Mnd matters Until there is a cure, there is care - 2018 Education and Support Program - Motor Neurone Disease ...
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mnd matters
VOLUME 6, ISSUE 1. FEBRUARY - MARCH 2018
Until there is a cure, there is care.
2018 Education and Caring for the Carer
Support Program pg 10
pg 7- 11 Talking about MND
to children
pg 5-6
www.mndawa.asn.au
INSIDE THIS ISSUE
From the Executive Officer 2
Shed Light on the Matter 3-4
- International Alliance Meetings
- Ross Whiteman, OAM
MND Advisors Corner 5-6
4 Education and Support Program
Christmas Function
7 - 11
12
MNDAWA Events 13
Get Involved 14
Community Fundraising 15 - 17
Change 4 Change 18
In Loving Memory 19 - 20
Notices 21
Calendar of Events 22
12
COMMITTEE OF MANAGEMENT
Chairperson: Karen Smart
Vice-Chairperson: Samar Aoun
Treasurer: Helen Kraus
Secretary: Jan Taylor
Member: Lay Kho
Member: Chau Huynh
16 Member: Scott Ellwood
Member: Anthony Akkari
HONORARY POSITIONS
MND Matters Hon. Solicitor: Mr Peter Murray
Volume 6 Issue 1 Hon. Accountant: Mr Tony Silipo
February - PATRONS
March 2018 Narelda Jacobs
Keith Potger, AO
Kim Hughes
MOTOR NEURONE DISEASE STAFF
ASSOCIATION OF Executive Officer: Andrew Hirst
Fundraising & Events Manager: Cara Ilsley
WESTERN AUSTRALIA Education & Support Coordinator: Lisa Shields
Centre for Neurological Support MND Advisors: Joan Ellis, Sara Duque, Joanne Borrelli,
The Niche - Suite B/11 Aberdare Rd Leanne Bodley
Nedlands WA 6009 MND Community Nurse: Lynne Lomax
Phone: (08) 6457 7355 Accountant: Ling Lee
Fax: (08) 6457 7332 Accounts Receivable & Administration Officer: Kim Rolls,
Email: admin@mndawa.asn.au Anne King
Administration Assistant: Michelle Henderson
1
Welcome Until there
Andrew Hirst is a cure,
there is care.
Executive Officer
Some highlights of the
January - February 2018 issue:
This is a jam packed edition of MND Matters
with all the information you need on our new
Education and Support Groups Program and
Events for 2018. Lisa Shields, our Education
and Support Coordinator surveyed our clients
and their carers late last year to see how we
can best meet the needs of our families and
ensure we tailor the events and support groups
to match these needs. Thank you to everyone
who participated in the survey - your voice helps
us support you. As a result, this year will see
the introduction of new social support groups
Hello everyone, to make it easier to attend and meet people
in your local area. We are also introducing
Let me introduce myself. I am Andrew Hirst and as I the “Out of your Mind” mindfulness training
pen this note I have just completed my first week as to provide carers with the tools to develop
the Executive Officer of MNDAWA. A big thank you to resilience while facing the demands of caring
the Committee in selecting me and to the staff at the for someone living with a terminal illness. Lisa
MNDAWA office for being so welcoming. has put together a comprehensive overview of
all the programs on pages 7 -11.
A brief overview of myself; I originally trained as
Registered Nurse in the UK and emigrated to There are plenty of ‘Save the Dates’ to mark
Australia in 1986. I have worked in and around down in your diaries for 2018, with our first
healthcare my entire career. Most recently I have fundraising event of the year, MNDAWA Dive
been working for St John Ambulance WA based out for Dollars, on Sunday 18th March and the
of Kalgoorlie before moving to St John’s Perth head Walk to d’Feet MND on Sunday 6th May. We
office in Belmont just over 2 years ago. are always overwhelmed by the generosity
and goodwill we receive from the community
I look forward to meeting as many of you as possible and held a Christmas cocktail function to
over the coming months so look out for the bald man acknowledge all those who have supported the
with the funny accent at many of our community MND community in 2017. The evening was well
events and if you are near the office drop in to say enjoyed by all those who attended at the Mt
hello and have a cuppa. Lawley Golf Club on Tuesday 12th December
with photos on page 12.
Kind regards,
We congratulate Mr Ross Whiteman, OAM
in recognition of being awarded an Order of
Australia Medal for his service to people living
with Motor Neurone Disease. An outstanding
accomplishment.
Andrew Hirst Enjoy the edition.
2
Shed Light on the Matter
The International ALS/MND
Meetings
Each year in December the MND Association of video was created welcoming members and
England, Wales, and Northern Ireland organise, in delegates to the meeting. This can be viewed
partnership with the International Alliance of ALS/ online here: https://www.youtube.com/watch?time_
MND Associations, the International ALS/MND continue=11&v=cgGDD8Br7N8.
meetings. This year the meetings were held in
Boston, USA from 4 – 9 December in conjunction The following overview has been extracted from
with host Alliance member ALS TDI and ALS Hope. MND Australia, Overview of International ALS/
MND Meetings written by Carol Birks, CEO - MND
Experts from research and medical communities Australia. For more information on each of the
as well as ALS/MND associations and people living individual meetings and to read the full report visit:
https://www.mndaust.asn.au/News-and-media/
with ALS/MND come together each year to share
Overview-of-International-ALS-MND-Meetings.aspx
new understandings about ALS/MND. The key to
defeating MND lies in fostering strong understanding
of the disease as rapidly as possible. This was the
The ALS/MND International Alliance’s founding
MND Association’s rationale behind the creation of
mission is:
the International Symposium on ALS/MND.
Over the 5 days the meetings included an
International Alliance of ALS/MND Associations “Provide an international
annual meeting, an Ask the Experts session, and an community for ALS/MND
Allied Professionals Forum, concluding in the ALS/
MND International Symposium. This year attracted associations from around the world
a record breaking 1,640 delegates from around the all united in the worldwide fight
world - 25 countries across six continents.
against ALS/MND”
This year marked the 25th Anniversary of the
establishment of the ALS/MND International
Alliance and in recognition of this a celebratory
3
Shed Light on the Matter
Mr Ross Whiteman, OAM
Order of Australia Medal
For service to people
with
Motor Neurone
Disease
people living with MND in Western Australia.
Ross has been a leader in the community under
many banners, including the former CEO of Ray
White Western Australia. Ray White are platinum
sponsors of the Association to this day and continue
to raise much needed funds to support people living
with MND.
A very worthy recognition of the selfless work, time
It is with great honour we congratulate Mr Ross
and service Ross has given to people living MND.
Whiteman, OAM for being awarded with an Order of
Australia Medal on 26th January 2018.
From the Committee of Management, team and
MND Community we congratulate Ross for this
Ross was awarded the medal in recognition for his
outstanding recognition. We are extremely proud of
service to people living with Motor Neurone Disease
your accomplishment.
(MND). The Order of Australia is an order of chivalry
established on 14 February 1975 by Elizabeth II,
Queen of Australia, to recognise Australian citizens
and other persons for achievement or meritorious “A very worthy recognition of the
service.
selfless work, time and service
Ross led the Motor Neurone Disease Association Ross has given to people living
of Western Australia as Chairperson for 14 years
following the passing of his wife, Ann Winifred,
with Motor Neurone Disease”
from MND in 2002. During this time he guided the
Association from strength to strength and initiated
significant advancement in the services provided to
4
from the mnd advisors
The MND Advisors Corner is written by one of
our four MND Advisors. MND Advisors, through
the family support service, offer invaluable
expert guidance and emotional support to those
diagnosed with MND and their families. The
column provides you with information on services,
equipment, facilities, the MND clinics and other
resources to keep you informed. Should you want
further information on any of the following please
do not hesitate to contact the office on 6457 7355
or email admin@mndawa.asn.au.
Our Advisors photographed from left to right;
Leanne Bodley, Joan Ellis, Sara Duque and Jo
Borrelli.
Talking about Motor Neurone Disease
with Children
There is no easy way to inform your children that you MNDAWA has some very useful information
have been diagnosed with Motor Neurone Disease. regarding this difficult issue and provides ideas that
It is an extremely difficult conversation to have and may help with information sharing and managing the
one that needs consideration prior to broaching situation on a day to day basis.
the subject. When and how to tell your children is a
question we often get asked….and one we always • Let your children know how they can help,
struggle to answer, as there is no ‘right way’. that allows them to feel part of your life;
How you tell your children is a very personal • It’s important to have an outside focus and
decision and each family will have their own way not let MND dominate your life;
of dealing with it. There are a few thoughts that will
be shared throughout this article that will hopefully • Everyone will experience grief, let your
assist you with your conversation or provide some children go through the process. Shutting it
conversational tools with which to work with. down will only prolong the grief and not allow
them to ‘walk beside you’….
It has been said that if you can arrange for your
doctor to share the information with your children it A couple of other great ideas when it comes to trying
takes the pressure off you and allows you to be there to read your children’s responses are:
to comfort and support your children. If, however,
that is not possible it is best to tell them in a location • Make an ‘Emotion Thermometer’ and put it
where they don’t feel confronted; somewhere that on the fridge. Put phrases on it like; ‘ask me
allows you to have a ‘side by side’ conversation, what’s wrong’, ‘I need a hug,’ ‘please don’t
walking on the beach or in a park. ask me how I feel’ etc. A fridge magnet can
be used to point to the ‘feelings of the day’.
Some parents find it useful to broach the subject by This is a non-confrontational way for kids to
finding out firstly what their children already know communicate their feelings, allowing you to
about MND. For example you could say, ‘what do address them appropriately.
you understand about Mum’s legs getting tired?’
Then discuss any essential information they don’t • Another easy way for kids to get their feeling
already know. Ensure you check in on how they are across is to have a chart on their bedroom
feeling, give them a hug and reinforce how important door with sayings such as…. ‘I need a hug
it is to talk about feelings. today’; ‘I need a bit of space today’; or ‘Great
day! Let’s do something fun!’
5
One psychologist recommended watching Australian • ‘All For Kids’ – Information about MND for
Story as a nice family thing to do. It provides young children, adolescents and parents –
an opportunity for kids to see how other people Canadian ALS Association www.als.ca/allforkids
cope in difficult situations and manage adverse
circumstances. It can also provide an opportunity to • www.kidshealth.org/kid Lou Gehrig’s
discuss tough circumstances that other people are Disease (ALS) Nemours Foundation – from
facing and address how you as a family are coping America
with your situation.
• Real Stories from people living with
Trying to stay positive will always benefit yourself and MND www.mndassociation.org/life_with_mnd/
your family. If you are having a hard time, reach out experiences_of_MND
to your MND Advisor. They are always there to listen
and support you regardless of the situation and are
also able to provide you with other resources.
Feelings of the Day Board...
Someone once stated;
‘Please ‘I need a
“MND doesn’t stop bad don’t a hug’
things happening - but it I feel ’sk me how
doesn’t stop us doing good ‘Ask me what
things!” is wrong’ s p a c e
b i t o f
If you would like to read more, here are some useful
e e d a ’
links:
‘I n t o d a y
• ‘When Someone Special has Motor
Neurone Disease’ - from the MND Association
of Victoria, (About MND, Information for Kids). ‘Great day! Lets do
www.mnd.asn.au
something fun!’
6
Education and Support
MNDAWA is committed to raising awareness and delivering
information about MND to people living with MND, their families,
allied health professionals and the wider community. MNDAWA
has developed many different programs, workshops, information
evenings, and presentations which are delivered on an ‘as needs’
and ‘requested’ basis.
We recognise that some of our sessions can be confronting and
upsetting, so in 2018 we are partnering with Carers WA to ensure
we are supporting our MND clients, carers, family and friends.
Specialist counsellors will be in attendance and available long
term to assist you throughout your journeys.
- LISA SHIELDS, Education and Support Coordinator
Supporting Your How do we cater
Journey for different
The Motor Neurone Disease Association of Western needs?
Australia Inc. (MNDAWA) organises a range of We try to offer flexibility to suit as many of our clients,
different support groups and events throughout the carers, families and friends. We understand people
year. Some are monthly gatherings and others are have work and family commitments beyond dealing
bi-annual or annual events. MNDAWA’s support with MND.
groups and events enable people living with MND
and their families to feel connected, guided and That is why MNDAWA offer events on weekdays
supported through their journey with MND. The and weekends, as well as during the day and some
different groups and events are listed on the following evening sessions. Hopefully this range of options
pages. Please note that some of the monthly enables our MND families to participate, meet new
functions are planned on week-ends occasionally people, benefit from the wonderful support of others
and dates are advertised well in advance. For more on the same journey while learning more about the
information please contact the office on 6457 7355 disease.
or email admin@mndawa.asn.au
This year we will be establishing ‘social groups’ in a
number of areas around the metropolitan area. It is
hoped that once established, these groups will offer
another avenue of support and connection right on
your doorsteps.
7
Group Programs 2018
Support Groups Support Groups
Get Togethers Carers Lunches
Get Together’s are a wonderful opportunity for those This Carers only support group provides an
living with MND and their loved ones to meet in a opportunity for carers (and family and friends helping
relaxed social environment. This is an opportunity to care for someone living with MND) to meet and
to receive and share information and support with
others. Due to recent survey results indicating a share their experiences, stories and advice; whilst
preference for additional Pamper Days, we will only being supported by the Association. We have four
be hosting two such functions in 2018. lunches planned for the year:
January 21st (Sunday) at Kings Park 2018 Dates:
from 11.30am 20th February:
Please bring picnic rugs or chairs and enjoy our
simple barbeque in the sunshine on the lawn area in The Niche (Passmore Room) 11.30am
front of Zamia Café.
17th April:
December 11th at The Niche, from 11.00am Caffissimo @ WA Maritime Museum 11.30am
Will be our Christmas Luncheon and Secret Santa Including a tour of the museum
Social Support Groups - NEW 17th July:
In response to the client/carer survey we will be Sandalford Caversham Estate Restaurant 11.30am -
coordinating with you all to establish smaller ‘support Including wine tasting
/ social groups’ within your own area. This will save
on travel and transport costs, support your local 16th October:
businesses and provide additional support networks Leapfrogs / Mini Golf 11.30am
for you, closer to home. Championship Mini Golf Cup on offer
WATCH THIS SPACE FOR A GROUP NEAR YOU
You choose the time, the place and the activity.
Global Day Luncheon
Every year the International Alliance of ALS/MND
Associations celebrates 21 June as the global day
of recognition of ALS/MND. June 21 is a solstice – a
turning point – and each year the MND community
undertake a range of activities to express their hope
that this day will be another turning point in the
search for cause, treatment and cure of ALS/MND.
MNDAWA hosts a luncheon for clients, carers,
friends, family and past carers.
8
Education and Support
Support Groups
cont.
Pamper Days
Pamper Days are held to allow people living with
MND, their family and 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 as well. Come along and
enjoy Massage, Reiki, Manicures, Pedicures, Foot
Spas, Facials, Makeovers, KIDZ PLAY ZONE and
much more….
2018 Dates
March 17th
The Niche, Nedlands - 10.00am – 2.00pm
June 9th
Location TBC - 10.00am – 2.00pm
August 18th
Location TBC - 10.00am – 2.00pm
November 17th
Location TBC - 10.00am – 2.00pm
17th March 2018 Please select a MAXIMUM of 3 treatments.
Mark boxes with an X
Pre-book your treatments □□ Massage (Upper body)
for the next Pamper Day □□ Reiki
□□ Reflexology (Mark & Regina)
Would you like to jump the queue??? This year we □□ Foot Spa
are trialling a pre-booking system for the Pamper □□ Massage (Feet, Lower leg)
Days to alleviate a bottleneck at the Registration □□ Manicures
Table. □□ Facials
□□ Makeup
A maximum of 3x treatments, per person, can be □□ Hair Braiding
Pre-Booked. You will then be provided with an
Appointment Card upon arrival and your pre-booked Treatments yet to be confirmed – if there is
treatments will already be written in for you. enough interest, we will organise these.
Please complete this tear off section and return
□□ Pedicures
to the MNDAWA Office or contact Lisa to discuss
□□ Hair Styling (Blow Dry)
further; 6457 7355 or Lisa.Shields@mndawa.asn.au
□□ Hair Cuts (Trim only)
9Group Programs 2018
Caring for the
You Me and MND -
Specialised Carer Education
The You, Me & MND, Carers Course, is designed to
empower carers with the knowledge and confidence
to care for your loved one living with MND, whilst
ensuring you have a strong emotional foundation to
assist you in coming to terms with the changes that
carer
Out of Your Mind -
Mindfulness Training
The Program’s focus is to provide carers, family
are taking place in your life. The program is held three and friends with the tools to develop resilience
times per year with a condensed 2-day program, an while facing the demands of living with a terminal
evening program over six weeks and a five week illness. Designed specifically to restore a sense
daytime program. of perspective and control for people under high
pressure.
The following topics are covered:
• What is MND, who is MNDAWA and how The program is made up of 3 Modules – Mind Health,
can we help? Mind Efficiency and Mind Resilience. The program
• Swallowing, nutrition and breathing will run over a three-month period, inclusive of:
• Speech, communication, assistive • pre and post workshop surveys,
technology • 2 x full days of facilitated Mind
• Moving and transferring techniques Training,
for carers • ongoing communications portals
• Coping with the changes that are throughout
taking place in your life • establishment of an ongoing support
• Stress management / Compassion network.
fatigue
• Advanced health directives and care There is no need to worry about your loved ones
planning living with MND when you attend the training. We are
• And other topics as required….. hosting activities for them simultaneously, to allow
you to commit to attending without worrying about
2018 Dates their needs.
Series 1 Session 1
Tuesdays 6-8pm; 20th & 27th February, 6th, 20th & Friday 13th April - Midday-5pm
27th March, 3rd April Saturday 14th April - Midday – 5pm
Series 2 Session 2
Mondays 10.00am – 4.00pm; 11th & 18th June Friday 25th May Midday – 5pm
Saturday 26th May Midday – 5pm
Series 3
Thursdays 10.00am – midday; 1st, 8th, 15th, 22nd & NOTE: Sessions planned to allow flexibility –
29th November choose a Friday or Saturday
10Education Programs
2018 cont.
Information Evening
Wednesday 9th May, The Niche Conference Room, 6.00 – 8.00pm
MNDAWA holds a minimum of one newly diagnosed information session per annum which is
generally held in the evening and is presented by a neurologist who specialises in Motor Neurone
Disease. The session provides information on MND and gives people living with MND and their
families the opportunity to ask questions about the condition in a supportive environment.
Starting the Conversation
Part 1 – Advanced Health Directives
Specialist guest speakers will guide you gently through the processes involved with developing
Advance Health Directives, Advance Care Plans, Enduring Power of Attorney and Guardianship, Wills
and Capacity.
Carers WA, in partnership with MNDAWA, will have counsellors available during this session.
It is never too early for everyone to start these conversations because once sorted we can all get on
with the important things and live life to the fullest!
Part 2 – Future Planning
Guest speakers will explain the Aged Care puzzle, palliative care and what it means to people with
MND. We will also cover funeral and financial planning as well as what to do with social media
accounts.
Carers WA, in partnership with MNDAWA, will have counsellors available during this session.
2018 DATES
(Part A) - Tuesday 13th March 1.00 - 4.00pm
(Part B) – Friday 6th April 1.00 – 4.00pm
(Part A) – Wednesday 25th July 5.00 – 8.00pm
(Part B) – Wednesday 12th September 5.00 – 8.00pm
Carers WA
At CarersWA - A carer is someone who provides unpaid care and support to family members and
friends who have disability, mental illness, chronic condition, terminal illness, an alcohol or other drug
issue, or who are frail aged.
Carers WA provide counselling services Monday to Friday, 8.30am – 7.30pm. These include;
• Telephone counselling – easily accessible (free from landline), free and ongoing counselling;
• Face-to-face counselling – low-cost sessions are offered in a safe space in East Perth, Joondalup,
Rockingham, Gosnells, Mandurah and Fremantle; and Rural & Remote WA;
• Skype & E-mail counselling – easily accessible, free ongoing counselling;
• Bereavement counselling – for up to 6 months from point of notice.
For support or further inquiries please call the Carers WA Counselling Line on 1800 007 332 or email
chat@carerswa.asn.au
11Christmas
Function 2017
Each year, MNDAWA hold a Christmas Cocktail Function at the Mt Lawley Golf Club to recognise and
celebrate those who have supported the MND community in that year. 2017 bought together over 120
people on Tuesday 12th December and all in attendance seemed to have an enjoyable evening.
Without the generosity and goodwill of the community the MND Association would be unable to
continue our vital family care and support services. We would like to acknowledge and thank every
single individual, community group, company and organisation that supported MNDAWA throughout
2017. Together we can make a difference, and with your help, we do make a difference to people living
with MND and their families. Special mention should be made to the award winners of the evening:
President’s Cup: Ken MacLennan
The President’s Cup is awarded to an individual selected by the Chairperson
who has gone above and beyond for people living with MND and willingly
dedicated their time and expertise to support the work of the Association. We
are indebted to the generosity of time, energy and organisational capacity of
Ken MacLennan. Ken was awarded the President’s Cup in recognition of his
leadership of the Drive for MND event over the past five years; resulting in an
excess of $870,000 being raised for the Association, ensuring ongoing care and
support of our members.
Ken pictured left talking to the participants on the Drive for MND.
Eleanor Mounsher Medal: Greg Hambley
The Eleanor Mounsher medal is awarded to an individual each
year who has shown outstanding commitment to the Association
and willingly dedicating their time and efforts to the cause. Greg
has been at the forefront of community fundraising for over
2 years and during this time he has assisted in raising over
$280,000 for the Association and this amount keeps increasing.
Aside from all his fundraising efforts, Greg is passionate and
committed to supporting MND through volunteering and other
community support.
Greg pictured on the far left presenting a cheque from the Swim
for Jim fundraising event with his family and Cara and Maeve
from MNDAWA.
Volunteer of the Year: Frank Trafela
It is a great privilege to recognise the volunteering efforts of Frank
Trafela. In 2017 alone, Frank donated over 150hours to the
Association in serving people living with MND. He has volunteered
in almost every capacity possible including; bus transport, the craft
group, administration help for the office, kitchen hand at functions,
and fundraising events including the Walk to d’Feet MND and
Street Appeal. Frank is a commited and dedicated volunteer of the
Association, pictured left with Chairperson Karen Smart.
Thank you to all those who supported
the Association during 2017.
12MNDAWA EVENTS
Dive for ONLY A FEW JUMP
SPOTS LEFT!
Dollars Download the registration
pack online:
Rottnest Island
www.divefordollars.com.au
Skydive from Rottnest Island and go ABOVE and BEYOND to raise funds for
people living with Motor Neurone Disease.
Sunday 18th March 2018 - Rottnest Isalnd
For event enquiries contact the office on Proudly supported by:
admin@mndawa.asn.au or call 6457 7355
SAVE THE DATE!!
SUNDAY 6TH MAY 2018
PERRY LAKES - FLOREAT
Walk in Honour, Walk in Memory, Walk in Hope
Registration’s open in February!!
www.walktodfeetwa.com.au
13GET INVOLVED
There are many ways to get involved with fundraising for the Association. You can
choose to hold your own event or take on a challenge to raise funds for people living
with MND. There are also other community events to get involved in and fundraise
through them. Here are just a few events coming up in 2018...
ROTTNEST CHANNEL SWIM - SATURDAY 24TH FEBRUARY
PORT TO PUB SWIM - SATURDAY 17TH MARCH
HBF RUN FOR A REASON - SUNDAY 27TH MAY
CHEVRON CITY TO SURF - SUNDAY 26TH AUGUST
You can also support others in the community who are fundraising for the Association.
Here are some events that others have coming up...
Major Sponsors
Rotary Club of Attadale
and Fremantle’s
CHARITY GOLF DAY - FRIDAY 9TH MARCH 2018
The Rotary Clubs of Attadale and Fremantle will be hosting the fifth annual Charity Golf Day on Friday
9th March 2017 at the Royal Fremantle Golf Club. Funds raised will be donated equally to the Motor
Neurone Disease Association of WA and the Spinnaker Health Research Foundation.
This event is hugely popular every year and as a result has already got a full field of players.
BUT...there are a number of other ways you can contribute to the event:
• You could donate goods or vouchers for raffles, competitions,
auction items and event prizes
• You could sponsor a hole ($250) which enables your business to be promoted
Full details are available upon request from
Co-Sponsors Dr Rod Rate, rrate@tpg.com.au, 0411097333.
FRIDAY’S JETSKIS ARE HOSTING THEIR SECOND
“RIDE 2 ROTTO FOR MND” ON
SATURDAY 10th MARCH 2018
Friday's “Ride 2 Rotto For Motor Neurone Disease” is a unique
opportunity to ride your jetski to Rottnest Island. Friday’s Jetskis
have been lucky enough to be granted approval to hold
this event as this is not normally permitted. By joining the ride
you will raise awareness and much needed funds for Motor
Neurone Disease.
Call Friday's on (08) 9524 5858 or visit www.fridaysjetskis.com.au for full event details.
14Community
CBC CRICKET CLUB GALA DINNER
Jan Taylor, MNDAWA Board Member had the privilege of attending
and giving a speech at the CBC 2017 gala ball held at the Pagoda
Resort on 2 December 2017. Jan and her daughter Leonie enjoyed a
wonderful night with over 100 guests in attendance. The CBC cricket
club certainly did MNDAWA proud with MND cards and cornflowers
at every dinner place setting. Hope puppies, MND pamphlets and
change 4 change tins were also dotted around the venue.
There was a very busy photo booth set
up with those wanting a photo being
asked for a gold coin donation, a silent
auction and a raffle. A wonderful night
thoroughly enjoyed by all that attended.
A special mention to David Nolan - MC,
Emma Gailbrath – Event coordinator and
Aleisha Kerrigan from Everlasting Events for the amazing attention
to detail on the night.
50TH BIRTHDAY PARTY FOR RICHARD
Richard held a 50th birthday bash at the Hillary’s Yacht
Club on Saturday 2nd December. Special mention goes
to Richard’s wife Kylie, who’s brother Greg Maxwell was
diagnosed with MND early 2017. Greg is 56 and currently
lives in Broken Hill with his partner Dianne, where to this
very day he continues to raise money for MND through
charity rides and selling his paintings along with radio
talk back shows raising awareness in Broken Hill and
the surrounding areas. Rather than receive gifts Richard
believed he has everything anybody can ask for, “I thought
raising money for a very worthwhile cause would be more
beneficial and MND of Western Australia was a no brainer.
Happy Birthday and thank you We were so happy that we raised a little over $1,100 on the
Richard from us all here at night.”
MNDAWA.
DARK PHYSIC
PRODUCTIONS
Formed in 2012, Dark Physic PRIME
Productions are an independent MOVERS
live theatre company in Perth. Dark
Physic recently show cased “Carrie”
The Musical during 6 – 21st October
at the Phoenix Theatre in Hamilton MNDAWA recently received a wonderful donation
Hill. MNDAWA was very fortunate from Prime Movers Inc. Prime Movers are an exercise
with Dark Physic donating $1,349.00 group for over 50’s within the Perth metropolitan area
from the proceeds of tickets sales of with approximately 5000 members. Each year during
“Carrie”. This is the 2nd production seniors’ week, Prime Movers have “free” classes
where Dark Physic have very kindly offered to their members and in return members are
supported our Association – a big asked to give a donation to a charity. MNDAWA was
thanks to Ryan McNally and all chosen as their charity of choice with $5,700 being
those involved in the production. donated to MNDAWA. Way to go Prime Movers!
15Fundraising
20-20 SWIM FOR JIM
The 20-20 Swim for Jim fundraising campaign continued on the 21
January at the Grapes and Gallops, the biggest race meeting in Mt
Barker. The Hambley Family who started the campaign in 2015 held
a lunch in the ‘Jim Gilbert Pavilion’, for the first time and hosted 20
people for the day.
They also held a wine auction, selling Magnums of wine from Great
Southern wine producers, this being held for the second year.
Collecting donations, raising funds through the tickets and auction,
the day raised approximately $7,000.
This is the first Grapes and Gallops since Jim Gilbert passed
away from MND. He was one of the instigators in starting this
coming together of the races and a wine festival 11 years ago. He
worked tirelessly every year to make sure the day was a success.
It has been a major event in our town for many years.
A huge thank you to the Mt Barker Turf Club and the Great
Southern Wine producers for their support of our fundraising.
Thank you to Xorro Print and Signage Specialist for providing us
with the banner.
RUBY AND MORGAN’S SHARK TANK WEDDING
Ruby and Morgan tied the knot on Wednesday 17th January - the same
day as their third anniversary. This was no ordinary wedding however, as
they said their vows in a shark tank at AQWA. Ruby and Morgan organised
a wishing well at the reception to collect donations for MNDAWA in lieu of
wedding gifts and raised over $2500 for people living with MND in memory
of Morgan’s father Owen who passed away from MND in late 2015. Wishing
Ruby and Morgan many happy years and a fun filled future together.
CONGRATULATIONS
GAEWYN AND CRAIG
MOVIE NIGHT On 26th November 2017 Craig
and Gaewyn said I do at an
Sarah who operates intimate wedding with friends
her home hairdressing and family. They had a beautiful
salon came up with Sunday afternoon wedding at
the idea of holding an Mandurah Quays, celebrating
outdoor movie night with cocktails and canapés.
for her clients to raise Gaewyn explained that “we
funds for MNDAWA. The were so blessed in sharing our
movie night was held day with my wonderful loving
on the 7th December in brother Drew (who is living with
honour of her sister-in- MND)”. After 12 years together,
law has MND. The night Craig and Gaewyn decided presents were not necessary but we suggested
was a great success donations to MNDAWA. Thank you Craig and Gaewyn for raising over
raising over $264 for $600 for people living with MND. Enjoy many more years together now as
MNDAWA. husband and wife!
16Community
Fundraising cont.
PAT’S RIDE
The Northern Knights motorcycle group organised an inaugural
ride on 26 November 2017 to remember Patricia Stevens who
sadly passed away after suffering from Motor Neurone Disease.
Pat and her husband Pete, who also passed away recently, loved
going out on their Virago motorcycle and side car affectionately
known as “A Bit On The Side” at every opportunity with their
motorcycle mates. The ride commenced at Lakeside Joondalup
shopping centre and riders travelled the back roads to Gin Gin and
then finished the ride at the Bindoon Bakehaus & Café. About 40 riders participated in the ride including
riders from the Joondalup Ulyses group. The group raised $947 from donations collected and all proceeds
were given the The Motor Neurone Disease Association of WA. Thank you to the Northern Knights and
supporters.
CAROLS FOR A CAUSE -
RED DRESS CHOIR
The Red Dress Choir are a team of singers who came together
at Christmas time to perform for their local community and
beyond. They performed 22 shows in 23 days which is an
incredible effort and chose to raise money for 4 charities;
MNDAWA, Alzheimers WA, Camp Kulin and Starlight Children’s
Foundation, which are all close to the choir members hearts,
having a personal connection to each cause. The Red Dress
Choir raised $2335.25 for MNDAWA alone in memory of
Malcolm Barbera who passed away from MND in 2017.
‘Monty’ the 10month old Labradoodle also accompanied the choir to their shows and was ‘Santa’s Dog’
offering selfies for a small donation - thanks for your support Monty and the Red Dress Choir.
thank We have so many generous groups and individuals who fundraise
you
for the Association throughout the year and are so very grateful
for all there support. We could not continue our vital family care
and support services without the community’s generosity and
goodwill. We always like to make mention of those who fundraise
for the Association in our newsletter and share the stories with the
MND community about everyone who is working together to make
a difference to the lives of those living with MND. If you have organised a fundraiser and would like your
photo or story included in the next MND Matters please contact the office on phone: 6457 7355 or email:
admin@mndawa.asn.au
17Change 4
Change
TOGETHER WE CAN MAKE
A DIFFERENCE.
We would like to acknowledge our Change 4 Change
collectors and the individuals, communities and
companies that have our Blue MND Cornflower boxes
to raise awareness and funds for the Association.
Change 4 Change Tins
Moira Laurence
Lisa Shields
Patti Robertson
Patricia Simmonds
Yahava Koffee
Harvey Norman Western Australia Cornflowers
Mr Charles Sims
If you would like to put a Change 4 Change donation Freedom Riders WA
tin or Blue Cornflower box in your office or shop Staffordshire Bull Terrier Club of Western
front please contact the office on 6457 7355 or email Australia Inc.
Christmas Appeal
admin@mndawa.asn.au.
THANK YOU to all 177 people who have generously donated to our Christmas Appeal. The campaign
has raised close to $16,000 to date which will make a significant difference to people living with Motor
Neurone Disease and their families in WA.
Each year we hold two donation appeals which is a very important part of our fundraising income to
enable us to fund our services outside of the Government funded MND Advisory Service, including
support groups, equipment, the patient transport service, and specialised funding to support our families
living with MND.
If you would like to donate to the Christmas Appeal you can do so online by visiting www.mndawa.asn.
au or calling the office on 6457 7355.
18We send our heartfelt condolences to the families of...
Christine Coughlan Robert Iburg
Irene D’Cruz Ross Jackson
Damian Delaney Mark Smithurst
Yvonne Emberson Cornelia Van Der Putten
Francesca Fuiello Anita Weis
Donations made in Loving Memory of...
David Aggiss Frank Bussell Dawn Flink
Lorraine Aikins Thomas Cave William Forward
Cynthia Anderson Lesley Chamberlain Wayne Foulds
Stephen Bailey Sandra Cocks Betty Gardiner
Albert Bantleman Allan Conroy George Gardiner
Alicia Bickford Jane D’Adhemar Eileen Gardner
Les Biffin Enrica De Paolis David Glenister
Pamela Blake Peter Dibble Peter Godfrey
Doug Bolton Dianne Doble Ken Gormley
Stephen Brown Maree Finlay
19Owen Griffiths Sandra Marendoli Michael (Mick) Smith
Spiro Grouzis Rod McIlroy Pat Stevens
Gladys Harris John McLeod Robert Taylor
Wendy Hayes Stella McMahon Patricia Thomas
Robert Haynes Ron McNamara Anders Thomsen
Mary Hayward Maggie Milne Joy Vause
Jackie Hibbert Desmond G Nelson Graham Waddingham
Beth Higginson Jean Nilon Heather Wallace
David Holly Bernard O’Mara Faye Walsh
Jean Jones Frank O’Mara Owen Ward
Peter Kearney Valerie Rangitaawa Marian Watson
Vivienne Knight Keith Rimmer Janet Why
Winifred Leach Gwynva Rumball Elsa Wilkins
Frank Leahy Howard Rumball Peter Wooldridge
Eric Lockyer Maxwell Rumball Don Wright
Tony Lorian Barbara Selby Ursula Yonge
Ena Rose MacPherson Iris Short Steven Young
Roy Mahony Fred Sipman
Dennis Mahy Michael Smith
20i notices
After a fulfilling four and half years working as the Association’s Fundraising
and Events Manager, it is time for me to say farewell. It has been a privilege
Farewell to have worked with the MNDAWA team and Committee of Management
in raising vital funds and awareness for people living with MND and I have
Cara been honoured to have made so many treasured friendships and working
partnerships over the years.
It has been an exciting (and somewhat challenging) journey developing
the fundraising and events portfolio during my time here. Some of my
highlights include; building the Walk to d’Feet MND to be the Association’s
biggest annual community event, being a part of the inaugural MND Drive
which is now (successfully) in its sixth year and my involvement with
the MND community, sharing in many new fundraising campaigns and
initiatives – notably the Ice Bucket Challenge – which changed MND
awareness overnight.
I will be moving on to a new role within the not-for-profit sector working for
the Royal Flying Doctor Service WA as their Events Manager. This is an
exciting move for me, yet touched with sadness, as I say goodbye to the
great team here and the MND Community.
I wish Andrew, the team and Committee of Management continued success
in providing specialised care and support to families living with MND. Until
there is a cure, there is care and together we can make a difference.
Bye for now, Cara.
Don’t forget we have partnered with Two Birdz an online shopping
site that has access to all your favourite stores in one click. For every
purchase you make online through our site, we will receive a % as
a donation. With hundreds of different online stores to choose from
and the opportunity to support MNDAWA when you do your online
shopping its “Two Birdz” with one simple click.
www.mndawa.twobirdz.com.au
21MNDAWA EVENTS CALENDAR
FEBRUARY - MARCH 2018
Date Event Time Venue and Details
FEBRUARY
Thursday 1st Volunteer Meeting 1pm – 4pm Board Room
Friday 2nd Volunteer Bus 1pm – 4pm Board Room
Training
Tuesday 6th Morning group Past 10am-12pm Chocolateria San Churro
Carers Sorrento Quay, Hillary’s Boat Harbour
Tuesday 20th You, Me & MND 6pm – 8pm Board Room
Tuesday 20th Carers Lunch 11.30am – 1.00pm Passmore Room
Thursday 22nd Afternoon group Past 2pm - 4pm Place of Reflection Kings Park. Bring afternoon
Carers tea, drinks & chairs. Phone Heather 0418 929
672
Tuesday 27th You, Me & MND 6pm – 8pm Board Room
MARCH
Tuesday 6th You, Me & MND 6pm – 8pm Board Room
Tuesday 6th Morning group Past 10am -12pm Zamia Café,
Carers May Drive, Kings Park
Friday 9th Charity Golf Day 12pm-7pm Royal Fremantle Golf Course
(Rotary Club of
Attadale)
Tuesday 13th Starting the 1pm – 4pm TBC
Conversation Part A
Saturday 17th Pamper Day 10am-2pm Passmore Room & Conference Room, Board
room, Foyer & 1st Floor meeting room
Sunday 18th Dive for Dollars Day event Rottnest Island
Tuesday 20th You, Me & MND 6pm – 8pm Board Room
Thursday 22nd Afternoon group Past 2pm - 4pm 120/27 Pearson Ave, Success
Carers Home of Helen Schulz; phone: 9498 6719
Tuesday 27th You, Me & MND 6pm – 8pm Board Room
APRIL
Tuesday 3rd You, Me & MND 6pm – 8pm Board Room
Tuesday 3rd Morning group Past 10am -12pm Baby Grumpy Sailor
Carers
Friday 6th Starting the 1pm - 4pm Conference Room
Conversation Part B
Friday 13th Out of Your Mind 12pm - 5pm Conference Room
Saturday 14th Out of Your Mind 12pm - 5pm Conference Room
Tuesday 17th Carers Lunch 11:30am - 1pm Caffossimo @ WA Maritime Museum, Victoria
Quay, Fremantle.
Thursday 26th Afternoon Past Carers 2pm - 4pm 66/7 Clere Pass, Canning Vale
Group Home of Janne Parsell, phone: 6254 2536
22.
Motor Neurone Disease Association of WA
The Niche, Suite B, 11 Aberdare Road,
Nedlands, WA 6009
Phone: 6457 7355
Email: admin@mndawa.asn.au
Web: www.mndawa,asn.au
ABN: 49 312 430 982
MEMBERSHIP:
MNDAWA is a member of MND Australia, with a delegate Board. It has strong links with other MND Associations
around Australia and internationally, and the MND Research Institute of Australia. If you would like to become
a member or renew your membership please contact the office.
DISCLAIMER:
The articles provided in this newsletter sometimes contain personal opinions that may not reflect Board policy.
Research articles are selected from reliable sources, we do our best to ensure currency and accuracy.
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