your stories: four deaths€¦ · awarded for new mndria grants. the allocation of this funding is...

January – February 2016

Your

stories:

Four deaths

Research Update: 26th International Symposium

on ALS/MND in Orlando

MNDNews | January – February 2016

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


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.


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


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


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.


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]


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


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


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


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.


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.


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


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

https://www.mycause.com.au/events/walktodfeetmnd

https://www.mycause.com.au/events/walktodfeetmnd


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.


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:

[email protected]

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.


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.


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

Icon

s in

th

is e

ditio

n m

ad

e b

y F

ree

pik

.co

m

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.

your stories: four deaths€¦ · awarded for new mndria grants. the allocation of this funding is...

Documents