As a baby and toddler Emma loved being active. But at age six she

touching
lives
The Action Medical Research magazine
As a baby and toddler
Emma loved being
active. But at age six
she was diagnosed
with Perthes’ disease.
Read her story
Autumn/winter 2013
Plus
How the Oxford
Foot Model is
helping children
to walk
Find out what
our celebrity
supporters have
been doing for
Action
Contents
Dear supporter
Welcome to our autumn issue of
Touching Lives.
As you’ll see as you leaf through
the
following pages, we’ve refreshed
the
design of this issue. Let us know
what
you think of our new look. We hop
e
you like it!
6
We’re ver y for tunate as a charity
to have so many committed
celebrity suppor ters, such as TV star
s Davina McCall, Dr Dawn
Harper and Phil Spencer to nam
e a few. See page 3 to find out
what they’ve been doing for Action
this year.
Our cover feature is about Emma
Thornton, who is 11 years old.
As a baby and toddler Emma love
d being active but at age six
she star ted having problems with
her mobility. It was a terrible
shock when Emma was diagnosed
with the painful illness Per thes’
disease that affects hip joints. Tur
n to page 9 to read about how
her family live with Emma’s conditi
on.
We have a track record in fundin
g research into mobility. Turn
to page 4 to read how 4,000 chil
dren a year are benefiting from
research we funded to help develo
p the Oxford Foot Model,
which is used to assess foot deform
ity and walking problems.
Find out how Grace is living with
the serious, incurable condition
Rett syndrome on page 6. Updat
es on new research can be
found on pages 11 to 13.
We’ve had a fantastic year at Act
ion and a glorious summer
but the nights are drawing in. Ma
ke your loved-ones happy this
Christmas with a personalised Pad
dington T-shirt on page 14,
or look at our back cover for det
ails of our exciting new range
of cards.
Thank you for suppor ting Action
– you are helping to fund vital
research for babies, children and
young people.
Wishing you all a peaceful autum
n and winter.
Touching Lives is Action Medical
Research’s magazine for
supporters.
Editor: Finola Robinson
Front cover photo: Ben Rector
Print: NB Group, UK
11
undraising news In the saddle
3 Fwith
Channel 4’s Embarrassing Bodies
presenter Dr Dawn Harper.
ur impact How the Oxford Foot
4 OModel
is helping children to walk.
money in Action Read our
6 Your
update on Grace and Rett syndrome.
a legacy A cause close to
7 Leave
Wendy’s heart.
over feature How Emma is
8 Ccoping
with Perthes’ disease.
ew research The devastating
11 Nimpact
of stillbirth, tackling bacterial
meningitis, congenital heart disease
and autism spectrum conditions.
undraising news Companies take
14 FAction;
try out our new cycle route
to Paris; and buy a personalised
Paddington T-shirt.
hallenge events What do you
15 Cfancy
doing to help raise funds?
Finola Robinson
Editor
Action Medical Research is a
UK-wide charity saving and
changing children’s lives through
medical research.
8
cards Stock up on
16 Courhristmas
cards for the festive season.
Please send all
communications to:
The Editor, Touching Lives,
Action Medical Research,
Vincent House, Horsham,
West Sussex RH12 2DP
T 01403 210406
E editor@action.org.uk
W action.org.uk
facebook.com/actionevents
twitter.com/actionmedres
Touching Lives is also available to
download at action.org.uk
touchinglives Autumn/winter 2013 We are keen to share, but you
must ask first! If you see an
article or a picture you would
like to copy or reproduce for
use elsewhere, please contact
the editor.
© Action Medical Research
2013
Action Medical Research is a
registered charity:
England and Wales no. 208701;
Scotland no. SC039284
action.org.uk
Fundraising news
In the saddle
with Dr Dawn
TV doctor Dawn Harper, best
known as a presenter of Channel
4’s hit show Embarrassing Bodies,
has long been a loyal supporter of
our work. She caught the cycling
bug when she took part in Action
London to Paris four years ago and
has got on her bike for us every year
since. This year, she rode the Action
DIVA Warwickshire.
“My support is both professional and
personal,” she says. “Two of my three
children were born prematurely
and benefited from excellent care
in Special Care Baby Units. But as a
GP, I am all too aware that not every
parent is as lucky as me and it is only
ongoing research that will change the
outlook for some of this country’s
most vulnerable babies and children.”
What have our other
celebrity supporters
been up to?
Richard Hughes, the drummer
from Keane, rode Castle 100.
Wildlife presenter Hayden Turner
was at the Aberdeen Ladies’ Lunch.
TV presenter Davina McCall
rode Action DIVA Sussex and
will host the Dine with Davina
lunch in November.
Phil Spencer,
presenter of hit TV show
Location, Location, Location
rode Castle 100.
Tony Hadley, former lead singer
of Spandau Ballet, hosted his
annual Golf Classic day.
Crime novelist Peter James
hosted a Golf Day for
Action.
action.org.uk When she signed up for her first
300-mile Action London to Paris
ride, Dawn had only been an
occasional cyclist at best. “I built up
slowly and soon got my confidence
and fitness levels up,” she says.
“Having a goal to aim for really
helped and finishing that first event
was a huge buzz.”
“When I started I didn’t have any
fancy gear or a flashy bike, just an
old mountain bike that had been
covered in cobwebs in my garage
– you really don’t need anything
special to get going. I began riding
to and from work in the week and
doing longer rides with my husband
and friends at weekends.”
Dr Dawn Harper
now has the cycling bug
Ultimate Madness, Polar
Collective and Mt Wolf played
at Action’s Gig in the Garden.
Tweet, tweet. . .
Next month will see lots of cycling
stars attend our glittering
Champions of CycleSport
Dinner, including Chris
Boardman (left) and
Dave Brailsford.
Phil Spencer @PipofftheTV
19 May At the finish of Castle100
– 70 miles through stunning Kent
countryside. Lots £ raised for
@amr_events
Paralympic gold
medal winning
cyclist Neil
Fachie was at
Cocktails and
Conversations
in Edinburgh.
Margaret
Mountford of
The Apprentice
fame spoke at
the Belfast
Ladies’ Lunch.
Davina McCall
Davina McCall @ThisisDavina
11 May 70 k done 30 to go…
Strong like ox. Woop woop
#diva100
Peter James @peterjamesuk
25 Jun Happy birthday
#PaddingtonBear! mascot of kids’
medical charity I support
@actionmedres http://action.org.
uk/paddingtonbear Kirsty McCabe @kirstymccabe
24 Jun Yes it’s #PaddingtonBear’s
birthday tomorrow! Mascot of
children’s charity @actionmedres.
Wish him a happy birthday
touchinglives Autumn/winter 2013
The Oxford Foot Model
Helping children to walk
Action Medical Research has funded numerous projects that have helped change the
lives of children. One project in Oxford has enabled surgeons, doctors and scientists to
develop a way to assess foot deformity to help improve treatment and minimise pain for
children who have problems walking.
For the many thousands of children
with cerebral palsy and other foot
problems, walking can be extremely
painful. This has a major impact on
their lives and can exclude them
from taking part in activities their
friends or schoolmates might enjoy.
Cerebral palsy (CP) affects
movement and posture and is
caused by damage to a baby’s
developing brain, which occurs in
around one in every 400 babies
during pregnancy, birth or infancy.
touchinglives Autumn/winter 2013 Nearly all children with CP (90 per
cent) go on to develop deformities
in their feet which are caused by
unusual forces on the foot during a
child’s early development. There are
also other causes of foot deformity,
such as club foot, that can affect
a child’s ability to walk and some
require surgery.
In the late 1990s there was limited
understanding of foot movement
and how forces are applied on the
skeleton during walking. Doctors
Around
4,000
children a year are
benefiting from
the Oxford Foot
Model
action.org.uk
could only make decisions about
how to treat foot deformities in
children with CP through clinical
observations, so the results and
outcomes were often unpredictable.
Jaren Jai Wicklund / Shutterstock
All foot photos: The Nuffield Orthopaedic Centre, Oxford
Action funded research to help
improve understanding of foot
problems and this established a set
of criteria to help doctors decide
on the best types of treatment. This
has helped reduce pain and improve
walking for children with CP.
In 2001 Action Medical Research
awarded a grant of £140,982 to
Mr Tim Theologis and his research
team at the Nuffield Orthopaedic
Centre in Oxford and the University
of Oxford. Their aim was to develop
a sophisticated new tool to improve
doctors’ understanding of problems
leading to foot abnormalities and
deformity in children with CP. The
team collaborated with the Istituto
Superiore di Sanità in Rome, Italy,
Vicon Motion Systems and Vaquita
Software, who provided hardware
and software for some of the data
collection and analysis.
This led to the discovery of a new
way to analyse movement patterns
within specific parts of the foot,
which became known as the
Oxford Foot Model (OFM).
Around 4,000 children a year are
benefiting from having their foot
movement assessed while
walking with the OFM.
The OFM uses gait analysis
to help doctors make
an assessment. Gait is
the pattern or way
someone walks, so
when this is analysed
it gives doctors
information that
helps them
understand the
cause of possible
abnormalities
that can occur
when walking
and potential
treatments.
action.org.uk The Oxford foot model in use showing markers on legs and feet
For the many
thousands of children
with cerebral palsy
and other foot
problems, walking
can be extremely
painful
To detect muscle activity, electrodes
can also be placed on the surface of
the skin.
The analysis is made using motion
capture technology which is
commonly used to assess how
athletes run, to help them
run more efficiently and
to identify posturerelated or movementrelated problems.
The OFM has led to a greater
knowledge of how foot deformities
occur, including high arch, low arch,
club foot, amputation and when
part of the foot is missing through
inherited conditions or accidents, stiff
feet, feet that are too flexible and
bunions – anything where there’s a
mechanical problem with the foot.
Markers are placed
on various parts of
the feet and legs
and specialised
motion capture
cameras track
the movement
of the feet
and legs while
walking.
Understanding the way feet move
while walking using the OFM rather
than just clinical examinations gives
doctors, surgeons and therapists
information about the various forces
that are occurring across the foot as
well as movement in specific parts
of the feet.
Movement of the whole ankle joint
as well as motion at the mid-foot
and big toe can be measured using
the OFM and adults as well as
children are benefiting from this.
Today, the OFM is now the standard
way doctors make accurate decisions
to help treat people with foot
problems. It is used across the UK
in clinics, hospitals and universities.
Cerebral palsy (CP) affects
movement and posture
touchinglives Autumn/winter 2013
Your money in Action
A step closer to treatment
for children like Grace
Readers of Touching Lives may remember Grace, who featured
in our spring 2010 edition. Grace is now 12 and was diagnosed
with the serious and incurable developmental condition Rett
syndrome when she was just four years old.
Rett syndrome mostly affects young
girls, with symptoms not appearing
until a baby is six to 18 months old.
Grace was the first in her antenatal
class to reach important early
milestones, yet her progress
slowed down when she
was nine months old.
Other babies started to
crawl, walk and talk,
but she didn’t.
When Grace was
nearly two her
parents were
told she had a
chromosome
defect. It was a huge shock when
Grace was finally diagnosed with Rett
syndrome, which meant she might
never walk or speak. Children like
Grace need lifelong 24-hour
care and there is no cure.
Grace is a cheerful
12-year-old but life is still
tough. In the last year
she’s had a number of
seizures during which
she turns blue and
falls to the floor.
She is now
being tested
for epilepsy.
As Grace grows it is getting harder
for her mother to move her.
Gwenda says: “The hospital staff
say we are lucky Grace is still
walking which was music to my ears.
I worked so hard to get her walking
and will do everything in my power
to keep her walking. I love Grace
– she brings immeasurable pleasure
but life is often very stressful and a
constant challenge.”
Action funding awarded in 2009
enabled scientists to carry out
laboratory work that has shown it
might be possible in the future to
treat children like Grace with gene
therapy. Professor Bird says: “More
laboratory work is needed but our
work is a step towards developing a
badly-needed new treatment for this
devastating disorder.”
It’s all in the genes
Dr Manju Kurian from Great
Ormond Street Hospital and the
Institute of Child Health in London
was awarded a Research Training
Fellowship of £135,648 by Action in
2008 to investigate the genetic basis
of a variety of conditions, such as
childhood epilepsy and movement
disorders. Dr Kurian’s grant was
supported by a legacy from
Gordon Walkinshaw. Dr Kurian first became interested
in this area of research while
specialising in paediatric neurology.
touchinglives Autumn/winter 2013 She was dismayed to discover the
lack of medical relief available for
children suffering a range of severe
and disabling symptoms, such
as seizures, blindness and
learning difficulties.
With the Action
funding,
Dr Kurian was
able to find
certain diseasecausing genes
in families with
more than one
child affected by
these neurological
conditions. She found
five genes associated
with early-onset
epilepsy, as well as
a gene that causes a movement
disorder in children that is like
Parkinson’s.
From this, she and her
team have been
able to genetically
diagnose a number
of children who
were previously
not able to get
any answers
about their
conditions.
Dr Kurian’s
work could also
lead to prenatal
testing during future
The DNA molecule, which
pregnancies in families
carries the genetic code for
considered to be at risk.
all life on Earth
action.org.uk
Pasieka / Science Photo Library
Research funded by Action has
discovered some of the genes that
can cause devastating inherited brain
diseases in children that lead
to disability and even death.
Wendy’s gift can bring hope
for children
We are delighted that
long-standing supporter
Wendy Parker has
remembered Action with a
gift in her will. Wendy, who
lived in Leeds, died in April
2013, generously leaving us
over £660,000 – one of the
largest legacies ever left to
the charity.
Wendy’s association with Action
was long and varied and included
an opportunity for her to see our
work up close when her brother
Colin, an eminent dental surgeon,
was awarded a research grant in
1994. The aim of Colin’s project
was to produce a mouth-operated
switch for severely physically disabled
people to operate environmental
controllers and computers.
We are extremely grateful for their
generosity in remembering Action.
If you are making or updating your
will, please consider including a gift
to Action Medical Research. For
more information or a confidential
chat, call Jane Tarrant on
01403 327414 or email her at
jtarrant@action.org.uk. You can also
read more about leaving a legacy in
our leaflet on our website:
action.org.uk/legacy
Other recent legacies have
included shares in the
estates of Joan Horrocks
of Kirkudbright, Patricia
Worton of Upminster,
Irene Harling of
Llandudno, June Moore
of Aylesbury, and gifts
from Louise Grover of
Diss, Lady Martin Fitzalan
Howard of York, and
Jean McBoyle of Huntley,
Aberdeenshire.
Arakelyan Andrey / Shutterstock
When Colin died prematurely in
1997, Wendy and his friend Diane
Saxon established an Action fund
in his memory. The Colin Bramley
Parker Memorial Fund supported
a project investigating the effects of
pre-surgical orthodontics on feeding
and speech outcomes in children
with cleft lip and/or palate, which
would have been of great interest
to Colin.
Wendy’s legacy gift will help fund
a number of research projects that
could lead to life-changing treatments
for babies and children. Gifts in wills
are vital to our ability to fund the
very best medical research and more
gifts like these would enable us to do
so much more – we are currently
only able to fund around half the
children’s research recommended to
us by our panel of expert scientists.
Wendy’s gift is exceptional but you
don’t have to be wealthy to leave a
legacy. We are extremely grateful for
all gifts, whatever their size, and each
gift we receive is recorded in our
Book of Remembrance.
action.org.uk touchinglives Autumn/winter 2013
“She’s such a
lively spirit
and is very
brave”
touchinglives Spring/summer 2013 Helping
Emma
From the moment Emma
Thornton was born, she
loved being active. As an
agile baby and toddler she
excelled in climbing, was
well coordinated and as she
got older loved running,
swimming and trampolining.
Tragically, at six years old she
was diagnosed with Perthes’
disease – a painful illness
affecting the hip joint that
brought an end to her love
of sports. Read here how she
and her family have coped.
to live
without
pain
Today, Emma is a lively, gregarious
and strong-willed 11-year-old.
However, the last few years have
been far from easy.
In April 2008, when Emma was six,
her elder sister Katie came running
downstairs saying her sister was
crying and couldn’t stand up.
“I thought she had just pulled
a muscle in her left leg while
trampolining or playing. I helped
her up and she just carried on,”
recalls her mum Theresa.
Ben Rector
Four weeks later Emma was still
favouring her right leg, so her
parents took her to their GP who
referred her to the hospital children’s
clinic. X-rays showed that Emma’s
left hip joint gap was bigger than
on the right. “The consultant ran
through a list of possible reasons.
He mentioned Perthes’ disease but
assured us that most likely it wasn’t,”
says Theresa.
Perthes’ disease affects boys more
often than girls. It is usually diagnosed
touchinglives Autumn/winter 2013
Unfortunately no diagnosis was
made following Emma’s initial
hospital visit, so Theresa, an
ex-scientist, set about her own
research looking for answers. Having
read more about Perthes’ disease
she asked that Emma’s X-rays be
re-examined. A subsequent MRI scan
confirmed Emma’s diagnosis in July
2008. As her mum had suspected,
Emma has Perthes’.
“It was not a shock as I was
semi-prepared,” says Theresa, “but
I felt very sad for Emma and the
restrictions Perthes’ disease will place
on her and the increasing pain she
will have to go through. She could
face the possibility of having to
go through early hip replacement
surgery in her 40s.”
In the November following her
diagnosis, Emma needed surgery
to release a tendon in her groin
and had to wear a hip brace for
six weeks which was a struggle,
particularly at school. As a six-yearold, Emma wasn’t able to understand
what was happening and became
frustrated and angry when told she
Ben Rector
in children after experiencing hip
pain or a limp. Normally, just one
leg is affected. The hip can become
stiff and walking can become
difficult and painful. Although most
children eventually make a good
recovery, some develop permanent
deformities or arthritis in later life.
could no longer run, trampoline or
climb. “Early on it was really, really
tough. Emma became very sad and
disruptive at school,” says her mum.
Theresa remembers a particularly
devastating time when Emma was
seven. “We were told she had
missed the boat for corrective
surgery, which should have been
undertaken within three months of
her diagnosis. The head of her hip
had grown too big for this surgery
to be effective.”
A series of tests the following year
revealed the extent of Emma’s hip
problems. In January 2010 she had
to have an operation to cut and
re-angle her femur bone. Then,
temporary plates had to be inserted
to help correct the angle of her
hip and further painful surgery was
needed to remove the plates.
Having shown such early promise as
an athlete, Emma now concentrates
more on music. She is learning the
violin, the oboe and the piano,
which is her favourite. Physical
restrictions have been lifted, as
much as pain allows. It is also only
in the last six months that she
has not needed paracetamol
and sometimes ibuprofen on
a daily basis for the pain.
Ben Rector
Her mum says: “She’s such a
lively spirit and is very brave.
Her father and I are very proud
of her. Her dad is very positive
but I am more cautious about
Emma’s future. She has got a lot
more growing to do which may
mean more problems and even
more pain.”
10
touchinglives Autumn/winter 2013 Action Medical Research is
funding Professor Michael Fagan
of the University of Hull to
develop screening guidelines to
help identify children at risk of
getting Perthes’ disease. It’s not
currently possible to predict
which children will develop the
illness, so by the time a child is
diagnosed their thigh bone may
already be damaged. Professor
Fagan is also investigating
possible preventative
treatments.
“The aim of treatment is
to promote the natural
healing process and prevent
any permanent deformity
or disability,” says research
colleague Professor Nicholas
Clarke. “Sometimes all that’s
necessary is to monitor a
child’s progress. Interventions
include physiotherapy, bed
rest, crutches, a plaster cast or
special leg brace and surgery.
Treatment varies depending
on the severity of a child’s
condition, but even bed rest
can be difficult for a child who
is otherwise well.”
Emma’s mum is very supportive
of this work. She says:
“I hope the new
research funded by
Action will make sure
that other children like
Emma don’t end up in
the same boat. If something could’ve
been done for her
earlier, it would’ve
saved a lot of pain,
disappointment and
heartache.”
action.org.uk
New research
The sadness
of stillbirth
Nina McConnell and her husband had been married for 16 years when they had their first son
Jake, following a problem-free pregnancy. They decided to try for another child but Nina had
two miscarriages before falling pregnant again.
Everything seemed to be going really well
and Jake was looking forward to meeting the
baby. He wanted a sister and suggested they
name her Brook.
At 37 weeks Nina went for a routine
check-up but the doctors told her they
had bad news.
“That day will never leave me. It was
Thursday and the shock of suddenly realising
there will be no baby to bring home was
awful,” says Nina.
Nina felt awful that she hadn’t known
anything was wrong. When she was pregnant
with Jake he’d been a big baby who
Many women who suffer a stillbirth say
hadn’t moved much, so she
their baby moved around less than
thought Brook was the same
usual in the hours or days before
or that she was sleeping.
Around
they experienced their tragic
loss. If an expectant mother
Later that year Nina
notices changes in her baby’s
became pregnant again
movement patterns, it’s
and was so worried she
babies are
possible to check whether a
went to see a specialist.
stillborn each
baby is OK by monitoring its
Ryan was induced early at
year in the
heart rate and performing an
36 weeks but was a healthy
UK
ultrasound scan. However, it’s
9lb 5oz. He celebrates his
not yet possible to predict whether
fourth birthday this year, while
that baby will stay healthy.
his brother Jake will be 10.
4,000
Nina says: “We have been blessed with our
sons but will never forget Brook and really
hope the work that Action Medical Research
is funding will help stop other families going
through what we went through.”
Action is funding research by Dr Lucy Higgins
in Manchester to investigate the potential of
two tests: one that analyses a mother’s blood
and another that uses ultrasound scans to
check the health of the placenta.
Around 4,000 babies are stillborn each year
in the UK. Stillbirth occurs when a baby of
24 weeks or more gestation is born with
no signs of life.
It is hoped these tests will help predict
which babies are most at risk during
pregnancy of being stillborn so that they
can get help earlier.
action.org.uk Chris Neely / Modofoto
They decided to use the name that Jake had
given his sister to help make sure he was
involved and understood. Brook was stillborn
on the Friday at 7pm. They hugged her until
9pm, then held a funeral for her on the
Sunday.
The McConnell family
“That
day will
never
leave me”
touchinglives Autumn/winter 2013
11
New research
NIBSC / Science Photo Library
Bacterial meningitis
Coloured scan of
E.coli bacteria
Bacterial meningitis is a medical
emergency that can kill a vulnerable
newborn baby in less than four
hours. One in 10 babies who
contract the disease will die, and
around half of survivors develop
some sort of disability by the age
of five, including cerebral palsy,
epilepsy and learning disabilities.
increased slightly, but the frequency and
severity of the illness remains about the
same. “A thousand cases a year may not
seem very much,” says Professor Taylor, “but
that’s precisely why bacterial meningitis has
not had the medical attention it deserves
and has fallen through the cracks.”
Babies with bacterial meningitis get ill very
quickly. They might refuse feeds and vomit,
struggle to breathe, develop a fever, suffer
convulsions or go into a coma. The disease is
incredibly distressing for the parents as well
as the baby, so Action is funding research into
how this terrible illness could be prevented.
Most people have E.coli in their gut without
getting ill, thanks to a protective layer of
mucus that stops the bacteria from entering
the blood. But in newborn babies the E.coli
bacteria block the production of a protein
called Tff2 which is used to make the
protective mucus layer, so babies are then
vulnerable to disease.
Around 16 per cent of cases of bacterial
meningitis affecting babies are caused by the
E.coli bacterium, which colonises a baby’s gut
and enters the bloodstream.
Professor Peter Taylor is based at the School
Action funding is enabling Professor Taylor
of Pharmacy at University College London
to look at whether this protein could
where he is using his knowledge and
be developed as a treatment. He
experience of bacteria and infections
believes this would speed up the
to help newborn babies. He says:
formation of the protective
“With a devastating disease
mucus layer in a baby’s gut
such as bacterial meningitis, it’s
and stop the E.coli bacteria
not enough to try and cure
from entering a baby’s blood.
it, we need to prevent the
babies each year in
disease from taking hold in
the UK develop
It is still early days in the
the first place.”
bacterial
project, but the results so
1,000
Around 1,000 babies each
year in the UK develop bacterial
meningitis. Survival rates have
12
touchinglives Autumn/winter 2013 meningitis
far look positive. If this project
is successful, clinical trials
could follow.
Professor Peter Taylor
“With a
devastating
disease
such as
bacterial
meningitis,
it’s not
enough to
try and cure
it, we need
to prevent
the disease
from taking
hold in the
first place”
action.org.uk
New research
Help for babies
with heart problems
such as bleeding or clot formation.
The size of the stent could also be
increased throughout the child’s
lifetime, meaning they could grow
with the child, which isn’t possible at
the moment.”
If an adult has a heart defect, this
can usually be treated with a stent
– a small tube inserted into a blood
vessel. Stents help to keep blood
flowing and prevent weak blood
vessels from bursting.
one in every
150
babies
born in
the UK has a
heart defect
It is hoped the new stents could stop
some children from needing open heart
surgery, reduce the risks of surgery and
speed up recovery times.
When a baby is born with a heart defect
– known as congenital heart disease – a
stent can be risky, as they can cause a blood
clot or tear a vessel. Also, the stent doesn’t
grow as the baby grows and its blood vessels
get bigger.
Blood platelets can
move more freely once
the stent is fitted within
the blood vessel
CLIPAREA / Custom media / Shutterstock
Action funding is enabling scientists to
develop a new type of stent especially for
babies and children with congenital heart
disease. Lead researcher Professor Alexander
Seifalian from University College London
says: “We hope our new stents will help
overcome some important disadvantages of
existing devices. For example, we are coating
the new stents with a special material that’s
designed to lower the risk of complications,
Around
Around one in every 100 children in the UK
is diagnosed as having an autistic spectrum
condition (ASC), which is a lifelong condition
involving problems with communication and
social interaction. ASCs can affect children
in various ways, but every child with an ASC
will struggle to make sense of the world and
relate to people, including family and friends.
This can be very isolating.
ASCs are usually diagnosed when a child is
around two years old but there is no single
way to medically test for the condition.
Instead, diagnosis involves observing the
child for a while so that information can be
gathered from the parents, teachers, speech
and language therapists and doctors. This can
take time and sometimes opinions on the
child differ, which is distressing for the families.
action.org.uk David Pirvu / Shutterstock
Autism spectrum
conditions
Scientists funded by Action are developing
an exciting new way to diagnose ASCs by
assessing how a child’s brain waves interact
with each other. Around 40 children aged
three and four are taking part in a pilot study.
It is hoped this research will lead to a quicker
and easier way to diagnose ASC, and enable
families to get the support they need.
Every child with an ASC
will struggle to make
sense of the world and
relate to people
touchinglives Autumn/winter 2013
13
Fundraising news
Companies take Action
We are delighted to be one of
five charities who benefited from
the amazing support of Marks &
Spencer (M&S) staff and customers
in the summer. The M&S Charity
Challenge kicked off in style back
in June with Arc to Arch their Paris
to London cycling challenge. This
was followed by the breathtaking
Bike 24 Challenge, which saw over
1,400 M&S staff take to the track
at Rockingham to cycle 24 hours in
teams of four braving the wind and
rain. There was also a month of
in-store fundraising. It is hoped all
three activities will raise £1 million
for the five charities.
One Stop stores across the country
have raised around £60,000 for
the charity in the last two years
by placing collection tins on their
Marks and Spencer
Action is proud to be working with
some fantastic organisations who
have been getting active to help save
and change children’s lives.
Bike 24 saw over 1,400 M&S staff take to the track
counters encouraging customers
to give their spare change. Many
stores also held fun days with extra
fundraising activities including raffles,
fancy dress and visits by our charity
mascot Paddington Bear.
The Arun Group, a chain of five
estate agents in the south east, has
been supporting Action for four
years through events raising well
over £50,000. This year staff from
over 90 offices donned their lycra,
wetsuits and trainers to ride, swim
and run in five different events for
the charity. Even those not taking
part in any activities have been
fundraising for Action.
We are also delighted to welcome
a few more companies who have
chosen us as their charity partner:
sportpursuit.com and WA Ellis estate
agents in London, who entered four
teams into the South Downs Way
overnight PLOD walk.
Thanks to everyone for going the
extra mile to help sick and disabled
babies and children.
Paddington Bear
Paddington Bear has been
involved with the charity for over
36 years and continues to help in
so many ways. Fans of our furry
mascot can now download a fun
new app and buy a personalised
Paddington T-shirt to help raise
funds for Action. Paddington fans
can choose from five designs,
along with a message and a
photo of themselves, using the
innovative T-Shirt Booth app on
a computer or mobile phone.
Beat the clock
Think you’ve ticked off the box
marked Action London to Paris?
Think again.
New for 2014 we’re launching an
exciting new Action London to Paris
adventure – our 24-hour challenge.
Specifically designed for confident
night riders who can average at least
15mph, you need to ask yourself if
you have what it takes? If so, solo
riders and teams of two are invited
to take on this endurance challenge,
cycling around 280 miles in 24 hours.
Stamina, determination and pure
strength will take you to the finish
line and the greatest feeling of
your cycling life. For details, call
01403 210406 or see:
action.org.uk/l2p24hour
T-Shirt Booth launches early
Autumn (see action.org.uk) so
get your orders in for Christmas!
PADDINGTON BEAR™ © Paddington and Company Limited 2013. Paddington Bear™, Paddington™ and PB™ are trademarks of Paddington and Company Ltd. Licensed by Copyrights Group www.paddingtonbear.com
14
touchinglives Autumn/winter 2013 action.org.uk
Challenge events 2014
Cycling
Prudential Ride
London-Surrey 100 10 August
RIDE100 series
“I’d definitely come
back to ride the
Trossachs. The route
and scenery were
stunning. Awesome!
Bringing friends
next time!”
Bath 100 13 April
Peterborough 100 13 April
Warwickshire 100
Stratford upon Avon 27 April
Action DIVA Sussex
Uckfield 11 May
Suffolk Sunrise 100
Brandeston (nr Woodbridge) 11 May
Running
Adidas Silverstone Half
Marathon 2 March
Virgin London Marathon
13 April
BUPA London 10,000 26 May
BUPA Great North Run
September (Date TBC)
Geoff Logan
At Action Medical Research, we
offer some incredible events
whatever your ambitions,
sporting ability or location. You
will receive excellent support
before and during your event.
With every mile walked, run
or cycled you will be helping
to fund research to save and
change children’s lives.
Tweet, tweet. . .
Castle Ride 100 Tonbridge 18 May
Trossachs Ton Stirling 15 June
Chiltern Challenge 100 22 June
Surrey 100 13 July
Glasgow 100 10 August
Bucks 100 14 August
York 100 17 August
Action 100 Bristol 24 August
Essex 100 Halstead 31 August
Cycle tours
@SarahBarker Back in England!
What an amazing trip. Feel so
privileged to have taken part
#l2p @amr_events
@katya Great cause, great effort,
40mile hike 5 teams. Started at
midnight for @actionmedres
@jonmundy #AMRL2P has been
the ride of a lifetime, thanks to
@amr_events and @DiscoverAd
for their flawless organisation
@PaulStruthers What an
awesome experience.Your
organisation was brilliant.
You guys really know how to
stage a huge event.
action.org.uk Action London to Paris
(Route 1, 2 and 3) 23–27 July
Action London to Paris
24 hour 25–27 July
Action London to Paris
(Route 1only) 10 –14 September
Team events
Race the Sun
Brecon Beacons 28 June
Three Peaks Challenge 5–6 July
Race the Sun
Lake District 30 August
PLOD overnight treks
Cotswold Way 6 June
Mourne Mountains, N.Ireland
13 June
South Downs Way 27 June
Trossachs, Scotland 22 August
Rutland Round (Date TBC)
You can register for an event on
our website, give us a call or send
an email:
action.org.uk/get_involved
T 01403 210406
E events@action.org.uk
touchinglives Autumn/winter 2013
15
Exclusive Christmas cards
Christmas eve
Away in a manger
Six geese a-laying
Help raise funds for Action this Christmas
with our new cards. Make your friends and
family happy this Christmas by sending them
one of our new and exclusive Christmas cards.
charity to be able to sell Christmas cards with ALL the
proceeds going to the charity – with no costs to us at all.
Every penny raised from the sale of this 2013 range will
go directly to helping vulnerable babies and children.
This is because we’ve been able to secure sponsorship
for every aspect of producing this new range, from the
designs to the card used, the envelopes, the printing and
even the cellophane bags.
These new cards are all down to Lynn Tait, a supporter of
our Southend-on-Sea committee and a gallery owner in
Leigh-on-Sea. She had a flash of inspiration she calls her
“light bulb moment” and wanted Action to be the first
Action is grateful to the artists at The Ladder Club who
designed the cards, as well as our generous sponsors:
Sherwood Press, G. F. Smith, Yorkshire Envelopes, The
Imaging Centre, Progressive Greetings and P. G. Live and,
in particular, to Lynn Tait from the Lynn Tait Gallery for
making this possible.
The cards are now available to view and buy on our
website at: action.org.uk/xmas
They cost £3.50 per pack of five cards with red
envelopes.
Order forms are also available from Chris Tanner on
01403 210406 or email: ctanner@action.org.uk
Dancing snowflakes
Christmas tree
Rudolph
Jingle belles rock
Santa swaps hooves
for wheels!
Fairy friends
Christmas shopping
Silent night, holy night
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touchinglives Autumn/winter 2013 Dear Santa
action.org.uk