SPR/SUM 2014 ISSN 1833-8941 Print Post Approved: 100003204 FITNESS PAYS OFF READ CHELSEA’s STORY ON paGE 4 INSIDE ALSO 2014 MS GO COGNITIVE FOR GOLD ISSUES WINNERS How one man faced his challenges NDIS: WHAT WE NOW KNOW www.ms.org.au SEE PAGE 12 › CEO’s message What a highly successful year it’s been. Our Seeing MS campaign gave the disease more ‘visibility’ and we’ve captured learnings about the National Disability Insurance Scheme. You can read about that on page 12. We can also celebrate a host of achievements against an ambitious agenda of ‘step change initiatives’ and we have had a profitable 2013−2014 financial year. That means all the planning and restructuring we’ve been undertaking is paying off. During the year we revitalised our brand from MS Australia – ACT/NSW/VIC to MS, to signal our change in direction and unique brand positioning. Next year, we will proactively build on the success of the Seeing MS campaign by following it up with a targeted campaign on services. It’s also terrific that our new website design is underway and you’ll be pleased to hear we have consulted extensively with the MS community. But I want to take this chance to sing the praises of our dedicated staff and volunteers. They have worked Publisher: Multiple Sclerosis Limited ABN: 66 004 942 287 tirelessly and passionately to support people affected by multiple sclerosis and I thank Editor: Toni Eatts them. And while it is still a few weeks away, on behalf of all us at MS, I want to wish Advertising enquiries: [email protected] you and your family a merry Christmas and a happy New Year. Privacy Policy: Visit www.ms.org.au for our full policy document. ISSN: 1833-8941 ACT Gloria McKerrow House 117 Denison Street Robyn Hunter Deakin ACT 2600 Chief Executive Officer, MS Tel: (02) 6234 7000 NSW The Studdy MS Centre 80 Betty Cuthbert Drive › Lidcombe NSW 2141 News from MS Advisory Council Tel: (02) 9646 0600 Let’s end the year by acknowledging that during 2014 we have worked on Victoria The Nerve Centre these important projects with the MS Board and the MS leadership team: 54 Railway Road > Identified opportunities to improve the presentation and functionality of the Blackburn ViC 3130 Tel: (03) 9845 2700 MS website. > Identified specific needs of carers and those affected by MS who live in rural areas. MS Connect: 1800 042 138 (free call) > Gathered input from a wide range of people via direct contact, emails and monitoring Regional offices: Visit www.ms.org.au all MS Facebook sites and MSAC’s own Facebook page to identify emerging and click on ‘Contact Us’. common themes, discussing them and passing concerns onto the Board. For the coming year, we’ll focus on developing an education program for doctors in order to increase the likelihood of an earlier diagnosis of multiple sclerosis for people Disclaimer: Information and articles contained with the disease and examine the impact of the National Disability Insurance Scheme. in Intouch are intended to contain useful and accurate information of a general nature for the We wish you and your family a happy and healthy festive season. reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and Andrew White, Chair, MSAC Victoria readers must seek their own medical or legal advice as might be appropriate. Rob de Ridder, Chair, MSAC NSW Advertising disclaimer: Multiple Sclerosis Limited does not endorse any one product or service over GET involved – Contact MSAC another; nor do we receive any commission on Email: [email protected] • Telephone: (03) 9845 2794 sale of items. Consumers are encouraged to discuss the options for exchange or return at the time of purchase, with a specific supplier, because Multiple Sclerosis Limited is not liable in the event the product is not satisfactory. › Contents © Multiple Sclerosis Limited 2014 3 News HEALTH & WELLNESS 4 My story: Chelsea Rivett 8 Recognising cognitive issues 12 NDIS update 14 Events LIFESTYLE www.facebook.com/msgetinvolved 10 2014 MS Go for Gold MS COMMUNITY Scholarship winners twitter.com/msgetinvolved 5 MS Community: Inspiring bequests FUNDRAISING www.pinterest.com/msgetinvolved 6 Volunteers: Thanks for your help 13 MS Mega Swim dates instagram.com/msgetinvolved 7 Community fundraising 2 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 3 NEWS Cycling stars, Brad McGee and Ben Kersten. › MS Gong campaign BY the time you read this, our 2014 MS Sydney to the Gong Bike Ride will be over. This cycling event is the largest mass participation event on the NSW cycling calendar and one of our key fundraising events. Cyclists chose to ride either the long 90-kilometre route from Sydney Park, St Peters, or a shorter 58-kilometre course from Engadine. And, we couldn’t hold the event without the help of some 400 volunteers who turned up early on Sunday 2 November to put out the signs along the route and organise marquees and water supplies to ensure that riders would be made comfortable at the rest stops. At the end of September, Carol Cooke, AM, announced Cycling greats and MS Gong Ride Ambassadors Brad she would ride. Carol is a well-known member of the MS McGee and Ben Kersten were our special guests at the community and a Paralympic Gold Medalist, a World Cycling corporate breakfast held in August to kick off the campaign Champion and 2013 Victorian Cyclist of the Year, beating to raise $3.8 million. Cadel Evans and Simon Gerrans. Carol agreed to head up It was held at the Menzies Hotel, in the Sydney CBD, and Team MS. attended by about 120 riding enthusiasts. The breakfast was We were also pleased that strong fundraising teams supported by ride sponsors QBE and SBS TV and included such as SBS BA Cycling, Soft Cogs and Sylvania BMW other special guests, former Sydney Swans player Jared Top Raisers were battling it out for the top spot. The Crouch and Olympic and Commonwealth Games champion winning teams and high-fundraising individuals will be cyclist Kate Bates. SBS news presenter Ricardo Goncalves announced on 1 December. acted as the master of ceremonies. To see how the ride went, go to www.msgongride.org.au › Progressive MS research › MS Readathon turned 35 T HERE are more than 1 million people in the world living with a progressive form of multiple sclerosis and recently the International Progressive MS Alliance was formed to invest funds into researching the condition. This global initiative brings together the world’s leading experts in multiple sclerosis and is coordinated by the MS International Federation. It includes MS Research Australia and similar organisations in other countries. The alliance recently awarded its first round of 22 research grants to investigators in nine countries. The projects will be directed by scientists at leading Stephen Papadopoulos research institutions worldwide and includes Australian (at left), Will Kostakis and students from Kincoppal- recipient, Dr Steven Petratos from Monash University. Rose Bay, School of the This first round of funding is the start of an ambitious Sacred Heart. program that will see a total of €22 million invested into progressive multiple sclerosis research over the next six years. SOME 3,500 people signed up for our annual MS Go to www.msra.org.au/finding-answers-progressive-ms Readathon, which turned 35 this year. The participants came from Victoria, NSW, ACT, Queensland and Tasmania and raised more than $260,000. Encourage friends to subscribe now! The first MS Readathon was held in 1979 when If you’re reading Intouch, it’s most likely because you Malcolm Fraser was Prime Minister of Australia, and this have subscribed to it. Thank you! But some people are year many parents who took part then registered their not aware that if they want to keep receiving Intouch for children to take part this year. free we need their contact details, so encourage your Three decades later, students at Sydney’s Kincoppal nearest and dearest to subscribe. Primary School hosted a party to celebrate the 35th Just go to ms.org.au or call MS Connect on 1800 year. More than 350 students took part in the event 042 138. And remember, if you want all the news, you which included a webcast from their school auditorium also need to request to get the Intouch eNewsletter and presentations from our MS Ambassador Stephen which we send via email every month. Your next printed Papadopoulos and Will Kostakis, a Penguin Books Intouch magazine will arrive by post in March. Australia children’s author. But the star was Bosko, our MS Readathon mascot. 2 intouch spring/summer 2014 www.ms.org.au www.ms.org.au spring/summer 2014 intouch 3 MY STORY › Better than ever Chelsea Rivett is stronger and fitter thanks to being diagnosed with multiple sclerosis. IN 2009, Chelsea was holding down a part-time job at Telstra ahead. “I was determined to complete it even if I and raising boys aged 18 months and four years when she had to shuffle.” experienced her first symptoms. “I was sleeping a lot and felt As it turned out, she finished the circuit in a respectable numb along my left side from my head to my toes,” Chelsea time of two hours and 28 minutes. “The last few kilometres says. “I also had problems with my vision and hearing.” were a real struggle but I felt so proud of myself when I ran It didn’t take long before Chelsea, now 33, was diagnosed onto the MCG.