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From our CEO

World MS Day – held on May 30 each year – was a memorable one. For me, four events stood out. 

MS Employment and Workforce Survey: We commissioned a major survey involving more than 500 responses from people living with MS and another 1,000 from the general community. This survey – the first of its kind – was released for World MS Day 2022 under its global ‘Connections’ theme. The results indicated that – despite some positive findings – too many workplaces are still failing people living with MS.  Half of people living with MS reported missed work opportunities and more than a quarter were uncomfortable in the workplace because they felt people labelled them. The results attracted significant attention across television, radio, print and online media, helping to generate conversations that have raised awareness among employers and drawn attention to resources and services available to assist both employers and employees to create more positive and productive work environments. It also helped us get our message across – many employers need to go further, faster. 

The May 50K: World MS Day came right at the end of our most important research fundraising event of the year, the iconic May 50K. As part of my contribution, I ran my first ever marathon. It was slow. It was painful. But I got it done – and I did it for my cousin Claire, who has primary progressive MS, and my niece’s partner, Joseph, who has relapsing remitting MS. I was able to finish my May 50K on a high, taking part in MSL’s fabulous Walk Run + Roll event in Canberra on May 29, running 10k around Lake Burley Griffin with my regular running buddies – the Berlin Boyz – and Dr Jo Lane, a terrific MS researcher at the Australian National University. Thank you to the thousands of participants, fundraisers and donors. All the work we do and the research we support would not be possible without you. Next year, I am hopping back on my bike, adding two amazing events to my May 50K participation – MSL’s Gong Ride and MSQ’s Brissie to the Bay Ride. Training starts as soon as the weather warms up! 

Global MS Brain Health Award: We learned in late May that we had been short-listed for the inaugural Global MS Brain Health awards in the patient organisation category. The other nominees included an MS service in the US and the Italian MS Society and its Research Foundation. I was up at 2:30am on May 27 to take part in a global online award ceremony, hubbed out of London. And it was quite thrilling – even in the small hours of a Friday morning – to be announced as the winner. The award recognises the work we have done over the past five years to champion systemic improvements in health, disability, aged care and social services to promote brain health and the objectives of the Brain Health: Time Matters in MS Report, launched in 2015. 

Menzies MS ‘Research with Connections’ Symposium: I was delighted to take part in the MS research symposium in Launceston organised by the MS Research Flagship at the Menzies Institute for Medical Research. With our MSA President, Associate Prof Des Graham as the MC, the event was engaging, lively and inspiring, showcasing the work undertaken at the Flagship. But the event was more than that – it also highlighted the effective partnership between the MS researchers and people living with MS, their families, friends and carers. The energy in the room was palpable, reflecting what can be achieved when the research community works hand in glove with the people it serves. A great way to round out my World MS Day activities. 

Connie The May 50K story

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Connie The May 50K story

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From our CEO