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