MND Race Day raises £80,000
professional polo player David
Heaton-Ellis, who lost his fight with
the disease, aged 39, and who set
up the Heaton-Ellis Trust.
The day featured seven sponsored Inside...
races and a gourmet Champagne
Brenda Rayner on 2
lunch for guests in the Pavilion making a difference
before the main auction which
Story and pictures 3
raised £43,000. behind Race Day
Berkshire County 4
A charity race day at Newbury Lunch guests also bid at a Show Spotlight
racecourse, inspired by a man successful silent auction which ran
Barging about on 5
who lost his battle with MND last
throughout the day and netted the canal
year, raised £80,000 for world- £14,500. It was run by Jan
leading research work. Gryglaszewska and Joanna Knott, Drop-in, don’t drop- 6
from the MND Association’s
TV racing presenters Clare Reading and West Berkshire
Balding and Willie Carson branch. Kings of the Road host 7
a right royal Quiz
persuaded punters to part with
their money to help find a cure A team of branch volunteers also Old Banger is just 8
the Italian Job!
for the devastating disease. sold raffle tickets around the race
course and collected at the gates A stairlifting
Experience with 9
Clare Balding, whose family live in as the punters left for home.
Kingsclere, near Newbury, hosted
an auction with prizes including a Delighted event organiser, Clair
Netta and David 10
holiday to the Seychelles and a Southwell, of the Heaton-Ellis Trust,
work experience package with declared afterwards: “It all went
Line up to dance 11
with Carol and Reg
the Daily Mail. really well.”
On their bike to 11
Jane Gilbert raise cash
The charity race day on More information and pictures
September 28th was inspired by on page 3... Diary Dates 12
Registered Charity No 294354
Reading and Nov
Together we can make a Difference 2
extremely interested and received both sound practical
shared in our tales of DIY acci- and emotional help. We have
dents, frustrations, numerous shared tears and laughter –
hospital visits for both minor the latter now being the
and major injuries and of ‘norm’!
course the humour that just
had to prevail throughout Over the years Jan and
Brenda and Brian Rayner these trying times. husband Ed, along with Val
wi th Asso ci ati on Vi si tor, (Pearson) have become firm
Jan Gryglaszewska, who, with Brian and I both felt that it was friends and we now often
the local branch, has made
so important for fellow visitors meet up to share meals as well
such a difference to them.
to understand just how men- as advice!
On Saturday October 16th, tally, emotionally and physi-
Brian and I were asked if we cally drained we both were Brian and I both feel that we
would be available to take until Jan came into our lives. have also benefited from
part in the 2010 Inaugural Having coped for some 10 attending drop in meetings
National Association Visitor years on our own we were and fundraising events etc.
Forum as the Keynote definitely sent our very own Everyone who works for the
Speakers. angel! Association, especially in our
local branch has been
To explain the huge differ- We were able to explain the instrumental in helping us to
ence in our lives that our complete transformation to enjoy and live our lives to the
Association Visitor, Jan our lives that followed Jan full!
Gryglaszewska, had made Gryglaszewska’s first visit and
was not difficult, but we felt how we were soon able to I just wish we could give every-
that in order to fully under- acquire, from Social services, one a snapshot of our before
stand the incredible benefits Occupational Therapists and and after life then we could
we have enjoyed, it was im- the branch itself, several definitely say...Together we
perative to highlight our pieces of equipment, that not CAN make a difference.
journey leading up to that all only made daily living easier, Brenda Rayner
important time. but also helped Brian retain
his dignity – especially in the Get your flu
We both then realised that bathroom.
recalling a lot of those
memories was a painful and Jan was available every In the next few weeks, the
infirm, elderly and those with
emotional business, minute of the day whether by
illnesses such as Motor
especially as Brian was telephone, email or mobile.
Neurone Disease should be
diagnosed with Kennedy’s Her visits were looked forward advised by their doctor/
disease – a rare form of to with anticipation. Jan gave district nurse to get the
Motor Neurone – some 15 us hope, encouragement and latest influenza vaccination.
years ago. re – established the will to live.
G e t th is N e ws l e tter b y em ail .
C o n t a c t V a l P e a r s o n
However, the audience was From day one we have email@example.com
Reading and Nov
David Heaton-Ellis-the story behind Race Day
The MND Race Day on three-year-old son Geordie
September 28th was inspired had a 50 per cent chance of
by professional polo player inheriting the familial type of
David Heaton-Ellis, who lost his MND.
fight with the disease, aged 39,
and who set up the Heaton-Ellis He and a group of friends set
Trust, after becoming the third out to raise £1.4m to fund
person in his family to be struck research – an MND gene
down by MND. hunting project- led by Profes-
sor Chris Shaw at King’s
Despite his battle with rapidly
College Hospital in London.
deteriorating health he was The late David Heaton-Ellis
determined to help fund with his wife Sophie and son
For every £1 raised by the
genetic research work into the Geordie at their Headley
Heaton-Ellis Trust, a further £3 is
causes of MND which also home in December 2008
awarded by t he MND
killed his racehorse trainer
Association, together with its For more information
brother Mikie Heaton-Ellis, aged on the appeal, visit
American counterpart ALSA
41, and their late aunt Cairnie. www.heatonellistrust.com
and the Medical Research
David was also aware that his
Jane Gilbert Our pictures from the Newbury
Race Day show Clare Balding
and Willie Carson doing their bit
to get punters to part with
Trevor Sprules (below)
and team MND (above)
What do you fancy??
Sophie Heaton-Ellis and
Professor Chris Shaw from
Kings College Hospital
Reading and Nov
MND in the County Show Spotlight 4
agricultural show and Truffle, All was not lost and instead
the show’s pig inspired a porker the team sat outside the
of a theme for the stand. marquee with collecting
buckets and handed out
Visitors were able to guess the balloons and sweets to
number of pennies in our piggy children. Donations quickly
bank, guess its name and even f o l l o w e d and the
race a pair of “oinking” piglets. Association’s profile was
MND was in the spotlight at There were raffle tickets and again given a boost.
this year’s Royal County of Christmas cards for sale and our
Berkshire Show thanks to our Association Visitors were on Branch chair Margaret Moss
dynamic team of hard- hand to give advice and an- paid tribute to all the helpers
working volunteers. swer questions about MND. saying it was great to see
how the stand developed,
The stand at the two-day show evolved and adapted over
near Newbury was a new the two days.
venture for the Association’s
Reading and West Berkshire She said: “We have all had
branch and proved to be a time now to assess the
steep learning curve. success of our venture into
the show. We have learned
Pinky and Perky showing
Our team of show novices a great deal from our initial
their sporting colours
arrived to set-up on Plot 290 visit – the first is always the
and quickly transformed a The racing pigs proved an hardest!
patch of grass into an impres- instant hit with the younger
sive showpiece displaying our visitors but when volunteers “Overall we believe that we
vision of a World Free of MND. turned up for duty on the had a good result; useful vis-
second day to find Perky had a its to the stand, many ques-
broken leg some quick-thinking tions asked and answered,
was required to save our with orange, blue and white
bacon! balloons all over the show-
ground, followed up by vol-
unteers in their blue t-shirts
raising awareness as they
went around and about.”
Ann Minks with son Rob,
secretary Val Pearson and
AV, Wendy Gouldthorpe Our patron,
Orange, blue and white MND Richard Benyon,
Association balloons soon was among the
spread among the 70,000- Above and right: A visit from our many visitors to
strong crowds at the 101st patron, Newbury MP Richard the stand and
Benyon, with chair Margaret Moss said he was very impressed
Reading and Nov
with all the work done by
Barging about on the Canal
throughout the year.
enjoy the smells, sights and
Now the branch manage- sun. The team from the Rotary
ment committee is already Club navigated the canal
thinking of having a stand at locks with skill but did suggest
next year’s show – we take to our seats and hold
September 17 th and 18th – to
on at this point which turned
build on this success. out to be good advice as it
did become rather bumpy on
In August this year, the Branch an otherwise peaceful trip !
*The cost of raising the MND accepted the Newbury Ro-
Association’s profile meant tary Club’s offer of the use of A few heavy showers didn’t
a small financial loss to the their barge to travel from dampen the atmosphere and
branch but this could be Woolhampton to Sulhamp- I think we all agreed that it
avoided with sponsorship in stead and back along the was a very pleasant day with
2011. Kennet and Avon canal. plenty of good humoured
Please consider how your It was a bright summer’s Ann Minks
personal or business con- morning and the boat was
tacts may help us to work to moored at the lock gate near
secure a World Free of MND. the Row Barge pub. Several
PlwMND and their partners
Jane Gilbert arrived and were carefully
lowered onto the lower deck
and along with some helpers
and plenty of sustenance,
(non-al of course!) we set off
on our “adventure”. Our pictures show The Rotary and
MND barges at the lock gates
One of our party decided to (above), and Anne Smith (front
left), with Shirley and Mike Dann
enter into the spirit and had (foreground) and Bernie Baker
her wheelchair put at the and Joyce (back left).
pointed end of the boat to Ann Minks is at the sink!
Enjoying the racing are Maisie,
aged 8, and six-year-old Tilly Pink
Costello from Maidenhead, and
Brian Rayner with wife Brenda
Waitrose collects for MND
and Jan Gryglaszewski. Grateful thanks to all the staff This money will be wisely spent on
and customers at Waitrose in helping people in West Berkshire
Newbury who supported us living with MND. Waitrose has also
during the store's charity token helped us to raise vital awareness
collection during August. of this devastating disease.
We received £465 from the
Please continue to help us do
monthly £1,000 share-out
something optimistic to help.
under the successful
Community Matters scheme. Ann Minks
Reading and Nov
The Branch goes Wild (West) to volunteer 6
We’ll hitch up our wagon and to join us.
mosey down to the Corn
Exchange, Newbury, on 15 Come to the hoe down and
January. Dressed in our best see us in Newbury, tell your
western garb, we’ll do our friends and neighbours we’ll be
pesky best to be part of the there!
fun volunteering day.
Any of you (especially those SAT 15 JANUARY 2011
with costumes) are welcome 10 am to 3pm
Drop-in , don’t Drop-out!
You know how the our two Association Visitors,
unexpected always escorted the party to the
happens when you are nearest pub, and everyone
totally unprepared? w a s p l i e d w i t h
alcohol and sandwiches, so
Sam Brown, a Drop-in
This happened at the last they were more than satisfied. regular, who, after a visit
drop-in in when I arrived see a from a paramedic, a
small group of drop-inners E l i z a b e t h Bowran and doctor and, of course,
standing outside the church Gwenda Charman, two of our Jane Gilbert, rallied round!
hall looking f o r l o r n . stalwarts, drew the short straw
and stayed by the church thought it wasn’t serious, just a
The church hall was quiet – door to redirect those strag- reaction to the flu injection
doors locked, no warm glers who had turned up, all Sam had been given that
welcome and no sign of life. expecting support and morning.
Appeals by mobile phone sandwiches.
were left unanswered and I Sam was already beginning to
was aware that I needed to As for Sam. fortunately, we perk up, helped by the arrival
rise to the occasion and find were literally around the cor- of Jane Gilbert (He has a
a solution. ner from the nearest doctor’s weakness for blondes, does
surgery and the staff there Sam!)
A further concern was Sam were warm, friendly and abso-
Brown, one of our Drop-in lutely wonderful. A paramedic Thanks to everyone for rallying
regulars, who was beginning arrived within minutes, al- round and particular thanks to
to look very unwell, not at all though Sam was adamant he the doctors and staff of
his usual cheerful, cheeky self. did not want to go to hospital, Burdwood Surgery, who were
so the paramedic stayed with professional, understanding
But the MND team pulled itself him until Dr. Bahia of Burd- and kindness itself.
together and re-organised. wood Surgery could give a
Joanna Knott and Ann Minks, second opinion. Luckily, he Val Pearson
Reading and Nov
Kings of the Road host a right royal Quiz
‘A good time was had by all’!!
Certainly true of the recent
Quiz Night at the Wagon and his father
Horses Pub in Pinkneys Green, and their
Maidenhead, on Thursday 9th attendants
September to raise funds for helped make
the Quiz Night
MND. a right royal
The night was arranged and
hosted by Alex MacColl
(pictured, right, with car) – stages of fancy dress were wishing to take part and there
great nephew of our friend also avidly selling was even a team sitting at a
and colleague Cath Hazel tombola tickets – and some of table outside braving the
who sadly lost her battle with us were lucky to win chilly evening weather.
MND last year. several prizes on an extremely
fun evening. Alex and his father were
Alex and his father took part in dressed as kings and were
a trip by car starting at Staples helped by a team of willing
corner and finishing in Naples – helpers who all worked really
hence the name ‘Staples to hard to make the evening a
Naples’ in order to raise funds success.
for the association.
In all a total of £788 was
We arrived to find the very car The MND local branch team raised on the night – a
that was to be used for the trip with Brenda 3rd from left. fantastic result to a fantastic
taking pride of place on the evening!
forecourt of the venue – In all, approximately 20 teams Brenda Rayner
sporting fantastic red sparkly took part and entered into the
paintwork – they obviously spirit of things with gusto. As
mean to be noticed!! There is still time to support Alex
the evening got going, both
and Calum’s fundraising - see our
bars were filled with those story also on page 8...
Local students in various
Raffle raises £770 The new National Office
scheme has meant that the
To know that you have
personally helped towards
for local funds proceeds of the tickets sold the cost of a stair-lift or a
within a certain series of wet-room for someone living
numbers from this year’s raffle with MND is the best
have gone directly to our Christmas present you could
local branch. give, both to the family
concerned and yourself!
Many thanks to those of you
who took part and raised Many thanks to you all.
Reading and Nov
Old Banger is just the Italian Job 8
Maidenhead’s Alex MacColl has driven 5,000 in foreign places never visited, experiencing
miles to Naples and back in a rusty old cultures, meeting new people, and then the
banger to raise thousands of trip back with my best mates.
pounds for the MND I wouldn't change a thing.
“Above all, using this opportunity to
He and his dad Calum not raise over £5,000 (including prize
only made it to the finishing money) for the MND Association.
line but they won the four-day What an experience!”
rally’s first prize of £1,000.
The Lancia Beta HPE before The enterprising pair who run on-line
(above) and during the
The dynamic duo has so far race (below). See Alex and computer sales firm Macking UK far
collected £5,000 from their the car also on page 7and exceeded their fundraising target
epic adventure in a 1981 Alex and Calum, below to help fight MND – a cause close
Lancia Beta HPE which to Alex’s heart as he lost his great
cost . . . just £125. aunt Catherine Hazell to the
Twenty-year-old Alex said
after their incredible trip: They put in a lot of work getting
“It's been expensive. I know I the old banger ready for the big
spent about £800 on the trip run to Naples and made sure it
(not including the car!), but looked the part by decorating it
every penny was worth it. in sparkly glitter.
“It's been one of those ex- There is still time to sponsor
periences that I'll never Calum and Alex - http://
forget, and one of the www.justgiving.com/MacKing-
best times of my life. It was UK-Does-Italy-In-A-Lancia - as
great to spend the rally the fund is being kept open un-
with my dad, chatting til they have received their
about things past and pre- prize-money from the rally
sent, (the odd argument organizers.
too), drinking and eating Jane Gilbert
branch. Go on, do it now, you
Christmas Shopping? have nothing to lose!
Buy your Christmas Cards, If you don’t have a catalogue
wrapping paper and so much you can view the available merchandise
more to raise valuable funds by visiting www.mndassociation.org/shop
for the MND Association. Buy but don’t forget to order through the local
through our local branch and branch by contacting Mary Davidson
save postage as well as on 0118 983 2605 or by
earning money for the email firstname.lastname@example.org
Reading and Nov
A Stair lifting Experience by Colin Moss
make any seating transfers. This two years seemed the best
is often a better long term option for me.
solution but only providing the
bathroom and bedroom is also I applied for a Disabled
wheelchair accessible. Facilities Grant but didn’t
meet the (lack of) income
In our case this was not so and, criteria. Thankfully the MND
more crucially, there simply Association stepped-in and
wasn’t space to locate a sent me a cheque for more
through-floor lift, which was than half the total purchase
also expensive (at almost price, which enabled me to
£10,000) and would be a very order it immediately and
prominent feature in two rooms Bespoke delivered it within a
of the house, upstairs and week.
There were many challenges
So we opted for a stairlift, but during installation, including
the ‘million dollar’ question the two 90 degree bends in
Shan and I moved home was, could a stairlift be made my staircase, and I wish I
recently after r e a l i s i n g to fit a difficult staircase? had considered an
we needed something automatic swivel seat, as my
more disabled f r i e n d l y I surfed the internet for push-down handle is easy
in the longer t e r m . potential suppliers and read enough when sat in the
reviews. Despite finding many chair, but tricky to operate
After casually looking for a suppliers, there are very few at the top of the stairs if you
bungalow or more suitable actual manufacturers in the UK need to send the lift back
house, a discussion with my OT and my first choice manufac- down so others can use the
prompted us to step-up our turer (purely from an aesthetic stairs.
search and, although the viewpoint) was Freelift (made
house we decided on is not in Holland) for the simple rea- Three weeks after installa-
entirely wheelchair friendly at son that their curved stairlifts tion, the lift is working
present, it is ideal for us in many run on a single tubular rail and perfectly and I am pleased
other respects. look neater than the two-rail with it. It has a 12 month
stairlifts. guarantee and , being a
Our first priority was to ensure Stannah lift, which has been
we could find a way for me to Finally, from four companies in production for several
safely negotiate the steep, selected, Bespoke Stairlifts years, spare parts are readily
curved staircase. Fortunately, (who specialise in recondi- available, as is a
my physical decline has been tioned Stannah lifts for difficult comprehensive lifetime
quite slow and we have plenty curved staircases) gave me warranty/ service cover
of space to build a downstairs t h e most competitive option.
bedroom plus wet room in the price and I was impressed by
medium term. the rep who carried out
the initial survey. Colin Moss shares
We considered two solutions to his experience of
the staircase problem. The first I had considered rental, but, at ordering and installing
was a through-floor lift, which £950 for six months rental, the a stairlift for his
can accommodate a wheel- break even period for buying a
chair and avoids the need to reconditioned lift of less than
Reading and Nov
Our Levelling Out Experience by Netta Thorne 10
and you will not be surprised to amenity, which many will
learn that it took over 2 hours know can be a big hurdle
before I could get through. I when trying to find holiday
left our details without much accommodation.
hope of being lucky. Imagine
our delight when 2 days later There were about 5 acres of
we were rung and told we grounds for us to roam and
had been allocated a week in a large decking area
August! surrounding the house,
which provided a great
We were accompanied by our space for Dave and our
Netta, David and family at the two sons, their partners and 2½ grand daughter to play
adapted farmhouse in Somerset- year-old grand daughter and ' c h a s e ' - wheelchair
the Levelling Out Project offers free 1 year-old grandson. a g a i n s t scooter.
short breaks to PlwMND and their
families and carers
The spacious detached 4-
My husband David was bedroom house stands in an
diagnosed with MND in e l ev at e d p o s it io n w it h
November 2007. For one stunning panoramic views of
reason and another we had not the Somerset Levels which can There was even a hot tub
had a holiday since February be seen from e v e r y outside, from which could
2008. So when we heard about window of the house. be seen the stars at night
the Levelling Out Project and the views during the
we were very keen to The owner and her project day.
b e c o n s i d e r e d . co-ordinator, who lived
nearby (who was very warm The fridge and freezer were
The project was created by a and welcoming and on hand fully stocked with fresh
wonderfully generous lady, who throughout the week) had locally sourced foods and
having cared for her late thought of a b s o l u t e l y the pantry was also full of
husband, wanted to give everything to make our stay fresh vegetables and staple
families the opportunity to enjoyable and s t r e s s food stuffs. Again all free.
spend time together and free. The master bedroom
experience the 'magic' of her with large en-suite bathroom It truly was an amazing week
beautiful family home - and it was on the ground floor and and we will be forever
was free! It was to be run in was accessed t hrou gh grateful to the gener-
conjunction with MND double doors f r o m ous owner who has given
Connect - she had made the decking. D a v e us the opportunity to spend
13 weeks available could even rest in bed precious time together, in
throughout the summer. and see the views from there. such beautiful surroundings,
especially for Dave with the
We had to phone on a certain From a 'disabled' point of view grandchildren.
date and register our interest, the house offered every
Reading and Nov
Line up to dance with Carol and Reg 11
bring and buy sale. And the
bottom line was that we made
a profit of just under £500 – a
very encouraging result!
Many thanks to Steph and Julie
of Steps and Stetsons,
Carol Bishop and I are keen have done this every summer their support, and especially
line-dancers, and attend les- since. Proceeds have gone to for the loan of music CDs
sons every Wednesday at the MND Association in mem- as this was vital to the
the Crescent Resource ory of my wife, Susan Watson, success of the evenings.
Centre in Lower Earley. who was a keen line dancer,
and who died of MND in 2006. Also, thanks to Ellie and Mary for
assisting, to the staff at the Cres-
In August our instructors The dances are now official
cent Centre for their co-
Steph and Julie of Steps and MNDA sponsored charity
operation, and of course to all
Stetsons take a well-earned events, so we can hire the hall
the line dancers who came to
break, but this leaves us with at the charity rate. It was only
a gap in our lives. Four years available for three of the Au-
ago Carol had the idea that gust Wednesdays, but atten- Reg Watson
we could run Charity Socials dance was good, and we
Ever wondered what is
to take up the slack and we also organised a raffle and a discussed and decided by our
B o a r d o f T r u s t e e s ?
On their bike to raise cash about_us/board_of_trustees_reports
Grandmother, Catherine George Pearce, Matthew's
Smith, from the Newbury area, grandfather, who lived in the
has every reason to be proud Newbury area and died from
of grandson, Matthew, who MND five years ago. Elisa’s
recently completed a grandfather has also had MND
sponsored bike ride from for nearly 15 years.
Ludgershall, near Andover, to
Newbury, a distance of about The trio raised £256 from family
40 miles. and friends, which is being
forwarded to the Lancashire
Matthew and friends, Elisa branch of MND Association, as
Morris and Alex Topham, who that is where Elisa's grandfather Matthew Smith (centre)
are still at school, set out to lives. Many congratulations to with friends Elisa Morris (left)
raise money for the MND all three of them for showing and Alex Topham, prepare
Association in memory of such spirit and determination. for their 40 mile ride.
Reading and Nov Thank you Holiday Inn Reading West, Bath Road, Padworth
2010 and Kall Kwik Printers, Reading for your ongoing support.
Picture Perfect 12
THE Disabled Photogra- They host an online forum
Drop - ins Tues
phers’ Society wants to where you can ask St Luke’s Hall, Theale 9 Nov
enable photographers in questions and share
the UK who may need information with Cornerstone, Norreys Tues
Avenue, Wokingham 11 Jan
advice on how to over- other photographers. RG40 1UE (next to All 2011
come difficulties and Saints Church) 12.30 -
take great pictures. The website also provides 3pm
details of events, gallery
If photography is your displays and how to enter 28 Nov
passion, or you would like to competitions, with a selec-
Wokingham Town Centre
explore this medium, tion of inspiring images from 5.30pm
please visit their site. previous award winners. In aid of MND Association
and McMillan Cancer
40 bucket collectors needed
Need Help getting to Hospital? between 3pm-5pm. Please
contact Val Pearson if you are
willing to help.
THE MNDConnect team is available towards the cost
aware that increasingly of taxis for these kinds of Christmas Tea Wed
more people with MND are appointments, and we can Party
having problems using hos- group together 4.30pm
pital transport to attend requests from a number St. Luke’s Hall, Englefield
Rd, Theale, Reading
c l i n i c o r o u t of people requesting RG7 5AS
patients appointments. help in this way.
O pen t o al l but pl ease
contact Val Pearson on
They are often expected to We would urge anyone in 0118 9789063 if you would like
be ready for collection very this situation to contact to come, need a lift or have
any special needs.
early in the morning and your local branch or
may experience a lengthy contact us direct.
Wild West 15 Jan
travel time as other people 2011
are collected across the
area. They may also have a
long wait for transport to
Corn Exchange, Newbury
take them home. - don’t forget your stetson
However, financial support is and spurs!
Branch Branch Contact Secretary Events Newsletter
Beth Drury Val Pearson Coordinator Mary Watson
Contacts 0118 9421600 0118 9789063 TBA 0118 9722506
Chair RCDA Treasurer Publicity Website
Margaret Moss Fiona Turner Ed Gryglaszewski Jane Gilbert Mary Davidson
0118 9470871 08453 751854 0118 9789069 0118 9714172 email@example.com
Registered Charity No 294354