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Jan/Feb 2012
Newsletter
South Tyneside Branch
Important newsletter info
In order to keep costs down, starting with this issue,
this newsletter will be sent to subscribers in digital
format to those with email addresses unless a printed
copy is specifically asked for. If you still need a printed
copy contact the branch secretary.
Research breakthrough
Image: popsci.com
Exciting news was
announced near the end of
last year. This news was that
the pioneering work of MS
Society funded scientists has
brought us to the verge of
being able to beat MS.
Scientists from across the UK, led by Professor Robin Franklin
at the Cambridge Centre for Myelin Repair in collaboration
with the Centre for Translational Research in Edinburgh, have
made a truly revolutionary discovery - they have proved in the
laboratory that it is possible to repair myelin.
As you know, myelin damage in people with MS prevents their
brain sending messages around their body, leading to a range
of often distressing symptoms, which accumulate over time
and lead to severe disability. However the collaborative
scientific effort led by Professor Franklin has found a way to
stimulate the brain's own stem cells using drug therapies,
which could halt or perhaps even reverse myelin damage.
This breakthrough has given real hope of beating MS and
transforming the lives of millions of people around the
world, both now and for future generations.
For people with progressive MS, it could mean a drug being
available that can stop their condition becoming worse, or
even reverse the symptoms they may have.
Continued on page 2...
Contents
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Annual meeting
MS Life 2012
News about the MS
Society's biggest
event of the year.
Fundraising
What your branch is
doing to raise money
and how you can help.
Adventures
A weekend break with
activities for all.
Parking
Advice on appealing
against Penalty
Charge Notices.
Caravan
Your branch caravan
at Haggerston Castle
is ready for bookings.
Halloween 2011
Pictures from your
branch Halloween
party last year.
Diary dates
10 Fun page
11 Contact info.
Research breakthrough
Continued from the front page...
It could mean people no longer have to live
with the uncertainty, distress and anxiety that
a diagnosis of MS currently brings.
couldn't have happened without your support.
That's why it is absolutely critical we maintain
the momentum - and we hope you can help
with collecting donations to help ensure we
do so.
"It could mean that, within a
generation, we could beat MS."
If you or a loved one is affected by MS, we're
sure you will be as
excited as we are
about what this could
mean.
Funding is now urgently needed to allow the
work of the scientists to continue, so they can
take the vital next steps and translate their
groundbreaking findings into effective
treatment.
We are extremely confident that these
findings represent the most significant
scientific breakthrough in nearly 60 years of
MS Society funded research, something that
Thanks to you, all our members, a treatment
to halt the progression of MS is finally within
reach. Together, we know we can and will
beat this terrible condition.
To make a donation please call 0800 100 133
or visit www.mssociety.org.uk/hope
Source: Text paraphrased from MS Society
Branch Annual Meeting 2012
The Annual Meeting of the branch will be held
at Cleadon Park Primary Care Centre, Prince
Edward Road, South Shields, Tyne & Wear
NE34 7QD on Wednesday 4th April 2012 at
6.45pm.
We would welcome nominations for the
following committee posts: Chair; Secretary;
Treasurer; Support Officer; Newsletter Editor;
Website Editor; Fundraising Officer; General
Committee Members.
Car parking is available and the venue is
accessible. If you wish to attend, but need
transport, please contact our Support Officer
Angela Walker by phone/text on 0191 454
6162 by Sunday 1st April, who will advise
about arrangements.
A number of these posts are currently vacant,
so we would particularly welcome
nominations from members wishing to
volunteer for the Website Editor and
Fundraising roles. Further details of all roles
can be obtained by calling our Secretary, Les
Greenwood on 07817 126852 or from the
branch volunteer role descriptions section of
the MS Society website.
This is an opportunity to review the activities
of the past year, discuss branch matters and
future plans. It is important that as many
members as possible come along so you can
all feel involved. (Please bring something light
to add to the buffet table.)
Full details have been included in a letter
which has been sent with this newsletter. If
you need a separate copy please contact Les.
The planned publication for the next newsletter is early May 2012. If you know of anyone
else who'd like to receive it please contact the branch secretary.
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www.twitter.com/mssocietyuk
Follow what's happening in the "twittersphere".
Christmas Lunch
On Wednesday, 7th December, over 20 of our branch members met up
at Taybarns, South Shields, for what proved to be a very enjoyable and
convivial evening. It was a time to catch up with old friends and meet
new ones during the festive season. The meal catered for all tastes just the thing on a very cold night!
Pictured are (left) branch
chairman Dave Farham
with his wife Jean behind
him and (right) Jacqui
High with her carer Lesley
behind her.
MS Life 2012
Join over 3000 people from across the UK at
the amazing lifestyle and MS knowledge
event on 14-15 April 2012 when MS Life, the
MS Society’s biggest event, heads to
Manchester.
Hear from leading MS researchers on hot
topics such as:
• Myelin repair
• Disease modifying drugs
• Stem cell treatment
• Immunology
• Symptom management
• Adjusting to MS
Or ask any burning questions to a range of
MS health care professionals and advisors in
our Meet the Experts area.
There will be over 40 workshops taking place
across the weekend covering everything from
symptom management to benefits and
employment to sex and relationships to
support for carers.
In between attending research talks and
workshops why not explore the lifestyle
www.ukmsregister.org
You can help with a groundbreaking study.
village. The exhibition will cover all aspects of
living with MS, with an exciting range of
organisations offering everything from
information and support to products and
services. Or perhaps relax and enjoy some
complementary therapies at the MS Spa
before watching some live cookery.
Learn about online services and support at
the internet café or simply take some time out
from the event to do some web surfing.
If you have children there will be a free crèche
available on site with lots of fun activities to
keep little ones entertained whilst you enjoy
MS Life. Or why not get them to join you at
the Wheel and Walk fundraising event on
Sunday.
Find out more about MS Life by visiting the
website www.mssociety.org.uk/mslife or email
[email protected]
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Fundraising and you
South Tyneside branch is starting a fundraising drive with a
current target of £53,000! It’s a tall order but with your help we
can do it.
The money raised will be put to good use, going towards the
many branch activities such as the annual trips out, the
monthly socials, individual grants or replacing the branch’s
holiday home caravan at Haggerston Castle.
Around the page are some ideas which you might like to
organise or get other friends, family or work colleagues to get
involved with. For more inspiration, or tips on how to set
something up, try the following links on the web:
www.mssociety.org.uk/fundraising
www.how2fundraise.org
Your branch committee is currently looking at different options
for fundraising targets, but if you have any suggestions then
please contact either the branch secretary or chairman giving
full details of your ideas.
We'll be using a graphic like that below to show progress in
each newsletter. The further the little person moves up the hill
the more you've helped to raise.
Happy holiday
Make your boss the most popular
person in the office by getting them
to donate a day’s holiday as a raffle
prize. Ask colleagues to pay a
pound or more to enter the raffle
and then randomly pick a winner.
Who's the baby?
Pretty much everyone has a baby
picture they're embarrased of. So
why not get everyone in the office
to bring one in so everyone can
guess who is who?
Blooming great
Hold a plant or flower sale.
Camellia, clematis, delphinium or
daffodil... plants sell like hot
cakes... (which is another great
idea for a fundraiser).
Office olympics
Try your hand at speed typing,
synchronised chair swivelling or
fast letter franking. There are many
events you can compete in to
become an Office Olympics
champion.
Games evening
Virtual challenge
Get sponsored to swim the English
Channel in your local pool or cycle
America’s Route 66 without leaving
your gym. All you have to do is
work out how far they are and then
cover that distance. And
remember, you don’t have to do it
all in one go!
Go the distance
Get a school or club to cover a
distance using pound coins. It
could be a mile or the length of a
school hall or playing field.
Whatever the distance covered, big
money will be raised.
Go traditional with some pub
games – dominoes, skittles or
shove ha’penny, anyone? Or how
about something retro? Find out
who’s the boss at Kerplunk,
Connect 4 and Buckaroo.
Letter party
Pick a letter from the alphabet and
base everything around that letter...
dress code, food, drinks and
music.
What's your
idea?
The date for MS Week 2012 has been confirmed as 30 April – 6 May 2012. Put the date in
your diaries!
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www.hardesthit.org.uk
Help fight the cuts to disability benefits.
Virus link research positive
A new study from researchers at Queen Mary,
University of London shows how a particular
virus tricks the immune system into triggering
inflammation and nerve cell damage in the
brain linked to MS. Previous research has
suggested a link between the Epstein-Barr
virus (EBV) and MS but the research has
remained controversial since scientists have
so far failed to substantiate the link.
The new study proves the virus is involved in
a manner more sophisticated and subtle than
previously imagined, and may offer new ways
to treat or prevent the disease.
Previous research has suggested that EBV
triggers MS but subsequent studies have
failed to find the connection. The new
research, which is published in the journal
Neurology, looked at post mortem brains of
MS patients, examining areas where
neurological damage had recently occurred.
Dr Ute-Christiane Meier from Bart’s and the
London Medical School, part of Queen Mary,
led the research. She explained: "EBV is quite
a clever virus; when it's not growing and
spreading it can hide away in our immune
cells. In this study we used a different
technique which allowed us to detect the
virus in the brains of some people with MS,
even when it was hiding away in the cells."
Dr Meier and her team found that, although
the virus was not actively spreading, it was
releasing a chemical message into areas of
the brain nearby. This chemical message made up of small RNA molecules - was
activating the body's immune system,
causing inflammation which damages nerve
cells in the brain and causes MS symptoms.
Dr Meier continued: "We have to be careful
and have to study more MS brains but this is
potentially very exciting research. Now we
understand how EBV gets smuggled into the
brain by cells of the immune system and that
www.youtube.com/user/MSSociety
Videos and more.
it is found at
the crime
scene, right
where the
attack on our
nervous
system
occurs. Now
we know this,
Image: jscreationzs / freedigitalphotos.net
we may have
a number of
new ways of treating or even preventing the
disease."
One possibility is the widely-used cancer
treatment Rituximab; a drug which is known
to kill the cells of the immune system in which
the virus hides. It is now being trialed as a
treatment for MS.
Another possible approach, using anti-viral
treatment, will be tested in clinical trials
currently in preparation by Professor Gavin
Giovannoni and colleagues, also at Queen
Mary.
"If we can pinpoint EBV as a trigger, it's
possible that we could alter the course of MS
or potentially even prevent the condition by
treating the virus," Dr Meier added. "MS so
often strikes young (people) and its
unpredictable nature makes it an incredibly
difficult disease to live with. We desperately
need better ways to tackle the condition."
Interestingly, the research also hinted that
infection with EBV and its action on the
immune system could also be playing a role in
other brain diseases such as cancer and
stroke.
This research was supported by the Medical
Research Council and MS charities, Roan
Charitable Trust and Aims2Cure.
Source: Medical News Today 16/01/12
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MS Adventure weekend at Calvert Trust
Following the
success of two
taster weekends
in 2011, the
Calvert Trust team
are organising a
long weekend
break for people with MS, their families and
friends at their holiday centre in Kielder,
Northumberland.
From Friday 27 to Monday 30 April, try your
hand at activities including archery, abseiling,
zip wire, sailing, golf buggies, the
hydrotherapy pool and more. Each session
will last half a day, giving you more time to get
stuck in.
includes all meals, activities and fully
accessible accommodation in the centre or
one of the Scandinavian-style lodges.
The adult respite care package includes
24 hour care assistance during your break
and costs £440 per person for 3 nights.
Please contact the team on 01434 250232 to
discuss your needs.
To make a provisional booking, call the
Calvert Trust team on 01434 250232 or email
[email protected].
Also check out their website for lots more
information about the centre and its facilities:
www.calvert-trust.org.uk/kielder
In the evenings,
enjoy the
entertainment
provided or relax
in the games
room, TV lounge,
snug or fully licensed bar.
Short Breaks and Activities (SBA) Fund
The Short Breaks and Activities fund
considers grants for people with MS and their
carers, and may be able to contribute to the
cost of your break. Contact the MS Society
Grants team on 020 8438 0700 or email
[email protected].
Recent branch meeting presentations
3 nights costs £309 per person which
Wednesday 5th October - "Types of MS, Key points & Clinical courses"
A short presentation on the types of MS (Relapsing-remitting, Secondary progressive and
Primary progressive), their key points and the patterns (clinical courses) of each.
The presentation was followed by a discussion about healthy eating, diet, symptoms and
fatigue, foods and fluids, supplements like Vitamin D and Sativex etc.
This highly enjoyable and informative presentation was kindly given by Gill Smith, MS Specialist
Nurse, Newcastle upon Tyne Hospitals Trust, who is based at the RVI in Newcastle. A copy of
the full presentation was kindly forwarded by Gill and can be sent to those with internet access
as Powerpoint attachments or in paper format posted to those who would prefer it as a hard
copy. Phone your branch secretary Les on 07817 126852, for more information.
The cut-off date for the submission of articles for the next newsletter is the 17th of April.
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www.facebook.com/MSSociety
Connect and share with people in your life.
What if my badge was displayed correctly?
Many disabled drivers are given Penalty
Charge Notices (PCN’s) for breaches of
parking conditions. They often ask
themselves the question should they take the
hit or appeal. You can get a PCN for any
perceived offence – from displaying your Blue
Badge upside down, forgetting to set your
time clock or simply parking somewhere
where the local rules are unclear. It is virtually
impossible to predict whether or not your
appeal will be successful appealing a PCN
can also be a lot of hassle, with
correspondence, form-filling and
photocopying which can drag on for months.
Nevertheless it may still be worthwhile. Here
is some advice from Disabled Motoring UK on
appealing:
If you receive a PCN for parking in a Blue
Badge space without a valid permit and
appeal on the grounds that you do have a
Blue Badge and it was displayed correctly,
then usually the issuing authority will simply
review pictures taken of your vehicle by their
enforcement officer and decide whether the
ticket has been issued in error. There have
been many cases where officers have simply
failed to notice Blue Badges that were
displayed but not on the dashboard.
My badge was the wrong way round / upside
down!
It’s very easy to leave your Badge displayed
the wrong way round by mistake, or with the
clock obscuring the expiry date on the Badge
itself. This is a common trick used by
fraudsters using out-of-date badges.
However, an appeal including a photocopy of
your valid badge may still be successful. After
all, if the badge is valid and was definitely in
the car, the issuers are able to determine that
it was not being used illegally.
I forgot to display my badge
Most councils and other issuing authorities
have a clear appeals procedure that must be
followed. This will vary depending on whether
the ticket was issued on-street or off-street.
Appealing any kind of ticket usually involves
plenty of form-filling! However, as long as all
the mitigating circumstances are included
many people will have a successful appeal at
the initial stage. If you intend to appeal, it is
important that you reply to the issuer
immediately giving notice of your intention to
appeal, even if you need a bit more time to
complete the appeal itself. Many councils and
companies will offer you the chance to pay
half the fine if you do so within 14 days; if you
respond saying that you are challenging the
ticket you should be able to pay this lower
fine, even if your subsequent appeal is
unsuccessful.
If you have forgotten to display your badge
altogether the issuer could refuse your appeal
on the grounds that the permit could have
been in use in another vehicle at the same
time. However, you should still appeal,
including details of your valid Blue Badge.
Sometimes your appeal will be successful,
although it will be at the discretion of the
issuer.
I overstayed!
Disabled Motoring UK campaign to allow Blue
Badge holders extra time to park, in
recognition of the fact that it takes them
longer to load / unload mobility aids, as well
as travel to and from their destination. If you
receive a ticket in a car park where badge
Continued on page 8...
www.msrc.co.uk
The Multiple Sclerosis Resource Centre.
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Continued from page 7...
holders are charged the same as non-badge
holders, and are not allowed any extra time to
park, causing you to overstay by a very short
period of time, it may still be worth appealing.
I didn’t see the sign!
With many car parks and councils now
charging either a full or discounted rate for
Blue Badge holders, it’s no longer safe to
assume that you can park for free. But there is
an obligation for parking charges to be clearly
signed. If the signs are missing, illegible or
overgrown you have a good case for an
appeal. It is helpful if you can take photos
immediately (preferably date stamped) to
back up your appeal.
Appealing a ticket can be time-consuming
and frustrating, but that does not mean that
you will not be successful. Keeping copies of
all of your correspondence, including
telephone conversations (remember to take
down the name of the member of staff you
have spoken with, as well as the time and
date) can help you progress quicker as well as
point out any inaccuracies.
Haggerston Castle Caravan
Source: Disabled Motoring UK, August 2011
Did you know that your branch
has a caravan at Haggerston
Castle that's available for hire
at special rates?
It's a six-berth caravan that
was specially built for
wheelchair users and has a
large bedroom and bathroom,
all with sliding doors etc.
(Unfortunately there's no hoist.)
It's available for hire between
March and October. If you'd
like to make a booking, or need
more information, please
contact the branch chairman,
Dave Farham, on 0191 454
4611.
Image: Les Greenwood
By way of things to do there’s
a luxury spa, state-of-the-art
indoor pool, climbing wall,
ropes course, boating,
bowling, horse riding and
much more.
For the little ones there are
Kids' Clubs with daily
entertainment from breakfast
and all the way through the day.
Image: Les Greenwood
About Haggerston Castle
Virtually all of Haggerston Castle Holiday Park
is wheelchair friendly and it is located in a
beautiful part of the country in
Northumberland.
The location gives great access to many
places such as Berwick-upon-Tweed, Holy
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Island and the border country.
The parkland, once a country
estate, is beautifully
landscaped and set around
seven lakes, with mature
woodlands and Italianate
gardens.
Evenings are well catered for too with a full
programme of entertainment with cabaret,
comedy, stage shows and professional acts
all the way through the summer.
For much more information on the park itself
just point your browser at this page:
http://www.haven.com/parks/northumberland
/haggerston-castle/index.aspx
www.mstrust.org.uk
The Multiple Sclerosis Trust.
Halloween Party 2011
The South Tyneside and Sunderland branches
teamed up to host a Halloween Party at
Fullwell Fire Station Club last October.
Ian Dobson from the Young Persons Group
has kindly supplied photos of the event.
Dates for your diary
General
Branch Meetings.
Cleadon Park Primary Care Centre, South Shields (6.45 P.M.)
The first Wednesday of each month.
March
Branch meeting - talk/presentation on the Prison Service by Derek Johnson.
7th March - Cleadon Park Primary Care Centre (6.45 P.M.)
April
Branch Annual Meeting - see Page 2 of this newsletter.
4th April - Cleadon Park Primary Care Centre (6.45 P.M.)
Open to all. Please bring something to add to the buffet table if possible.
May
Branch meeting - presentation by Bluebird Care.
2nd May - Cleadon Park Primary Care Centre (6.45 P.M.)
Unless otherwise stated, all transport arrangements should be made with Angela Walker.
If you know of an event to share with others then please contact the branch secretary.
homepage.mac.com/carenjosephs/OurMSstories/
Read about the experiences of other people with MS and share your own.
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The Fun Page
If you have your own jokes or puzzles just contact the newsletter
editor and we'll see if you can get your stuff in the next issue. Just
make sure your jokes are clean and any puzzles are solvable.
Chairman's choice
Here's more "Top 25" jokes sent in by your
chairman, still counting down from 15 to 11:
15. There's two fish in a tank, and one says to
the other "How do you drive this thing?".
14. A woman has twins, and gives them up for
adoption. One of them goes to a family in
Egypt and is named "Amal". The other
goes to a family in Spain, they name him
"Juan". Years later, Juan sends a picture of
himself to his mum. Upon receiving the
picture, she tells her husband that she
wished she also had a picture of Amal.
Her husband responds, "But they are
twins. If you've seen Juan, you've seen
Amal".
13. I saw this bloke chatting up a cheetah. I
thought, "He's trying to pull a fast one".
12. My mother­in­law fell down a wishing well. I
was amazed, I never knew they worked.
11. I went to the doctors the other day and I
said, "Have you got anything for wind?".
So he gave me a kite.
Clockwise?
I have a clock that first showed one minute to
seven and the next minute it showed five
o'clock. Why was that?
Answers will be in the next issue.
The answers to last issue's puzzles are:
Missing Letter: L ­ All the letters start with a
vowel sound.
Crossword: Across ­ 1. OCH, 5. LETE, 7. IBID, 8.
ANEM, 9. KING. Down ­ 2. CLINK, 3. HEBEI, 4.
PED, 6. TIMN.
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It's a bit fishy
Move three matches to make the fish swim in
the opposite direction.
Say what you see
Which well known phrases can you figure out
from the clues below?
GG
1.
2.
3.
4.
P
P
Pleasant CCU
E
Y
E
e r e
KIDS
r
q
i u
S
www.mssociety.org.uk
Your first stop for MS matters on the internet.
Contact information
Your branch
Postal address:
Chairman
Contact the branch secretary for the branch
address.
David Farham
Email: [email protected]
Tel: 0191 454 4611
Secretary
Les Greenwood
Email: [email protected]
Mobile: 07817 126852
Treasurer
Peter McGonnell
Email: [email protected]
Tel: 0191 489 6769
Support Officer
Angela Walker
Tel: 0191 4546162 - Mobile: 07723 650444
Committee Member
Andrew McGonnell
Committee Member
Derek Johnson
Fundraising
Peter and June Cue
Young Persons Group
Ian Dobson
Newsletter Editor
Garry Patchett
Email: [email protected]
Regional and national contacts
Sunderland General Hospital
Newcastle RVI, Newcastle General, Freeman Hospital
Palmer's Hospital, Jarrow
South Tyneside social services
Council Tax/Housing Benefits
Home Loans Equipment Centre
South Shields and Jarrow DSS
Consumer Advice, South Shields
Consumer Advice, Jarrow
South Tyneside Carers Association
Shopmobility
DLA advice
0191 5656 256
0191 232 6161
0191 451 6065
0191 427 1717
0191 427 9999
0191 454 0927
0191 201 2727
0191 427 1717 (ext 2550)
0191 489 3414
0191 454 3346
0191 454 6286
08457 123 456
This MS newsletter is published by the South Tyneside District Branch of the MS Society.
We give regular updates about MS and what is happening locally in the MS community.
Editor: Garry Patchett
All the views expressed in this publication are individual and not necessarily the view or policy of the charity and
its supporters. Registered charity nos. 1139257/ SC041990.
Registered as a limited company in England and Wales 07451571.
www.mapms.org.uk
Help to put MS on the map.
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