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Unfinished business: global collaboration, NDIS reform and securing a greater funding footprint

27 March 2024

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Associate Professor Des Graham was elected unopposed for a second and final term as MS Australia President and Chair at the 2023 Annual General Meeting held on 28 November 2023.

We sat down with Des to discuss the three key areas he wishes to progress during his term as Chair, his plans for succession, and the motivation and thinking regarding his decision to serve only two years of the three-year term.

Associate Professor Des Graham boasts a proud record of supporting those not in a position to advocate for themselves. That drive in pursuit of social justice was recognised with a Human Rights Award in 2002, well before he himself was diagnosed with MS in 2009.

“I’ve always possessed a willingness and a desire to actively pursue the social justice agenda without being radical. And now, as a person with MS, I’ve got a knowledge bank and lived experience insight that others don’t have, and I think that is important.

“And when I combine that with my career and the skillsets that I acquired over 25 years as a clinician, as a bureaucrat actively involved in the development of the National Disability Insurance Scheme and the Rudd Government health reforms, I think that my background and passion fuels my ambition to continue to contribute the MS community.”

Des has identified three key areas he wishes to see a continued focus over the next two years, building on the strong record of success in recent years.

The first of those is to further cement MS Australia’s place as a leading partner in international collaborative research efforts – chiefly through the establishment of research prevention platform to End MS.

“We’re incredibly proud to currently be in discussions with Canada about jointly leading those efforts. And of course, what’s most exciting is the promise this work holds to move us faster towards a cure.”

Des is also determined to increase MS Australia’s funding footprint, to deliver a consistent funding source, and in particular, additional Commonwealth Government MS research investment.

“One of our most important roles at MS Australia is to advocate for Governments to invest in critical MS research. And that priority remains unchanged. And notwithstanding our record of success in this space, I believe we can attract and consolidate a bigger and more stable funding footprint over the next two years.”

Lastly, Des is determined to build on MS Australia’s successful efforts to realise a better National Disability Insurance Agency for Australians living with MS.

“I am incredibly pleased to see the impact MS Australia has already had in advocating for changes that would address the current failings of the NDIS. Together with Neurological Alliance Australia (NAA) chaired by MS Australia CEO Rohan Greenland, MS Australia has campaigned publicly, visibly and successfully for changes that would deliver better access and outcomes for Australian with MS that require access to the NDIS.

“Our advocacy efforts do not end with the handing down of the NDIS Review’s final report. We stand ready to work with the Commonwealth Government to see the Review’s recommendation’s implemented, and to continue to work with the National Disability Insurance Agency to see our ambitions for the establishment of a Neurological Advisory Panel embedded within the NDIA fully realised.”

Des Graham is proud of his achievements and contributions to MS Australia to date.

“Others will judge me regarding my strengths and the things I have delivered. For me, the most rewarding achievement to date has been our efforts to bring the MS community together. Not only the successful union between MS Australia and MS Research Australia but also the strengthening of the relationships with and between the state and territory MS Member Organisations MS Plus, MSWA, MS Queensland, and MS SA and NT.

“At the time of the consolidation there was great concern about what would happen to research. And I am proud that not only did we demonstrate that we are good stewards; we actually gave more hope to more people, people living with MS and researchers alike because we invested more in research.

And what of Des’ future plans?

While not quite ready to hang up his hat, Des does have an exit strategy firmly in place, and will complete only two of his three-year term.

“I wanted to provide MS Australia with a reasonable exit plan and to allow for succession planning and a smooth transition for the in-coming Chair.

“I enjoy working with our CEO, Rohan and I recognise we have a great and very capable staff team at MS Australia. I don’t believe the momentum we have built up would be well served by my leaving at this juncture.

Des also has compelling personal motivations for vacating his role in two years.

“I’ve got a couple of grandchildren now who have made an enormous difference to my wife and I.  The grandkids are only six months old but they have enriched both of our lives. For me, being a granddad is an amazing experience.

“And over the last 12 months, I have experienced my MS symptoms more now than ever before. So it’s important to me that I give myself the best opportunity to go off and spend quality time with my wife, my children and my grandchildren.

“When I complete two years of my current three-year term that will conclude all my active roles within the MS community. I will retire. I will of course watch from the sidelines with enormous interest.

“I expect there may be times when I am enormously frustrated, and at other times incredibly encouraged by what will be happening in the MS sector.

“But regardless, I hope I have made a contribution to a solid foundation that can be built on and leveraged for the good of the Australian MS community for many years to come.”

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Unfinished business: global collaboration, NDIS reform and securing a greater funding footprint