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MSWA Bulletin Magazine Spring

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From the desk of the CEO

From the desk of the CEO MARCUS STAFFORD To quote the Bard! “Parting is such sweet sorrow”. So why experience that sorrow if it doesn’t make perfect sense?! The combination of the difficulty in finding my successor, paired with my commitment to the brilliant journey ahead, made the decision to stay on as MSWA’s CEO a delightfully easy one. As we work through the current strategic plan with discipline and passion and start to build our next one, I am truly excited about our future. An excitement that is translating into more work for the organisation’s managers and staff! Poor things. They might end up wishing that I’d gone away, after all! We are already into a new financial year and have so much to be proud of as we wrap up 2016-2017. The stand out success for this year was our record breaking contribution of .6 million to neurological research which is the largest in Australia’s history. Apart from the regular and ongoing support of a myriad of MS research projects, this includes: • 0,000 to the international research programme into progressive multiple sclerosis (MS); • 0,000 to WA research projects; and • 0,000 for research into other neurological conditions. On top of this, our care service hours increased by 8% for a total of 683,758 hours and our Annual Survey scores very highly, indicating that our Members are very satisfied with the care they receive. We have also been able to mark some big milestones in expanding our footprint. Earlier this month, we officially opened our brand new .5 million Community and Health Services Centre in Bunbury. I’m so pleased to have personally seen it open after all the hard work that’s gone into the Centre. My congratulations to all involved in bringing this award-winning facility to fruition. People with MS and other neurological conditions, living in Bunbury and the South- West, are now able to access a full range of services and support in these custom designed premises. At time of writing, there is no news on the State Government’s decision regarding the NDIS (National Disability Insurance Scheme) model. The signals continue to be mixed and with the passing of time, the roll out remains as per the signed bilaterals. My expectation is that the final model will probably have a Federal flavour, but retain a sensible degree of local autonomy. Words like ‘hybrid’ come to mind, although the devil will not only be in the detail, but also the ongoing tweaks and changes as the Scheme unfolds. Irrespective of the final nature of the model, MSWA will make it work! Meanwhile, within the organisation, business continues as usual, with the overarching philosophy of challenging everything that we do as we strive to get better and better. As we continue to grow services, build our footprint and fund research, we need our brand marketing and sales teams to help finance those lofty ambitions. And they are! On the very same week that I renewed my commitment to MSWA, the Annual Dinner and Auction delivered a fantastic result in what attendees described as the best one yet. Also, in the face of new competition, our Mega Home Lottery sold out. Our new General Manager of Brand, Marketing and Sales, Paul Cavanagh has just joined the team. He is a fantastic acquisition for us, bringing a fresh perspective and determination to build on the outstanding results already delivered. I congratulate Paul on joining the best organisation in Western Australia, if not Australia, if not the world. But perhaps I am a little biased, borne by my decision to stay! What’s coming up? As you know, we have secured land in Butler with plans to build a hub for services and accommodation, and we are now finalising plans for its development. Stay tuned. I look forward to the privilege of writing many more Bulletin articles as we continue our journey to help folk with MS and other neurological conditions. Do you want to receive the Bulletin online? Want monthly information updates? Register your email address today to start receiving our monthly Vitality e-newsletter and the Bulletin magazine online. Just email damien.hill@mswa.org.au or call 9365 4814 and let us know your current email address. 4 | MSWA BULLETIN SPRING 2017

Letter from the Editor DR GREG BROTHERSON Welcome everyone to the spring edition of your Bulletin. We have more to celebrate this month than just the turning of the season as the decay of winter gives way to a time of renewal in spring. In the spirit of regeneration, we also have the celebration of Marcus withdrawing his resignation. This news became public when announced at the MSWA Dinner Auction on 24 August, and was met with a resounding ovation by everyone, punctuated with squeals of delight. On behalf of all people with multiple sclerosis, thank you Marcus. General Manager Member Services Sue Shapland succinctly sums up this moment in her article when saying that it “was really welcomed by Members and staff alike. With so many exciting plans for the next three or more years his leadership will be a real asset, as it has been for the past fifteen years.” Let me add that as a person who confessed in the previous edition of the Bulletin as being absolutely ‘drained’ by the news of his resignation, like many others who felt the same, we are now rejuvenated and more than delighted that Marcus has decided to remain as CEO. We also bring you the sad news from inside MSWA, of a great loss with the passing of Betty Cuthbert. I have lost count of how many times I have been asked how it is possible that the fastest woman in the world over all sprint distances was struck down with multiple sclerosis. The short answer was, and still is, nobody knows. It is also a question couched in scientific terms being asked by researchers funded by MS Research Australia, to which MSWA is a major contributor of research funding – .6 million this year. Is it a problem in the myelin producing cells themselves that causes them to begin dying? This could then trigger the immune and support cells in the brain to respond to clean up the damage and that in turn triggers a bigger immune response. Or is it a flaw in the immune system (which some of the genetic studies suggest) that allows the immune cells to become ‘trigger happy’ and set off an inflammatory response in the brain with minimal or no provocation? The mystery continues. But what is certain is that the work done by Dr Parratt and Professor Prineas helps us to rule out some possibilities and allows us to keep moving down other lines of investigation to bring us closer to solving the mystery (MS Wire, August 2017). The mystery therefore remains, and it is this tormenting illness that adds to the mystique which surrounds Betty Cuthbert and moves so many people to sing her praise. Bruce McAvney said in The West, “Betty is still the only Australian non-swimmer to win three gold medals at one Olympic Games and that’s an incredible feat.” A much-admired champion confined to a wheelchair, robbed of her speech and vision, Sue Shapland says ‘Goodbye’ to Betty on behalf of the Members and staff of MSWA. Vale Betty Cuthbert. All of this is true, but to my mind what also sets Betty apart from other Olympic champions is her battle with an evil disease, and in that regard Betty is no different to the rest of us who have been diagnosed with this illness. We must therefore never forget that incredible feats of endurance are also a daily occurrence performed with dignity by every person with multiple sclerosis, which includes every carer who rides the emotional rollercoaster alongside his or her loved one, a mystery journey caused by this nasty piece of work. Elsewhere in this edition, you will find the latest roundup of Research articles including the long-awaited release of OCREVUS (ocrelizumab), the latest medication added to the PBS listing. A lot of hope is pinned to this diseasemodifying drug which promises some relief for people with the progressive type of the disease. That prospect we shall just have to wait and see. Nigel Carey updates you on the NDIS; Maurice Blackburn, lawyers, discusses superannuation and employment. Rob Orr, Counsellor, tells us what the difference is between counselling and having coffee with a friend. We have the effervescent Dawn Burke contribution on volunteering, and our regular input from Ros Harman and Narelle Taylor. Finally, we have news from Treendale Gardens which celebrated its fifth birthday, and Albany brings us their latest Outreach news. MSWA BULLETIN SPRING 2017 | 5

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