MEMBER & CLIENT SERVICES

MEMBER & CLIENT SERVICES Welcome to the Winter Edition of our Member & Client Services Bulletin. The cold weather is definitely here but spring is on its way. “The colour of springtime is in the flowers; the colour of winter is in the imagination.” – Terri Guillemet On Thursday, 6 July we held our 2023 Client Forum at the Telethon Speech and Hearing Centre in Wembley. We had a great turnout for this event, where Clients were provided updates on the latest research and trials underway from our research partners at Perron Institute and Edith Cowan University. We also UNRAVELLING THE MYSTERIES OF MULTIPLE SCLEROSIS: A GROUNDBREAKING GENETIC BREAKTHROUGH As featured on our front page, heard from our own clinicians World MS Day took place on 30 May and we held a ‘paint and sip’ event at our Butler, Bunbury, Rockingham and Wilson sites. It was a fantastic day where our Clients, carers and staff came together to raise awareness for MS and to show off their painting talents. While there were quite a few talented artists, I was not one of them! However, it was a great day with lots of fun and great time spent sharing stories and making connections. The artwork will be put together and displayed at our centres and we are looking forward to seeing it all pulled together. Thank you to all involved in our World MS Day working group and to our wonderful Events and Outreach team who did such a good job organising this activity. who provided information on new services available through our Physiotherapy and Occupational Therapy teams. This annual forum provides our Clients with the opportunity to interact and ask questions for more insight across research and our services. If you were not able to make it to the forum, you can review the presentations on our MSWA YouTube Channel. Scan the QR code to view. As we close out on another financial year, the NDIS has now set the budgets for the year ahead. We will be watching closely on what changes will be implemented by Minister Bill Shorten following the NDIS review. We are hopeful that we will see some positive action. On page 8, MSWA Manager Client Engagement Geoff Hutchinson breaks down the ‘What we have heard’ report released by the NDIS in June, following the review’s consultation period. A key issue which remains a challenge across the disability sector – and indeed many other sectors across Australia – is workforce staffing shortages. The challenges are not going away any time soon, and the focus for MSWA and our peers is to attract and retain good people in the disability sector. Despite these challenges, MSWA has achieved some great outcomes, including redefining our Purpose, strategy and values, and the implementation of new systems, processes and services to better support our Clients. I would like to thank our dedicated staff for their hard work and commitment over the past year, and our Clients for your patience and understanding as we navigated these challenges. As always, your feedback is important to us. If you have anything you would like to share, please reach out to us via feedback@mswa.org.au or call 6454 3173. NICOLA WASHINGTON CHIEF CLIENT OPERATIONS OFFICER Multiple sclerosis (MS), a complex neurological condition affecting millions worldwide, has long perplexed medical researchers seeking effective treatments. However, there may be hope on the horizon as the Perron Institute, in collaboration with an international study, achieved a major breakthrough in MS research: the identification of the first genetic marker associated with MS severity. This remarkable discovery not only advances our understanding of the disease, but also has the potential to revolutionise long-term disability treatments for those living with MS. Published in prestigious journal Nature, the groundbreaking study involved an impressive collaboration of over 22,000 individuals with MS from across the globe. Under the leadership of Professor Kermode, spearheading this activity Demyelinating Diseases Research at Perron Institute and the Centre for Molecular Medicine and Innovative Therapeutics at Murdoch University, the research team also included Dr. Fabis-Pedrini, a Senior Research Fellow funded by MSWA. Both distinguished researchers have been acknowledged as coauthors from Western Australia for their remarkable contributions to this international study. Excitement abounds in the scientific community as Professor Kermode shares his enthusiasm for the results, stating that the genetic marker discovery has flung wide open the door to understanding the intricate mechanisms underlying MS. This unprecedented insight paves the way for developing treatments that can significantly enhance recovery and halt disease progression, ushering in a new era of hope for MS patients. Dr. Fabis-Pedrini echoes the sentiment, emphasising the significance of identifying the genetic variant linked to MS severity. This crucial advance not only holds potential for new drug discovery, but also aims to preserve the wellbeing of people living with MS, marking a major stride towards improving the lives of those affected by the disease. The latest data underscores the far-reaching effects of neurological conditions on people's lives and serves as a poignant reminder of the need for continued dedication to research and fundraising efforts. The commissioned report by MS Australia reveals that 33,335 Australians were living with MS in 2021, with 3,040 individuals based in Western Australia, indicating an increase from 2017 figures. This growing prevalence highlights the urgency of MS research and support. MSWA remains resolute in its commitment to empowering people to live their best lives and providing the best possible support. Over the past decade, MSWA has contributed an astounding million to research, bolstering hope for advancements in MS treatments. MARIANNE GREEN MSWA SENIOR MARCOMMS OFFICER (BRAND) 6 7