Welcome to The Raw Nerve – the official Podcast of MS Australia – a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community; those living with MS and their families and carers, together with leading clinicians, researchers, and advocates. www.MSAustralia.org.au/podcast
In this episode of The Raw Nerve , Host Jeremy Henderson, Head of Advocacy for MS Australia, and Co-Host Sharlene Brown , Chair of the MS Australia Awards Committee, spotlight the 2026 MS Australia Awards and remarkable people driving change, compassion and progress across the Australian multiple sclerosis (MS) community. As nominations open for the 2026 MS Research Award and MS Advocacy Award, Jeremy and Sharlene, who has lived with MS for 24 years, speak with 2025 MS Australia Awards recipients about recognition, why nominations matter, and how the awards highlight quiet achievers whose work uplifts, empowers and inspires people affected by MS. Guests include Belinda Bardsley from Austin Health , 2025 MS Advocacy Award recipient, who reflects on her passion for MS nursing , early education and support after diagnosis , the Back on Track resource, Foundations of MS Nursing Course and equitable access to MS nurses . Professor Bruce Taylor , 2025 MS Research Award co-recipient , discusses decades of research into MS , consumers’ growing role in research and the possibility of making MS preventable. Professor Helmut Butzkueven , also a 2025 MS Research Award co-recipient , shares how data, clinical care and the MSBase Registry are improving treatment decisions and outcomes for people with MS. Jan Miles, representing the Miles family and Team Walk for Jess , reflects on receiving the 2025 John Studdy Award and the family’s grassroots fundraising and awareness in Queensland. Together, the conversation highlights the power of recognition, the strength of the MS community, and the many ways people contribute through research, advocacy, nursing, fundraising, volunteering and lived experience. Our guests talk about giving back, the significance of their awards, and how you can nominate, recognise and applaud someone you know for their contributions. The MS Australia Awards spotlight people driving change, compassion and progress across the MS community. From researchers, advocates, volunteers and carers to longtime champions whose impact spans a decade or more, the awards recognise individuals, many living with MS, whose efforts uplift, empower and inspire. To nominate someone making a meaningful difference for the 2026 MS Australia Awards, complete the online form on our website by Sunday 6 September 2026.
In this extended episode of The Raw Nerve, Host Jeremy Henderson is joined by guest Co-Host Lisa Montague, Raw Nerve Producer and Public Relations Manager for MS Australia, for a warm and wide-ranging conversation with acclaimed Sydney author Elizabeth Lancaster . Elizabeth’s new memoir, 'Bounty: A Memoir of Friendship, MS and the Dog That Changed Everything ', follows her award-winning debut 'Marzipan and Magnolias ', which explored her relationship with her mother and the onset of her multiple sclerosis (MS). In 'Bounty', in which she is known as Libby, Elizabeth takes her story in a new and uplifting direction, reflecting on how a spirited rescue dog helped draw her back into the world. No two people experience MS in the same way, and so too everyone finds strength in their own way, as Elizabeth’s new book attests. Through Bounty the dog, we learn about MS and conversely, how dogs sometimes need to learn to be patient and considerate of their human companions. Told with candour, humour and tenderness, 'Bounty' explores friendship, illness, disclosure, identity, care, community and the restorative power of connection. In this episode, Elizabeth talks about writing through and about chronic illness, the emotional realities of MS, and the ways human and animal companionship can offer support, patience and unexpected joy. The conversation also touches on MS experiences and themes including symptoms , relapsing remitting MS , relapses , progressive MS , lifestyle changes, travel , accessibility, family, friends and carers , as well as the joys and challenges of dog ownership and the community found in local dog parks. Whether you are living with MS, supporting someone who is, or simply interested in a moving story about resilience, friendship and the bond between people and dogs, this episode offers insight, warmth and plenty to reflect on. For helpful MS contacts in your local area, visit our Support and Services page and explore MS Australia’s Lifestyle Guide for people living with MS.
In this special episode of The Raw Nerve marking International Men’s Health Week 2026 (known in Australia as Men’s Health Week ), host Jeremy Henderson speaks with Bruce Frost and Andrew Holt from Narooma and Pambula respectively, on the stunning far south coast of New South Wales, about friendship, community, the great outdoors and living with MS. Diagnosed on the same day in 2001, Bruce and Andrew reflect on how mateship, active living and staying connected to their local communities helped shape their journeys with multiple sclerosis . From surf lifesaving and the George Bass Surfboat Marathon to mental health, resilience, bee keeping, the building industry, helping others and adapting to change, they share an honest and uplifting conversation about finding purpose, positivity and support through life’s challenges. Together, they discuss the importance of openness, staying active, their beautiful coastal surroundings, supporting and leaning into one another and maintaining strong social and community connections, particularly for men navigating health challenges. Our guests also talk about MS symptoms ; accessible dwellings, fixtures and fittings, the MS Readathon and provide helpful advice for others diagnosed with MS. Running from Monday 15 to Sunday 21 June, visit this additional Men’s Health Week Australia site for further details. For those living with MS, please reach out to your neurologist, MS nurse, or GP for advice and support. Visit MS Australia’s Support and Services page for helpful MS contacts in your local area, including MS Plus in New South Wales and explore our new Lifestyle Guide .
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 Plus George Pampacos, Chair, MS Australia Meaghan Osborne, President, MS Nurses Australasia Rohan Greenland, CEO, MS Australia Useful links: Back on Track MS Australia’s Living Well with MS Lifestyle Guide Local MS Contacts/Support and Services
In this special episode of The Raw Nerve , we speak with Jen Willis after her historic Mount Everest summit. As the first Australian living with MS to reach the top of the world, Jen speaks candidly about the mental and physical demands of the climb, the support network that helped make it possible, and how living with MS shaped the resilience and perspective she brought to the mountain. Useful links: Jen’s summit day Everest 2026: The Climb Beyond the Summit
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 matter How the new guidelines may reduce delays in diagnosis Why earlier MS diagnosis can improve long-term outcomes For 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 . Guests Professor 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 episode transcript is unavailable at this time. Today’s episode spotlights the essential topic of continence, examining its effect on quality of life, including for people living with multiple sclerosis (MS) . We feature an engaging conversation with Continence Health Australia and a powerful personal account from a Lived Experience Expert Panel (LEEP) member and share practical tips and resources . With World Continence Week 2026 (June 15–21) on the horizon, our episode highlights this important yet often overlooked issue. Many Australians—those with MS included—face bowel or bladder challenges during their lives. Continence means managing bladder or bowel function; incontinence is losing this control. While this is a common symptom for people with MS, the right resources and support can make a healthy, active life possible. Guest host Dr Tennille Luker, MS Australia’s Head of Research , outlines typical bladder and bowel problems for people living with MS , the underlying causes, and steps to take when these concerns appear. Jim Cooper , CEO of Continence Health Australia, offers ways to improve life for those managing continence issues and details the popular National Public Toilet Map. Anne Cooper , a LEEP member from Western Australia, shares her personal journey with continence, her connection to our Member Organisation MSWA , management strategies including catheters, and how humour has played a vital role. Our panel discusses the high prevalence of incontinence in Australia (over seven million people affected), living with MS and continence concerns, the importance of plentiful, accessible public toilets, how continence can impact sleep, common misconceptions and stigma, community and family support, innovative campaigns like the Great Dunny Hunt , and why early recognition and a multidisciplinary approach matter. For those living with MS with new or ongoing bladder or bowel symptoms, please reach out to your neurologist, MS nurse, or GP for advice and support. Visit MS Australia's Support and Services page for helpful MS contacts in your local area and explore our new Lifestyle Guide . The Continence Health Australia helpline is free and confidential, their 2026 National Conference includes a Community Event in Melbourne on 16 May, and the National Public Toilet Map is a fantastic resource for accessible facilities across the country.
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 funding How exercise benefits people living with MS and the community The role of community and teamwork in fundraising success Research priorities and breakthroughs in MS, including EBV (Epstein-Barr virus) and progressive MS trials Personal stories of MS diagnosis, advocacy, and participation in the May 50K and strategies for fundraising New innovations and incentives for May 50K participants MS Australia’s Lived Experience Expert Panel You 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 two of an interview with Stephen Crawford, a Canberra-based artist and musician who lives with multiple sclerosis (MS). In part one, Stephen shared 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 second part, Stephen discusses the intersection of MS and his art, and his plans for how he hopes to continue to educate and inform others. He introduces us to his art practice and methodologies, and where it all began, his painting journey, and what his artworks represent. He shares many references to popular culture and their link to MS, and colourful analogies to help describe what is going on inside his body. Stephen also talks about MS symptoms , his love of storytelling, the importance of fundraising for MS research , and advice for others newly-diagnosed with MS. 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. 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
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
Join us for a special episode of the Raw Nerve Podcast as we celebrate excellence in MS Australia research, showcase exciting projects from our most recent MS Research Grant Round, and discuss the need for greater government investment in neurological research. MS Australia has invested millions into funding and facilitating MS research in Australia and around the globe. Outside of government, we are the largest funder of MS research in Australia, having invested over $75 million to date. In this episode of the Raw Nerve podcast we take you to Parliamentary Friends of MS event at Parliament House Canberra. You’ll hear from Parliamentary Friends of MS Co-Chairs Senator Wendy Askew and Senator Deborah O’Neill and explore MS Australia’s research program with Dr Tennille Luker, Head of Research at MS Australia. Member for Griffith, Renee Coffey MP speaks about the value of MS research through the lens of lived experience and political representation. And Dr Monique Ryan, Independent Member for Kooyong discusses the critical importance of medical research and the need to unlock and invest more Commonwealth funding. Useful links: MS Research Grants Announcement
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 .
Recorded live at MS Australia’s 2025 Progress in MS Research Conference in Brisbane, Queensland, MS Neurosciences Nurse practitioner Jodi Haartsen ’s brain health and self-care focused talk left audience members deeply moved and inspired. Moving into a new year and marking the first Raw Nerve Podcast episode for 2026, we are pleased to share Jodi’s brilliant Community Day Keynote and her helpful tips for self-care, being kind to self and setting yourself up to live well with multiple sclerosis (MS) or support a family member or friend with MS. Over 25 years of working alongside people living with MS, one truth has become clear to Jodi - brain health is about far more than medication or MRI scans. It’s about the everyday choices, connections, and mindsets that shape how people live well with their condition. In this session, Jodi shares practical, evidence-based insights on what truly supports brain health, drawing on both science and the lived experiences of patients and carers. Through real stories and simple strategies, she explores how small, meaningful actions - from movement and mindset to sleep and social connection - can protect and strengthen the brain across the MS journey. This is a conversation about empowerment, not prescription - and about how every person can take small steps toward better brain health and self-care, starting today. Jodi understands that MS asks a lot of those living with the condition and presents many hurdles but reassures the audience that support is close at hand. Warm, engaging, and down to earth, Jodi discusses setting up your environment to create the best and strongest version of yourself, why self-talk and strong mental health matters significantly, tips to gain emotional strength and optimise wellbeing, alongside many other pearls of wisdom and takeaways. 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. Our biennial Progress in MS Research Conference is Australia’s leading event exploring innovative research into the causes, prevention, improved treatments and ultimately a cure for 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.
Today, we explore the new consensus recommendations to guide best practice management of multiple sclerosis (MS) in Australia and New Zealand , helping health professionals in these countries navigate a vastly changed and expanded MS treatment landscape. As reported earlier this year , this new resource aims to help people living with MS and their care teams make informed decisions about treatment throughout the different life stages of MS. Led by Monash University, it was developed by a working group of the Australian and New Zealand Association of Neurologists , including MS Australia and our Member Organisation, MS Plus . The lead authors join us to unpack the resource and share key takeaways, including the principles of starting therapy, treatment selection, pre-treatment tests, and monitoring MS activity during treatment. Additionally, indications for switching and the literature around discontinuing therapy, safety measures, and MS treatment in circumstances like pregnancy, MS relapses, and symptoms. Also, aspects of MS management beyond medication treatments, including allied health professionals and lifestyle factors like a healthy diet and regular exercise. Also on the panel, a person with MS shares aspects of her lived experience, treatment journey, and interaction with the new consensus recommendations. This concise resource to optimise patient care is available from the Medical Journal of Australia website as Part 1 and Part 2 . A plain language summary and an infographic are also available. Our panel encourages MS community members in Australia and New Zealand to read and share the new consensus recommendations with their healthcare teams. The resource supplements MS Australia's new Lifestyle Guides for people living with MS and health professionals , launched on World MS Day 2025. Host: Dr Julia Morahan - Deputy CEO, MS Australia Guests: Senior author: Associate Professor Mastura Monif - neurologist and researcher from the Monash University School of Translational Medicine and head of Alfred Health’s Neuroimmunology Service | The Monif Group Co-author: Associate Professor Douglas Johnson - Head of General Medicine and Infectious Disease Physician at the Royal Melbourne Hospital First author: Dr Jessica Shipley - PhD candidate, School of Translational Medicine, Monash University and MS and Neuroimmunology Fellow at Alfred Health Lived experience of MS: Researcher, Associate Professor Darshini Ayton - School of Public Health and Preventive Medicine, Monash University
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.
In today’s episode, MS Australia Deputy CEO, Dr Julia Morahan and Head of Research, Dr Tennille Luker report on and unpack ECTRIMS 2025 – the world’s largest MS treatment and research congress. The recent event attracted over 9000 international delegates and serves as a crucial platform for researchers, clinicians and healthcare providers to collaborate on, explore and advance novel life-changing research and treatment options for people with MS. Julia and Tennille contextualise and share their perspectives on the most exciting developments, clinical trials, BTK (Bruton's tyrosine kinase) inhibitors, updated diagnostic criteria and more, presented at ECTRIMS 2025 under the theme of ‘a new era of precision’. The discussion also reflects on what these advances mean for the future of MS care and the people it impacts. Other focal points are the recently updated McDonald Diagnostic Criteria , research which could help provide even more personalised care and better predictions about disease progression, cutting-edge technologies, including AI and emergent therapies. Additionally, the episode spotlights paediatric MS, the exciting ‘late breaker’ sessions where some of the newest research findings are presented, and the patient community day. Tune in for an in-depth look at how global experts are working together to shape the future of MS care and research. For those who would like to watch the Patient Community Day sessions online, here is the link .
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.
Today’s episode spotlights older people living with MS and the important issues they face, as we mark International Day of Older Persons 2025 which is celebrated annually on the first of October. We hear from MS Australia Lived Experience Expert Panel (LEEP) members, Vanessa Fanning and Gavin Harper, who represent the important cohort of older people living with multiple sclerosis. International Day of Older Persons is dedicated to acknowledging the contributions of older people and addressing issues that affect their lives. This year’s theme is Older Persons Driving Local and Global Action: Our Aspirations, Our Well-Being, Our Rights. MS is the most common acquired chronic neurological disease affecting young adults , often diagnosed between the ages of 20 to 40 and affects both women and men. While no two people experience MS in the same way, everyone ages, so we wanted to talk about what it’s like to be an older person living with MS. Our guests discuss their diagnoses and lived experience with MS, navigating the aged care and NDIS systems, the important issues facing older people with MS, and their passion for advocacy. Today’s guests: Vanessa Fanning lives with Progressive MS, is in her 70s and was diagnosed with MS in 1999. Vanessa received a My Aged Care package which she surrendered after 12 months after it failed to meet her needs. Vanessa is deeply involved in research focusing on MS and engaged with the local MS Community in the ACT. Through her national and international roles, Vanessa has developed a wide and diverse network of people living with and affected by all forms of MS providing insight into the priorities and concerns of a range of people affected by MS. Gavin Harper has had MS since 1973. Over the past 50+ years he has experienced a wide range of symptoms which he thinks are quite typical of Relapsing Remitting MS (RRMS). Gavin has extensive project management, Board, committee, and governance skills plus 50+ years of lived experience with MS, while living in four different countries. Gavin is co-chair of MS Australia MS Member Organisation , MSWA ’s client co-design committee.
Today on The Raw Nerve we're taking you to Parliament House in Canberra for the Neurological Alliance Australia (NAA) Day of Action held on 4 September 2025 with over 100 members of the neurological community and Parliamentarians in attendance. NAA Chair and CEO of MS Australia, Rohan Greenland presented the government with a Blueprint designed to inform and guide the development of Australia's first National Action Plan for Neurological Conditions, with economic modelling that shows such a Plan could actually save Australia $7 billion a year. The Blueprint was developed by the Neurological Alliance Australia, working closely with people living with neurological and neuromuscular conditions, researchers, clinicians, industry, the World Health Organisation (WHO), and many others. Australia has funded national action plans for other major disease groups – cancers, cardiovascular diseases and mental health. But there is no national action plan for the estimated seven million Australians living with some form of neurological condition and it’s time. As our various speakers attest, a funded neurological action plan with clear goals and targets will save lives, improve quality of life and bring substantial economic benefits for the entire nation. Our guests on today’s podcast: Senator Wendy Askew , Co-chair, Parliamentary Friends of Multiple Sclerosis Nicole Gaupset , General Manager, Alexion Pharmaceuticals Rohan Greenland , NAA Chair and CEO of MS Australia Jack Rowland , person living with Becker’s Muscular Dystrophy
