AUTUMN 2018 ISSN 1833-8941 Print Post Approved: 100003204 THE RESEARCH ISSUE How the world’s brightest minds are tackling multiple sclerosis 1 intouch autumn 2018 www.ms.org.auwww.ms.org.au www.ms.org.au autumn 2018 intouch PB › CEO’s message WELCOME to your first Intouch magazine of continued investment and collaboration in 2018 – a special edition we’ve dedicated to research and advocacy crucial. multiple sclerosis research, in accordance The goals of treatment are to slow, stop with the theme of this year’s World MS Day. and reverse disability – and in these pages, But first, the magazineitself. We’ve heard you can read all about how the global the MS community’s feedback on its look, research community is tackling the challenge, feel and readability, and we’ve redesigned as well as hear stories from people who’ve it with those areas in mind. We thank you experienced and contributed to the advances sincerely for your comments and hope you in multiple sclerosis research. like the new look as much as we do. We stand by our ongoing commitment We’re very much looking forward to to multiple sclerosis research, we celebrate Publisher: Multiple Sclerosis Limited celebrating World MS Day this year, along what it’s achieved so far, and we look forward ABN: 66 004 942 287 with its theme of research ‘bringing us closer’. to the day the tireless work of the scientific Editor: Antony Giummarra Since inception we have been committed community has cured this disease. Advertising enquiries: [email protected] Privacy Policy: Visit www.ms.org.au to providing services to focus on helping for our full document people affected by multiple sclerosis and their ISSN: 1833-8941 families aim for the best possible outcomes. As well as focusing on early detection and ACT Robyn Hunter Gloria McKerrow House education, access to affordable and effective 117 Denison Street, Deakin ACT 2600 treatment options is vital – which makes our Chief Executive Officer, MS NSW The Studdy MS Centre, 80 Betty Cuthbert Drive, Lidcombe NSW 2141 › News from MS Advisory Councils Tasmania 1 Liverpool Street, Hobart TAS 7000 ALL positions in the MS Advisory Council of Navigating My Aged Care: As Victoria NSW have been filled! Thanks to everyone promised, MS is developing a resource to The Nerve Centre, who applied – Chair Meg McIntyre is looking help people over 65 and living with multiple 54 Railway Road, Blackburn VIC 3130 forward to working with the reinvigorated sclerosis understand and pre-plan for My MS Connect: council and the MS community of NSW. Aged Care packages. You can contact 1800 042 138 (free call), 8.30am–5pm weekdays MSAC Victoria has been particularly busy. MS Connect (1800 042 138) or view a recent Projects include: webinar here: www.ms.org.au/MyAgedCare Regional offices: GPs and the NDIS: At MSAC-Vic’s Home Safety: Another new Visit www.ms.org.au and click ‘Contact Us’ request, MS has created a guide to help GPs recommendation was for a completely new complete the NDIS access request form online resource package about safety in the Disclaimer: Information and articles contained in for people living with multiple sclerosis. The home: why it is important and how to get Intouch are intended to provide useful and accurate factsheet provides guidance on what to write advice and assistance. “I am pleased to say information of a general nature for the reader but are not intended to be a substitute for legal or in supporting evidence for their patients. View this recommendation is being taken up,” medical advice. Multiple Sclerosis Limited is not it at: www.ms.org.au/GPguide says MSAC-VIC Chair Nigel Caswell. recommending medical or legal advice and readers must seek their own as may be appropriate. GET INVOLVED – CONTACT MSAC Advertising disclaimer: Multiple Sclerosis Limited Email: [email protected] Social: www.facebook.com/MSAdvisoryCouncil does not endorse any one product or service over another; nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for exchange or return at the › time of purchase with a specific supplier because Contents Multiple Sclerosis Limited is not liable in the event the product is not satisfactory. 3 News: More ways to get involved THE WAR FOR DRUGS 4 My Story: Morgan’s special take on 8 Whodunnit? Meet the woman who © Multiple Sclerosis Limited 2018 a wild ride through medical science led the way for PBS-listed treatments 13 Fundraising: On your Mark ...run! facebook.com/MSGetInvolved 14 Education and events AHSCT EXPLAINED twitter.com/MSGetInvolved 10 The science: Can blood stem cells RESEARCH OVERVIEW reboot the immune system? youtube.com/MSGetInvolved 6 MStranslate: Seeing MS Award 12 The experience: Aussies Sian and instagram.com/MSGetInvolved winner Brett Drummond’s guide Jesse share their stories 2 intouch autumn 2018 www.ms.org.au www.ms.org.au autumn 2018 intouch 3 › CEO’s message NEWS › Get on board for World MS Day THE countdown is on to World MS Day There’s plenty going on offline, 2018, and right up until Wednesday 30 too. In Tasmania we’re hosting an MS May we’ll be joining the global campaign Symposium at the Hobart Function and reflecting on how research is bringing us Conference Centre on World MS Day, closer to better treatments and a cure for with keynote speakers including Assoc multiple sclerosis. Prof Tomas Kalincik, neurologist, and We’re kicking off our lead-up with this Dr Litza Kiropoulos, senior lecturer in research-themed edition of Intouch – but clinical psychology, from The University › from now until 30 May we’ll also be part of Melbourne; and Dr Kaylene Young, a Go for Gold of live and online events that we’re hoping Menzies Institute senior research fellow. and make like Liz you’ll join us in to show the indomitable We’ll have special World MS Day spirit and solidarity of the MS community. pins and ribbons on sale through APPLICATIONS are now open for the 2018 Online, the hashtag #BringingUsCloser www.shop.ms.org.au as well as our MS Go for Gold Scholarships, so it’s time to is your ticket to finding people and content offices. And there’ll be tonnes of think about what dream you want to follow! on sites such as Facebook, Twitter and community fundraising initiatives you can Instagram. World MS Day 2018’s research be part of, including Wear Red for World MS Go for Gold scholarships of up to $3000 theme makes this a great opportunity to MS Day in schools and corporate groups. each are funded by the MS 24 Hour Mega Swim, get people affected by multiple sclerosis Visit www.doitforms.org.au for more info and are available to anyone living with multiple closer to researchers, as well as each on community fundraising. sclerosis who’s been registered with MS for at other. We encourage you to interact and And visit www.ms.org.au/WorldMSDay least 12 months. The possibilities are endless, and share your thoughts and experiences. for all the latest news and events! we’d like to share with you Liz’s story, whose life was changed by her scholarship in 2013 under the Employment category. › Liz, a mother of two, was diagnosed with NDIS support relapsing-remitting multiple sclerosis in 2003. was never so “I was a training supervisor at AAMI when I was engaging diagnosed,” she says. “I continued for another year, as it meant the world to me and I was very good at it. But multiple sclerosis didn’t make it HAVE you started your NDIS journey easy working in a high-pressure environment. yet? If not, we’ve now made it even I had to leave for my health and I spent time easier for you to do so by setting up a worrying about my future and what I could do. new NDIS Engagement Team. Paige, Pauline and Vanessa (above) are just three of our lovely Engagement Team “I found bookbinding through making a gift members whose priority it is to help you understand, prepare and access supports for my nephew and fell in love with the whole available to you under the National Disability Insurance Scheme. process, its history and traditional methods. It was • Need help to connect to the NDIS? at this time that the Go for Gold scholarships gave • Seeking assistance to prepare for your planning discussion? me the chance I needed. • Want to talk to someone who can support you on your journey? “The money I was awarded has changed my The faces might have changed, but the number sure hasn’t! Call MS Connect on outlook on my world and brought immeasurable 1800 042 138 and take the first steps towards achieving your goals and living your life happiness and focus to my work. the way you want to. You can also check out our info sheets and online tools at www.ms.org.au/NDIS “I am still bookbinding and currently sell on the Etsy marketplace.” › To check out Liz’s beautiful handcrafted leather It’s time to brush up on your art journals, visit www.etsy.com and search for The MS Art Exhibition is back in August to show and/or sell to our wonderfully Alchemy Bound Books. 2018, and we’re calling on every member supportive community at our annual Inspired? You’ve got until Monday 25 June to of the MS community to help us make it celebration of the power of art to talk, get your application in.