www.mndawa.asn.au

mnd mattersVOLUME 6, ISSUE 1. FEBRUARY - MARCH 2018

2018 Education and Support Program

pg 7- 11

Until there is a cure, there is care.

Talking about MND to children

pg 5-6

Caring for the Carerpg 10

MOTOR NEURONE DISEASE ASSOCIATION OF

WESTERN AUSTRALIACentre for Neurological Support

The Niche - Suite B/11 Aberdare RdNedlands WA 6009

Phone: (08) 6457 7355Fax: (08) 6457 7332

Email: admin@mndawa.asn.au

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MND MattersVolume 6 Issue 1

February - March 2018

16

INSIDE THIS ISSUEFrom the Executive Officer 2Shed Light on the Matter- International Alliance Meetings- Ross Whiteman, OAM

3 - 4

MND Advisors Corner 5 - 6 Education and Support Program 7 - 11Christmas Function 12MNDAWA Events 13Get Involved 14Community Fundraising 15 - 17Change 4 Change 18In Loving Memory 19 - 20Notices 21Calendar of Events 22

COMMITTEE OF MANAGEMENTChairperson: Karen SmartVice-Chairperson: Samar AounTreasurer: Helen KrausSecretary: Jan TaylorMember: Lay KhoMember: Chau HuynhMember: Scott EllwoodMember: Anthony Akkari

HONORARY POSITIONSHon. Solicitor: Mr Peter MurrayHon. Accountant: Mr Tony Silipo

PATRONSNarelda JacobsKeith Potger, AOKim Hughes

STAFFExecutive Officer: Andrew HirstFundraising & Events Manager: Cara IlsleyEducation & Support Coordinator: Lisa ShieldsMND Advisors: Joan Ellis, Sara Duque, Joanne Borrelli, Leanne BodleyMND Community Nurse: Lynne LomaxAccountant: Ling LeeAccounts Receivable & Administration Officer: Kim Rolls, Anne KingAdministration Assistant: Michelle Henderson

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1

Andrew HirstExecutive Officer

INSIDE THIS ISSUEFrom the Executive Officer 2Shed Light on the Matter- International Alliance Meetings- Ross Whiteman, OAM

3 - 4

MND Advisors Corner 5 - 6 Education and Support Program 7 - 11Christmas Function 12MNDAWA Events 13Get Involved 14Community Fundraising 15 - 17Change 4 Change 18In Loving Memory 19 - 20Notices 21Calendar of Events 22

Until there is a cUre,

there is care.

COMMITTEE OF MANAGEMENTChairperson: Karen SmartVice-Chairperson: Samar AounTreasurer: Helen KrausSecretary: Jan TaylorMember: Lay KhoMember: Chau HuynhMember: Scott EllwoodMember: Anthony Akkari

HONORARY POSITIONSHon. Solicitor: Mr Peter MurrayHon. Accountant: Mr Tony Silipo

PATRONSNarelda JacobsKeith Potger, AOKim Hughes

STAFFExecutive Officer: Andrew HirstFundraising & Events Manager: Cara IlsleyEducation & Support Coordinator: Lisa ShieldsMND Advisors: Joan Ellis, Sara Duque, Joanne Borrelli, Leanne BodleyMND Community Nurse: Lynne LomaxAccountant: Ling LeeAccounts Receivable & Administration Officer: Kim Rolls, Anne KingAdministration Assistant: Michelle Henderson

Welcome

Hello everyone,

Let me introduce myself. I am Andrew Hirst and as I pen this note I have just completed my first week as the Executive Officer of MNDAWA. A big thank you to the Committee in selecting me and to the staff at the MNDAWA office for being so welcoming.

A brief overview of myself; I originally trained as Registered Nurse in the UK and emigrated to Australia in 1986. I have worked in and around healthcare my entire career. Most recently I have been working for St John Ambulance WA based out of Kalgoorlie before moving to St John’s Perth head office in Belmont just over 2 years ago.

I look forward to meeting as many of you as possible over the coming months so look out for the bald man with the funny accent at many of our community events and if you are near the office drop in to say hello and have a cuppa.

Kind regards,

Andrew Hirst

Some highlights of theJanuary - February 2018 issue:

This is a jam packed edition of MND Matters with all the information you need on our new Education and Support Groups Program and Events for 2018. Lisa Shields, our Education and Support Coordinator surveyed our clients and their carers late last year to see how we can best meet the needs of our families and ensure we tailor the events and support groups to match these needs. Thank you to everyone who participated in the survey - your voice helps us support you. As a result, this year will see the introduction of new social support groups to make it easier to attend and meet people in your local area. We are also introducing the “Out of your Mind” mindfulness training to provide carers with the tools to develop resilience while facing the demands of caring for someone living with a terminal illness. Lisa has put together a comprehensive overview of all the programs on pages 7 -11.

There are plenty of ‘Save the Dates’ to mark down in your diaries for 2018, with our first fundraising event of the year, MNDAWA Dive for Dollars, on Sunday 18th March and the Walk to d’Feet MND on Sunday 6th May. We are always overwhelmed by the generosity and goodwill we receive from the community and held a Christmas cocktail function to acknowledge all those who have supported the MND community in 2017. The evening was well enjoyed by all those who attended at the Mt Lawley Golf Club on Tuesday 12th December with photos on page 12.

We congratulate Mr Ross Whiteman, OAM in recognition of being awarded an Order of Australia Medal for his service to people living with Motor Neurone Disease. An outstanding accomplishment.

Enjoy the edition.

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Shed Light on the MatterThe International ALS/MND Meetings

Each year in December the MND Association of England, Wales, and Northern Ireland organise, in partnership with the International Alliance of ALS/MND Associations, the International ALS/MND meetings. This year the meetings were held in Boston, USA from 4 – 9 December in conjunction with host Alliance member ALS TDI and ALS Hope.

Experts from research and medical communities as well as ALS/MND associations and people living with ALS/MND come together each year to share new understandings about ALS/MND. The key to defeating MND lies in fostering strong understanding of the disease as rapidly as possible. This was the MND Association’s rationale behind the creation of the International Symposium on ALS/MND.

Over the 5 days the meetings included an International Alliance of ALS/MND Associations annual meeting, an Ask the Experts session, and an Allied Professionals Forum, concluding in the ALS/MND International Symposium. This year attracted a record breaking 1,640 delegates from around the world - 25 countries across six continents.

This year marked the 25th Anniversary of the establishment of the ALS/MND International Alliance and in recognition of this a celebratory

video was created welcoming members and delegates to the meeting. This can be viewed online here: https://www.youtube.com/watch?time_continue=11&v=cgGDD8Br7N8.

The following overview has been extracted from MND Australia, Overview of International ALS/MND Meetings written by Carol Birks, CEO - MND Australia. For more information on each of the individual meetings and to read the full report visit: https://www.mndaust.asn.au/News-and-media/Overview-of-International-ALS-MND-Meetings.aspx

The ALS/MND International Alliance’s founding mission is:

“Provide an international community for ALS/MND

associations from around the world all united in the worldwide fight

against ALS/MND”

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Shed Light on the MatterThe International ALS/MND Meetings

Mr Ross Whiteman, OAMOrder of Australia Medal

For service to people with

Motor Neurone Disease

It is with great honour we congratulate Mr Ross Whiteman, OAM for being awarded with an Order of Australia Medal on 26th January 2018.

Ross was awarded the medal in recognition for his service to people living with Motor Neurone Disease (MND). The Order of Australia is an order of chivalry established on 14 February 1975 by Elizabeth II, Queen of Australia, to recognise Australian citizens and other persons for achievement or meritorious service.

Ross led the Motor Neurone Disease Association of Western Australia as Chairperson for 14 years following the passing of his wife, Ann Winifred, from MND in 2002. During this time he guided the Association from strength to strength and initiated significant advancement in the services provided to

people living with MND in Western Australia.

Ross has been a leader in the community under many banners, including the former CEO of Ray White Western Australia. Ray White are platinum sponsors of the Association to this day and continue to raise much needed funds to support people living with MND.

A very worthy recognition of the selfless work, time and service Ross has given to people living MND.

From the Committee of Management, team and MND Community we congratulate Ross for this outstanding recognition. We are extremely proud of your accomplishment.

“A very worthy recognition of the selfless work, time and service Ross has given to people living with Motor Neurone Disease”

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The MND Advisors Corner is written by one of our four MND Advisors. MND Advisors, through the family support service, offer invaluable expert guidance and emotional support to those diagnosed with MND and their families. The column provides you with information on services, equipment, facilities, the MND clinics and other resources to keep you informed. Should you want further information on any of the following please do not hesitate to contact the office on 6457 7355 or email admin@mndawa.asn.au.Our Advisors photographed from left to right; Leanne Bodley, Joan Ellis, Sara Duque and Jo Borrelli.

from the mnd advisors

Talking about Motor Neurone Disease with Children

There is no easy way to inform your children that you have been diagnosed with Motor Neurone Disease. It is an extremely difficult conversation to have and one that needs consideration prior to broaching the subject. When and how to tell your children is a question we often get asked….and one we always struggle to answer, as there is no ‘right way’.

How you tell your children is a very personal decision and each family will have their own way of dealing with it. There are a few thoughts that will be shared throughout this article that will hopefully assist you with your conversation or provide some conversational tools with which to work with.

It has been said that if you can arrange for your doctor to share the information with your children it takes the pressure off you and allows you to be there to comfort and support your children. If, however, that is not possible it is best to tell them in a location where they don’t feel confronted; somewhere that allows you to have a ‘side by side’ conversation, walking on the beach or in a park.

Some parents find it useful to broach the subject by finding out firstly what their children already know about MND. For example you could say, ‘what do you understand about Mum’s legs getting tired?’ Then discuss any essential information they don’t already know. Ensure you check in on how they are feeling, give them a hug and reinforce how important it is to talk about feelings.

MNDAWA has some very useful information regarding this difficult issue and provides ideas that may help with information sharing and managing the situation on a day to day basis.

• Let your children know how they can help, that allows them to feel part of your life;

• It’s important to have an outside focus and not let MND dominate your life;

• Everyone will experience grief, let your children go through the process. Shutting it down will only prolong the grief and not allow them to ‘walk beside you’….

A couple of other great ideas when it comes to trying to read your children’s responses are:

• Make an ‘Emotion Thermometer’ and put it on the fridge. Put phrases on it like; ‘ask me what’s wrong’, ‘I need a hug,’ ‘please don’t ask me how I feel’ etc. A fridge magnet can be used to point to the ‘feelings of the day’. This is a non-confrontational way for kids to communicate their feelings, allowing you to address them appropriately.

• Another easy way for kids to get their feeling across is to have a chart on their bedroom door with sayings such as…. ‘I need a hug today’; ‘I need a bit of space today’; or ‘Great day! Let’s do something fun!’

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One psychologist recommended watching Australian Story as a nice family thing to do. It provides an opportunity for kids to see how other people cope in difficult situations and manage adverse circumstances. It can also provide an opportunity to discuss tough circumstances that other people are facing and address how you as a family are coping with your situation.

Trying to stay positive will always benefit yourself and your family. If you are having a hard time, reach out to your MND Advisor. They are always there to listen and support you regardless of the situation and are also able to provide you with other resources.

Someone once stated;

“MND doesn’t stop bad things happening - but it

doesn’t stop us doing good things!”

If you would like to read more, here are some useful links:

• ‘When Someone Special has Motor Neurone Disease’ - from the MND Association of Victoria, (About MND, Information for Kids). www.mnd.asn.au

• ‘All For Kids’ – Information about MND for young children, adolescents and parents – Canadian ALS Association www.als.ca/allforkids

• www.kidshealth.org/kid Lou Gehrig’s Disease (ALS) Nemours Foundation – from America

• Real Stories from people living with MND www.mndassociation.org/life_with_mnd/experiences_of_MND

Feelings of the Day Board...‘I need a hug’

‘Please don’t ask me how I feel’‘Ask me what is wrong’

‘I need a bit of space

today’

‘Great day! Lets do something fun!’

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Education and Support Group Programs 2018MNDAWA is committed to raising awareness and delivering information about MND to people living with MND, their families, allied health professionals and the wider community. MNDAWA has developed many different programs, workshops, information evenings, and presentations which are delivered on an ‘as needs’ and ‘requested’ basis.

We recognise that some of our sessions can be confronting and upsetting, so in 2018 we are partnering with Carers WA to ensure we are supporting our MND clients, carers, family and friends. Specialist counsellors will be in attendance and available long term to assist you throughout your journeys.

- LISA SHIELDS, Education and Support Coordinator

Supporting Your Journey

The Motor Neurone Disease Association of Western Australia Inc. (MNDAWA) organises a range of different support groups and events throughout the year. Some are monthly gatherings and others are bi-annual or annual events. MNDAWA’s support groups and events enable people living with MND and their families to feel connected, guided and supported through their journey with MND. The different groups and events are listed on the following pages. Please note that some of the monthly functions are planned on week-ends occasionally and dates are advertised well in advance. For more information please contact the office on 6457 7355 or email admin@mndawa.asn.au

How do we cater for different

needs?We try to offer flexibility to suit as many of our clients, carers, families and friends. We understand people have work and family commitments beyond dealing with MND.

That is why MNDAWA offer events on weekdays and weekends, as well as during the day and some evening sessions. Hopefully this range of options enables our MND families to participate, meet new people, benefit from the wonderful support of others on the same journey while learning more about the disease.

This year we will be establishing ‘social groups’ in a number of areas around the metropolitan area. It is hoped that once established, these groups will offer another avenue of support and connection right on your doorsteps.

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Education and Support Group Programs 2018Support Groups

Get TogethersGet Together’s are a wonderful opportunity for those living with MND and their loved ones to meet in a relaxed social environment. This is an opportunity to receive and share information and support with others. Due to recent survey results indicating a preference for additional Pamper Days, we will only be hosting two such functions in 2018.

January 21st (Sunday) at Kings Park from 11.30am

Please bring picnic rugs or chairs and enjoy our simple barbeque in the sunshine on the lawn area in front of Zamia Café.

December 11th at The Niche, from 11.00amWill be our Christmas Luncheon and Secret Santa

Social Support Groups - NEWIn response to the client/carer survey we will be coordinating with you all to establish smaller ‘support / social groups’ within your own area. This will save on travel and transport costs, support your local businesses and provide additional support networks for you, closer to home.

WATCH THIS SPACE FOR A GROUP NEAR YOUYou choose the time, the place and the activity.

Global Day LuncheonEvery year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND. June 21 is a solstice – a turning point – and each year the MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.MNDAWA hosts a luncheon for clients, carers, friends, family and past carers.

Support GroupsCarers Lunches

This Carers only support group provides an opportunity for carers (and family and friends helping to care for someone living with MND) to meet and share their experiences, stories and advice; whilst being supported by the Association. We have four lunches planned for the year:

2018 Dates:20th February:

The Niche (Passmore Room) 11.30am

17th April: Caffissimo @ WA Maritime Museum 11.30am

Including a tour of the museum

17th July: Sandalford Caversham Estate Restaurant 11.30am -

Including wine tasting

16th October:Leapfrogs / Mini Golf 11.30am

Championship Mini Golf Cup on offer

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Education and Support Group Programs 2018Support Groups

cont.Pamper Days

Pamper Days are held to allow people living with MND, their family and friends to feel extremely special and have some well-earned relaxation and pampering. We have an amazing group of volunteers to make you feel like you are floating on cloud nine……and you can catch up with others from our MND Family as well. Come along and enjoy Massage, Reiki, Manicures, Pedicures, Foot Spas, Facials, Makeovers, KIDZ PLAY ZONE and much more….

2018 Dates

March 17thThe Niche, Nedlands - 10.00am – 2.00pm

June 9thLocation TBC - 10.00am – 2.00pm

August 18thLocation TBC - 10.00am – 2.00pm

November 17th Location TBC - 10.00am – 2.00pm

17th March 2018Pre-book your treatments for the next Pamper Day

Would you like to jump the queue??? This year we are trialling a pre-booking system for the Pamper Days to alleviate a bottleneck at the Registration Table.

A maximum of 3x treatments, per person, can be Pre-Booked. You will then be provided with an Appointment Card upon arrival and your pre-booked treatments will already be written in for you.

Please complete this tear off section and return to the MNDAWA Office or contact Lisa to discuss further; 6457 7355 or Lisa.Shields@mndawa.asn.au

Please select a MAXIMUM of 3 treatments. Mark boxes with an X

□ Massage (Upper body) □ Reiki □ Reflexology (Mark & Regina) □ Foot Spa □ Massage (Feet, Lower leg) □ Manicures □ Facials □ Makeup □ Hair Braiding

Treatments yet to be confirmed – if there is enough interest, we will organise these.

□ Pedicures □ Hair Styling (Blow Dry) □ Hair Cuts (Trim only)

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Caring for thecarerYou Me and MND -

Specialised Carer EducationThe You, Me & MND, Carers Course, is designed to empower carers with the knowledge and confidence to care for your loved one living with MND, whilst ensuring you have a strong emotional foundation to assist you in coming to terms with the changes that are taking place in your life. The program is held three times per year with a condensed 2-day program, an evening program over six weeks and a five week daytime program.

The following topics are covered:• What is MND, who is MNDAWA and how

can we help?• Swallowing, nutrition and breathing

• Speech, communication, assistive technology

• Moving and transferring techniques for carers

• Coping with the changes that are taking place in your life

• Stress management / Compassion fatigue

• Advanced health directives and care planning

• And other topics as required…..

2018 DatesSeries 1

Tuesdays 6-8pm; 20th & 27th February, 6th, 20th & 27th March, 3rd April

Series 2Mondays 10.00am – 4.00pm; 11th & 18th June

Series 3Thursdays 10.00am – midday; 1st, 8th, 15th, 22nd &

29th November

Education and Support Group Programs 2018

Out of Your Mind -Mindfulness Training

The Program’s focus is to provide carers, family and friends with the tools to develop resilience while facing the demands of living with a terminal illness. Designed specifically to restore a sense of perspective and control for people under high pressure.

The program is made up of 3 Modules – Mind Health, Mind Efficiency and Mind Resilience. The program will run over a three-month period, inclusive of:

• pre and post workshop surveys, • 2 x full days of facilitated Mind

Training, • ongoing communications portals

throughout • establishment of an ongoing support

network.

There is no need to worry about your loved ones living with MND when you attend the training. We are hosting activities for them simultaneously, to allow you to commit to attending without worrying about their needs.

Session 1Friday 13th April - Midday-5pm

Saturday 14th April - Midday – 5pm

Session 2Friday 25th May Midday – 5pm

Saturday 26th May Midday – 5pm

NOTE: Sessions planned to allow flexibility – choose a Friday or Saturday

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Education Programs 2018 cont.

Information EveningWednesday 9th May, The Niche Conference Room, 6.00 – 8.00pm

MNDAWA holds a minimum of one newly diagnosed information session per annum which is generally held in the evening and is presented by a neurologist who specialises in Motor Neurone

Disease. The session provides information on MND and gives people living with MND and their families the opportunity to ask questions about the condition in a supportive environment.

Starting the ConversationPart 1 – Advanced Health Directives

Specialist guest speakers will guide you gently through the processes involved with developing Advance Health Directives, Advance Care Plans, Enduring Power of Attorney and Guardianship, Wills

and Capacity.

Carers WA, in partnership with MNDAWA, will have counsellors available during this session.It is never too early for everyone to start these conversations because once sorted we can all get on

with the important things and live life to the fullest!

Part 2 – Future Planning

Guest speakers will explain the Aged Care puzzle, palliative care and what it means to people with MND. We will also cover funeral and financial planning as well as what to do with social media

accounts.

Carers WA, in partnership with MNDAWA, will have counsellors available during this session.

2018 DATES

(Part A) - Tuesday 13th March 1.00 - 4.00pm(Part B) – Friday 6th April 1.00 – 4.00pm

(Part A) – Wednesday 25th July 5.00 – 8.00pm(Part B) – Wednesday 12th September 5.00 – 8.00pm

Carers WA At CarersWA - A carer is someone who provides unpaid care and support to family members and friends who have disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue, or who are frail aged.Carers WA provide counselling services Monday to Friday, 8.30am – 7.30pm. These include;• Telephone counselling – easily accessible (free from landline), free and ongoing counselling; • Face-to-face counselling – low-cost sessions are offered in a safe space in East Perth, Joondalup,

Rockingham, Gosnells, Mandurah and Fremantle; and Rural & Remote WA;• Skype & E-mail counselling – easily accessible, free ongoing counselling; • Bereavement counselling – for up to 6 months from point of notice.

For support or further inquiries please call the Carers WA Counselling Line on 1800 007 332 or email chat@carerswa.asn.au

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Christmas Function 2017

Each year, MNDAWA hold a Christmas Cocktail Function at the Mt Lawley Golf Club to recognise and celebrate those who have supported the MND community in that year. 2017 bought together over 120 people on Tuesday 12th December and all in attendance seemed to have an enjoyable evening.

Without the generosity and goodwill of the community the MND Association would be unable to continue our vital family care and support services. We would like to acknowledge and thank every single individual, community group, company and organisation that supported MNDAWA throughout 2017. Together we can make a difference, and with your help, we do make a difference to people living with MND and their families. Special mention should be made to the award winners of the evening:

Eleanor Mounsher Medal: Greg Hambley

President’s Cup: Ken MacLennanThe President’s Cup is awarded to an individual selected by the Chairperson who has gone above and beyond for people living with MND and willingly dedicated their time and expertise to support the work of the Association. We are indebted to the generosity of time, energy and organisational capacity of Ken MacLennan. Ken was awarded the President’s Cup in recognition of his leadership of the Drive for MND event over the past five years; resulting in an excess of $870,000 being raised for the Association, ensuring ongoing care and support of our members.Ken pictured left talking to the participants on the Drive for MND.

Volunteer of the Year: Frank TrafelaIt is a great privilege to recognise the volunteering efforts of Frank Trafela. In 2017 alone, Frank donated over 150hours to the Association in serving people living with MND. He has volunteered in almost every capacity possible including; bus transport, the craft group, administration help for the office, kitchen hand at functions, and fundraising events including the Walk to d’Feet MND and Street Appeal. Frank is a commited and dedicated volunteer of the Association, pictured left with Chairperson Karen Smart.

The Eleanor Mounsher medal is awarded to an individual each year who has shown outstanding commitment to the Association and willingly dedicating their time and efforts to the cause. Greg has been at the forefront of community fundraising for over 2 years and during this time he has assisted in raising over $280,000 for the Association and this amount keeps increasing. Aside from all his fundraising efforts, Greg is passionate and committed to supporting MND through volunteering and other community support.Greg pictured on the far left presenting a cheque from the Swim for Jim fundraising event with his family and Cara and Maeve from MNDAWA.

Thank you to all those who supported the Association during 2017.

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Dive for Dollars

Rottnest I s land

ONLY A FEW JUMP SPOTS LEFT!

www.divefordollars.com.au

Skydive from Rottnest Island and go ABOVE and BEYOND to raise funds for people living with Motor Neurone Disease.

Download the registration pack online:

Sunday 18th March 2018 - Rottnest Isalnd

For event enquiries contact the office on admin@mndawa.asn.au or call 6457 7355

Proudly supported by:

SAVE THE DATE!!

Walk in Honour, Walk in Memory, Walk in Hope

SUNDAY 6TH MAY 2018PERRY LAKES - FLOREAT

www.walktodfeetwa.com.auRegistration’s open in February!!

MNDAWA EVENTS

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Friday's “Ride 2 Rotto For Motor Neurone Disease” is a unique opportunity to ride your jetski to Rottnest Island. Friday’s Jetskis

have been lucky enough to be granted approval to hold this event as this is not normally permitted. By joining the ride you will raise awareness and much needed funds for Motor

Neurone Disease.

Walk in Honour, Walk in Memory, Walk in Hope

www.walktodfeetwa.com.auRegistration’s open in February!!

GET INVOLVED There are many ways to get involved with fundraising for the Association. You can choose to hold your own event or take on a challenge to raise funds for people living with MND. There are also other community events to get involved in and fundraise through them. Here are just a few events coming up in 2018...

ROTTNEST CHANNEL SWIM - SATURDAY 24TH FEBRUARYPORT TO PUB SWIM - SATURDAY 17TH MARCHHBF RUN FOR A REASON - SUNDAY 27TH MAY

CHEVRON CITY TO SURF - SUNDAY 26TH AUGUST

You can also support others in the community who are fundraising for the Association. Here are some events that others have coming up...

The Rotary Clubs of Attadale and Fremantle will be hosting the fifth annual Charity Golf Day on Friday 9th March 2017 at the Royal Fremantle Golf Club. Funds raised will be donated equally to the Motor

Neurone Disease Association of WA and the Spinnaker Health Research Foundation.

This event is hugely popular every year and as a result has already got a full field of players. BUT...there are a number of other ways you can contribute to the event:

• YoU coUld donate goods or voUchers for raffles, competitions, aUction items and event prizes

• YoU coUld sponsor a hole ($250) which enables YoUr bUsiness to be promoted

Full details are available upon request from Dr Rod Rate, rrate@tpg.com.au, 0411097333.

Major SponsorsRotary Club of Attadaleand Fremantle’s

CHARITY GOLF DAY - FRIDAY 9TH MARCH 2018

Co-Sponsors

FRIDAY’S JETSKIS ARE HOSTING THEIR SECOND “RIDE 2 ROTTO FOR MND” ON SATURDAY 10th MARCH 2018

Call Friday's on (08) 9524 5858 or visit www.fridaysjetskis.com.au for full event details.

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CommunityCBC CRICKET CLUB GALA DINNER

Jan Taylor, MNDAWA Board Member had the privilege of attending and giving a speech at the CBC 2017 gala ball held at the Pagoda Resort on 2 December 2017. Jan and her daughter Leonie enjoyed a wonderful night with over 100 guests in attendance. The CBC cricket club certainly did MNDAWA proud with MND cards and cornflowers at every dinner place setting. Hope puppies, MND pamphlets and change 4 change tins were also dotted around the venue.

50TH BIRTHDAY PARTY FOR RICHARD

DARK PHYSIC PRODUCTIONS

There was a very busy photo booth set up with those wanting a photo being asked for a gold coin donation, a silent auction and a raffle. A wonderful night thoroughly enjoyed by all that attended. A special mention to David Nolan - MC, Emma Gailbrath – Event coordinator and

Aleisha Kerrigan from Everlasting Events for the amazing attention to detail on the night.

Richard held a 50th birthday bash at the Hillary’s Yacht Club on Saturday 2nd December. Special mention goes to Richard’s wife Kylie, who’s brother Greg Maxwell was diagnosed with MND early 2017. Greg is 56 and currently lives in Broken Hill with his partner Dianne, where to this very day he continues to raise money for MND through charity rides and selling his paintings along with radio talk back shows raising awareness in Broken Hill and the surrounding areas. Rather than receive gifts Richard believed he has everything anybody can ask for, “I thought raising money for a very worthwhile cause would be more beneficial and MND of Western Australia was a no brainer. We were so happy that we raised a little over $1,100 on the night.”

Happy Birthday and thank you Richard from us all here at MNDAWA.

PRIME MOVERS

MNDAWA recently received a wonderful donation from Prime Movers Inc. Prime Movers are an exercise group for over 50’s within the Perth metropolitan area with approximately 5000 members. Each year during seniors’ week, Prime Movers have “free” classes offered to their members and in return members are asked to give a donation to a charity. MNDAWA was chosen as their charity of choice with $5,700 being donated to MNDAWA. Way to go Prime Movers!

Formed in 2012, Dark Physic Productions are an independent live theatre company in Perth. Dark Physic recently show cased “Carrie” The Musical during 6 – 21st October at the Phoenix Theatre in Hamilton Hill. MNDAWA was very fortunate with Dark Physic donating $1,349.00 from the proceeds of tickets sales of “Carrie”. This is the 2nd production where Dark Physic have very kindly supported our Association – a big

thanks to Ryan McNally and all those involved in the production.

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FundraisingThe 20-20 Swim for Jim fundraising campaign continued on the 21 January at the Grapes and Gallops, the biggest race meeting in Mt Barker. The Hambley Family who started the campaign in 2015 held a lunch in the ‘Jim Gilbert Pavilion’, for the first time and hosted 20 people for the day.They also held a wine auction, selling Magnums of wine from Great Southern wine producers, this being held for the second year. Collecting donations, raising funds through the tickets and auction, the day raised approximately $7,000.

MOVIE NIGHT

20-20 SWIM FOR JIM

Ruby and Morgan tied the knot on Wednesday 17th January - the same day as their third anniversary. This was no ordinary wedding however, as they said their vows in a shark tank at AQWA. Ruby and Morgan organised a wishing well at the reception to collect donations for MNDAWA in lieu of wedding gifts and raised over $2500 for people living with MND in memory of Morgan’s father Owen who passed away from MND in late 2015. Wishing Ruby and Morgan many happy years and a fun filled future together.

This is the first Grapes and Gallops since Jim Gilbert passed away from MND. He was one of the instigators in starting this coming together of the races and a wine festival 11 years ago. He worked tirelessly every year to make sure the day was a success. It has been a major event in our town for many years.A huge thank you to the Mt Barker Turf Club and the Great Southern Wine producers for their support of our fundraising. Thank you to Xorro Print and Signage Specialist for providing us with the banner.

RUBY AND MORGAN’S SHARK TANK WEDDING

CONGRATULATIONS GAEWYN AND CRAIG

Sarah who operates her home hairdressing salon came up with the idea of holding an outdoor movie night for her clients to raise funds for MNDAWA. The movie night was held on the 7th December in honour of her sister-in-law has MND. The night was a great success raising over $264 for MNDAWA.

On 26th November 2017 Craig and Gaewyn said I do at an intimate wedding with friends and family. They had a beautiful Sunday afternoon wedding at Mandurah Quays, celebrating with cocktails and canapés. Gaewyn explained that “we were so blessed in sharing our day with my wonderful loving brother Drew (who is living with MND)”. After 12 years together, Craig and Gaewyn decided presents were not necessary but we suggested donations to MNDAWA. Thank you Craig and Gaewyn for raising over $600 for people living with MND. Enjoy many more years together now as husband and wife!

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Community Fundraising cont.

We have so many generous groups and individuals who fundraise for the Association throughout the year and are so very grateful for all there support. We could not continue our vital family care and support services without the community’s generosity and goodwill. We always like to make mention of those who fundraise for the Association in our newsletter and share the stories with the MND community about everyone who is working together to make

PAT’S RIDEThe Northern Knights motorcycle group organised an inaugural ride on 26 November 2017 to remember Patricia Stevens who sadly passed away after suffering from Motor Neurone Disease.

Pat and her husband Pete, who also passed away recently, loved going out on their Virago motorcycle and side car affectionately known as “A Bit On The Side” at every opportunity with their motorcycle mates. The ride commenced at Lakeside Joondalup shopping centre and riders travelled the back roads to Gin Gin and

then finished the ride at the Bindoon Bakehaus & Café. About 40 riders participated in the ride including riders from the Joondalup Ulyses group. The group raised $947 from donations collected and all proceeds were given the The Motor Neurone Disease Association of WA. Thank you to the Northern Knights and supporters.

CAROLS FOR A CAUSE - RED DRESS CHOIRThe Red Dress Choir are a team of singers who came together at Christmas time to perform for their local community and beyond. They performed 22 shows in 23 days which is an incredible effort and chose to raise money for 4 charities; MNDAWA, Alzheimers WA, Camp Kulin and Starlight Children’s Foundation, which are all close to the choir members hearts, having a personal connection to each cause. The Red Dress Choir raised $2335.25 for MNDAWA alone in memory of Malcolm Barbera who passed away from MND in 2017.

thankyoua difference to the lives of those living with MND. If you have organised a fundraiser and would like your photo or story included in the next MND Matters please contact the office on phone: 6457 7355 or email: admin@mndawa.asn.au

‘Monty’ the 10month old Labradoodle also accompanied the choir to their shows and was ‘Santa’s Dog’ offering selfies for a small donation - thanks for your support Monty and the Red Dress Choir.

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Change 4

TOGETHER WE CAN MAKE A DIFFERENCE.

We would like to acknowledge our Change 4 Change collectors and the individuals, communities and

companies that have our Blue MND Cornflower boxes to raise awareness and funds for the Association.

Change 4 Change TinsMoira Laurence

Lisa ShieldsPatti Robertson

Patricia SimmondsYahava Koffee

Harvey Norman Western Australia CornflowersMr Charles Sims

Freedom Riders WAStaffordshire Bull Terrier Club of Western

Australia Inc.

Change

If you would like to put a Change 4 Change donation tin or Blue Cornflower box in your office or shop

front please contact the office on 6457 7355 or email admin@mndawa.asn.au.

Community

Christmas Appeal Thank YouTHANK YOU to all 177 people who have generously donated to our Christmas Appeal. The campaign has raised close to $16,000 to date which will make a significant difference to people living with Motor Neurone Disease and their families in WA.

Each year we hold two donation appeals which is a very important part of our fundraising income to enable us to fund our services outside of the Government funded MND Advisory Service, including support groups, equipment, the patient transport service, and specialised funding to support our families living with MND.

If you would like to donate to the Christmas Appeal you can do so online by visiting www.mndawa.asn.au or calling the office on 6457 7355.

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Donations made in Loving Memory of...

We send our heartfelt condolences to the families of...

David AggissLorraine Aikins

Cynthia AndersonStephen Bailey

Albert BantlemanAlicia Bickford

Les BiffinPamela BlakeDoug Bolton

Stephen Brown

Frank BussellThomas Cave

Lesley ChamberlainSandra CocksAllan Conroy

Jane D’AdhemarEnrica De Paolis

Peter DibbleDianne DobleMaree Finlay

Christine CoughlanIrene D’Cruz

Damian DelaneyYvonne EmbersonFrancesca Fuiello

Robert IburgRoss Jackson

Mark SmithurstCornelia Van Der Putten

Anita Weis

Dawn FlinkWilliam Forward

Wayne FouldsBetty GardinerGeorge GardinerEileen GardnerDavid GlenisterPeter GodfreyKen Gormley

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Owen GriffithsSpiro GrouzisGladys HarrisWendy HayesRobert HaynesMary HaywardJackie HibbertBeth Higginson

David HollyJean Jones

Peter KearneyVivienne KnightWinifred LeachFrank LeahyEric LockyerTony Lorian

Ena Rose MacPhersonRoy MahonyDennis Mahy

Sandra MarendoliRod McIlroyJohn McLeod

Stella McMahonRon McNamara

Maggie MilneDesmond G Nelson

Jean NilonBernard O’MaraFrank O’Mara

Valerie RangitaawaKeith Rimmer

Gwynva RumballHoward RumballMaxwell Rumball

Barbara SelbyIris Short

Fred SipmanMichael Smith

Michael (Mick) SmithPat Stevens

Robert TaylorPatricia ThomasAnders Thomsen

Joy VauseGraham Waddingham

Heather WallaceFaye WalshOwen Ward

Marian WatsonJanet Why

Elsa WilkinsPeter Wooldridge

Don WrightUrsula YongeSteven Young

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noticesi

Don’t forget we have partnered with Two Birdz an online shopping site that has access to all your favourite stores in one click. For every

purchase you make online through our site, we will receive a % as a donation. With hundreds of different online stores to choose from and the opportunity to support MNDAWA when you do your online

shopping its “Two Birdz” with one simple click.

www.mndawa.twobirdz.com.au

After a fulfilling four and half years working as the Association’s Fundraising and Events Manager, it is time for me to say farewell. It has been a privilege to have worked with the MNDAWA team and Committee of Management in raising vital funds and awareness for people living with MND and I have been honoured to have made so many treasured friendships and working partnerships over the years.

It has been an exciting (and somewhat challenging) journey developing the fundraising and events portfolio during my time here. Some of my highlights include; building the Walk to d’Feet MND to be the Association’s biggest annual community event, being a part of the inaugural MND Drive which is now (successfully) in its sixth year and my involvement with the MND community, sharing in many new fundraising campaigns and initiatives – notably the Ice Bucket Challenge – which changed MND awareness overnight.

I will be moving on to a new role within the not-for-profit sector working for the Royal Flying Doctor Service WA as their Events Manager. This is an exciting move for me, yet touched with sadness, as I say goodbye to the great team here and the MND Community.

I wish Andrew, the team and Committee of Management continued success in providing specialised care and support to families living with MND. Until there is a cure, there is care and together we can make a difference.Bye for now, Cara.

Farewell Cara

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MNDAWA EVENTS CALENDAR FEBRUARY - MARCH 2018

Date Event Time Venue and DetailsFEBRUARY

Thursday 1st Volunteer Meeting 1pm – 4pm Board Room

Friday 2nd Volunteer Bus Training

1pm – 4pm Board Room

Tuesday 6th Morning group Past Carers

10am-12pm Chocolateria San ChurroSorrento Quay, Hillary’s Boat Harbour

Tuesday 20th You, Me & MND 6pm – 8pm Board RoomTuesday 20th Carers Lunch 11.30am – 1.00pm Passmore RoomThursday 22nd Afternoon group Past

Carers2pm - 4pm Place of Reflection Kings Park. Bring afternoon

tea, drinks & chairs. Phone Heather 0418 929 672

Tuesday 27th You, Me & MND 6pm – 8pm Board RoomMARCH

Tuesday 6th You, Me & MND 6pm – 8pm Board RoomTuesday 6th Morning group Past

Carers10am -12pm Zamia Café,

May Drive, Kings ParkFriday 9th Charity Golf Day

(Rotary Club of Attadale)

12pm-7pm Royal Fremantle Golf Course

Tuesday 13th Starting the Conversation Part A

1pm – 4pm TBC

Saturday 17th Pamper Day 10am-2pm Passmore Room & Conference Room, Board room, Foyer & 1st Floor meeting room

Sunday 18th Dive for Dollars Day event Rottnest IslandTuesday 20th You, Me & MND 6pm – 8pm Board RoomThursday 22nd Afternoon group Past

Carers2pm - 4pm 120/27 Pearson Ave, Success

Home of Helen Schulz; phone: 9498 6719Tuesday 27th You, Me & MND 6pm – 8pm Board Room

APRILTuesday 3rd You, Me & MND 6pm – 8pm Board Room

Tuesday 3rd Morning group Past Carers

10am -12pm Baby Grumpy Sailor

Friday 6th Starting the Conversation Part B

1pm - 4pm Conference Room

Friday 13th Out of Your Mind 12pm - 5pm Conference Room

Saturday 14th Out of Your Mind 12pm - 5pm Conference Room

Tuesday 17th Carers Lunch 11:30am - 1pm Caffossimo @ WA Maritime Museum, Victoria Quay, Fremantle.

Thursday 26th Afternoon Past Carers Group

2pm - 4pm 66/7 Clere Pass, Canning ValeHome of Janne Parsell, phone: 6254 2536

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.

MEMBERSHIP:MNDAWA is a member of MND Australia, with a delegate Board. It has strong links with other MND Associations around Australia and internationally, and the MND Research Institute of Australia. If you would like to become a member or renew your membership please contact the office.

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DISCLAIMER:The articles provided in this newsletter sometimes contain personal opinions that may not reflect Board policy. Research articles are selected from reliable sources, we do our best to ensure currency and accuracy.

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The Niche, Suite B, 11 Aberdare Road,Nedlands, WA 6009Phone: 6457 7355Email: admin@mndawa.asn.auWeb: www.mndawa,asn.auABN: 49 312 430 982

Motor Neurone Disease Association of WA