Cornflower Ball

aware
Winter 2009 : Issue 8
Cornflower Ball
Evening of Celebration
inside this aware:
Central Branch Ladies’ Lunch • Help Scientific Research
• Company Support • Thank You to Volunteers
calendar of events
2010 events:
March:
Friday 12th March
Sponsored Firewalk, Falkirk
Stadium
In association with firewalking
experts BLAZE, this is your chance
to do something amazing! This
includes a training session which
will give you the confidence to
complete this incredible
challenge and walk across 20ft of
hot coals! Please contact the
Fundraising Department for a
registration form. The cost is £25
to register and we ask that you
pledge to raise £150. Please note
this event is for over 18s only.
Friday 26th March
“Question of Sport”, Inchyra
Grange Hotel, Polmont
A fantastic evening’s
entertainment featuring sporting
celebrities. Tickets are £35 and
tables of ten are available.
May:
Sunday 16th May
Annual Fun Run, Strathclyde
Country Park
Get sponsored to walk, jog or run
either the 4 or 6 mile course – T
shirt and medal for all entrants.
Sunday 23rd May
Edinburgh Marathon and Hairy
Haggis Team Relay
The Edinburgh Marathon can be
run as a full marathon, or you
can take part as part of a four
person relay team! We have
guaranteed places available –
please contact the Fundraising
Department for details.
June:
21st- 27th June
Global MND Awareness Week
If you can distribute leaflets, put
up posters, or organise a local
awareness raising event then
please contact us.
October:
Saturday 2nd October
MND Scotland Conference,
Stirling
Our annual Conference and AGM.
2
Everyone with an interest in MND
is welcome to attend.
Sunday 3rd October
Scottish Kilomathon
The Scotland Kilomathon is run
over a distance of 26.2
kilometres, starting and finishing
in the Royal Highland Centre
Ingliston, and going over the
spectacular Forth Road Bridge.
NEW FOR 2010
24th September - 3rd October
Trek Peru - The Lost City of the
Incas, Machu Picchu
Explore ancient Peruvian culture
and visit the legendary Machu
Picchu, one of the world’s most
important archaeological
discoveries.
8th - 17th October
Trek China - The Great Wall
Visit the Great Wall of China, one
of the Seven Wonders of the
World.
17th - 26th September
15th - 24th October
Trek Kilimanjaro
Climb the highest mountain in
Africa! If the Red Nose celebrities
can do it, so can you.
Please contact the Fundraising
Department for details, or visit
www.mndscotland.org.uk for
more information.
Sponsored
Firewalk,
Falkirk Stadium,
Friday
12th March
Your chance to
do something
amazing!
£25 to register, pledge to raise
£150. Please note this event is
for over 18s only.
Contact Fundraising on
0141 945 1077 to register.
Edinburgh Marathon and
Hairy Haggis Team Relay,
Sunday 23rd May
Run a full marathon, or as part
of a four person relay team.
We have guaranteed places
available.
Contact Fundraising on 0141
945 1077
MND Scotland Staff
Craig Stockton • Chief Executive
email: [email protected]
Iain McWhirter • Fundraising Manager
email: [email protected]
Iain Smith • Financial Controller
email: [email protected]
Virginia Hewitt • Trust Fundraiser
email: [email protected]
John Brown • Equipment Co-ordinator
email: [email protected]
Bryan Carroll • Communications Officer
email: [email protected]
Lynn Black • Information Officer
email: [email protected]
Mairi Hughes • Office Administrator
email: [email protected]
Christine Crawford • Administrative Assistant
email: [email protected]
Dawn Hamilton • Volunteer Development Officer
email: [email protected]
Lynnette Scott • Counselling Service Co-ordinator
email: [email protected]
Karen Thomson • Volunteer Co-ordinator
(Befriending)
email: [email protected]
Robert Bestow • Education Officer
email: [email protected]
Vicki Cahill • Welfare and Benefits Officer
email: [email protected]
MND Scotland, 76 Firhill Road, Glasgow,
G20 7BA. Tel: 0141 945 1077,
email: [email protected]
website: www.mndscotland.org.uk
We had hoped that the new Clinical Standards for
Neurological Health Services would have been
published by now; however at the time of
writing we are still waiting. We have been
informed by NHS Quality Improvement Scotland
that there will be an official launch of the
standards in January 2010, so our hope is to have
an article about them in the first Aware next
year.
As you will have seen by the front cover, we
recently held our annual Cornflower Ball. This
event is now a firm favourite, with more than
350 people enjoying a night of good food, good
company and good music whilst raising both
awareness and money for MND Scotland. For the
first time we introduced an electronic silent
auction which allowed people to bid on the
auction items at anytime during the evening
until the cut - off time. The feedback that we
have received about the night has all been very
positive with people already wishing to book
their tickets for next year. See the pictures on
pp10 -11! Also inside this edition of Aware you
can read the moving story of one young boy’s
reflection on his granddad being diagnosed with
Motor Neurone Disease.
As usual there is a lot to read in this edition of
Aware. Indeed we cannot always put all our
news and articles into this one publication so, we
plan to introduce a new, interactive, electronic
newsletter early next year which will give those
who wish to receive it, more information on
what is happening in the world of MND. This
new electronic newsletter does not replace
Aware but rather gives additional and new
information in between the publication of each
edition of Aware. If you would like to receive
the new electronic newsletter, you can register
on our website at www.mndscotland.org.uk.
I hope you enjoy this
edition of Aware and in
closing may I thank you
for your support over the
last year and wish you
and your family all the
best for 2010.
Craig W F Stockton,
Chief Executive
Index
BRANCH UPDATES
________________4
-5
Highlights of MND Scotland branch activity in Central
Scotland, Dumfriesshire, and Edinburgh and the Lothians.
CENTRAL BRANCH
LADIES’ LUNCH AND
DENNIS CANAVAN’S
AUTOBIOGRAPHY ____________________5
Inspiration at the ninth Annual Ladies’ Lunch in
Grangemouth, Dennis Canavan’s kind gift of profits from
sales of his autobiography.
RESEARCH
____________________________6
A study has increased leg function in paralysed rats;
participate in future research to investigate the effect of
MND upon behaviour.
PERSONAL STORY
____________________7
The feelings of a young member of the MND community.
FUNDRAISING
Chief Executive’s message • index
Chief
Executive’s
Message
______________________8-9
Discover the diverse ways that supporters have raised
funds in recent months.
CORNFLOWER BALL ______________10-11
Get a picture of the celebration and entertainment
enjoyed by supporters at our flagship event of the year.
COMPANY SUPPORT
________________12
Learn more about the companies who have chosen MND
Scotland as a worthy cause during 2009.
VOLUNTEERING, MND
AND SAFE EATING __________________13
Revisit the volunteer activity of 2009, Glasgow Branch
formation progress, and take the opportunity to learn
safe eating methods at the next Glasgow Support Group
meeting.
STAFF NEWS
________________________14
New staff say hello, and a valued member of our care
team gives special thanks.
FREE TICKETS AT
FIRHILL STADIUM ____________________15
Partick Thistle Football Club show their support.
MND Scotland tel. 0141 945 1077 email. [email protected] website. www.mndscotland.org.uk
3
branch updates
Branch Updates
Edinburgh
and Lothian Branch
A Branch open day is in the
pipeline for Spring 2010. All
MND supporters in the local
area are welcome. This is an
opportunity to learn about the
role of the Branch and ways to
contribute to its efforts. The
Edinburgh Marathon will take
place on Sunday 23rd May
2010 - are you available to
help man hydration stations?
Marathon organisers will offer
£15 per volunteer so your
support will also be a financial
bonus.
Local can collections continue
to be popular. The most recent
at Morrisons in Edinburgh
raised £400 and applications
for further collections have
been sent to a dozen stores in
the local area. The North
Berwick Car Boot Sale in
September raised over £120.
Branch Secretary Willie Downs
would like to thank Branch
member Angus Paton who
donated £10 for the pitch fee.
Almost £500 was raised at the
North Berwick Highland
Games. The Branch stall was
visited by Lord and Lady James
Douglas - Hamilton. Both
participated in the tombola
and a DVD was won by
Lady Douglas - Hamilton.
Dumfries Branch
Central Branch
Gretna clothing outlet, Klass
Collections, raised £573 at a
fundraising evening on
Thursday 15th October by
donating 10% of all shop
sales. Shop manager Judith
Millican became involved
through word of mouth and
her friendship with Allan Knox
of O’Brien’s, the nearby coffee
shop. Allan lost his uncle to
MND and raffled a teddy bear
named Albert after his loved
one, raising £80 at the event.
Francis McAdam from
Dumfries Branch was present
at their cheque presentation
to offer thanks on behalf of
MND Scotland.
The annual Christmas card sale
took place at the Albert Hall in
Stirling. Card sales, a lucky dip
and sale of donated jewellery
all contributed to the total
raised. We’ll update you
further about the success of
the day in the next edition of
Aware.
Fundraising Craft Fairs
regularly take place in the
Dumfries area. In the next
edition of Aware, we will
report back on fairs at
Kirkpatrick Fleming Village Hall
and Saint Columba’s School in
Annan. Dumfries Branch
invites you to get in touch if
you feel you can add to local
support in similar ways.
Contact Francis McAdam on
01576 300 316.
Preparations for the Central
Branch “Question of Sport”
evening are making progress.
Invitations sent out to a
number of celebrities have so
far been accepted by our
Patron and Scottish Rugby
Internationalist, Scott Hastings,
and former Dunfermline
Athletic Manager, Jim
Leishman. Over 300 tickets at
£35 per person are to be sold
and bookings for tables of ten
are welcome. If you wish to
enjoy this evening at the
Inchyra Hotel, Polmont on
Friday 20th March, contact
Ann Kerr at Central Branch on
01324 620 756.
Contact Willie Downs on
0131 258 6653 for further
information about Branch
efforts and ways to get
involved.
Willie Downs (left) with Lord James
Douglas-Hamilton (right) at North
Berwick Highland Games.
4
Central Branch members
would like to offer their
thanks to Irene Anderson who
organised a fundraising
collection at the funeral of
Peter, her husband. The total
raised came to £475 and Irene
is now a member of the
Branch.
Central Branch Ladies’ Lunch
Central Branch had its annual Ladies’ Lunch on
Sunday 20th September at the Grange Manor
Hotel in Grangemouth. It was the ninth lunch and
the most successful and popular so far. The
Branch achieved its fundraising target of £2,500
thanks to the 100 guests who attended on the
day. The official speaker was Christina McKelvie
MSP. Christina, one of our most active Patrons,
gave a thought provoking talk regarding her
upbringing in Easterhouse and her childhood
determination to be a successful adult.
She had a very enjoyable day: “I was delighted
to be invited to attend the Ladies’ Lunch again
this year, said Christina. “Once again, I was
bowled over by the energy and commitment that
I encountered. It was so inspiring to talk to
women who, despite often having considerable
caring responsibilities or having lost loved ones
to the disease, are still driven by a desire to
improve the lives of all people with motor
neurone disease and fund MND Scotland.”
Christina’s father had motor neurone disease, so
she is well aware of the care difficulties that
currently exist through the NHS: “I was struck by
the number of people who still struggle with the
same kinds of delays in accessing support and
adaptations that my own family experienced
when my father had MND over two decades
ago”.
Christina McKelvie (left) with Ann Kerr (right)
Following the Ladies’ Lunch, Christina put down
questions in Parliament to the Scottish Health
Secretary and was pleased to learn that NHS
Quality Improvement Scotland is developing
generic clinical standards for neurological
conditions which include standards specific to
Motor Neurone Disease, focusing on the delivery
of specialist services, diagnosis of MND and
condition management. Christina has promised
that once standards are finalised, she’ll back our
commitment to achieving the standards of
treatment and care that people with MND and
their carers are entitled to.
branch event • autobiography
Branch Event
Ann Kerr, Chairperson of Central Branch would
like to thank everyone who made this year’s
Ladies’ Lunch such a successful event and
Christina McKelvie for her attendance and
emotive talk on the day.
“I was bowled over by the energy and
commitment that I encountered.”
Christina McKelvie MSP
Dennis Canavan’s Autobiography
Former politician Dennis Canavan has written a frank and fascinating
autobiography ‘Let the People Decide’. Throughout his career, this father of five
never flinched from challenge or controversy. His personal life has seen
tragedy, with the loss of one son to skin cancer, another to a brain tumour and
his eldest son to motor neurone disease.
Dennis is a generous supporter of MND Scotland and is kindly donating 20%
of profits from the sale of every copy purchased by supporters who call 0845
370 0067 and quote reference LTP9 (rrp £16.99, hbk). All major credit and
debit cards accepted, free p+p in the UK, and delivery is 3-5 working days.
Let the People Decide: The Autobiography of Dennis Canavan, ISBN
978 1 8415 8839 1 £16.99 hbk.
5
research
Research
Experimental Treatment Bridges Spinal Damage in Rats
The magazine ‘New Scientist’
reports that a team at the
University of Zurich, under the
leadership of neurobiologist
Grégoire Courtine, are working
on a wireless implant which
would be inserted into the
spine below an injury to deliver
electrical pulses to target
neurons and return some
function to legs paralysed by
spinal cord damage. The spinal
cord turns signals of intent from
the brain into signals that
propel muscles into motion.
Damage to the spine can block
these messages. But networks
of neurons known as central
pattern generators (CPGs),
found in the spinal cords of rats
and mice, can trigger
movement without the help of
the brain. These CPGs can be
stimulated electrically or with
chemicals that mimic various
neurotransmitters. If humans
also have CPGs, a similar
combination of treatments
might restore lost movement
where the lower motor
neurones are still functional.
In past experiments, giving rats
these treatments separately
induced rhythmic hind-leg
movements, but the animals
could not support their body
weight. To see if combining the
two treatments might do the
trick, Courtine and his
colleagues injected paralysed
rats with drugs, including one
that mimics the effect of the
neurotransmitter serotonin, and
applied steady bursts of
electricity to their spinal cords,
via electrodes on the surface of
the skin. This enabled the
animals to walk, sprint, step
sideways and jog backwards,
and crucially, after two months’
training, they could bear their
own weight. It is not clear why
the treatments work so well in
tandem, but Courtine suggests
that the drugs somehow prime
the CPGs for electrical
activation. “Combining the two
created an exquisite synergy,”
he says. The trained rats could
also respond swiftly to changes
in pace and direction on the
treadmill. What is most amazing
is that rats with severed spinal
cords can sprint without regrowing the nerves between
the injury and the brain, raising
the prospect of a treatment for
people with injured spines.
The rats did not recover their
sense of balance, though, and
needed the help of a robotic
arm to run. People receiving the
treatment in future might use a
walking frame. Mark Bacon,
head of research at Spinal
Research in Guildford, UK, says
this is an important piece of
research, but that it is not clear
whether it will work in humans.
Help Scientific Research
MND Scotland is funding a
number of PhD studentships to
encourage an interest in MND
amongst young researchers.
One research group at the
University of Edinburgh, under
the supervision of Dr Sharon
Abrahams and Dr Thomas Bak,
are investigating whether
MND causes subtle changes in
behaviour, thinking and
language, and are looking for
volunteers to take part in their
6
studies. Participation involves
an interview and in some
studies a brain scan. The
studies need both people with
MND and a group of healthy
volunteers without MND for
comparison.
For further information about
how you can help in this
research, whether or not you
have MND, please contact
Dr Sharon Abrahams,
Department of Psychology,
The School of Philosophy,
Psychology and Language
Science, The University of
Edinburgh, 7 George
Square, Edinburgh, EH8 9JZ,
email: [email protected],
tel: 0131 651 5019.
We recently received a short essay from a boy named Sean. His life
changed dramatically when one of his closest family members was
diagnosed with MND. Here is his story:
When I was a little boy I used
to help granddad in the
garden. My favourite
memories are when we were
laughing and having fun, as
he pushed me around in his
wheelbarrow. Granddad and I
have always been very close.
He understood me and was
there when I needed time to
talk. Things began to change
3 years ago when he was
diagnosed with motor
neurone disease. It’s been
very difficult for me and
everyone who loves him since
then.
The first symptoms became
noticeable when granddad
developed a stutter. As his
MND progressed I had
difficulty understanding him.
He was my pal and
I was devastated
when it became
more awkward to
have our usual
chats. Granddad
used to sing in a
band, he was
always grinning and
enjoyed spending
time with friends
and family. He now
has to communicate
with a machine and
types very slowly.
This can be very
frustrating for everyone and I
often notice that he is left out
of conversations these days.
Granddad soon began to find
it tiring to walk, and relied on
a Zimmer frame to get
around. He was once a strong
and fit man, but he is now so
disabled he has to use a
wheelchair. He used to be
able to drive my sister,
Hannah, and I around when
we visited him. It’s really
annoying because all he
seems able to do is sit and
watch the day go by.
talking and he told me with
his light-writer that he still
feels happy. Granddad said,
“When I dream every night,
I’m on the beach with you and
Hannah. We’re splashing on
the shore and having lots of
fun.” My granddad is a great
man and I now realise that no
matter how MND affects him,
his memories will still make
him smile on the inside.
personal story
Granddad’s Smile
MND Scotland has a goal to
serve everyone affected by
motor neurone disease. This
includes partners, family
members and carers in
addition to people with MND.
We can lend a hand in a
number of ways including,
providing information,
financial advice, and
counselling. If you feel that
you may need some support
please contact us on 0141 945
1077 and we will do our best
to help.
I used to get upset when I
saw him in his wheelchair
although I now feel a bit
better about it. We were
“He was my pal and I was
devastated when it became
more awkward to have our
usual chats.”
7
fundraising
Kilimanjaro Ascent
Mark O’Sullivan reached the summit of Mount Kilimanjaro on 22nd
October, and raised over £4,500 in sponsorship. He dedicated this
achievement to his Mum, who sadly passed away in February this
year aged just 65, eight months after being diagnosed with Motor
Neurone Disease.
Kilimanjaro
Mark O’Sullivan
Glasgow Women’s 10K
On 10th May, 12,000 runners took to the streets of Glasgow for this
annual event, and MND Scotland was once again well represented by
our supporters. Stephanie Semple and Jay Jaconelli raised over £1,000
by running in memory of James Jaconelli who died last year.
Williamwood
Golf Day
Stephanie Se
mple, Glasgo
w Womens 10
k
Ben Lomond
Paul McGregor recently
16 staff, colleagues, and friends
organised a fundraising
from Strathclyde Police raised
event at Williamwood
£1159 by undertaking a sponsored
Golf Club to raise vital
climb of Ben Lomond on 24th
funds for MND Scotland.
September – 1 month later than
The event took place on
planned due to the Scottish
Golf cheque presentation
21st August and was a
weather!
great success. It was
Thank y
attended by 68 keen golfers and
raised an impressive £4000, which
climbed, c
exceeded Paul’s expectations. Paul
which he
is planning to climb Mount
Kilimanjaro in Africa next year,
e Police
alongside his friend John Bellshaw,
Strathclyd
who has been a keen fundraiser for
MND Scotland for many years: “John
and myself are really looking
forward to our trek - it will be an
amazing experience.”
Ryan and Jordan McKenna
have been fundraising to show
support to their friend Robert Paulley
who was diagnosed late last year with
MND. The brothers took part in the Great
Scottish Run, then held a fancy dress
Halloween party and have raised a
fantastic total of £3,400 so far. Ryan said
“Robert has gone about his unfortunate
news with dignity, positivity and very
little self-pity. It’s an honour to be his
n
wee
Hallo
ley,
Robert Paul
mate, and to have him as my best man
Halloween
during my wedding on May 2010.”
Halloween
Fundraising Night
8
fundraising
London Marathon 2009
Jenny Leitch, our first ever official London Marathon runner, has
completed her fundraising and presented a cheque for £16,974.16 to
Ann Callahan of the Edinburgh Branch at their recent meeting.
Congratulations and thanks to Jenny for such a tremendous
achievement.
Cumbrae
Cycle 2009
Jenny Leitch
175 cyclists, walkers and runners
took part in the Annual Cumbrae
Cycle on 4th October. Many
thanks to Mary McKee for
organising the event, and the
total amount raised will feature in
the next edition of ‘Aware’.
Cumbrae Cycle
Great Scottish Run
18 people took part on our behalf in the Great Scottish Run
10k and half marathon on 6th September. Sponsorship money
continues to be received, and we are really grateful to
everyone who braved a cold, windy and wet Glasgow to raise
funds.
Neil Ross, Great Scottish Run
you to everyone who has run, walked,
ycled or done anything to raise the funds
lp us make a real difference to people in
Scotland living with MND.
Corstorphine Bowling Club
The ladies of Corstorphine Bowling Club held a ‘Blue Fancy Hat’
fundraising day during the summer. Many thanks to Vicky Page for nominating
MND Scotland as the charity to receive the £800 which was raised.
Corsto
rphine
Bowlin
g Club
Tribute Night
A tribute night in memory of Emma Berry Goodman of Larkhall, who
was the youngest person in Britain to have MND, was held at Larkhall
Leisure Centre on August 28. One of her closest friends, Simon
Corbett, organised the event which raised a magnificent £1599.
Emma’s dad Ross had promised his daughter that he would run a
marathon before he was 40, so started by taking part in the Great
Scottish Run Half Marathon. Never one to do things by half, he also
completed the 50 mile Edinburgh – Glasgow cycle ride as a “cool
down” event the following weekend!
Tribute Night
9
the cornflower ball 30th October 2009
£35,000 raised
Next Cornflower Ball:
29 October, 2010
ht ”
“What a great nig
10
had a
“All of my guests
tremendou s night ”
“The night ran
to perfection,
the food
great,
entertainment
first class and
more
importantly
awareness
was raised”
the cornflower ball 30th October 2009
“The B
a l l of t
he yea r
!”
“I’m just sorry it’s another
whole year until we do it again!”
Photos courtesy of Max Blinkhorn. Copies of all of the photographs are available, please contact Max at [email protected]
Prints are available for £5.00, and electronic copies for £3.00.
11
company support
Company Support
The support of companies can
be invaluable to MND
Scotland, as these
partnerships can result in both
funds and awareness being
raised. We believe that it is
important to work in
partnership with our corporate
supporters and that these
relationships benefit
everyone. By making a
donation or sponsoring an
event or service, whether it’s
a riser/recliner chair or the
Cornflower Ball, companies
can make a real difference.
We welcome the opportunity
to establish long-term
relationships whether as
Charity of the Year or in any
other way.
In 2009 we have been
fortunate to have received the
support of a number of
companies who have helped
in different ways.
The Sainsbury’s superstore at
Darnley, Glasgow has adopted
MND Scotland as their charity
of the year in 2009. They have
held a range of fundraising
activities including bag packs,
collections, and a sponsored
cycle around Cumbrae, and
we have benefited greatly
from the exposure this has
given to their customers.
MND Scotland are also
delighted that CTN, an
outstanding communications
12
consultancy and media hub,
has chosen to support us as
their Charity of the Year in
2009. Motor neurone disease
is a lesser known condition,
and we believe that CTN can
help us develop new methods
of communicating our
messages and information to
a diverse audience. A number
of CTN staff have also helped
raise over £11,000 by taking
part in the Edinburgh
Marathon.
Irvine Housing Association
also adopted MND Scotland as
their charity of the year, and
raised £4,000 throughout the
year. They also helped raise
awareness by sending their
contacts and supporters an
electronic Christmas card
which featured information
about the charity.
Advanced MP3 Players, the
UK’s MP3 experts, handed
over a cheque for £25,000 to
MND Scotland after staging
their third annual Charity
Trackday at Knockhill Race
circuit in Fife. Money was
raised by people donating
cash for a drive round the
racetrack in one of more than
45 deluxe sports cars,
including Lotus, Ferraris,
Lamborghinis and Caterhams.
The charity fund was also
boosted by generous
contributions from Advanced
MP3 Players suppliers and an
auction at the after party. One
supplier of Advanced MP3
Players, which has a store
with Edinburgh’s Ocean
Terminal shopping centre,
donated 300 Xmini II
speakers, boosting the fund
by £6000. Managing Director
Andrew Gordon said: “To raise
£25,000 was absolutely
staggering and I would like to
pay a special thanks to
friends, business partners and
suppliers who helped make
this year’s event the most
successful to date.”
Staff from Prudential at
Craigforth have also voted to
support MND Scotland; and
their Distribution North Charity
Challenge involves a huge
variety of fundraising activities
which they hope will help
reach a £10,000 target. One
member of staff even bravely
completed a bungee jump!
Many thanks to all of the
companies and
organisations who have
supported us in 2009. For
more information about
how your company or
organisation can get
involved, please contact our
Fundraising Manager, Iain
McWhirter on 0141 945 1077
or by email at
iain.mcwhirter@mndscotland.
org.uk
People with bulbar symptoms often have
difficulty in swallowing food and drinks without
some of it going down the wrong way and
causing coughing fits. If this happens it is
essential to ensure that you can still eat and
drink safely. Look out for the early onset of
problems; if these occur contact your MND Care
Team Specialist. Referral to a speech and
language therapist will ensure the best advice
can be offered on modifying swallowing
strategies, diet and possible changes to eating
and drinking methods.
Some people thicken runny liquids with food
thickeners available from your chemist, while
solid foods can be blended to a puree and
re-thickened if necessary. There will be a
demonstration of techniques, recipes and a
chance to swap your favourite recipes at MND
Scotland’s Offices in Glasgow on Thursday
January 28th at 7:30 pm. To reserve a place
call Bob on 0141 945 1077.
Do you, or
someone
you care
for, have
swallowing
problems?
The next meeting of the Glasgow Support
Group will feature recipe ideas and
demonstrations to help make eating easier
for those with swallowing difficulties.
Thursday 28th January 2010
7:30pm
MND Scotland, Unit 7, 76 Firhill Road,
Glasgow, G20 7BA
To reserve a place
call 0141 945 1077
MND and safe eating • volunteering
MND and
Safe Eating
Volunteering
A Big Thank You to all
our Volunteers!
As 2009 comes to an end, the
staff at MND Scotland would
like to say a big thank you to
all our volunteers and
supporters, including our board
and branch members;
fundraisers; counsellors; office
assistants; events assistants;
drivers; publicity distributers;
cheque collectors;
photographers and the
complementary therapists.
This year saw an increase in
raising awareness through the
team of publicity distributers
displaying materials in the
various GP surgeries; this is the
first time we have actively tried
to get materials in waiting
rooms.
The on-the-day organisation of
the fun run was made much
smoother due to the increased
numbers of stewards and the
runners / walkers enjoyed the
post-event massage provided
by our volunteer therapists. We
also organised a hospitality tent
at the end of the Edinburgh
Marathon for refreshments and
massage which were well
received.
During September 2009 we
introduced a new
complementary therapy pilot
and so far the feedback from
the clients has been very
positive. Overall the volunteers
have done a superb job this
year and without this support
we couldn’t offer as many
services to people affected by
MND as we currently do. We
hope you will continue to offer
your time to the charity as you
so graciously have done so far.
We wish all our volunteers and
supporters a Merry Christmas
and look forward to working
with you all again next year.
Glasgow Branch
MND Scotland is in the process
of trying to get a Glasgow
branch established. Early next
year we intend to hold a branch
formation meeting within MND
Scotland HQ and we are on the
lookout for potential volunteers
who would be willing to muck
in and make a difference locally
for people affected by MND.
No experience or specialised
skills necessary. If you would
like further details, please
contact Dawn Hamilton on
0141 945 1077.
13
staff news
Staff News
New Faces at Firhill Road
Lynn Black,
Information Officer
I am the new Information
Officer. I joined the
organisation in August 2009
but I’m no stranger to the
MND Scotland information
service as I’ve been working
as a volunteer in this
department since 2004.
Before then, I spent many
years working in the
pharmaceutical industry as a
biomedical / scientific
information officer.
My main volunteering
contribution to MND Scotland
was electronically cataloguing
the charity’s 1200 resources
which were subsequently
added to the Shelcat (Scottish
Health Libraries Catalogue)
catalogue. This means that
even if you can’t visit our
library in person, you can do
an online search of our
specialist MND collection of
books, journals, and DVDs,
along with items from around
50 other Scottish NHS health
libraries. Visit the information
page on our website to access
the Shelcat Catalogue.
14
Another major aim of the
service is to make as much
information available in a
downloadable electronic
format as possible. I’ll help
create new factsheets on
information relevant to MND,
and keep the existing ones up
to date. I will also be involved
in the development of the
‘MND Community Space’ on
the NHS Scotland e-library,
another valuable electronic
resource for health & social
care professionals to share
information.
If you wish more
information contact Lynn
Black on 0141 945 1077.
My responsibilities at MND
Scotland include accounts
preparation, cash flow,
company secretarial, financial
strategy and business
planning, maintenance of
financial systems and controls,
treasury, audit, salary
processing, pensions and
insurance. Keeping MND
Scotland’s financial records in
order is not as boring as it
sounds. Making sure that
limited resources are
efficiently and effectively
utilised helps to ensure that
services provided by MND
Scotland are maintained and,
where possible, enhanced.
With the ‘credit crunch’ still
ongoing, it becomes even
more important that the
charity achieves best value for
the money it spends. I’m
looking forward to making
sure that is the case.
Award for Dedicated
Service
Iain Smith,
Financial Controller
I am the new Financial
Controller and I qualified as a
Chartered Accountant more
years ago than I’d like to
remember. After leaving
public practice, I worked in a
number of positions, most
recently for a housing
association in Ayrshire.
At this year’s Conference in
Stirling, Judy Newton, MND
Scotland Care Team Specialist,
based at Edinburgh Western
General, was delighted to be
officially awarded thanks for
her 10 year service to people
affected by MND. Judy has
since been in touch to offer
her heartfelt thanks and says
her award has been taking
pride of place at home.
Over 4,000 copies of this edition will be sent to supporters in Scotland and around the world. MND
Scotland now offers readers the opportunity to receive each edition of Aware via email as a
downloadable document. If you wish to take advantage of this and help reduce MND Scotland’s costs
per issue then contact [email protected].
Free Tickets at Firhill Stadium
Partick Thistle Football Club,
known as the Jags amongst
football fans, has become a
reliable supporter of MND
Scotland in recent years. We are
delighted to announce that
they now offer free home
match tickets for individuals
and families affected by motor
neurone disease. Kieron
Dempsey, Community Director
at Partick Thistle said, “The club
believe that community support
is important. Following stories
in the press relating to the
effects of MND upon members
of the Scottish football
fraternity, we became aware of
the effects of the illness upon
them and their families. We
have offered our support in
fundraising ways and the MND
community are now welcome
to attend league and cup
games for free at Firhill
Stadium.”
MND Scotland would like to
thank Partick Thistle Football
Club for their generosity and
wish them the best of luck for
the rest of the season. For more
information about obtaining
tickets call 0141 945 1077.
A gift in your Will can
make a real difference
Photo courtesy of Partick Thistle Football Club
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.
aware via email • free tickets at firhill stadium
Aware via Email
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
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 Community and Emotional Support
• 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 28 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.
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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 working name of the Scottish Motor Neurone Disease Association, the only charity
funding research and providing care and information for those affected by Motor Neurone Disease in Scotland.
Post To:
MND Scotland
76 Firhill Road
Glasgow
G20 7BA