In this episode of The Raw Nerve, we dive into a compelling panel discussion from the Frontiers in MS Research Symposium on how emerging research and clinical trials are transforming the landscape of MS prevention, care and treatment.

Our expert panel, featuring researchers, clinicians, and individuals living with MS, addresses key questions shaping the future of MS care. We explore the most promising advancements in early detection and prevention, identify critical gaps in current care that research needs to address, and discuss how to balance immediate quality-of-life improvements with the long-term goal of finding a cure.

The conversation also highlights the challenges of translating groundbreaking research into everyday clinical practice and examines how clinical trials influence treatment decisions for those affected by MS.

Join us for an engaging exploration of the progress, challenges, and future directions in MS prevention and care.

In this episode of The Raw Nerve, host Jeremy Henderson sits down with Associate Professor Des Graham, the outgoing President of MS Australia.

As Des prepares to step down from his role on 28 November 2024,  he reflects on a rich career trajectory that has culminated in over a decade of distinguished leadership of the MS community in Australia.

The self-described ‘boy from the bush’ began his working life with a carpentry apprenticeship and has arguably been building something bigger and more valuable ever since.

From sheep shearing to nursing; ”a significant shift that lit a fire under me”, to a varied and distinguished career as a senior health bureaucrat, “I was a clinician who understood good governance”, and his latest career leading the MS community post his MS diagnosis, Des has always been driven by a desire to improve the health and welfare outcomes for people in the community.

Des discusses the achievements he is most proud of, including the merger of MS Research Australia and MS Australia,  the challenges and opportunities he has encountered while leading MS Australia, and how his lived experience with MS continues to shape his approach.

Join us for a heartfelt and insightful conversation with a dedicated advocate for the MS community, as Des shares his hopes for the future of MS research and treatment.

Episode Transcript

In this episode of The Raw Nerve, the panel discusses the new Crisis Toolkit to help people living with MS with crisis planning.

With summer fast approaching, it’s more important than ever to talk about crisis planning. Whether it’s preparing for heatwaves, bushfires, or any other emergencies, having a plan in place can make all the difference for people living with MS.

Dr Tennille Luker dives deep into emergency preparedness for people living with MS. Joining her to discuss crisis planning are Eilish Maguire from Australian Red Cross, Associate Professor Yvonne Learmonth from Murdoch University, Jane Gilliand an MS Nurse from MS Plus and Jenni Vanyai, who lives with MS.

The panel discusses the new and updated resources complementing the Australian Red Cross RediPlan, a disaster preparedness guide. Known as the “Crisis Toolkit”, these new and updated resources were developed by Yvonne and a team of researchers in collaboration with Australian Red Cross and MS community stakeholders, to help people living with a disability or a chronic health condition complete their crisis planning.

The panel shares their experiences with crisis planning, highlighting the benefits of the Crisis Toolkit, and offering valuable feedback on its impact.

On this episode of The Raw Nerve, host Dr Julia Morahan, Head of Research at MS Australia is joined by retired police officer, Michael Butler who lives with multiple sclerosis (MS), and his neurologist, Dr Jennifer Massey from St Vincent’s Hospital, New South Wales, for an in-depth conversation about Autologous Haematopoietic Stem Cell Transplant (AHSCT) and MS.

This episode is for those who want to understand more about AHSCT from an expert and hear from someone who has had the treatment in Australia.

Michael Butler has lived with MS for over 20 years and shares his incredible 2002 diagnosis story while a serving officer in the New South Wales police force. He talks through his subsequent MS journey and personal mantra for making the most of what you can rather than can’t do. Michael and his neurologist talk about his referral to Dr Massey’s clinic at St Vincent’s, his early days as a patient, treatment history and AHSCT journey.

Host Dr Julia Morahan explains AHSCT and provides insight into MS Australia’s involvement in AHSCT research nationally and internationally and registry of people that have been receiving this treatment in Australia – headquartered at St Vincent’s in Sydney - where MS Australia tracks the outcomes of Australians who have undergone this treatment for MS.

Detailing her considerations around presenting AHSCT as a treatment for those eligible while explaining the risks, Dr Massey says, “a big part of this treatment is about identifying people who are most likely to benefit, and that's where accumulating information and these registry studies are going to be most beneficial.” She shares advice for others considering AHSCT, especially the factors to weigh up if they are thinking of making this decision. And given the abundance of media about stem cells across a range of neurological conditions, not just MS, Dr Massey thinks, “having a good understanding of what this treatment is, what it can offer, what it can't offer, and the risks are really the key.”

Michael generously talks through and shares for listeners his decision to try the treatment and his preparation, journey, support networks and his life today.

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Currently AHSCT treatment is provided in Australia at St Vincent’s, Sydney and through two observational clinical trials at Austin Health, Melbourne and The Alfred, Melbourne (visit the MS Australia Clinical Trials Network website for more information) and by a small number of other centres on a case by case basis. These centres have strict eligibility requirements that have been set by the hospital ethics committees and may only apply to limited numbers of patients with MS. It is for this reason patients need to be referred to these centres by a neurologist, who can provide a detailed clinical history and MRI findings.

Acronym Glossary

In this episode of The Raw Nerve, we meet James Riley a young father from Ballarat, Victoria who works in the telecommunications industry and like the guest on our previous episode, is a passionate runner. James’s story is a little different, however. His running routine, his marathons and ultra marathons, were halted by an MS diagnosis, and now after over a decade, he has returned to running, albeit carefully and slowly. James recently completed a marathon, his first since his diagnosis and in April 2024 was profiled in his local Ballarat paper, The Courier, and his story has inspired many.

Diagnosed with MS in 2015, James shares with our Raw Nerve audience his lived experience of MS and its impact, in a deeply moving discussion with host Jeremy Henderson.

Passionate about empowering others with MS, James shares some of the strategies that have worked for him. He talks about living and working with MS, his diagnosis, disclosure, his passion for running, explaining MS to children, managing MS symptoms while training for and competing in a marathon, physical and mental health plus wellbeing, future goals and provides heartfelt advice for people newly diagnosed and starting their MS journeys. Today’s Raw Episode is with someone, an ordinary Australian, living his best life, managing his MS, slowly returning to something he loves and focusing on what he can do rather than what he can't.

Derek Stefureac was diagnosed with MS at age 39 after experiencing a sudden attack of numbness and paralysis. Though initially frightened and uncertain about his future, he became determined to take control of his health embracing positive lifestyle changes; quitting smoking and taking up running.

Despite early challenges Derek persisted with his running, completing his first marathon in 2018. Fast forward to 2024, and Derek may be the only person living with multiple sclerosis to have run a marathon on every continent. 

“I hope that I can be a good example or motivate or encourage anybody. It's not about running marathons. It's doing a little bit more than you did yesterday. And those days add up;  slowly in the beginning, but over time you look back and you can really see progress. Really, look at me, I had no idea I could run a marathon ever. Especially after I started limping after only one mile. It was very much – just focus on each day, be in the moment, and tackle what's in front of you.”

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In the latest episode of the Raw Nerve recorded on Friday 13 September, guests Julia Morahan and Heidi Beadnall sit down with the CEO of MS Australia to dive deep into the highlights of the upcoming ECTRIMS 2024 (18-20 September) – the world’s largest MS research congress. The event, attracting over 10,000 delegates from around the globe, serves as a crucial platform for researchers, clinicians, and healthcare professionals to explore and advance the latest in MS research and treatment. 

Join the discussion as they explore the revised McDonald Criteria, which bring updated diagnostic guidelines for MS, enhancing early diagnosis and tailoring treatment approaches. The discussion also covers the new Brain Health Report, offering valuable insights into recent findings on brain health and their implications for MS patients. The role of artificial intelligence in MS research is another focal point, with an examination of how AI is revolutionising research and developing new treatment strategies. The potential of Bruton's tyrosine kinase (BTK) inhibitors for treating progressive forms of MS is also highlighted, showcasing promising advancements in medication. Additionally, the episode addresses the impact of Vitamin D on MS, reviewing new research on how Vitamin D levels might affect disease progression and management. 

Tune in for an in-depth look at how global experts are working together to shape the future of MS care and research 

Host:  Rohan Greenland, CEO, MS Australia   

Guests:  

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In this heartfelt episode of the Raw Nerve, host Julia Morahan delves into the personal and pivotal experiences of living with Neuromyelitis Optica Spectrum Disorder (NMOSD). Joining Julia are Debbie and Alex, two remarkable individuals who share their journeys with NMOSD, shedding light on their daily challenges, and the vital role of timely, effective treatment in their lives. 

This episode also features a special guest from the Patient Voice Initiative, who offers insights into the importance of consumer consultation and patient advocacy as we approach a significant decision by the Pharmaceutical Benefits Advisory Committee (PBAC) on a new treatment for NMOSD. 

Through personal stories and expert analysis, we explore the profound impact NMOSD has on individuals, the strength required to navigate a diagnosis, and the importance of community and healthcare support. Debbie and Alex’s narratives highlight the realities of those living with NMOSD and underscore the hope that advancements in treatment and advocacy can bring. 

Tune in to gain a deeper understanding of NMOSD, the ongoing fight for better treatment options, and the power of collective advocacy in shaping a brighter future for those affected by this challenging condition. 

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Host: Dr Julia Morahan, Head of Research, MS Australia 

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In this episode of The Raw Nerve, we mark Women’s Health Week 2024 and explore multiple sclerosis, the lived experience of MS and women’s health. This in-depth, powerful episode is tailor-made for people living with or newly diagnosed with MS, those curious to learn about MS, also MS research.

Joining our host, MS Australia Board Director Sharlene Brown, today’s guests include Lilian Law, a young Australian about to commence working in law in New York and Ebony Moffat, Communications Officer for MS Australia. Sharlene, Lily and Ebony live with MS. Our other guest, Dr Julia Morahan, Head of Research, MS Australia, shares fascinating insights into MS research and about some of the clues we have to solve the puzzle of why three out of four people who develop MS are women.

With warmth and kindness, Sharlene, Lily and Ebony discuss their lived experience of MS and Dr Morahan talks through MS research in particular pertaining to women.

Women’s Health Week 2024 shines a spotlight on some of the biggest issues in women’s health, under the banner of ‘Your voice. Your choice’. Our host and guests explore how some of these issues, including Women’s Health Week’s Tuesday topic ‘Courageous Conversations’, relate to MS and how they are experienced by women living with MS.

Passionate about empowering other women with MS, Ebony, Lily and Sharlene generously share some of the strategies that have worked for them. Our guests discuss the importance of early diagnosis, support networks and finding the right healthcare team, namely GPs, neurologists, MS nurses and other important health professionals to help in the treatment and management of MS.

Dr Morahan talks about some of the hoped-for new research focus areas to address research gaps for women living with MS, which MS Australia and other MS organisations around the world are trying spotlight.

Women with MS are first and foremost women, and today’s Raw Nerve episode provides some vital health messages, for example when you’re living with MS, conditions other than MS can affect your MS. Our guests also share tips to help manage the impact of MS on one’s daily life.

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The Paris Paralympic Games from 28 August to 8 September will feature more than 4,000 athletes from around the world, including 160 Australian athletes competing in 17 sports. 

In this special two-part episode of The Raw Nerve, host Jeremy Henderson chats with two-time Paralympian Emily Petricola OAM PLY (cycling) and first-time Paralympian Ameera Lee (archery) to explore what it means to wear Green and Gold in the Paris Paralympic Games, while living with multiple sclerosis (MS).

This episode features Ameera Lee, an Administration Secretary with NSW Health and single parent, on the cusp of achieving a lifelong dream. Diagnosed with MS in 2012, Ameera took up para-archery in 2016 at the age of 40, and by 2023, her performance at the 2023 Para-archery World Championship in the Czech Republic, earned her a Paralympics quota spot for Paris 2024, in her classification.

Our Paralympians share their team selection and MS stories, diagnosis journeys, how MS impacts their daily and athletic lives and discuss their love for their individual sports. Emily and Ameera also tell us about symptom management, managing fatigue and heat while training and competing, and about the joy of representing Australia in Paris.

Tune in to all the action from the Paris Paralympic Games on Nine Network and Stan from 28 August.

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