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 CuddihyAn 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 RoseDiagnosed 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.