MATTERS Hike for Health Great Wall of China Advisor Corner: Grief & Loss Drew's Story - " Will you share a Cuppa with me?" - MNDAWA | Motor ...
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Volume 8 Issue 2 • APRIL – JUNE 2019
MATTERS
Hike for Health
Great Wall of China
Advisor Corner:
Grief & Loss
Drew’s Story
“Will you share a
Cuppa with me?”
www.mndawa.asn.au
INSIDE THIS ISSUE
Volume 8 Issue 2
April – June 2019
Note from the Executive Officer....................................................................................................................................1
MND New Staff & Notices.............................................................................................................................................2
July Pamper Day...........................................................................................................................................................2
Change 4 Change.........................................................................................................................................................3
Advisor Corner: ‘Grief & Loss’ ......................................................................................................................................4
Drew’s Story...................................................................................................................................................................6
Sarah’s Fundraising Files..............................................................................................................................................8
Cuppa Tea for MND......................................................................................................................................................9
Hike for Health Great Wall of China 2019...................................................................................................................10
MND News...................................................................................................................................................................12
MND on the move, taking MND services to the regions...........................................................................................16
MND Condolences & Loving Memory........................................................................................................................18
Order your new 2019/2020 Entertainment membership now ..................................................................................20
MND Past Carers Group Program for 2019...............................................................................................................20
MNDAWA Events Calender........................................................................................................................................21
Support Us With Your Donation..................................................................................................................................22
MOTOR NEURONE DISEASE HONORARY POSITIONS
ASSOCIATION OF WESTERN AUSTRALIA Hon. Solicitor: Mr Peter Murray
Centre for Neurological Support Hon. Accountant: Mr Tony Silipo
The Niche, Suite B/11 Aberdare Rd
Nedlands WA 6009
PATRONS
Phone: (08) 6457 7355
Narelda Jacobs
Fax: (08) 6457 7332
Keith Potger, AO
Email: admin@mndawa.asn.au
Kim Hughes
Rob Edis
COMMITTEE OF MANAGEMENT
Chairperson: Samar Aoun
STAFF
Vice-Chairperson: Jan Stiberc
Treasurer: Helen Kraus Executive Officer: Andrew Hirst
Secretary: Jan Taylor Fundraising & Events Manager: Sarah Wiley
Member: Lay Kho Fundraising & Events: Anne Northall
Member: Scott Ellwood Education Coordinator: Chris Line
Member: Anthony Akkari MND Advisors: Joan Ellis, Leanne Bodley,
Bree Martin & Abi Crisp
Member: Sue Walter
Accounts Receivable &
Member: Amanda Meloni
Administration Officer: Wendy Wilmot
Accountant: Ling Lee
Equipment Coordinator: Ben Joseph
MND MATTERS Volume 8 Issue 2
Note from the
Executive Officer
Dear Members and Friends,
As we come to the end of the financial year I have taken
a moment to reflect on what has been a very challenging
but successful year in many ways.
Our client numbers have continued to rise and we sit
at around 185 at the moment. Only a few years ago
we had 120 clients. This is largely due to people being
aware of MNDAWA and wanting to engage with us. Our
advisors attending most of the MND clinics and working
closely with our Neurologists means very few people with
MND slip through the net. The increase to four full time Our events and fundraising team have continued to
advisors and the continuity of staff has helped to provide build our signature events and added new events.
the support that our clients and their families need and I would like to thank all those people who have
deserve. donated their time and or money to the association.
I know that time is precious and money is hard
We have increased our equipment inventory by around
earned. 60% of the funds required to run the
$300,000 over the last 12 months. $150,000 of this was
Association come from the generosity of the West
purchased by Care, Cure, Support from their 2018 Drive.
Australian public.
I would like to acknowledge their support and generosity.
We have lots of events coming up and I look forward
Our regional and metro education sessions for health
to hopefully seeing you.
professionals have been well attended and the feedback
has been very positive. I would like to thank all the guest Andrew Hirst
speakers for sharing their expertise and knowledge. Executive Officer
Until there is a Cure,
there is Care
MND MATTERS Volume 8 Issue 2 – 1
Welcome
Anne Northall
Fundraising & Events Coordinator
I am excited to join the team at MNDAWA. I am covering
Zoe’s maternity leave. I have not worked in this area
before, but I am enjoying the work I am doing. I will be
co-ordinating fundraising & events for MNDAWA with
Sarah, our Fundraising & Events Manager.
I have met a few of our clients and their carers at recent
events and I am looking forward to meeting more of you
at our future events.
Zoe on maternity leave
Zoe has taken maternity leave from MNDAWA and we
wish her all the best while she is on leave. The team at
MNDAWA would also like to congratulate Zoe & Dan
ABOVE: Anne & Zoe at Street Appeal on the arrival of their baby boy, Joshua.
Pamper Day
Pamper Day
20 July 2019
Pamper days are held to allow people living with MND,
10.00 am to 2.00 pm their family & friends to feel extremely special and
have some well earned relaxation and pampering. We
have an amazing group of volunteers to make you feel
like you are floating on cloud nine and you can catch
up with others from our MND family. Come along and
enjoy Reiki, Kinesiology, Head & neck massage, Foot
Spas, Foot massage, Manicures, Facials, Reflexology,
Makeup, Hair Braiding. We also have a kids play zone.
A maximum of 3 treatments per person can be pre-
The Esplanade Hotel,
booked. We will email you prior to the day with your
Corner Marine Terrace appointment times. On arrival you will be provided with
& Essex Street, an appointment card with your pre-booked treatments
Fremantle written on it for you.
Please email admin@mndawa.asn.au or phone Anne on
6457 7355 and advise which treatments you would like
so we can book your appointment.
2 – MND MATTERS Volume 8 Issue 2
Change 4 Change
We could not continue our specialised family Thank you to all our donors,
support services without your support. fundraisers and supporters.
If you would collect donations with our
Change 4 Change tins, display our
Together we can make a difference. Blue MND Cornflower Box or sell our
merchandise, please contact the office on
We would like to acknowledge our Change 6457 7355 or email admin@mndawa.asn.au
4 Change collectors and the individuals,
communities and companies that have our Change 4 Change Tins
Blue MND Cornflower boxes to raise David Wearne
awareness and funds for the Association.
Julie Gordon
Jeffrey Hall
Claire Drabble
Water Corporation
MND MATTERS Volume 8 Issue 2 – 3
Advisor Corner:
Grief and Loss
Our MND Advisory service provides care coordination might also seem so different from each other. It can
and emotional support, connecting those living with feel like the biggest challenge to make sense of it as
MND to the services and support they require. If you or an individual and collectively as a family. Other times,
someone in your family has been diagnosed with MND it might seem as if everyone is aligned emotionally.
it is likely that you are experiencing many confusing We cannot rush grief and we need to allow the space
and confronting emotions and feelings including and time for it. It is important that we recognise that
feelings of loss and grief. Early retirement can be just feelings such as disbelief, denial, anger, sadness and
one of the changes that affects people with MND and loneliness can be quite normal ways of experiencing
their family members. This article will focus on the topic and expressing the emotional experience of grief.
of grief associated with loss and the emotional support
People have found seeking emotional support from
provided by Advisors. Considering the intricacies and
their Advisor helpful during difficult times while riding
nuances of grief and loss we cannot do this broad and
the waves of grief. If there is something in your own or
sensitive topic justice within this one article.
another person’s grief responses that worries you and
Grief is a response to loss and a part of life which you think you are unable to safely speak about your
affects all parts of our lives from our emotions, worries, then accessing the support of an Advisor can
feelings, health, physicality, philosophy and spiritual be of support during this time. Emotional support is
beliefs. Even before diagnosis, people with MND and available from your Advisor as someone that you can
their family are experiencing a range of psychological speak with about your experience with MND where
and social factors to do with losses where increasing you can safely express these concerns.
emotional support is a critical component to their
Each Advisor engages in professional development
care. Emotional responses of shock, uncertainty, fear,
and supervision which is an important part of
denial, anger, depression and anxiety are only a few
maintaining and developing a high level of emotional
of the intensive experiences people with MND and
and compassionate support to people accessing
their family are facing each day.
services. As Advisors it is important for us to be
One major theme of these emotional grief responses able to reflect on our own philosophies, belief and
is that each person is unique in how they will react and meaning making to manage our own biases when
respond depending on their biology, personality, ways providing effective emotional support. If you think
of coping, relationships and environmental context. As you might require more intensive emotional support
a culture we are very different in the how of grieving – your Advisor is there to gently and sensitively
– whether we are private and do not wish to share explore options with you. It might be that more regular
with others, to selective sharing and actively seeking counselling support would be beneficial for you while
people to express all our thoughts and feelings with. you are engaged in Advisory services as part of your
Within families the emotions for each family member health care team.
4 – MND MATTERS Volume 8 Issue 2
Self-care is critical through difficult times when the grief
waves hit or in the throws of the storm. Ensuring we set
aside and engage in at least one self-care activity each
day can alleviate some of this strain.
Some suggestions for self-care
during these times might include:
• Seeking help and support if needed through family,
friends, groups, your Advisor and health care team to
connect about your experience.
• Massage therapy to help with soft tissue mobilisation.
• Engaging in the respite.
Our MND Advisors provide exceptional
• Taking time for calming the mind with suitable breathing guidance and emotional support to those
exercises each day. Engaging in some mindfulness diagnosed with MND and their families.
activity such as listening to your favourite music, If you would like further information please
listening to an audiobook and podcast and reading don’t hesitate to call the advisors on
your favourite book over again. 6457 7355 or email admin@mndawa.asn.au.
• Art Therapy – you might like to try colouring in the Our advisors are Joan Ellis, Leanne Bodley,
graphic below! Bree Martin & Abi Crisp.
MND MATTERS Volume 8 Issue 2 – 5
Drew’s Story
Drew was diagnosed with MND in 2013 and was opal mine, driven on Eighty Mile Beach at both high
told that his life expectancy was 3-5 years. It was and low tide, Pemberton tree top walk, attended
suggested he should go home and start to make football games as well as concerts and most recent,
plans to get his life in order. two runs in a dragster – 0 to 240 kms in under 8
seconds.”
Drew says “well we did go home and we made
plans, the other things seemed too boring. We did “Motor Neurone Disease WA have a motto of never
not have a bucket list but we did have retirement give up, to us, that was a given.”
plans that needed to be brought forward, so
MND is a progressive, neurological terminal disease
we organised ourselves and headed off around
that can affect anyone, at anytime and although we
Australia on the first of many adventures.”
cannot change a diagnosis, together we can help
“We had a gopher that went in the back of our people living with MND to live better for longer.
Pajero and off we went. We would give anything a
There is still no known cause or cure for this
go and since then we have been around Australia
devastating disease, but with your help, we will
twice, journeyed overseas, camped with friends
be able to improve the quality of life of those living
on the beach, visited Canberra with a tour of both
with Motor Neurone Disease in WA through support
Parliament House and the War Memorial (laid the
services, equipment, education and research.
first wreath by a gopher), been underground in an
6 – MND MATTERS Volume 8 Issue 2
“Motor Neurone Disease WA have
a motto of never give up, to us,
that was a given.”
MND MATTERS Volume 8 Issue 2 – 7
Sarah’s Fundraising Files
Fancy fundraising for Motor Neurone Disease WA but not sure what
you can do? The A-Z of Fundraising Ideas is sure to help you out!
•A
rts or crafts stall • Limbo competition – charge an entry fee and then
see how low everyone can go!
•B
and night – get a local band to play and charge
people an entry fee. •M
ovie night – ask for a donation and get friends
together to watch a classic.
•C
ar wash – get your friends together and have a
fun day washing cars. •N
ame the baby competition –get old baby photos
of your mates or much better, your bosses or
•D
inner party – ask your friends/family to come teachers. Stick them up around your school or
around for dinner and charge $20 p/head. office and get people to pay to guess who they are.
•E
xhibitions – display your art, crafts and interests •O
pen garden – green thumbs can invite people
and charge an admission fee. to visit their garden and charge an admission fee,
• Fancy dress – get everyone to dress up in fancy maybe sell some plants as well.
dress, award prizes and collect donations. •P
lant sale – requires forward planning—buy a
•G
ames afternoon – get your friends together for an packet of seeds, vegetables or pretty flowers and
afternoon of board games, egg and spoon races, plant them. When they’re looking impressive, set up
or wheelbarrow races... use your imagination. a stall and sell the plants.
•H
ire services – hire out what you do best; mow •Q
uiz Night
lawns, handy man, massage or even accounts. •R
etail therapy – ask people to sacrifice three
• In lieu – instead of a gift for any special occasion items from their weekly shop and donate the funds
ask friends and family to donate. instead.
• Juice stand – make some fresh, natural juices and •S
peed dating – play cupid while organising a
sell for a gold coin donation at work. matchmaking event.
• Karaoke night – hold a night where people can •T
ea party – email cuppatea@mndawa.asn.au to
sing along to all their favourite songs. host your own event.
8 – MND MATTERS Volume 8 Issue 2you are cordially invited to
Cuppa
• University Challenge – get together with your old uni
friends and have a challenge! Tea
For MND
•V
alentine’s Day Event – soft music, mirror balls, red
decor... you get the idea. Sell tickets to the love sick
and desperate.
•W
axing – get your sports team involved and get
sponsored to wax your legs or chest.
• Xmas party – get out the mistletoe for a big
Christmas party, or sell homemade gifts at a
Christmas fair. 30 August – 10am
•Y
oga marathon – get sponsored to do yoga for a Chapels on Whatley
day. You’ll be so bendy by the end of it that you can 196 Whatley Crescent, Maylands
charge people to watch you tie yourself in knots.
Bonus!
•Z
any dress day – charge a fee for friends or work
colleagues to wear crazy clothes or hats for the day. Bookings Essential
$50 a head
Remember I am here to help so www.trybooking.com/BDMRK
please call me on 6457 7355 if you
would like any help with your
fundraising!
MND MATTERS Volume 8 Issue 2 – 9Hike For Health
Great Wall of China 2019
10 – MND MATTERS Volume 8 Issue 2In June, 9 intrepid and dedicated MNDAWA supporters joined 15 others
on a trip of a lifetime to trek the Great Wall of China.
Friends were made for life whilst traversing the only local people living with Motor Neurone Disease!
man-made object visible from space.
The team had the most amazing trip and together
Amongst the shouts of “ohhh my knees”, which raised a whopping $60,000. So, our huge thanks go
admittedly came mostly from Fundraising and Events out to Kerrie, Vanda, Tony, Wendy, Amanda, Cee, Ash,
Manager, Sarah, we were treated to some of the most
Chelsea and Sarah.
spectacular views in the world.
We all had very different reasons for taking part but a Watch this space for our next
shared goal of raising much needed funds to support adventure in 2020!
MND MATTERS Volume 8 Issue 2 – 11MND NEWS
UNITE AGAINST MND UNDER THE BIG TOP
UNITE
Joi n us un der the big
The Motor Neurone Disease Association of WA is very top for Th e
proud to be the beneficiary of the John Curtin Leadership
Academy Charity Gala for MND. This amazing event takes
AGAINST
place on Saturday 14 September at the BelleVue Ballroom at
Perth Convention and Exhibition Centre.
The JCLA students have worked very hard putting this event
MND
together and we encourage our supporters to get behind
Charity Gala
this spectacular evening. Tickets are $180 each in a table of
100% of profits help suppor
10 and $200 a head individually. This includes a 3-course West Australians living with t
MND.
meal and 5 hour drinks package as well as a night of
entertainment “Under the Big Top”
Fundraising events, such as this, help us to continue our life
changing work but we need your support!
• Because of you we provide emotional support from
diagnosis to death, for the person with motor neurone
disease and their family and loved ones.
• Because of you we provide practical support to ensure
a person living with motor neurone disease has the best
quality of life they can.
• Because of you we run education sessions for healthcare
professionals and the general public, ensuring that Dress: Black Tie
awareness of this disease stays high.
For tick ets ple ase visi
t: http s:// ww w.tr ybo
oki ng.c om /bc edz
• Because of you we are able to make the motor neurone
disease journey a little easier.
Brooklands Big Freeze
AND The 2nd annual Brooklands Big Freeze was held
SH A R E A C U PPA from June 6 – 9 to help Team Stoodley raise funds
V IN G W IT H
H EL P PE O PL E LI for their entry into Drive for MND 2019.
E D IS EA SE
M O TO R N EU R O N This year it started off with karaoke on Thursday
night with a blue & white dress theme, Friday night
saw DJ Kev spinning the decks with the rest of
us rocking out in our best 70’s & 80’s gear! Great
prizes were on offer for the best dressed. On
Saturday we had the infamous dunk tank set up
again in the beer garden with a record number of
people taking the plunge this year. Sunday was a
little more relaxed with families enjoying the reptile
petting zoo, face painting and more people stepped
up and sat on the seat awaiting their fate with the
tank. Raffle tickets were on sale during the whole
event with a prize pool total exceeding $1000!
Thank you to all who helped over the weekend and
especially to those who braved the cold for a great
cause, the youngest was just 10 years old and the
oldest well I better not say...
TO RE GIS TE R
A huge thanks to Kerri and the team from
Ca ll 64 57 73 55 or Brooklands Tavern in Southern River, without their
dawa .as n.a u
Em ail cu pp ate a@ mn ongoing help and generosity this event wouldn’t be
possible.
12 – MND MATTERS Volume 8 Issue 2MND NEWS
Cuppa Tea For MND Local Matters
You can make a difference to the lives of people living with at Grill’d Subiaco
Motor Neurone Disease by sharing a cuppa with friends, family this July
or colleagues!
MNDAWA is asking you to “share a cuppa with me” and organise
a Cuppa Tea For MND in August. The official date is Friday
30 August but you can host your event anytime in that month! Local Matters is the Grill’d community
To register and receive your fundraising pack please email donation program that sees each Grill’d
cuppatea@mndawa.asn.au. restaurant donate $500 back into the
community every month. The donation is
split between 3 local community groups
$300/$100/$100.
We need volunteers for our quiz night!
We are holding a quiz night on Saturday 10 August 2019 at the How can you help?
South Perth Community Centre Corner Sandgate Street & South
Terrace, South Perth and we are looking for volunteers for the We’d love your support in receiving the
night. Below are times and jobs we need people to help with: highest $300 donation! Simply head to
Grill’d Subiaco during July for a burger
Set up – 2:30pm – 4pm and pop your Local Matters token in our
Bar staff – 5:30pm – 10:30pm jar. The group with the most tokens at
General volunteers – 5:30pm – 10pm the end of the month receives the largest
Quiz markers – 6:30pm – 10pm donation.
Pack down – 10pm – 11:30pm It’s a simple (and delicious) way to show
If you are able to help on the day/night or would like any your support! You’ll find us on a jar at
further information please do not hesitate to contact us on Grill’d Subiaco, Subiaco Square Cnr
6457 7355 or email admin@mndawa.asn.au Roberts & Rokeby Road, Subiaco
MND MATTERS Volume 8 Issue 2 – 13MND NEWS
Support Motor Neurone Disease
Association of Western Australia
Order your new 2019/2020
Entertainment membership now
Your purchase of an Entertainment Membership contributes to our
fundraising. Help us to achieve our goal by purchasing your book now.
Thanks for your support!
The Entertainment Book, and the Entertainment Digital • Member-only priced cinema tickets, theme park
Membership, are your guide to the most popular tickets, flights, gift cards and more
restaurants, attractions, shopping, travel and more. • Access to valuable rental car offers you can book
• Discover over $20,000 worth of valuable up to 50% online with ease
off and 2-for-1 offers • Easy online search, mapping and reviews of
• Exclusive Member rates at thousands of hotels and participating businesses
resorts around the world Books can be purchased through our website
https://www.mndawa.asn.au/shop
fundraising figures • Michelle Lorenzo organised Trevfest 4 and raised
$116
• Chris our Education Officer gave an information
session at Whitford Catholic Primary School. They • The Williams family had a Christmas lunch
donated a cheque for $800 fundraiser and raised $1100
• Green Head Men’s shed collection tins raised $441 • Jeff Hall organised a Live Music Evening at Byford
Country Club and raised $7484.80
• KPMG held an annual golf day and raised $1180
• Jan Owen organised the Harvest Festival Cake
• Busby Family Foundation donated $15000
Sale and raised $728.50
• Gooseberry Hill Primary school held a fundraiser
• The Jurien Bay MND Golf Day sold $392.80 of
and raised $345
merchandise
• Newton Moore Senior high school had a week of
• Our annual street appeal was held on Friday 10
collections from students and staff and raised $250
May 2019 and with your support we raised $7000.
• Mrs Viv Rowney raised $450 by requesting We would like to thank all the volunteers who
donations to MND rather than presents for her donated their time on the day.
80th birthday
• As part of the 2019 Blackwood Rhapsody Concert
•S
apphire Ladies golf club raised $450 by having organised by the Jubilee Singers of Bridgetown
a raffle of homemade cakes and produce the Bridgetown Cricket Club provided members to
act as marshals. In recognition of this the Jubilee
•S
antos Ltd held a Hope puppy sale in the office
Singers raised funds for MNDAWA in memory of
and raised $430
one of the Cricket Clubs members, Noele Glancy,
•R
otary club of Como held at sausage sizzle at our who had passed as a result of MND.
Walk 2 D’Feet MND in Perth and donated the profits
of $1500
• In the Wild holiday homes donate $2 from each
booking through their website and have raised Walk to D’Feet MND
$678 so far raised $75,000
•K
albarri Motor Hotel have raised another $635 Walk to D’Feet MND was held
from the sale of merchandise in the hotel over the in May and we raised $75000.
last few months We would like to thank all our
•M
oline Village residents held an Easter raffle and volunteers on the day.
raised $165
14 – MND MATTERS Volume 8 Issue 225 August 2019 Your Exclusive Discount! Get an exclusive 10% discount by joining Team Hope in this year’s Chevron City to Surf for Activ. Walk, run or roll with us this year and raise funds for MNDWA. Here’s how: • Simply head to chevroncitytosurf.com/register/ • Select “Registration Type; Individual” • Select “Team Options; I’m part of a Team” • Search “Team Hope” and join our team: “Motor Neurone Disease WA Team Hope” • Make sure to set up your fundraising page for MNDWA during registration. Create a fundraising page for MNDWA and let’s beat our 2018 result of $5k! Register now chevroncitytosurf.com
MND on the move, taking
MND services to the regions
ABOVE (L-R): Dr Rob Edis and Professor Samar Aoun, Perron institute;
Participants at the Perth Workshop May 2019; Leanne Bodley, Advisor
MNDAWA continues to take our services and Both these events continued the theme with practical
education to the regional areas of WA. During the sessions on communication devices with the CATS team
MND awareness week in May, the workshop for health and respiratory care devices with respiratory experts.
professionals was held in Perth at Floreat Forum.
A big thank you to the following people for presenting
The event was attended by 44 nursing and allied and assisting in practical demonstrations at this event.
health staff, including physios, speech therapists
• Manny Manolios, Senior Engineer, CATS
and residential carers. Dr Rob Edis and Professor
Samar Aoun, (Perron institute for neurological and • Marija Nibali, Respiratory Home link nurse SCGH
transitional science) continue to support this project • Clare Rea, Sleep Scientist
and provide exceptional presentations. • David Lynch, Philips
The Perth event was filmed for MNDAWA by Zac The feedback for these events remains positive and
Creative, a professional film company. Filming the attendees wanting to know where the workshops will
event will enable our education and support to go to be held in future. Our Next workshop is at the Dog
areas when there may not be a speaker available. Rock Convention Centre in Albany on Friday
The film project is not quite complete but will give 16 August 2019.
MNDAWA options to show these presentations
Dr Margaret Sealey, researcher in palliative care and
at future events for both health professionals
bereavement, presented on pshyco-social support
and carers. The film project also allows for other
and palliative care support to people with MND.
opportunities, such as online information and
learning. An exciting future ahead.
Presentations from our
MND Health Professional Care Advisors
Education on Global day at Leanne Bodley and Abi Crisp, care advisors,
The SEBEL Mandurah presented on their role as care advisors at both these
regional events. Both telling their individual story
From Perth the education workshop moved to
of how they work alongside our MND clients. The
Mandurah and was held on international global day.
room always goes quiet during these presentations.
Again, well attended by 35 nursing, allied health staff.
Everyone taking in the experiences of the advisors
Dr Peter Silbert, Neurologist, presented at this event
and how MND has touched the lives of those living
on MND diagnosis and symptom management.
with this disease. Not only the person with MND
16 – MND MATTERS Volume 8 Issue 2ABOVE (L-R): cupcakes from NomNom Cupcakes; Carers workshop, Meadow Springs Country Club June 2019; Abi Crisp, Advisor;
Participants at the Mandurah Carers Workshop June 2019; Dr Margaret Sealey and Chris Line Education Coordinator, SEBEL Mandurah
but also the impact MND has on the carers. These You me and MND Carers
presentations are always engaging and emotional, workshops – The Niche
leaving everyone with a better understanding of the
support that the MND advisors provide. The You Me and MND program started up again
in May. These workshops are held at The Niche
on Tuesday evenings between 5 & 7 pm. They are
Carers workshop Mandurah, suitable for anyone who is caring for someone who is
Meadow Springs Country Club diagnosed with MND
The first regional carers You Me and MND workshop To date workshops have covered topics involving;
was held in Mandurah on June 20 at Meadow
• What is MND and symptom management
Springs Country Club. Eight carers of people with
MND attended the five-hour day. The workshop is • Self-care for carers including a mindfulness
designed to empower carers with knowledge and meditation session with Michael Sanford
confidence to care for their loved one living with • CATS team communication aids for people with
MND. Carers were able to get to know each other in MND including a practical session.
a caring, safe and supportive way.
Still to come:
The morning session covered a few topics including:
• Tuesday 9 July – Swallowing, nutrition and
• Understanding MND?
breathing
• MND Symptom Management
• Tuesday 23 July – Moving and transferring
• Community support through NDIS – Ian Mumford, techniques
Manager Enable
The afternoon was a relaxed session that looked at
self-care for carers. Giving carers some information
and guidance on self-care. Dr Kathryn Choules PHD, Places are still available for these events.
an educator in mindfulness and compassion training,
If you are a carer and would like to attend either of
provided an insight into self-care and compassion,
the workshops above. Please contact Chris Line
including practical mindfulness meditation. The
Education coordinator on 6457 7355 or email Chris
workshop ended with a recognition for Global day
on education@mndawa.asn.au
on 21 June with delicious cupcakes from NomNom
Cupcakes and a cuppa.
MND MATTERS Volume 8 Issue 2 – 17MND condolences & loving memory
We send our
heartfelt condolences
to the families of:
Brenda Bailey Michael Bergin
John Thomson Maria Kallane
Kaye Smith Irvin Philips
Teddy Beske Leslie Cox
Brian Smith Jeanette Weeks
Meryl Butler Doreen Tester
Victor Drake Brockman Paul Anderson
Graeme Follett Nada Jeniric
Patrick MacDonald Angela Webb
Marilyn Trembath Jeanette Ashworth
Craig Parker
Allan Read
Keith Lambert
18MND condolences & loving memory
Donations made in
Loving Memory of
Desmond Thomas Stuart Pharoah
Joy Vause Tim O’Malley
Lorraine Aikins Trevor Gibbs
Maggie Milne Val Knott
Maria Kallane Wayne Foulds
Mary Hayward William Forward
Michael Toogood Agnes Wright
Darrin Romasz Ann Whiteman
Don Wright Brenda Bailey
Edward Lind Iris Short
George Cutts Janine Stoodley
Les O’Neil Sandra Cocks
Nic Candeloro Stella McMahon
Peter Godfrey Margaret Burr
Peter Wooldridge Marian Watson
Phillip Watts Winifred Leach
Ray Hutchinson Peter Dibble
Robert Hale Tony D’Souza
Robin Turvey Tony Johnson
Ron Cleasby Trevor Morris
Ron McNamara Vivienne Mickle
Stephen Bailey Michael Owen
The cornflower:
The Blue MND Cornflower is the national symbol of hope for Motor
Neurone Disease. It may have a fragile appearance but it is hardy
in nature which is representative of the remarkable strength people
living with MND have. We live in hope that we will find a cure for
Motor Neurone Disease.
19UNITE
Join us under the big top for The
AGAINST
MND
Charity Gala
100% of profits help support
West Australians living with MND.
Dress: Black Tie
For tickets please visit: https://www.trybooking.com/bcedzMNDAWA Events Calender
JULY – DECEMBER 2019
If you have any questions on our upcoming programs or events please contact the office
on 6457 7355 or email admin@mndawa.asn.au.
Date Event Venue & Details
JULY
The Wild Fig Café,
2nd Past Carers Morning Group
190 The Esplanade, Scarborough
20th Pamper Day Esplanade Hotel, Fremantle
Hazel Sturrock, 17 Spigl Way,
25th Past Carers Afternoon Group
Bateman – 2pm – 4pm
AUGUST
The Little Pantry,
6th Past Carers Morning Group
206 Nicholson Road, Shenton Pk
South Perth Community Centre,
10th Let’s Get Quizzical For MND
Cnr Sandgate St & South Tce, South Perth
Albany workshop for Dog Rock Convention Centre,
16th
health professionals 303 Middleton Road, Albany
Janne Parsell, 66/7 Clere Pass, Canning
22nd Past Carers Afternoon Group
Vale, 2pm – 4pm
Chapels on Whatley,
30th Cuppa Tea for MND
196 Whatley Crescent, Maylands
september
Secret Garden Café & Patisserie,
3rd Past Carers Morning Group
64 Angelo Street, South Perth
Kardinya Tavern, South Street,
26th Past Carers Afternoon Group
Kardinya, 12noon – 2pm
OCTOBER
Padbury's Café Restaurant,
1st Past Carers Morning Group
114 Terrace Road, Guildford
Corrie Fisher, 63/444 Marmion St,
24th Past Carers Afternoon Group
Melville, 2pm – 4pm
NOVEMBER
2nd Pamper Day TBC
Moore & Moore Café,
5th Past Carers Morning Group
46 Henry Street, Fremantle
Burrendah Tavern, Burrendah Ave,
28th Past Carers Afternoon Group
Willetton, 12noon – 2pm
DECEMBER
4-6th MND International Symposium CBD
10th Christmas Lunch Nedlands
12th Christmas Cocktail Party TBC
Past Carers Afternoon Group Cheryl Coates, 2 Scouler Way,
19th
– Christmas Party BBQ Bateman, 3pm – 6pm
MND MATTERS Volume 8 Issue 2 – 21Support Us With Your Donation
MEMBERSHIP:
The Motor Neurone Disease Association of WA is a member of MND Australia, with a delegate board. We have
strong links with other MND Associations around Australia and internationally as well as the MND Research
Institute of Australia. If you would like to become a member or renew your membership, please contact the office.
MND MATTERS DIGITAL SUBSCRIPTION:
If you would like to receive the newsletter electronically, please contact the office.
I would like to made a donation to the Motor Neurone Disease Association of WA
First Name: Surname:
Address:
Suburb: State: Postcode:
Phone: Email:
YES! I would like to make a regular donation. If you tick this box we will contact you to arrange this.
Please accept my gift of:
$250 $150 $100 $50 or my choice of $
My cheque/ money order is enclosed and made payable to MNDAWA
Or please debit my credit card: Master Visa
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Signature: Date:
I would like to make my donation in loving memory of:
The Motor Neurone Disease Association of WA
The Niche, 11 Aberdare Road, Nedlands WA 6009 ABN: 49 312 430 982
t: 6457 7355 e: admin@mndawa.asn.au w: www.mndawa.asn.au
22 – MND MATTERS Volume 8 Issue 2You can also read
