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VOLUME I, 2018

Thank you for being a part of MS Queensland’s 60 year history. It’s you, our community, that are at the heart of what we do.


MS LIFE

VOLUME I, 2018

EDITOR'S NOTE

Highlights...

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It’s just my second edition as Editor of MS Life and I’m so excited to bring you this ‘MS Life Volume I’ special edition for our 60th birthday year. I’ve had so much fun looking over our history and it’s very humbling to see how MS Queensland grew from the vision and initiative of one young man living with MS, Graham Neville Johnston, and the support of Mr. Bill Mathers whose wife lived with MS.

Spotlight on Regional Queensland

Research - how far we’ve come...

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It’s approaching one year since I joined MS Queensland and I feel very privileged to be part of our 60th year. In my Editor’s Note in our Spring Edition, I spoke about how amazed I was at the dedication of our staff and supporters and how your inspiring stories of living with MS made coming to work so worthwhile. None of that has changed for me. Instead, since then, I have met many more people who show me how important it is that we continue to aim for greatness. Every day since joining MS Queensland, there is a reminder of why I did so and it is usually someone living with MS – a carer, volunteer, or person with MS. The ‘Our MS Community’ feature brings together some of the people who make up this community (past and present). We could have filled this entire magazine with special people, so I look forward to bringing you ‘MS Life Volume II’ which will highlight more of our community.

Reflecting on our housing

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I hope you find this edition as interesting as I did putting it together and I especially hope you feel truly inspired and proud to be part of our beautiful MS Queensland family! I’d like to personally thank Robbie and Katherine Carr, Heather Roman, Gail Harbott, Ingrid and Geoff Blake, Ronda Bennett and Terran Hassell for allowing me into their lives by sharing their stories with me during my time with MS Queensland.

MS PUBLISHED BY MS QUEENSLAND 286 GLADSTONE RD, DUTTON PARK QLD 4102 MS (07) 3840 0888 © MS QUEENSLAND 2018.

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For the past 60 years, MS Queensland has provided information, care and support to Queenslanders diagnosed with MS, and more recently, other chronic, progressive neurological diseases.

Welcome to Volume One of our special 60th birthday edition of MS Life!

Celebrating a 60th anniversary is a significant milestone for anyone of us and probably more so for an organisation with such humble beginnings that saw a mob of families, united in their struggle, come together in 1958 to found the Multiple Sclerosis Society of Queensland so that no-one would face MS alone.

greatly to these efforts of discovery through collaboration and by providing funding for some of Australia’s most ground-breaking clinical research and we are committed to continually increasing our funding for MS research each year in the hope that it will bring us closer to a cure.

With much to reflect on from the last 60 years, we can only begin in respectful celebration of the lives of people living with MS, their families and carers. They started it all and continue to be the centre of everything and the reason we still exist.

We also recall the critical role of Granston Lodge - the very first step of our specialist disability housing journey which began in 1974 - and celebrate the opening this year of our first Project Dignity 120 apartment project in Springfield, heralding a new era of accessible, age-appropriate housing solutions for people living with MS and other progressive neurological diseases in Queensland.

It is astounding to realise that for more than half of our history, no diseasemodifying therapies were available to people until approval in 1993 of the In this 60th milestone year we are also in first interferon treatment for relapsingthe final roll-out stages of the remitting MS. The last 25 years has revolutionary National Disability particularly been an era of discovery and Insurance Scheme (NDIS). It brings today there are 13 such options available life-changing opportunities for people in the treatment “armoury”, including a living with MS and other progressive recently approved world-first for primaryMS life neurological diseases to access properly progressive MS. I am proud that over the funded services and support. years MS Queensland has contributed MS life

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Critically though, even as we invest substantial time and energy in getting the best from the NDIS, we refuse to lose sight of the broader needs of more than 3,700 Queenslanders living with MS nor the more than 10 people diagnosed every week who will call on our help at some point. This is why we continue to expand our footprint across Queensland to ensure all people living with MS can access our services, including those over 65 or otherwise not eligible for the NDIS. We have always, and will continue to, put customers’ needs first, regardless of being an NDIS provider. While we receive some government funding at MS Queensland, there is always a shortfall in the funds we need to deliver our expanding mission, which means fundraising has always been an essential aspect of our DNA and now, more than ever. We can do very little without the generosity of the wider community and we are extremely grateful for the strong support we receive and promise to never take this for granted. Thank you!

So in this 60th birthday year, we recommit to people living with MS and other progressive neurological diseases in Queensland, to be there when and how you need us; to meet you where you’re at; to be approachable and real; and to support and connect you. On behalf of everyone at MS Queensland - past and present - it has been a privilege to play a small part in the story of this incredible organisation; and just as it was back in 1958, we too look ahead, steadfast in our quest to fight MS and with great hope for a world free from MS and its devastating impact.

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Director of Services The past year has been such a time of change for the MS Queensland Services Team as well as you, our customers. We’ve continued to keep pace with the roll-out of the National Disability Insurance Scheme (NDIS), all whilst launching our SPARK NeuroCare model of coordinated care, expanding into the regions across Queensland, opening our first ‘Progressive Neurological Disease Wellbeing Centre’ in Toowoomba and completing the build of our Project Dignity 120 Apartments in Springfield. Our 60th birthday year has certainly been busy and it’s showing no signs of slowing down. In this birthday year, it is bitter sweet as we say farewell to Granston Lodge but have the privilege of watching our residents move into their new homes in Springfield. All of our residents are expected to finish moving home by July this year.

Service Coordinators to ensure we have the resources to support all of you across Queensland. Tas talks a little bit more about this in his Service Coordination Update (page 13). We’ve had lots of excitement in our NeuroPhysio Team as well this past year. We’ve welcomed another NeuroPartner, CQ Physio Group, to provide skilled and relevant physiotherapy services to our customers across the central Queensland region. NeuroPartner is an innovative alliance between MS Queensland and selected health providers. We are passionate about ensuring high quality service solutions are available in your local communities, wherever you are in Queensland. Our NeuroPartners ensure this level of service is available to communities where we do not currently reach. NeuroPartners complete a rigorous application and approval process to ensure they provide high quality evidence-based services.

Along with the big task that is the move, we are prepared and excited for the roll-out of the NDIS It’s a hugely exciting time for us at MS Queensland and we look forward to bringing in the south-east corner and Cairns regions. Brisbane through to the Gold Coast plus Cairns, you along on the journey with us as we continue put you at the centre of everything we do and will have access to the NDIS from provide coordinated, caring and quality support 1 July 2018. Please make sure you get in touch with our NeuroAssist Team to make sure you’ve to our community. taken the initial steps to prepare for the NDIS. If you’re over 65, please still get in touch with us if you’d like to discuss your options under My Aged Care. We’re here to support all of our Contact our NeuroAssist Team on 1800 177 591 MS lifor feall of your NDIS and My Aged Care questions. community living with MS and other progressive neurological diseases, whether you’re eligible for the NDIS or not. We’ve expanded our MS life NeuroCoordinate Team and SPARK NeuroCare

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Not only has the world’s understanding of MS evolved so much over the 60 years that MS Queensland has been in existence, but we have also learned so much about disability services and supporting people living with MS as an organisation. This is apparent when reading through some of these milestones and especially in the terminology used when referring to people with a disability. What we can say is that MS Queensland’s services were established with warmth and care, and people living with MS at the heart of what we do. This is something that after many years has remained constant. Just four years from the establishment of MS Queensland, we were taking strides to providing essential services to people living with MS.

OUR HISTORY CONTINUES OVER THE PAGE...

MS Queensland funds a survey into the domestic and social needs of people living with MS conducted by the Department of Social Studies at the University of Queensland.

1964 MS Queensland purchases its first property at 179-181 Maldon Street, Dutton Park with a vision of it becoming an MS Centre. The purchase was made possible by a very large interest free loan of $4,000 from Mr. Mathers.

1963

The Welfare Committee is formed, concentrating on patient services including home visits, transportation, offering communication assistance and keeping people living with MS in touch with one another. The establishment of an MS clinic is the primary focus of the Welfare Committee.

1967 MS Queensland purchases its second property at 177 Maldon Street, Dutton Park for $7,500. The vision is to build a Rehabilitation andMS Treatment lifeClinic. This is what will soon become Granston Lodge.

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A home at Runaway Bay which was purchased for $35,000 becomes available as a respite/holiday home for MS Queensland customers and their families.

MS Queensland commences delivering physiotherapy, signaling a new era in support for people living with MS.

A multidiagnostic rehabilitation unit is opened in Townsville.

The first three independent accommodation flats are purchased in Denbigh Street as an alternative option to nursing home care.

A Bundaberg activity therapy centre is officially opened.

Granston Lodge officially opens on 8 September 1974 by the Hon Sir Gordon Chalk, Deputy Premier and Treasurer of Queensland.

1976 The MS Queensland Neurological Rehabilitation Unit is officially opened.

Audrey Smith, Beryl Holland and Kath Palmer volunteer at Granston Lodge every Wednesday. The ladies are known as the ‘Wednesday Ladies’ and become an institution.

1981 The Granston Lodge canteen is built by Boggo Road prisoners. They also build the laundry trolleys both of which are still in use today!

Granston Lodge receives air conditioning at a cost of $35,000.

Granston Lodge expands from 40 to 60 beds. The project costs $250,000.

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A physiotherapy unit is established for people living with MS and other progressive neurological diseases on the Gold Coast. MS life

MS Queensland establishes Australia’s first MS Clinic, a centre of excellence at the Royal Brisbane Hospital led by Queensland MS Research Professor Michael Pender. The MS Clinic continues today and MS life focuses on MS treatment, information, diagnosis, research and education.

MS Queensland appoints its first fulltime Regional Service Coordinators.

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Gina Lollobrigida visits MS Queensland as part of a national fundraising campaign ‘Aid to MS’. The money raised funded the building of an indoor heated swimming pool on the ground floor of Granston Lodge.

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Granston Lodge accepts its first residents from 3 June 1974.

The ‘Southside Handicapped Persons Day Centre’ opens, operating from the ground floor of Granston Lodge.

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The foundations for Granston Lodge are laid.

A part-time Occupational Therapist is hired and weekly pottery classes are introduced - which still continue today!

MS Queensland proudly announces that “no known requests for assistance in any form were refused in the 1969-1970 financial year.”

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The Services Management Advisory Committee (SMAC) is formed, providing a forum for communication, advice, and feedback regarding MS Queensland services.

We begin focusing on Neurological Physiotherapy intervention for people living with MS in line with evidencebased research and clinical practice. These therapies have since benefited thousands of people.

We officially open the Annerley Apartments, an independent living model with four modern townhouses designed to cater for people living with MS who require 24-hour support.

MS Queensland opens an office in the heart of Townsville servicing North and Far North Queensland. This is its third regional office.

2013

MS Queensland CEO Lincoln Hopper forms the NeuroCare Network, an alliance of 11 not-for-profits representing at least 35,000 adults and children living with progressive neurological and neuromuscular diseases in Queensland.

We purchase our first block of land for the Project Dignity 120 initiative, in Springfield. Project Dignity 120 aims to build 120 new high need, independent living apartments across Queensland to bridge a critical gap in the availability of high need housing with quality support services.

2017 We introduce NeuroPartner, an alliance between MS Queensland and selected health providers across Queensland.

We open four units of accommodation in Lutwyche called the ‘Spectrum Apartments’ in collaboration with BHC Creating Livable Communities. The apartments go on to win the ‘Urban Development lifeExcellence in Affordable Institute ofMS Australia’s Housing Award’ for Queensland.

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2014

We open a regional office in Rockhampton.

2016

The largest health and disability reform in a generation is introduced with the implementation of the National Disability Insurance Scheme (NDIS) in Queensland. Our first NDIS customer is in Townsville.

MS Queensland and University of Queensland jointly win the Uniquest Partners in Research Excellence Award (PIREA) in recognition of the jointly developed ‘Mindfulness with MS’ program.

MS Queensland approves its first NeuroPartner Australian Unity to deliver home care and disability services.

Led by MS Queensland, SPARK NeuroCare, a brand-new service initiative as part of the NeuroCare Network opens its first office in Townsville delivering direct support to people living with MS and other progressive neurological diseases.

We expand our reach and launch seven new neurological services under the NeuroServices suite. This includes: NeuroAssist, NeuroCoordinate, NeuroPhysio, NeuroWellbeing, NeuroFunction, NeuroHome MS lifeand NeuroNurse to service people living with MS and other progressive neurological diseases.

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MS LIFE

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SERVICES

The SpeediCath range offers hydrophilic intermittent catheter solutions for individual needs, preferences and lifestyles both for men, women and children who need to catheterise.

2017 We open the Albany Creek Apartments which provide age-appropriate housing for eight young people living with MS or other progressive neurological diseases with high care needs. The Albany Creek Apartments are a partnership between MS Queensland, Youngcare and the Queensland Government.

Find out what SpeediCath is right for you by contacting Coloplast on:

1800 856 306

www.coloplast.com.au/products/ Find-the-right-product

MS Queensland approves its first NeuroPhysio NeuroPartner with Active Physio Mackay approved to deliver neurological physiotherapy to MS Queensland customers.

In partnership with The MND and Me Foundation, MS Queensland introduces dedicated MND Service Coordination in South-East Queensland.

We open a new multipurpose ‘Progressive Neurological Disease Wellbeing Centre’ in Toowoomba in collaboration with six not-forprofits along with Australian Unity and other health providers.

2018 MS Queensland welcomes Byron Hudson from Coloplast offering a continence/catheter assessment service free to our customers.

MS Queensland welcomes its second NeuroPhysio NeuroPartner with CQ Physio Group being approved to deliver MSphysiotherapy life neurological to MS Queensland customer across Central MSfrom Queensland April 2018. life

We open an office in Bundaberg.

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MS LIFE

VOLUME I, 2018

NDIS NEWS WHERE A RE WE U P TO WI T H T HE

Ndis?

The roll-out of the National Disability Insurance Scheme (NDIS) across Queensland began in early 2016 in Townsville and it has continued in stages by local government area with the final roll-out finishing in January 2019.

take part in the NDIS, however, if you are already receiving services funded under the existing disability support system, you will continue to do so until you transition to the NDIS.

We’re very excited to be getting closer to the final roll-out of the NDIS and look The NDIS is available to all those who meet eligibility requirements, regardless forward to continuing to support our customers who are both eligible and not of whether you currently receive eligible for the NDIS. disability supports or services, and it’s not means-tested. You may meet the access requirements to become a participant up to six months prior to IF YOU ARE OVER 65, WE CAN STILL HELP the roll-out date in your region. You also YOU. PLEASE CONTACT OUR FRIENDLY do not need to be registered with the NEUROASSIST TEAM ON 1800 177 591 OR existing disability support system to AT INFO@MSQLD.ORG.AU.

1 January 2016

1 July 2016

1 November 2016

THE NDIS QLD EARLY LAUNCH COMMENCES IN OF TOWNSVILLE, CHARTERS TOWERS AND PALM ISLAND

TOWNSVILLE, HINCHINBROOK, BURKEDIN, WEST TO MOUNT ISA AND UP TO THE GULF

MACKAY, ISAAC AND WHITSUNDAYS

TOOWOOMBA AND WEST TO THE BORDER

1 July 2017

1 October 2017

IPSWICH, LOCKYER, SCENIC RIM AND SOMERSET

BUNDABERG

1 July 2018

1 January 2018

ROCKHAMPTON, GLADSTONE AND WEST TO THE BORDER

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BRISBANE, LOGAN, REDLANDS, GOLD COAST AND HINTERLAND, FRASER COAST, NORTH AND SOUTH BURNETT, CHERBOURG, CAIRNS, CASSOWARY COAST, MS li fe TABLELANDS, CROYDON, ETHERIDGE, CAPE YORK MS liAND feTORRES STRAIT

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1 January 2017

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1 January 2019

SUNSHINE COAST, NOOSA, GYMPIE, MORETON BAY INCLUDING STRATHPINE AND CABOOLTURE

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NEWS T H E A LT E R N AT I V E F O R T H O S E O V E R 6 5

My Aged Care With much talk about the roll-out of the National Disability Insurance Scheme (NDIS), it’s not surprising that those who are over 65, are feeling forgotten. My Aged Care has not been as publicly promoted as the NDIS but it’s the reliable alternative for those living with MS or other progressive neurological diseases who are over 65 and therefore not eligible for the NDIS.

HOW TO ACCESS MY AGED CARE

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SUPPORTS AVAILABLE THROUGH MY AGED CARE Help at home • personal care like help getting dressed • transport • modifications to your home like hand rails or ramps • nursing, physiotherapy and other care • meals • household jobs like cleaning or gardening • equipment like walking frames • social activities Short-term help • when you have had a set-back and want to get your independence back • recovery from an accident or illness, including after a hospital stay • when you or your carer needs a break (respite care)

Find out what services are available Are they the services you are looking for? Call My Aged Care You will be asked questions over the phone to help work out your needs and care arrangements – this takes at least ten minutes and you will need your Medicare card. If you would like someone to call My Aged Care on your behalf or you are calling for someone else, you will need consent to do so.

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Have a face-to-face assessment My Aged Care will arrange for a trained assessor to come to your home where they will assess your care needs and eligibility for services. They will work with you to develop a support plan that addresses your needs, goals and preferences.

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Find out about costs My Aged Care and service providers such as MS Queensland can give you information about costs. You will be told if you need a financial assessment.

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Choose services The service finders on the My Aged Care website can help you locate and compare Care in an aged-care home some services in your area once you know MS li fe type of care you are eligible for. If you find you need ongoing help with which day-to-day tasks or health care, a Your assessor and My Aged Care can also feyou find a service provider in your residential aged care home lets you live in MS li help a supported environment where help is local area that meets your needs. available 24 hours a day. MS life 15

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Service Coordination Update FOR MORE INFORMATION ABOUT MY AGED CARE ... 1800 200 422 myagedcare.gov.au

YOU CAN ALSO CONTACT OUR NEUROASSIST TEAM... 1800 177 591 info@msqld.org.au

The introduction of the National Disability Insurance Scheme (NDIS) has changed the landscape for so many. It will change the lives of so many of our customers but it also affects the way MS Queensland operates. This past year has been one of great change for our team of Service Coordinators as we adapt to this new landscape. Our team has continued to expand as we work to ensure we continue to support all customers both those who are eligible for the NDIS and those who aren’t. The team is now based and working from more local communities than ever before, including Service Coordinators now based in Bundaberg and Cairns and regularly servicing the Mackay region. We also have two Service Coordinators (sponsored by MND & Me), Julia Spotswood and Sarah Durand, who are dedicated to supporting our customers with Motor Neurone Disease (MND). As the NDIS continues to roll out, we have revised our team structure to ensure we continue to put you, our customers at MS we fe the heart of whatli do. You are our priority, which means life if you have aMS question that you would have previously asked

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your Service Coordinator, you can instead reach out to our friendly NeuroAssist Team as the first point of contact. This is to ensure we can support you efficiently and provide you with the best customer experience possible without relying on a single Service Coordinator contact. The NeuroAssist Team can help you with many enquiries, and where they can’t, they will direct you to the right place and this may well be a Service Coordinator. Our team of Service Coordinators (Amanda, Angie, Aylin, Belinda, Chris, Janice, Kerrie G, Kerrie M, Lone, Max, Natasha, Sharyn & Winnie) are here to support you to navigate and access both the My Aged Care and the NDIS; along with being a proud NDIS registered provider of Support Coordination. Despite the changes occurring in our world, it is a very exciting time for us all and we look forward to seeing the benefits of the NDIS being realised across Queensland.

YOU CAN CONTACT OUR NEUROASSIST TEAM ON 1800 177 591 FOR ANY QUESTIONS ABOUT SERVICE COORDINATION AND OUR SERVICES

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NEWS

VOLUME I, 2018

LO C A L C A R E A N D S U P P O RT

Spark NeuroCare

What is SPARK NeuroCare? Led by MS Queensland, SPARK NeuroCare is a not-for-profit initiative bringing together the knowledge and expertise of six care providers – Epilepsy Queensland, Huntington’s Queensland, Motor Neurone Disease Association of Queensland, MND and Me Foundation, MS Queensland and Youngcare. SPARK NeuroCare specialises in working with people with progressive neurological diseases like Multiple Sclerosis, Epilepsy, Huntington’s Disease, Motor Neurone Disease and Parkinson’s, as well as Stroke and Acquired Brain Injury. We have the specialist knowledge and health networks to get you the support and services you need – in your local area.

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Specialising in progressive neurological diseases

Why choose SPARK NeuroCare? • We’re experts in working with people with progressive neurological diseases • We’ve got the knowledge and the networks to help you navigate the NDIS • We’re independent and unbiased – and are a registered NDIS provider • We have local knowledge and established health networks your region – to connect you with community care solutions that are relevant and tailored to your needs • We empower you to decide what support you want and when you want it • We listen, we support your goals, and we help you stay in control of the entire process How does SPARK NeuroCare work? 1. Contact SPARK NeuroCare on 1800 875 244 or info@sparkneurocare.com.au

What SPARK NeuroCare can help you with: • Understanding and applying for the NDIS & 2. We’ll make you an appointment with our My Aged Care local Service Coordinator in your area • NDIS Support Coordination to help you get 3. We can visit you with your family or carers to the best out of your NDIS plan discuss your needs • Connecting you with NDIS Plan Management Services 4. We’ll create a personalised plan of information and resources to help manage • Advice and information to help you get the your needs and symptoms best out of life • Connections to physiotherapy, exercise 5. We can help you apply for or navigate the NDIS programs, occupational therapy & other 6. We can organise referrals to other allied health health services services (including physiotherapy, occupational • Links to aids and equipment suppliers therapy, speech therapy and more) MS life • Wellness and educational programs 7. We’ll stay in touch and keep up to date with • Help navigating service provider MS lifechanges in your needs and circumstances relationships

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TO MAKE AN APPOINTMENT OR FIND OUT MORE...

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1800 875 244 info@sparkneurocare.com.au sparkneurocare.com.au @SparkNeuroCare

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STORY SPA R K N EU R O C A R E CUS TO M ER S TO RY

Penelope McNally

Penelope (Penel) was diagnosed with MS in 2001, shortly after turning forty. Like many people newly diagnosed with a progressive neurological disease, her mind immediately went to a scary imagined future of life in a wheelchair. Following her diagnosis, Penel lost both her mother and her husband. It was an incredibly difficult time that she says she wouldn’t have survived without the close network of friends that surround her. These friendships are the reason Penel stayed in North Queensland, despite her family living in Victoria. She also finds the weather, while much hotter in Townsville, maintains a more even temperature that allows her to manage her MS symptoms better. Despite her new diagnosis hanging over her, Penel wanted to still be living her best life. She continued to work as a Registered Nurse, reducing her shifts and moving to night shift where things were typically quieter and calmer. She continued working for another 13 years, and only ceased when balance and movement became too much of an issue. Penel broke her foot in a fall and spent four months in a moon boot and it was at that point that she knew work was no longer an option for her.

MS support groups as well as the wider MS community in Townsville. Penel is a strong advocate for people taking responsibility for their own health and is passionate about maintaining an active lifestyle – “I already have MS, I definitely don’t need any other health problems!” she says. With this in mind, she created the North Queensland People with MS 10,000 steps group, a walking group that meets regularly at a local shopping centre but also promotes any form of movement and activity, including chair yoga. Penel practices what she preaches when it comes to keeping active. As well as the walking group she also regularly goes to exercise physio and yoga and recently competed in the Townsville Running Festival. With the help of a good friend, and her wheelie walker, she completed the 2.5km fun run, and was able to walk across the finish line.’ While Penel lives by herself and is still able to drive, she is quick to point out that it is the great network of support around her that helps her maintain her independence. She admits that moving from a walking stick to the aid of a wheelie walker was tough to get her head around at first, but quickly realised that the walker actually gave her more freedom and allowed her to do more of what she loves.

Giving up work didn’t slow her down though. Penel acts as the Townsville representative on MS life the Services Management Advisory Committee (SMAC), liaising between MS Queensland and PENEL fe (BOTTOM LEFT) WITH people with MS, their families and carers. MS li SOME OF HER SUPPORT Through this role she works with two local GROUP FRIENDS.

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Penel is a strong advocate forMS people taking responsibility for their life own health and is passionate about maintaining an active lifestyle

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SERVICES

SP OT L I G H T O N REG I O N A L

Queensland

FAR NORTH QLD

We are very much aware of the importance of access and equity for all of those living with MS across our state, that is why we continue to explore ways we can better service our customers living in regional Queensland.

NORTH QLD

MS Queensland’s footprint has continued to grow across the state as we prioritise our regional communities. Some of the growth we saw in 2017/18 included:

CENTRAL QLD FRASER COAST & WIDE BAY BURNETT

SUNSHINE COAST

BRISBANE NORTH IPSWICH

OFFICE

SERVICE COORD

MS FUNDRAISING EVENT

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NEURO HOME ACCOM

MS NURSE CLINIC

BRISBANE SOUTH & SCENIC RIM

NEURO NEURO ASSIST WELLBEING INFO LINE INFO

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BAYSIDE & LOGAN SOUTH-WEST QLD

GOLD COAST & NORTHERN NSW

• The opening of new offices in Bundaberg and Toowoomba. • New Service Coordinators in Cairns, Bundaberg, as well as new Service Coordinators dedicated to our Motor Neurone Disease customers. • The welcoming of NeuroPartners to deliver Neurological Physiotherapy to customers in regions that MS Queensland doesn’t currently service • Expanding our webinar offering to our MS Community webinar to allow more of you to connect with MS Queensland. • NDIS Information Sessions across the state where the NDIS is rolling-out. • The construction of our first Project Dignity 120 apartments in Springfield. We continue to prioritise regional Queensland for both MS Queensland services as well as our Project Dignity 120 initiative which aims to build specialist disability accommodation from Coolangatta to Cairns. We look forward to announcing more locations throughout the 2018/19! Check out what’s available across Queensland in our Map!

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HEALTH WHY D O YO U NEED

NeuroPhysio ? Physiotherapy can improve your independence, allow you to take part in the community and improve your overall wellbeing. MS Queensland’s NeuroPhysio team can help you or the person you care for to manage pain and chronic conditions, do daily tasks, sports and hobbies and manage daily activities like getting out of bed and moving around your home.

What makes MS Queensland’s neurological physiotherapy service different to your local physiotherapist? Some chronic illnesses like MS and progressive neurological diseases are complex and benefit from a physiotherapist that has been trained in a dedicated area like neurological physiotherapy. Damage to the nervous system caused by conditions like MS, Parkinson’s Disease, Huntington’s Disease, MND, stroke and acquired brain injury can produce a range of symptoms that affect each individual in a different way. These symptoms can affect your quality of movement and make it difficult to perform simple daily activities such as walking. Our NeuroPhysio team look at your goals and work with you to create a management plan that aims to improve your physical independence and quality of life. The team help you to maximise your ability to physically participate in daily life. MS Our neurological physiotherapists are trained and experienced in identifying and treating MS symptoms relating to damage to the nervous

Through our NeuroPartner initiative we’ve also welcomed CQ Physio Group and Active Physio Mackay to deliver neurological physiotherapy to customers in the Mackay and central Queensland regions. These physiotherapy providers have undergone our rigorous approval process and MS specific training to deliver neurological physiotherapy. If you feel like you need help to move better or manage your disability, then get in touch with the team.

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NeuroPhysio Update Our NeuroPhysio footprint has continued to expand over the past 12 months.

system. Our team attend courses that are specific to neurological physiotherapy and participate in a philosophy of care called neuro-rehabilitation which emphasises patient education and selfmanagement.

We’ve opened our NeuroPhysio gym at the ‘Progressive Neurological Disease Wellbeing Centre’ in Toowoomba and new NeuroPartners have been approved to deliver neurological physiotherapy services.

TO MAKE AN APPOINTMENT OR FIND OUT MORE... 1800 177 591 info@msqld.org.au msqld.org.au

We’re very excited to welcome our latest NeuroPartner, CQ Physio Group, who started delivering neurological physiotherapy to customers in the central Queensland region from April 2018. They join our other NeuroPartner Active Physiotherapy Mackay, delivering neurological physiotherapy services. We hope this new addition is just one of many more that will allow us to make this service available to communities across Queensland with the peace of mind of knowing they have undergone our rigorous approval process and MS specific training. On a sadder note, we bid farewell to physiotherapist Joy Constantine who has been with MS Queensland for more than 17 years. Joy helped endless customers, running our Chermside clinic and providing outreach to the Sunshine Coast, Redcliffe and other areas across Queensland. Joy has touched many lives, but made the decision to join her husband in the world of freedom and family time and we’re sure she’s enjoying her lifestyle change. We look forward to continuing to support our customers throughout 2018 whether it’s through preplanning conversations and reports for the NDIS, neurological physiotherapy assessment and inidividualised treatment, an exercise group, clinic or many of the other services our team offers.

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Don’t hesitate to get in touch if you would like more information on our NeuroPhysio MS services fe or have any questions at all.

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DID YOU KNOW MSYOU fe MAKE APPOINTMENTS WITH OUR liCAN NEUROPHYSIO TEAM BY CALLING THE NEUROASSIST NUMBER? NO NEED TO SEE A SERVICE COORDINATOR FIRST, JUST CALL 1800 177 591.

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MS LIFE

VOLUME I, 2018

circulating. Regardless of which treatment option you choose, all therapies approved in Australia have demonstrated a reduction in relapse rates and MRI activity meaning they have reduced the inflammatory side of the disease. However, one size doesn’t fit all, and we can’t compare these therapies directly against each other.

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What’s making MS News? CHANGES TO THE DIAGNOSTIC CRITERIA FOR MS In 2001 a revision as to how Neurologists diagnosed Multiple Sclerosis was undertaken by a team of international MS experts led by Professor Ian McDonald. This became known as the ‘McDonald Criteria’. This was the first revision of how a diagnosis is made since 1983, when we had the ‘Poser Criteria’. Changing how a (or any) disease is diagnosed is not taken lightly, and the McDonald Criteria 2001 was based on the advances in both clinical knowledge and diagnostic tools, such as the advancement in MRI technology, and understanding of pathology – such as Cerebrospinal Fluid (CSF). It had some minor revisions undertaken in both 2005 and again in 2010/11. The most recent revision published late last year is, not surprisingly, known as the 2017 McDonald Criteria for the Diagnosis of Multiple Sclerosis.

These revisions to the criteria have been made so that the diagnosis of MS (or not MS) can be made both as quickly and as accurately as possible. These revisions do not undo previous criteria – if you met the 2001 criteria you will meet the 2010 and 2017 criteria. However, someone who did NOT meet the 2010 criteria, may now meet the 2017 criteria allowing the confirmation of diagnosis. This will not be the last revision. As our knowledge grows and as technology improves clinicians will always look at ways to make a diagnosis quicker and more accurate.

IMMUNOTHERAPY OPTIONS FOR MS

Over the past 20 years, treatment options have expanded significantly going from no options to multiple disease modifying treatments (DMT) that can reduce relapse rates and mitigate disability. With ‘choice’ also comes confusion about which one for me? How they are given (injection, tablet or infusion), how often and The absolute core of what we are diagnosing how they work, are all considerations for both has not changed. MS is (still) a disease of the you and your Neurologist. Immunotherapy is central nervous system requiring evidence of the broad term that encompasses any drug damage to the brain and/or spinal cord and/ that changes the way your immune system or optic nerves. The key requirement for a responds to the disease that you have. An diagnosis of MS is evidence of damage to the immunomodulating therapy will alter or central nervous system that is disseminated change immune functions without destroying in time and space. This means showing that MS li feactual immune cell itself where as an the damage has occurred at different times, at least immunosuppressing therapy will block, bind or 30 days apart (dissemination in time - DIT) and MS li killfe immune cells, meaning it works by reducing to different parts of the central nervous system (dissemination in space - DIS). This distinguishes the number of those immune cells that are MS from other neurological conditions. MS life 25

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With more treatment options than ever, making the right choice for you can be a difficult one especially because each person’s journey with MS is unique. A challenge for all of us is that we are not at a point where we can say that a particular treatment will work for a particular person nor can we compare one treatment to another in terms of efficacy. This makes your choice of treatment a personal one and is largely reliant on your confidence as to what you are comfortable doing along with your Neurologist’s advice. Unlike many other chronic conditions, with the current range of therapy options for Relapsing MS you and your Neurologist have the opportunity to share in the decision-making about treatments that may be best for you.

After having some of these therapies available for 20 years, there is growing evidence that these therapies are delaying or preventing the progression of the disease. The basis of DMTs for MS is that we are trying to achieve No Evidence of Disease Activity (NEDA) and the current baseline that we are using is known as ‘NEDA-3’ (a criteria of three ways to monitor your disease) which means: • No clinical relapses/no new episodes • No new MRI lesions • No increase in your disability score (disability score is a number assigned to your level of function) As our MRI technology improves, we may start to move to ‘NEDA-4’ which adds a fourth criterion of ‘no increase in brain atrophy’. If technology allows us to measure this, it will allow a more comprehensive assessment of disease activity and worsening and structural damage.

THERAPY Aubagio Gilenya Glatiramer Acetate: Copaxone 20 & 40 Interferon Beta: Avonex, Betaferon, Plegridy, Rebif Tecfidera (Dimethyl Fumarate) Tysabri (Natalizumab)

ADMINISTERED Oral medication Oral medication Injection

TGA APPROVED Yes for RRMS Yes for RRMS Yes for RRMS

PBS APPROVED Yes for RRMS Yes for RRMS Yes for RRMS

Injection

Yes for RRMS

Yes for RRMS

Oral medication

Yes for RRMS

Yes for RRMS

Infusion

Yes for RRMS

Yes for RRMS

Lematrada (Alemtuzumab) Ocrevus (Ocrelizumab)

Infusion

Yes for RRMS

Yes for RRMS

Infusion

Yes – for both RRMS & PPMS

Yes – only for RRMS

Mavenclad (Cladribine)

Oral medication

Yes for RRMS

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(pending further consideration for PPMS) No – declined for PBS listing in November 2017 & April 2018 (further consideration for PBS in July 2018).

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EDUCATION What’s making MS News cont. When considering your choice of therapy there are a number of factors to consider and there are different considerations for your Neurologist and for you.

Medical Considerations... • Burden of disease • Enhancing lesions • Disease course • Number of relapses Patient Considerations... • Lifestyle • Expectations • Capabilities • Support system

Immunotherapy: the overall treatment of disease by inducing, enhancing, or suppressing an immune response. Immunomodulating: having the ability to alter or regulate on or more immune functions. Immunosuppressing: involves an act that reduces the activation or efficacy of the immune system.

VOLUME I, 2018

NEUROWELLBEING

Workshops + Webinars Our NeuroWellbeing workshops, programs and webinars are designed specifically to suit you. Delivered by neurological specialists, they’re a great way to learn about many aspects of MS and other progressive neurological diseases. The education programs are delivered across a range of locations with some face-to-face and others delivered online. There’s a range of topics to suit what you’re interested in, or you could attend them all!

PROGRAMS COMING UP IN 2018 NDIS Information Sessions These free sessions are delivered face-to-face across regions where the NDIS is about to roll-out or has recently rolled-out. If you’re region hasn’t received the NDIS yet, keep an eye out for information sessions in the six months prior to its arrival. The NDIS Information Sessions help you understand what the NDIS is, what it means for you and how you can access it. If the NDIS has already rolled-out in your region or you can’t make it to one of our information sessions, simply get in touch with our friendly NeuroAssist Team. NeuroPhysio Information Sessions These free sessions are delivered face-to-face across regions where MS Queensland or one of our trusted NeuroPartners delivers our Neurological Physiotherapy services. We explain how Neurological Physiotherapy is different to mainstream physiotherapy. We talk through the role of our NeuroPhysio services in the management of MS and other progressive neurological diseases and how our NeuroPhysio team can help you.

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li Programs Education Our education programs and workshops are focused MSMSli fe on enhancing and supporting self-management and

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wellbeing. Our goal is to link you with reliable information and support to equip you with skills to reduce the impact your disease has on your life. Some of the programs and workshops we offer include: • Mindfulness for MS • Newly diagnosed or new to MS • Chronic pain self-management • Fatigue and sleep • Taking steps to better manage MS • Living well with MS • How to get the best out of your brain • READY Resilience

MS Webinars Throughout the year, our MS Specialist Nurse Tim O’Maley hosts a range of educational NeuroWellbeing webinars. Topics include: • • • • • • • • • •

Immunotherapy Options for MS Exercise and Physical Health Brain Health Diet and Nutrition Medicinal Cannabis MS Scans and Tests Sexual Activity with MS Understanding MS Fatigue Understanding MS Bladders and Bowels Thinking and Memory: MS Cognition

We generally record our webinars and make them available online to watch in your own time, however, this is dependent on the sensitivity of the topic and any privacy concerns that may arise during the session.

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TO CHECK TO SEE WHAT WEBINARS AND WORKSHOPS ARE COMING UP MS THROUGHOUT THE YEAR VISIT THE NEUROWELLBEING PAGE ON OUR WEBSITE!

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FOR MORE INFORMATION OR TO BOOK A WORKSHOP, CONTACT OUR NEUROASSIST TEAM... 1800 177 591 info@msqld.org.au msqld.org.au

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VOLUME I, 2018

LIVING

OUR HOUSING

Reflections

FRO M G R A NS TO N LO D G E TO SPR I N G FIEL D A PA RT M EN TS

MS Queensland’s vision to provide much needed accommodation for people living with MS and other progressive neurological diseases has been there since the very early days of our inception.

Granston Lodge – where it all began Just six years after the establishment of MS Queensland, we started the process of acquiring property with the vision of creating an MS Centre with accommodation. We purchased our first property at 179-181 Maldon Street, Dutton Park in 1964 and our second soon followed with the property next door at 177 Maldon Street purchased in 1967. This is what would soon become Granston Lodge, named in Memory of Graham Neville Johnston, a young man with MS who had the vision of a Queensland MS Society and took the initiative to advertise for interested people to form MS Queensland.

era and the care model that existed in the 1960s – mid 80s. Granston Lodge later modernised, reducing its number of beds and becoming high needs disability supported accommodation opposed to a nursing home. Since then Granston Lodge has continued as a home and provided much needed respite to many.

We celebrated the official opening of Granston Lodge in 1974 and this year we celebrate the history of Granston Lodge as we bid it farewell and move into a new era of housing. We recognise the invaluable role Granston Lodge has played in our history and the countless people who have lived, sought respite In 1973 the foundations of Granston and relied on Granston Lodge as an Lodge are laid and just one year later important source of care for their family we accept our first residents on 3 June members. We commemorate Granston 1974. Granston Lodge started as a 40 bed Lodge and look to the future with our ‘Multiple Sclerosis Nursing Home’ andMS li fe Dignity 120 initiative that starts Project expanded to 60 beds in 1981 at a cost with our Granston Lodge residents of $250,000. The size and operation of moving MS li fe into their new homes at the Granston Lodge was consistent with the ‘Springfield Apartments’.

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McKinnon House – a home away from home In 1974 MS Queensland purchased a home at Runaway Bay for $35,000 as a respite/holiday home for MS Queensland customers and their families. The home was soon named McKinnon House, in memory of a 20-year-old man McKinnon Chuffey who drowned in a Weir in January 1974. Prior to his death, McKinnon spent most of his free time assisting physically handicapped families. McKinnon House has been well-known amongst MS Queensland customers as a peaceful getaway but it was also well-known by many as the house used as the set for the 1964-1967 television series ‘Flipper’. In 1982, MS Queensland undertook major renovations to McKinnon house which added extra toilets and bathrooms as well as a weatherproof ramp, special barbeque area, jetty and swimming pool. McKinnon House now truly looked like a holiday get-away that anyone would be envious of. McKinnon House again transformed with major renovations undertaken in 2000. The new-look McKinnon House was heralded Queensland’s most accessible holiday facility for people with a disability when it was unveiled in 2001.

Dutton Park Transitional Flats – an independent alternative In 1978, MS Queensland’s housing commitment expanded with the purchase of the first three independent accommodation flats. The flats on Denbigh Street were offered to MS Queensland customers as an alternative to nursing home care. These flats were made possible with the support of the community. The first flat is completely renovated by the Rotary Club of Geelong in 1978, and in 1981, the Lions Club of Underwood completely modified and renovated the second flat.

Sadly in 2016, MS Queensland prepared to In 2012, MS Queensland was provided a grant farewell McKinnon house after more than 40 by the Queensland Government and Jupiters years and hosting over 1,500 holidays. After Casino Community Benefit Fund of $43,580 significant consideration and consultation to undertake repairs to the Transitional Flats MS Queensland made the decision to place including a new driveway, fresh paint and McKinnon House on the market and the property improvements to the railings and other facades. was sold. The sale of McKinnon House allowed MS life The Transitional Flats still exist today providing MS Queensland to start its journey into a new an independent housing option for people living era in housing by reinvesting the money fromMS the li fe with MS and other progressive neurological sale. It also allowed for expanded holiday respite options across Queensland, offering more choice. diseases.

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VOLUME I, 2018

LIVING

The Annerley Apartments – a new era of supported accommodation In early 2009 MS Queensland received council approval to commence the development of our ‘Life at Annerley’ Townhouses with plans for the construction to be complete by the end of the year. In 2010 the Annerley Apartments were officially opened. The apartments are an independent living model with four modern townhouses designed to cater for people living with MS who require 24-hour support. This was a milestone in MS Queensland’s focus on age-appropriate disability housing.

The Albany Creek Apartments were opened in 2017 provide age-appropriate housing for eight people living with MS or other progressive neurological diseases with high care needs. They also provide an additional three social housing apartments.

Spectrum Apartments Lutwyche – accessible independent living In 2016, MS Queensland announced plans to begin construction on the Spectrum Apartments Lutwyche. The development was a collaboration between Brisbane Housing Corporation (BHC) Creating Livable Communities and MS Queensland. The development introduced four independent living apartments to MS Queensland’s housing offering. It also includes two commercial spaces that MS Queensland can lease or operate from to generate further income to support people living with MS and other progressive neurological diseases.

The Albany Creek Apartments – a collaboration for people living with progressive neurological diseases In 2016, we took some significant steps in our accommodation strategy with the announcement of plans to build the Albany Creek Apartments in collaboration with the In 2017, we officially opened the Spectrum Queensland Government and Youngcare. MS Apartments Lutwyche. The apartments went Queensland was also confirmed as the service MS li onfe to win the ‘Urban Development Institute provider. The collaborative development of Australia’s Excellence in Affordable Housing was focused on providing supported MS fe li Award’ for Queensland. accommodation for people who were living in inappropriate housing.

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The Springfield Apartments – the future of housing for MS Queensland In 2016, MS Queensland purchased the first block of land for the Project Dignity 120 initiative. This was made possible with the sale of McKinnon House in the same year. The land at Springfield will soon be the first location for Project Dignity 120 which aims to build 120 new high need, independent living apartments across Queensland to bridge a critical gap in the availability of high need housing with quality support services. Springfield is the first of our 10 locations under Project Dignity 120. In 2017, the foundations were laid and 18 specialist disability accommodation units came to life at 14 Wellness Way. By September 2017, the top floor was constructed and a ‘topping out’ ceremony was held on the site with supporters and future residents attending to commemorate the special occasion. 2018 sees the final stages of the Springfield Apartments with residents set to commenceMS life moving into their new homes in late May (more about the Springfield Apartments and Project MS life Dignity 120 on pages 31–33).

Home FOR MORE INFORMATION ON OUR NEUROHOME SERVICE, CONTACT OUR NEUROASSIST TEAM... 1800 177 591 info@msqld.org.au

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1950’s & 60’s

1970’s

IN 1957

IN 1971

Young MS patient Graham Neville Johnston advertises a meeting to form a Queensland MS Society. Chaired by fellow patient Col. W. J. Fletcher on 14 December, the meeting appoints a committee.

The Society’s first commercial fundraising venture, the Valley Thrift Shop, 278 Wickham Street, Fortitude Valley opens.

IN 1958 The Society is constituted and Mr. Bill Mathers is appointed as its first President.

IN 1964 The Dutton Park site is purchased, with the vision of creating a MS Centre.

IN 1974

IN 1972 The first full time Executive Director, Trevor Hinwood is appointed.

IN 1974

A home is purchased on the Gold Coast to provide respite accommodation for families living with MS (later named McKinnon House).

Granston Lodge, a 32-person care facility at Dutton Park for people living with MS is opened.

IN 1976

IN 1977

MS Queensland supports the first MS scholarship for ‘Research in MS by Trainee Medical Practitioners’ at the Medical Faculty of the University of Queensland.

A Multi-Diagnostic Rehabilitation Unit is opened in Townsville and the first MS statewide Art Union is launched.

1980’s

IN 1974

IN 1981

The Society operates on a full time professional basis and 173 Annerley Road and 11 Denbigh Street are purchased.

Granston Lodge expands from 40 to 60 beds at a cost of $250,000.

IN 1975 Gina Lollobrigida opens the Day Activity Centre at Granston Lodge. The Rehabilitation Unit also opens.

IN 1978 The first three independent accommodation flats are purchased in Denbigh Street as an alternative to nursing home care.

IN 1983 Australia’s Golden Girl of sport Betty Cuthbert (living with MS) attends a special Sportsmen’s Auction in Brisbane to raise funds for MS.

IN 1982 A Bundaberg activity therapy centre is officially opened.

IN 1984 Executive Director Trevor Hinwood retires after 12 years of service and Trevor Farrell is appointed as MS Queensland’s second Executive Director/CEO.

IN 1985

IN 1988

A refurbished house on the corner of Gladstone Road and Maldon Street is opened to accommodate MS Queensland’s administration.

MS Queensland is one of the first organisations in Australia to start a luxury car lottery fundraising program called MS Limited Edition.

1990’s IN 1990 The MS Readathon is launched in the International Year of Literacy.

IN 1993 A physiotherapy unit is established on the Gold Coast.

2000’s IN 2005

IN 2010

IN 2011

IN 2011

The MS Moonlight Walk is reintroduced to Brisbane.

MS Queensland opens Annerley Apartments, designed to cater for eight people living with MS who require 24 hour support.

Executive Director/ CEO Trevor Farrell retires after 27 years of service and Lincoln Hopper is appointed as MS Queensland’s third CEO.

MS Swimathons are added to the MS Queensland suite of fundraising events and have raised over $1 million since their inception.

IN 2012

IN 2012

IN 2013

The Governor of Queensland Penelope Wensley officially opens the MS Queensland North and Far North Queensland office in Townsville.

In collaboration with MS Research Australia, MS Queensland financially supports the PREVANZ Vitamin D Prevention Trial.

IN 2014

IN 2014

IN 2016

Together with MS Research Australia, MS Queensland financially supports the Adoptive Immunotherapy for Progressive MS Phase 1 Clinical Trial.

MS Queensland opens a regional office in Rockhampton to serve people living with MS in the region.

MS Queensland purchases a block of land in Springfield – the first of 10 locations to be developed under Project Dignity 120.

IN 2006

IN 1994

IN 1994

The InfoLine 1800 phone service is introduced to provide information and support to people living with MS.

MS Queensland holds the first sporting fundraiser, the MS Brissie to the Bay bike ride, with 1,000 cyclists.

IN 1995

IN 1998

IN 2009

MS Queensland establishes Australia’s first MS Clinic at the Royal Brisbane and Women’s Hospital.

The MS Moon Walk is introduced with almost 1,000 participants raising close to $22,000.

MS Queensland supports the global launch of World MS Day along with 67 countries.

IN 1999

IN 1999

MS Queensland appoints its first full-time Regional Service Coordinators.

MS Life magazine launches to more than 10,000 donors.

2010 now

MS Queensland begins to focus on neurological physiotherapy intervention for people living with MS.

MS Queensland kicksoff the NeuroCare Network - a group of 11 not for profits - to collectively support people living with a progressive neurological disease.

IN 2016

IN 2016

IN 2017

IN 2017

Led by MS Queensland, SPARK NeuroCare (a service initiative of the collaborative NeuroCare Network) opens in Townsville.

We introduce NeuroPartner, an alliance between MS Queensland and selected health providers across Queensland.

The Albany Creek Apartments open, providing ageappropriate housing for 8 people with high care needs.

IN 2017

IN 2017

IN 2017

IN 2017

MS Queensland introduces a suite of Neuro service brands to appeal to a broader audience of progressive neurological disease.

In partnership with The MND and Me Foundation, MS Queensland introduces dedicated MND Service Coordination.

IN 2017

IN 2017

Team Cure MS is launched as MS Queensland’s new community fundraising program.

MS Queensland opens a ‘Progressive Neurological Disease Wellbeing Centre’ in Toowoomba.

MS Queensland raises $1.7m to support the next stages of the Adoptive Immunotherapy for Progressive MS Clinical trial.

MS Queensland opens four units in Spectrum Apartments (Lutwyche) and eight units in the new Albany Creek Apartments.

IN 2018 MS Queensland opens Springfield Apartments - 18 units of muchneeded housing for people who require 24 hour support.

Spectrum Apartments (Lutwyche) win the Urban Development Institute of Australia’s (NDIA) Excellence in Affordable Housing Award for Queensland.

IN 2018 MS Queensland celebrates its 60th birthday!


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For the past 60 years, MS Queensland has provided care and support...

But we’re also looking forward, with hope, to a world that is one day free from MS and its devastating impact. Top 3 goals of the month

As research into the cause of MS continues, and new treatments to stop the progression of MS are introduced, it’s pertinent to reflect on our past.

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We are the first choice for people living with MS and other chronic, progressive neurological diseases because of our experience, commitment, knowledge and services.

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Accommodation Update It’s a very exciting time to be the Accommodation Services Manager at MS Queensland. In the six years I’ve been here, we’ve come so far. From our humble Granston Lodge at Dutton Park, to the Annerley Apartments, then the Albany Creek Apartments and now the impressive Springfield Apartments!

“We look forward to ducking downstairs to have breakfast or coffee without having to worry about narrow and bumpy foot paths. The paths are so wide and smooth. They’re perfect for getting around independently. I can go all the way to the shops on my own.”

It’s been an extremely busy time for us, as we support our Granston Lodge residents in the preparation for their move to Springfield. We’ve been doing regular trips out to Springfield to get familiar with our new surrounds such as the local shopping centre, cafes and pubs. Everyone is beyond excited for what the future holds, albeit a little overwhelming at the same time.

“I look forward to cooking for myself again. I’m going to buy a George Foreman grill and cook myself two-minute steaks whenever I want.”

Who is SPARK NeuroCare?

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LIKE MS, PARKINSON’S, MOTOR NEURONE DISEASE, HUNTINGTON’S DISEASE OR STROKE? SPARK NeuroCare are here to help – call us 1800 875 244.

We’ve been talking about this with the residents of Granston Lodge for a long time now and each of them are looking forward to different things but the common theme is the independence and privacy that the Springfield Apartments bring. I’ve included a few quotes below from some residents about what they’re most looking forward to: “I can’t wait to have a proper front door that people have to knock on to enter. I get to choose if I let them in or not. I’m going to get a big bell for my door that people have to ring.”

DO YOU OR A LOVED ONE HAVE A PROGRESSIVE NEUROLOGICAL DISEASE?

MS life

SPARK NeuroCare is a not‑for‑profit organisation bringing together the knowledge and expertise of six care providers – Epilepsy Queensland, Huntington’s Queensland, Motor Neurone Disease Association of Queensland, MND and Me Foundation, MS Queensland and Youngcare.

SPARK NeuroCare specialises in working with people with progressive neurological diseases like Multiple Sclerosis, Epilepsy, Huntington’s Disease, Motor Neurone Disease and Parkinson’s, as well as Stroke and Acquired Brain Injury. We have the specialist knowledge and health networks to get you the support and services you need – in your local area right across Queensland.


MS LIFE

VOLUME I, 2018

LIVING

RE VOLUTIONERY HOUSING

Project Dignity 120 Meet the people whose lives are being changed by Project Dignity 120. Terran Hassel and Ingrid Blake will soon call our new Springfield Apartments home.

Terran has been living with MS for more than a decade and life has changed drastically since the early days of his diagnosis. In the early days Terran tried to push past the symptoms, so when he couldn’t walk – he would crawl, until he could no longer crawl and found himself in a wheelchair. The progression of his MS was quite fast and he reached a point where he couldn’t leave his flat so he had a screen door fitted to let the outside world in and get fresh air. Ultimately, Terran found that there’s only so much you can manage by yourself, even with the help of friendly neighbours. At 38, Terran moved into MS Queensland’s Granston Lodge and he said it immediately felt good to have people around – like a family.

MS

Terran’s MS means he can no longer do much for himself. Terran loves art and he used to paint but he can longer move his arms to pick up a paintbrush, instead he loves looking at art. Terran will soon move into his new Project Dignity 120 apartment in Springfield, where he can display his art lifein his own home as well as be closer to his mum making her long journey from the Toowoomba region manageable.

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Ingrid was diagnosed with MS at just 26.

Geoff it will remove the frustration he feels not being able to take care of his wife and watching her live a life defined by her disease.

Within three years her symptoms had made her unemployable. Her husband Geoff, tried to hold onto normal life for them both, he worked hard to keep them together. Fast forward many years, and Ingrid finds herself living in a shared living facility after Geoff has surgery and can no longer care for Ingrid.

“It will take so much pressure off. I can set her up for life; we don’t have to worry about the future,” says Geoff.

“Initially, because I had my operation and was still on the Gold Coast, when Ingrid had to move up here [Brisbane] I couldn’t bath her. I couldn’t even lift a plate. I used to come up here and get a stretcher bed so I could stay up here in the room with her,” says Geoff. Geoff and Ingrid can no longer be together in their own home and shared living arrangements don’t make it ideal for a couple who want to relax in the privacy of their own home. However, this is all set to change when Ingrid becomes one of the first residents of the Project Dignity 120 Springfield Apartments. MS life Ingrid is looking forward to the small things like being able to wheel her chair right up to theMS kitchen bench to make a cup of tea. Whilst for

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FOLLOW OUR RESIDENTS’ JOURNEYS AS THEY MOVE INTO THEIR NEW HOMES... @ProjectDignity120 projectdignity120.com.au

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1868

RESEARCH

Jean-Martin Charcot a professor at the University of Paris carefully examines a woman with a tremor he has never seen before. He notes her other neurological problems including slurred speech and abnormal eye movements and compares them to other patients he has seen. When the woman passes away, Professor Charcot examines her brain and finds characteristic scars or “plaques” of MS. This is the first time MS was described with Professor Charcot defining it as “la sclerose en plaques”. Professor Charcot goes on to be known as the “Father of Neurology” with his definition of the disease still recognised by researchers today.

H O W FA R W E H AV E CO M E W I T H

MS Research There is a global effort with the MS research community gathering regularly to collaborate and share new research developments. Together this diverse, global community is working tirelessly to drive progress in MS research and bring us closer to ending MS. We would like to acknowledge all the member organisations that make up the Multiple Sclerosis International Federation and the International Progressive MS alliance who are working hard to advance MS research internationally.

1878

Myelin is discovered by Dr. Louis Ranvier and is studied intensively under the microscope.

1925

The first electrical recording of nerve transmission by Lord Edgar Douglas Adrian establishes the techniques needed to study the activity of the nerves. Ultimately six Nobel Prizes are awarded for these studies and the resulting knowledge included clarification of the role of myelin in nerve conduction and a realisation that demyelinated nerves cannot transmit impulses efficiently.

1966 The link between MS and the immune system is now understood with a theory being put forward that the immune system attacks the myelin coating of the nerves and MS acts like an autoimmune disease.

1969 The first study to test if a therapy could be developed to improve MS symptoms was conducted. The study involved a group of patients who were having exacerbations or acute MS attacks being given a hormone which provided an anti-inflammatory and immune-suppressing effect.

1984

1985

Research grants by MS Queensland and the National Health and Medical Research Centre total $800,000. More than triple MS the funds available when MS Queensland began financing research in 1979.

The Australian Government announces approval for the introduction of MRI scanners in Australia. Each scanner will life cost over $2 million and will be installed in one major hospital in each state.

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1870s

MS was first recognised as a disease by Dr. Walter Moxen and Dr. Edward Seguin who observed a range of neurological symptoms in many people. They found that MS affected females more often than males. The doctors also determined that MS wasn’t strictly genetic. Parents didn’t necessarily pass the disease down to their children.

1930s

1935

Dr. Thomas Rivers proved through experiments with lab animals that MS was not a viral disease of the immune system.

There is a boom in medical breakthroughs that help the medical community study the progression and symptoms of MS. It was now possible to view cells under a microscope and detect abnormalities in spinal cord fluid and record electrical activity of the nerves.

1976 MS Queensland funds the first scholarship for research in MS by trainee medical practitioners at the medical faculty of the University of Queensland.

1979 MS Queensland begins financing MS research.

1981 The first (Magnetic Resonance Imaging) MRI scans of people with MS enable doctors to see the complex effects of MS on the brain.

1988 A research team at the University of Queensland’s Department of Medicine headed by Professor Michael Pender are the first in the world to use MS alife model to see what happens when damage occurs and drug therapies are applied.

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1988

1993

1993

Sequential MRI scans change the concept of MS by showing that it is a constant, ongoing disease even though relapses with symptoms may appear only sporadically.

The first ever diseasemodifying treatment for relapsing MS, designed to reduce relapses and slow disease progression is approved.

We fund the ‘Elizabeth Albiez Research Fellowship’, set up under the will of the late Mrs. Clare Albiez to fund research into MS, in memory of her only daughter who passed away at the age of 31. Dr. Judith Greer is one of the recipients of the Fellowship and investigates T cell reactivity to myelin proteolipid protein in MS at the University of Queensland. Judith Greer has dedicated her career to MS research and continues as an MS researcher today.

1995

The first transplantation of hematopoietic stem cells (HSCs) was suggested as a treatment for MS.

1997

HSCT is performed for the first time on 15 patients with a progressive form of MS in the United States.

2010

2011

The first oral disease modifying treatment is introduced.

MS Queensland makes the commitment to continually increase our financial contribution to MS Research Australia.

MS Queensland and the Queensland University of Technology receive funding for a research project which will assess the needs of carers of people living with MS.

MS Research Australia sets up the Autologous Hematopoietic Stem Cell Transplantation (AHSCT) Registry. This clinical registry collects data on treatment effects, patient characteristics and outcomes, and long-term prognosis of patients following AHSCT.

MS Queensland publishes the first national collaborative research article about Autologous Haematopoietic Stem Cell Transplantation (AHSCT) in MS Life. The article MS isli fe a collaboration between MS Queensland, MS Australia and MS Research Australia

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MS Research Australia is established to fund MS research across Australia.

Betaferon is listed on the Pharmaceutical Benefits Scheme (PBS) in Australia after four previous failures. This signals a new era in affordable treatment and management of relapsing remitting MS.

2009

The first Mesenchymal Stem Cell Treatment trial commences.

2012

2014

With the support of MS Queensland, MS Research Australia establishes the vitamin D MS Prevention Trial (PrevANZ), the largest of its type in the world.

Phase 1 of the Adoptive Immunotherapy for Progressive MS Clinical Trial operating out of the MS Clinic at the Royal Brisbane and Women’s Hospital commences.

2017 MS Queensland raises $1.7 million in private funding to support the next stages of the Adoptive Immunotherapy for Progressive MS Clinical Trial.

2004

Phase 1 results from the Adoptive Immunotherapy for Progressive MS Clinical Trial are presented at the MSParis2017 Congress.

The first medication for the treatment of Primary Progressive MS is approved by the Therapeutic Goods Association (TGA) for use in Australia. This medication is unfortunately declined for the PBS in late 2017, however, MSli organisations continue to advocate for MS fe this important medication to be listed on the PBS.

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COMMUNITY

B RIN G IN G US CLOSER

World MS Day World MS Day is the MS movement’s annual campaign to raise awareness and support and connect the 2.3 million people living with MS worldwide. It’s a day to celebrate global solidarity and hope for the future. In 2009, MSIF along with members such as MS Australia who represents MS Queensland, initiated the first World MS Day. Together we have reached hundreds of thousands of people around the world, with a campaign focusing on a different theme each year.

BRINGING US CLOSER Research is bringing us closer to ending MS To succeed, we need to work together as a global MS community to find ways to improve life with MS now and end MS forever. The #bringinguscloser campaign is about connecting people affected by MS with those involved in MS research, including scientists, students, nurses, fundraisers, volunteers, and more. It’s a chance to come together to celebrate what we’ve achieved in MS research so far, and share our hopes for the future.

World MS Day is officially marked on 30 May. Events and campaigns take place throughout the month of May. It brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis. World MS Day 2018 will take place on Wednesday 30 May with the campaign called ‘Bringing Us Closer’ and the theme of Research.

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Fundraise Participate in one of our Team Cure MS community fundraisers - you can find these at TeamCureMS.org.au Snap If you’re in the Brisbane region, why not take a photo of one of our landmarks that will be lit up in red and share it on social media using the hashtags #bringinguscloser and #worldmsday. Don’t forget to tag us as well (@msqld). Party Hold your own event whether it’s a small coffee meet up or a BBQ. You can also submit your event to the World MS Day events so it can be included in the Multiple Sclerosis International Federation’s list of World MS Day events showing our impact across the world! Share Share MS Queensland’s World MS Day social media posts with your friends.

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Volunteer Join us while we shake tins at one ofMS these life Queensland Rail train stations: Central, Fortitude Valley, Milton, Roma Street, South MS life Bank, and South Brisbane.

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HOW CAN YOU GET INVOLVED?

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...a day to celebrate global solidarity and hope for the future.”

30 MAY 2012 FOLLOW OUR WORLD MS DAY SOCIAL MEDIA ACTIVITIES... @msqld @msqld @msqld

YOU CAN ALSO SHARE YOUR OWN ACTIVITIES BY USING THE HASHTAG...

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60 years is such an achievement and I am so grateful to live in a world that has organisations like MS Queensland. I also feel very fortunate to be living in an era of such MS discovery. Diagnosed in 2005, my Neurologist told me that within ten years oral medication would be available. At the time 2005 was too far away to think about, but indeed 10 years have passed and there is not one, but a number of new medications available and people living with MS now have more choice of medication. Advocating together and with government we hope before long this will also include medication options for people living with all types of MS. The past 20 years has seen so much progress made towards MS treatment, management, awareness, education about lifestyle and diet and what we hope will soon bring us closer to a cure and also assists us to live our best life.

In the many conversations I’ve had with our community, I am reminded that although we are reaching the final phase of the NDIS rollout, and there remains ongoing work to be undertaken for the NDIS, we also have many members of our community that are over 65 This year’s World MS Day theme is “Bringing Us and not eligible for the NDIS. As an organisation Closer” which is about connecting the MS we acknowledge this, and we will continue to community to bring us closer together as well support and advocate for all people living with as closer to a cure. Looking back on our history MS regardless of any eligibility criteria. Working as an organisation, and the history of MS which with was first recognised in 1878 brings me so much MS li fethe Department of Health, we are keeping hope for our futures. We have come such a long up-to-date regarding My Aged Care, to also keep our way and the rate at which we are making new MS li fecustomers who are over 65 informed about their options. discoveries shows much promise. Although

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As we celebrate MS Queensland’s 60th birthday, we reflect on the past and it is brilliant to see that our support groups were there from the very early days of MS Queensland.

there is a heavy focus on research, we do not forget the people living with MS who still need the support of MS organisations and their peers in our community. Our 60th birthday is a year that truly sees us all come together as I continue to focus on you, our community. I am exploring ways for all of us to connect across the entire state. You will see we have introduced the MS Community Webinar which is an opportunity for us to gather virtually across the state. It is great to see so many people including many new community members connecting via webinars and social media. We hope you find the webinars valuable and an opportunity to connect with a range of people living with MS who may not necessarily be a member of your support group.

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Support Group Update

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Community Engagement Wow, what a year to be a part of the MS Queensland community!

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We have such a rich history of support groups and I’m proud to be a part of this history as I’m sure many of you are as well. It all started back in 1969 when the Toowoomba Ladies Auxiliary was formed, Brisbane then formed in 1970 followed by Bundaberg in 1971. Many years on, in 1985 MS self-help groups known as People with MS (Queensland) were formed in Brisbane, Townsville and Cairns.

I’ve had the pleasure of continuing to meet new faces in this past year. Faces of those who have been living with MS for decades as well as the newly diagnosed. I am very grateful to the people who have shared their stories with me and trust me with sharing their stories more broadly to build awareness of our cause. I look forward to bringing you more updates later in the year, supporting the World MS Day theme, ‘Bringing us Closer’ about what we have achieved and further connecting our community throughout the rest of the 60th year for MS Queensland.

There have been a couple of name changes along the way from ‘Ladies Auxiliary’ to ‘People with MS (Queensland)’ to what we know today as the ‘People living with MS Support Groups’. Despite the name changes, what we know hasn’t changed is our sense of community and support for one another. We’ve grown to over 35 support groups across Queensland with over 700 members and I look forward to our support groups continuing to grow. Throughout our birthday year we are featuring a different support group each week on MS Queensland’s social media channels (Facebook, Instagram and Twitter). Please look out for our #SupportGroupSunday posts and share with your friends.

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MS li feYOUR LOCAL SUPPORT GROUP AT FIND MSQLD.ORG.AU

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PEOPLE OUR

Community There have been so many faces who have supported MS Queensland over our 60-year history. There are those who are living with MS who dedicate much of their life to advocate for others, fundraise for MS Queensland and act as ambassadors for MS. Here we bring you just some of our MS community from over the years. There will be plenty more to come in Volume II of our MS Life special edition which is set to be released in December 2018.

Ronda Bennett Living with MS. Resident of Granston Lodge and soon to be Springfield Apartments. Fierce advocate for accessibility. MS may limit her mobility, but it doesn’t limit her determination. Judy James Living with MS. Founding member of the Toowoomba & District MS Support Group, MS Queensland Volunteer of the Year 2010-2011 and MS advocate.

Professor Michael Pender Professor Pender has dedicated his entire career to MS, starting in neurology in the 1970s and now the leading researcher in the Adoptive Immunotherapy for Progressive MS Clinical Trial. Professor Pender is considered a close friend of MS Queensland, offering hope to many people living with MS and bringing us closer to a cure. Gary Allen Living with MS. Personifies resilience and first patient in Professor Pender’s experimental treatment as part of the Adoptive Immunotherapy for Progressive MS Clinical Trial.

Kim and Ian Harvey MS has been a part of Kim’s life for many years. Her sister Dani was diagnosed with MS in 1989. Wendy Lovelace Kim’s late husband Ian was also living with MS, however, his journey was quite different with Ian Living with MS. MS ambassador and advocate, passing away in 2016. Kim continues to support architect and universal access consultant. MS Queensland since Ian’s passing…”I’d like to Convener of Queensland Action for Universal MS li fe Design and MS Queensland Board give back to the organisation that helped and Housing cared for us so much. They were my strength in Member for a decade. Wendy uses her fe the hardest of moments. In memory of Ian.”MS li expertise to improve the lives of others living with MS and other disabilities.

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Natalie Walsh Living with MS. MS ambassador, advocate and MS Queensland employee. Nat has the fullest of hearts and is a dedicated advocate for people living with MS. Nat was instrumental in advocating for the introduction of the Medical Heating and Cooling Electricity Rebate as well as building awareness for MS across all levels of government.

Lisa Trendle Living with MS. Athlete (swimmer) and an inspiration to many. Lisa competes nationally and has been referred to as a trail blazer for her club and others with a disability.

Ann Langely Lived with MS. Ann was a mentor and an inspiration to many people living with a disability. As an outspoken advocate, she was Dr. Judith Greer also a positive role model for people with MS. Dr. Greer is an immunologist who has dedicated She was an exceptional ambassador for MS and contributed enormously to enhancing most of her career to MS research. Her the influence and position of people with MS research is focused on trying to identify brain throughout Australia. components that are targeted by the immune system in people with MS, how immune Darren Mason responses in the nervous system relate to the Living with MS. Resident of Granston Lodge and symptoms experienced by people with MS, soon to be Springfield Apartments. A regular and developing ways to specifically turn off the MS li fe cheer club member, you will often see event damaging immune responses. Darren at MS Queensland events cheering on MS li feparticipants. the

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PEOPLE Sian Burrows Living with MS. Doesn’t let MS stop her, she says “doing nothing is not an option”. Kindly shared her AHSCT story with MS Queensland for MS Life Spring 2017. Tim O’Maley Tim is a specialist MS Nurse and MS Queensland Manager of Specialist Education. Tim has been working in neurosciences for more than 20 years. Tim helped develop an immunotherapy support service at the PA Hospital in Brisbane before moving to support the MS Clinic at the Royal Brisbane & Women’s Hospital. Wendy Swan Wendy has worked for MS Queensland for 23 years. She’s committed to the MS cause and leads our Customer Support and Sales Team who are our frontline phone and email support team. Eleanor Rigden Just 21 when she was diagnosed, Eleanor struggled to deal with her diagnosis, but she overcame the challenges and she’s now a familiar face at many MS Queensland fundraising events. She’s also known as a tin shaker extraordinaire when she volunteers for MS Queensland on World MS Day asking for donations at train stations across Brisbane. Rachel Kerr Living with MS. Diagnosed at just 17 years old, Rachel has become an MS ambassador, volunteer, fundraiser and event participant.

Jenny Parker Living with MS. Volunteer and now full-time MS Queensland employee. Jenny squeezed in any volunteering she could whilst juggling a full-time job. In 2013, Jenny started as a paid employee of MS Queensland and is now the backbone of our Project Dignity 120 initiative making sure everything runs smoothly behind the scenes. John O’Dempsey Living with MS. MS Ambassador, member of the Gold Coast MS Support Group, former MS Queensland Board Member and long-term supporter of MS Queensland. John says MS made him examine the priorities in his life and appreciate relationships with loved ones.

Beverley (Bev) Cornwall Living with MS. Member of the Hervey Bay and Maryborough Support Group and long-term supporter of MS Queensland. Two decades ago, Bev began organising an annual function the ‘Golden Originals’ to bring together the older Gail Harbott pioneering generations of her community to Living with MS. Gail is a committed supporter of reminisce about their youth and rekindle old MS li feQueensland and long-term member of MS friendships. Having started with 38 people, the the Gold Coast Support Group. More recently event now hosts more than 200 people with MS li fehas kindly shared her MS story to bring Gail funds donated to MS Queensland. awareness to the high need housing crisis.

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Heather Winning Lived with MS. Long-term resident of Granston Lodge, chairperson of the Granston Lodge Residents Management Committee and advocate for all living with MS. Heather said, “I tell everyone who will listen that this [Granston Lodge] is our home, and people know that if it is not treated as such then I am going to speak up!” We hope Heather is proud of how far we have come in our housing journey.

Josie Potter Living with MS. Josie is a long-term supporter of MS Queensland. She’s shared her Living Positively with MS story, participated in multiple MS Brissie to the Bay bike rides, raised significant funds for MS Queensland, and served as a long-term member of the Kingaroy MS Support Group. Bernadette Gazzard MS Specialist Nurse for more than 30 years. Bernie as she was known, provided information on treatment and symptom management to countless people living with MS over her career at MS Queensland.

Robbie Carr and family Living with MS. Robbie lives positively with MS despite it hindering his ability to do the things he loves. Robbie along with his sister Katherine and mum Heather are generous, warm-hearted Rachel Matthews and willing to share their vulnerabilities to Living with MS. Long-term community, arts and bring awareness and raise funds for MS. They disability activist, former MS Queensland Board are champions of Project Dignity 120 and lookMS li fe and member of the Brisbane Friends Member forward to a future where Robbie has his own and Co. Support Group. fully accessible, independent living home.

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EVENTS A H I S TO RY O F O U R

Fundraising While MS Queensland receives some government funding, there is a significant shortfall of funds required to continue to be the first choice for MS information, education, treatment care and support across Queensland. Not only do we run our own fundraising events and campaigns, we also rely on the support of the Queensland community. Whether it’s through running an event of your own, becoming a regular giver, making the occasional donation, nominating MS Queensland in your will, purchasing a lottery ticket or general philanthropic support, we are extremely grateful for your contribution. Our fundraising history truly displays the commitment of our supporters... “ There’s a big difference between interest and commitment. When you’re interested in doing something, you do it only when circumstances permit. When you’re committed to something, you accept no excuses, only results.”

1973

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Our first source of fundraising income came in 1961, with a state-wide drive for used dentists’ amalgam. Over 600 pounds (270kgs) of amalgam was collected for re-use. MS Queensland was paid per pound collected.

MS Queensland receives its largest donation so far, an anonymous donation of 150 pounds. This equates to approx. $4,000 in today’s figures.

1971

1972

Our first commercial fundraising venture, the Valley Thrift Shop, on Wickham Street Fortitude Valley opened, managed by the Auxiliary.

Keepsake MS Keys become available for the first time at a cost of 60c with the intent of building awareness of MS and MS Queensland.

International film star Gina Lollobrigida visits MS Queensland as part of a nation-wide ‘Aid to MS’ fundraiser. We also launch the Melbourne Cup Day annual Fashion Parade and luncheon.

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1965

1975

We begin to operate on a full-time professional basis with the following fundraising income streams: Greyhound Art Union, Lucky Number Envelopes in retail stores, Queensland Showjumping Championships at Beenleigh, The Tour of Liberace’s Clothes, a Boat Show on the Brisbane River, Auxiliaries and the Thrift Shop.

The MS Queensland Middle Ridge Hall Auxiliary (Dance Hall Committee) holds its first Annual Dance to raise funds for the MS cause, a fundraiser that still continues today!

1961

We launch the limited edition ‘Key of Life’ designed by Pierre Cardin.

1976

1970

1973

Sadly MS Queensland’s founder, Mr. Bill Mathers’ passes away and his staff kindly donate $5,000 in his memory. This could be considered MS Queensland’s first bequest.

We engage 20 well known Queensland sporting and media personalities including swimmer Steve Holland and cricketer Greg Chappell as formal Ambassadors.

1979

1980

The MS Happy Wanderers Tour of Norfolk Island commences.

The first ‘MS Mr. Spunky’ competition is launched and won by 20 year-old MS life immunology student Chris Hawthorne. MS life

The Brisbane Ladies Auxiliary is formed and became an important source of fundraising income.

1977

We introduce the state-wide MS Art Union.

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1981

1982

We open our first fundraising office in South Brisbane housing telephone staff, general office staff, and product marking and distribution of goods staff. With the expansion of our fundraising team came the opening of the MS Discount Mart selling new and used goods. A street collection campaign involving 26 schools collecting $14,302 commences and the Wheelchair Rally raising $8,500 towards an MS bus is launched.

1987 We launch the Capital Appeal chaired by Sir John Rowell, Chair Queensland Legal Aid Commission.

The Mr. Spunky competition is rebranded as the ‘MS Quest’ with categories opened for both male and female entrants. The MS Quest is launched by Greg Chappell.

1988

We launch the MS Limited Edition Art Union

We introduce a MS Sports Auction with Betty Cuthbert our guest of honor, raising $4,000. We also hold the Rugby Union Wallaby Team Dinner and auction which raises $8,000 and is attended by more than 530 people.

1990

In the International Year of Literacy, we help launch the MS Readathon, a national school-based fundraising reading program that teaches students about MS and raises vital funds to support Australians living with the condition.

1990

1998

1999

2005

We introduce the ‘MS Brissie to the Bay’ bike ride which grows to be MS Queensland’s flagship fundraising event which now raises over $1 million annually.

What was then known as the MS Moon Walk is introduced with almost 1,000 participants raising close to $22,000.

The ‘MS Walk’, a new fundraising event based on the hugely successful MS Walks in the USA and Canada debuts on the Sunshine Coast. More than 140 people joined the Sunshine Coast MS Walk and raised more than $13,000.

We introduce the ‘MS DirectDonor’, a subscription allowing supporters to contribute to MS Queensland automatically each month. This continues to this day.

2011 The MS Brissie to the Bay bike ride wins the national award for ‘Australia’s Best Fundraising Event’ from the Fundraising Institute of Australia.

MS Swimathons are added to the MS Queensland suite of fundraising events raising over $1 million since MS fe li their inception.

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1983

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2016

We have the biggest MS Brissie to the Bay in the event’s history with more than 9,000 riders and life raising $1.5MS million.

We introduce ‘Team Cure MS’ a community fundraising campaign that raises money specifically for MS research.

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EVENTS

INTRODUCING

Charlie & Jenny Bennett

OUR ANNUAL MS

Brissie to the Bay

Charlie and Jenny Bennett first got involved in the MS Brissie to the Bay bike ride through the event’s cheer club. The MS Cheer Club is made up of over 100 people living with MS, and their family and friends, who cheer each and every rider across the finish line. After being involved in the Cheer Club for a number of years, Jenny became one of our “Distance Starters” as captain of ‘Jenny’s Juggernauts’. Not only does Jenny appreciate the fundraising efforts of our Brissie to the Bay riders, she enjoys being able to share her story so they understand the importance of their fundraising and how it helps people like her living with MS.

The MS Brissie to the Bay bike ride began in 1990 with a total of 80 riders. Fast forward to 2018, where we’ll see over 5,000 riders taking part in what is now known as ‘the ride to fight MS’. In 1994, Brissie to the Bay became MS Queensland’s flagship event – with 1,000 cyclists riding from Brisbane to Manly. Since then, the event has been consistently growing with over 2,000 riders in 2005, and then expanding to over 4,000 riders in 2011. The year 2015 saw the event celebrating its 25th anniversary with a record breaking 9,200 riders raising $1.5 million in this milestone year! In more recent years, the ride has seen just over 5,000 riders participate each year. As participant numbers have expanded, so too have the riding distances on offer. In 2006, the offerings were 10km, 30km and 55km. The year 2011 saw the introduction of the new 100km course, adding more elements of the bay for those willing to take on this extra challenge. The shorter distances were also revised to offer 10km, 25km and 50km. It was for this event that MS Queensland received the national honour of ‘Australia’s ‘Best Fundraising event’ from the Fundraising Institute of Australia! A new course was also added in 2017, a challenging 160km course for the more seasoned riders. This was a ‘one year only’ distance and saw several previous participants return to take part in the new challenge.

Over the past 28 years of the MS Brissie to the MSBay life bike ride, we have met endless inspirational and dedicated individuals who have helped make thislife MS event the success it is today. And to those, we say thank you!

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RON, ONE OF OUR DISTANCE STARTERS

Jenny was diagnosed with MS in 1973 when she was in year 10 at school, and just 15 years of age. At the time of her diagnosis, Jenny had lack of balance when walking to and from the school bus and lots of numbness, especially in her left arm and one day not being able to hold a fork. Her mother, who was a nurse, insisted she see her GP and was then immediately referred to a Neurologist where she was diagnosed with MS.

CHARLIE (L) AND MEMBERS OF TEAM JENNY WITH JENNY SEATED AT FRONT. INTRODUCING

Ron

Each year, we invite someone living with MS to be a ‘Distance Starter’ for each of our courses and Ron who has been living with MS for 22 years, has been the captain of ‘Ron’s Renegades’ for a couple of years now.

It was at the age of 19 that Jenny met Charlie and they have now been married for 38 years! During that time, Jenny’s MS has progressed, and her use of walking aids and equipment has increased. When Jenny’s MS progressed to the point she could no longer work, her husband Charlie became her full-time carer. Charlie affectionately calls Jenny his “little Ferret” and says “she’s the whole reason I get up every day”.

Charlie joined Jenny as a member of the Cheer During this time, Ron has moved from Club, and in 2015 decided it was time for him to MS Queensland’s Granston Lodge to get on his bike so he signed up for the 25km ride. our new Albany Creek Apartments. His training was going so well and he was fitter We would often see Ron sitting in his than ever, so he decided to increase his distance to wheelchair outside of Granston Lodge 50km. He now rides in the 100km course and has enjoying the sun with a big cheeky smileMS li personally fe raised over $60,000 having the honour on his face. On event day, Ron loves of being a Platinum MS Legend for 3 years in a getting around to as many riders as row.fe Charlie says MS is “an arse of a disease” and MS li possible to thank them for fundraising is doing his bit to hopefully one day find a cure. through the ride.

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C E L E B R AT I N G 3 0 Y E A R S O F

Lotteries

OUR AMAZING

Volunteers MS Queensland paved the way for luxury car lotteries back in 1988.

@BrissieToTheBay @BrissieToTheBay @brissietothebay brissietothebay.com.au events@msqld.org.au 07 3840 0828

The MS Brissie to the Bay would not be possible without the fabulous support of our volunteers. Thousands of volunteer hours have gone into the event over the years, with over 100 volunteers lending a hand each year. The hard-working group is comprised of corporate volunteers who lend a hand with packing and collating the rider packs prior to the event, members of the public who put their hand up to attend as a course marshal or drink station assistant and MS Queensland staff lending a hand at home base to make sure things run smoothly at the start and finish lines.

Alyson says, “Volunteering is a great way to meet new people, enjoy different experiences and help others. I feel it is important to be part of the community and to show our sons that community involvement is a great thing. MS Queensland is amazing with the help it provides to families and support given to people living with MS. By volunteering we can help in just one small way.”

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95%

$30 MILLION

AVERAGE % OF TICKETS SOLD ACROSS THE HISTORY OF DRAWS

WORTH OF PRIZE CARS HAVE BEEN GIVEN AWAY

The lottery programs have focused heavily on MercedesBenz Vehicles.

MS LOTTERIES STARTED IN

In the last few years, we have expanded prize options to include brands such as Maserati, Aston Martin, Audi and even a quarter of a million-dollar Antarctica holiday option for our June 2018 MS 300 Club draw.

1988

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Thank you Alyson and co! And thank you to all the volunteers who give up their time for this event – we would be lost without you, and so would some of the riders!

For the past six years, one key group have been Would you like to get involved with the MS lending a much-needed hand as drink station Brissie to the Bay bike ride in 2018? assistants. Alyson & Peter Allen first started If you’re interested in signing up as a rider, volunteering at different events with their simply visit brissietothebay.com.au – click sign friends Liz and Terry Henderson, when their MS feup and complete the registration process. If li kids were in high school. Together this awesome and you’re interested in volunteering or joining us as foursome provides that last bit of help to the a member of the cheer club, please contact the MS fe riders toughing it out over the 100km course, at li team. the Chandler drink station and rest stop.

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30 years later, the MS Limited Edition and MS 300 Club programs still provide some of the most exclusive, best odds luxury car lotteries in Australia and raises over $1.5 million for MS Queensland annually.

4

LOTTERY DRAWS EACH YEAR

@MSLIMITEDEDITIONLOTTERY @ms_limitededition mslimitededition.com.au 1800 060 210

CUSTOMERS HAVE WON TWICE!

226

1ST PRIZE VEHICLES MS life GIVEN AWAY

MS life

THE LOTTERY PROGRAM HAS BEEN RUNNING FOR

30 YEARS

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MS LIFE

VOLUME I, 2018

EVENTS T O G E T H E R W E W I L L B E AT M S

Team Cure MS Over the years, MS Queensland’s community fundraising campaign has grown and evolved. After fundraising for many years under the ‘Kiss Goodbye to MS’ brand, in 2016, MS Queensland launched its very own ‘Team Cure MS’. Team Cure MS is a community of likeminded people doing extraordinary things. The funds raised through Team Cure MS supports researchers who are feverishly looking for better MS treatments and ultimately a cure. The MS Big Dinner Party is now part of Team Cure MS, along with the Pledge your Birthday campaign and any mass participation events happening across the state such as the Bridge to Brisbane fun run, Tough Mudder and the Townsville Running Festival. In the most recent financial year, Team Cure MS will have raised nearly a quarter of a million dollars. Over the next few years, we are working towards increasing this to have Team Cure MS raise $1 million for MS research each financial year. This is an ambitious goal, but with the support and dedication of our amazing community fundraisers who can create or join a Team Cure MS event, we know this is achievable. One of these amazing community fundraisers, is Col Chandler...

One day Col was in his shed and had to call his son to help him put his motorbike stand down. This is the moment when Col realised he was facing some serious problems and needed to seek medical advice. Col was diagnosed with primary progressive MS at the age of 59 years. Immediately after his diagnosis, Col wrote a life plan. “I wrote down the things I definitely couldn’t do, the things I could still do and the things I might be able to do. That list tends to change as the condition progresses.”

Col can still be found surfing, although now on a Meet Col, living with MS for 13 years and Team knee board. He still rides motorbikes, but now Cure MS Superstar. on a trike. He still climbs mountains, but often Col has always been the active and adventurous on all fours! type, from surfing in Costa Rica and Mexico MS life “MS has changed what I do, but it hasn’t to riding his bike across New Zealand. All stopped what I do. In my case, I don’t care if I this changed, when Col started experiencingMS li fe symptoms including weakness in his left leg and don’t make it up the hill, or on the wave. Trying is enough.” severe fatigue.

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Last year, Col organised a fundraising event to raise funds for MS research, and called it ‘The Goat Track Madness’. The Goat Track Madness involved Col making his way up the Mount Nebo goat track in or behind his wheelchair for 3.2 kilometres. He was joined by 300 supportive and enthusiastic walkers, three goats, 11 dogs and 13 musicians, including a choir. Col raised over $20,000 to help beat MS and find a cure. Col and his family have supported and raised thousands of dollars for MS Queensland over the years. He has participated in the MS Moonlight Walk, and in 2016 Col’s son Luke cycled with two friends from Brisbane to Sydney, riding over 100km each day for nine days. What legends! MS life Col has given hope to thousands of Queenslanders living with MS.

Together we will beat MS.

MS life

@TeamCureMS @teamcurems teamcurems.com.au teamcurems@msqld.org.au 07 3840 0887

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MS LIFE

VOLUME I, 2018

EVENTS C E L E B R AT I N G 2 0 Y E A R S O F T H E M S

Moonlight Walk The MS Moonlight Walk is celebrating its 20th birthday this year! Like many of our fundraising events, the MS Moonlight Walk has grown and evolved over the years, but the ultimate goal of the event is to raise funds to support those living with MS. In 2005, the event was a 10km walk called the ‘MS MoonWalk’, however, after the passing of Michael Jackson, the 2010 walk had a slight name change and became the ‘MS Moonlight Walk’. During these years the event consistently had just over 1,000 participants and then began to grow, attracting nearly 2,000 participants in 2011. This growth could be attributed to the introduction of the 5km walk alongside the 10km course. The introduction of the shorter 5km course allowed many of our MS community to participate with a more realistic length for people living with MS who may have experienced challenges completing the 10km option.

and 10km courses take in the sights of the Brisbane River. The 10km course goes along the illuminated Kangaroo Point Cliffs, Story Bridge and lush Botanic Gardens before crossing the Goodwill Bridge and heading back to the Southbank Parklands. The 5km course heads across the Goodwill Bridge, through the Botanic Gardens and then returning back to the Southbank Parklands. Each walker receives their very own MS lantern that lights up the walk path and signifies unity as thousands gather to walk for a common cause: to help raise much needed funding for people living with MS. Many of our walkers form teams, and come dressed in an array of costumes - there are tutus, tiaras, super heroes, fluoro and more! The MS Moonlight Walk also sees nearly 300 inspirational people living with MS take part, with the support of their friends, family and colleagues. One of those inspirational walkers is Jess, who was diagnosed 5 years ago at the young age of 27. Jess has an amazing team of more than 100 family and friends who walk beside her, including her mother Jan.

Participant numbers have steadily increased again, with 3,300 walkers taking part in 2014 and over 4,700 walkers taking part in the most recent Moonlight Walk in October 2017. Fundraising through this event has also Jan has seen the struggles Jess has experienced increased over the years. Online fundraising with her MS symptoms and appreciates was first introduced in 2007, and 2010 was the the support they have received from MS first year an event fundraising goal (of $100,000) Queensland. Jan says, “I have a lot of passion for was promoted. In 2012, the goal was to raise people who make a difference to someone’s life $300,000 from the walk, this then increased when they are most vulnerable, therefore I have drastically in 2014 to $550,000 and since then, made MS li fe a commitment to raise money for this the Moonlight Walk has had a fundraising goal worthy cause.” The ‘Walk for Jess’ team first took of over $600,000. part in the MS Moonlight Walk in 2014 and since

MS li fe have raised close to $70,000. This money then

The MS Moonlight Walk is a great event for the community to get involved, as both the 5km

has been raised from countless sausage sizzles

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@MSMoonlightWalk @MSmoonlightwalk @msmoonlightwalk msmoonlightwalk.com.au events@msqld.org.au 07 3840 0828

(too many to count!), Mother’s Day and Father’s Day events, a wine tasting evening, and more. Jess has even received support from her friends as they created the ‘Ride for Jess’ team in the MS Brissie to the Bay bike ride. As with all our events, our dedicated volunteers are essential to the successful delivery of the event, ensuring that all the participants are kept safe and on track. Spread across Brisbane parks, from Southbank, to Kangaroo Point and the Botanic Gardens, our Moonlight Walk volunteers have provided endless hours to the event, giving up their evenings to fight MS.

she just had to have one for herself, Wendy coordinated a small group of ladies to also join in the fun! Every year since then, the ladies put their hand up to manage the course marshal positions at Kangaroo Point for the 10km walkers. Once they’ve finished with their official duties, they all celebrate their involvement with a picnic in the park, watching as the walkers and their lanterns go over the Story Bridge. Wendy is hanging out for the day the ‘glow in the dark T-shirts’ make a comeback for the volunteers!

Since 2007, one of the key groups of volunteers Get involved… assisting with the Moonlight Walk has been Would you like to take part in this year’s MS wrangled by the lovely Wendy Napper. Wendy Moonlight Walk on Saturday 6 October? Visit was first inspired to volunteer by her good moonlightwalk.com.au and register your friend and hairdresser who was diagnosed MS fe Keen to volunteer at the event? Contact li interest. with MS in 2005 and who volunteered herself our team! at the Moonlight Walk in 2006. On hearing MS fe li about the awesome glow in the dark t-shirts the volunteers were issued with, and deciding

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MS LIFE

VOLUME I, 2018

EVENTS EIGHT YEARS OF MS

Swimathons The Swimathons have grown and changed a lot in their 8-year history with the Swimathon concept first being added to MS Queensland’s fundraising event suite in 2010. The first Swimathons were just two 24-hour Mega Swims in Cairns and the Gold Coast in 2011 and they have since expanded across Queensland. In 2012, Jindalee was added and the decision was made to change the Swimathons from 24 hours to 12 hours. Over the years the Swimathon season grew even more, expanding to Townsville, Toowoomba, Rockhampton, Mackay and Redcliffe. More recent additions have included the Griffith Sport - Mt Gravatt, Mosaic Property Group MS Swimathon on the Sunshine Coast and Hervey Bay Swimathons.

FUND R AISER IN THE SP OTLI G HT

Sherriff Sherriff was just seven years old when he first entered the Townsville MS Swimathon and six years later Sherriff is still going strong, as Team Captain for the MS Superswimmers. He aims to bring awareness and much needed funds for people in his community living with MS like his Nonna, Chrissy who has been living with MS for the past 15 years.

The Swimathons have seen over 6,000 participants take up the 12 hour swimming challenge. Over time we have seen everyone from a solo participant in Toowoomba Kel Lowndes, swim the 12-hour event twice on her own in preparation for the English Channel, to the incredible Thelma Bryan from Cairns who swam in the Swimathon for six years at 87 years of age! We have seen Emergency Services Teams use their rescue boat to carry people through the challenge and real-life Mermaids from Townsville strut their stuff around the pool. Most importantly we have seen these incredible events collectively raise over $1.4 million for people living with MS. These events wouldn’t be possible without the constant dedication and enthusiasm of all the fundraisers, suppliers and MS life volunteers involved. We thank everyone for all their support and are so excited to start the MS life 2018/19 Swimathon season!

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Sherriff just completed his 6th Swimathon at the Long Tan Memorial Pool, and his total fundraising figure is already well over $16,000 and it’s still climbing!

@MSswimathon @msswimathon msswimathon.com.au swimathon@msqld.org.au 07 3840 0812

The success of the Swimathons over the years is due to the enthusiasm and continued support of amazing people like Chrissy, Sherriff and his Mum Monique. Thanks Sherriff for being one of our fundraising superstars!

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Profile for MS Queensland

MS Life - 60th Birthday Edition Volume I 2018  

Celebrating a 60th anniversary is a significant milestone for anyone of us and probably more so for an organisation with such humble beginni...

MS Life - 60th Birthday Edition Volume I 2018  

Celebrating a 60th anniversary is a significant milestone for anyone of us and probably more so for an organisation with such humble beginni...

Profile for mslife
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