The Raw Nerve

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 

Guests: 

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.

Useful links:

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 Emily Petricola who was diagnosed with MS at the age of 27 in 2007 and who shares how competing at the Paralympics as an elite para-cyclist for the Australian Cycling Team is more than an athletic pursuit, it is a profound personal victory.

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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The MS community is brimming with extraordinary people whose remarkable contributions inspire us all. To celebrate and recognise more of these outstanding individuals, MS Australia has renewed its annual award program in 2024.

Today we talk about the important change to the MS Australia Awards including two new awards open to public nomination, the remarkable legacy of the late John Studdy and why his namesake award remains our centrepiece, the reason for the expansion of the Awards and about the ‘quiet achievers’ – including many living with MS and doing remarkable work every day in MS research, MS advocacy; as volunteers and carers.

And we talk about how you can get involved and nominate these individuals for an MS Australia award.

Our three guests today are:

 All three have extensive and deep connections to MS and the MS community.

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In this episode of The Raw Nerve, we mark National Pain Week 2024 and explore an important subject area – chronic pain and MS.

Our introductory guest, Nicolette Ellis, Chair of Chronic Pain Australia explains to podcast host, Dr Julia Morahan, the focus of this year’s National Pain Week and the ‘painchanger’ theme which is focussed on the lived experience of chronic pain.  

For many people living with MS, pain is a constant. Pain covers a wide range of unpleasant physical sensations, but everyone – people living with or without multiple sclerosis – experiences it differently. Pain is one of the less recognised common symptoms of MS, with an estimated two-thirds of people living with MS experiencing pain. Deanna Renee, who has lived with MS for 18 years, shares her personal experience of chronic pain and the various strategies she uses to manage it. Dr. Alice Saul discusses the scientific aspects of pain in MS and the importance of research in improving quality of life for those living with MS. The episode concludes with a discussion on the social and emotional impact of chronic pain and the importance of community support.

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On this special episode of The Raw Nerve we mark World Brain Day, an annual event observed on July 22, aimed at promoting awareness and education for neurological disorders that affect individuals worldwide. 

Host Dr Julia Morahan reminds us that our brains are by far the most complex organs 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. A multitude of factors can affect our brain health even before we were conceived!

CEO of MS Australia and Chair of the Neurological Alliance Australia, Rohan Greenland explains the measures he is advocating for that will help progress research, support and services for millions of Australians living with a neurological condition and in turn, support their brain health.

Georgina Carr, Chief Executive, The Neurological Alliance England reveals her own success and challenges convincing decision makers about the importance of optimising brain health in the neurological community.

The episode concludes with Neurologist, Professor Tomas Kalincik, speaking optimistically and enthusiastically about the advancements and opportunities in brain health research.

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Content warning: The following video contains discussion of mental health issues and suicide. 

If you or someone you know is in need of support, contact Lifeline at 13 11 14 or visit ⁠www.lifeline.org.au⁠.

In cinemas on 22 August, Take My Hand is a powerful Australian feature film with multiple sclerosis as a central part of the storyline.

On a special episode of The Raw Nerve we talk to the creators, real-life partners and inspiration for the film.

Take My Hand Executive Producer Claire Jensz and her husband Writer and Director John Raftopoulos discuss the challenges of making the film and the very personal nature of sharing their real-life love story with the world.

Claire and John reflect on their own journey, Claire living with MS, and John in his role as a carer, and the impact it has had on their lives.

They also discuss the importance of raising awareness about MS and the insights they hope audiences will take away from the film; messages of hope and resilience as well as a better understanding of multiple sclerosis.

www.takemyhandthemovie.com

Jen Willis has fulfilled her childhood dream of learning to mountaineer. We first met Jen in January 2023 and on this latest episode of The Raw Nerve, she shares her journey, passion for mountains and climbing mountains, life with multiple sclerosis (MS) and her recent trek to Everest Base Camp with a group of others with MS from Australia, the UK and the USA, guides, and a cinematographer.

The acclimatisation needed to get to nearly 5,400 metres when you live with MS and come from sea level is astonishing. The trek up to Everest Base Camp and back is around 130-kilometre with steep hills, uneven ground and a constant increase in altitude. Jen and her co-trekkers carefully pushed through the everyday challenges of MS toward their dream of trekking and travelling in Nepal.

Passionate about helping others achieve their dreams, Jen talks about the power of shared experience and sharing the magic of mountaineering with others. Her many learnings along the way include leadership, guidance, living in the moment and how little steps can grow confidence and help to navigate life’s challenges. The trek ignited a sense of adventure in the group and being together in Nepal on World MS Day was extra special.

Jen talks through her mountaineering and other future plans, passion for awareness and fundraising for MS and MS research, the importance of taking seriously any early signs and symptoms and the self-drive that many feel as a result of living with a chronic, often invisible condition like MS.

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