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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.