MND Matters Until there is a cure, there is care - Volume 6, Issue 2. April - June 2018 - Motor Neurone Disease ...
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MND Matters
Volume 6, Issue 2. April - June 2018
Until there is a cure, there is care
From the
Executive Officer
Dear Members and Friends,
I am now 5 months into my position as
the Executive Officer of MNDAWA and
loving every minute of it. I look forward
to coming to work every day and that
is largely because of the wonderful
people I get to work with and the people
I am fortunate enough to represent.
It seems timely to take a look at
what MNDAWA does and what
differentiates us from us groups.
Like everyone, we want to see a world
families, so we will be working hard over
without MND but “until there is a cure,
the next few years to raise money to fund
there is care.” We are about the here
this. I thank you for your support and
and now. We are about supporting
encourage you to keep that support going.
people living with MND to get the
best advice and achieve the best care
As a final note please remember we
and management of their disease.
improve by getting feedback from you.
We walk alongside our clients and
Our annual survey will be going out soon
their families through their journey.
and the results of that will help us to
shape the organisation as we go forward
At present we receive some funding
from the Health Dept for which we are
If you have any thoughts or suggestions
extremely grateful. However, a large
call me on 08 6457 7386 or email
percentage of what we do is funded by
me on andrew.hirst@mndawa.asn.
the generosity of the West Australian
au. I would love to hear from you.
public through fund raisers such as
the Walk to D’Feet MND. We want
to improve and increase the care and Andrew Hirst
support we give to our clients and their Executive Officer
Committee of Management
Chairperson: Karen Smart
Vice-Chairperson: Samar Aoun
Treasurer: Helen Kraus
Secretary: Jan Taylor
Members: Anthony Akkari, Scott
Ellwood, Lay Kho & Chau Huyhn
Honrary Positions
Hon. Solicitor: Mr Peter Murray
Hon. Accountant: Mr Tony Silipo
Patrons
Kim Hughes
Narelda Jacobs
Keith Potger, AO
Staff
Executive Officer: Andrew Hirst
Fundraising and Events Manager: Sarah Wiley
Education and Support Coordinator: Lisa Shields
MND Advisors: Joan Ellis, Joanne Borrelli, Leanne Bodley
Accounts Receivable and Administration Officer: Zoe Kinahan
Administration Assistant: Wendy Wilmot
MND Nurse: Lynne Lomax
Accountant: Ling Lee
A Warm Welcome Sarah joins us from Cancer Council
WA as the new Fundraising and Events
to Sarah Wiley Manager. With nearly 20 years in
the industry Sarah is confident that
her experience and knowledge will
help take MNDAWA to new heights!
Sarah’s first event was Dive for Dollars
and she was blown away by the
dedication, positivity and commitment
to the association shown by all involved.
Exciting times are ahead! Welcome
to the team Sarah! You can email
Sarah at sarah.wiley@mndawa.asn.au
Get Involved
Hike for Health 2019
W e
are so excited to announce
that we will be hosting our first
seeming to tell a story of war and adventure.
Immerse yourself in the ancient history of this
World Wonder, explore Beijing’s Forbidden
‘challenge event’ in May 2019 City and the Temple of Heaven, and experience
- Great Wall of China Trek. the poignancy of Tiananmen Square.
You’ll travel through history to the More details will be available soon
very heart of China’s ancient culture. please ema i l ad mi n@mndawa .com.
au to receive an information pack .
Starting in Beijing, you’ll quickly
swap the hustle and bustle of the
city for the majesty of the Great Annual Quiz Night
Wall. You will challenge yourself Saturday 11 August 2018
like never before as you trek on South Perth Community Centre
remote and unrestored paths, www.trybooking.com/wcnc
between mountains, through
local villages and across rolling
farmlands. With the support of
our expert guides, you’ll explore
the many facets of the Great
Wall, deciphering the ancient
stories and poems etched into
its watchtowers, every brick
Dive for
Dollars
Our sincerest thanks go out to the 13 intrepid
skydivers and their supporters for raising
over $50,000 and for making the 1st Dive for
Dollars Rottnest a day to be remembered!
You can register for 2019 at
www.divefordollarsrottnest.com.au
Adviso
Corner
Genetic Testing Why is this relevant?
and Familial Motor If we can test the presence of genetic
Neurone Disease mutations in a person diagnosed with
familial MND, then other family
Following the documentary on ABC members can also be tested to see if
about Scientist, Justin Yerbury’s fight they also have the same mutation. But
to eradicate MND, whilst living with for those who do have the mutation,
‘familial’ MND himself, we have received it isn’t possible to predict when the
several calls about genetic testing. first symptoms will appear and some
people with the mutation may never
Some Facts
go on to develop any symptoms.
90% of people with MND are said It is also possible to use an advanced
to have ‘sporadic’ MND and they are screening technique called pre-
the only person in the family affected implantation genetic diagnosis
with the disease. In 10% of cases, there (PGD) which in conjunction with
is a ‘familial’ link, where more than IVF, which can identify whether an
one person in the family is affected. embryo has inherited the familial
This is due to a genetic mutation i.e. MND gene (MNDA Australia).
there is an error in the genetic code
which causes a gene to work abnormally. Testing for the gene
Since 1993, there have been several genetic ‘Predictive testing’ is the term used
mutations discovered as the cause of
when a well person who has no
MND and researchers continue in their
search to find mutations in other genes.
symptoms of the disease wants to
They are also striving to understand how find out if they have the familial
the known genetic faults cause MND, gene for MND. This type of testing
to work out how many of those with a is only available once the genetic
faulty gene will actually go on to develop mutation has already been identified
MND later in life, and to discover ways in their relative who has MND.
of preventing and treating familial and There are many reasons why someone
sporadic MND. (MNDA Australia). might want or not want to know if they
have an MND related genetic mutation.
ors
Our MND Advisors provide exceptional guidance and emotional
support to those diagnosed with MND and their families
If you would like further information please don’t hesitate to call
the advisors on 6457 7355 or email admin@mndawa.asn.au
r
This edition is written by Joanne Borrelli
Our advisors are Leanne Bodley, Joan Ellis, Sara Duque and
Joanne Borrelli
For this reason, it is important that you you have a familial gene for MND.
speak to your neurologist or nurse in For more general information on
the first instance or speak to your MND familial MND and genetic testing,
Advisor who can liaise with the medical please visit https://www.mndaust.
team on your behalf. If appropriate, asn.au/Get-informed/I-have-MND/
you can be referred for official testing Familial-MND-and-genetic-testing.aspx
where you can be provided with
support and counselling and explore
the pros and cons of finding out whether
Farewell & Thank You
I wanted to take this opportunity
to say farewell to my clients,
colleagues and everyone I have had
the absolute pleasure working with
throughout my time at MNDAWA.
I came into the MND Advisory role
in December 2016, with a strong
passion to work with people with registered occupational
neurological conditions to maintain and t herapist, a nd t he time has
enhance their quality of life; and I can come for me to move forward
honestly say that the experiences and and develop my clinical skills in
knowledge gained has been invaluable. neurological occupational therapy.
As an MND Advisor, the strength and So it is with sadness, but also anticipation
determination of so many of the clients for new things to come, that I say goodbye
I have worked with has truly astounded to my MND family. I look forward to
me and I feel so blessed to have had seeing MNDAWA continue to grow and
the opportunity to meet such inspiring flourish as an organisation that strives to
individuals facing challenges that many enhance the quality of life for individuals
of us would struggle to overcome. living with MND and their loved ones.
As some of you are aware, I am a Bye for now, Sara Duque
Fundraising in
A Night Under The Stars
Sonia and Luke Porter’s fundraising dinner in
Manjimup raised over $10,000. Held in their backyard
with 40 people attending it was a night to remember.
Sonia said that she hosted the dinner
to raise money for M N DAWA ,
“not only for what they do for my family, but for others
too,” following her Dad being diagnosed with MND.
Swim for Jim - Virtual Rottnest Swim
The Mount Barker Barracudas
had 4 teams competiting in the
official Virtual Rotto Swim.
Bragging rights went to “Cool
Name Pending” who completed
the 20kms in 5hrs and 46mins.
Bridgetown
Cricket Club
The Bridgetown Cricket Club
held a charity cricket match in
February and raised over $12,000
in memory of Noelene Glancy.
Thank you to everyone involved
the Community
Rotary Club Golf Day
The Rotary Clubs of Attadale and Fremantle held
their Annual Golf Day for MND in March and
raised over $55,000 to be shared between MNDAWA
and the Spinnaker Health Research Foundation.
The weather was beautiful and a great day was had by all involved. Many
thanks to the Major Sponsors PRM Property and Haslam International
Friday’s Ride 2 Rotto
Congratulations to the team at Friday’s
Jetskis for their 2nd Ride 2 Rotto. Despite
very challenging conditions the event
exceeded all expectations and raised over
$11,000 and an amazing time was had by
all who were lucky enough to take part!
Fundr
www.entertainmentbook.com.au/orderbooks/88b502
Watch This Space
Sarah was lucky enough
to have the opportunity to
‘pitch’ a fundraising idea to
students from the John Curtin
Leadership Academy. Each
year the group choose small
selection of not for profit events
to project manage.
The students loved Sarah’s idea
A FUNDRAISING CONCERT FOR
MOTOR NEURONE DISEASE so ‘watch this space’ for more
OCTOBER 2018 information on the MND
Music Fest later this year.
ALL PROCEEDS TO MNDAWAraising
REGISTRATIONS NOW OPEN!
For more details visit
www.divefordollarsrottnest.com.au
or call Sarah on 6457 7355
MND Advisor Jo and Fundraising and
Events Manager Sarah took part in HBF
Run for a Reason on Sunday 26 May.
Although their time certainly wasn’t
something to be proud of, they both had
a big smile on their face at the finish line!
MNDAWA running vests are now in stock.
Free for anyone raising over $750 in a
running event or you can purchase one for
$40.
Want to host a fundraising event for
MNDAWA?
Contact Sarah, our Fundraising and Events Manager, on 6457 7355 to
get an Authority to Fundraise letter and see how the Association can
support you with marketing collateral, merchandise and fundraising
ideas or guidance.Education a Equipment Funding Announced We recently received the wonderful news that FightMND had approved our equipment funding applications to the tune of $150,000. This new equipment is desperately needed by our clients to support their quality of life, allowing them to remain in their own homes for as long as possible. This year the funding was limited to ventilation and assistive technology equipment, but these are pricey pieces of technology, so we are very grateful for the new additions. The equipment started arriving shortly after the announcement and the remaining items will be available to clients by the end of May. We have been f unded for t he fol low ing; 14 x Resmed Lumis 150-ST Non invasive ventilation machines which are vital to assist our clients with breathing both at night and during the day. We have already allocated 3 of these new machines. 7 x Cough Assist Machines which help our clients remove stubborn mucus when cough and diaphragm muscles deteriorate. Two of these new machines have already been allocated to clients. Loads of assistive technology for the CATS team to use when making modifications to wheelchairs, beds and house hold modifications; including some Tobii Eye Mobiles, just like Professor Yerbury uses. MNDAWA would like to express our gratitude to FightMND for supporting our association and clients with funding for new equipment once again.
and Support
You, Me & 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
are taking place in your life. The program is held three times per year with a condensed
2 day program, an evening programme over 6 weeks and a 5 week daytime program.
The following topics are covered:
• What is MND, who is MNDAWA and how can we help?
• Swallowing, nutrition and breathing
• Speech, communication and assistive
technology
• Moving and transferring techniques
for carers
• Coping with the changes that are
taking place in your life
• Stress management and compassion
fatigue
• Advanced Health Directives and care
planning
• Other topics as required
Series 2
Mondays 10am-4pm; 11 & 18 June
Series 3
Thursdays 10am-12pm; 1, 8, 15, 22 & 29 NovemberPampe
er Days
Pamper Day - August 18
Hyatt Regency, Adelaide Terrace, Perth
Pamper Days are held to allow people living with MND,
their family and friends to feel extremely special and
have some wel l ea r ned rela x at ion a nd pa mper i ng.
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,
foot spas, facials, makeovers, KIDZ Play Zone and much more...
Would you like to jump the queue? To alleviate the bottlenecks at the
registration table, a maximum of 3 x treatments per person can be pre-
booked. You will then be provided with an appointment card upon
arrival and your pre-booked treatments will already be written in for you.
- - - - - - - - - - - - - - - - - - - -
Please complete this tear off section and return to our office or contact
Lisa to discuss further on 6457 7355 or admin@mndawa.asn.au.
Massage (upper body) Reiki
Massage (feet and lower leg) Foot Spa
Reflexology Manicure
Facial Makeup
Hair Braiding
Name: _____________________________________________________________________________Education a
Global Day 2018
Each 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 for ALS/MND.
This year’s event for clients, carers, friends, family and past carers will
be held at Perth Zoo. This will be a casual get together with a light
lunch and then you have the chance
to enjoy the zoo with your guests.
Please email us at admin@
mndawa.asn.au or call 6457 7355
to let us know if you would like
to attend. The event is free for all
clients plus one guest. Additional
people are most welcome at
the discounted cost of $15 per person. RSVP by Friday 15 Juneand Support
Starting the Conversation
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, financial planning, funeral planning and Centrelink.
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!
Wednesday 25th July 5pm-8pm
Wednesday 12th September 5pm-8pm
To reserve your place please call 6457 7355 or email
admin@mndawa.asn.auDo you have some spare time?
Are you looking to give back or make a difference?
Volunteers are our lifeline - they assist us to make a difference to the
lives of people living with MND. We rely on the goodwill of many
to support us in our work.
There are many ways in which your expertise and thoughtfulness
could do so much to help support both the Association and families
living with this devastating disease.
Below are just some of the volunteer tasks that may appeal to you:
Fundraising
Events/ Project Management
Business Administration/ IT
Special Events (Walk to D’Feet MND, Street Appeal, Quiz Night)
Pamper Days
Client Transport
If you feel you can help please call us on 6457 7355 or
email admin@mndawa.asn.auThank you for your support... more to come next issue!
We send our heartfelt condolences
to the families of...
Laurie Baxter
Leonie Brown
Lesley Dimoff
Hendrik (Hennie) Hartman
Jason Hartland
Malcolm McKenzie
Trevor Newby
Stuart Pharoah
Roslyn Reynolds
Glenys Richards
Barbara Roach
Sarah Shields
Donations made in Loving Memory of...
Lorraine Aiken
Rosie Beaunch
Christina Bianchini
Roy Brown
Christine Coughlan
Damian Delaney
Jocelyn Douglas
Yvonne EmbersonThomas Fox
Francesca Fuiello
Noelene Glancy
Hennie Hartman
Dorothy Henderson
Mary Healy
John Hendrie
Elizabeth Johnson
Mitchell Lewis
Robbie Mailey
Angelo Mavromatis
Maggie Milne
Leslie Malcolm Nielsen
Les O’Neil
Julia Pantelich
Glenys Richards
Jan Ritchie
Barbara Roach
Frances Stansfield
Barry Sturrock
Robin Turvey
Ann Whiteman
Peter Wooldridge
Steven YoungEVENTS CALENDAR
June - August 2018
Date Event Time Venue
June
Friday 15 Street Appeal 7am-3pm Perth CBD
Monday 18 You, Me & MND 10am-4pm Board Room, The Niche
Thursday 21 Global Day 10am-2pm Perth Zoo, 20, Labouchere Rd,
SOUTH PERTH
Thursday 28 Afternoon Group Past 2pm-4pm 14, Blencowe Street, WEST
Carers LEEDERVILLE
July
Tuesday 3 Morning Group Past 10am-12pm The Wild Fig, 190, The Esplanade,
Carers SCARBOROUGH
Tuesday 17 Carers Lunch 11.30am- Sandalford Estate Restaurant, 3210,
1pm West Swan Road, CAVERSHAM
Wednesday Starting the 5pm-8pm Conference Room, The Niche
25 Conversation
August
Tuesday 7 Morning Group Past 10am-12pm The Little Pantry, 206, Nicholson
Carers Road, SHENTON PARK
Saturday 11 Let’s Get Quizzical For 7pm-10pm South Perth Community Centre
MND - Quiz Night
Saturday 18 Pamper Day 10am-2pm TBC
Tursday 23 Afternoon Group Past 2pm-4pm 11, Masefield Avenue, NORTH
Carers LAKE
Monday 26 Ask the Experts 1pm-4pm Conference Room, The NicheThe 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:
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.
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you to arrange this.
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