Aware Autumn 2011

aware
Autumn 2011 : Issue 15
Growth of Awareness in June
MND Awareness Week 2011
Read more inside:
• Opportunity to Help Research Progress
• Voice Your Needs to the NHS
• September Fun Run at Holyrood Park
• Support for Children and Young People
• Dates for Support Groups
calendar of events
2011/12 events:
September:
Sunday 4th September
Fun Run and Sponsored Walk,
Holyrood Park, Edinburgh
New for 2011! Get
sponsored to walk, jog
NEW
or run the 5km course
around Arthur’s Seat –
T shirt and medal for all
entrants. You can register online
at www.mndscotland.org.uk
Sunday 4th September
Great Scottish Run Half
Marathon and 10K
Be part of the Scotland’s
biggest road race through
Glasgow.
Sunday 18th September
Ladies Lunch,
Grange Manor Hotel
Central Branch will be holding
their annual Ladies Lunch,
and tickets are available
priced £20.
October:
Saturday 1st October
MND Scotland Conference,
Stirling
Our annual conference and AGM.
Everyone with an interest in MND
is welcome to attend.
Sunday 2nd October
Cumbrae Cycle
Cycle (or walk) round the
island of Cumbrae, starting and
finishing in Millport. Ferry
fares, bus fares on Cumbrae
and cycle hire will be paid by
MND Scotland - all you have to
do is get sponsored. To register
for the Cumbrae Cycle, or for
further information, please
contact the Fundraising
Department.
Sunday 2nd October
Forth Rail Bridge Abseil
An amazing opportunity to
abseil 165ft SAS style (i.e.
free-fall) from the Forth Rail
Bridge onto the beach below
at South Queensferry. To
register or for further
information, please contact the
Fundraising Department.
Sunday 2nd October
Loch Ness Marathon & 10K
We have guaranteed places
available – please contact the
Fundraising Department for
details.
Friday 28th October
Cornflower Ball, Crowne Plaza,
Glasgow
Featuring the fabulous Big Vern
‘n’ the Shootahs. Tickets
available priced £50 until 1st
September (£55 after this date),
and tables of 10 are available.
December:
Thursday 1st December
Christmas Curry & Race Night,
Mister Singh’s India, Elderslie
Street, Glasgow
Back again for a second year,
7.30pm, tickets priced £25. Contact
[email protected] to
book your place now!
September/
October 2012:
22nd September –
1st October 2012
Machu Picchu Challenge
Trek the Inca Trail to Machu Picchu
- this is the opportunity to take
part with other MND Scotland
supporters and visit this fantastic
destination which will provide you
with an unbelievable experience
you will never forget.
Please contact the Fundraising
Department for details, or visit
www.mndscotland.org.uk for
more information.
Supporting people
affected by
Motor Neurone Disease
Holyrood Park 5km Fun Run
Entry £
and Sponsored Walk
10
Mem
Sunday 4th September 2011
Holyrood Park, Edinburgh
Further Information and Entry Forms available from
0141 945 1077 or www.mndscotland.org.uk
Scottish Charity Number SC 002662
2
bers: F
REE
Under 1
6’s: FRE
E
£12 on
the day
Welcome to the Autumn edition of
Aware, which seems to have an
underlying theme of ‘get involved’. As
well as the usual encouragement to
take part in the various fundraising
events throughout the year , including
a new Fun Run/walk taking place in
Edinburgh around Arthur’s Seat, there is
also an appeal for people to take part
in some research that we are funding
looking at the provision of services for
people affected by MND across
Scotland. For this research to be a
success such that it provides the data
that we can use to improve services in
the future, we need you to become
involved. All that is required is talking
to a researcher about four times over
the course of the year, so please think
about talking part and help to improve
things for those in the future.
Also featured in this edition is some
information on the ‘Neurological
Voices’ programme. This initiative
being run by the Neurological Alliance
of Scotland of which we are a
member, seeks to give people the
skills and confidence to become
involved in shaping the future of the
NHS. If you would like to make a
difference to how your local clinic or
hospital provides services for people
with neurological conditions in the
future then why not give it a go!
Awareness week and our ‘Growing
Awareness of MND’ campaign and
that you will continue to support the
work of MND Scotland in whatever
way you can.
Best wishes
Craig W F Stockton
Chief Executive
I hope you enjoy reading about these
and the other articles in this edition,
including our activities during MND
Index
RESEARCH
4-5 FIRST FUN RUN OF THE YEAR
Why do different types of mutations cause the same form of
disease? A social research project is also recruiting volunteers
to share their experience of local services..
PERSONAL STORIES
Strathclyde Park once again hosted our longest running
fundraising event. It was another successful and
popular day with our supporters.
4-5 COMPLEMENTARY
THERAPISTS NEEDED
Read the personal story of a man choosing to live with
the reality of Motor Neurone Disease.
NEUROLOGICAL VOICES
6
Training to get involved in planning and improving your own
local health services.
12
MND Scotland’s Complementary Therapy service is
expanding and would benefit from more therapists. Find
out how to get involved.
COUNSELLING RESOURCES
7 FOR KIDS
AWARENESS WEEK
11
12
Diverse forms of publicity using our Cornflower to promote
‘Growth of Awareness of MND’.
Supporting children and young people.
FUNDRAISING
ACKNOWLEDGEMENTS
Take a look at what’s going on in your area amongst the
MND community. There are opportunities to meet up with
others who feel the benefit of shared support.
LOCAL SUPPORT GROUP DATES
8-9
The recent efforts of our charity’s supporters who have
gone all out to raise funds for us.
CORNFLOWER BALL 2011
INFORMATION FOR PEOPLE
10 WITH DISABILITIES
Our astounding annual dinner/dance will once again
feature Big Verne ‘n’ the Shootahs, with high class prizes
up for grabs, all in aid of MND Scotland. Get in early to
book your tickets.
THE INCA TRAIL TO
MACHU PICCHU IN 2012
13
13
New Radar publications.
BRANCH UPDATE
14
Event reviews and news about forthcoming activities in
Edinburgh, and Central regions.
10 LANG BREAK CARAVAN
15
The specially adapted caravan, near St Andrews, still has
vacancies for late summer and autumn.
An experience of a lifetime to raise funds for us.
NEW FUN RUN LAUNCHED
AT HOLYROOD
Chief Executive’s message • index
Chief Executive’s Message
11
A new event, tied in with 30th Anniversary celebrations, gives
you the chance to run, jog or walk with other fundraisers on a
route around Arthur’s Seat.
MND Scotland tel. 0141 945 1077 email. [email protected] website. www.mndscotland.org.uk
3
research
Research
Scientists Solve Mystery
Of Nerve Disease Genes
For several years, scientists
have been pondering a
question about CharcotMarie-Tooth (CMT) Disease
Type 2D: “How can different
types of mutations that are
spread out across a gene all
produce the same disease?”
A question that also applies
to MND, where over 100
disease causing mutations
are known in the SOD 1
gene alone.
Now, a team studying a
gene called GARS at The
Scripps Research Institute in
the USA may have found the
answer since all the disease
causing mutations they
studied have one thing in
common: They cause the
normally tightly coiled threedimensional shape of the
enzyme the gene makes to
become more open creating a space into which
other proteins can bind, so
causing havoc.
"That is the basis for
potential disease-causing
interactions," said Scripps
Research Associate Professor
Xiang-Lei Yang, senior author
of the study, "but also for
potential therapeutic
intervention." It is possible
that scientists could develop
drugs to fit into the open
area, blocking it to other
proteins.
The findings, which were
4
published online in
Proceedings of the National
Academies of the Sciences in
July, help explain how CMT
type 2D originates and may
also have implications for
other diseases, such as MND.
CMT is the most common
inherited neurological
disorder, estimated to affect
one in 2,500 people.
Although it is not fatal, CMT
causes progressive weakness
and wasting of muscles in
the feet, legs, hands, and
forearms by damaging the
nerves that serve these
muscles.
There are five different
forms of CMT, and each has
various subtypes depending
on the responsible gene.
CMT type 2D is inherited in a
dominant manner via the
GARS gene, which holds
instructions for producing an
enzyme that is vital for
protein synthesis. Just like
familial MND, a person needs
to inherit only one faulty
copy of the gene from one
parent to get the disease.
So far, scientists have found
11 different disease causing
mutations in the GARS gene
that cause CMT type 2D.
Some of these affect the
function of the enzyme, but
others don't, suggesting that
CMT is not caused by a
change in enzyme activity
but must be due to some
other common feature,
shared by all CMT causing
mutations that might explain
the disease mechanism.
A variety of techniques were
used by the researchers to
visualise which parts of the
enzyme were exposed to the
outside world when made
from either the normal or
the mutated gene. The
results revealed that every
gene mutation studied
causes an opening up of the
resulting enzyme. Close
comparison by the
researchers showed that the
same part of the enzyme is
affected in all the disease
causing mutants.
By becoming more open,
possibly also allowing other
proteins to enter the space,
the mutants may gain a new
function that is toxic to
nerve cells, explaining why
CMT type 2D is inherited in a
dominant fashion.
The team is now
investigating several
candidate proteins that
might bind to this region
when exposed. Professor
Yang thinks this enzyme and
some other proteins may be
relatively unstable and can
be easily pushed into
another shape by different
types of mutations, an idea
that can be applied to many
other mutation-induced
human diseases including
MND where different
mutations on seven genes
are known to be disease
causing.
We mentioned in Aware a while
ago that a new collaborative
research project was being
developed between MND
Scotland and a team of social
researchers at Glasgow
University. The study hopes to
discover what care options and
services are available across
Scotland to people with MND
and their families and how
these are delivered to those
who need them. The study also
hopes to learn what users of
these services think about
them.
As the project is now moving
towards its second year we are
still desperately keen to talk to
people, carers and families
about how services change as
MND progresses. While we
mainly want to find out about
the health, social care and
support services that the person
with MND uses, we would also
want to talk to family members
about these.
We think this research is
important since no-one has
ever looked at how the
different services for people
with MND compare across
Scotland; and without this
information it is difficult to push
to have services improved.
If you think you can help with
this research, no matter where
you live in Scotland, please
contact Jo Ferrie at Glasgow
University on 0141 330 3175 or
by email at
[email protected], with
“MND Study” as the subject. If
you agree to take part in this
research the researchers will
ask if they can visit you and
your family for about an hour at
a time for up to four visits. For
further information contact Jo
directly or phone MND Scotland
and ask to speak to Bob Bestow
or Craig Stockton.
research
Help us to Help Others
Personal Stories
Life in the Final Chapter
In June you may have seen the
documentary on BBC2 featuring
writer, Terry Prachett, visiting the
Dignitas centre in Switzerland.
Pratchett, diagnosed with Alzheimer’s
Disease, was present when hotel
millionaire Peter Smedley who
suffered from MND, choose to end his
own life on camera at the centre.
Peter’s death proved shocking for
viewers and resulted in media and
social controversy.
The result of this was an opportunity
for people with MND to spread
further understanding of their illness
amongst the general public during
Awareness Week. Certain
newspapers were keen to cover the
personal stories of people with
Motor Neurone Disease who are
choosing to live with their illness as
opposed to those who are
considering suicide at Dignitas or
support the movement to legalise it
in Britain. Tom Rodger from
Wishaw suffers from MND, and is in
a similar condition to that of the late
Peter Smedley. Tom agreed to talk
to the Herald newspaper and give
them his outlook on life and the
challenges brought by his illness.
A former group health and safety
manager with Arnold Clark, Tom
was diagnosed in December 2009,
“It’s painful being on the inside of
my body looking out,” he says.
“I’ve got to live within the
limitations; I’m virtually trapped by
my body.” Tom says he would
never consider suicide, and worries
that if it were legalised, vulnerable
people might feel pressured to do
so, he would prefer to die in a
hospice, “I’ve made changes to my
house and I’ve looked ahead to
palliative care to make sure that
the route I’m going down is the
right one.” Tom has a wife, children
and grandchildren and is
determined to enjoy life to the full.
He has benefited from the support
of MND Scotland, with the Care
Team, and the Welfare and
Benefits Service, and this has
helped him and his family to be
less anxious about life in general,
and what lies ahead.
Excerpt and image from The
Herald newspaper used with kind
permission.
MND Scotland has a Counselling
Service for people with MND,
families, and carers. Call 0141
945 1077 for more information.
As an organisation, MND Scotland
neither supports nor opposes any
attempt to change the law
regarding assisted suicide
because we believe it is a matter
of individual conscience.
5
neurological voices
Neurological Voices
Training to Influence Your Own Local Health Service
‘Neurological Voices’ is a Scottish
Government funded project
currently underway at the
Neurological Alliance of Scotland.
The Neurological Voices training
programme will prepare people
with different neurological
conditions and their carers to get
involved in planning and
improving their local health
services. It’s a chance to give
something back and make a
positive difference for the future,
whether you have been satisfied
or have had problems with your
own care. It will also be an
enjoyable opportunity to share
experiences, express your
opinions and develop your
communication skills so you can
make a case that health
professionals will hear, loud and
clear.
Taster sessions, lasting around
two hours, will allow you to find
out whether the programme is
for you. The full course, lasting
three mornings and held over
two weeks, will be offered to
mixed groups that may include
people with MND, Parkinson’s,
epilepsy, MS, ataxia and
dystonia. Sessions will be lively
but paced and structured to take
individual support needs into
account.
Jan Anderson, who will be
running the courses, is a speech
and language therapist who has
lots of experience of helping
people develop confidence and
communication skills. She
believes we find our authentic
‘Voice’ and passion for speaking
up when we feel heard and
supported amongst peers. She is
excited about working with
mixed groups as this will help
6
people move beyond their
personal experience to speak up
about wider priorities.
‘It is no longer good
enough to simply do
things to people; a
modern healthcare
service must do things
with the people it
serves.’ (‘Patient Focus
and Public
Involvement’, 2000).
All ‘Voices’ initiatives have
developed out of a growing
understanding, over the past 10
years, that the NHS needs to
listen to patients to achieve best
results. We hear a lot nowadays
about ‘putting patients at the
centre’ and patients becoming
‘partners in care’. NHS Scotland
has made real efforts to find out
about patients’ experience and
this work is termed ‘Patient
Focus Public Involvement’ or
‘PFPI’. The ethos is neatly
summarised: ‘It is no longer good
enough to simply do things to
people; a modern healthcare
service must do things with the
people it serves.’ (‘Patient Focus
and Public Involvement’, 2000).
In addition, as you may know,
‘Clinical Standards for
Neurological Health Services’
were launched
by NHS Quality
Improvement
Scotland in
2010. The
Standards shine
a spotlight on
neurological
services and
emphasise the
quality of care that all patients
should receive on their way into
services, during investigations
and throughout treatment. They
highlight that services should be
safe, effective, timely, delivered
in the right place and equal
across Scotland. The Standards
offer a special opportunity for
anyone with a neurological
condition to get involved.
Jan has been meeting NHS staff
who are dedicated to delivering
on the Standards and improving
neurological services. Each local
NHS Board is developing its own
plan for improving services and
everywhere, patients and carers
will be involved in this process.
Jan will be offering Neurological
Voices training in partnership
with the NHS in selected areas
initially, including Ayrshire and
Arran, Dumfries and Galloway,
Forth Valley, Grampian and
Tayside. It is expected the
programme will roll out across all
of Scotland in due course.
If you would like to be informed
of dates for Neurological Voices
taster sessions in your area,
please contact Jan: Email:
Jan.anderson@scottishneurologic
al.org.uk, Mobile: 0770 318 5856
The Neurological Alliance of
Scotland, 15 Mansfield Place,
Edinburgh, EH3 6BB
A Blooming Awareness Sensation
Global MND Awareness Day
arrived again on the 21st of
June, and we began our 30th
Anniversary ‘Growing
Awareness of MND’ campaign
by distributing our Cornflower
seeds at Glasgow Central and
Edinburgh Waverley train
stations. The weather was
horrible but we hope our
altruistic effort brightened the
mood of commuters for the rest
of the day. Those who sow our
seeds will surely be satisfied
with the result, and will have
time to reflect upon our work
and the needs of people
affected by the illness, as they
see the plants grow and finally
bloom in late summer.
“I have to agree that
this is better than a
soggy leaflet. And a
much better way to
attract attention by
giving people
something they are
less likely to discard.
Well done MND
SCOTLAND.”
Papa Taylor on Facebook
We also managed
to make the
Beechgrove
Garden on BBC1,
where Jim McColl
planted our
Cornflower seeds
on camera during
the 1 minute
Handy Hints
section. Let’s hope
Jim soon gives
viewers the
opportunity to see
how our
Cornflowers have
come on. Seeds
were distributed
at the ‘Take That’ concert, at
Hampden Park Stadium in
Glasgow, and we met many
people who had been affected
by MND in one way or another
– they were keen to chat and
introduce us to friends. The
botanical theme of our
awareness raising was also
supported by Dobbies
Gardening Centres. Our
volunteers braved cold and wet
weather (usual for June), to
distribute information and
seeds to customers, and they
also raised money in to the
bargain.
Growing Awareness of MND
became a worldwide campaign
thanks to the American pilot,
Carol Ann Garrett who is
currently flying around the
world for the third time to raise
awareness of Motor Neurone
Disease. She will be distributing
our seeds in Europe, Asia, and
America before returning to
Florida.
“Cornflower seeds - a
genius publicity idea.
Happy 30th!”
Diabetes UK Scotland on Twitter
mnd awareness week 2011
MND Awareness Week 2011
The Sonic Boom Theatre
Company, in conjunction with
Strathclyde Theatre Group,
performed ‘No Time has Passed
in Hippo Land’, at the
Ramshorn Theatre. The play
focused on the relationship
amongst three estranged
siblings, brought together again
by their father’s Motor Neurone
Disease. We provided
information at the theatre, and
of course ensured that the
audience had access to our
freely available seeds.
It’s too late now to plant
Cornflower seeds and expect
them to flower this year.
However, according to Jim
McColl, you can plant them in
Autumn in time for next Spring.
So if you wish to be part of the
‘Growing Awareness of MND’
effort, then don’t hesitate to
get in touch. Contact Bryan
Carroll on 0141 945 1077 for
your own free packet of seeds.
7
fundraising
Edinburgh Marathon
On 22nd May, 52 of our supporters ran the Edinburgh Marathon, Half
Marathon, Hairy Haggis Team Relay and 10k. A huge thank you to
everyone who took part and helped raise an incredible total of more than
£40,000 for MND Scotland.
Not only that we now have a world record holder! Ewan Jack smashed
the previous record for running a marathon dressed as a doctor,
completing the race in an incredible 2 hours and 53 minutes. His friend,
Tony Beveridge, also ran the marathon…but dressed as a policeman –
which added an additional stone of weight.
Art Sale
On Saturday 21st May
Robert Taylor held an
Art Exhibition and
Sale in order to raise
funds
for
MND
Scotland, and raised
over £2000. More
than 40 local artists
and friends donated paintings and pottery for sale. In
addition 14 originals by Robert’s late wife Nancy
were sold.
Nancy and Robert’s daughter, Katrina, ran the
Edinburgh Half Marathon the next day and raised a
further £3300.
Busking and Ben Nevis
Stewart Ferguson and John Pearson busked for
a day in Braehead Shopping Centre, Glasgow
and raised almost £1000.
A few weeks later, Stewart climbed Ben Nevis
and is pictured at the summit wearing his MND
Scotland T-shirt.
Triathlon
Challenge
Alan Lamont is taking part in 4
triathlons to raise funds for MND
Scotland, finishing with the
Strathclyde Standard Triathlon on September 4th. This event
is a 1500m open water swim, 40k road bike and 10k run –
not bad for someone who only recently learned to swim!
Patchwork Fundraising
Many thanks to Irene
Ferguson and the
Dean Patchwork Group
who donated £650
which was raised from
a sale of their work.
Briggs Bar
Helen Colquhoun arranged a fundraiser at the
Briggs Bar, Bishopbriggs on 6th May. Also at the
event was Alan Trayner, Helen's son in law who
cycled from Glasgow to Edinburgh and back
again. In total £960 was raised.
A huge THANK YOU to everyon
MND Scotland Fundraising is on Facebook, Twitter and you can r
8
Ross Cunningham
ran the London
Marathon
on
Sunday 17th April,
and completed the
26 miles despite
being hampered by
a rugby injury
received only a few
weeks before. He
was cheered on by mum Brenda and sister Laura,
and was rewarded with a well deserved beer at
the end.
Boulevard
Fundraisers
Lorraine Sneddon, Robert
Hainey, John Colquhoun, Donna Cullen,
Douglas Eskdale and Scott Thompson (not
pictured) from Boulevard Ward, Leverndale
Hospital, raised £374 for the Fun Run at
Strathclyde Park.
fundraising
London
Marathon
Baker Hughes 10K
Thanks to everyone who
took part in the Baker
Hughes 10K on 22nd May.
Pictured are Sarah Gunn, Laura
Vance & Kirsty Wheeler at the
end of the race.
Alford Academy
Alford Academy 5th year pupils Nathan, Kiana &
Amber won £3000 for MND Scotland in the Youth
and Philanthropy Initiative (YPI), impressing the
judges with the passion in their presentation.
St Ambrose
High School
St
Ambrose
Young
Enterprise team “Jubilbee”
donated £200 from their
profits to MND Scotland,
making this two years in a
row that the school’s YE team have made a donation.
Team pictured Darren Wilson, Ryan Gorman & Rhianna Brown,
not pictured Charlotte Houston & Lauren Casey
Prestwick Sponsored
Walk
Dorothy Young organised a sponsored walk
from Prestwick to Troon (and beyond!) on 1st
May. Many thanks to everyone who took part
and raised a fantastic total of £1632.60.
One Night Stand
One Night Stand Function
Band held a dance at the Park
Hotel in Kilmarnock on
Saturday 28th May. Many thanks to Dan
Mann and the band for organising the night
and playing for free, raising over £3300 for
MND Scotland.
ne who has been raising funds.
read our weekly blog at http://mndsfundraising.wordpress.com/
9
the cornflower ball & machu picchu
The Cornflower Ball
On Friday 28th October, the
Cornflower Ball will be held at
the Crowne Plaza Hotel in
Glasgow, and promises to be an
extravaganza of socialising,
wining, dining and dancing. This
event aims to raise funds to
deliver our essential care and
information services, and help us
to fund research which may find
a cure for the condition.
There will be a wonderful range
of entertainment with music
provided by the fabulous Big
Vern ‘n’ the Shootahs, and a
prize auction and raffle. Until 1st
September tickets are available
at a special rate of £50 per
head including Drinks
Reception and Dinner, and
tables of 10 are available for
£500. After 1st September
tickets will be £55, so make
sure you book early!
Bookings can be made by
contacting the Fundraising
Department on 0141-9451077 or you can book online
at www.mndscotland.org.uk
Also, if anyone would be
interested in kindly donating
a prize for the raffle or
auction please get in touch.
Trek the Inca Trail to Machu
Picchu in 2012!
10
We're looking for 30 people to trek
the Inca Trail to Machu Picchu in
September 2012. The opportunity
to take part in this event with other
MND Scotland supporters and visit
this fantastic destination will
provide you with an unbelievable
experience which you will never
forget, and all for a great cause.
essential funds, and there has
never been a greater need for our
services. There are now over 400
people in Scotland living with MND.
This is the highest number ever
recorded and the demand for our
care and support services is
increasing. We need your help to
continue to deliver them.
This event will help us to raise
The minimum sponsorship required
to take part will be approximately
£3,750. There are loads of ways to
reach this target, and we will
provide full support for your
fundraising to help you reach it.
You can find out more information
about our Machu Picchu Trek by
contacting Sara Thomas in the
Fundraising Department on 0141945-1077.
Holyrood Park
4th September 2011
In our 30th Anniversary year, MND
Scotland is launching a Fun Run to
take place on 4th September at
Holyrood Park in Edinburgh.
The event starts at 10am and you
can walk, jog or run the 5km
course around the Arthur’s Seat.
It's a great way to spend a day for
families, friends, work colleagues,
schools or running clubs, and
everyone from individuals to large
groups are welcome to get
involved.
Your £10 entry fee covers our
costs in organising the Fun Run, so
every pound you raise in
sponsorship really does make a
difference. Whether its a few
pounds or thousands – every
penny you raise soon adds up. We
will provide sponsor forms and a
T-shirt to every entrant, and can
help you set up on online
sponsorship page at
www.justgiving.com/smnda. As a
way of recognising your efforts in
raising sponsorship, everyone who
raises £100 or more will receive a
commemorative award to mark
the invaluable contribution made
towards our services, and all
participants will receive a medal
for taking part.
There will be a number of stalls in
the main marquee including
refreshments, and we will also
have massage available for all
participants.
Entry forms and sponsor forms are
available from the Fundraising
Department, and you can also
register online at
www.mndscotland.org.uk. Please
get in touch if there is any way
we can help with your
fundraising.
Fun Run Volunteer Appeal
MND Scotland needs at least
60 volunteers on the day of
the Fun Run, to help for a
few hours with tasks such as
event marshalling, car park
management, handing out
goody bags, manning
tombola, homebaking and
raffle stalls.
We need at least 60 volunteers.
Volunteers will be needed
from 9.45am until
approximately 1.00pm and
will be provided with a tee shirt. Children aged over 11
years may assist if
accompanied by an adult.
fun run 2011
5km Fun Run
and Sponsored Walk
First Fun Run
of the Year
Our Fun Run at Strathclyde Park, in
May, was another huge success
with almost 600 participants raising
funds to help us deliver our
essential services. Our volunteers
helped to ensure it all went as
planned, and we feel that with the
help of more volunteers at
Edinburgh, it too will be another
wonderful day.
We’d like to thank everyone who
took part, and want to let you
know that we’ve already started
preparing for next year – so see
you there hopefully.
Special thanks to: Roy Elliott for the
photos, to our massage therapists,
all the volunteers who came along to
help with or run stalls, to the
volunteer marshals and sweeper,
Greggs, Stratiis, amp3, staff at
Strathclyde Park, volunteers from the
Red Cross, and MND Scotland staff.
You can help by sending us your
sponsor money, and hopefully
we’ll have raised another
tremendous total.
Call 0141 945 1077 and find
out more from our Volunteer
Development Officer, Dawn
Hamilton.
11
counselling services & voluteers
Counselling Services Update
Supporting Children
and Young People
More and more families want to
involve children and young
people in the process when
someone close to them is
seriously ill. With this in mind,
MND Scotland is building up a
range of resources to give to
family members to help
support them.
For example, we can provide a
workbook produced by the
MNDA aimed at 3 - 10 year olds
called “When someone close to
you has MND” which descibes in
terms appropriate to that age
group, what is happening to
their loved one.
We have had some very positive
feedback from this indeed. A 13
year old girl whose Gran is fairly
poorly with MND, used parts of
the book to tell her classmates
all about it! This may seem odd
– a 13 year old using material
for 3 to 10s, but the equivalent
resource which will be
appropriate for older children
and teenagers is still being
developed.
Help is available to allow
young people to express
there emotions when a
loved one is ill.
people trained in this, all of
whom attended the Grampian
Children’s Bereavement
Network (GCBN) launch. It may
take some time to have
reasonable cover for Scotland
with this service, but in the
meantime we continue
gathering resources to provide
to clients and families.
At present we are piloting the
use of some “What I Need”
cards sent to us by the
Children’s Bereavement
Network which could help older
children and young people
articulate what they think might
help them if they are having
difficulties when someone
important to them is ill.
Although we have not, as yet,
set up a service where our
volunteers work directly with
children and young people
affected by MND, we have three
MND Scotland Counsellor, Margaret
McKinnon at the GCBN Conference
Volunteers Needed!
Complementary Therapy
Programme
The complementary therapy
programme has been running
for over a year and a half and
in order to expand this service
we would like to increase the
number of therapists we have.
The therapies on offer include
Massage, Aromatherapy,
Indian Head Massage, Reiki
and Reflexology. Treatments of
up to 10 sessions are carried
out in the client’s own home
and the client could be either
the person with MND or their
carer. Sessions are arranged
12
according to both the
therapist’s and the client’s
availability and aren’t
necessarily on a weekly basis.
Therapists will receive MND
awareness training and the
opportunity to undertake
further training if desired.
Travel expenses of 45p per
mile or public transport rates
will be paid.
The programme is currently
run in Central Scotland,
Lanarkshire, Glasgow,
Aberdeenshire, Edinburgh and
Ayrshire. If you are a qualified
therapist in any of the above
areas with your own insurance
then we would love to hear
from you.
Therapists will receive
MND Awareness
training.
If you are able to volunteer
for any of the above activities
or would like further
information, please contact
Dawn Hamilton on 0141 945
1077 or email
[email protected]
A new support group is being
formed in the Edinburgh/Lothian
area and the likely venue is the
Northfield House Hotel,
Edinburgh EH16 6UD, starting
possibly late September or early
October 2011.
This group will be the seventh
group to be established in
Scotland, the others take place in
Aberdeen, Ayrshire, Forth Valley,
Glasgow, Lanarkshire and
Renfrewshire. The groups are
open to people with MND, their
families and previous carers in a
very informal social gathering
over either a small buffet or tea
and coffee. The sessions are free
to attend and provide a good
opportunity for people to chat
and support each other. It is
anticipated that the groups might
have occasional speakers to
come in and talk to them about
relevant topics.
If you would like to attend any
of the sessions or would like
further information please
contact Dawn Hamilton on
0141 945 1077 or email
[email protected]
Support Group Dates for 2011:
Aberdeen – Rubislaw Church
Centre, 1 Beaconsfield Place,
Aberdeen. Sessions vary with one
session being either 2pm or 7pm
Monday 19 September 2011 at 7pm
Ayrshire – The Gailes Hotel,
Marine Drive, Irvine at 12.15pm
Wednesday 21 September
Wednesday 16 November
Forth Valley – The Grange
Manor, Glensburgh Road,
Grangemouth. Sessions vary with
one session being either
12.30pm or 6.30pm
Thursday 15 September at 12.30pm
Glasgow – Ibrox Football
Stadium, 150 Edmiston Drive,
Glasgow at 6.15pm
Thursday 1 September
Lanarkshire - The Bentley Hotel,
19 High Road, Motherwell at
12.15pm
Wednesday 7 September 2011
Wednesday 9 November 2011
Renfrewshire – Accord Hospice,
7 Morton Avenue, Paisley at 7.30pm
Monday 12 September
Monday 10 October
Monday 14 November
Monday 12 December
library services and support groups
Support Groups
Books Online And in Our Library
User guides
Radar, the disability rights
people, have just published the
2011 edition of the National Key
Scheme (NKS) Guide. This
guidebook lists almost 9000 NKS
accessible toilets for disabled
people and costs £12.99. The
guide is also available as a
Smartphone app from the Apple
store for £4.99
www.apple.com/iphone/feature
s/app-store.html Using the app
lets you search by town,
location, or post-code, to locate
your nearest facility and get
directions by road, bus or on
foot. Blackberry and Android
versions are due out soon. You
can purchase a key from Radar
for about £4.
Radar has also just published the
2011 edition of ‘If only I’d
known that … living with illhealth, injury or disability’. This
guidebook /directory covers
areas such as accommodation,
aids and equipment, education
and employment, discrimination,
health and social services,
transport, sport and leisure,
benefits and personal
relationships, it gives all the
information needed to 'start
the ball rolling' and the
signposts to gain more
detailed knowledge as
required.
enjoyed and would
recommend to others with
MND? Can you also tell us of
any travel insurance
companies that you would
recommend? If you have, we
would like to hear from you.
Please contact the information
officer at
[email protected]
We need your help.
Have you been anywhere
in Britain or abroad which you
13
branch activity
Branch Activity
Edinburgh Branch
Edinburgh Branch members
Shiela Clarke, Margaret McGrath,
Alma Allan and volunteer Allison
Doig had a succesful day at
‘Altogether In The Park’ at
Sighthill Park in Edinburgh on the
4th of June. The MND Scotland
bric-a-brac stall raised a
worthwhile £183, and the final
figure on the day was £213 after
a generous donation from longtime supporter, Anne Callaghan.
The Fairlie’s of Kirkettle Farm
Roslin, agreed to have a
collection in aid of MND at their
daughter Lynne's wedding on
the 4th of June, and a grand
total of £103.00 was raised.
Mrs Kaye MacAskill, Joanna
Casson, Willie Downs and
Jasmine Lauchlan.
A can collection has been
organised for Sainsbury Stores at
Cameron Toll in Edinburgh for
the 30th July 2011, and a stand
has also been confirmed for the
North Berwick Highland Games,
it will be held on the 6th August
2011, and Edinburgh Branch will
hold a Tombola stall. This event
normally attracts around 15,000
people so we are hoping the
weather will be kind to us.
Central Branch
Branch member Sheena Downs
receiving the collecting can from
Mrs Nancy Fairlie.
North Berwick High School chose
MND Scotland as one of their
nominated charities for the year
2010/11, and a cheque for an
amazing £1450.00 was
presented to Branch Chairman,
Willie Downes, on the 8th of
June 2011 by Head Girls Joanna
Casson and Jasmine Lauchlan.
Grateful thanks must go to all pupils
and staff at the school for their
efforts and especially to charity
convener Mrs Kaye MacAskill.
14
Former Central Branch Chairperson,
Ann Kerr, said, “it seems no time
since I was writing for the last
Aware, but that’s what happens
when you are busy.” Summer is
not usually a busy time for Central
Branch as people are on holiday
and it is difficult to arrange dates
suitable to everyone, but they had
a very successful Strawberry Tea in
Mary Steven's beautiful garden.
They were very fortunate with the
weather, having sunshine until 15
minutes before the end, then the
heavens opened and the
remaining customers fled for
shelter. That is the first sign of rain
during the annual event since
2005. Rain or not, this was the
most successful monetary year
raising £827. Well done everyone,
and a big thank you to all who
made the day a resounding
success.
The Branch is currently busy
arranging a bingo night in the
Mahratta, Grangemouth on
Tuesday the 2nd of August.
Supporters have come up trumps
again with prizes, when you
consider that 32 bingo prizes,15
booze raffle prizes and 35
smaller prizes are needed, Ann
said, “when the bingo host told
us this, the looks between us
were unbelievable - obviously
everyone was thinking the
same. We were on the scrounge
and lo and behold we have 101
prizes.” It is a testimony to the
determination of Branch
members and all its supporters.
The Ladies' Lunch in the Grange
Manor Hotel, Grangemouth, will
once again take place at the
Grange Manor Hotel,
Grangemouth, on the 25th of
September. Tickets are £20, and
the Branch is still looking for a
few rather nice prizes, but Ann
Kerr is sure that these will
materialise before the day.
The Jewellery Sale Evening in
Falkirk Carmuirs Golf Club,
Camelon, will take place on
Thursday the 6th of October. The
items are locally made by a very
talented lady, to give jobs to
young people with learning
difficulties. The Branch receives
profits from the sales, minus
payments to the young people
involved, so two really
worthwhile charities are
benefiting, please come along
and support us.
Tickets and details of the events
can be given by contacting Ann
Kerr on 01324 620 756 or head
office in Glasgow on 0141 945
1077.
Lang Break Caravan
If you are feeling stressed out and
tired it may be time for a holiday
- MND Scotland can help. Why
not book a break at our Lang
Break Caravan and enjoy the
attractions of the beautiful East
coast of Scotland? The caravan is
situated in the Craigtoun
Meadows Holiday Park which
holds a ‘Scottish Tourist Board 5
Star Award’ and has twice been
voted the ‘AA’s Best Scottish
Campsite’. Craigtoun Meadows
has a wide range of amenities
and is only one and a half miles
from the centre of St Andrews.
The campsite is an ideal starting
point to explore the surrounding
villages, coastal towns and
beaches.
You may be concerned that the
caravan will not suit your physical
needs. However, it is adapted for
people with disabilities thanks to
its accessible layout and range of
facilities.
Prices for 2011
People Affected by MND
Daily Rate £45.00
Weekly Rate (7 days) £250.00
Standard
People not Affected by MND
Daily Rate £55.00
Weekly Rate (7 days) £325.00
Contact Mairi Hughes at MND
Scotland on 0141 945 1077 for
details of available vacancies.
a late summer break
A Late Summer Break
A gift in your Will can
make a real difference
Almost a quarter of our funding comes from gifts left in people’s
Wills’. These gifts play a huge part in ensuring we can continue to
deliver our essential services, such as our Care Team, within Scotland.
Legacies can also enable us to invest more money in research
which we hope will one day find a cure for MND.
Any gift in your Will to MND Scotland can help us plan for the
future and is free of inheritance tax.
A legacy can give hope for the future.
For more information contact Iain McWhirter on 0141 945 1077,
or email [email protected]
Supporting people
affected by
Motor Neurone Disease
15
make a donation
We provide a wide range of services for
the MND community and health and
social care professionals in Scotland.
• Care Team Service and Specialist Equipment Loan
• Information and Education Services
• Local Support Groups and Branches
• Emotional Support for People Affected by MND
• Funding for research to find a cause and cure for Motor Neurone Disease
MND Scotland relies almost entirely on fundraising
and donations to provide our services
For further information contact:
Tel. 0141 945 1077 Email. [email protected]
Website. www.mndscotland.org.uk
I would like further information about MND & MND Scotland (please tick)
GIFT AID
• I enclose a donation of £
Please treat this as a Gift Aid donation
To make a regular monthly donation, or donate by
credit/debit card, please telephone 0141 945 1077.
Name
Using Gift Aid means that for every pound you give, we
get an extra 25 pence from the Inland Revenue, helping
your donation go further.
If you are a UK taxpayer and want to take advantage of
Gift Aid, please confirm the statement below by ticking
the check box provided. You must pay income or capital
gains tax at least equal to the amount we will claim in
the tax year.
Your details will be added to our database, and we may write
to you about MND Scotland.
We do not pass your details to any third party.
Please tick this box if you do not wish to receive further mailings.
Address
Postcode
Email
Scottish Charity Number SC 002662. Company Number SC 217735. Registered in Scotland.
MND Scotland is the only charity funding research and providing care and information for people affected by
Motor Neurone Disease in Scotland.
Post To:
MND Scotland
76 Firhill Road
Glasgow
G20 7BA