The Raw Nerve

Join us for a special episode of the Raw Nerve Podcast as we celebrate the launch of an innovative MS Nurse-led resource designed to support Australians living with multiple sclerosis (MS) amid MS specialist nurse care shortages.MS Specialist Nurses or MS Nurses are an integral part of the multidisciplinary team of specialist healthcare professionals providing support, education, advice, and care for people with MS and their family and carers.Developed by MS Australia and MS Nurses Australasia, ’Back on Track’ was likewise developed by expert MS Nurses, drawing on their combined 140 years of experience working in MS, together with lived experience contributions from the MS community.Today we take you to the MS Plus Wellbeing Centre in Lidcombe, New South Wales, for the 29 May 2026 launch of ‘Back on Track’: a series based on the PhD research of Dr Therese Burke AM.In a panel session chaired by Katie Snell, MS Australia Policy Manager, you’ll hear from ‘Back on Track’ presenter and project lead, Registered Nurse, MS Specialist Dr Therese Burke AM and her fellow resource presenters, Registered Nurse, MS Specialist Belinda Bardsley and MS Nurse Practitioner, Tim O’Maley. Rounding out the panel is MS Australia Lived Experience Expert Panel (LEEP) member Rachel Fallis.The launch of ‘Back on Track’ marks World MS Day 2026, with this year’s global campaign once again focused on the theme ‘My MS Diagnosis: Navigating MS together’.The World MS Day ‘Diagnosis’ theme highlights the importance of timely, supported diagnosis and navigating the critical early stages of life with MS.With one in three Australians living with MS lacking access to specialist MS Nurse care, this innovative new MS Nurse-led video and audio resource is designed to empower and guide people through their unique MS journey.Other speakers:Rob McClay, Executive Manager, Strategy and Client Impact, MS PlusGeorge Pampacos, Chair, MS AustraliaMeaghan Osborne, President, MS Nurses AustralasiaRohan Greenland, CEO, MS AustraliaUseful links:Back on TrackMS Australia’s Living Well with MS Lifestyle GuideLocal MS Contacts/Support and Services

MS Australia Deputy CEO Dr Julia Morahan speaks with leading clinician researchers and MS experts Professor Helmut Butzkueven and Associate Professor Anneke van der Walt about the updated 2025 McDonald Diagnostic Criteria for multiple sclerosis (MS).The revised guidelines aim to diagnose MS earlier and more accurately, helping people access treatment sooner and improve long-term outcomes. The update represents a major step forward in care and quality of life. The panel explores why “time is brain” in MS care, how new MRI and eye imaging technologies are changing diagnosis, and what the updates mean for clinicians and the MS community.The discussion also highlights the global collaboration behind the criteria update, including the role of people living with MS in shaping the recommendations, and how research from the MSBase Foundation continues to influence MS care worldwide.This episode provides practical insight into one of the most significant advances in MS diagnosis and care in recent years and explores:Why the 2025 McDonald Diagnostic Criteria matterHow the new guidelines may reduce delays in diagnosisWhy earlier MS diagnosis can improve long-term outcomesFor many people, receiving a diagnosis brings clarity and relief. As echoed by members of MS Australia’s Lived Experience Expert Panel (LEEP), alongside clinical accuracy these updates help people move forward with confidence, access treatment earlier, and feel supported in their MS journey.Explore MS Australia's new Lifestyle Guide and for helpful, local contacts visit our Support and Services page. The revised McDonald Criteria will feature in the 2026 World MS Day campaign.GuestsProfessor Helmut Butzkueven is Van Cleef Roet Professor of Neuroscience at Monash University, Director of Neurology, Alfred Care Group at Bayside Health, Head of the Department of Neuroscience, School of Translational Medicine (Alfred Campus), Monash University, and Managing Director of the MSBase Foundation. He is co-recipient of the 2025 MS Australia MS Research Award.Associate Professor Anneke van der Walt is Director, MS and Neuroimmunology and Neuro-ophthalmology at Alfred Health; Head of the MS and Neuro-ophthalmology Group, Department of Neuroscience, School of Translational Medicine at Monash University; and Chief Operating Officer of the MSBase Foundation.

The May 50K is fast approaching and today we explore its impact on MS (multiple sclerosis) research, and how participants support important research advancements.Since launching in 2019, this fun and flexible fitness challenge for individuals and workplace teams has raised more than $25.5 million to support world-class research into the prevention, treatment and cure of MS.Each May, thousands of people in Australia and around the world walk, run, roll, swim 50 kilometres, or set their own goal or activity, to help leave MS where it belongs, behind us.In this episode, Raw Nerve host Jeremy Henderson speaks with three passionate May 50K champions and participants about the importance of community, exercise, and fundraising in the fight against MS.Today’s guests are Dr Fiona McKay, Deputy Head of Research at MS Australia, Sophie Drummond from our Member Organisation MS Plus and Campaign Manager for The May 50K, also Dr Amanda Kennedy, a member of MS Australia’s Lived Experience Expert Panel (the LEEP) and Lecturer in Marketing at The University of Sydney. Sophie and Amanda also live with MS.Key topics include:The significance of The May 50K event in MS research fundingHow exercise benefits people living with MS and the communityThe role of community and teamwork in fundraising successResearch priorities and breakthroughs in MS, including EBV (Epstein-Barr virus) and progressive MS trialsPersonal stories of MS diagnosis, advocacy, and participation in the May 50K and strategies for fundraisingNew innovations and incentives for May 50K participantsMS Australia’s Lived Experience Expert PanelYou will hear how to register for The May 50K 2026 and clock the kilometres, to help support life-changing research into the prevention, treatment and finding a cure for MS.Whether you are already signed up or simply curious about how movement can drive real change, this episode is a great source of inspiration to get involved.For helpful MS contacts in your local area, visit our Support and Services page and check out MS Australia’s new Lifestyle Guide for people living with MS.

On today’s Raw Nerve, we present part one of an interview with Stephen Crawford, a Canberra-based artist and musician who lives with multiple sclerosis (MS).Stephen shares with us his uniquely individual story – starting with his childhood in Scotland and moving to Australia in the 1980s – and many fascinating anecdotes, with his signature dark humour, resilience, and positivity.Stephen creates artwork to help people understand what it’s like to live with MS. In this first part, Stephen talks through his recent MS diagnosis, the process he went through, and life with a chronic illness. He also discusses symptoms, the impact of MS on his career and day-to-day work, and other elements of his life, dealing with adversity and various humps along his journey.No two people experience MS in the same way, and so too everyone finds strength in their own way, as Stephen’s story attests.If you listen carefully, you will hear that Stephen is drawing throughout the conversation. Below, we have included some of his artworks.In a future episode, Stephen discusses the intersection of MS and his art, as well as his plans for how he hopes to continue to educate and inform others.This episode includes mentions of injuries, medical procedures, and some dark themes in the context of the interviewee’s unique life journey.For helpful MS contacts in your local area, visit our Support and Services page and check out MS Australia’s new Lifestyle Guide for people living with MS.Stephen Crawford's Art

Today’s Raw Nerve episode explores the major new report: Multiple Sclerosis Prevalence and Health Economic Impact in Australia 2025.Released at MS Australia’s 2025 Progress in MS Research Conference, the report reveals that a record 37,756 Australians are now living with multiple sclerosis (MS) – a 13.3% increase in just three years since 2021.The report is the third major publication on the cost of MS in Australia, commissioned by MS Australia and produced by the Menzies Institute for Medical Research at the University of Tasmania. The primary data source is the Australian MS Longitudinal Study (AMSLS).Joining guest host Dr Fiona McKay, Deputy Head of Research at MS Australia are report lead author Dr Julie Campbell, Senior Research Fellow at the Menzies Institute for Medical Research, University of Tasmania; report author Professor Bruce Taylor, Neurologist and Academic Lead – also from Menzies and Dr Tennille Luker, Head of Research at MS Australia. Professor Taylor is also co-recipient of MS Australia’s 2025 MS Research Award, recognising more than 25 years of leadership in advancing MS research and improving outcomes for people living with the condition.We wanted to help listeners understand a bit about the report and what it all means, including the impact of MS on quality of life and employment, what might be contributing to the increased prevalence of MS, key findings and recommendations for improving outcomes for those affected by MS and the importance of sustained and rigorous MS research funding and response.For Dr Luker, the report is a clear, credible story of what MS looks like today in Australia: how people are affected, what MS costs and where the biggest gaps are and she shares many other key takeaways.Also mentioned today is the Global MS Prevention Initiative which MS Australis is co-leading along with MS Canada, the important role of MS Nurses, Brain Health, PLATYPUS and the National Disability Insurance Scheme (NDIS) and its Agency (the NDIA).Visit our Support and Services page for contacts in your local area and check out MS Australia’s new Lifestyle Guide for people living with MS.

A special episode of the Raw Nerve recorded live at MS Australia’s 2025 Progress in MS Research Conference in Brisbane, Queensland.Tune in to watch and listen to a wonderful panel of experts variously working in the multiple sclerosis (MS) space and living with MS, discuss symptom management and mental health.MS has many symptoms, which can be variable, unpredictable, and invisible to those around you. No two people will experience the same symptoms, and which can be a one-off occurrence, come and go or change in severity over time. MS symptoms can be experienced in different parts of the body, depending on which part of the central nervous system is affected.Many people with MS experience mental health conditions more often than the general population. Studies show that working with healthcare professionals, like your doctor, MS nurse, or a mental health specialist, can improve mental health and quality of life.Our biennial conference is Australia’s leading event exploring innovative research into the causes, prevention, improved treatments and ultimately a cure for MS.Running parallel with the scientific sessions, our community sessions provide research updates, information on local services and practical insights on living with MS to the general public.Chaired by Neurosciences Nurse Practitioner Jodi Haartsen, today’s guests are MS advocate and community leader Rachel Kerr and psychologist Dr Sally Shaw, both of whom live with MS, alongside MS Specialist Nurse and Nurse Practitioner Tim O’Maley and neurologist/clinician-researcher Dr Zara Ioannides. Click on this link for full bios.Visit our Support and Services page for contacts in your local area and check out MS Australia's new Lifestyle Guide for people living with MS, launched on World MS Day 2025.

In this powerful episode, we delve into the new Australian documentary, ‘Changing Track’, a non-fiction drama that follows three unique athletes on their journey to chase a Paralympic dream after trauma and disability forced their lives onto a new course. We are joined by the film's creators: Tristan Kenyon, Director and Writer, and Timothy Kenyon, Director of Photography, Writer, and Producer.The Kenyon brothers discuss the genesis of the project and their narrative choice to focus on the human stories and the "why" behind their subjects' passion, rather than just the medals or times. They share how they built trust to tell these deeply personal stories and their hope that the film inspires anyone facing a dark point in their life to ‘change track’ and find a supportive community.We also welcome Paralympic gold medallist and world record holder Emily Petricola OAM PLY, who was diagnosed with multiple sclerosis (MS) at age 27. Emily shares her initial nervousness and emotional vulnerability in revealing her journey with MS, how cycling became a vital part of her life and a golden opportunity to use her platform to shine a light on the often-invisible struggles of living with a chronic disease, and the collaborative and supportive relationship she built with the filmmakers.‘Changing Track’ is about more than sport; it’s a story about hope, community, and the resilience found on the other side of adversity.

On The Raw Nerve today, we spotlight MS carers and the important issues they face, as we mark National Carers Week 2025.Host Jeremy Henderson is joined by Lived Experience Expert Panel (LEEP) members, Rebecca Small and Chloe Colles, who represent the important cohort of people caring for family members with MS.While no two people experience MS in the same way, everyone needs support, and we want to talk about what it’s like to care for a family member living with MS.Today’s guests:Rebecca Small cares for a family member with MS and sees how it impacts on a daily basis. Working as an Occupational Therapist in particular supporting people with Neurological Conditions including MS, Rebecca understands how MS impacts functional capacity. Rebecca also has significant experience with supporting people with MS to remain at home, complete home modifications and use complex assistive technology alongside advocating for carer support to align with their goals.Chloe Colles is a Disability Support Service Manager with a large not-for-profit organisation in Tasmania, where she is leading the expansion of services into new regions with a strong focus on person centred support and sustainable growth. Prior to this, she held an Executive Officer role supporting residents with neurological conditions and brain injuries, where she developed her skills in executive leadership.Chloe brings professional experience from the National Disability Insurance Scheme, particularly in planning as a Local Area Coordinator. She has managed teams of support workers, overseen NDIS provider registration and auditing requirements, and delivered support coordination services.Alongside her professional career, Chloe is a carer for her mother, who lives with multiple sclerosis (MS). In this role, she has navigated the NDIS system firsthand — supporting her mother to access the scheme, connecting her with service providers, reviewing her plan, and advocating for her needs.With a deep passion for disability awareness and a strong commitment to supporting others, Chloe combines her executive leadership experience, professional expertise, and lived experience as a carer to bring a valuable perspective to her role as an MS Australia LEEP member.

Join us for a special episode on women’s health and MS, hosted by Dr Tennille Luker, MS Australia’s Head of Research, exploring diagnosis and lived experience, mental health, work and chronic illness, pregnancy, midlife, menopause and MS research.MS is the most common acquired neurological condition affecting young Australians and is three times more common in women than men. The reason for this is an enduring mystery of MS research and Dr Luker talks about some of the clues we have, to unravel this mystery.This year’s Women’s Health Week theme is ‘Say yes to you’ and we look at how some of the daily themes (every check matters, take the lead, heart smart, pain to power and be kind to your mind) relate to MS and are experienced by women living with MS.It’s important for women to stay up to date with health checks, arm themselves with the right knowledge and tools to get more out of health appointments and be aware of other health conditions that may intersect with MS. Seeking help for MS pain is vital and so is recognising that looking after your mind is as important as caring for your body. In the first instance, talk to your trusted healthcare team or contact your local MS organisation for support and advice. Also check out MS Australia’s new Living well with MS guide.Today, we’re speaking with three fascinating women living very different lives but with MS as a common factor.Our guests are:Samantha Seymour - Mental health counsellor and Psychotherapist from Newstart who lives with MS and works with women with MSSally Irwin - MS Australia Lived Experience Expert Panel (LEEP) member and Head of Data Change for HSBC Australia, facilitating the implementation of Regulatory and Procedural change as it relates to the bank’s usage and storage of data and who lives with MSAssociate Professor Vilija Jokubaitis - MS Researcher | Deputy Head of the Department of Neuroscience, School of Translational Medicine at Monash University and Neuroimmunology Genomics, Prognostics and Women's Health Group Lead, who is recruiting to her current project The Multiple Sclerosis Australian Women’s Midlife Years (MS-AMY) Study

The MS community is brimming with extraordinary people whose remarkable efforts inspire us all. Today on The Raw Nerve, we celebrate some of these outstanding individuals and discuss why and how to nominate someone special for the 2025 MS Australia Awards.We talk with the recipients of our 2024 Awards who have made incredible contributions for and out in the Australian MS community.You will hear about the prestigious John Studdy Award and our new Research Award and Advocacy Award, which shine a light on people doing wonderful things.Our guests talk about their passion for giving back, as well as the deep significance of their awards and you will hear how you can nominate, recognise and applaud someone you know for their remarkable contributions.The MS Australia Awards spotlight the amazing people, local heroes and those humble, ‘quiet achievers’ driving change, compassion, and progress across the MS community. From dedicated researchers, passionate advocates, volunteers, and carers to longtime champions whose impact spans a decade or more, these awards recognise individuals, many living with MS, whose efforts uplift, empower, and inspire. To nominate someone for the 2025 MS Research Award and/or the MS Advocacy Award, complete the online form on our website by Sunday 7 September.Our guests today are:Lynda Whitton – MS Australia 2024 John Studdy Award Winner from Bunbury, Western AustraliaProfessor Jeannette Lechner-Scott - Senior staff specialist and Conjoint Professor, John Hunter Medical Research Institute, MS Australia Board Director and MS Australia 2024 MS Research Award Winner from Newcastle, New South WalesMarianne Gaul AM - MS Australia 2024 MS Advocacy Award Winner, MS Plus Peer Support champion and enthusiastic participant and fundraiser for The May 50K from Tamworth, New South WalesSharlene Brown - MS Australia Board Director, Chair of the MS Australia Awards Committee (which includes the John Studdy Award) and Chair of the Advocacy CommitteeAll four have extensive and deep connections to MS and the MS community.

On this episode of The Raw Nerve we mark World Brain Day, an annual event observed on July 22, which aims to foster quality neurology and brain health worldwide.What is brain health for people living with MS? How can you keep your brain healthy?Our brain is the most complex organ in our body, allowing us to sense, feel, think, move and interact with the world around us. The brain helps us to regulate and influence many of our body’s core functions including those of the cardiovascular, respiratory, endocrine and immune systems. Many factors can affect our brain health even before we were conceived!Host Dr Fiona McKay and three experts discuss brain health and MS, their work and some exciting outcomes from research funded by MS Australia. We explore how to keep your brain healthy while living with MS, early intervention in MS, treatments and monitoring at different stages of life, progressive MS and some exciting new research to develop therapies to repair the brain.Having a healthy brain that functions well is important for people with MS, and our panel talk about some of the key recommended steps, including as outlined in MS Australia’s new Living Well with MS resource.Our guests are Dr Olivia Wills Associate Lecturer, Associate Research Fellow from University of Wollongong’s EatRightMS research group. A dietitian, Olivia recently completed her PHD on brain health and MS and led a study revealing 16 evidence-based recommendations to boost brain health for people living with MS. From Monash University, we have Dr Steven Petratos, a researcher in neuroscience and Head of The Petratos Group. Rounding out the panel is neurologist and MS researcher ⁠Dr Izanne Roos⁠ from the University of Melbourne. Izanne’s ⁠current MS Australia-funded project⁠, work and interest is early intervention with high-efficacy treatments for people living with MS (including for those with severe MS) and her work from ⁠MSBase⁠.Join us as we spotlight brain health and MS, early interventions, new research, new treatments and repairing the brain in MS, plus lifestyle recommendations for people with MS to maximise brain health.

Together with the broader sector, MS Australia is extremely disappointed with the recently released 2024-2025 NDIS Pricing Review.What is the Annual NDIS Pricing Review? What were we expecting or hoping for? What has been announced and why are we so concerned? What are the potential implications for people living with multiple sclerosis (MS), the wider disability community, our MS Member Organisations and allied therapy supports? What are we requesting and seeking from the NDIA and the Federal Government?In this episode, Raw Nerve host Jeremy Henderson, Head of Advocacy at MS Australia speaks with Magriet Raxworthy, CEO of Dietitians Australia, Dr Rik Dawson, National President of the Australian Physiotherapy Association, Melanie Kiely, CEO of MSWA one of MS Australia’s four Member Organisations and Rohan Greenland, CEO of MS Australia about the NDIS Pricing Review announcement, our response and reaction.We explore what the National Disability Insurance Agency’s Review announcement means for the panel’s respective organisations, the broader sector and to people who rely on these services. We discuss our position, where to from here and what the sector would like to see going forward.In essence, MS Australia is concerned by the decision to reduce pricing for essential therapy supports including physiotherapy, dietetics, and podiatry, to freeze prices for occupational therapy and speech pathology and to slash travel funding by 50%.These reductions along with no increases in pricing for level 2 and level 3 support coordination and plan management will put further pressure on our Member Organisations who deliver essential services to people living with MS and other neurological conditions. Our Member Organisations are already subsidising the delivery of services, proving many hours of unfunded support coordination and plan management. This latest pricing decision further threatens the viability of many providers, including our Members, who provide vital tailored disease specific services. MS Australia is calling on the NDIA to urgently consider the impacts of these pricing arrangements and to establish clear independent pricing including releasing the Independent Health and Aged Care Pricing Authority’s review of NDIS pricing. We also discuss the sector’s public facing campaign efforts mobilising the community including the Allied Health sector’s Change.org petition led by Australian Physiotherapy Association, Dietitians Australia, Australian Podiatry Association and Australian Psychological Society.The NDIS Pricing Review decision ultimately hurts the sector and the disability community who will no longer be able to access the vital services they require. The price is NOT right!