January – February 2016
Your
stories:
Four deaths
Research Update: 26th International Symposium
on ALS/MND in Orlando
MNDNews | January – February 2016
Page 2
MND Victoria
265 Canterbury Road (PO Box 23)
Canterbury VIC 3126
Phone: (03) 9830 2122
Freecall: 1800 806 632
Fax: (03) 9830 2228
Email: [email protected]
Website: www.mnd.asn.au
Facebook: www.facebook.com/MNDVic
Twitter: www.twitter.com/MNDVic
ABN 44-113-484-160
Reg. Assoc. No. A7518
Patrons
Lou Richards
Mr Justice John Winneke AM QC
State Council 2015 - 2016
President - Eric Mayne
Hon. Treasurer - David Lamperd
David Ali
Duncan Bayly
Katherine Barnett
Christopher Beeny
Barry Gunning
Andrew Marshall
Wayne Pfeiffer
Working towards a world
without motor neurone disease
Support Groups
Western Metro
Last Monday each month at 12.30 pm.
Mrs Christine Robson, (03) 9379 7715.
Barwon Region
St David's Hall, Aphrasia St, Newtown.
First Monday every second month at 12 noon.
Rev. Ian Parton, (03) 5241 9344.
Ballarat Region
Meets at various locations around Ballarat.
Contact: David Kerley (MND Victoria)
Tel: (03) 9830 2122 or 1800 806 632.
Contents
From the desk of the CEO 3
Support Services 4
Your stories: Four deaths 5
Group Programs 6
Research 8-9
Volunteer News 10-11
Awareness & Fundraising 11-14
Helpful hints 15
Donations 15
Events Calendar 16
Staff
Chief Executive Officer: Rodney Harris
Office Manager: Peter Allen
Office Assistant: Babita Narayan
Manager Fundraising: Kathy Nightingale
Manager Support Services: Julie McConnell
Coordinator Support Services:
Janette McDonald
Regional Advisors
Ruth McEvoy Northern & Western Metro
Elizabeth Crask East & Northern Metro
Lesley Burcher Inner East & Inner South Metro
Eric Kelly Hume & Loddon-Mallee
Megan Scott Grampians
Jenny Waites Outer South Metro & Gippsland
Karyn Hobday Outer West & Barwon
Alia Turnidge Support Service Officer
Equipment Service: David Harkin (Coordinator),
Kathy Walker, Alia Turnidge
Coordinator Volunteer Programs:
Leanne Conway
Coordinator Information and Resourcing:
David Kerley
Information and Resourcing Officer:
Vanessa McTackett
Information and Development Officer (digital
communications): Heidi Bryce
MNDNews | January – February 2016
Page 3
Welcome to 2016 – a year to hope that the
scientists find cause, treatment and cure of
this rotten disease.
In this newsletter you will receive “Advance”, the
newsletter of the MND Research Institute of
Australia (MNDRIA). MND Victoria raises funds for
investment into research and those funds are
managed and applied by MNDRIA. The current
newsletter announced that over $5 million was
awarded for new MNDRIA Grants. The allocation
of this funding is a result of contributions from
State MND Associations, donors and bequests,
and a significant donation of $1.75 million by the
Cure for MND Foundation. An additional donation
of $1 million from Betty and John Laidlaw will be
invested prior to 30 June 2016.
“Advance” provides an outline of the funds
allocated, the researchers and their projects. We
wish them every success.
Until cause, treatment and cure is found, care for
people living with MND is essential, and MND
Victoria remains focussed on providing and
promoting the best possible care and support for
people living with MND.
You may be aware that I have been off on sick
leave for the last 4 months. I am back part time for
January, and then full time in February, all things
being equal. I would like to thank Julie McConnell
for stepping in to the CEO role with no notice and
no help from me, and congratulate the whole MND
team for “carrying on regardless”. They have all
done a wonderful job, which demonstrates the
depth of knowledge, skill, and application that we
have in the Association. We have a great team
working for you.
I am sure you will have all watched the Fading
Symphony, Tim Minchin’s powerful performance of
“Don’t Dream it’s Over” with the Sydney Symphony
Orchestra which has raised over $50,000 for care
and research across Australia and had a reach of
over 1.5 million people just on Facebook alone.
You can watch the video online at: https://
thefadingsymphony.com/
“Georgy Girl” has hit the stage, and we thank the
show’s producers and Her Majesty’s Theatre for
permission to collect donations at selected
performances, for the mention of MND in the script
by author Patrick Edgeworth, and the inclusion of
an advertisement in the musical’s program. Judith
and the Seekers have been long-time supporters
of the Association and the fight against MND. We
wish the show and the cast a very successful and
enjoyable season.
I know it is early but MND Week is coming. We will
be looking for people who want to tell their story to
the public via the media and in print. More
information will be in the next newsletter, but think
about how you can help raise recognition of MND
and the fight against it. Personal stories are the
best way to share our message.
My illness has given me a personal perspective
and refreshed understanding of how important
care and support is for people with unmet needs.
We all need people around us to provide care and
support. From the professional services of health
care professionals to the emotional support of
friends, neighbours and colleagues, it takes a
team. MND Victoria is proud to be part of your
team fighting MND.
Until next time.
Rod Harris, CEO (again)
From the desk of the CEO
MND Information Session
We warmly invite people with MND,
their family and friends to an
Information Session about MND.
10.30am Saturday, 19 March at MND
Victoria, 265 Canterbury Road, Canterbury.
Please RSVP by Friday 18 March 2016.
Phone: (03) 9830 2122, 1800 806 632 or
Email: [email protected]
If you are unable to attend, the next session
is on: Thursday, 5th April 2016.
The location of our MND Information Sessions
is flexible—please email [email protected] for
further information.
MNDNews | January – February 2016
Page 4
Hello and best wishes for 2016 to all our readers.
I hope you have enjoyed the holiday season and
had some happy times.
We were all delighted to welcome our CEO,
Rod Harris, back to work after the holiday
break. He is looking remarkably well and we aim
for him to stay that way.
At the end of 2015 we farewelled Sue Sweeney,
Regional Advisor based in Benalla, as she
headed off to retirement. Sue has been an
integral part of our team for more than four years
and will be greatly missed by both staff and her
clients. With her bright and sunny personality,
excellent skills and experience and dedication to
improving outcomes for people living with MND
she has been a valuable and valued colleague,
friend and resource for us all. Unfortunately, just
prior to commencing her retirement Sue became
unwell. She is currently having medical care, so
her plans, which include lots of travel, are on hold
for the time being. We hope this will be a
temporary setback only and wish her well always.
Megan Scott has been appointed to fill the
vacancy left by Sue’s retirement and will
commence in her new position at the beginning of
February. Those of you who are associated with
Calvary Health Care Bethlehem may already
know Megan as she has worked there as a nurse
in community and clinical settings for the past
seven years. Megan will bring much knowledge
and experience to the Regional Advisor position
and is a welcomed addition to the Support
Services team. She will be based in the Ballarat
area and work with Eric Kelly and Karyn Hobday
in a part-time role to support people living with
MND in Northern and Western Victoria and Outer
West Metropolitan Melbourne. Clients will be kept
advised should there be any change to their
current Regional Advisor support.
Plans for the further roll out of the NDIS in
Victoria in 2016 are underway. The roll out is
scheduled to commence in the local government
areas of Banyule, Darebin, Nillumbik, Whittlesea
and Yarra in North East Metropolitan Melbourne
on 1 July. People with a disability living in these
areas who meet the NDIS eligibility criteria,
including being under 65, will gradually be
transitioned into the scheme. More detailed
information will be provided to our eligible clients
as it becomes available. You can also read about
the roll out and eligibility on the NDIS webpage at
this address http://www.ndis.gov.au/about-us/
our-sites/vic#nor.
It is likely that we will experience hot weather
during February. Please take care in the heat.
During times of high temperature it is important to
keep as cool as possible, drink plenty of water,
restrict your outdoor activities to before 10:00am
and after 3:00pm and stay out of the sun. Those
of you in bushfire prone areas should have your
fire plan in place and be prepared to take early
action should the necessity arise. If you have any
concerns please talk to your Regional Advisor or
contact the Canterbury office.
Many of you will be familiar with The Seekers, a
Melbourne group formed in the 60’s who travelled
to London as entertainers on an ocean liner and
became internationally famous. Georgy Girl –
The Seekers Musical is currently playing in
Melbourne and tells the story of their rise to fame
and goes on to focus on the experiences of lead
singer Judith Durham after she left the group.
Judith Durham married Ron Edgeworth, her
musical director, in 1969. In January 1993 Ron
was diagnosed with MND. He died in December
1994.
Over the years Judith has maintained a strong
connection with the MND Associations, is a patron
of MND Australia and has been awarded the
Medal of the Order Australia (OAM), the
Australian Centenary Medal and with the other
members of The Seekers, advanced as an Officer
of the Order of Australia (AO).
Due to Judith’s strong connection with MND the
producers of Georgy Girl very generously
provided several opportunities for us to engage
with the production during the Melbourne season.
One of these options was to provide volunteers to
‘can shake’ at the end of three performances.
Those volunteering to assist with the ‘can shake’
were also able to attend the performance. I was
one of the volunteers at the first ‘can shake’ and
what a treat it was. The show, particularly for
people ‘of an age’ who lived in the 60’s and knew
some of The Seekers’ story, was a walk down
memory lane. It is of course full of The Seekers’
great music interspersed with other music of the
era, engaging humour, fabulous singing – in fact it
is a most entertaining musical. Ron’s diagnosis
From Support Services
MNDNews | January – February 2016
Page 5
Support services for
carers of people with MND
Carers Victoria - (03) 9396 9500
www.carersvictoria.org.au
MND Carers Australia - go to Facebook
and search for: “MND Carers Australia”
CareSearch - www.caresearch.com.au
MND Victoria - (03) 9830 2122
www.mnd.asn.au
and death was dealt with sensitively in a very
moving scene. Just prior to the show finishing a
cast member spoke about MND and advised that
we were in the foyer ready to collect money from
those audience members wishing to make a
donation to assist with our work. The generosity
of people as they left the theatre was
overwhelming and humbling.
As always we welcome and thank you for your
feedback.
Bye for now
Julie McConnell, Manager Support Services
Four Deaths
By Colleen Clarke
It’s Christmas Eve eve. Two sleeps before Santa
comes. My nine year old daughter is pretty
excited. She’s not 100% sure Santa is ‘real’. She
was 5 ½ years old when Steve was diagnosed
with MND, and 8 ½ years old when he passed
away in May 2015.
My grief so far has taken many forms, the two
standouts being sleeping, and eating. My taste
buds are loving this, but my body is not!!!!
As I grieve, it’s my nature to reflect and ponder,
and think, and think … but also to not think.
Sometimes it hurts too much. I find as I process
things and let them go, parts of my brain and
heart open up to let more things slip in. I had a bit
of an epiphany some months after Steve died.
About four major deaths that occur when your
husband gets MND.
As the wife and carer of my beautiful Steve, there
are four major losses I’ve experienced, besides
the gazillion other losses that occur along the
way.
The first loss is the future we took for granted.
Once that diagnosis was official, our future, our
golden road of life; Steve, myself, our daughter;
well that was gone. Death No. 1. Walking out of
our neurologist’s office that Monday evening, it
was like being in the Twilight Zone; everything
looked the same as when we walked into the
neuro’s office … but nothing was the same
anymore, nor would it be, ever.
The second loss was of ourselves. MND had
already stolen Steve’s speech, his legs and arms
were soon to follow. By that time Steve had
started to withdraw, he went to a dark place, and
never truly returned, not as his pre-MND self
anyhow. He was amazing during his illness, and I
have many wonderful memories of almost every
day I shared with him, but the illness and its ripple
effects changed Steve, changed me. Death No. 2
The third loss; Steve’s passing away. What can
you say. Death No. 3.
The fourth loss … myself, post-death. Losing
Steve, bit by bit as MND claimed his body and
Your stories
Judith Durham—Patron of MND Australia
MNDNews | January – February 2016
Page 6
Group Programs
Living Well
Living Well is a group program that is designed for
people with MND and their carers. Participants
have the opportunity to share knowledge and
discuss topics relevant to living with MND.
The format of the program varies to suit the needs
of participants and may include readings, group
discussion, video presentations and guest
speakers.
“I have enjoyed the sessions and whilst it was
sometimes a bit of an effort to get here, I always
left feeling better informed and better equipped to
handle the week ahead. Sharing our experiences
always made me feel a little less alone with my
problems”. - Living Well Participant
Living Through
Living Through provides an opportunity for newly
bereaved carers and family members to meet with
others who share similar experiences in an
informal and friendly environment.
In late November 2015, 10 people attended Living
Through at the Canterbury office. They heard an
engaging and informative presentation about grief
experiences from guest speaker Marge Johnson
from The Compassionate Friends. Following the
presentation vibrant conversation ensued.
Participant comments from the session included:
“I thought the depth of the conversation and
sharing was engaging and very meaningful”
"Really, really good"
“I've surprised myself by how much I got out of
the bereavement session. I thought the
soul, well, it killed me too, the pre-MND me.
Intrinsically, I’m here, but my flame almost
completely extinguished, almost to the point of
non-being when Steve died, and I need to rebuild
and re-emerge. Death No. 4.
In the seven months since Steve passed away
I’ve lived through the disabling grief that allows
me to barely function. Getting my daughter fed
and to school are achievements enough. Rest
and sleep for me have been a large part of my
recovery. I now have more energy, and find there
are times when I can laugh, and enjoy, despite
the grief. This is meshed between the deep
feelings of sadness and loss.
After Steve had passed away, I had feelings I
found hard to identify. Eventually three words
emerged that best described them: bereft,
displaced and lost.
My daughter and I have to learn to live without
Steve. Move forward. I keep moving forward,
even if it’s just from the couch to the bed! But the
essence of my feelings is that of being picked up,
carried by a huge crane, and dumped back into a
world that looks almost exactly the same as my
previous world, but feels completely different.
Similar to when Steve was first diagnosed; but a
very, very different feeling as well. Even when
Steve was sick, he was there, his presence and
spirit was very strong, and I had tremendous
purpose. My future for the next couple of years
was caring for Steve, and for Sarah.
Now it’s all about building our lives without Steve
in them. Building around the grief, learning to live
and thrive once again while carrying the grief (that
will never go away) somewhere in our beings.
Already it’s getting easier, although I know for
years to come, there will be good times, and
times when the grief hits you like a huge wave
and knocks you down and times when the wave
will be smaller, but will make you stop and tread
water.
I wasn’t sure how to finish this piece off but, as I
was doing dishes today, I realised it would be by
recognising how far I’ve come in the last seven
months. In those first, terrible months, I couldn’t
even garner the energy to do dishes. A couple of
people have been privy to seeing my kitchen at its
very worst. Combined with the fact there were
loads of bits and bobs to clear away after almost
three years of MND equipment and aids
dominating our home, there were times I wouldn’t
let people inside the house, it was that bad. (Yes,
we had short conversations on the verandah, or
met for coffee elsewhere!!!)
Now, the house is getting there. Tidiness and
filling out forms are my Achilles heels, so while I
have a long way to go, I know I will get there with
ensuring our house is neat and tidy, and feels like
a home. Just like my journey with grief, it’s a
constant work in progress and will never be over.
MNDNews | January – February 2016
Page 7
Meeting others
Are you interested in having contact
with others living with MND?
MND Victoria can assist people with MND, carers,
family members and friends to get in contact with
others in similar circumstances.
This can be done through:
MND Victoria group programs
Ongoing support groups
Facilitating contact either in person, by phone
or by email
Referring to external online support groups.
If you would like to be in contact with others, but
are uncertain of how to go about it, then contact
us and we can talk you through your options.
Please email: [email protected] or phone:
03 9830 2122
MND Carers Australia
An online support group for Australian MND
carers to discuss issues they face. MND Carers
Facebook support groups
Australia is independent from MND Victoria, but
has asked us to promote their group. To access the
group you will need a Facebook account.
A message from MND Carers Australia’s
administrators: MND Carers Australia’s focus is to
support the primary carer of someone with MND.
The primary carer faces many challenges. They
often feel isolated, feeling like no one understands
what they are going through. Only one family
member is allowed in the group as the primary
carer needs a safe place to discuss any and all
issues they may face. This is a private group where
you can feel supported, ask questions and vent
about the difficulties you face as the primary carer
of someone with MND. We hope you will be
proactive in the group and gain knowledge from
others, but we understand everyone will be at a
different point on the MND road. If you would like to
join, go to Facebook and search for: “MND Carers
Australia”
MND Angels Australia
An online support group for people in Australia
whose partners have died from MND. MND Angels
is independent from MND Victoria, but has asked
us to promote their group. MND Angels offers
participants an opportunity to share experiences
and support one another. To access the group you
will need a Facebook account. If you would like to
join, go to Facebook and search for: “MND Angels
Australia”.
CALS Angels—Former ALS Caregivers
CALS Angels is a worldwide Facebook group for all
caregivers be they partners, children, family
members or friends who have had someone they
love die from MND (also known as ALS in some
countries). CALS Angels is independent from MND
Victoria.
A message from the administrators: The CALS
Angels group connects ALS caregivers who have
lost their PALS (people with ALS). Our collective
goal is to provide a caring, understanding and
supportive environment for grieving and growing as
we emerge from our primary caregiver roles to
rediscover and reengage with life after the journey
of ALS ends. We welcome all ALS caregivers
(CALS) who have lost their loved ones to join us.
Please visit: https://www.facebook.com/groups/
CALS.Angels/ to find out more.
presentation by the Compassionate Friends lady
was brilliant.”
MND Victoria would like to thank Marge and The
Compassionate Friends for their continued
support of this program.
Living On
Living On is a four week program designed for
former carers. It provides the opportunity for
people who have been bereaved for 12 months or
more to meet in a facilitated group to explore
positive ways of moving forward whilst finding
ways of retaining treasured memories.
How do you get involved with the
groups?
MND Victoria will contact potential participants for
the Living On, Living Through and Living Well
programs shortly before the groups are run.
However, you are more than welcome to contact
MND Victoria to register your interest, please
contact MND Victoria. Phone: (03) 9830 2122 or
1800 806 632 or Email: [email protected]
MNDNews | January – February 2016
Page 8
Research
By Graeme Bertuch, a former
General Practitioner and MND
Victoria Volunteer. Graeme
contributes to MND News by
providing a summary of
research for each edition.
The force
awakens!
We are now into 2016 and the investigations into
the cause of MND have intensified over the last
couple of years. Research on this insidious
disease is being done worldwide. Much recent
research was presented at the 26th International
Symposium on ALS/MND held in Orlando from
December 11 to 13 2015. [abstracts available on
http://www.mndassociation.org/research/
international-symposium/abstracts-online/]
There were 91 lectures and over 300 posters
presented at this symposium showing the extent
of investigations into possible causes, genetic
damage/involvement, management of clinical
problems such as sialorrhoea [excess saliva],
dyspnoea, cramps and many others which will be
addressed in this or future newsletters.
There are many intriguing features of MND which
remain unexplained and despite all of the brilliant
and methodical research being done we seem to
be no closer to a “theory of everything” which
allows the integration of all the investigations and
results into a unified cause.
MND is essentially an adult onset disorder even in
those born with genetic mutations which increase
the risk of developing MND. In general there is
sudden onset and rapid progression [there can be
variations in progress which will be discussed
later] and it generally starts in one region and
spreads. There is also developing thought that
ALS is developed through a multistep process,
potentially revealing different subgroups
depending on age of onset, site, and duration of
survival. For example, an older subgroup where
survival is longer may be a different subgroup as
may flail arm, flail leg and bulbar onsets. [N
Pearce et al Is ALS a multistep process? London
School of Hygiene and tropical Medicine, London,
UK]
More is understood about the ALS/MND clinical
profile than ever before but there is still not a
formal unified logical classification [A Al-Chalabi,
Kings College London]. There are inconsistencies
in the way specialists describe the different clinical
patterns and inconsistencies arising from the
nervous system, level of involvement particularly
when looking at bulbar palsies and other groups
including anatomical levels (UMN –upper motor
neuron, LMN-lower motor neuron). In some
countries ALS (amyotrophic lateral sclerosis) is
used as an umbrella term to describe the clinical
pattern of the motor syndrome diagnosis.
Plateaus and reversals?
Despite MND generally being unremitting in its
progress, there is some new preliminary research
that suggests that there can be plateaus and
reversals and there can also be variations as
noted in an article from Duke University (USA)
[http://www.neurology.org/site/includefiles/
homepage/bedlack.pdf] The article notes that
plateaus and reversals can be common but large
sustained reversals are rare. Stable disease was
reported in 25% over 6 months, 16% over 12
months, and 7% over 18 months. They also
reported that 16% of patients reported a slight
improvement over 6 months but less than 1% had
a moderate improvement over 12 months. ALS
progression was measured using a scoring
system and probably did not reflect the state of
the motor nerves. More sensitive biomarkers
(when found) may give a better idea of early
diagnosis and progression. There was no mention
of the age of the patients, site of onset, duration of
disease etc which may point to different
subgroups and therefore variable survival as
noted above.
For more information the MND Association of
England, Wales and Northern Ireland has written
an excellent article on this topic which
can be accessed online by visiting: [https://
mndresearch.wordpress.com/tag/als-reversals/]
Genie out of the bottle?
When looking at the genetics of MND the picture
becomes more intriguing. Multiple genetic
disruptions have been identified, now over 20,
with 8 cropping up more frequently. Several of
these genes show pleiotropy (one gene influences
MNDNews | January – February 2016
Page 9
two or more cellular systems). Genetics and
possible environmental influences on genes are a
major area of investigation. (Genetics is a learning
process for me as I commenced Medicine just
after Watson and Crick had defined the double
helix structure of DNA!) The question should be
asked whether MND is more than one disease. If
we remove the “outliers” clinically considered with
MND such as Primary Lateral Sclerosis (PLS)
where the upper motor neurons are affected,
Kennedy’s Disease which is X-linked and Spinal
Muscular Atrophy (SMA) which has 2 genes
(SMA1&2) malfunctioning, then MND is
considered to be 90% sporadic onset and 10%
inherited. The genetic involvement for the familial
disease is starting to unravel but the genetic
causes of sporadic MND are still largely unknown.
In MND there are different phenotypes (physical
presentations) such as Flail Arm and Flail Leg
syndromes and Bulbar presentation as well as
global MND. And then there is a crossover with
Fronto-Temporal Dementia but that’s another
story!
Environmental mayhem?
Environmental factors may play a part in the
causation of MND and many chemicals and
traumatic events have been implicated. Physical
activity, head injury, diet, military service,
agricultural chemicals, heavy metals,
formaldehyde (but only for males!), and blue-
green algae have all been written about. The
algae story is interesting because of the
magnitude of increase in the residents of Guam
that were/are effected. This involved ingesting a
protein (BMAA) from cycads/fruit bats which is
then incorporated into RNA and causes
misinterpretation of genetic information. We could
extrapolate to Australia and ask if there is an
excess cohort of country dwellers with MND who
have relied on tank water to drink and dam water
for other uses around the farm?
Potions and cures!
Specific treatment of MND is currently limited, with
Riluzole being the only drug authorised for use in
Australia. The use of this drug can lead to a
slightly better outcome but may be accompanied
by side effects. Other medications are generally
given to reduce saliva, reduce cramps etc. There
How you can help MND research
are many other treatments in the pipeline
including gene therapy designed to alter how
faulty genes work, antiretroviral medications (are
there sequestered viruses in our genes?), novel
proteins such as C3aR to increase energy
balance of motor neurons, anti-inflammatory
drugs such as Ibudilast, drugs to overcome
copper deficiency (brain areas of MND patients
have been found to be very deficient in copper),
antioxidant therapy such as Edaravone (which
seemed to help only a small subgroup of people
with MND), and high dose Vitamin B12 injections
which were also found to be helpful in a small
subgroup of patients if given in the initial 12
months of the disease. Stem Cell therapy is being
trialled in South Korea where patients own bone
marrow stem cells were injected into the spinal
cord. The researchers concluded that there were
no major side effects, and that patients given stem
cell therapy declined at a slower rate than those
given placebo. They noted that larger studies
were needed before stem cells could be
considered a treatment for MND.
Aussie research
The recent MNDRIA newsletter, which
accompanies the MND Newsletter this month,
presents brief summaries of grant recipients and
their projects. MNDRIA has a commitment to
encourage researchers at all stages of their
research careers investigating MND. Researchers
awarded grants are working across environmental
risk factors, genetics, detection and early
diagnosis, and novel treatments. Treatments can
be new medications or managing the clinical
problems of MND such as breathing difficulties,
fatigue, and even the consequential changes in
gut bacteria due to altered dietary intake.
Including previous recipients who are still working
on projects there are 42 researchers mentioned
who have gained grants for research into MND.
Donating Tissue to MND Research
The MND Research Tissue Bank is seeking
people with MND who are interested in registering
for brain and spinal cord donation after death.
Please visit www.mndtissuebank.asn.au or
contact Ms Fairlie Hinton on: 03 8344 1900
MNDNews | January – February 2016
Page 10
Volunteer News
“Let our New Year's resolution be this: we will be
there for one another as fellow members of
humanity, in the finest sense of the word.” –
Goran Persson, Swedish Politician
The New Year is a time to reflect on the changes
we want or need to make. Some people want to
give up vices while others want to lose weight or
get fit. Another popular resolution is to help
others. If your resolution is to help others during
2016, check out our volunteer opportunities on
the following page.
Volunteer Christmas Celebration
The Volunteer Christmas Celebration was held in
early December and was attended by around
thirty five of our current volunteers. It was the
perfect opportunity for the Association to say
thank you, for people to catch up with old friends
or meet new ones for the first time. Judging by
the talking and laughter in the room, it was a very
successful evening.
Premier’s Volunteer Champions Awards
Congratulations to volunteer Ross McDowall
(Home Visitor) who received a 2015 Premier’s
Volunteer Champions Award.
Ross, who also volunteers for Eastern Palliative
Care and South East Volunteers, was one of fifty
one outstanding Victorian volunteers invited to
Government House on 29 November 2015 to be
formally recognised for their amazing
contributions to the community.
South East Volunteers nominated Ross for his
work as a driver in their Transport Program.
Ross is pictured with Jenny Mikakos, Minister for
Families & Children (L) and Gabrielle Williams,
Parliamentary Secretary for Carers and
Volunteers.
Life Stories Program
Being involved in our Life Stories Program
(formerly Biography Program) is a wonderful way
to renew, relive and relate your memories for your
family and future generations to enjoy.
Working with a trained volunteer in your place of
residence, your stories are captured using a
digital recorder over a maximum of six visits. Each
visit lasts no more than one hour. Six to eight
photos plus a cover photo may be included. Once
the recording sessions are finished, the volunteer
will prepare your story for printing and binding.
You will receive two bound copies along with an
electronic copy should you wish to print more.
If you would like to be involved in the Life Stories
Program – either as a volunteer or recipient –
please contact Leanne on (03) 9830 2122.
“Every one of us is a wonder. Every one of us has
a story.” - Kristin Hunter American writer.
Leanne Conway
Coordinator Volunteer Programs
MNDNews | January – February 2016
Page 11
Awareness & Fundraising
“I hope that in this year to come, you make
mistakes.
Because if you are making mistakes, then you are
making new things, trying new things, learning,
living, pushing yourself, changing yourself,
changing your world. You're doing things you've
never done before, and more importantly, you're
Doing Something ... Whatever it is you're scared
of doing, Do it. Make your mistakes, next year and
forever.”
― Neil Gaiman, author, 1960-
I’m happy to say that I had a lovely two week
break but am now happily back at MND Victoria
looking for ways to support all our wonderful
fundraisers. You do an amazing job of raising the
profile of MND and the Association as well as
helping to raise $2.7 million last year. As I’ve
shared many times the Association receives only
about 25% Government funding so every dollar
raised through various fundraising activities
impacts the lives of people in Victoria living with
MND.
As we start the new year it’s also a good
opportunity to thank the various Trusts and
Foundations who continue to support us. Their
grants are used to purchase new equipment for
the Equipment Service as well as enhance the
support programs that are delivered throughout
the year and throughout Victoria.
So, as Neil Gaiman said, let’s not put off trying
new fundraising activities just because we’re
afraid to make mistakes. Mistakes may happen
when we stretch ourselves, but mistakes help us
grow and eventually enable us to attain new
heights.
Thank you for your fantastic support – I look
forward to supporting your efforts in the coming
year.
Kathy Nightingale
Manager Fundraising
Past Events Round-up
Wangaratta Family Fun Day
Although it was only a few days before Christmas
Jackie Neate organised a Family Fun Day at
Wangaratta as a result of a family friend being
diagnosed with MND. It was a great day and at
the time of writing Jackie has raised almost $800
through donations and merchandise sales.
Congratulations Jackie.
Hume Central Secondary College
On 7 December I was privileged to attend a final
assembly and receive a cheque from the students
as a result of their fundraising activities.
Broadford Community Market
On Sunday, 6 December Tania Giuliano raised
almost $1,000 at the Broadford Community
market. Congratulations to Tania and everyone
involved.
Visitor
Time required: 2 – 3 hours per week/fortnight
Preferable day: Dependent on client
Duties include: Visiting client in place of
residence (Thornbury area) to assist with
recreational gardening (no heavy work)
Essential skills: Good communication, enjoy
working with people
Walk to D-Feet MND Coordinator
(Melbourne)
Time required: 1 day per week although this will
vary during the year with bulk of time required
September through to end December
Preferable day: Tuesday but is negotiable
Duties include: Plan, co-ordinate and oversee
annual walk (working with Manager Fundraising
and Coordinator Volunteers)
Essential skills: Good communication, enjoy
working with people, excellent organisational
skills, able to work autonomously and as part of
team.
This position is a long term commitment.
MNDNews | January – February 2016
Page 12
Sunbury Rotary Club
One of our Regional Advisors attended Sunbury
Rotary Club’s final dinner for 2015 and gave a
brief presentation on MND and the work of the
Association. Ruth was presented with a cheque
for $3,661.90.
All funds raised will be a big help to the
Association and may possibly be used to
purchase much needed equipment for the
Equipment Service.
Melbourne Walk to D’Feet
MND—Carlton
The results are in!
Most money raised:
- Walk for Toni Patch
raised a grand total of $20,550. Tony Gray started
Walk for Toni Patch for his wife who died from
MND in 2015. A special thank-you to the Pratt
Foundation for supporting Tony’s efforts.
- Shena’s Army also did a great job raising
$10,230.
Team with most members:
- Shena’s Army
This was very close with three teams having over
70 members!
Best dressed team:
This went to the defending champions, although
this year they changed their name.
- Team Bruce McCann
Congratulations also go to Copeland Crew for
their stylish hats and to members of team Walk
for John who wore their best tutus on the day.
We again thank Miele for providing a state of the
art vacuum cleaner and Lorraine Lea Linen for
their beautiful basket of linen as our major prizes
for the Walk Raffle. The ticket sales raised nearly
$2,000 – an outstanding result.
Bendigo Walk to D'Feet MND
By Eric Kelly, Regional Advisor
Sunday, 22 November 2015 was a glorious day in
Bendigo. The fifth annual walk to D’feet MND
event was held again at the beautiful Lake
Weroona.
About 200 people walked to raise both funds and
awareness of MND. Almost $11,000 was raised.
Most people walked two laps of the lake in the
beautiful park setting.
Thanks to Kristen Moss and her group of helpers
to ensure the day flowed smoothly. Also thanks to
the Rotary club for cooking the BBQ and The
Zone for the jumping castle which helped to keep
the kids entertained.
We look forward to this event growing in the future
and please feel free to contact MND Vic if you are
able to help at the event. Please add the Bendigo
Walk to your 2016 calendar—Sunday, 20
November 2016.
Warragul Walk to D’Feet
MND
The third Warragul Walk to D’feet was even more
emotional than the previous two as it took place
just over a week after the death of Barb Phillipi
and one day after John Parker died from MND.
Both these individuals were inspirational in the
way they lived with MND. It was Barb who pushed
for a Warragul Walk to D’feet MND and she
worked tirelessly to ensure its on-going success.
John also worked tirelessly to raise awareness of
MND.
Both families were due to lead off the third
Warragul Walk to D’feet MND and incredibly they
did despite their very difficult circumstances, as
they felt this would be what Barb and John would
have wanted.
It was a beautiful day and almost 500 people
completed the course and raised approximately
$14,000. MND Victoria would like to thank all the
volunteers involved in making this day a great
success – from selling merchandise, managing
registration, donating raffle prizes, providing
entertainment, promoting the event and cooking
up a storm. Without your contribution the event
couldn’t take place.
MNDNews | January – February 2016
Page 13
We would like to say a huge thank you to the
producers of Georgy Girl for their support of MND
Victoria. They invited us to insert a half-page ad
in the souvenir program, enabled us to “can
shake” at the end of three performances and
provided us with some complimentary tickets to
the show. These tickets were allocated randomly
to 10 clients and the feedback we’ve received so
far has been very positive:
We really enjoyed Georgy Girl, thank you for
giving us the opportunity to see. Of course I cried
in the appropriate places. Cheers Carole
My mum went with her today and they loved it :)
Said it was wonderful.
Thank you again for the tickets, it’s great to know
she can still go out and enjoy days like these!
Jessica (granddaughter)
FUNDRAISING
OPPORTUNITIES IN 2016
There are many different ways to raise
awareness and funds for MND such as holding a
Golf Day / Trivia Night / Ball / Cricket or Football
Tournament to name just a few. There are also
two really easy ways to support MND Victoria.
The first is Drink Tea for MND – this can be as
simple as inviting family and friends for an
afternoon tea at your home or if you’ve got the
time you may want to organise something bigger
at a local community hall.
If you’d like to find out more information about
holding a Drink Tea for MND event please
contact me on [email protected]
Sausage Sizzle—Coordinators needed
Most of us have gone to our local Bunnings on a
Saturday and bought a sausage because it’s hard
to resist that lovely smell. Bunnings, Masters and
Officeworks all offer this opportunity to community
groups to fundraise. For several years a group of
supporters have managed a BBQ at Bunnings,
Box Hill raising thousands of dollars for the
Association.
We have recently been advised by Masters and
Officeworks that they would be happy to support
anyone who wanted to hold a BBQ for MND
Victoria. They would provide the BBQ, table,
marquee etc and MND Victoria will cover the
costs of food and soft drinks.
So, if you’ve always wanted to do something to
raise awareness and funds but don’t have the
time to organise a big event, why not get a few
mates together and FIRE UP the barbie at your
local Officeworks or Masters.
For more information about which stores have
availability for you to FIRE UP the barbie please
contact [email protected]
Annual June Ball
Below is an extract from the organisers of the
annual June Ball:
From the humble beginnings of our MND Ball 9
years ago, we have been witness to massive
changes in the MND landscape.
Nine years ago was the first time most of us heard
about MND when our great mate Mick Rodger
was diagnosed. Fast forward a few years and
there would be very few people in the general
population who have not heard about MND.
Awareness, $$$ and break-through research have
really catapulted MND into the community psych.
Not only has MND awareness and research
grown, so too has our MND Community. To
accommodate our expanding community, our
2016 Ball will be held across the road at The
Pullman on Saturday 18th June 2016. Please
pop this date into your diaries!! Our numbers
are still somewhat limited so please lock in your
tables as soon as possible.
Your continued efforts are helping Australia's
MND researchers remain as world leaders.
Significant breakthroughs are occurring all the
time - so much so that there is the possibility of
clinical trials in Australia very soon. There remains
a lot to do but when you see such progress it so
makes every effort very worthwhile.
Challenge Events
If you think 2016 is your year to get fit and take
part in a challenge event why not make it more
motivational and raise funds for MND Victoria.
You can see a full list of events available at:
http://runcalendar.com.au/melbourne
MNDNews | January – February 2016
Page 14
Any of these events can be used to raise funds for
MND Victoria – just register for the event and then
start your MyCause fundraising page at:
https://www.mycause.com.au/events/
mndfundraisingvic
Everyone who enters a Challenge Event and
raises funds for MND Victoria will be given a free
“I’m Running to D’feet MND” Singlet or T-shirt.
Just contact [email protected]
Last year over $50,000 was raised through Run
Melbourne thanks to our great supporters. We
hope to pass that this year. If you’re planning to
take part again this year, you can register for the
event at: https://app.realbuzzregistrations.com/
events/sole-motive/run-melbourne-2016/login/
Once you’ve registered you can start your
own MyCause fundraising page online at
www.mycause.com.au/events/1545 and don’t
forget as an MND Victoria supporter you’re
entitled to an MND singlet.
Benalla and Geelong Walk to
D’Feet MND
The new year has started and we hope that
you’ve already marked in your diary to attend one
of the upcoming Walk to D’feet MND events being
held in Benalla and Geelong.
Rock Off MND 2016—Join us at 5pm on 5 March 2016!
Deakin University Waterfront Campus, Geelong
Rock Off MND is a live music event that aims to raise much-needed funds for Motor Neurone
Disease (MND) research and to increase community awareness.
Peter and Jenny Simko along with their family and friends came up with the idea of Rock Off MND after
Jenny was diagnosed with the disease in August 2014. The initial Rock Off MND took place last March
and it was an outstanding success, raising over $60,000, which has funded the Jenny Simko Research
Grant awarded to A/Prof Tracey Dickson, The University of Tasmania, for her work on A systematic
human pathology analysis of interneurons in MND.
Sadly Jenny died last December but Peter and the
family are committed to honouring her memory while
raising awareness and funds for MND.
This year’s event is predicted to be bigger and better
than before – if that’s even possible.
Check out their Facebook page for more information:
https://www.facebook.com/rockoffmnd/
These two events are always a lot of fun for
everyone involved and attract a large number of
people who want to raise awareness and funds for
MND. So, make sure you register, start your
MyCause page and invite all your family and
friends to come along and support your efforts.
Please go to our MyCause page: https://
www.mycause.com.au/events/walktodfeetmnd
to register for either event.
This lift is designed for lifting individuals from their
wheelchair into a vehicle and out again with
minimal effort. The lift is available at no cost,
but the interested party will need to get it
installed.
Features: Aluminium frame, fits most cars, people
carriers and 4x4s, lifts up to 111kg, only 8kg,
emergency switches, optional manual operation,
can be operated by a carer or the individual. Easy
to use remote. Comes with sling and bag with
carry straps. View online at: http://
www.mobilityengineering.com.au/lift-milford.htm
Contact Arthur: 0402 819 809
MND Victoria recommends you consult an
appropriate Allied Health Professional before
contacting Arthur.
Milford Personal Lift available
MNDNews | January – February 2016
Page 15
Helpful hints
New Victorian Patient Transport
Assistance Scheme (VPTAS)
The Department of Health and Human Services
has released a set of revised documents and
forms for the Victorian Patient Transport
Assistance Scheme (VPTAS).
Please visit: https://www.go.vic.gov.au/1epXMN
for further information.
Donations were received
Bequest Donation Estate of Alice Elizabeth Allison
Estate of Margery Helen Welsh.
Donations were
made in memory of
Kevin Lyons
Barb Phlillipi
Bruce McCann
Brett Rasmussen
Derrick Grant
Filanthi Lizardos
Freda Robertson
Graham Wilkie
Joseph O’Onofrio
John Lines
Jessie McCallum
Bert Jones
John Parker
John Courtney
Ken McKenzie
Lyn Parker
Lawrence Stats
Max Brooker
Michelle Copeland
Mark Winter
Noel Robinson
Nazzareno Salerni
Steve Jozwik
Simon Robin
Peter Pizzey
Ed Ongley
John Kloproggue
Vic Baker
Jim Hendriks
Carolie Stringer
Florence Spittle
George Hoffman
Elizabeth Dorothy
Kimberley Sparks
Frans Vanderbom
Johanne Yianni
John Butler
Elaine Fayers
Geoff Blake
John Crowley
Marjorie Toulmin
Grace Murray
Barrie Gregory
Phillip Molyneux
Douglas Evans
Tom Bull
Gordon Baker
Bill Kennedy
Ildy Hunton
Vicki Mae Reynolds
Jenny Simko
Robin McCullough
John Smith
Nora Sambell
Patricia Allen
Simon Duell
Elaine O’Neill
Raffaele Ciano
Harry Solterbeck
Michael Larcombe
Robert Hodges
Andrea Larcombe
Edmund Kasprzyk
Margie Parsons
John McGown
Trust & Foundation
Donation The William Angliss Charitable Fund
Collier Charitable Fund
The Dawn Wade Foundation
Pierce Armstrong Trust
Pratt Foundation
Support Group
Donation
MND Tasmania
Corporate
Donations Edgewise Insurance Brokers
Sugar Station Preston
Ausfit Pty Ltd
Anytime Fitness Heidelberg
Reece Australia Pty Ltd
Splish ‘N’Splash
Entertainment Publications of Australia Pty Ltd
Woolworth Australia Pty Ltd
Group Donations
Port Phillip District
Bendigo Senior Secondary College
St Michael’s Cathlolic Primary School
Magistrate Court of Victoria
Lancefield Equestrian Group Inc
Eltham College
Highvale Retirement Village Social Club
Then Wandin Park Association Inc
Message Exchange
Melbourne Doll Show
Latrobe Ladies Probus Club Inc
Lions Club of Booroondara Central
Caulifield Grammar School
The Centre (Your Community College)
Canterbury Primary School
Parade College
Traralgon College
Douglas Uniting Church Guild
Carfties of Coldstream Creation
Parkwood Green Primary School
The Village Glen
Equipment General
Donation
Clyde Allison
Thelma Featherston
Discounted Cinema Tickets with Hoyts
for Carers
Hoyts Cinema in conjunction with Carers Australia
have signed a discount cinema offer (effective
until December 2016) for the benefit of all carer
members of the Carer Associations in Australia.
The Carers offer is an adult ticket for $1.00
(maximum of 1 ticket per day) with membership
card.
Please check with your local Hoyts for full terms
and conditions.
MNDNews | January – February 2016
Page 16
Newsletter Issue Copy to Editor by Newsletter Mail Out Date
March – April 2016 10 March 2016 5 April 2016
Contributions to the newsletter are invited
MND Victoria members are invited to contribute personal stories, anecdotes, letters, or ‘Handy Hints’ to the
newsletter. We cannot guarantee that all contributions will be published as this is dependent on space
available, but every effort will be made to do so. Please note the dates above by which contributions
should reach the Newsletter Editor, MND Victoria, PO Box 23, Canterbury Victoria 3126, or email:
MND Victoria Events Calendar 2016
Date Description Contact
Sunday, 28 February 2016 Act to D’feet MND—Benalla! Join us for entertainment, auction, BBQ lunch and fun for all!
www.act2dfeetmnd.com
Sunday, 28 February 2016 Traralgon Golf Club Fundraising for
MND Victoria.
Email: [email protected] for more information.
Monday, 29 February 2016
Spring Valley Golf Club Fundraising
for MND Victoria.
Email: [email protected] for more information.
Saturday, 5 March 2016 Rock Off MND Live Music Event,
Deakin University Waterfront Campus,
Geelong.
https://www.facebook.com/rockoffmnd/
Saturday, 19 March 2016 MND Information Session Email: [email protected]
19 & 20 March 2016 Wandin Park Equestrian Event Email: [email protected]
Sunday, 20 March 2016 Walk to D’feet MND—Geelong! A great family day out to raise funds to support people in Victoria living with MND.
Email: [email protected] for more information.
Saturday, 7 May 2016 Albury Football Fundraising Day Email: [email protected]
Saturday, 18 June 2016 MND Ball—SAVE THE DATE! Email: [email protected]
For further information and the latest events list, go to www.mnd.asn.au/whats-on/table-events
Please email details of events you would like listed on our events calendar to Kathy Nightingale:
[email protected] we can also provide you with our Event Flyer template to use for your event.
www.mnd.asn.au | www.facebook.com/MNDVic | www.twitter.com/MNDVic
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Social media—Please help us raise MND awareness
You can help raise awareness about MND by “Liking” us on Facebook, “Following” us on Twitter and sharing MND posts and news with your friends and family. You can also invite your friends to our events on Facebook.