The Raw Nerve

Two LEEP members share practical, lived-experience tips on preparing to travel with MS, from booking to boarding.

In this first episode of a two-part series on travel and MS, host Jeremy Henderson is joined by MS Australia Lived Experience Expert Panel (LEEP) members Rachel Fallis and Deanna Renee. Rachel, a former NSW Police detective sergeant, and Deanna, an artist diagnosed with MS at 17, share their MS journeys and what travel means to them: freedom, adventure, connection and memories that aren't centred on medical appointments.

Topics covered:

• Preparing before you book and before you go – Rachel explains how she shapes trips around her energy, with one priority activity a day, rest days, longer stays and accommodation close to transport and restaurants. Deanna discusses heat sensitivity, airport assistance and learning that resting is not a failure.
• Advocacy and policy: making the whole journey accessible – From a coin-operated station toilet in Italy to long walks between airport gates, the guests share what can go wrong and what travel and transport systems need to do better, including dedicated disability contacts and the Hidden Disabilities Sunflower. Jeremy also outlines MS Australia's advocacy on the Whole Journey Guide and Aviation Disability Standards.
• Preparing for the realities of travel – Practical tips for the lead-up to departure: travelling with medications and doctors' letters, checking destination rules and travel insurance, timing trips around treatment, packing light, and building in recovery time after long flights. Plus, how to prepare mentally for the unexpected, because, as Deanna says, 'waves are meant for surfing'.
• The last word – Advice for anyone with MS who wants to travel but doesn't know where to start: start small, ask questions, speak with your healthcare team, and give yourself permission to rest and travel your own way.

Part two, MS on the Road, will be published in 2027. This conversation is general in nature and should not replace individual medical, legal or travel advice.

Being counted is only the beginning. What will it take to turn stronger evidence into better care for Australians living with neurological conditions?

In this episode of The Raw Nerve, Host Jeremy Henderson explores revised Australian Institute of Health and Welfare (AIHW) data incorporating new evidence on migraine and multiple sclerosis (MS), including MS prevalence research commissioned by MS Australia and undertaken by the Menzies Institute for Medical Research.

The updated reporting estimates that about 4.5 million Australians were living with at least one neurological condition in 2025, while almost 37,800 Australians were living with MS in 2024.

Jeremy is joined by Rohan Greenland, Chair of Neurological Alliance Australia and CEO of MS Australia; Dr Tennille Luker, Head of Research at MS Australia; and Chloe Cifelli, Chair of Migraine Australia. Together, they unpack what the figures reveal—and why recognition must lead to action.

From delayed diagnosis and migraine stigma to specialist shortages, high out-of-pocket costs and fragmented care, the discussion connects national data with everyday experiences. Chloe shares the practical and financial challenges of accessing migraine treatment, including her own powerful lived experience story, while Tennille explains the growing impact of MS and the importance of better-connected data, early intervention and research. Tennille reveals the almost 37,800 Australians with MS figure has increased from 13% in 2021 and by 77% since 2010. She says that MS prevalence is increasing at an accelerated rate which isn’t just population growth: the actual MS prevalence per 100,000 Australians has gone up from 96 to 139.

At the heart of the conversation is Neurological Alliance Australia’s Fair Go for Neuro campaign and its call for a government funded and implemented National Action Plan for Neuro. As Rohan says, “The numbers now justify action, urgent action.” The guests explain why a national response must connect health, disability, aged care, workforce planning and research, with lived experience shaping priorities.

Hear why a united neurological voice matters, what meaningful progress could look like, and how supporting the campaign’s open letter can help build momentum for change.

MS Australia’s Member Organisations provide frontline support for people living with MS and a range of other neurological conditions. For migraine support, visit the Migraine Australia website.

Today we're focusing on movement, function and independence, and the specialist physiotherapy support that can help people living with multiple sclerosis continue doing what matters to them.

Host Jeremy Henderson and Associate Professor James McLoughlin trace James' path into MS care, explain what neurological physiotherapy can offer throughout the MS journey, and share practical guidance on finding support. When should physiotherapy enter the care pathway after diagnosis, and why can early assessment help before significant mobility problems appear?

James explains how exercise shifted from being discouraged to recognised as beneficial, distinguishes physiotherapy—including neurological physiotherapy—from exercise physiology and occupational therapy, and shows where they intersect. He also discusses MS nurses, continuity of care, ageing with MS, long-term brain health, MS services, the NDIS, disease-modifying therapies (DMTs) since the mid-1990s, and future technologies including robotics.

MS symptoms mentioned which may benefit from physiotherapy, including neurological physiotherapy, include gait, walking and mobility changes, balance problems, reduced strength, coordination, cognitive changes, fatigue, motor and cognitive fatigue, pain, spasticity, ataxia and bladder problems.

Our Member Organisations provide practical physiotherapy support around Australia:

• MS Plus offers specialised physiotherapy in Victoria and New South Wales as well as via telehealth in Tasmania and the ACT. Its physiotherapists support symptom management, mobility, strength, balance and independence, and work collaboratively with exercise physiologists.
• MSWA provides neurological, respiratory and continence physiotherapy across Western Australia through service centres, home visits, community settings and telehealth. Support can include individual programs, gait rehabilitation, hydrotherapy, falls prevention, fatigue management and assistive technology.
• Led by MSWA, MS Society SA & NT physiotherapists work with people living with MS to improve physical function, mobility and quality of life. Services are available at the Kilkenny Services Centre and via telehealth in South Australia and the Northern Territory.
• MSWA also offers vestibular and lymphoedema physiotherapy across both Western and South Australia.
• MS Queensland provides neurological physiotherapy through Neuro Wellness Hubs, home visits and telehealth, including early intervention, symptom management, personalised exercise programs and NDIS access reports.

Also check out MS Australia's Living Well with MS guide, informed by the latest research and real-life experience.

Cassidy Krygger is a film historian, cultural commentator, filmmaker and founder of Hollywoodland Photos, who first featured on The Raw Nerve Podcast in 2024. Living with multiple sclerosis (MS) since 2018, she draws on classic cinema and lived experience to explore identity, resilience and invisible illness through her films ‘Daisy’, ‘Love in the Moonlight’ and ‘The Last Spotlight’.

Cassidy returns to the podcast to discuss creativity, storytelling, cinema and life with MS with host Jeremy Henderson.

Since her previous appearance, ‘Daisy’ has screened at more than 30 international film festivals, won 17 awards and earned a Best Short Film nomination at the 2025 AACTA Awards—building Cassidy’s confidence and opening doors.

Cassidy reflects on Hollywoodland Photos, the classic-cinema platform she founded at 18. Now attracting more than 20 million monthly views, it combines her fascination with old Hollywood’s beauty, escapism and history with well-researched, respectful content.

Her deeply personal short film in development, ‘The Last Spotlight’, is set in 1950s Melbourne, Australia and follows Norma, a glamorous showgirl diagnosed with MS at her career’s height. Cassidy hopes to make invisible symptoms visible and examine the pressure to conceal illness while performing.

She explains how her diagnosis and considering those who lived with MS when information, support and treatment were scarce shaped the concept. Her research included a conversation with eminent neurologist and MS researcher Professor Bruce Taylor of the Menzies Institute for Medical Research, University of Tasmania, co-recipient of MS Australia’s 2025 MS Research Award.

Today’s conversation explores fatigue, brain fog and fluctuating health alongside demanding creative work. Cassidy emphasises supportive healthcare and filmmaking teams, help from her mother and friends, realistic scheduling, recovery time, openness, and self-advocacy.

For Cassidy, rest is as important to success as action.

She previews ‘Love in the Moonlight’, a classic-film-inspired romantic supernatural feature moving into production and plans a glamorous World MS Day 2028 premiere of ‘The Last Spotlight’ to raise MS awareness and funds in support of MS Australia.

Ultimately, Cassidy wants her films to offer escape, joy and understanding. Her work reminds us that even when life changes unexpectedly, the story is still being written.

Women are around three times more likely than men to develop multiple sclerosis (MS), but why remains an enduring question in MS research.

In this episode of The Raw Nerve, Head of Research Dr Tennille Luker marks Women’s Health Week 2026 with Deborah Cuddihy and Teisha Rose, whose different lives are connected by MS.

Inspired by this year’s theme, Do It Anyway, the conversation explores five topics: To Fuel, To Move, To Rest, To Breathe and To Connect, through MS.

Deborah and Teisha share how they listen to their bodies and adapt their approach to food, exercise, MS fatigue, rest and sleep, and mental wellbeing, including finding workable movement, managing heat sensitivity, slowing down and releasing guilt when plans change.

Teisha reflects on how a tailored mobility aid helped her become more active and explore her 100-acre property in central Victoria, while Dubai-based Deborah discusses exercising with her four beloved dogs (“pups”) and balancing challenge with rest.

They also explore MS-related uncertainty and mental wellbeing, discussing strategies, relationships, and support networks that help them manage their days and stay connected.

Dr Luker examines why MS is much more common in women, outlining clues researchers are investigating, including genetic and environmental factors and the potential role of sex hormones.

Ultimately, Deborah and Teisha’s experiences show that looking after your health with MS does not mean doing everything perfectly. It can mean adapting, listening to your body and taking small, meaningful steps toward your wellbeing with guidance from your healthcare team and support networks.

Deborah Cuddihy
An Irish primary school teacher living in Dubai, Deborah was diagnosed with MS in 2011. She is an ambassador for the National MS Society UAE and author of Willow’s Mum Has MS, helping children understand MS.

Teisha Rose
Diagnosed with MS in 1997 at 22, Teisha has lived with MS for more than half her life. That experience shaped how she navigated major health challenges, including breast cancer, severe colitis, septic shock and ICU admission. MS taught Teisha that, even when life changes unexpectedly, hope and response still matter, a message she shares as a public speaker.

Australia’s first national survey of people affected by neurological conditions has revealed a clear and urgent message: too many Australians are navigating complex, fragmented systems without the timely, coordinated and affordable care they need.

In this episode of The Raw Nerve, we explore findings from the inaugural Neurological Alliance Australia Neuro Survey, which gathered experiences from 3,805 Australians affected by neurological conditions. The results paint a stark picture: fewer than four in ten respondents described their care as coordinated, more than half had difficulty accessing neurological care, one in three waited more than four years for a diagnosis, almost half delayed or skipped healthcare because of cost, and just one in ten felt fully supported by their healthcare team.

Recorded at the NAA Neuro Summit at Parliament House in Canberra, this conversation brings together survey evidence, lived experience, clinical insight, research, workforce priorities and policy discussion shaping the case for change. Summit themes include earlier diagnosis and specialist care, coordinated models across health, disability and aged care, investment in neurological research, a stronger neurological workforce, better national data, and equitable access to care regardless of where someone lives.

We hear why these gaps matter for people living with progressive, fluctuating and complex neurological conditions, and why delays in diagnosis, specialist access, treatment and support can affect health, independence, employment, family life and future care needs. The episode reflects lived experience, including the challenge of managing appointments, specialists, tests, treatments and out-of-pocket costs while often being left to coordinate care alone.

At its heart, the episode asks what needs to happen next — and how governments, clinicians, researchers, advocates and people with lived experience can work together on a coordinated national response. NAA is calling for a National Action Plan for Neurological Conditions, supported by state and territory plans, to give Australians affected by neurological conditions a fairer opportunity to receive timely, coordinated and affordable care.

The Summit, held on Thursday 13 August 2026 and helmed by MC Tracey Spicer AM, brought together a range of speakers including parliamentarians, people with lived experience, carers, clinicians, researchers, policymakers, sector leaders and advocates.

Announced on 29 July, MS Australia's 2026 Mid-Year Research Grants support bold new ideas with the potential to transform the future of multiple sclerosis (MS) research and treatment. Every breakthrough in MS research begins with researchers asking questions yet to be answered. MS Australia is committed to supporting Australia’s leading researchers as they tackle some of the biggest unanswered questions in MS.

In today’s episode, MS Australia’s Deputy Head of Research, Dr Fiona McKay, speaks with two of this year’s grant recipients: Dr Tal Koren from the Brain and Mind Centre at The University of Sydney and Dr Samantha Barton from The Florey Institute of Neuroscience and Mental Health in Melbourne.

Dr Koren discusses his work using advanced MRI techniques and artificial intelligence to better detect and monitor spinal cord damage in people living with MS.

Dr Barton explains how human stem cell-derived ‘mini brains’ are helping her team study myelin formation and identify future opportunities to repair damaged myelin.

You’ll also hear about our third grant recipient, Dr Carla Proietti, whose research at The University of Queensland’s Institute for Molecular Bioscience investigates how Epstein-Barr virus (EBV) and genetics interact in MS, as well as details of MS Australia's National Symposium on MS Medications taking place later this year.

The three innovative projects funded through MS Australia's 2026 Mid-Year Grant Round address our community’s top priorities for MS research, including causes and prevention, better treatments, and cures through cell repair and regeneration. Together, these projects explore the role of EBV and genes in MS, myelin in ‘mini brains’, and the use of AI for more sensitive MS monitoring.

Join us to hear what these projects could mean for the future and what inspires and motivates this next generation of MS researchers.

In this episode of The Raw Nerve, Host Jeremy Henderson, Head of Advocacy for MS Australia, and Co-Host Sharlene Brown, Chair of the MS Australia Awards Committee, spotlight the 2026 MS Australia Awards and remarkable people driving change, compassion and progress across the Australian multiple sclerosis (MS) community.

As nominations open for the 2026 MS Research Award and MS Advocacy Award, Jeremy and Sharlene, who has lived with MS for 24 years, speak with 2025 MS Australia Awards recipients about recognition, why nominations matter, and how the awards highlight quiet achievers whose work uplifts, empowers and inspires people affected by MS.

Guests include Belinda Bardsley from Austin Health, 2025 MS Advocacy Award recipient, who reflects on her passion for MS nursing, early education and support after diagnosis, the Back on Track resource, Foundations of MS Nursing Course and equitable access to MS nurses. Professor Bruce Taylor, 2025 MS Research Award co-recipient, discusses decades of research into MS, consumers’ growing role in research and the possibility of making MS preventable. Professor Helmut Butzkueven, also a 2025 MS Research Award co-recipient, shares how data, clinical care and the MSBase Registry are improving treatment decisions and outcomes for people with MS. Jan Miles, representing the Miles family and Team Walk for Jess, reflects on receiving the 2025 John Studdy Award and the family’s grassroots fundraising and awareness in Queensland.

Together, the conversation highlights the power of recognition, the strength of the MS community, and the many ways people contribute through research, advocacy, nursing, fundraising, volunteering and lived experience.

Our guests talk about giving back, the significance of their awards, and how you can nominate, recognise and applaud someone you know for their contributions.

The MS Australia Awards spotlight people driving change, compassion and progress across the MS community. From researchers, advocates, volunteers and carers to longtime champions whose impact spans a decade or more, the awards recognise individuals, many living with MS, whose efforts uplift, empower and inspire. To nominate someone making a meaningful difference for the 2026 MS Australia Awards, complete the online form on our website by Sunday 6 September 2026.

In this extended episode of The Raw Nerve, Host Jeremy Henderson is joined by guest Co-Host Lisa Montague, Raw Nerve Producer and Public Relations Manager for MS Australia, for a warm and wide-ranging conversation with acclaimed Sydney author Elizabeth Lancaster.

Elizabeth’s new memoir, 'Bounty: A Memoir of Friendship, MS and the Dog That Changed Everything', follows her award-winning debut 'Marzipan and Magnolias', which explored her relationship with her mother and the onset of her multiple sclerosis (MS). In 'Bounty', in which she is known as Libby, Elizabeth takes her story in a new and uplifting direction, reflecting on how a spirited rescue dog helped draw her back into the world.

No two people experience MS in the same way, and so too everyone finds strength in their own way, as Elizabeth’s new book attests. Through Bounty the dog, we learn about MS and conversely, how dogs sometimes need to learn to be patient and considerate of their human companions.

Told with candour, humour and tenderness, 'Bounty' explores friendship, illness, disclosure, identity, care, community and the restorative power of connection. In this episode, Elizabeth talks about writing through and about chronic illness, the emotional realities of MS, and the ways human and animal companionship can offer support, patience and unexpected joy.

The conversation also touches on MS experiences and themes including symptoms, relapsing remitting MS, relapses, progressive MS, lifestyle changes, travel, accessibility, family, friends and carers, as well as the joys and challenges of dog ownership and the community found in local dog parks.

Whether you are living with MS, supporting someone who is, or simply interested in a moving story about resilience, friendship and the bond between people and dogs, this episode offers insight, warmth and plenty to reflect on.

For helpful MS contacts in your local area, visit our Support and Services page and explore MS Australia’s Lifestyle Guide for people living with MS.

In this special episode of The Raw Nerve marking International Men’s Health Week 2026 (known in Australia as Men’s Health Week), host Jeremy Henderson speaks with Bruce Frost and Andrew Holt from Narooma and Pambula respectively, on the stunning far south coast of New South Wales, about friendship, community, the great outdoors and living with MS.

Diagnosed on the same day in 2001, Bruce and Andrew reflect on how mateship, active living and staying connected to their local communities helped shape their journeys with multiple sclerosis. From surf lifesaving and the George Bass Surfboat Marathon to mental health, resilience, bee keeping, the building industry, helping others and adapting to change, they share an honest and uplifting conversation about finding purpose, positivity and support through life’s challenges.

Together, they discuss the importance of openness, staying active, their beautiful coastal surroundings, supporting and leaning into one another and maintaining strong social and community connections, particularly for men navigating health challenges. Our guests also talk about MS symptoms; accessible dwellings, fixtures and fittings, the MS Readathon and provide helpful advice for others diagnosed with MS.

Running from Monday 15 to Sunday 21 June, visit this additional Men’s Health Week Australia site for further details. For those living with MS, please reach out to your neurologist, MS nurse, or GP for advice and support. Visit MS Australia’s Support and Services page for helpful MS contacts in your local area, including MS Plus in New South Wales and explore our new Lifestyle Guide.

Join us for a special episode of the Raw Nerve Podcast as we celebrate the launch of an innovative MS Nurse-led resource designed to support Australians living with multiple sclerosis (MS) amid MS specialist nurse care shortages.

MS Specialist Nurses or MS Nurses are an integral part of the multidisciplinary team of specialist healthcare professionals providing support, education, advice, and care for people with MS and their family and carers.

Developed by MS Australia and MS Nurses Australasia, ’Back on Track’ was likewise developed by expert MS Nurses, drawing on their combined 140 years of experience working in MS, together with lived experience contributions from the MS community.

Today we take you to the MS Plus Wellbeing Centre in Lidcombe, New South Wales, for the 29 May 2026 launch of ‘Back on Track’: a series based on the PhD research of Dr Therese Burke AM.

In a panel session chaired by Katie Snell, MS Australia Policy Manager, you’ll hear from ‘Back on Track’ presenter and project lead, Registered Nurse, MS Specialist Dr Therese Burke AM and her fellow resource presenters, Registered Nurse, MS Specialist Belinda Bardsley and MS Nurse Practitioner, Tim O’Maley. Rounding out the panel is MS Australia Lived Experience Expert Panel (LEEP) member Rachel Fallis.

The launch of ‘Back on Track’ marks World MS Day 2026, with this year’s global campaign once again focused on the theme ‘My MS Diagnosis: Navigating MS together’.

The World MS Day ‘Diagnosis’ theme highlights the importance of timely, supported diagnosis and navigating the critical early stages of life with MS.

With one in three Australians living with MS lacking access to specialist MS Nurse care, this innovative new MS Nurse-led video and audio resource is designed to empower and guide people through their unique MS journey.

Other speakers:

• Rob McClay, Executive Manager, Strategy and Client Impact, MS Plus
• George Pampacos, Chair, MS Australia
• Meaghan Osborne, President, MS Nurses Australasia
• Rohan Greenland, CEO, MS Australia

Useful links:

• Back on Track
• MS Australia’s Living Well with MS Lifestyle Guide
• Local MS Contacts/Support and Services

In this special episode of The Raw Nerve, we speak with Jen Willis after her historic Mount Everest summit. As the first Australian living with MS to reach the top of the world, Jen speaks candidly about the mental and physical demands of the climb, the support network that helped make it possible, and how living with MS shaped the resilience and perspective she brought to the mountain.

Useful links:

• Jen’s summit day

• Everest 2026: The Climb Beyond the Summit

MS Australia Deputy CEO Dr Julia Morahan speaks with leading clinician researchers and MS experts Professor Helmut Butzkueven and Associate Professor Anneke van der Walt about the updated 2025 McDonald Diagnostic Criteria for multiple sclerosis (MS).

The revised guidelines aim to diagnose MS earlier and more accurately, helping people access treatment sooner and improve long-term outcomes. The update represents a major step forward in care and quality of life. The panel explores why “time is brain” in MS care, how new MRI and eye imaging technologies are changing diagnosis, and what the updates mean for clinicians and the MS community.

The discussion also highlights the global collaboration behind the criteria update, including the role of people living with MS in shaping the recommendations, and how research from the MSBase Foundation continues to influence MS care worldwide.

This episode provides practical insight into one of the most significant advances in MS diagnosis and care in recent years and explores:

• Why the 2025 McDonald Diagnostic Criteria matter
• How the new guidelines may reduce delays in diagnosis
• Why earlier MS diagnosis can improve long-term outcomes

For many people, receiving a diagnosis brings clarity and relief. As echoed by members of MS Australia’s Lived Experience Expert Panel (LEEP), alongside clinical accuracy these updates help people move forward with confidence, access treatment earlier, and feel supported in their MS journey.

Explore MS Australia's new Lifestyle Guide and for helpful, local contacts visit our Support and Services page. The revised McDonald Criteria will feature in the 2026 World MS Day campaign.

Guests

Professor Helmut Butzkueven is Van Cleef Roet Professor of Neuroscience at Monash University, Director of Neurology, Alfred Care Group at Bayside Health, Head of the Department of Neuroscience, School of Translational Medicine (Alfred Campus), Monash University, and Managing Director of the MSBase Foundation. He is co-recipient of the 2025 MS Australia MS Research Award.

Associate Professor Anneke van der Walt is Director, MS and Neuroimmunology and Neuro-ophthalmology at Alfred Health; Head of the MS and Neuro-ophthalmology Group, Department of Neuroscience, School of Translational Medicine at Monash University; and Chief Operating Officer of the MSBase Foundation.

The episode transcript is unavailable at this time.

Today’s episode spotlights the essential topic of continence, examining its effect on quality of life, including for people living with multiple sclerosis (MS).

We feature an engaging conversation with Continence Health Australia and a powerful personal account from a Lived Experience Expert Panel (LEEP) member and share practical tips and resources.

With World Continence Week 2026 (June 15–21) on the horizon, our episode highlights this important yet often overlooked issue. Many Australians—those with MS included—face bowel or bladder challenges during their lives. Continence means managing bladder or bowel function; incontinence is losing this control. While this is a common symptom for people with MS, the right resources and support can make a healthy, active life possible.

Guest host Dr Tennille Luker, MS Australia’s Head of Research, outlines typical bladder and bowel problems for people living with MS, the underlying causes, and steps to take when these concerns appear. Jim Cooper, CEO of Continence Health Australia, offers ways to improve life for those managing continence issues and details the popular National Public Toilet Map. Anne Cooper, a LEEP member from Western Australia, shares her personal journey with continence, her connection to our Member Organisation MSWA, management strategies including catheters, and how humour has played a vital role.

Our panel discusses the high prevalence of incontinence in Australia (over seven million people affected), living with MS and continence concerns, the importance of plentiful, accessible public toilets, how continence can impact sleep, common misconceptions and stigma, community and family support, innovative campaigns like the Great Dunny Hunt, and why early recognition and a multidisciplinary approach matter.

For those living with MS with new or ongoing bladder or bowel symptoms, please reach out to your neurologist, MS nurse, or GP for advice and support. Visit MS Australia's Support and Services page for helpful MS contacts in your local area and explore our new Lifestyle Guide.

The Continence Health Australia helpline is free and confidential, their 2026 National Conference includes a Community Event in Melbourne on 16 May, and the National Public Toilet Map is a fantastic resource for accessible facilities across the country.

The May 50K is fast approaching and today we explore its impact on MS (multiple sclerosis) research, and how participants support important research advancements.

Since launching in 2019, this fun and flexible fitness challenge for individuals and workplace teams has raised more than $25.5 million to support world-class research into the prevention, treatment and cure of MS.

Each May, thousands of people in Australia and around the world walk, run, roll, swim 50 kilometres, or set their own goal or activity, to help leave MS where it belongs, behind us.

In this episode, Raw Nerve host Jeremy Henderson speaks with three passionate May 50K champions and participants about the importance of community, exercise, and fundraising in the fight against MS.

Today’s guests are Dr Fiona McKay, Deputy Head of Research at MS Australia, Sophie Drummond from our Member Organisation MS Plus and Campaign Manager for The May 50K, also Dr Amanda Kennedy, a member of MS Australia’s Lived Experience Expert Panel (the LEEP) and Lecturer in Marketing at The University of Sydney. Sophie and Amanda also live with MS.

Key topics include:

• The significance of The May 50K event in MS research funding
• How exercise benefits people living with MS and the community
• The role of community and teamwork in fundraising success
• Research priorities and breakthroughs in MS, including EBV (Epstein-Barr virus) and progressive MS trials
• Personal stories of MS diagnosis, advocacy, and participation in the May 50K and strategies for fundraising
• New innovations and incentives for May 50K participants
• MS Australia’s Lived Experience Expert Panel

You will hear how to register for The May 50K 2026 and clock the kilometres, to help support life-changing research into the prevention, treatment and finding a cure for MS.

Whether you are already signed up or simply curious about how movement can drive real change, this episode is a great source of inspiration to get involved.

For helpful MS contacts in your local area, visit our Support and Services page and check out MS Australia’s new Lifestyle Guide for people living with MS.

On today’s Raw Nerve, we present part two of an interview with Stephen Crawford, a Canberra-based artist and musician who lives with multiple sclerosis (MS).

In part one, Stephen shared with us his uniquely individual story – starting with his childhood in Scotland and moving to Australia in the 1980s – and many fascinating anecdotes, with his signature dark humour, resilience, and positivity.

Stephen creates artwork to help people understand what it’s like to live with MS. In this second part, Stephen discusses the intersection of MS and his art, and his plans for how he hopes to continue to educate and inform others. He introduces us to his art practice and methodologies, and where it all began, his painting journey, and what his artworks represent. He shares many references to popular culture and their link to MS, and colourful analogies to help describe what is going on inside his body. Stephen also talks about MS symptoms, his love of storytelling, the importance of fundraising for MS research, and advice for others newly-diagnosed with MS.

No two people experience MS in the same way, and so too everyone finds strength in their own way, as Stephen’s story attests.

If you listen carefully, you will hear that Stephen is drawing throughout the conversation. Below, we have included some of his artworks.

This episode includes mentions of injuries, medical procedures, and some dark themes, in the context of the interviewee’s unique life journey.

For helpful MS contacts in your local area, visit our Support and Services page and check out MS Australia’s new Lifestyle Guide for people living with MS.

Stephen Crawford's Art

On today’s Raw Nerve, we present part one of an interview with Stephen Crawford, a Canberra-based artist and musician who lives with multiple sclerosis (MS).

Stephen shares with us his uniquely individual story – starting with his childhood in Scotland and moving to Australia in the 1980s – and many fascinating anecdotes, with his signature dark humour, resilience, and positivity.

Stephen creates artwork to help people understand what it’s like to live with MS. In this first part, Stephen talks through his recent MS diagnosis, the process he went through, and life with a chronic illness. He also discusses symptoms, the impact of MS on his career and day-to-day work, and other elements of his life, dealing with adversity and various humps along his journey.

No two people experience MS in the same way, and so too everyone finds strength in their own way, as Stephen’s story attests.

If you listen carefully, you will hear that Stephen is drawing throughout the conversation. Below, we have included some of his artworks.

In a future episode, Stephen discusses the intersection of MS and his art, as well as his plans for how he hopes to continue to educate and inform others.

This episode includes mentions of injuries, medical procedures, and some dark themes in the context of the interviewee’s unique life journey.

For helpful MS contacts in your local area, visit our Support and Services page and check out MS Australia’s new Lifestyle Guide for people living with MS.

Stephen Crawford's Art

Join us for a special episode of the Raw Nerve Podcast as we celebrate excellence in MS Australia research, showcase exciting projects from our most recent MS Research Grant Round, and discuss the need for greater government investment in neurological research.

MS Australia has invested millions into funding and facilitating MS research in Australia and around the globe. Outside of government, we are the largest funder of MS research in Australia, having invested over $75 million to date.

In this episode of the Raw Nerve podcast we take you to Parliamentary Friends of MS event at Parliament House Canberra.

You’ll hear from Parliamentary Friends of MS Co-Chairs Senator Wendy Askew and Senator Deborah O’Neill and explore MS Australia’s research program with Dr Tennille Luker, Head of Research at MS Australia. Member for Griffith, Renee Coffey MP speaks about the value of MS research through the lens of lived experience and political representation. And Dr Monique Ryan, Independent Member for Kooyong discusses the critical importance of medical research and the need to unlock and invest more Commonwealth funding.

Useful links:

• MS Research Grants Announcement

Today’s Raw Nerve episode explores the major new report: Multiple Sclerosis Prevalence and Health Economic Impact in Australia 2025.

Released at MS Australia’s 2025 Progress in MS Research Conference, the report reveals that a record 37,756 Australians are now living with multiple sclerosis (MS) – a 13.3% increase in just three years since 2021.

The report is the third major publication on the cost of MS in Australia, commissioned by MS Australia and produced by the Menzies Institute for Medical Research at the University of Tasmania. The primary data source is the Australian MS Longitudinal Study (AMSLS).

Joining guest host Dr Fiona McKay, Deputy Head of Research at MS Australia are report lead author Dr Julie Campbell, Senior Research Fellow at the Menzies Institute for Medical Research, University of Tasmania; report author Professor Bruce Taylor, Neurologist and Academic Lead – also from Menzies and Dr Tennille Luker, Head of Research at MS Australia. Professor Taylor is also co-recipient of MS Australia’s 2025 MS Research Award, recognising more than 25 years of leadership in advancing MS research and improving outcomes for people living with the condition.

We wanted to help listeners understand a bit about the report and what it all means, including the impact of MS on quality of life and employment, what might be contributing to the increased prevalence of MS, key findings and recommendations for improving outcomes for those affected by MS and the importance of sustained and rigorous MS research funding and response.

For Dr Luker, the report is a clear, credible story of what MS looks like today in Australia: how people are affected, what MS costs and where the biggest gaps are and she shares many other key takeaways.

Also mentioned today is the Global MS Prevention Initiative which MS Australis is co-leading along with MS Canada, the important role of MS Nurses, Brain Health, PLATYPUS and the National Disability Insurance Scheme (NDIS) and its Agency (the NDIA).

Visit our Support and Services page for contacts in your local area and check out MS Australia’s new Lifestyle Guide for people living with MS.

Recorded live at MS Australia’s 2025 Progress in MS Research Conferencein 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.