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 MS
• Sally 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 MS
• Associate 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 Australia
• Professor 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 Wales
• Marianne 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 Wales
• Sharlene Brown - MS Australia Board Director, Chair of the MS Australia Awards Committee (which includes the John Studdy Award) and Chair of the Advocacy Committee

All 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 Survey

Dr 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 Glossary

• MS Australia Brain Bank
  
• 
  MS WIRE - MS Australia’s monthly newsletter
• Central nervous system - the brain, spinal cord and optic nerves
• PBMC - peripheral blood mononuclear cells
• Size exclusion chromatography – technique used to separate molecules based on their size
• Oligodendrocytes - 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.

Guests

• Dr Julia Morahan, Head of Research at MS Australia
• Dr Jo Gamble, Research Coordinator at MS Australia and one of the authors of the new Wellness Guide
• Deanna Renee, MS Australia LEEP Member, contributor to the new Wellness Guide and artist. 

Useful links:

• Living well with MS: Your guide to adapting your lifestyle
• Living well with MS website