mnd matters VOLUME 4, ISSUE 6. DECEMBER 2016 - JANUARY 2017
In this issue.....
Highlights of 2016 Support Groups Community Fundraising MND Drive
www.mndawa.asn.au 8 BOARD OF MANAGEMENT President: Karen Smart Vice President: Samar Aoun Treasurer: Helen Kraus Member: Gilly Smith Member: Gayle Macey Member: Lay Kho Member: Chau Kim Huynh Member: Jan Taylor
HONORARY POSITIONS 11 Hon. Solicitor: Mr Peter Murray Hon. Accountant: Mr Tony Silipo
PATRONS Narelda Jacobs Keith Potger, AO Kim Hughes
STAFF 14 Fundraising & Events Manager: Cara Ilsley Education & Support Coordinator: Julie Craig-Smith MOTOR NEURONE DISEASE MND Advisors: Cherylyn Vickery, Joan Ellis, ASSOCIATION OF Denyse Norman WESTERN AUSTRALIA MND Community Nurse: Lynne Lomax Centre for Neurological Support Accountant: Ling Lee The Niche - Suite B/11 Aberdare Rd Accounts Receivable & Administration Officer: Nedlands WA 6009 Kim Rolls, Anne King Phone: (08) 6457 7355 Administration Assistant: Michelle Henderson Fax: (08) 6457 7332 Email: [email protected]
1 MND Matters Volume 4 Issue 6 December 2016 - January 2017
INSIDE THIS ISSUE Feature Article: Highlights of 2016 3-4 From the Health Networks 5 MND Advisors Corner 6 Education 7 Support 8 Volunteers 9 Supporters in the Spotlight 10 The MND Drive 11-12 Community Fundraising 13-16 MNDAWA Christmas Raffle 17 Change 4 Change 18 In Loving Memory 19-20 Notices 21 Calendar of Events 22
A Christmas Message from President, Mrs Karen Smart May I take this opportunity on behalf of the Board of Management to wish all members and staff of the Association a joyful and Merry Christmas and a safe and Happy New Year.
2 Shed Light on the Matter Highlights from 2016 The Association was involved in a lot of new projects and initiatives in 2016, together with improving and maintaining our specialised services. Here are some highlights from the year that has been. MND Community Nurse by MNDAWA, PwMND felt better informed to MNDAWA is now providing a dedicated nursing make decisions to manage their health and resource to support people living with Motor wellbeing (an improvement from 77% in 2015 to Neurone Disease (MND) in WA over the age 82% in 2016). Some of the comments that reflect of 65 years. Registered Nurse Ms Lynne Lomax this satisfaction include: took up the newly created position from mid- “I think your organisation is wonderful June to work alongside the MND Advisors and and the support amazing. I cannot give the multidisciplinary team who co-ordinate and enough accolades” liaise with specialists that are involved in the care of MND patients. MNDAWA, in consultation with “I am simply knocked out by the specialist MND Neurologists, identified a need amount of care being offered” for a MND nurse to provide nursing leadership Similarly, family carers had an overall satisfaction and a clinical expert approach for patients who rate of 87.9% with the proportion of carers require more complex care. The Association agreeing/strongly agreeing that they feel more collaborated with the Neurological Council of supported and cared for (as a family carer) WA (NCWA) to assist in the development of a increasing from 85.3% in 2015 to 89.7% in 2016. clinical governance structure to enable this Comments from carers included: specialist position to be part of the MNDAWA “Our association with MNDAWA is care model. relatively recent. We have been so impressed with the support given to us. It Satisfaction Surveys is very hard but the support makes you Each year MNDAWA send out a satisfaction feel as if you are not alone” survey to our members living with Motor Neurone Disease and their carers. It is evident from the “Our MND Advisor is very quick to survey findings that people living with MND respond to any emails or phone (PwMND) and their family carers are highly calls with questions or concerns re satisfied with the information and support they symptoms we are seeing or she will were receiving from the Association. For PwMND, make suggestions on equipment or improvements in satisfaction were reported in advise where/who to contact for further all 16 services provided by MNDAWA. PwMND assistance. Very friendly, very helpful” had an overall satisfaction rate of 87.7% with These marked improvements are attributed the proportion of PwMND agreeing/strongly to the Association acting on the suggestions agreeing that they feel more supported and you provided in the 2015 survey, and putting a cared with an increase from 76.9% in 2015 to number of strategies in place to improve service 91.3% in 2016. As a result of the services provided provision. MNDAWA has been responsive to the 3 Highlights from 2016 needs of our clients and therefore the impact “Take a Break” respite program. SGIO donated of the services provided by MNDAWA was $200 from every goal kicked by a West Coast felt positively by both PwMND and their family Eagle during the AFL season. MNDAWA were carers. Many thanks to our board member, selected as one of three charities to benefit from Professor Samar Aoun, for her pro-bono time the campaign. and expertise. The Theodore and Isabella Wearne Telstra Business Awards – Charity Charitable Trust (Inc.) generously donated Category Finalists $40,000.00 to purchase a new Hyundai iLoad MNDAWA were privileged to be announced as to transport equipment items, the new van a finalist for the Telstra Business Awards alongside has affectionately been named “Carrie”. The four other charities within Western Australia, Charitable Trust also donated funds to purchase namely; Cystic Fibrosis WA, Midwest Charity our first wheelchair accessible transport bus in Begins at Home Inc, and Telethon Adventurers. 2014. Being recognised as a finalist in such a prestigious Australian Award is a testament to the TransAlta (Australia) donated $7,000 to dedicated MND community; our team, board MNDAWA for project development on the Walk of management, volunteers and supporters to d’Feet MND, our largest annual community and highlights MNDAWA’s commitment to event. Receiving financial support for the event providing specialised care and support services enabled the Association to purchase a event for people living with MND and their families. We marquee for registrations, together with signage congratulate Cystic Fibrosis who were winners of and start and finish banners for the walk. the award and share the same residence with us at The Niche. Community Fundraising We received overwhelming support from the New Information Session – “Difficult community during 2016 with numerous groups, Conversations” organisations and individuals volunteering A new information seminar called “Difficult their time to organise events and fundraising Conversations, sharing of information on end activities to support the Association. We are most of life issues” was introduced in June 2016. grateful to every donation received but would The seminar was developed as a result of the like to make a special mention of the following identified need from people living with MND, their fundraising campaigns that were run over the carers and families wanting more information on course of the year (or longer) to fundraise for the subject of end of life. Communication is the MNDAWA; key between loved ones living with MND, family members and doctors. This very topic was also The 20-20 Swim for Jim fundraising campaign the subject of new research by Notre Dame which raised an incredible $186,000.00 for the University and St John of God Murdoch who Association. The Hambley Family of Mt Barker recently published an article in the Fremantle decided to raise the funds in honour of their Gazette. Much of the feedback from the beloved cousin Jim Gilbert who is living with MND. morning was echoed by those in attendance This is the largest external community fundraising explaining that they found it very informative initiative undertaken by a single family for the and helpful. Association. Additional Office Support Country Women’s Association of WA who As of February 2016, MNDAWA were very pleased choose to raise funds for MND throughout the to welcome Michelle Henderson as part of the 2015/2016. The different CWA groups around team in the role of Administration Assistant. This the state organised events and activities to new role has provided consistency in receiving collectively raise $80,000 for MND. 75% of the phone calls and has also enabled the team funds were donated to MND research and the to have administrative support across each remaining $20,000 was donated to MNDAWA. department allowing the staff to further focus on developing their roles to benefit people living Darren’s Ride, is an ongoing fundraising with MND and their families. campaign headed by Kirsten Whitby in memory of her late Husband Darren who passed away Newly acquired Support and Funding from MND. Kirsten and her supporters raise funds MNDAWA were successful in receiving new through various initatives and activities and funding opportunities for several events and have raised over $25,000 to date with more initiatives this year. Listed below is some of the fundraising activities planned. new funding we received in 2016. Please note that this is only reflectingthe newly acquired New MNDAWA Website funding, we are most grateful for the continued MNDAWA were very proud to launch a new support of many of our major sponsors who have website this year. We extend our sincere thanks donated for many years. to Mr Stu Williams and Mr Adam Carriero of Shunt who spent over 150 pro-bono hours redesigning SGIO Suprisingly Good Goal Campaign the site to make it mobile responsive and SGIO donated $33,333 to MNDAWA for our interactive. 4 from the health networks Independent Living Centre (ILC) Jodie Maxwell, training and events officer of the ILC gives a comprehensive overview of the ILC services and how these can help. Assistive technology and equipment can office is based in Nedlands, the same building as open doors and break down barriers, directly MNDWA. ILC are a free information and advisory enhancing the quality of life for individuals by service which provides details on commercially contributing to: available products, do-it-yourself ideas, support services and assistance schemes in the areas • Improved wellbeing for the individual, of assistive technology and equipment and as well as their care givers and family environmental design. Equipment is not sold by members the ILC so there is no sales pressure. • Increased independence and social participation A new service to ILC is the Community Allied • Maximising quality of life Health Service which provides access to specialist information, assessment and therapist support Assistive technology and equipment can assist in your home, work, school or community. The people with walking; transferring and mobility; experienced team includes Speech Pathologists, communication; writing; reading; recreation; Physiotherapists and Occupational Therapists. hearing; telephone use; raising help in an emergency; computer access; environmental ILC Cockburn opened their doors in September control; transport; eating and drinking; bedding; 2015. Opening up a world of possibilities to seating; showering; toileting and continence; Perth’s ageing population and people with grooming; dressing and clothing; medication disability. Featuring WA’s first integrated Smart management; meal preparation; and much Home display, people can also see, trial and more. experience both high and low level assistive technology in an apartment style living There are more than 10,000 assistive technology environment. ILC Cockburn is a free advice and equipment products on the Australian service on a walk in basis between 9am – 4pm National Equipment Database. Located at Monday to Friday. www.askned.com.au these products may help people remain independent and improve their Speak to your MND Advisor about arranging quality of life. an appointment with one of ILC’s health professionals to discuss your individual needs. There are devices to assist with most aspects of The ILC can be contacted on 1300 885 886 or daily life so receiving advice and being given visit the website www.ilc.com.au We have some the opportunity to trial equipment at the ILC is fantastic videos that explain how ILC can help essential to making the best choice possible. you. The videos can be accessed through the YouTube icon at the top of the website home The Independent Living Centre WA (ILC)’s head page. Residential Care Facilities A note from Tony Johnson Hi my name is Tony Johnson and I am 81years young. I have had MND for approx 10 years. I Tony at moved into a lifestyle village about 6 years ago MNDAWA Christmas as I was finding it a bit of a challenge to upkeep Cocktail my 4 bedroom family home. Function in I loved living in the lifestyle village because I 2015 made some lovely friends and enjoyed the activities on offer. As my MND progressed I up my independence and my home. But this isn’t needed to engage outside help to assist me in the case now as I realise I can come and go as bathing, dressing and breakfast together with I please plus I have made new friends and there some home duties like washing and cleaning. At is no pressure to my life. I have lots of things to first this worked really well but as I became less look forward to, I go back to the Lifestyle Village mobile and needed a hoist it wasnt adequate. every week to catch up with my friends, xmas This made me very frustrated as I had to rely with my family, my granddaughters wedding, 3 on others for just about everything. In addition monthly catchups with my old swimming group to that the increased cost to get the right care not to mention all the wonderful MND events. was impacting on my finances. I therefore made If you are thinking that you need to move into the decision to move into Nursing Care. This Nursing Care my advice is to make sure you do has been a good move because I am getting your homework and find the right one for you. the right care 24 hours a day. At first I was a bit This debilitating disease is terrible but you need apprehensive about moving as I felt I was giving to face reality and live every day in the moment. 5 from the mnd advisors
The MND Advisors Corner is written by one of our 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. Pictured from left to right: Joan Ellis, Lynne Lomax (MND Community Nurse), Cherylyn Vickery and Denyse Norman. Hello everyone and welcome to the The warmer weather is welcomed by most of MND Advisors Corner. It is that time us and thus the attention required to good hydration. Alcohol is not inclusive of your water again when we are busy with the festive consumption. season of Christmas. We would like to offer a few friendly hints in making this Safety in and around the home is important to prevent falls. However, should an accident time as pleasant as possible for all of occur, please do not hesitate to contact an you. ambulance if required. Ambulance cover can be a separate minimal fee opposed to full 1. Don’t stress over the meal preparations. For private health insurance. those that are managing foods orally, keep the things you eat as simple as possible. Small Alarm pendants are a good device to have meals are just as much appreciated than for your additional support and security. These over indulgence. are available to you via the MNDAWA or Silver 2. Be mindful of MND fatigue when in the Chain. Please discuss further with your MND company of a lot of people. It is okay to take Advisor for more detailed information. time out and re-join the event when more rested. In the following year approximately around the 3. Buying gifts can be a financial burden on month of April, there will be some changes to the the credit card. Keep within the budget and WANRI Clinic, managed by Dr Edis. The Clinic’s remember time spent with each other has no relocation will be to the Sarich Neuroscience cost value. Research Institute, ground level. This is a new 4. Dress comfortably for the climate. building behind the current WANRI clinic on 5. If you are able to be away on holidays the site of Sir Charles Gairdner Hospital. Your arrange for a friend or neighbour to look after MND Advisor will keep you informed as time your pets and home. Planning in advance progresses, to the official opening date. takes the last minute pressure off you. 6. If there are additional guests staying with you On behalf of the MND Advisors we wish you all for Christmas, it is a reasonable expectation the best. that they will help you in the home. Your kitchen does not have to be your designated The MND office will be closed as of area. Monday 26th December, opening again on Tuesday 3rd January. 6 education Our Education and Support Coordinator, Julie Craig-Smith, is involved in organising MNDAWA’s education workshops, information sessions and support groups. Here is an overview of each of these areas in the past two months. For any details on the programs please contact Julie on [email protected] or phone 6457 7355. Hello... Having returned from annual leave, October and November have been filled with educational talks and workshops, support groups and events. As this is the last newsletter before Christmas, I wish you a joyous Christmas with your families and best wishes for the start of 2017! We held a Palliative Care Workshop The attendees were also fortunate to hear from for allied health professionals on past carer Marion Nairn who spoke about caring for her husband and how the role of being a Monday 14th November. carer impacted her family, and Drew Bathgate The workshop is held annually by the Association a client living with MND who gave a valuable and is open and free of charge for all health insight in to living with MND and his use of an professionals who care for and work with electric wheelchair to maintain his mobility and people living with MND. The workshop was independence. well attended by 35 health professionals who listened to presentations from 9 respected speakers including; Dr Rob Edis, a clinical neurologist who specialises in motor neurone disease and leads the MND Clinic at WANRI, Grace Buchanan, the Palliative and Support Care Education Team Manager at the Cancer Council Western Australia, Marija Nibali, home visiting respiratory nurse at Sir Charles Gardiner Hospital, Jan Stiberc, who has been involved and specialised in palliative care for over 20 years and works with the Metropolitan Palliative Care Above left: Drew Bathgate, right: Marion Nairn Consultancy Service. Lynne Lomax, MNDAWA’s Unfortunately our You, Me & MND Carers course own MND Community Nurse who is providing was cancelled due to a very small number of our MND clients over the age of 65 with clinical carers being able to attend with the course care, Jo-Anne Coughlan, Residential Manager finishing so close to Christmas. We will be at Juniper Annesley, and Cate Litijens, NCCCP organising the course for early next year and will Senior Counsellor at the MS Society. announce the dates in 2017.
I travelled down to Denmark on Monday 21st Dr Rob Edis November and presented to 12 allied health presenting professionals including nursing and residential on the pathophysiology care staff at the new Denmark Hospital. The and clinical Hospital has a new residential/respite care facility features of called Blue Wren. The staff were very grateful for Motor Neurone the visit and I was able to inform them of the Disease extensive services that MNDAWA offer and how we can work together collaboratively to support our MND clients. It was a great opportunity to meet with several of our clients and their families.
7 & support
ELBOURNE CUP LUNCH PAMPER DAY MWith the special occasion of the Cup, some Our second Pamper Day for the year was held past carers also attended the Get Together to on Saturday 19th November with our largest watch the big race. In the spirit of the race that ever attendance of 28 people. We would like stops the nation, we held a sweepstake with to acknowledge and thank the therapists who many $2 bets being placed. The best dressed volunteer their time in treating our clients and stallion was awarded to Allan Hough and the carers with various therapies including massage, best dressed filly was awarded to Margaret reflexology and reiki. We also learnt of Lynne Littley. There were some great headpieces Lomax’s, MND Community Nurse, new skill of but Patrick Whelan took home the prize with giving manicures, pictured below. the best hat who wore his hat all the way from Panama. The Get Together in November coincided with the Melbourne Cup. We set up the big screen in the conference room and had a wonderful afternoon, with fantastic hats and fashions. EMEMBERANCE EVENING ROn Wednesday 23rd November we held an evening for our families who have lost their loved one to MND. This is an evening to reflect and remember and was facilitated by celebrant Ken Booth. AST CARERS GATHERING PI attended the afternoon Past Carers group, who meet once a month in people’s homes. Thank you to the group for making me feel so welcome. Our other past carers group meet for morning coffee in various cafes.
8 upcoming volunteers support groups CHRISTMAS LUNCH This year, to celebrate the Festive Season, we will be holding a Christmas Lunch inviting INTERNATIONAL all those who attend our monthly Support Groups; Get Togethers, Carers Lunches, and both Past Carers Gatherings to enjoy VOLUNTEER DAY some festive cheer in the Conference Room Each year International Volunteer Day is on Tuesday 6th December from 11:30am. celebrated on 5 December, this year falling Please RSVP to Julie if you are able to on a Monday. The day was first established in attend. Our monthly Support Groups 1985 by the United Nations General Assembly will commence again in February 2017. and is celebrated worldwide by thousands of volunteers. We would like to take this opportunity to thank our incredible team of volunteers who assist the Association in a myriad of activities CRAFT GROUP including events, administration, bus driving, craft, gardening and much much more. We Garage Sale: currently have 187 active volunteers who have Vicki Bone is organising a Garage Sale in March donated 1,832.10 hours in the last 10 months. This 2017 and is appealing for people to donate equates to $44,135.29 in 2016 alone. items that she will be able to sell. Vicki and her husband Rod are willing to collect items within the Perth metropolitan area. If you have any 187 ACTIVE VOLUNTEERS = items to donate please contact Vicki on 9459 1,832 HOURS = 2362. $44,135.29 Upcoming Craft Stalls: The Craft Group continues to be busy, having This year the UN Volunteers Organisation are had recent stalls at the Stirling Farmers Market, encouraging people around the world to give South Perth Market and Westfields Whitfords volunteers a much-deserved #GlobalApplause Shopping Centre with more upcoming stalls at through social media engagement and use of Sir Charles Gairdner on Watling Walk on 7th and the hashtag. 8th December. Be sure to pop by and support them and if you have any items you would like to donate please contact Barbara Dodman on 9474 9938.
Barbara Dodman WE APPLAUD OUR VOLUNTEERS and Sue Delport AND PERSONALLY THANK EACH in front of the Craft Cupboard INDIVIDUAL WHO HAS DONATED organising all THEIR TIME TO MAKE A DIFFERENCE the items for the IN THE LIVES OF PEOPLE LIVING WITH upcoming stalls. MND. THANK YOU! 9 volunteers supporters in the spotlight
Harvey Norman Western Australia, included over 25 stores in Western Australia. and more specifically Harvey We would like to acknowledge the work of Steve Norman Osborne Park Superstore Lewis, a previous MNDAWA Board Member, who is dedicated to raising funds and awareness for - Electrical Department - have MND and has been the driving force behind been proud supporters and Harvey Norman’s continued involvement, sponsors of MNDAWA for over 4 organising all the fundraising luncheons and sitting on the committee of the MND Drive. years and raised over $130,000 for people living with MND.
Harvey Norman Western Australia are proud and dedicated supporters of the Association Steve Lewis pictured and have been since the inaugural MND right accepting his Certificate of Drive in 2013. Harvey Norman came on board Appreciation for his as a result of late Patron Ken Judge who was involvement in the passionate about getting companies involved MND Drive. to support people living with Motor Neurone Disease and the work of the Association. Harvey Norman has been a principal sponsor of every MND Drive and has put in at least one team each year to show their support for the event. Together with this they also host an annual luncheon as part of the Drive to raise awareness amongst the electrical appliance industry and raise their sponsorship dollars which go towards support MNDAWA’s largest fundraising event.
Harvey Norman’s sponsorship is not limited to the Drive and they continue be to supportive of the Association all year round; donating electrical goods to assist with prizes for raffles and auctions items, most notably donating $10,000 worth of prizes for our 2015 Christmas Raffle. The Osborne Park Superstore also have our Change 4 Change tins and cornflower boxes at their registers to raise awareness among their customers. Harvey Norman’s dedication to helping people living with MND is also acknowledged on a national level when the corporation ran a campaign for MND Awareness Week 2015, which 10 Southwest Adventure The driving force in Motor Neurone Disease fundraising and awareness
2016 saw the fourth MND Drive head off on a Southwest Adventure. This year the event reached capacity with 20 teams participating. Many of the teams returned for a second year having had a great time in the wheatbelt in 2015, with 2 teams having completed all 4 events, namely; David Whiteman of Ray White and Steve Lewis of Harvey Norman, teams from our two principal sponsors.
The Drive set off on Friday 21st October from the East Fremantle Football Club who have supported the Breakfast Launch for the previous 3 years. Thank you to the Past Players and Officials for putting on a delicious breakfast buffet and cheering us off once again. Narelda Jacobs, Network Ten presenter and MNDAWA Patron, sounded the hooter to start the event for 2016. From East Fremantle, teams headed south with a morning tea stop at Lake Clifton to see one of the oldest forms of life, lunch was organised at the beautiful Stirling Cottage and rose garden in Harvey, with teams pulling into Busselton for our first overnight stop at Abbey Beach Resort in the late afternoon.
George and his team at The Beer Farm in Metricup hosted the participants for our first evening event with entertainment from the fantastic and vibrant, G & T with a Twist and our touring musician the talented, Taylor Cutts. Much fun was had by all, with a successful live auction and raffle to raise funds for the cause.
Day 2 was Costume Day with a team of hippies, the adams family, Super Mario and many more colourful outfits. The best dressed 11 team was Team Poultney who dressed as pirates with a ginger beard to match, captured playing bowls on the previous page. The Rotary Club of Busselton organised and donated a cooked breakfast at the Menshed to get our teams ready for a big day ahead. The sun was shining making it the perfect weather for a game of bowls at our morning tea stop at the Bridgetown Bowls Club. We were then welcomed by Ria of Oakway Estate in Donnybrook who put on a picnic spread and wine tasting afternoon for our teams. Prior to reaching our final destination, the MND Drive signed and contributed a collection of Smurf Gnomes at the famous Gnomesville which houses thousands of gnomes left by travellers who visit the attraction. The second evening known as “the mystery destination” was nestled in the Wellington Forest at the Wellington Forest Cottages were teams had the experience of sleeping in original renovated forrester cottages.
The final day on the Drive was Blue Day, representative of the Blue MND Cornflower, the symbol of hope for people living with MND. The best dressed blue team was easily given to Paul, Andrew and Kahli who sported bright and shinning blue tracksuit outfits. Before reaching the final luncheon in Bunbury, the teams were led to Wellington Dam and shown the strikingly blue Stockton Lake. Narelda Jacobs, welcomed the Drive teams into Bunbury where the Tennis Club and Rotary Clubs of Bunbury, South Bunbury and Leschenault organised lunch for all those at the final function.
We are proud to announce that the MND Drive Association holds the event. Ken plans the route raised $170,000 for people living with MND, and works alongside the Association to ensure with 10% being donated to MND Research the event is a success. The Drive Committeee to assist in finding a cure and the remaining members, Steve Lewis of Harvey Norman, David funds going towards our specialised care and Whiteman of Ray White, John Dodman who links support services. All the teams participating in us in with each of the Rotary Clubs and obtained the event went above and beyond to fundraise new sponsors NAB, Mike Burton second in charge for the cause and all exceeded the fundraising of the route and Nicki WIlliams who assists with minimum of $3,000. Team Swim for Jim took home the events PR and media. The event crew over the trophy for the top fundraising team reaching the weekend include Mike Burton and Greg $24,063. Team Delaney’s Donkeys winners of Labrash who have been a part of the Drive Crew the trophy last year raised $19,255.57 and the every year and Taylor Cutts who participated West Coast Eagles team $16,152.12. Thank you in the inaugural Drive and has toured with the to every team who were so passionate and event for the previous two years as the much dedicated to raising much needed funds for loved entertainer. Newcomers include John people living with MND. Norgett who assisted at the tail end, Bec Byrne who assisted Event Manager Cara Ilsley, Rob We would like to acknowledge and thank Cox who captured the entire event through our principal sponsors: Ray White and Harvey photos, and Amanda Ghouse and Jo McCrea Norman who have supported the event since for assisting with catering set ups. Details for the its inception. Our print sponsors We Print It and MND Drive 2017 will be released very soon… Star Signs, together with other supporters who include: NAB, KC Sports, and all those who The MND Drive is proudly sponsored by: donated to support the live auction and raffles throughout the event.
The event would not be possible without the time and effort of our volunteers and the Drive Committee, most notably Ken MacLennan the Drive leader who is the inspiration and reason the 12 Community There has been a significant number of fundraising events happening in the community. We would like to acknowledge and thank everyone who gives their time so generously to organise events and come up with fundraising initatives. If you have fundraised for the Association and would like your story to be shared please contact the office on admin@mndawa,asn.au.
Drive Teams Fundraising Activities... WEST COAST EAGLES SORE HIGH The West Coast Eagles Drive Car Team, Katie Winsor, Amanda Cox, Melissa Burrows and Melissa Donaghey organised a Quiz Night to raise funds for their car with great success. They held the evening at Domain Stadium and had a full house with 26 tables sold. Andrew Horabin of Bullshift Company kept the guests entertained as the Quiz Master and they held a live auction and raffle to raise much needed funds. Karen Smart, MNDAWA President attended the evening to talk to the guests about the importance of community fundraising and the work of the Association. The Quiz NIght together with their other fundraising efforts raised an incredible $16,152.12 for their team car. Amanda Cox, CFO of the West Coast Eagles and team member of the Drive car team, visited the MNDAWA office to drop off the cheque and is pictured left with Fundraising and Events Manager Cara Ilsley.
WOOLWORTHS PUTT TO MAKE A DIFFERENCE FOR TEAM STOODLEY The team at Woolworths Perth Regional Distribution Centre organised several fundraising activities in support of Paul Stoodley’s team. They had some fun with a game of mini Putt Putt which was designed by the facilities team in-house just for the occasion. Anyone who landed a hole in one went through to an elimination round in the running for 1st, 2nd or 3rd prize. The team also organised a competition to see whether anyone could guess the last two digits from the serial number of a $100 note and also have raffle hampers filled with Woolworths dry goods and refrigerated items, collectively raising over $2000 for Team Stoodley.
13 Fundraising
$25,000 RAISED!! Kirsten Whitby, wife of the late Darren has been organising the fundraising campaign “Darren’s Ride” over the past year and recently announced that they have raised over $25,000! A huge thank you to Kirsten, her mother Robin and all their supporters who have assisted them in reaching their fundraising target and beyond. Funds raised from the campaign are being equally donated to MNDAWA’s specialised care TOLL GROUP GOLF DAY and support services and MNDRIA to assist Toll Group WA held their annual Golf Day on researchers in finding a cure. For more details Wednesday 12th October and chose MNDAWA on the campaign and any upcoming initatives as the charity to raise funds for on the day. Held Kirsten is organising visit: www.darrensride. at the Wembley Golf Course, Steve Lewis, then com.au. Board Member for MNDAWA, attended the evening function. Thank you to the events sponsors and players for supporting the day and cause. TOLL are ROTARY CLUB OF HILLARY’S still busy counting the funds raised and hope to have RAISE AWARENESS AND an update for the next newsletter. FUNDS AMONGST THEIR CLUB MEMBERS LISA GORDON CONTINUES TO The Rotary Club of Hillary’s invited MNDAWA to present to their members at their weekly RAISE FUNDS TO D’FEET MND meeting on Monday 14th November. Cara Ilsley, Fundraising and Events Manager, attending the evening and was presented Lisa has started her with a donation of $500 to support the fundraising for the Walk Association and people living with MND. to D’Feet MND 2017 and Thank you to Stuart Hyde for organising the has held a “Drink Tea for talk with MNDAWA. The Rotary Club have MND” and most recently a been supporters of the Association for over cake stall on Saturday 15th 16years and raised over $28,000 for people October at the Pinjar Park living with MND. Motorcycle Speedway, raising $160. Be sure to save the date for the Walk to d’Feet MND 2017 being Cara pictured held on Sunday 7th May with Stuart at Perry Lakes Reserve, Hyde, left and Floreat. Registrations for President Peter the event open in January McKenzie. 2017 at www.walktodfeetwa.com.au
14 Community THE CWA BEATLES/ ABBA BALL AT BADGINGARRA As part of the CWA state fundraiser the CWA Badgingarra Branch held a Charity Ball with a Beatles and Abba Tribute Band. They held an auction of several articles donated by local craftpersons and this was keenly contested by the 200 party goers. It was a wonderful night and over $12,000 was raised for MND. All over the State C.W.A. branches held STIRLING SILVER SINGERS innovative activities (from Garden The Stirling Silver Singers held a concert Parties to Wellie Boot Days) as on Sunday 5th November to raise funds for fundraisers and to increase awareness MNDAWA in memory of Jane Banner. The of Motor Neurone Disease, raising concert was a great success raising $200 for the $80,000, with $20,000 being donated Association from an afternoon tea and guests to MNDAWA for care and support gold coin donations. Jane Banner was a close and $60,000 to MNDRIA to contribute friend of one of the singers who dedicated the to MND Research in Australia. concert to her memory. Pictured above is the choir singing their hearts out at the concert. fundraising?
Would you like to fundraise for people living with MND and support the Association? MNDAWA relies heavily on the support and generosity of the community to enable us to continue our vital family care and support services. If you would like to fundraise for the Association or discuss ways in which you may be able to support us please contact Cara Ilsley, Fundraising and Events Manager on 6457 7355 or email admin@ mndawa.asn.au.
Bert Roberts, who passed away from MND in August, with one of his daughters, Vanda who had flown in from Sydney for the night
15 Fundraising SNAP FITNESS - PERTH CBD - 24HR CHALLENGE Jodie Ann Hornsey, Club Manager of Snap Fitness Perth CBD, organised a 24 hour challenge to raise funds for MND in memory of her Aunty Robyn Hornsey who passed away from MND. On Friday18th November at 4pm the spin bike started moving and 24hrs later, having covered 575km Snap Fitness Perth CBD had completed the challenge in honour of Robyn and people living with MND. Jodie Ann, cycled 12hours herself during the challenge and raised $1,500 for the cause. Well done to Jodie and her team.
OPEN GARDEN ROSE DAY Karen Davey opened up her beautiful garden on Wednesday 2nd November in memory of her friend Clair Smith. Karen has a compact but beautiful small garden with over 100 roses and lots of underplanting of many cottage garden plants, such as salvias, plectranthrus, Queen Anne’s Lace, pelargoniums, succulents, strawberries, lavenders and bright little nasturtiums every where. The Open Garden was by invite to friends and family with 50 guests in attendance. They had an array of delicious cakes for morning and afternoon teas and scrumptious mixed sandwiches for lunch. The guests paid $5.00 for entrance fees and read notices about what they could expect to see in the garden. Information about the Motor Neurone Association was also displayed to raise awareness about the disease and work of the Association. Rosey quotes were laminated and tied with pink ribbon around the garden which the visitors thoroughly enjoyed. Karen and her husband belong to the Heritage Rose Society in Perth Region which is a subsidiary of the worldwide group who promote the growing of Old and Heritage Roses. Guests paid $5 for morning and afternoon tea and lunch. Karen, with the help of her family and friends, also organised raffles, a lucky door prize, a plant stall and bric a brac stall. The Open Garden raised over $1000 in memory of Clair and in support of people living with MND. Pictured right are a vase full of some of the beautiful flowers found in Karen’s garden.
16 MNDAWA CHRISTMAS RAFFLE 2016 first prize: $1000 second prize: $500 third prize: $250 fourth prize: $100
4 Cash Prizes Raffle drawn to be WON! Wednesday 14 December at MNDAWA Christmas Cocktail Party. $2.50 per ticket All proceeds going towards our $50 for a book vital care and support services for people living with MND. only 6000 tickets available
Purchase a ticket or help us sell tickets by Permit Number: contacting the office on [email protected]. LS2091516
Major Sponsor Major Sponsor Rotary Club of Attadale and Fremantle
CHARITY GOLF DAY The Rotary Clubs of Attadale and Fremantle will be conducting a Charity Golf Day on Friday 10th 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. Last year the event generated over $22,000 for MNDAWA. You can contribute to the event in a number of ways: • As a player, you and three friends can make up a team (the cost is $130 per head) • You could donate suitable 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, [email protected], 0411097333. This is an enjoyable day, on a great golf course and it provides you with an opportunity to give further support to MNDAWA. Co-Sponsors: Beneficaries:
FREMANTLE HOSPITAL DOCTORS WHO DONATE 17 Change 4 Change Thank you to all our donors, fundraisers and supporters. We could not continue our specialised family support services without your support. 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. Permit Number: LS2091516 Change 4 Change Tins David Wearne Cornflowers Nukarni Football Club Harvey Norman Western Australia Jodie Kasatchkow Moira Laurence Moira Laurence Spiritualist National Union WA Inc
If you would like to collect donations with our Change 4 Change tins, display or Blue MND Cornflower Box or sell our merchandise please contact the office on 6457 7355.
18 We send our heartfelt condolences to the families of...
Frank Williams Pat Stevens Leslie Gadenne
Donations made in Loving Memory of...
Jane Banner Clair Smith
Tony D’Souza Michael Smith
Enrica De Paolis Frank Williams
Jenny Garswood Peter Wooldridge
Gary Goldsworthy Janine Stoodley
Peter Kearney Jackie Hibbert
John Robertson
19 The Cornflower
The Blue MND Cornflower is the national symbol of hope for Motor Neurone Disease. It may have a fragile appearance but it is hardy in nature which is representative of the remarkable strength people living with MND have.
We live in hope that we will find a cure for Motor Neurone Disease.
20 notices
AGM AND 2015/2016 ANNUAL REPORT
MNDAWA held our Annual General Meeting on Saturday 15th October. We had a quorum present with 36 members in attendance. The Association’s Annual Report for the 2015/2016 financial year was presented at the meeting and the new Board for 2017 was voted in. If you wish to receive or view a copy of the Annual Report, please contact the office on 6457 7355 or email [email protected]. au. We congratulate the executive of the Board for their nominations, namely Mrs Karen Smart on her election as President, the re-election of Professor Samar Aoun for her second term as Vice-President, and the new election of Treasurer, Helen Kraus. We also welcome new Board members Dr Lay Kho, Ms Chau Kim Huynh, and Mrs Janice Taylor. Remaining and re-elected members of the Board include Dr Gilly Smith and Ms Gayle Macey who is a member living with MND.
OUR SPECIAL THANKS
We would like to acknowledge and thank those who were on the Board during 2016; Mr Ross Whitman, President of the MNDAWA Board for the previous 14 years, Julie Touchell, Secretary of the Board for the previous 14 years, David Whiteman Vice-President and member for 12 years collectively, John Dodman member for over 4 years, Ian Davies Treasurer and member for the previous 18 months, Ken MacLennan who was a member for over 5 years, Steve Lewis a member for 2015/2016 and Bill Richardson and Mark Whiteman. Each and every Board member were extraordinarily generous with their time, wisdom and have remained committed to the Association’s mission and guiding principles. For this, we will always be sincerely grateful.
MND WESTERN AUSTRALIA SHARES RESOURCES WITH MND SOUTH AUSTRALIA MNDAWA, under the guidence of previous Executive Officer Maeve Egan, built a database specific to the Association’s needs and Health Department requirements. This database has made a considerable difference and noticable improvement for the MND Advisors. MND South Australia approached MNDAWA to see whether we could share these resources of which we willingly obliged. Database developer, Tony Williams, built South Australia a database similar to that of WA which has also assisted their team greatly with the management of their services. Most recently we have also shared our database manual wuth South Australia that was completed by volunteer Dr Sue Colyer who gave many hours to complete the document. This collaboration between the State Associations highlights the importance of collborating and sharing information for the greater cause of people living with MND.
21 MNDAWA EVENTS CALENDAR DECEMBER 2016
DATE EVENT TIME VENUE AND DETAILS December Tuesday 6th Christmas Gathering 11.30am- The Niche, Conference Room 1.30pm Wednesday Craft Stall 9am-2pm Sir Charles Garidner 7th Thursday 8th Craft Stall 9am-2pm Sir Charles Gairdner Wednesday Christmas Cocktail Func- 6pm-8pm Mount Lawley Golf Club 14th tion Thursday 15th Afternoon Past Carers 3pm Home of Cheryl Coates. group Christmas Party 20 Scouler Way, Bateman. Contact Cheryl on 9310 1757
The 2017 Calendar of Events will be released in the new year in MND Matters, February- March 2017, Volume 5, Issue 1. If you have any questions on upcoming programs or events please contact the office on 6457 7355 or email [email protected].
The MNDAWA office will be closed as of close of business Friday 23rd December to Monday 2nd January. We wish you an enjoyable festive season.
22 THANK YOU TO OUR SPONSORS AND SUPPORTERS:
We love the new look of our MND Matters Newsletter and we hope you do to. Thanks to Stu and Adam of Shunt for their work on our new look newsletter and guiding Cara on how to create the document. MEMBERSHIP: MNDAWA is a member of MND Australia, with a delegate Board. It has strong links with other MND Associations around Australia and internationally, and the MND Research Institute of Australia. If you would like to become a member or renew your membership please contact the office.
DISCLAIMER: The articles provided in this newsletter sometimes contain personal opinions that may not reflect Board policy. Research articles are selected from reliable sources, we do our best to ensure currency and accuracy.
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