As we reflect on the milestones of MS Australia in 2023, I’m pleased to report that we have achieved significant progress in several strategically important areas. Here are just some of the exciting successes from the past year.
RESEARCH
In partnership with MSWA, we launched PLATYPUS, a revolutionary adaptive clinical trial for MS—the first of its kind in Australia. It marks a globally significant development toward finding effective treatments for progressive forms of MS and, importantly, giving hope to people with a condition with limited treatment options.
Recognising the critical importance of informed participation in clinical trials, MS Australia pioneered the TrialSmart online education platform, a groundbreaking initiative to empower individuals to be informed and engage in MS research.
To better understand the evolving landscape of MS in Australia, we commissioned a new prevalence and economic data report undertaken by the Menzies Institute of Medical Research, revealing a significant 30% increase since 2017. Beyond statistics, this equips us with invaluable insights to champion improved MS research funding and help bolster our advocacy efforts to secure better supports for all affected by MS.
MS Australia was announced as a partner in five successful grants into Epstein-Barr virus (EBV) in MS, totalling $10m of the $18m allocated by the Medical Research Future Fund (MRFF). The landmark funding for MS research by the MRFF was secured in 2022 due to our prior advocacy efforts.
ADVOCACY
We’ve been ramping up our advocacy efforts, including launching the MS Nurses campaign at Parliament House on World MS Day to elevate awareness and support for our life-changing MS Nurses. The campaign has already helped garner federal government support for a future MS Nurse pilot project.
Our engagements with the NDIS Review saw encouraging outcomes announced, which will ensure the NDIS better meets the needs of people living with MS. Our ‘Better NDIS for MS’ advocacy campaign saw 4.5 out of six priorities supported by the NDIS Review Final Report recommendations. We will continue to work with the government and the NDIS to see all six priority areas addressed in a meaningful fashion as the recommendations are implemented.
Our commitment to building more inclusive environments for people with MS saw MS Australia deliver 12 powerful policy submissions. Underlining the quality of these submissions; a Committee Chair described one as “excellent”, and our NDIS submissions received additional attention and discussion from the Department of Prime Minister and Cabinet. Furthermore, we were sought out for appearances before a review of carer legislation and an extended interview on the National Strategic Framework for Chronic Conditions.
PEOPLE LIVING WITH MS
In 2023, MS Australia deepened its commitment to embedding the lived experiences of the MS community into every endeavour. The establishment of the Lived Experience Expert Panel (LEEP) — a diverse group of people across Australia living with MS or caring for someone with MS — stands as a testament to our commitment to ensuring that the authentic voices of the MS community are in every decision MS Australia makes.
Our dedication to amplifying lived experience voices was further evident in the expanded scope of the Progress in MS Research Conference. By incorporating sessions run by the MS Community and tailoring scientific discussions specifically for people living with MS, we created a dynamic space that saw a record number of participants. The overwhelmingly positive response from both the MS community and researchers validated the establishment of the conference as a platform for shared insights and collaborative efforts moving forward.
Additionally, we introduced and executed an MS carer’s strategy — an essential initiative acknowledging the vital role caregivers play in the MS journey. This strategic effort actively implements a comprehensive framework that ensures holistic support for people living with MS.
EDUCATION AND AWARENESS
Our enhanced digital media presence, including the launch of ‘The Raw Nerve’ podcast, co-hosted by a legend in Australian radio ‘Ugly’ Phil O’Neill, has provided a powerful platform to share our mission and stories and has allowed us to amplify our reach and impact.
The production of our What is MS? video was a testament to the co-design process in creating a resource designed to explain the complexities of this often invisible disease. Through every stage of development, the invaluable guidance of people living with MS, researchers, and MS Nurses ensured a final product that serves as a valuable educational tool for both the general public and those newly diagnosed.
MS Australia’s commitment to education and awareness was recognised with a ‘highly commended’ accolade at the 2023 PRIME Awards for sustained excellence in brain health. This followed our win in the ‘patient organisation category’ in the MS Brain Health Awards in 2022.
As we prepare to go bigger and better in 2024, we must acknowledge that these achievements are a testament to the support and collective effort of our MS State and Territory Member Organisations and the entire MS Community. Thank you.
