The Raw Nerve

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 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 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 AustraliaGuests: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 GroupCo-author: Associate Professor Douglas Johnson - Head of General Medicine and Infectious Disease Physician at the Royal Melbourne HospitalFirst 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 SclerosisNicole Gaupset, General Manager, Alexion PharmaceuticalsRohan Greenland, NAA Chair and CEO of MS AustraliaJack Rowland, person living with Becker’s Muscular Dystrophy

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

MS Australia CEO Rohan Greenland sits down with Dr Lydia Makaroff, Chief Executive of the MS International Federation (MSIF), during her visit to Australia. Lydia shares insights from her first six months leading the MSIF.They explore the global challenges and opportunities in MS advocacy, including the importance of accurate prevalence data, capacity building in low-resource regions, and the push for early diagnosis. Lydia discusses MSIF’s role in convening international research efforts, integrating lived experience into decision-making, and supporting the WHO’s global action plan for neurological conditions.From grassroots volunteer-led organisations to large national bodies, Lydia highlights the power of collaboration and shared learning in the fight for a world without MS.

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.

Today on The Raw Nerve we spotlight our newly launched 2025 Incubator Grant round, which supports out-of-the-box ideas aimed at opening new directions in multiple sclerosis (MS) research. MS Australia has funded four exciting projects targeting MS research priorities – including causes and prevention, better treatments and cures via repair and regeneration of cells.Join us on the Raw Nerve, as we delve into these exciting new research projects and talk with three of the researchers about their work.Dr Laura Laslett from the Menzies Institute for Medical Research at the University of Tasmania is investigating whether smartwatches and the MySymptoMS app can effectively monitor sleep and symptoms in people with MS over extended periods. Dr Laslett is recruiting for participants and is keen to hear from people living with MS in Southern Tasmania via this link: Collecting better data on sleep in people with MS: Screening SurveyDr Monokesh Sen from the Charles Perkins Centre, The University of Sydney is investigating whether macrophage-derived extracellular vesicles (MEVs), tiny messengers released by immune cells, can support myelin repair in MS. Dr David Stacey from the University of South Australia is leading a world-first Australian study using DNA to identify a person’s genetic risk of developing MS to understand how their immune system responds to a common virus linked to the disease. And joining with us to help unpack this work and its impact and that our of our fourth Incubator Grant Recipient, Dr Alastair Fortune, from the Menzies Institute for Medical Research at the University of Tasmania: Are brain vascular cells dysfunctional in MS?, and to discuss the MS Australia research program, is MS Australia’s newly appointed Head of Research Dr Tennille Luker.Additional GlossaryMS Australia Brain BankMS WIRE - MS Australia’s monthly newsletterCentral nervous system - the brain, spinal cord and optic nervesPBMC - peripheral blood mononuclear cellsSize exclusion chromatography – technique used to separate molecules based on their sizeOligodendrocytes - the cell in the central nervous system that makes myelin

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.

A reading revolution, the MS Readathon has been empowering kids and bonding families since 1978 and has made a huge impact on awareness raising of and fundraising for multiple sclerosis (MS) and literacy.What is the MS Readathon? How does it work and make a difference? What do kids, their families and teachers think about MS Readathon? How can people participate?  In this episode, Raw Nerve Host Jeremy Henderson, Head of Advocacy at MS Australia chats with David Curd, CEO of MS Queensland, one of MS Australia’s four MS Member Organisations and Rachel Kerr, passionate MS Queensland and MS Readathon Ambassador and the recipient of MS Australia’s 2023 John Studdy Award about MS Readathon, an annual reading challenge aimed at raising funds for families affected by MS and as you’ll hear, other neurological conditions.We explore MS Readathon’s history, its impact on awareness of MS, its role in promoting literacy among children and instilling a love of books. David and Rachel share personal stories and insights on how MS Readathon fosters community connections and encourages participation from families and schools. They also discuss the exciting developments planned for MS Readathon 2025.A national event run by MS Queensland on behalf of MS Australia’s other MS Member Organisations MS Plus, MS South Australia & Northern Territory and MSWA, MS Readathon has impacted generations and for many is their first introduction to MS, is inclusive, allowing for various reading formats and encourages friendly competition among children.David tells us how fundraising efforts directly support those living with MS and how future plans aim to broaden the event’s reach and impact. Rachel talks about her kids’ passion for MS Readathon and the involvement of fellow event Ambassador, superstar children’s book author Andy Griffiths.Join us as we spotlight MS Readathon, its history, multi-generational impact on awareness raising and incredible legacy helping those impacted by MS and other neurological conditions.

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!

Reflecting on the recent World Continence Week 2025 which spotlighted bladder, bowel, incontinence, mental health and other issues, MS Australia explores this important subject area which is common for many people including those living with MS.What is incontinence? What are some of the typical bladder and bowel issues people with MS experience? How do MS nurses assist people with continence issues? Where to go to for help? Why can humour alleviate such a serious subject?In this episode, Raw Nerve co-host Dr Julia Morahan, Head of Research at MS Australia speaks with MS nurse K-J Lazarus from Austin Health and Andrew Potter, Lived Experience Partner at MS Australia, about working with patients and living with continence issues, respectively.Specialist MS nurse K-J Lazarus is passionate about continence and Andrew Potter, diagnosed with MS over 25 years ago, has experience with continence issues. Together they discuss the elephant in the room - continence - and its impact, noting there’s help close at hand and why it’s important to speak up. K-J explains continence dysfunction known as incontinence, which for people with MS can manifest as bladder frequency and urgency, bowel constipation or conversely bowel frequency and the importance of tailored management strategies.Our host and guests share many laughs, and Andrew talks about the importance of planning ahead when travelling and visiting new spaces. With continence issues prevalent for many people living with MS, K-J and Andrew discuss options for assistance and handy resources including the MS Australia website, our state and territory MS Member Organisations, the National Public Toilet Map and App, the NDIS (for those eligible) and Continence Health Australia.K-J Lazarus is MS Immunotherapy and Continence Support Nurse at N-CRESS, the Neuro-Immunology Clinical Research, Education and Support Service, at Austin Health, Victoria.Andrew Potter from regional Tasmania, Lived Experience Partner at MS Australia lives with MS and has a long history of advocacy and lobbying and substantial experience in the disability and inspectorial sectors.With the right information, support and resources, continence issues can be managed effectively to maintain a healthy and active lifestyle.

Marking International Men’s Health Week 2025, MS Australia explores the important issue of men’s health - physical, mental, also emotional wellbeing - particularly as it pertains to the male lived experience of MS.How do men experience MS? What is it like living with MS and being male? What is Boccia? What is MS Australia’s Lived Experience Expert Panel? How do lifestyle and support networks play a role in MS management? How can we better support the men in our lives living with MS?In this episode, Raw Nerve co-host Jeremy Henderson, Head of Advocacy at MS Australia speaks with two ordinary Aussie blokes, Chris Brady and Alex McKay about the Paralympic sport of Boccia, MS Australia’s Lived Experience Expert Panel (LEEP) and living with multiple sclerosis. Chris and Alex, diagnosed 30 and four years ago respectively, discuss their passions and very different MS journeys, their symptoms, managing MS and day-to-day lives.Roofing expert Alex works in the hot Queensland sun and Chris from the northern suburbs of Melbourne is hemiplegic, a form of paralysis. Together they talk about the importance of connections, support networks, finding balance, accessible spaces, transport, supports and adjustments, immersion therapy, advocacy, climate and MS and the impact of MS on their sporting endeavours and how staying physically active benefits their MS, health, and wellbeing.With one in four people diagnosed with MS in Australia being men, this is a chance to spotlight the male experience of living with a chronic condition. The guys share many laughs, tell it like it is and provide an honest insight into their lives with MS, the challenges, joys, their personal mantras and advice from what they have learnt.Chris Brady from Victoria is a passionate Boccia player and advocate for physical fitness and was diagnosed with MS in 2005.Alex McKay is a small business owner from the Gold Coast in Queensland, a keen surfer and golfer, and a member of MS Australia's Lived Experience Expert Panel, the LEEP.Hear from two guests in a candid and insightful episode spotlighting men and MS for Men’s Health Week.

In this special World MS Day episode of The Raw Nerve,  MS Australia's Head of Research Dr Julia Morahan, MS Australia research coordinator Dr Jo Gamble, and Lived Experience Expert panel member and artist Deanna Renee join Raw Nerve host Jeremy Henderson to discuss the new MS Australia publication Living well with MS: Your guide to adapting your lifestyle.Together, they explore the importance of evidence-based lifestyle changes, the challenges faced by the MS community in finding credible information, and the empowering impact of MS Australia's latest resource.Deanna shares her personal journey with MS, and how the new resource has helped her “separate the hype from the help”.“Having control over these lifestyle factors is really empowering for me, and I'm sure, for so many of us in the MS community.”Tune in to hear about the collaborative efforts behind the new guide, and actionable advice for those living with MS. Whether you're newly diagnosed or have been living with MS for a number of years, this episode offers valuable insights and support.GuestsDr Julia Morahan, Head of Research at MS AustraliaDr Jo Gamble, Research Coordinator at MS Australia and one of the authors of the new Wellness GuideDeanna Renee, MS Australia LEEP Member, contributor to the new Wellness Guide and artist. Useful links:Living well with MS: Your guide to adapting your lifestyleLiving well with MS website

On International Nurses Day 2025, MS Australia’s focus is the important role of MS nursing as outlined in our new Report: Our Nurses. Our Future. Caring for MS Nurses.What are MS Nurses and MS Nurse Practitioners and how do they work together with neurologists? How can we better support and improve community access to MS Nurses? What are the recent improvements to prescribing for MS Nurse Practitioners?In this episode, Raw Nerve guest host Dr Fiona McKay, Senior Research Coordinator at MS Australia speaks with experts Belinda Bardsley and Tim O’Maley about MS Nurses who provide key support, education, advice, and care for people with MS and their family and carers. Access to MS nurse care brings a range of health benefits and is a highly cost-effective model of care. However, despite this, there is no consistent allocation of MS nurses across Australia including no agreed nurse/patient ratio, challenging employment conditions, no formalised education pathway and a declining number of MS nurses.The panel explore options to reverse this trend and the recent changes made by the Pharmaceutical Benefits Advisory Committee that will allow MS nurse practitioners to prescribe certain MS treatments under the PBS in consultation with a physician. This change is set to dramatically improve access to care for people living with MS, especially in regional and remote areas.Belinda BardsleyMS Nurse, Manager Neuro-Immunology Clinical Research, Education and Support Service (N-CRESS) at Austin Health in Melbourne, Chair of the MS Australia MS Nurses Working Group and co-author of the MS Nurse Care in Australia report.Tim O’MaleyMS Nurse Practitioner, Princess Alexandra Hospital in Brisbane, Queensland Health and member of the MS Australia MS Nurses Working GroupHear from those caring for the MS community in a candid and insightful episode spotlighting MS nursing.Useful links:International Council of Nurses | International Nurses Day 2025 ReportMS Nurses Australasia

In this episode of The Raw Nerve, host Jeremy Henderson sits down with Evie Boven, an Occupational Therapist at Grafton Base Hospital in New South Wales, who was diagnosed with Multiple Sclerosis (MS) in May 2024. Evie shares her compelling journey from experiencing initial symptoms to finally receiving a diagnosis, highlighting the challenges and misdiagnoses she faced along the way.Evie discusses the profound impact her health background had on her ability to advocate for herself, the crucial support she received from her husband, friends, and colleagues, and the daily management of her symptoms. She also reflects on how her diagnosis has deepened her empathy and understanding in her professional role, enhancing her ability to support her patients.Listeners will gain valuable insights into the importance of self-advocacy, the power of a strong support network, and the necessity of living life to the fullest despite a chronic illness. Evie also shares her future plans, including upcoming travel, and offers advice for those newly diagnosed with MS.

Do Australians care enough about healthcare at election time? What are the biggest public health challenges we face? What would it take to put the election spotlight on neurological health? And why is the Australian government continuing to underspend on health and medical research?In this episode of The Raw Nerve, host Jeremy Henderson is joined by Dr Lesley Russell, Terry Slevin, and Rohan Greenland for a candid conversation about the urgent need to prioritise public health and disease prevention in national policy. The panel explores the lack of long-term healthcare commitments from major parties, the chronic underfunding of medical research, and what a minority government could mean for the future of health policy in Australia.Terry SlevinTerry Slevin has been the Chief Executive Officer of the Public Health Association of Australia (PHAA) since May 2018. He is an Adjunct Professor at both the National Drug Research Institute at Curtin University and the College of Health and Medicine at the Australian National University. He is a Fellow of PHAA and was the Association’s first Vice President (Development).Dr Lesley RussellDr Lesley Russell is an Adjunct Associate Professor at the Leeder Centre for Health Policy, Economics and Data at the University of Sydney. She is a contributing editor at Croakey and has written the regular Health Wrap column since early 2018.Rohan GreenlandRohan Greenland is the CEO of MS Australia, Chair of the Neurological Alliance Australia, and an occasional host of The Raw Nerve podcast.Links:Prioritising neurological disease research: do our leaders have the nerve? – Medical Journal Insight+, 3 March 2025MS Australia 2025 Federal Election Statement – 28 March 2025The Medical Research Future Fund: Why is so much of the money unused? – Croakey / The Conversation, 3 April 2025Public Health Association of AustraliaCroakey Health Media

The May 50K is fast approaching, ready to inspire people once again to move with purpose and support MS research.Since launching in 2019, this fun and flexible fitness challenge has raised more than 23.4 million dollars to support world-class research into the prevention, treatment and cure of multiple sclerosis.Each May, thousands of people in Australia and around the world walk, run or roll 50 kilometres, or set their own goal, to help leave MS where it belongs, behind us.In this episode, Raw Nerve host Jeremy Henderson speaks with a passionate group of guests who share their personal connection to the cause, how The May 50K works, and the incredible impact of the funds raised.Sophie and Anne-Maree share their experiences of living with MS and how The May 50K supports their health and wellbeing. The group also explores some of the exciting research projects funded through the challenge, including new grants, the PLATYPUS clinical trial and the EBV in MS platform.Guests:Rohan Greenland, CEO of MS AustraliaDr Tennille Luker, Deputy Head of Research at MS AustraliaSophie Drummond, Campaign Manager for The May 50KAnne-Maree O’Neil, an executive assistant in the transport industry, who lives with MS and was a top fundraiser in 2024Whether 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.

Victorians Cate Green and Clare Reilly both live with MS and are setting out on epic – but very different – journeys on wheels to raise awareness and funds for MS.Cate is preparing to ride 20,000 kilometres around Australia on a traditional road bike, accompanied by her dog Kobe, to shine a spotlight on MS and on business owners with disability. Her journey begins Saturday 5 April 2025. Cate previously featured on the Raw Nerve podcast in September 2023, ahead of her Camino Trail trek in Spain.Meanwhile, Clare is aiming to raise $100,000 for MS research in 2026 by becoming the first person – and wheelchair user – to complete the Munda Biddi Trail, the world’s longest off-road cycling route (1,070 kilometres) in Western Australia. She’ll take on the trail over a month using her off-road, battery-powered adaptive bike known as ‘The Rig’.In this in-depth and moving episode, Cate and Clare discuss their motivations, training, logistics, and the realities of living with and managing MS on the road. They explore the challenges and supports involved – and how they stay focused through it all.Although they didn’t know each other before recording, we were thrilled to learn that Clare is now helping Cate with the admin side of her journey. With both set to ride through WA, we’re excited to release this episode ahead of MSWA’s Ocean Ride in Perth on Sunday 6 April 2025.We’ll be cheering for Cate as she sets off on Saturday 5 April – and for Clare when she tackles the Munda Biddi Trail next year.To follow their journeys on Instagram go to kobecate and help_me_mind_my_own_business_ | Clare.Reilly and wheelchairmeeetswilderness

MS Australia has funded a record number of projects targeting MS research priorities - including causes and prevention, better treatments and cures via repair and regeneration of cells. Join us on the Raw Nerve, on this, our 50th episode, as we delve into four exciting new research projects and talk with the researchers from around the country who are leading this work.Dr Seyhan Yazar from the Garvan Institute of Medical Research & the University of New South Wales is investigating the early symptoms of MS by analysing large datasets and identifying blood biomarkers, with the goal of enabling faster, more accurate diagnosis.Associate Professor Yvonne Learmonth from Murdoch University leads a new Western Australian-based research initiative developing a co-designed toolkit to provide doctors and nurses with practical resources to encourage and support exercise for people with MS.Dr Iain Comerford from the University of Adelaide is exploring how immune cells, such as neutrophils and T cells, drive inflammation in MS. The research aims to understand how these cells interact in order to identify new treatment targets that could protect nerve cells from damage.  Dr Jessica Fletcher from the Menzies Institute for Medical Research at the University of Tasmania leads a research project designed to help the brain repair itself by activating its own healing processes. This pioneering work will examine how to activate the brain’s natural repair system by boosting the activity of myelin-producing cells, called oligodendrocytes, to encourage new myelin growth.  And joining with us to help unpack this work and its impact,  and to discuss the MS Australia research program, is MS Australia’s Head of Research Dr Julia Morahan.Acknowledgements:The March Grant Round was made possible by the brilliance of our researchers, the dedication and support of our Member Organisations – MSWA, MS Plus, MS Queensland and MS SA & NT – and the incredible support from donors, fundraisers and the entire MS community. MS Australia wishes to thank and acknowledge MSWA for its additional support. MS Australia’s largest ever funding round in terms of the number of projects has been made possible thanks to the investment and support of MSWA. In addition to its normal contribution to MS Australia research, MSWA contributed a further $2.4 million dollars into this grant round which allowed for the funding of an additional 10 of the 35 funded projects, guaranteeing important MS research would commence, not just in Western Australia, but throughout the country. Useful links:MS Research Grants AnnouncementMedia Release Research SnapshotResearch Projects

On the latest episode of the Raw Nerve we're joined by Lynda MacCallum, a professional cutting horse trainer, accredited health and wellness, coach wife and mother of two.A former high school teacher. Lynda has a passion for teaching and an interest in nutrition, fitness and health.  Lynda believes that if we focus on our health, our well-being and developing a strong mindset, anything is possible.We'll talk to Lynda about her 2018 MS diagnosis, how she copes with the physical challenges of a big horse cutting event, and about her passion for horses. “Cutting gave me a goal and a purpose, something to focus on every day, even when things got tough.”

In this episode of the Raw Nerve, host Jeremy Henderson sits down with journalist, producer and Mum of two, Brooke Campbell Bayes.Brooke was recently diagnosed with MS. On the podcast Brooke delves into her recent Sydney Morning Herald series that highlights chronic disease and disability, and discusses her insightful interview with legendary Australian comedian Tim Ferguson.Brooke discusses the importance of showcasing the realities of living with chronic illnesses and disabilities, emphasizing the often-invisible struggles faced by individuals. She shares the overwhelmingly positive public reaction to the series and the profound impact it has had on raising awareness and understanding.Throughout the episode, Brooke reflects on the optimism and resilience of the people she interviewed, who find silver linings in their challenging situations. “I’ve just been blown away by the rawness and the honesty of all the beautiful people that I’ve spoken to,” she says. Their stories are both uplifting and inspiring, offering a raw and honest glimpse into their lives.Join us for an enlightening conversation that sheds light on the experiences of those living with chronic illnesses and disabilities, and the power of storytelling in fostering empathy and awareness.Useful links: Fully Sick podcast episode The Sydney Morning Herald: Tahlia had a stroke at age 10. Today, doing her own hair is an accomplishment

In this episode, we chat with Chris Henderson, a former Richmond wheelchair football champion who recently took on the role of Player Coach at Essendon. Chris shares his inspiring MS diagnosis story and of finding renewed purpose through wheelchair football. We delve into the exciting world of this dynamic sport, learning about its unique rules and the incredible athleticism of its players. Chris also discusses his passion for inclusivity and how he's using his platform to educate young people about disability through his work with the Freedom Sports Foundation. This insightful conversation offers a glimpse into the challenges and triumphs of living with MS and the power of sport to connect, inspire, and change lives.

In this episode of The Raw Nerve, we dive into a compelling panel discussion from the Frontiers in MS Research Symposium on how emerging research and clinical trials are transforming the landscape of MS prevention, care and treatment. Our expert panel, featuring researchers, clinicians, and individuals living with MS, addresses key questions shaping the future of MS care. We explore the most promising advancements in early detection and prevention, identify critical gaps in current care that research needs to address, and discuss how to balance immediate quality-of-life improvements with the long-term goal of finding a cure. The conversation also highlights the challenges of translating groundbreaking research into everyday clinical practice and examines how clinical trials influence treatment decisions for those affected by MS. Join us for an engaging exploration of the progress, challenges, and future directions in MS prevention and care.

In this episode of The Raw Nerve, host Jeremy Henderson sits down with Associate Professor Des Graham, the outgoing President of MS Australia. As Des prepares to step down from his role on 28 November 2024,  he reflects on a rich career trajectory that has culminated in over a decade of distinguished leadership of the MS community in Australia. The self-described ‘boy from the bush’ began his working life with a carpentry apprenticeship and has arguably been building something bigger and more valuable ever since. From sheep shearing to nursing; ”a significant shift that lit a fire under me”, to a varied and distinguished career as a senior health bureaucrat, “I was a clinician who understood good governance”, and his latest career leading the MS community post his MS diagnosis, Des has always been driven by a desire to improve the health and welfare outcomes for people in the community. Des discusses the achievements he is most proud of, including the merger of MS Research Australia and MS Australia,  the challenges and opportunities he has encountered while leading MS Australia, and how his lived experience with MS continues to shape his approach. Join us for a heartfelt and insightful conversation with a dedicated advocate for the MS community, as Des shares his hopes for the future of MS research and treatment. Episode Transcript

In this episode of The Raw Nerve, the panel discusses the new Crisis Toolkit to help people living with MS with crisis planning. With summer fast approaching, it’s more important than ever to talk about crisis planning. Whether it’s preparing for heatwaves, bushfires, or any other emergencies, having a plan in place can make all the difference for people living with MS. Dr Tennille Luker dives deep into emergency preparedness for people living with MS. Joining her to discuss crisis planning are Eilish Maguire from Australian Red Cross, Associate Professor Yvonne Learmonth from Murdoch University, Jane Gilliand an MS Nurse from MS Plus and Jenni Vanyai, who lives with MS. The panel discusses the new and updated resources complementing the Australian Red Cross RediPlan, a disaster preparedness guide. Known as the “Crisis Toolkit”, these new and updated resources were developed by Yvonne and a team of researchers in collaboration with Australian Red Cross and MS community stakeholders, to help people living with a disability or a chronic health condition complete their crisis planning. The panel shares their experiences with crisis planning, highlighting the benefits of the Crisis Toolkit, and offering valuable feedback on its impact.

On this episode of The Raw Nerve, host Dr Julia Morahan, Head of Research at MS Australia is joined by retired police officer, Michael Butler who lives with multiple sclerosis (MS), and his neurologist, Dr Jennifer Massey from St Vincent’s Hospital, New South Wales, for an in-depth conversation about Autologous Haematopoietic Stem Cell Transplant (AHSCT) and MS. This episode is for those who want to understand more about AHSCT from an expert and hear from someone who has had the treatment in Australia. Michael Butler has lived with MS for over 20 years and shares his incredible 2002 diagnosis story while a serving officer in the New South Wales police force. He talks through his subsequent MS journey and personal mantra for making the most of what you can rather than can’t do. Michael and his neurologist talk about his referral to Dr Massey’s clinic at St Vincent’s, his early days as a patient, treatment history and AHSCT journey. Host Dr Julia Morahan explains AHSCT and provides insight into MS Australia’s involvement in AHSCT research nationally and internationally and registry of people that have been receiving this treatment in Australia – headquartered at St Vincent’s in Sydney - where MS Australia tracks the outcomes of Australians who have undergone this treatment for MS. Detailing her considerations around presenting AHSCT as a treatment for those eligible while explaining the risks, Dr Massey says, “a big part of this treatment is about identifying people who are most likely to benefit, and that's where accumulating information and these registry studies are going to be most beneficial.” She shares advice for others considering AHSCT, especially the factors to weigh up if they are thinking of making this decision. And given the abundance of media about stem cells across a range of neurological conditions, not just MS, Dr Massey thinks, “having a good understanding of what this treatment is, what it can offer, what it can't offer, and the risks are really the key.” Michael generously talks through and shares for listeners his decision to try the treatment and his preparation, journey, support networks and his life today. Key Topics The lived experience Health management Consultation process Useful Links MS Australia: Autologous Haematopoietic Stem Cell Transplant (AHSCT) Website MS Australia AHSCT Position Statement Episode Transcript Currently AHSCT treatment is provided in Australia at St Vincent’s, Sydney and through two observational clinical trials at Austin Health, Melbourne and The Alfred, Melbourne (visit the MS Australia Clinical Trials Network website for more information) and by a small number of other centres on a case by case basis. These centres have strict eligibility requirements that have been set by the hospital ethics committees and may only apply to limited numbers of patients with MS. It is for this reason patients need to be referred to these centres by a neurologist, who can provide a detailed clinical history and MRI findings. Acronym Glossary MS – multiple sclerosis AHSCT - Autologous Haematopoietic Stem Cell Transplant (sometimes referred to as HSCT) MRI – magnetic resonance imaging PIRA – progression independent of relapse activity

In this episode of The Raw Nerve, we meet James Riley a young father from Ballarat, Victoria who works in the telecommunications industry and like the guest on our previous episode, is a passionate runner. James’s story is a little different, however. His running routine, his marathons and ultra marathons, were halted by an MS diagnosis, and now after over a decade, he has returned to running, albeit carefully and slowly. James recently completed a marathon, his first since his diagnosis and in April 2024 was profiled in his local Ballarat paper, The Courier, and his story has inspired many. Diagnosed with MS in 2015, James shares with our Raw Nerve audience his lived experience of MS and its impact, in a deeply moving discussion with host Jeremy Henderson. Passionate about empowering others with MS, James shares some of the strategies that have worked for him. He talks about living and working with MS, his diagnosis, disclosure, his passion for running, explaining MS to children, managing MS symptoms while training for and competing in a marathon, physical and mental health plus wellbeing, future goals and provides heartfelt advice for people newly diagnosed and starting their MS journeys. Today’s Raw Episode is with someone, an ordinary Australian, living his best life, managing his MS, slowly returning to something he loves and focusing on what he can do rather than what he can't.

Derek Stefureac was diagnosed with MS at age 39 after experiencing a sudden attack of numbness and paralysis. Though initially frightened and uncertain about his future, he became determined to take control of his health embracing positive lifestyle changes; quitting smoking and taking up running. Despite early challenges Derek persisted with his running, completing his first marathon in 2018. Fast forward to 2024, and Derek may be the only person living with multiple sclerosis to have run a marathon on every continent.  “I hope that I can be a good example or motivate or encourage anybody. It's not about running marathons. It's doing a little bit more than you did yesterday. And those days add up;  slowly in the beginning, but over time you look back and you can really see progress. Really, look at me, I had no idea I could run a marathon ever. Especially after I started limping after only one mile. It was very much – just focus on each day, be in the moment, and tackle what's in front of you.” Useful link: ⁠An MS diagnosis 'scared' him to get more active. Now he's done marathons on all 7 continents.

In the latest episode of the Raw Nerve recorded on Friday 13 September, guests Julia Morahan and Heidi Beadnall sit down with the CEO of MS Australia to dive deep into the highlights of the upcoming ECTRIMS 2024 (18-20 September) – the world’s largest MS research congress. The event, attracting over 10,000 delegates from around the globe, serves as a crucial platform for researchers, clinicians, and healthcare professionals to explore and advance the latest in MS research and treatment.  Join the discussion as they explore the revised McDonald Criteria, which bring updated diagnostic guidelines for MS, enhancing early diagnosis and tailoring treatment approaches. The discussion also covers the new Brain Health Report, offering valuable insights into recent findings on brain health and their implications for MS patients. The role of artificial intelligence in MS research is another focal point, with an examination of how AI is revolutionising research and developing new treatment strategies. The potential of Bruton's tyrosine kinase (BTK) inhibitors for treating progressive forms of MS is also highlighted, showcasing promising advancements in medication. Additionally, the episode addresses the impact of Vitamin D on MS, reviewing new research on how Vitamin D levels might affect disease progression and management.  Tune in for an in-depth look at how global experts are working together to shape the future of MS care and research  Host:  Rohan Greenland, CEO, MS Australia    Guests:   Dr Julia Morahan, Head of Research, MS Australia   Dr Heidi Beadnall, is a New South Wales-based neurologist (brain specialist) and researcher with special interests in multiple sclerosis (MS), neuroimmunology and general neurology. At the Brain and Mind Centre, the University of Sydney, Dr Beadnall works as part of the Royal Prince Alfred Multiple Sclerosis Clinic.  Useful links:  ⁠ECTRIMS Conference 2024 | Copenhagen 18-20 September | ECTRIMS⁠  ⁠⁠Dr Heidi Beadnall⁠⁠  ⁠⁠Using automated quantitative brain MRI measures in MS clinical practice⁠⁠  ⁠⁠Multiple Sclerosis clinic, Brain and Mind Centre⁠  ⁠At MS Australia, Brain Health is integrated into everything we do⁠ Video 

In this heartfelt episode of the Raw Nerve, host Julia Morahan delves into the personal and pivotal experiences of living with Neuromyelitis Optica Spectrum Disorder (NMOSD). Joining Julia are Debbie and Alex, two remarkable individuals who share their journeys with NMOSD, shedding light on their daily challenges, and the vital role of timely, effective treatment in their lives.  This episode also features a special guest from the Patient Voice Initiative, who offers insights into the importance of consumer consultation and patient advocacy as we approach a significant decision by the Pharmaceutical Benefits Advisory Committee (PBAC) on a new treatment for NMOSD.  Through personal stories and expert analysis, we explore the profound impact NMOSD has on individuals, the strength required to navigate a diagnosis, and the importance of community and healthcare support. Debbie and Alex’s narratives highlight the realities of those living with NMOSD and underscore the hope that advancements in treatment and advocacy can bring.  Tune in to gain a deeper understanding of NMOSD, the ongoing fight for better treatment options, and the power of collective advocacy in shaping a brighter future for those affected by this challenging condition.  Useful links: New NMOSD medication to be considered at November PBAC meeting MS Australia NMSOD webpage Patient Voice Initiative: Advocating patient participation in Australia  Host: Dr Julia Morahan, Head of Research, MS Australia  Guests:  Alex Raleigh was diagnosed with NMOSD in 2019 while completing her Higher School Certificate (HSC). Despite the significant health challenges that came with her diagnosis, Alex has shown extraordinary resilience and is currently studying medicine.  Deborah Leticq, has been living with NMOSD for many years and has become a well-known figure within the local NMO community.  Ann Single is the CEO of the Patient Voice Initiative, an organisation dedicated to ensuring that the voices of patients are heard in the health technology assessment process.  

In this episode of The Raw Nerve, we mark Women’s Health Week 2024 and explore multiple sclerosis, the lived experience of MS and women’s health. This in-depth, powerful episode is tailor-made for people living with or newly diagnosed with MS, those curious to learn about MS, also MS research. Joining our host, MS Australia Board Director Sharlene Brown, today’s guests include Lilian Law, a young Australian about to commence working in law in New York and Ebony Moffat, Communications Officer for MS Australia. Sharlene, Lily and Ebony live with MS. Our other guest, Dr Julia Morahan, Head of Research, MS Australia, shares fascinating insights into MS research and about some of the clues we have to solve the puzzle of why three out of four people who develop MS are women. With warmth and kindness, Sharlene, Lily and Ebony discuss their lived experience of MS and Dr Morahan talks through MS research in particular pertaining to women. Women’s Health Week 2024 shines a spotlight on some of the biggest issues in women’s health, under the banner of ‘Your voice. Your choice’. Our host and guests explore how some of these issues, including Women’s Health Week’s Tuesday topic ‘Courageous Conversations’, relate to MS and how they are experienced by women living with MS. Passionate about empowering other women with MS, Ebony, Lily and Sharlene generously share some of the strategies that have worked for them. Our guests discuss the importance of early diagnosis, support networks and finding the right healthcare team, namely GPs, neurologists, MS nurses and other important health professionals to help in the treatment and management of MS. Dr Morahan talks about some of the hoped-for new research focus areas to address research gaps for women living with MS, which MS Australia and other MS organisations around the world are trying spotlight. Women with MS are first and foremost women, and today’s Raw Nerve episode provides some vital health messages, for example when you’re living with MS, conditions other than MS can affect your MS. Our guests also share tips to help manage the impact of MS on one’s daily life. Key links:  Women’s Health Week 2024 MS Australia support and services webpage Why are three out of four people who develop MS women? By Dr Julia Morahan

The Paris Paralympic Games from 28 August to 8 September will feature more than 4,000 athletes from around the world, including 160 Australian athletes competing in 17 sports.  In this special two-part episode of The Raw Nerve, host Jeremy Henderson chats with two-time Paralympian Emily Petricola OAM PLY (cycling) and first-time Paralympian Ameera Lee (archery) to explore what it means to wear Green and Gold in the Paris Paralympic Games, while living with multiple sclerosis (MS). This episode features Ameera Lee, an Administration Secretary with NSW Health and single parent, on the cusp of achieving a lifelong dream. Diagnosed with MS in 2012, Ameera took up para-archery in 2016 at the age of 40, and by 2023, her performance at the 2023 Para-archery World Championship in the Czech Republic, earned her a Paralympics quota spot for Paris 2024, in her classification. Our Paralympians share their team selection and MS stories, diagnosis journeys, how MS impacts their daily and athletic lives and discuss their love for their individual sports. Emily and Ameera also tell us about symptom management, managing fatigue and heat while training and competing, and about the joy of representing Australia in Paris. Tune in to all the action from the Paris Paralympic Games on Nine Network and Stan from 28 August. Useful links: ⁠Paralympics Australia: Ameera Lee

The Paris Paralympic Games from 28 August to 8 September will feature more than 4,000 athletes from around the world, including 160 Australian athletes competing in 17 sports.  In this special two-part episode of The Raw Nerve, host Jeremy Henderson chats with two-time Paralympian Emily Petricola OAM PLY (cycling) and first-time Paralympian Ameera Lee (archery) to explore what it means to wear Green and Gold in the Paris Paralympic Games, while living with multiple sclerosis (MS). This episode features Emily Petricola who was diagnosed with MS at the age of 27 in 2007 and who shares how competing at the Paralympics as an elite para-cyclist for the Australian Cycling Team is more than an athletic pursuit, it is a profound personal victory. Our Paralympians share their team selection and MS stories, diagnosis journeys, how MS impacts their daily and athletic lives and discuss their love for their individual sports. Emily and Ameera also tell us about symptom management, managing fatigue and heat while training and competing, and about the joy of representing Australia in Paris. Tune in to all the action from the Paris Paralympic Games on Nine Network and Stan from 28 August. Useful links: Paralympics Australia: Emily Petricola

The MS community is brimming with extraordinary people whose remarkable contributions inspire us all. To celebrate and recognise more of these outstanding individuals, MS Australia has renewed its annual award program in 2024. Today we talk about the important change to the MS Australia Awards including two new awards open to public nomination, the remarkable legacy of the late John Studdy and why his namesake award remains our centrepiece, the reason for the expansion of the Awards and about the ‘quiet achievers’ – including many living with MS and doing remarkable work every day in MS research, MS advocacy; as volunteers and carers. And we talk about how you can get involved and nominate these individuals for an MS Australia award. Our three guests today are: Rachel Kerr, 2023 John Studdy Award Winner and MS Queensland Ambassador Sharlene Brown, MS Australia Board Director and Chair of both the John Studdy Selection Panel and Advocacy Committee and George Pampacos, MS Australia Deputy Chair, Chair-elect and 2021 John Studdy Award co-recipient.  All three have extensive and deep connections to MS and the MS community. Useful links: MS Australia Awards Honouring a passionate MS advocate: John Studdy Media Release: Award for providing a voice to people living with MS in the Queensland community

In this episode of The Raw Nerve, we mark National Pain Week 2024 and explore an important subject area – chronic pain and MS. Our introductory guest, Nicolette Ellis, Chair of Chronic Pain Australia explains to podcast host, Dr Julia Morahan, the focus of this year’s National Pain Week and the ‘painchanger’ theme which is focussed on the lived experience of chronic pain.   For many people living with MS, pain is a constant. Pain covers a wide range of unpleasant physical sensations, but everyone – people living with or without multiple sclerosis – experiences it differently. Pain is one of the less recognised common symptoms of MS, with an estimated two-thirds of people living with MS experiencing pain. Deanna Renee, who has lived with MS for 18 years, shares her personal experience of chronic pain and the various strategies she uses to manage it. Dr. Alice Saul discusses the scientific aspects of pain in MS and the importance of research in improving quality of life for those living with MS. The episode concludes with a discussion on the social and emotional impact of chronic pain and the importance of community support. Host Dr Julia Morahan, Head of Research, MS Australia Panellists Nicolette Ellis Chronic Pain Australia Chair Deanna Renee has lived with MS for 18 years. She is a mental health clinician and advocate. An MS Australia National Advocate, LEEP (Lived Experience Expert Panel) member and advocate for our Member Organisation, MS Plus Dr Alice Saul is Postdoctoral Research Fellow in Multiple Sclerosis Research at the Menzies Institute for Medical Research, University of Tasmania Key links:  National Pain Week 2024 About Dr Alice Saul MS Australia pain webpage Deanna’s Instagram

On this special episode of The Raw Nerve we mark World Brain Day, an annual event observed on July 22, aimed at promoting awareness and education for neurological disorders that affect individuals worldwide.  Host Dr Julia Morahan reminds us that our brains are by far the most complex organs 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. A multitude of factors can affect our brain health even before we were conceived! CEO of MS Australia and Chair of the Neurological Alliance Australia, Rohan Greenland explains the measures he is advocating for that will help progress research, support and services for millions of Australians living with a neurological condition and in turn, support their brain health. Georgina Carr, Chief Executive, The Neurological Alliance England reveals her own success and challenges convincing decision makers about the importance of optimising brain health in the neurological community. The episode concludes with Neurologist, Professor Tomas Kalincik, speaking optimistically and enthusiastically about the advancements and opportunities in brain health research. Host Dr Julia Morahan, Head of Research, MS Australia Panellists Rohan Greenland, CEO, MS Australia and Chair of the Neurological Alliance Australia Georgina Carr, Chief Executive, The Neurological Alliance England Professor Tomas Kalincik, Dame Kate Campbell Professorial Fellow, Director | Neuroimmunology Centre | Department of Neurology | Royal Melbourne Hospital and Head | Clinical Outcomes Research Unit | Department of Medicine | University of Melbourne Useful links: Brain health report Why is brain health important in MS? Optimizing brain health across the life course: WHO position paper

Content warning: The following video contains discussion of mental health issues and suicide.  If you or someone you know is in need of support, contact Lifeline at 13 11 14 or visit ⁠www.lifeline.org.au⁠. In cinemas on 22 August, Take My Hand is a powerful Australian feature film with multiple sclerosis as a central part of the storyline. On a special episode of The Raw Nerve we talk to the creators, real-life partners and inspiration for the film. Take My Hand Executive Producer Claire Jensz and her husband Writer and Director John Raftopoulos discuss the challenges of making the film and the very personal nature of sharing their real-life love story with the world. Claire and John reflect on their own journey, Claire living with MS, and John in his role as a carer, and the impact it has had on their lives. They also discuss the importance of raising awareness about MS and the insights they hope audiences will take away from the film; messages of hope and resilience as well as a better understanding of multiple sclerosis. www.takemyhandthemovie.com

Jen Willis has fulfilled her childhood dream of learning to mountaineer. We first met Jen in January 2023 and on this latest episode of The Raw Nerve, she shares her journey, passion for mountains and climbing mountains, life with multiple sclerosis (MS) and her recent trek to Everest Base Camp with a group of others with MS from Australia, the UK and the USA, guides, and a cinematographer. The acclimatisation needed to get to nearly 5,400 metres when you live with MS and come from sea level is astonishing. The trek up to Everest Base Camp and back is around 130-kilometre with steep hills, uneven ground and a constant increase in altitude. Jen and her co-trekkers carefully pushed through the everyday challenges of MS toward their dream of trekking and travelling in Nepal. Passionate about helping others achieve their dreams, Jen talks about the power of shared experience and sharing the magic of mountaineering with others. Her many learnings along the way include leadership, guidance, living in the moment and how little steps can grow confidence and help to navigate life’s challenges. The trek ignited a sense of adventure in the group and being together in Nepal on World MS Day was extra special. Jen talks through her mountaineering and other future plans, passion for awareness and fundraising for MS and MS research, the importance of taking seriously any early signs and symptoms and the self-drive that many feel as a result of living with a chronic, often invisible condition like MS. Useful Links: MS Adventure MS Adventure Facebook

Count Us In: Neurological Alliance Australia Summit, Parliament House, Canberra – Tuesday 25 June 2024 At a landmark summit in Canberra, Neurological Alliance Australia hosted a panel of people with lived and carer experience, to call attention to the needs of millions of Australians living with neurological conditions, at the launch of the Count Us In campaign. Neurological conditions are on the rise in Australia and globally, and yet, despite being recognised as one of this country's top disease burdens, neurological conditions remain under-recognised and underfunded. On the Raw Nerve this week, summit facilitator Virginia Haussegger and guests hear powerful stories about multiple sclerosis, Parkinson’s disease, childhood dementia and motor neurone disease, some of the many hundreds of neurological conditions which as a collective, require urgent recognition and attention. Among many touchpoints, you will hear panellists discuss the impact of neurological conditions on self and families, diagnosis, caring for family members with lived experience, the NDIS and the critical importance of research and funding for research. Acronym glossary: NDIS = National Disability Insurance Scheme NDIA = National Disability Insurance Agency EB = Epstein-Barr (virus) Useful links: Count Us In Campaign page