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INSIDE: MEDICINE MATTERS BENEFITS FEEDBACK NEWS BRANCHES AROUND THE REGIONS
Summer 2014
Myaware South Somerset and West Dorset win
John Newsom-Davis Shield
A
t a Strawberry Tea held on Saturday 7th June at the home of John Mason, myaware South
Somerset and West Dorset Group were delighted to be presented with the John Newsom
Davis Shield for their outstanding contributions to myaware through care and support, raising
awareness and valuable contributions through fundraising.
Congratulations to the group on winning the shield!
Free Prescriptions
D
id you know that you can get all your NHS prescriptions free if you have a valid
medical exemption certificate because you have myasthenia.
To obtain a medical exemption certificate ask for application form FP92A, at your
doctor’s surgery. You need to fill in parts 1 and 2 and your doctor (or an authorised member
of the practice staff) will sign to confirm the information you’ve given is correct.
Certificates are valid for five years before they need to be renewed.
Tel: 01332 290219 Web: www.myaware.org Email: [email protected]
SUPPORTING PEOPLE AFFECTED BY MYASTHENIA
EDITORIAL
2
An update from
Ruth Ingledew myaware CEO
H
uge thanks to those of you who took the
time to feed back on the changes to our
name and look. Your response has been very
positive, especially to the new web site – do
keep visiting us at www.myaware.org as there
are more developments to come. Thank you
to all of those who have ordered our new
mugs, t-shirts, wrist bands, pens, car stickers
and postcards – if you have yet to see these
please ask you Regional Organiser and from
next month they will be available to order from
the web site. We hope you are enjoying the
myaware launch tea parties – you will find more
about these in this edition of the newsletter.
As you may know there are big changes
underway in the NHS. We are working hard to
make sure that the NHS understands what people
with myasthenia need and are very pleased that
some members are actively lobbying locally. Our
key aims for people with myasthenia are:
• The care of a named neurologist and regular
review (at least once a year) for everyone
with a diagnosis of myasthenia who is
receiving treatment
• The support of a specialist myasthenia nurse
who can provide medical advice and help
with access to other medical services
• More GP training to help with speedier
diagnosis and improved on-going care
With NHS funding under huge pressure our
aim is to ensure that myasthenia services are not
forgotten, and to show that regular medical care
and support are vital to keeping people well
and avoiding unnecessary hospital admissions.
Many of you responded to our survey on regional
variations in care and we are using this information
to support our lobbying work.
If any member is interested to know more,
would like to get involved locally or has any
information that would help with
campaigning, please do get in
touch with me.
We are also involved in
promoting the implementation
of the UK Rare Disease Plan and
have been invited to sit on the
UK Rare Disease Patient Forum.
Wales seems to be making
good progress with this and we
fed into their consultation, in
Scotland the national plan has
just been published. In England
we have some concerns about
the very slow progress being
made by the NHS in meeting
their commitment to deliver
a Rare Disease strategy, and
Northern Ireland has yet to publish anything.
myaware will continue to lobby in this area.
O
n the research front Dr Paul Maddison is about to commence work
on the myaware funded Late Onset Myasthenia Gravis project at
Nottingham, in collaboration with Birmingham and Oxford. He will be
working with Dr Girija Sadalge. We wish them both every success with
this three year project and look forward to finding out more as the work
progresses.
If you would like to know more, or are able to contribute to the
£115,000 cost of this project, please get in touch or send any donations
to Derby.
With best wishes for a healthy and happy summer, Ruth Ingledew, myaware CEO
myaware news Summer 2014
myaware.org
EDITORIAL
3
A Message from Natalie James
Specialist Nurse
T
o all the amazing staff at myaware and all the patients, relatives and
carers out there I would like to say a heart felt thank you for the
kindness and support you have given me in the 4 ½ years I have been the
myasthenia nurse in the London region. I would not have been doing this
job without the initial support and drive from the charity and I want to thank
everyone who worked hard to establish this post. I have certainly learnt a lot
along the way, not only about the conditions you deal with daily but also about how you all cope with
the symptoms. I now have a much greater insight into the impact of neuromuscular diseases and how
health care professionals should be supporting our patients.
HOWEVER……
It is time for me to move on and explore new
avenues within neuromuscular disease; I switched
jobs within UCLH NHS Foundation Trust in June
and therefore no longer the myasthenia nurse.
We are recruiting another nurse and we hope
to have someone in post within the next few
months – there will be someone covering the
NHNN patients, contact details are available from
Head Office Derby. It is important to note that this
nurse is not specialist and therefore I will support
her with any questions or queries she is unable to
manage. I will also support the new permanent
nurse once in post until he / she find their feet.
I wish you all the very best and Thank you!
Natalie James
Myaware Young Generation Weekend
A
re you between 18 and 40 and looking to find out more about myasthenia? Then please join
us at our annual myaware young generation Conference Weekend. This year the Conference
is being held on 27th and 28th September at The Derbyshire Hotel, South Normanton, Derbyshire
– just off Junction 28 of the M1. Speakers will be answering medical questions and can also help
with any enquiries into benefits which you may have. Afterwards a 3 Course Dinner is planned for
Saturday evening – a great chance to meet new people and make new friends.
The event is free to attend and overnight accommodation is available if you need it. Partners
are also most welcome. For more information please contact Sarah Hindley – sarah.hindley@
myaware.org or 01543 327 438. We hope to see you there!
Phase Three Trial of Eculizumab in MG
A
lexion Pharmaceuticals who specialise in medications for ultra-rare diseases are about
to start a phase three trial of Eculizumab in MG. Eculizumab is a humanised monoclonal
antibody that blocks a component of the immune system which in MG may help to prevent
destruction of the neuromuscular junction. The trial will take place in 20 countries, and the
company hopes to recruit two or three patients
from centres in the UK. It will focus on patients who are severely disabled by their MG and who
have failed to respond well to other treatments. This is an is extremely intensive trial with weekly
infusion for the first month and fortnightly
infusions afterwards.
myaware.org Anyone interested in taking part can find out
more by visiting:
http://news.alexionpharma.com/pressrelease/company-news/alexion-initiatesmultinational-registration-trials-eculizumabpotential and going to www.clinicaltrials.gov
and then discussing this further with their own
specialist. myaware news Summer 2014
4
MEDICINE MATTERS
Statins (and other drugs) : are they
bad for Myasthenia and LEMS?
S
tatins remain extremely effective drugs when used to combat elevated cholesterol in those
patients with (or at risk of) cerebrovascular or ischaemic heart disease.
However a recent study
published in the British Medical
Journal (BMJ) on Statins
reported that nearly 20% of
patients may develop side
effects (such as isolated muscle
pain or muscle inflammation),
which leads to their
discontinuation.
This article caused significant
media attention and the article
was subsequently revised by
the BMJ editorial staff. It has
been my current clinical practice
to recommend that there are
no contra-indications to using
Statins in MG and LEMS but
to warn patients to be aware
of a small risk of exacerbation
of their MG or LEMS. However
given the increasing prevalence
of Statin use, especially in those
over 60 years, I thought it would
be useful to review the literature
with respect to the safety of
Statins in MG and LEMS.
There are case reports of
single patients where Statins
are reported to have either
triggered or worsened MG /
LEMS. However more powerful
cohort studies are required to
study this effect further. The first
study of this kind was published
in 2008 by an US group (Oh
et al, 2008) which looked at
patients whose Statin exposure
was recorded over a 30 month
period. Just over 30% were
taking Statins and of these 13%
developed self-limiting muscle
pain whilst in 11% their MG /
LEMS deteriorated following
their introduction. This effect
was observed either relatively
early (within 1-2 weeks) or was
delayed (within 2-4 months).
More recently a UK study that
was presented at a national
meeting looked at patients
(Virgo et al, 2013) and identified
exacerbation (within 4 weeks)
in 25% of their myasthenics
being treated with a Statin.
The mechanism by which this
happens is not clear but it
believed to be independent of
any effect on neurotransmission
at the neuromuscular junction
and more likely reflects an
effect on the immune system.
Given the findings of these two
retrospective studies, further
studies are therefore warranted.
My recommendations remain
that whilst there are still no
definite contraindication to their
use, I would exercise caution
when starting Statins in MG /
LEMS and to stop them if there
was any clear deterioration.
On the topic of non-MG
/ LEMS drugs, I thought this
would a useful time to remind
the readers (and especially
the newly diagnosed amongst
you) about the list of the
medications that can adversely
affect MG / LEMS. This is a
far from an exhaustive list of
every possible drug but should
serve to highlight the key drug
classes that are best avoided
or used with caution. Details of
these can be found at: https://
www.myaware.org/medical/
contraindictaions
Antibiotics:
Long term immunosuppressive
medication predisposes to the
risk intercurrent infections but
certain antibiotics can also
adversely affect MG / LEMS.
The aminoglycoside family
(which includes Gentamycin,
Clindamicin and Amikacin)
can have multiple effects on
neurotransmission and should
definitely be avoided.
myaware news Summer 2014
The macrolide (which includes
Erythromycin), Tetracycline
(which includes Doxycycline) and
fluoroquinolone (which includes
Ciprofloxacin and Levofloxacin)
families can all potentially affect
neurotransmission and should
be used with caution. Although
there are rare reports of
exacerbation with the Penicillin
family these can be considered
safe.
Cardiac drugs:
The calcium channel blockers
(which include Verapamil,
Diltiazem, Nifedipine and
Amlodipine) and Beta blockers
(which include Propanolol,
Atenolol and Sotalol) are used in
the treatment of ischaemic heart
disease and hypertension. Both
can affect neurotransmission
and may exacerbate MG / LEMS
especially in chronic use and
should be used with caution.
Both calcium channel blockers
and beta blockers have also
been reported to induce a drug
mediated myasthenic syndrome
in those without MG / LEMS
that resolves after the drugs
are withdrawn. Lastly certain
anti-arrhythmic agents can have
effects both in the short- and
long-term and close monitoring
is prudent. Blood thinning drugs
(including Aspirin, Clopidrogel
and Warfarin) are considered
safe.
myaware.org
MEDICINE MATTERS
Penicillamine:
Pencillamine which is used
in the treatment of certain
autoimmune disorders can also
induce an immune mediated
myasthenic syndrome with
detectable autoantibodies in
susceptible individuals.
This typically takes between 2
months and 2 years to develop
although complete resolution
occurs following Penicillamine
withdrawal. The drug can
nevertheless be used safely in
MG / LEMS patients.
Corticosteroids:
Whilst corticosteroids are
highly effective treatment for MG
/ LEMS they can also potentially
lead to an acute deterioration
especially if the dose is increased
rapidly. Care should therefore
be taken especially in older
patients with bulbar or respiratory
symptoms. Furthermore
prolonged high doses of
Prednisolone can lead to muscle
weakness independent of their
MG (termed steroid myopathy).
Miscellaneous drugs:
There are reports of certain
anti-epileptics (Phenytoin,
Carbamazepine and Gabapentin),
chemotherapy (Doxorubicin,
Etoposide and Cisplatin), tricyclic
antidepressants, Lithium and
Interferons all exacerbating
MG / LEMS and so caution is
recommended when using these
drugs.
In conclusion the take home
message for all MG / LEMS
patients is to remember that
certain drugs do have the
potential to upset your MG /
LEMS. This is particularly so in
patients with relatively brittle
disease. It is therefore always
prudent to remind doctors
and pharmacists about your
condition and to look out for any
significant deterioration over the
forthcoming weeks and months
if these drugs are used for other
co-existent conditions.
Stuart Viegas Summer 2014
myaware Social & Welfare Service
Guidance on Dealing with Medical Assessments
I
f you are called for a medical assessment by the DWP, for example for a Personal
Independent Payment (PiP) or Employment Support Allowance (ESA), it can be very stressful
and worrying. We hope this simple guide will help.
1. If you feel that medically you
are unable to attend, then you
can ask for a home visit. You
will need to phone the DWP
and request this. I would also
strongly advise that you get a
letter from your GP stating that
due to medical reasons you
cannot be expected to attend.
Then include with the GP
letter, a covering letter to the
DWP asking for the home visit.
Please keep a copy!
2. Always take a third party,
they should not make
comment, but should take
notes of the meeting. This can
be a family member or a friend.
3. When you see the assessor,
politely establish the following
• What is their medical
qualification?
myaware.org • How much specific
knowledge, practical, medical
and general they have with
our condition types. This is
important and their answer
should be noted.
4. If they ask you to carry out a
task, and you feel it will either
cause fatigue now or later, or
you may struggle with it, then
explain this to the assessor.
5. Take myaware information
with you and give to the
assessor at the beginning of
the meeting. You will need
information explaining what
the condition is, we also have a
leaflet designed as a hand out
(available from the social and
welfare service).
Remember the myaware
Social & Welfare Service is
5
there to support you, so if
you are worried and want
information, advice and
guidance contact Steve at:
[email protected]
Steve Bradshaw
Summer 2014
myaware news Summer 2014
6
retirements
Teenager’s Life Transformed by
Ground-Breaking Charity Research
A
teenager who has been reliant on a wheelchair for seven years is able to walk again, thanks
to ground-breaking research funded by the charity.
Jimmy Webster, aged 17
(pictured below), who with
his family has been an active
member of the myware Kids
Group, has a severe form of
congenital myasthenia. This
meant that Jimmy was unable
to stand and sometimes needed
help to breathe. But now
Jimmy, from Cardiff – grandson
of Heywood and Middleton
MP Jim Dobbin – has seen his
life transformed after taking
a ‘miracle drug’ developed
by scientists during research
funded by myaware.
Scientists at the Weatherall
Institute of Molecular Medicine,
University of Oxford, suggested
that Jimmy could trial
Salbutamol, alongside another
drug called pyridostigmine.
Within three days Jimmy could
stand and, two days later, he took
a few steps.
Jimmy said: “I was suddenly
able to stand - it was weird. I
was under the impression that I
would always have this trouble
but I can take 150 steps now.
I am quite proud, amazed and
very grateful to the research
team.”
For years Jimmy struggled
with day-to-day tasks most of
us take for granted, such as
getting out of bed, washing and
getting dressed. He sometimes
needed ventilation to open his
airways because the muscles
would collapse. His eyelids
would droop involuntarily and
he would be unable to hold out
his arms. Jimmy said:
“It was frustrating growing up.
My friends would go off and
I’d be left on my own – they’d
forget about me. I got really
tired of watching other people
play football.”
Before taking the new drug,
Jimmy would not have been
able to go away to university but
he has been offered a place at
the University of Oxford and is
now able to accept it.
His mother, Kerry, said:
“Jimmy’s at an age where his
friends are going away and,
before he started taking the
medication, there was no way
he would have been able to
function on his own. He was
reliant upon care for everything,
even getting dressed.
“Now he is able to do more
and more by himself and he is
really challenging himself. As
a mum, this is what you want. I
can see his life really developing
and flourishing now – it’s so nice
to think that he will get to have
the independent experiences
that people expect to have
at his age. It’s all about hope
- you never expect change to
happen but you hope. It’s a little
miracle.”
Despite the challenges Jimmy
has faced, he has competed in
wheelchair karate for several
years. Since taking Salbutamol
he has won a number of
tournaments, including second
place in the Welsh league
and third place in the Welsh
national wheelchair karate
championships.
myaware news Summer 2014
In people with myasthenia,
the brain tells the muscles to
work but the message fails
to get through. Salbutamol
appears to stabilise the
connection between the nerve
and the muscle. Scientists who
discovered it could have such a
significant impact on myasthenia
symptoms are now looking into
how it may benefit other related
disabling genetic conditions.
Research involves testing how
the drug alters the nerve to
muscle connection.
Professor David Beeson, who
leads the Oxford team and has
been studying the causes of
myasthenia for 30 years, said:
“In Jimmy’s case we got the
combination of drugs just right
and we were very pleased.
Results like these make the work
rewarding.
“Myasthenia is one of the few
genetic muscle diseases where
there are effective treatments
and the work we do can be
transformational in terms of the
quality of daily living.”
myaware.org
MY JOURNEY WITH MYASTHENIA
7
Ronnie Whelan’s Walk 2014
May 30th – June 3rd
M
yaware Ireland’s Patron, Ronnie Whelan and his wife Elaine
were joined by Mrs Brown’s Boys, Danny O’Carroll and
LOVE/HATE’s Laurence Kinlan as well as brave volunteers walking
from Donegal to Galway over 5 days raising awareness for
myasthenia and much needed funds. Photo right shows Laurence
Kinlan, Ronnie Whelan, Clare Foley and Danny O’Carroll.
Ronnie started his challenge
walks in 2010 and has now
clocked up over 500 miles in aid
of the charity.
It was a tough 108 miles –
our rookie celebrities realised
by the end of day one that it
wasn’t going to be a ‘walk in the
park’ as they started to compare
blisters, aches and pains whilst
on the physio couch. But they
were determined to keep going,
and despite blisters, sore ankles
and knees – they kept going
right to the end. We couldn’t be
more proud or grateful simply
because they didn’t find it easy
and they weren’t going to let
down all those out there who
have myasthenia.
We met some fantastic
people along the way who were
happy to help out - put a little
money in a bucket, offer food,
drink or even a bathroom! It
was wonderful to meet so many
members and their families who
took time out to support us and
cheer us along – it made all the
difference
Among our other walkers
were: Tony McGowan joining
us for a 2nd year (whose wife
Sarah has MG); Denise Mc
Causland (who has MG); her
wonderful friend Treasa Tallon;
Mick Delaney of UPS who has
donated his time and myaware’s
Clare Foley pulled on the
walking shoes again and is still
suffering. We also couldn’t have
done it without the support of
Damien Milton, Paul Brennan
and Gary Keating who kept us
safe in the support cars and also
walked part of the way – and
the unsung hero of the walk as
always is Ciaran Keating who
keeps everyone fed, watered
and comfortable.
The final mention goes
to the man who made sure
we all crossed the finish line,
Physiotherapist, Brian McCrystal.
Brian, who donated his time, not
only treated everyone morning,
noon and night (literally) but
walked the majority of the 108
miles and we all are eternally
grateful for his care, attention,
tape, plasters and magic
ointments!
Thanks must also go to
companies who donated time,
goods or services to help make
the walk possible and these
include Skechers, Brodericks
Brothers, Dunnes Stores, Airside
Ford, Lansdowne Sports,
McDonalds, Great Northern
Hotel, Glasshouse Hotel,
McWilliam Park Hotel and Hotel
Meyrick.
We ask that people continue
to help and show your
appreciation by donating,
even a little, to one of the
walkers - details can be found
on our website at myaware.ie/
walk2014
See more photos, videos
and updates via the walk
Facebook Page – facebook.
com/ronniewhelanswalk
Ronnie Whelan’s group arrives
in Sligo
myaware.org Ronnie Whelan’s group arrives
in Galway
myaware news Summer 2014
8
MONOPOLY BOARD CHALLENGE
Supporters out in Force t
Our patron Nick Ross says:
‘’I am delighted with the new branding. As it happens I particularly like the subtitle, Fighting
Myasthenia Together. It is always a struggle to get priority for Cinderella conditions and the new look is
a huge improvement –as is the website which is wonderfully professional!”
It’s not too late to have a Tea Party of your own contact your Regional Organiser or head office for
further information and a FREE party pack.
myaware Hertfordshire Tea Party
Tea Party in Derby with the Deputy Mayor
ly
obvious
rand has
b
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is
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this so fa
work on
myaware Cake Flags –
Don’t those cakes look delicious!
myaware merchandise on show at Leeds
‘I have n
o doubt
that this
rebrand
will work
for us,
just as it
has for o
ther
charities
such as S
COPE –
if they ca
n do it ,
we can!’
Glasgow Tea Party – These cakes are
great!
“Tea & Cakes, everyone is happy in
Edinburgh!”
hat it
‘I think t
uch more
s look m
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myaware news Summer 2014
myaware.org
POEMS
9
to Launch New Branding
myaware Wiltshire Group members
enjoying afternoon tea to celebrate
the myaware launch
Tea Party chat at Leeds
myaware South Essex Group gearing up
to entertain the masses in Rayleigh at
their tea party on 21st June
new
‘I love the
r and
a lot softe
name it’s
the
g
in
h
catc
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inded
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always
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logo. You
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brill.’
w it looks
charity no
myaware Birmingham group photo
‘We like
the new
image
it is very
impressiv
e,
hopefull
y it will b
e easily
recognis
ed and m
ake
people “
aware”’
myaware Croydon – Pat (treasurer,
left) and Shirley (Chair, right) in full
preparation for their superb tea party
on 21st June, along with lovely cakes all
made by Pat.
Tea Party at Grimsby – Kev & Gail Smith
handing over a cheque for £250 from
the company Kev works for (FR Aviation
Services Ltd) and collecting tins which
contained £118.05 – donations from
when Kev had his chest waxed!
s on the
tulation
‘Congra
r the
nding fo
new bra
really
it looks
l,
Charity,
fessiona
and pro
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m
ke it!’
I really li
myaware.org myaware news Summer 2014
10 OBITUARIES
Obituaries
Eric Chambers
Myaware
Woking is
saddened to
report the
passing of Eric
Chambers, aged
84 earlier this
year. Eric was a
regular member
and supporter of
the local group
and always kept
the members
entertained with stories from his interesting
and difficult early life.
In fact on reaching retirement, Eric at last
got round to putting down his memories
from his childhood and youth in a book
entitled “No Bed For Me” an honest and
moving account of what he called a loveless
childhood, and dealing with the challenges
and joys of life!
Eric will be sadly missed by all his family
and friends and I am honoured to have
received a signed copy of his memoirs when
it was first published.
Steve Saunders, Regional Organiser
Alan Willington
Myaware Brighouse is saddened to loose
one of its most supporting members Alan
Willington. Alan died on the 13th April 2014
after a period of time in hospital following a
hip operation from a non MG related incident.
Alan had only been diagnosed with MG in
2010 and had been a member of our group
from then during which time he supported
the organisation to his utmost ability. His son
had also supported us by running a marathon
on our behalf in support of his father.
We all wish Sue Willington Alan’s wife our
best wishes and hope that she will still keep
in touch with us all. They were both keen
walkers and Alan was a dedicated singer in
his local male vice choir.
Following Alan’s funeral, donations have
been received totaling £744.50 from the
church funeral service collection at All Saints
Church, Elland and the family’s personal
donations.
Richard Mitchell, Brighouse Group Chair
Mary Glass
We were saddened to hear recently that
our friend Mary Glass had died. She and
her late husband Jimmy made contact with
South Manchester branch in 2004 when Mary
was learning to live with myasthenia. Sadly
myasthenia deprived her of the joy of singing
as her fine voice lost its strength. She and
Jimmy were very supportive of the charity
and lifts to the meetings were gratefully
received. This meant they could be at the
meetings regularly until prevented by ill
health. Our thoughts are with their family and
friends.
Sarah Sanders, Regional Organiser
myaware news Summer 2014
myaware.org
FEEDBACK 11
Dear myaware,
f a cheque for
Just about to send of
myaware’s share
£250 to you which is
my book `Mutiny
of the proceeds from
ars challenge is
in my Body`. This ye
st one in March and
Duathlons. Did my fir
ril. There is life after
the second one in Ap
o shows me and
Lambert Eaton. Phot
Bob at the finish
my wonderful hubby
Keep up the good
of our first duathlon.
e cheque soon.
work. You`ll receive th
Best Wishes
Debbie Pentland
Dear Editor,
I help with teas at our local
church on Sunday mornings.
The money raised goes
towards flowers etc. for the
parish, but we make more than
is needed.
All of the people who help
take it in turns to donate
money to their personal charity.
It has now come to my turn,
and myaware is my chosen
charity so I enclose a cheque
for £100.
Yours sincerely
Sylvia Eastwood
myaware.org Feedback
Dear myaware,
The Jubilee Sailing
Trust is a ‘disability
aware’
Charity. Since their
first custom-built sh
ip, the
Lord Nelson, specia
lly built to accomm
od
ate
both able-bodied an
d disabled people
altogether in the sa
me crew, it has chan
ged
the lives of so man
y people....’Sharing
the
challenge’ is their m
otto. It doesn’t mat
ter one
bit if you are not as
strong or capable as
some,
you all fit in with th
e everyday running
an
d
sailing the ship. Th
ere are no passenge
rs!
They have a very lo
ng list of all the disa
bilities
imaginable catered
for, but as yet they
have
not added to that,
myasthenia. As I su
ffe
r from
this (amongst lots of
other ailments you
get
with old age!) I can
vouch for the fact th
at
my
disability, and poor
mobility have not le
ssened
one iota my enjoym
ent and wonderful
fe
eling
of achievement I ha
ve found sailing on
either of
the two purpose bu
ilt ships Lord Nelson or Tena
cious.
For further informat
ion go
to www.jst.org.uk
Happy Sailing to al
l!
Regards
Sailor Betty
Dear Editor,
On 2nd March 2014 I ran
the Bath Half Marathon to
raise money for myaware.
Despite a cold damp day I
completed the challenge
with my family and friends
supporting me all the
way. I managed to raise
£420 which I enclose for
this worthwhile charity
which is very close to my
heart with my mother
and grandmother having
MG.
Yours sincerely
Georgina Stewart
myaware news Summer 2014
12 RE-BRAND
myaware news Summer 2014
myaware.org
BRANCHES 13
Group support in your area
myaware Cumbria
We would like to thank Lindsay Walker who took
part in the BT Rock ‘n’ Roll Marathon in Liverpool
to raise funds for the myaware Cumbria. Lindsay
finished the marathon in a time of 03.49.12 and
was the 81st woman to finish!
Lindsay’s next run is
the San Francisco Half
Marathon on 27th July
where she will be again
raising sponsorship for
myaware Cumbria and
proudly wearing her
myaware running vest.
If you would like to
sponsor Lindsay please
contact me, Pat Newlove,
myaware Cumbria
Treasurer on 01946
861378 or email patricia.
[email protected]
myaware Lothian
We had a very successful meeting and AGM on
Saturday, 12th April, 2014. There was a good
turnout and we were pleased to welcome
along several new members. An enjoyable time
and scrumptious home baking was had by all,
catching up with old friends and making new
friends. Our hard working Regional Organiser
Lynn Stewart very informatively updated us on
past events including Rare Disease Day, Life With
Art Exhibition and the latest news from Derby.
Our last meeting happily raised £100 benefiting
myaware. We find our meetings are invaluable
to enable people with myasthenia not to feel
isolated and alone and an opportunity to share
experiences. We wish all our friends at myaware
Lothian a good summer and take care.
myaware Strathclyde
My name is Jack Fleming, and have been a
member of myaware Strathclyde for the last
five years. Three years as secretary, a year as
Vice Chair, and this year on 10th May at the
AGM was voted in to the post of Chair.
The reason I am involved in myaware is because
my wife Anne has myasthenia, and I know how
demanding this condition can be, both from the
myaware.org sufferer’s point of view, and for the carer. I was
delighted at the AGM to take up the challenge as
Chair of the group.
I knew when I took over from Robert Cowan
that I would have a hard act to follow. Robert
joined the Strathclyde Branch in 1992, and
attended it through thick and thin, especially
between the years 1999 and 2003 when the
membership dropped to a very low number. At
this point Alasdair Nimmo asked Robert if he
would be Chair for, maybe, six months! The six
months stretched through to 2014. During this
time Robert attended conferences on the Rare
Diseases Days and worked hard in fund raising.
The result was, when I took over the reins, we
have a regular attendance of 30 - 35 members
at our meetings. I am very fortunate that Robert
has agreed to be my Vice Chair, and as I say, if he
supplies the brains, I’ll supply the legs, to keep
things going. I am also very lucky that the Old
Brigade of David Gray, Treasurer, and Alex Eadie,
Secretary are there to back me up.
It was heartening at my first meeting to see
new members and old, and I promise to try and
keep the fund raising going, and increase the
attendancies at the meetings.
Jack Fleming, myaware Strathclyde Chair
myaware Brighouse
Get ready to ABSEIL!
Myaware Brighouse
invites you to take part
in a Charity Abseil on
Sunday 12th October
2014 1.00pm – 5.00pm at
ROKT in Brighouse
http://www.rokt.co.uk/wp/corporate-groups/
For further details and to enter please contact
Richard Mitchell, myaware Brighouse Chair
Tel: 01484 714230
Email: [email protected]
myaware Somerset and West Dorset
Once again my Strawberry Tea was a great
success. This was my 9th Strawberry Tea and we
raised a fantastic £668.20. We look forward to
holding the event again next year.
John Mason, myaware Somerset & West
Dorset Chair
myaware news Summer 2014
14 AROUND THE REGIONS
Around the regions
_________________________________________________________________________________________
Midlands
North
Sarah Hindley
Linda McDonald
Tel: 07523 096930
Tel: 01325 308180
[email protected]
[email protected]
Lots has been happening in the Midlands - thank
you to Bill and myaware Birmingham and District
for their hard work in fundraising for a Cough Assist
Machine for Alexandra Hospital, Redditch. The
total now stands at over £2,000 – special thanks to
Warwickshire and Worcestershire Lodges and The
Grimmitt Trust.
Myaware Warwickshire and Coventry have also
been busy raising funds for a Cough Assist Machine
for University Hospital, Coventry – the total raised
is £750 - thank you to the Warwickshire Mark
Benevolent Fund.
If you would like to donate to either Cough Assist
Machine, please let me know.
Myaware Lincolnshire held their AGM in April at
the Redwood Restaurant, Crowders Garden Centre
– a lovely photo of the group is below:
Some well deserved Thank You’s.
Lesley Ellerby, Ashley Wright (in photo) and
Becky and Gavin Watts who took part in the
Sheffield Half Marathon and raised £1,253.
Steve Dodds who took part in the Edinburgh
Marathon and raised £747.20. Joe Morton and
Andy McCue in
Leeds who took part
in the Leeds Half
Marathon and raised
£140 and £100.
Sandy Brotherhood,
Lorraine Atkins and
Neil Cowles who
took part in the Tyne
Bridge Zip Slide
and who are still
collecting in their
sponsor money but
have raised £340 so
far.
Special thanks to
Holly Parkin from
West Yorkshire who organised a Charity Night in
Batley. Holly was diagnosed with MG last year and
following the help she received from myaware
wanted to do something to say thank you. Her
partner, Sam Newman, ran the London Marathon
with his friend Mark Edward Carter, and together
Holly, Sam and Mark raised £3,950.
It is not too late to take part in the 24.5 mile
Yorkshire Three Peaks Challenge on Friday
15th August. Entry fee is just £25 and includes
free training walks. Enter online at http://www.
kutaoutdoors.co.uk/charity-pages/myastheniagravis-association and we still have one place in the
Leeds 10k and 3 places in the York 10k.
Thank you to all who came to the Tea Party at the
Life with Art event in Leeds on 9th May and we look
forward to seeing people at our Life with Art events
in Grimsby, Sheffield and Ripon – see the website or
contact Linda for dates and venues.
Thanks to all who attended the North Regional
Conference on 1st June and thanks to the Big
Lottery for funding this and also the Yorkshire
Regional Conference to be held on Sunday 28th
September at the York Marriott Hotel.
Franklands have carried on their fantastic
fundraising with their May Food Fest and
Burntwood-based Motivair have donated funds
to myaware every time a customer completes a
feedback survey - thank you.
In June we were fortunate enough to receive
a £50 donation from both the Rotary Club of
Coventry North and the Rotary Club of Brewood &
District. This all helps to fulfil our aims of Research,
Care and Education and ensure that those with
myasthenia get the help and support they need –
thank you.
Thanks also to organisations who have donated
raffle prizes: Fairlawns Hotel and Spa, Debenhams
Derby, West Bromwich Albion FC, Wolverhampton
Wanderers FC, Showcase Cinema de Lux Derby,
Morrisons Derby and Denby Visitor Centre.
myaware news Summer 2014
myaware.org
AROUND THE REGIONS 15
North West & Wales
Sarah Sanders
Tel: 07804 775554
[email protected]
Huge thank you
to Dan Atkinson for
recently taking part
in the Chester Half
marathon and the
Bolton Duathlon.
‘A few months ago
I began training for
some endurance events
I would complete
for myaware. It was
my witnessing of
the physical effects
myasthenia can have on
an individual and the family around them that made
me want to support this cause. I wanted to try and
help raise awareness for people that are struggling
to get a clear diagnosis or finding treatment, and
people that need support living with the disease
I do these events in loving memory of Jack Hindle,
South West
Rita Goldthorp
Tel: 01980 626062
[email protected]
Do you know what support is available to you
locally?
Your local group is a great support network.
They usually meet every two months and you will
be able to find out what people are up to, how the
members manage their myasthenia, who they see,
what services they find helpful and have a cup of tea
and general chat at the same time! Get details of
your local group either from Derby or from Rita.
Have you had an assessment from your local social
services occupational therapist? This is very useful as
they can help you with any benefits claims you may
be making (our social and welfare advisor can guide
you through the paperwork but the occupational
therapist can write a reference for you) they can
look around your home and assess where you need
help and support and can often refer you for work
to be done by the social services department free of
charge or subsidised. Support will vary from county
myaware.org the passion and enthusiasm he had for life motivates
me through training and has carried me over the
finish line at the two events I have completed this
year. Although the disease affected him physically,
he never let it affect his outlook on life and I hope to
share that courage and inspiration with others.
If you haven’t already been
to see our national LifewithArt
exhibition, please come along
to one of our open days on the
following dates. The exhibition
consists of 50 pieces of art work
which has been created by people
with Myasthenia, their relatives and
carers.
Friday 8th August – Portcullis House, 21
Cowbridge Road East, Cardiff, CF11 9SR.
Thursday 14th August – Birchen House,
Birkenhead, Wirral.
Merseyside
Lancashire
South Wales
North Manchester
Bolton
2nd August
20th August
13th September
18th September
25th September
to county so why not ask your local department to
arrange a visit – just phone your adult social services
care department.
If you are not already registered as disabled it
is worth considering doing this. There are many
benefits including a possible reduction in your
council tax, help and support with your employment
and a free bus pass for the under 60’s if you cannot
drive. Ring your local adult social services team.
If you have a local Independent Living Centre
in your county then it is worth going along to see
the equipment they have on show to see if there
is anything that can help you with your day to day
living. The staff are usually qualified occupational
therapists and they can advise on the best items to
help you together with where they can be purchased
locally. They will often have a list of second hand
scooters and stair lifts available locally as well. If you
cannot find details of your local centre then ring Rita
who will try to find one near to you.
Do you have a Radar key? This is the key that
will open those locked disabled toilets all over the
country. They cost around £3 and you can get one
either from your local tourist information office or
town council.
myaware news Summer 2014
16 AROUND THE REGIONS
London &
East of England
Maria Martin
Tel: 01277 621643
[email protected]
Everyone had a fabulous day at the first Monopoly
Board Challenge event on Saturday 21st June. 21
people took part in total, with 13 taking to the streets
for the main event (pictured here at the start)
Approximately £4,000 has been raised from this
South East
Steve Saunders
Tel: 01273 581087
[email protected]
We are very grateful to Abbie Alexander from
Hove who raised £1,120 for myaware by running in
the Brighton Half Marathon earlier this year. Abbie’s
grandfather has MG and she intends to continue her
fundraising to help our charity and those that live with
myasthenia.
Grateful thanks also to Steve Brooker from
Eastbourne, who is now on his way to reaching his
target of £3,000 for our charity. Steve took part in
the Eastbourne Half Marathon in March and raised
another £192 to add to his “running” total.
Anna Whitehead bravely took on the Fareham
Triathlon during May as well as raising more than
£250 for our charity. Thank you to Anna for taking on
the challenge!
myaware news Summer 2014
exciting new event,
and if you couldn’t
make the main
event you can still
get involved by
getting a group of
friends or family
together and doing
your own self-led
walk on a date that suits you.
Contact [email protected] for your
Monopoly Board challenge pack.
Maybe you’ll look as fresh as the finishers above,
checking out the places they’d been on the Monopoly
Board at our finish point. Many other members have
been busy this summer hosting tea party events (see
pictures on the main tea party pages). It’s not too late
to hold your own, contact Maria for a party pack!
Finally, the East of England Conference will be
taking place in Essex on 20th September, if you’ve not
received your invitation or you live outside of the area
but would like to come along, please contact Maria
for details.
The latest Regional Conference to take place in
the South East was hailed a great success by more
than 70 people who attended. Speakers included
Dr Mo Chowdhury, consultant neurologist from the
Conquest Hospital at Hastings, Barbara Hagan from
the Maidstone carers Project and Ruth Ingledew CEO
of myaware who gave an update on the charity.
To celebrate the 20th anniversary of being
diagnosed with MG, Amy Guy from Southampton
organised a fantastic fundraising and awareness
campaign culminating in a big finale Grand Afternoon
Tea at the Lyndhurst Park Hotel in the New Forest.
The campaign which was called Amyshope20 has
now continued into an ongoing project which has
include the opening of Butterflies Community Store
which is a drop in café and swop shop selling clothing
and merchandise amongst other things. Our picture
shows a cheque presentation of £2,000 to myaware
Hampshire as a result of the Amyshope20 fundraising
campaign. Enormous thanks to Amy and her team of
helpers in Southampton!
myaware.org
AROUND THE REGIONS 17
Northern Ireland
Scotland
Jan Beaumont
Lynn Stewart
Tel: 028 9146 2844
Tel: 01698 261752
[email protected]
[email protected]
Myaware Launch
The launch of myaware in Northern Ireland
was recognised by an interview on U105 by Frank
Mitchell with Mr Bill Wolsey. Bill, who has had
myasthenia since his late teens, told of how his
ambitions as a professional footballer with Arsenal
were thwarted by his illness. Despite this, his
determination and ambition have enabled him to
build a hugely successful portfolio of businesses.
The Beannchor Group includes many of Northern
Ireland’s best loved, bars, clubs, restaurants and
hotels in its portfolio. These include the stunning,
multi award winning Merchant Hotel and the
restaurant chain Little Wing Pizzeria which has
developed a cult following with its quirky style and
high quality menu.
Bill discussed how he manages to cope with
his myasthenia on a day to day basis and that
he suffered from a worsening of symtoms which
required changes in medication and a thymectomy.
It is clear Bill has had to cope with many challenges
along the way however it was wonderful to
hear that it is possible to have a successful and
challenging career whilst living with myasthenia. Bill
suggested that
people should
visit myaware’s
new website
for information
about
myasthenia,
the support
and services
available to
people with
myasthenia,
carers and
medical
practitioners.
Life with Art
Life with Art returned
to Hamilton. Coffee
and Cup Cakes were
enjoyed by all those
who attended, after
they had perused
the very varied and
interesting works of art.
Myaware in Dumfries
Recently a lunch meeting was held in Garden
Wise Plant & Garden Centre, Dumfries. Those who
attended enjoyed their time together, chatting,
getting to know one another and discussing the
effect of myasthenia. This was hailed such a great
success that we will all meet up again on 25th
October! If you would like to join us next time,
please contact me.
Onesie Walk
Don your Onesie
and join in the fun on
Sunday 21st September
to raise sponsorship
for myaware. Register
and come along to
Whitelee Windfarm,
the UKs largest onshore
windfarm with stunning views during the walk.
There will be a 3 mile walk plus a 1 mile walk
for little legs or limited ability, both suitable for
buggies and dogs (on a lead at certain places).
There is also a café for a boost of energy on
completion of the walk!
Myaware Scottish Conference 2014
Saturday 4th October is the date for this year’s
conference in The Station Hotel, Perth. I am
delighted that the speakers will be Dr Richard
Davenport, Consultant Neurologist, Western
General Hospital, Edinburgh & Royal Infirmary
Edinburgh, Lesley Murray Advanced Pharmacist
Neurosciences , Southern General Hospital,
Glasgow and Caroline Carmichael, Specialist
Nurse Scotland will attend.
Collection Cans raising awareness and funds –
thank you
Hairmyres Hospital & Ann Crawford,
East Kilbride
Streets Ahead, East Kilbride
Catrine Coffee Shop, Ayrshire
Motherwell Pharmacy, Lanarkshire
BBC Radio Ulster Broadcast Appeal
Myaware continues to benefit from the BBC
Radio Ulster Broadcast Appeal. The appeal was
heard by approx 150,000 listeners and featured
people who have myasthenia and medical
practitioners in Northern Ireland.
www.bbc.co.uk/northernireland/community/
aac/appeals
myaware.org myaware news Summer 2014
18 AROUND THE REGIONS
Ireland
Clare Foley
Tel: 01-4475295
[email protected]
Good Luck Karen!
We are delighted to be saying a temporary
goodbye and good luck to Ireland Regional
Organiser, Karen Clancy who is expecting her third
child in July. Clare Foley will be stepping into the
role full time for the duration of Karen’s Maternity
Leave and looks forward to talking to you.
Myaware Launch – Ireland
To celebrate your
new look charity we
had a special launch
at the Westbury
Hotel in Dublin on
Monday 26th May.
Ronnie Whelan and
member Christina
Barrett spoke to
press and guests
about the next phase for the charity – this also gave
us the opportunity to speak with Tony O’Brien of the
HSE about the needs of people with myasthenia.
Thank you Mini Marathon Runners!
A Big thank you to those who took part in the
Flora Women’s Mini Marathon on 2nd June on behalf
of myaware – Karl Brown, Melanie Keegan, Veruska
Ancinitana, Edina Orsos, Michaela Nuding, Lynn
Barrett and Deborah Brennan – well done everyone!!!
Ronnie Whelan’s Celebrity Golf Classic
Ronnie added a few more miles to his feet by
hosting his annual Golf Classic at the 5* Powerscourt
Golf Club on 6th June. Joined by a host of Irish
sports & TV stars it was a great day which helped
raise awareness for myaware, the Marie Keating
Foundation and CARi.
Among the stars to come out swinging were
Laurence Kinlan, Danny O’Carroll, Brian Ormond,
Niall Breslin and Shane Byrne.
We’d like to especially thank myaware member
Christina Barrett. Christina spoke eloquently about
her journey with myasthenia at the auction and
dinner afterwards – to a huge round of applause.
Ways you can help in 2014
Birthday / Anniversary
Quiz Night
Do you have a special birthday or anniversary this
Running your own quiz
year! If so why not ask for donations to your charity
instead of presents.
Hold a Dinner Party
night can be great fun.
Preparation will be the
key to the success of this
event.
Sell on eBay
Get rid of unwanted items
and raise money for our
charity.
Car Boot Sale
One man’s rubbish is
another man’s gold!
For help, advice or
Host your own dinner party have your family friends
further information contact
head office on 01332
over. Cook them a meal and ask them to make a
290219 or email info@
Donation to the charity.
myaware.org
myaware news Summer 2014
myaware.org
NEWS 19
Lottery Draw
Winners
Travel insurance without doubt
We’re heading towards summertime now, and holidays are on many
people’s minds – scouring those websites for deals, gazing into travel
agents’ windows, flicking through brochures in search of that dream
getaway to escape it all for a while.
Fast forward to a booking made, and people plan their checklist of
Name Prize Value
what to take – pack those beach towels, swimwear, guide books etc.
Yet, have they thought about a holiday essential that should go in the
1st Mrs J McKay,
bag? Travel insurance documents are so important.
Manchester
£1,000
None of us knows what could be around the corner, and if
something
were to happen you want to be safe in the knowledge
2nd Mr N Evans, Devon
£350
that you’re covered for any eventuality. If you are taken ill, medical
3rd Mr D Woolf, London
£150
treatment may not come cheaply, particularly in countries like Spain
and the United States of America. How would you afford these
medical bills without travel insurance?
It’s not worth the risk of heading on holiday without travel insurance in
place – particularly if you have pre-existing medical conditions or disabilities.
When searching for travel insurance, you should look closely at
what is being provided. Does the policy cover heart conditions, and all
medical conditions, disabilities, allergies, everything declared, or are
there exclusions to this?
1st Mrs N Bedford, Boston £74.00
Travel insurance is certainly an area where understanding the cover
provided is key, since the next person’s needs may be very different to
2nd Mrs S Huggett,
your own.
Betchworth
£44.40
Unique has an established partnership with myaware, giving you access
to
a
travel insurance policy that covers people living with heart disease
3rd Mr W Warrenn,
and any other medical conditions and disabilities, their families and
Abergavenny
£29.60
friends travelling with them, and supporters of myaware. It’s important to
remember a few things when considering your travel policy choice…
We are not a ‘one size fits all’ service; we look at individual
circumstances, your destination, and how long you’re away for before
1st Mrs M Perritt, St Ives £73.50
providing your quotation. Also, we offer two levels of cover to vary
what you need for medical, cancellation and baggage cover.
2nd Mrs J Barton, Benfleet £44.10
We do not have an upper age limit on our policies, this has recently
3rd Mr D Dodd, Wigan
£29.40
been removed from annual travel insurance.
We offer a personal service, where you won’t be rushed to complete, and our online quote and buy website includes ‘Web Chat’ – a
link to our team to assist if there’s something you’re unsure of.
1st Mrs S Eddison, Beeston £72.25
Should anything unexpected happen when you are away, our
2nd Mrs S Hugget, Betchworth £43.35
assistance and claims contacts work with you closely and quickly to
ensure you get the help and support that you need, with a worldwide
3rd Mr B Durrant, Norwich £28.90
network that has a proven track record. A 24/7 multi-lingual medical
emergency service is available.
Congratulations to all the winners
Also cover for the whole travelling party can be provided, so
should anything happen, you would be able to
travel home together.
Myaware receives a
For more information or a no obligation
donation for every policy
sold, at no extra cost to you.
quotation, please call the Unique team on 0800
519 0750, email [email protected] or visit
We have worked with the Myaware and insurers, so that
www.myaware.org
those affected by myasthenia, and all pre-existing
Subject to underwriting terms and
medical conditions and disabilities, can access
comprehensive and competitively priced insurance.
conditions, please see policy wording at
For more information please visit www.myaware.org
myaware.org
Alternatively, call the Unique team on
myaware (Myasthenia Gravis Association) is an
0800 519 0750 (quoting Mynews).
Introducer
Appointed Representative of Heath
Opening hours: 8.30am - 6pm Monday to Friday and 9am - 1pm Saturday
Lambert Limited. Unique is a trading name of
Heath Lambert Limited, which is authorised and
home insurance • motor insurance
regulated by the Financial Conduct Authority.
travel insurance • life assurance
Registered Office: The Walbrook Building, 25
Myasthenia Gravis Association is an Introducer Appointed Representative of Heath Lambert Limited. Unique is a trading name
Walbrook, London EC4N 8AW. Registered in
of Heath Lambert Limited, which is authorised and regulated by the Financial Services Authority. Registered Office: 9 Alie
Street, London, E1 8DE. Registered Number: 1199129 England and Wales. www.gallagherheath.com SD3342_A/24012012
England and Wales. Company Number: 1199129.
Winter 2013
McPherson Draw
Winners
Draw February 2014
Draw March 2014
Draw April 2014
Unique insurance.
Partnerships that work.
myaware.org myaware news Summer 2014
20 INFORMATION
IMPORTANT
INFORMATION
Myasthenia Specialist Nurses
Suzanne Tluk
The National Hospital
London
Lisa Joyce
Southampton General Hospital
Southampton
Caroline Carmichael
Southern General Hospital
Glasgow
Please contact Derby Head Office for
nurses contact details.
Benefits Officer
Email: [email protected]
Recycle your print cartridges and raise funds
for myaware.
Recycle4Charity
Tel: 01273 400185
or email: [email protected]
Insurance for All of Your Needs
You may be aware that Heath Lambert have
been working with us for around 10 years
now and offer our members and supporters
insurance, including travel, house, life and
recently More 2 Life who are equity release
experts. Tel: 01603 828359
Receive our periodic
newsletter and get regular
updates about myasthenia,
events and news.
Just sign up at
www.myaware.org/newsletter
myaware news Summer 2014
Myasthenia Forum
Join our online community, where you will
find advice, information and peer support
24/7. Share your experiences and advice
with others. Ask questions and learn more
about myasthenia from fellow sufferers
from all round the world. Make new friends
without leaving your armchair. Start your own
blog about your experiences, read other
Myasthenics’ blogs. Chat online in real time
with your fellow forum friends. All this and
more available now.
Log directly onto www.myaware.org then
click on forum.
HelpLines:
UK: 0800 919922
Ireland: 1800 409672
We’re on the WEB
www.myaware.org
www.myaware.ie
Find us on Facebook
facebook.com/myastheniauk
myaware
The College Business Centre
Uttoxeter New Road
Derby DE22 3WZ
Tel: 01332 290219
Web: www.myaware.org
Email: [email protected]
The Association does its best to ensure that the
information contained in this newsletter and on its
website is as complete and up-to-date as possible at
the time of publication, but cannot accept any legal or
other liability MGA is a Registered Charity No. England
& Wales 1046443. Scotland SC044744.
Company Limited by Guarantee No. 3038358 (England)
Closing date for next edition:
Friday 5th September 2014
myaware.org