?
My parents. They have always encouraged and
supported me to tackle new things, push myself and
go and explore the world. I wouldn’t have had half the
experiences or opportunities I’ve had I if it wasn’t for
them.
If you could invite 3 people (past and present) to
dinner who would they be and why?
Sandra Oh – I LOVE Grey’s Anatomy and I think
Sandra Oh’s character Yang was incredible so she
would be a dream dinner guest. Barack Obama. I
think he comes across as a genuinely nice guy, plus
his characteristics remind me of my dad. Darcey
Bussel, a long time idol of mine. Having been
classically trained in ballet, I love going to watch her
perform. I even named my first dog after her!
Find us online at www.encephalitis.info
GetToKnow
Neuropsychologist - Bonnie-Kate Dewar
Bonnie-Kate has been involved with
our work for more than a decade.
Her expertise has helped shape our
information & services
How did you become involved with The Society?
I became involved I The Society when I worked for
Barbara Wilson at the MRC Cognition and Brain
Sciences Unit in 2004. We were conducting research
into memory rehabilitation and approached The Society
for possible participants. I then had the opportunity to
work closely with a number of people who had survived
Encephalitis and become more involved in The Society.
What is your vision for The Society over the next
five years?
To develop and maintain a unique Neuropsychology
service for people in the UK with Encephalitis and
their families. For The Society to continue to raise
awareness of Encephalitis in the general public and thus
stimulate further services for survivors and their families,
particularly for children and young people.
What is your occupation?
I am a clinical Neuropsychologist. I currently work in
private practice in central London.
What is your best or funniest moment of working
with The Society?
The Thames river cruise in 2007. Martin Kemp was a
patron of The Society at the time and I was a past fan
of Spandau Ballet so it was funny to meet him. I think I
made him feel very old!
What do you do away from work?
Away from work, I spend time with my kids, aged 4 and
6. They take up a lot of my time, surprise me and make
me laugh. Otherwise, I enjoy the theatre, jumping on
a plane and travelling to new places, catching up with
friends, searching for good restaurants and in a former
life before kids I used to scuba dive.
Follow Rosie at www.twitter.com/fundraisingTES
QUICK QUESTIONS
What’s your favourite book, and why?
Such a hard question! I would say the Poisonwood
Bible by Barbara Kingsolver. A heart wrenching story,
with an enlightening presentation of characters and
relationships. Cloudstreet by Tim Winton is another
favourite.
What’s your favourite film, and why?
The English Patient. Small moments of beauty woven
into a romantic tale. Beautiful cinematography.
Whom do you most admire, and why?
I’m lucky to meet inspiring people on a regular basis
through work. Today, in particular, I admire my good
friend Amy. A social worker in palliative care, she
meets life with patience, fortitude, a sparkling laugh
and a great sense of fun.
If you could invite 3 people (past and present)
to dinner who would they be and why?
This morning I need to say Robin Williams, for the
combination of humour and pathos that appears to
have been part of his life; Hilary Clinton as she is such
a strong woman and a great role model; and George
Clooney- for the conversation of course!
15
FundraisingFocus
Recognising our amazing fundraisers
Dean raises funds in memory of
brother Daryl
Dean and his family have been raising money for The
Encephalitis Society, in memory of his brother, Daryl Dyke
who sadly passed away from Encephalitis 8 years ago.
After the death of Daryl (aged 23yrs) Dean found that
running provided him with time to himself to cope, whilst
the challenges he set himself always seemed achievable
after seeing what his brother had endured with the illness.
Having watched the London Marathon on TV and being inspired by other people’s
fundraising stories Dean decided that he wanted to run the marathon for The Society.
7 years of unsuccessful ballot entries culminated this year, when his local running club
received an additional ballot place and Dean’s name was drawn out of the hat!
On April 13th 2014 Dean finally got to line up at Greenwich for the start of the London
marathon.
Dean explains “I was surprised just how emotional I was on completing the race, more
so as I felt some closure as this was where it all started for me with this goal in mind.”
Through his fundraising Dean has raised a staggering £1,656. From everyone at The
Encephalitis Society, we are incredibly grateful for your support, and we know many
people will now go on to be inspired by your very own fundraising story.
Fundraisers
galore!
Zachary Huselid
completed the Wester
States Endurance Run in
America, which is a 100
mile race!
Paul Amourdedieu has
raised £1,255 for us by
taking on the Sunders
Lakeland Mountain
Marathon.
The Skye Half Marathon
was completed by Tracey
Logan raising over
£1,155. Not bad for her
first fundraising event for
The Society!
16
Dan goes from
coast to coast
Cycling 155 miles from
coast to coast, Dan Tyler
has raised over £1,200
in memory of his brother
Adam, who sadly passed
away from Encephalitis.
Great South Run
Each year this event
proves really popular with
our supporters. Running
this 10 mile flat route
through Portsmouth,
taking in some beautiful
views on the Isle of Wight.
What’s not to love! We
have 9 places remaining
so to secure yours get in
touch with Rosie at
rosie@encephalitis.info
No mountain high enough for Rebecca
At the end of June this year Rebecca Roost took on
the challenge of climbing Ben Nevis, all in the name of
fundraising. Rebecca’s mum, Julie Roost (who is one of
our wonderful Regional Reps!) contracted HSV MeningoEncephalitis in 2007.
At the time she did not know what was wrong but felt she
had flu-like symptoms. Luckily her doctor referred her to
hospital for tests. The last thing she remembers is having
an MRI scan. Three-days later she awoke from a medically-induced coma having
suffered numerous seizures.
Rebecca said ‘My parents were suddenly plunged into darkness and had to learn how
to deal with mum’s struggling health and newly acquired brain injury without knowing
who to turn to for help. Luckily one day they found The Encephalitis Society website.
My mum has benefitted a huge amount from The Society’s support and I have proudly
watched her regain her confidence and self-motivation to be an outstanding Regional
Representative for the Society in the South West. This is why I am trying to raise money
for The Encephalitis Society so that it can continue its invaluable work.’
We would like to say a huge thank you to Rebecca for taking on such an epic
challenge. Rebecca has so far raised £1,505 which is incredible!
Find us online at www.encephalitis.info
FundraisingFocus
Support our work today and visit www.encephalitis.info/fundraising
Tom, Hannah & friends raise funds in memory of baby George
Tom and Hannah Willson suffered a devastating loss in 2013 when their son George
sadly passed away in his sleep from Encephalitis. This has led them to become
passionate fundraisers for The Society.
“In November last year, our 18 month old son George went to bed as normal. Normally
George would wake us up in the morning, singing to himself in his cot, but this morning
was quiet. Hannah went to wake him to get ready for nursery, and found he had
passed away in the night. The post mortem results came through that he had died
from brainstem Encephalitis, but where he contracted that, there was no answer. That
morning in November has completely broken our hearts.”
“We got married a month before George died, and at the time instead of a wedding list we asked for money to be
donated to charity. After George died, we decided to donate the money to The Encephalitis Society’s research fund.
We are desperate to help in researching Encephalitis, to try to understand why it had to take our beloved, smiley and
healthy boy.”
We are always amazed at how generous people can be, especially throughout such a sad time. The Encephalitis
Society would like to express our deepest condolences for the loss of George, and say a massive thank you to Tom,
Hannah and their friends for their fundraising efforts. We are so grateful.
If you would like to support the girls in their Thames Path Challenge please visit their Just Giving page at
www.justgiving.com/Walking-for-George
The 3 peaks challenges!
Steve Thompson took on the National 3 Peaks with 5 of
his friends and together they raised over £1,500.
Steve and his family popped into the office to drop off
the money they raised and to say hi to the team.
Taking on the Welsh 3 Peaks, Heini Jones has raised
£1,000 which is amazing!
We are incredibly thankful to every single one of our
fundraisers who raise money for us, and together you
have all made the last 3 months the most successful yet
in terms of fundraising!
Follow Ava at www.twitter.com/encephalitisava
12-strong
team, run for
Encephalitis!
July 13th saw thousands
of people participate in the
British 10k, running a route
which passed all the iconic
sites of London. We had
12 runners taking part, and so Rosie headed down to
London to cheer them on and grab them for some nice
sweaty photos at the finish line!
17
CallsToAction
Research, studies and ways to get involved
Professional Seminar
Our Professional Seminar is
fast approaching. Offering
the latest research updates
and information from
leading professionals, this
is the foremost seminar for
professionals working in an
Encephalitis related field.
Taking place in London on
Monday 1st December, be
sure to book your place
soon. We have a number
of information leaflets
available should you wish
to distribute some to
your local hospital. Get
in touch with the office
for more details on
+44 (0)1653 692583 or
admin@encephalitis.info
Research Study
We are also assisting the University of East Anglia with
a study on how brain injury affects development. The
purpose of this study is to look at how young people
with a brain injury develop compared to people of the
same age who do not have a brain injury. We want to
know more about how brain injuries affect the way
people think and act. Damage to the brain can affect
various aspects of peoples’ lives and the more we know
about this, the better we will be able to help young
people who have a brain injury. This study is part of a
PhD project.
If you are aged 16 or over and interested in taking part
in the study, or you are interested in your child taking
part, you can contact the researcher directly by emailing
beverley.garrigan@uea.ac.uk, or phoning 07910 231258
(if there is no answer, please leave a message with your
name and number and the researcher will call you back).
For more information about this research, visit www.uea.
ac.uk/medicine/neuropsychology/research
Research Study
We are currently assisting Anglia Ruskin University
in recruiting participants for their Prosopagnosia
study. The aim of this study is to shed further light on
self-recognition, by investigating potential temporal
recovery solutions to impaired self-face recognition in
prosopagnosia. The study will involve administering a
self-recognition task to individuals with prosopagnosia.
If you are interested in taking part, or you would like
further details, contact:
Dr Flavia Cardini: flavia.cardini@anglia.ac.uk
Dr Fiona Ashworth: fiona.ashworth@anglia.ac.uk
Telephone: 0845 196 2346 / 0845 196 5105
18
Our information resources are constantly assesed to
ensure they meet the rigorous NHS England Information
Standard. If you would like to help us review our
information resources to ensure they stay relevant and
accurate, then get in touch! Contact Alina at
alina@encephalitis.info or call +44 (0)1653 692583
Find us online at www.encephalitis.info
NoticeBoard
Interesting snippets
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19
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