The Raw Nerve (MS Australia)

On the eighth episode of the Raw Nerve Podcast, co-host Rohan Greenland laces up his runners ahead of the May 50k and discusses the inspirational lengths that Aussies will go to, to raise vital funding for MS Research.

He’s joined by Samantha Billington from Darwin. Living with MS, Samantha has led an extraordinary May 50K fundraising effort over the last two years. In 2022, with the support of Darwin radio station Hot 100 she and radio personality Brent Watkinson put their May 50K challenge front and centre on a treadmill in a local shopping centre. This year Samantha is hoping her team can walk or run more than 15,000km.

Rohan chats with MS Plus May 50K Program Manager Lauren Hawkins and finds out just how easy it is to sign up and take part in the May 50K

He also speaks with Dr Yvonne Learmonth, an MS Australia fellowship recipient, from Murdoch University about exciting research in the area of physical activity, movement, and exercise, and its critical importance to people living with MS.

Related Links:

• The May 50K
• Engaging the MS Community to Promote Exercise

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:

• ⁠Paralympics Australia: Ameera Lee

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.

Useful Links:

• MS Adventure
• MS Adventure Facebook

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.

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.

Key Topics

• The lived experience
• Health management
• Consultation process

Useful Links

• MS Australia: Autologous Haematopoietic Stem Cell Transplant (AHSCT) Website
• MS Australia AHSCT Position Statement
• Episode Transcript

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

• MS – multiple sclerosis
• AHSCT - Autologous Haematopoietic Stem Cell Transplant (sometimes referred to as HSCT)
• MRI – magnetic resonance imaging
• PIRA – progression independent of relapse activity

This National Carer’s Week (Sunday 15 to Saturday 21 October), we welcome Paul Koury and Briana Blackett – two passionate advocates for unpaid carers with first-hand but vastly different experience.

As we found out in part one, Paul Koury lives with multiple sclerosis (MS) and after being a carer for his mother and navigating the aged care system, founded the Australian Carers Guide – a publication to help others navigate the carer journey.

Paul balances the challenges of life with MS with the busy demands of publishing and is devoted to sharing his knowledge and experience of caring and that of others, with the Australian community. For Paul, knowledge is power and carers need helpful, practical information and to be able to care for themselves. In part two, Paul shares more about living with MS as a mostly invisible disease and how that impacts him.

Briana Blackett is a carer to her two sons who live with disability and complex needs. Briana has much to share about the challenges and complexities of being a carer as a solo parent, pros and cons, her tips and coping-strategies and the many rewards to be gained.

Briana openly shares the many lessons she has learnt about caring, what does and doesn’t work, the importance of self-care, asking for help, support networks and how to make your situation work for you. In part two, Briana also delves into inclusivity, adaptability and home modifications for disability, and why it is so important for carers to ask others for help.

On this special two-part episode of the Raw Nerve, host Phil O’Neil chats with Paul and Briana and finds out about the carer role and the importance of caring for the carers.

Useful Links:

• National Carers Week
• Australian Carers Guide⁠

On the latest episode of the Raw Nerve we're joined by Lynda MacCallum, a professional cutting horse trainer, accredited health and wellness, coach wife and mother of two.

A former high school teacher. Lynda has a passion for teaching and an interest in nutrition, fitness and health.  Lynda believes that if we focus on our health, our well-being and developing a strong mindset, anything is possible.

We'll talk to Lynda about her 2018 MS diagnosis, how she copes with the physical challenges of a big horse cutting event, and about her passion for horses. “Cutting gave me a goal and a purpose, something to focus on every day, even when things got tough.”

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

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.”

Useful link:

• ⁠An MS diagnosis 'scared' him to get more active. Now he's done marathons on all 7 continents.

Cassidy Krygger, is a young Australian actor, screenwriter and producer and the founder of viral Instagram account Hollywoodland Photos.

Diagnosed with MS in 2018, Cassidy is determined to live a full life with her disability, but to also educate, support and inspire other young people newly diagnosed with MS.

The Raw Nerve spoke to Cassidy, buoyed by the recent success of her short film Daisy. Written and produced by Cassidy who also stars in the film, Daisy has taken home Best International Short Film – GLIFF, Best Short Film- Athens Film and Art Festival and a Best Actress award for Cassidy at the Golden Film Awards, Italy.

Useful links:

• Daisy trailer
• Hollywoodland - The Podcast
• @hollywoodlandphotos
• Chronic Convos: MS with Cassidy Krygger
• Chronic Convos: MS with Dr Julia Morahan, Head of Research, MS Australia
• Australian Short Film “Daisy” Takes Home Two International Film Awards

Livestreamed on World MS Day, our ‘Understanding MS Diagnosis’ Forum featured MS clinicians, researchers and members of MS Australia’s National Advocates Program and Lived Experience Expert Panel (LEEP).

This informative and lively discussion explored the importance and future of early diagnosis and treatment in MS. Panel members living with MS shared their diverse diagnosis journeys.

The Forum coincided with the release of a new MS Australia report calling for faster MS diagnosis in Australia.

Host, MS Australia CEO Rohan Greenland and our five expert guests provide a deep dive into MS diagnosis, and we invite you to tune in!

Useful Links:

• MS Australia My Diagnosis Campaign Website

Diagnosed 13 years ago with MS, Justine Martin was told by her neurologist that she wouldn’t work again.

Undeterred Justine has found purpose in helping other people through telling her story and giving them hope. Along the way Justine has earned recognition and many awards, as an accomplished speaker, life coach, artist, author, publisher, teacher, and entrepreneur.

Now she’s combined all of those passions and skills to shed light on the resilience of other Australians, with her latest publishing venture; a new book that brings together the stories of 26 extraordinary authors who've bravely shared their unique experiences and journeys living with multiple sclerosis.

Useful link:

Whispers Of Resilience: Our MS Stories

Sophie Drummond, MS Plus Senior Campaign Coordinator for The May 50K is a keen participant as is Dr Tennille Luker, Deputy Head of Research at MS Australia.

On the Raw Nerve this week, host Rohan Greenland, CEO of MS Australia (another passionate May 50K participant) sits down with Tennille and Sophie, who lives with MS, to discuss how The May 50K works, exercise and MS and to hear about some of the exciting MS research projects that benefit directly from funds raised through The May 50K.

Useful links:

• The May 50K
• PLATYPUS

On the 13th episode of the Raw Nerve Podcast, co-host Phil O’Neil talks with MSWA Chair and MS Australia Board Director, Horst Bemmerl about his life with multiple sclerosis (MS) and his incredible journey, from diagnosis, and its inevitable challenges, to positivity and living a life devoted to educating, raising awareness and helping others with the disease. 

Phil and Horst discuss their respective MS diagnosis journeys and find a mutual connection as Horst shares tales about some of his extraordinary endeavors, including most recently in Malaysia. 

Join Phil and his guest Horst as they chat openly about challenges and wins while living with MS, symptoms, managing MS, the impact on family, and the incredible advances in MS research, advocacy and future plans. 

Related Link:

• Episode transcript

This National Carer’s Week (Sunday 15 to Saturday 21 October), we welcome Paul Koury and Briana Blackett – two passionate advocates for unpaid carers with first-hand but vastly different experience.

In this special two-part episode of the Raw Nerve, host Phil O’Neil chats with Paul and Briana and finds out about the carer role and the importance of caring for the carers.

Paul Koury lives with multiple sclerosis (MS) and after being a carer for his mother and navigating the aged care system, he founded the Australian Carers Guide⁠ – a publication to help others navigate the carer journey.

Paul balances the challenges of life with MS with the busy demands of publishing and is devoted to sharing his knowledge and experience of caring and that of others, with the Australian community. For Paul, knowledge is power, and carers need helpful, practical information and to be able to care for themselves.

Briana Blackett is a carer to her two sons who live with disability and complex needs. Briana has much to share about the challenges and complexities of being a carer as a solo parent, pros and cons, her tips and coping-strategies and the many rewards to be gained.

Briana openly shares the many lessons she has learnt about caring, what does and doesn’t work, the importance of self-care, asking for help, support networks and how to make your situation work for you.

On this special two-part episode of the Raw Nerve, host Phil O’Neil chats with Paul and Briana and finds out about the carer role and the importance of caring for the carers.

Useful Links:

• National Carers Week
• Australian Carers Guide⁠

On the third episode of the Raw Nerve, co-host Phil O’Neil catches up with Jennifer Willis, ahead of her attempt to become the first Australian living with MS to reach the top of Mount Everest.

Diagnosed with MS in 2018 Jen was determined to learn how to mountaineer and to fundraise for MS research. Now she’s about to embark on a 51-day expedition that will see her combine those two ambitions.

Jen talks openly about her personal ‘road to diagnosis’ and the challenge posed by both extreme heat and extreme cold when climbing in the Himalayas. Be inspired as Phil and Jenn talk about overcoming fear, realising dreams and the metaphorical ‘mountains’ we all have to climb.

Useful links:

• www.helpcurems.com
• www.msaustralia.org.au/donate
• Episode Transcript

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

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:

• Rachel Kerr, 2023 John Studdy Award Winner and MS Queensland Ambassador
• Sharlene Brown, MS Australia Board Director and Chair of both the John Studdy Selection Panel and Advocacy Committee and
• George Pampacos, MS Australia Deputy Chair, Chair-elect and 2021 John Studdy Award co-recipient.

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

Useful links:

• MS Australia Awards
• Honouring a passionate MS advocate: John Studdy
• Media Release: Award for providing a voice to people living with MS in the Queensland community

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.

Host

• Dr Julia Morahan, Head of Research, MS Australia

Panellists

• Nicolette Ellis Chronic Pain Australia Chair
• Deanna Renee has lived with MS for 18 years. She is a mental health clinician and advocate. An MS Australia National Advocate, LEEP (Lived Experience Expert Panel) member and advocate for our Member Organisation, MS Plus
• Dr Alice Saul is Postdoctoral Research Fellow in Multiple Sclerosis Research at the Menzies Institute for Medical Research, University of Tasmania

Key links: 

• National Pain Week 2024
  
• 
  About Dr Alice Saul
• 
  MS Australia pain webpage
  
• 
  Deanna’s Instagram

On the sixth episode of the Raw Nerve, co-host Phil O’Neil catches up with MS advocate a para-cycling world champion Emily Petricola about her inspirational MS journey, her international cycling success and how the two are inextricably linked.

Emily was diagnosed with MS in 2007 at 27 years of age. She talks openly about her treatment, her newfound perspective and the competitive cycling road and goals still ahead.

“Until the day comes where I don't feel that same passion or drive and desire to be the best that I can be, or my body starts to fail maybe beyond the point where I can ignore it, then that's what I'll be doing.”

Related links:

• MS Australia Media Release
• ABC Video
• ABC Online
• Episode Transcript

In this episode of the Raw Nerve, host Jeremy Henderson sits down with journalist, producer and Mum of two, Brooke Campbell Bayes.

Brooke was recently diagnosed with MS. On the podcast Brooke delves into her recent Sydney Morning Herald series that highlights chronic disease and disability, and discusses her insightful interview with legendary Australian comedian Tim Ferguson.

Brooke discusses the importance of showcasing the realities of living with chronic illnesses and disabilities, emphasizing the often-invisible struggles faced by individuals. She shares the overwhelmingly positive public reaction to the series and the profound impact it has had on raising awareness and understanding.

Throughout the episode, Brooke reflects on the optimism and resilience of the people she interviewed, who find silver linings in their challenging situations. “I’ve just been blown away by the rawness and the honesty of all the beautiful people that I’ve spoken to,” she says. Their stories are both uplifting and inspiring, offering a raw and honest glimpse into their lives.

Join us for an enlightening conversation that sheds light on the experiences of those living with chronic illnesses and disabilities, and the power of storytelling in fostering empathy and awareness.

Useful links:

• Fully Sick podcast episode
• The Sydney Morning Herald: Tahlia had a stroke at age 10. Today, doing her own hair is an accomplishment

Join host Phil O'Neil in an extraordinary conversation on the 15th episode of Raw Nerve Podcast, where two remarkable Australians, Bronwyn Saunders and Chris Morgan, share their inspiring journeys with multiple sclerosis (MS). Despite facing unexpected MS diagnoses, both Bronwyn and Chris have defied the odds and accomplished incredible feats. 

Bronwyn Saunders, a children's author, opens up about her own MS diagnosis two decades ago and how she has not only thrived but also achieved her lifelong goal of becoming an author.  

Meanwhile, racing champion Chris Morgan discusses the life-changing moment he received his MS diagnosis in 2016. He delves into the strategies he has employed to effectively manage his condition and emphasises how he has successfully pursued his dreams despite the obstacles. 

In this engaging episode, you will discover how Bronwyn and Chris came to terms with their MS diagnoses and witness the incredible ways they are living their lives to the fullest.  

Be prepared to be inspired as they share their heartfelt messages of hope and resilience with others on their own MS journeys. 

Related links:

• Episode transcript
• Bronwyn Saunders, MS Ambassador 
• Chris Morgan on Instagram: @morgs959 
• Chris Morgan, Tuff love  

Joe Vargetto is a Melbourne chef and owner of celebrated restaurant Mister Bianco which offers Southern Italian and Sicilian-inspired dishes, reflecting Joe’s heritage. A keen cyclist, Joe has epic stories to tell about his food career and restaurant journey and his 2015 MS diagnosis.

On The Raw Nerve this week, host Jeremy Henderson, Head of Advocacy at MS Australia sits down with Joe in his restaurant in Kew, at the famed ‘Table 20’, to discuss cycling, working in a kitchen while living with MS, Joe’s food passions, inspirations, family life and about the expanded Mister Bianco.

Useful links:

• https://misterbianco.com.au
• @misterbiancokew
• 
  Facebook

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 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.

Host

• Dr Julia Morahan, Head of Research, MS Australia

Panellists

• Rohan Greenland, CEO, MS Australia and Chair of the Neurological Alliance Australia
• Georgina Carr, Chief Executive, The Neurological Alliance England
• Professor Tomas Kalincik, Dame Kate Campbell Professorial Fellow, Director | Neuroimmunology Centre | Department of Neurology | Royal Melbourne Hospital and Head | Clinical Outcomes Research Unit | Department of Medicine | University of Melbourne

Useful links:

• Brain health report
• Why is brain health important in MS?
• Optimizing brain health across the life course: WHO position paper

Dr Heidi Beadnall is a New South Wales-based neurologist (brain specialist) and researcher with special interests in multiple sclerosis (MS), neuroimmunology and general neurology. At the Brain and Mind Centre, the University of Sydney, Dr Beadnall works as part of the Royal Prince Alfred Multiple Sclerosis Clinic.

Almost seven years ago, Dr Beadnall first guided and supported broadcaster Phil O’Neil, newly diagnosed with MS, providing a tailored treatment and management plan and other essential advice. Dr Beadnall continues to treat, educate and support Phil and other people living with MS.

In this first of two episodes, The Raw Nerve host Phil O’Neil speaks to his neurologist – and MS researcher - Dr Heidi Beadnall about her work, how to prepare for your first visit(s), what to expect, questions to ask and other tips.

Useful Links:

• Dr Heidi Beadnall
• Using automated quantitative brain MRI measures in MS clinical practice
• Multiple Sclerosis clinic, Brain and Mind Centre

On this, our second episode of the Raw Nerve, we’re delighted to introduce the Podcast’s new co-host, Phil O’Neil.  You may know him as ’Ugly Phil’. He’s currently hosting Mornings on WSFM in Sydney and he’s a veteran Australian radio broadcaster. Phil’s going to add his wealth of broadcasting experience together with his unique insight as a person living with MS. Today we put Phil into the Guest hot seat to talk about his own MS journey. Phil chats candidly with our host Rohan Greenland and MS Australia’s Dr Therese Burke, an MS Certified Nurse, about how he’s navigated the challenges of MS, what he’s learnt along the way, his infectious positivity and his desire to give back to the MS Community.

Useful link: 

What is MS?

Episode Transcript

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

On the 9th episode of the Raw Nerve Podcast Phil O’Neil chats with Felicity Perdue from Hobart about her preparations for the May 50K, and her very personal motivation to raise money for MS Research.

The May 50K is now underway and Felicity, who was diagnosed with MS in 2019 is taking part for herself, for her late mother and for all those living with MS. Felicity sits down with Phil to talk about her family’s MS journey, what makes her thankful, and how she’s navigated her MS.

Related Links:

• ⁠The May 50K ⁠
• ⁠Engaging the MS Community to Promote Exercise
• Episode Transcript

On the seventh episode of the Raw Nerve, co-host Rohan Greenland chats to Dr Tim Coetzee, the Chief Advocacy Services and Science Officer for the National MS Society and MS Australia Head of Research Dr Julia Morahan ahead of an important international summit to be held in New York in early May.

To accelerate MS cures, the National MS Society is convening scientific, medical and public health leaders to contribute to the most promising pathways to cures and to cultivate global collaboration in pursuit of cures.

MS Australia is proud to have joined with 29 other MS Societies, Allied Groups and Professional Organisations to endorse the Pathways to Cures roadmap.

In New York, leaders, including MS Australia President Associate Professor Des Graham, Rohan and Julia will join others from the international MS research community to have an important conversation about where we need to go in MS research to continue this incredible transformation that we have seen in MS treatment over the last thirty years.

Tim notes that “…now it's time for us to actually start focusing on, how do we stop this disease before it really becomes even more present than it is? How do we restore people to what they've lost? So how do we repair? How can we regenerate? And then can we get to a point where we actually can conceptualize a world where, when we say we have a world free of MS, it means there's no more new cases of MS?”

Related links:

• Pathways to cure

Caro Llewellyn, author, advocate, and business executive, discusses her journey with multiple sclerosis (MS) in an interview on The Raw Nerve podcast. Llewellyn talks about her upbringing in a creative environment, her career in publishing and her love of books, and the challenges she faced after being diagnosed with MS in 2009.

Lewellyn also discusses her father's experience with polio and how it influenced her own perspective on disability. She emphasises the importance of open and honest dialogue about the difficulties of living with MS. “I think the more honest we are, the more people understand about it. And…people who get MS will be able to not feel so alone.”

Useful links:

• Diving into Glass

• Diversifit

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, 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.

Key links: 

• Women’s Health Week 2024
• MS Australia support and services webpage
• Why are three out of four people who develop MS women? By Dr Julia Morahan

On the 12th episode of the Raw Nerve Podcast, guest host Jeremy Henderson, MS Australia’s Head of Advocacy, had the privilege of speaking with three dedicated MS Nurses about the invaluable work they do and the remarkable connection they form with their patients.

In the lead up to World MS Day, Jeremy speaks candidly with Belinda Bardsley, Tim O’Maley and Emma Christian about the role of an MS Nurse, the remarkable holistic care provided to people living with MS, together with the ongoing and important bond formed with their patients and their families over a long period of time.

With the launch of MS Australia’s campaign, MS Nurses – Life-Changing Care, Belinda, Tim and Emma discussed the enormous challenges in Australia given the current shortage of MS Nurses and the dire need for this campaign.

Related links:

• MS Nurses
• Episode Transcript

In this episode of "The Raw Nerve," CEO of MS Australia, Rohan Greenland and the Head of Research, Dr. Julia Morahan, discuss the upcoming Progress in MS Research conference, highlighting key themes, international and Australian speakers, and showcase groundbreaking research in areas such as health behaviour, myelin repair, and neuroimmunology.

This episode emphasises the conference's unique format, which includes opportunities for the MS community to actively participate. The title "Pioneering Progress: Insights into MS Australia's iconic Research Conference" perfectly captures the essence of the discussion.

Useful Links:

• www.msaustralia.org.au/register

In this episode, we chat with Chris Henderson, a former Richmond wheelchair football champion who recently took on the role of Player Coach at Essendon. Chris shares his inspiring MS diagnosis story and of finding renewed purpose through wheelchair football.

We delve into the exciting world of this dynamic sport, learning about its unique rules and the incredible athleticism of its players. Chris also discusses his passion for inclusivity and how he's using his platform to educate young people about disability through his work with the Freedom Sports Foundation.

This insightful conversation offers a glimpse into the challenges and triumphs of living with MS and the power of sport to connect, inspire, and change lives.

Join our host, MS Australia CEO, Rohan Greenland and guests, Dr Julia Morahan, MS Australia’s Head of Research, and Dr Therese Burke, an MS Certified Nurse and MS Australia’s Clinical Platform Coordinator.

In this, MS Australia’s inaugural ‘The Raw Nerve’ Podcast, Rohan and guests discuss some of the big issues showcased at the world’s largest MS Research Conference - ECTRIMS 2022, the 27th Annual Conference of the European / committee for Treatment and Research in Multiple Sclerosis.

Rohan speaks with Therese about a workshop highlighting the critical importance of MS Nurses in ensuring the best possible outcomes for people living with MS. (01:28)

Also announced at ECTRIMS – the results from PREVANZ – an MS Australia clinical trial examining whether vitamin D supplements prevented MS development in people at high risk. As Rohan and Julia explain; the findings raise many interesting questions. (06:23)

Other ECTRIM highlights discussed this week; paediatric onset MS (11:19), the importance of early detection of MS (12:13), an introduction to Adaptive Clinical Trials – a new way of looking at clinical trials (20:05), and finally, a look at behavioural risk factors for MS (21:54)

Related Links:

• Landmark report on MS Nurse Care in Australia released
• World first clinical trial finds Vitamin D supplements do not prevent the development of MS
• Episode Transcript

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

On the 11th episode of the Raw Nerve Podcast, co-host Rohan Greenland talks with three people heavily involved in the development of a new MS Australia video resource developed to help the community gain a better understanding of multiple sclerosis.

Rohan is joined by Couch Creative creative director Mike Sarah, and two of Rohan’s MS Australia colleagues who contributed clinical and lived-experience expertise to the project; Dr Therese Burke, an MS Nurse and former president of MS Nurses Australasia, and Andrew Potter who lives with MS.

Join Rohan and his guests as he discusses the challenge of explaining a complex disease in simple ways that are easy to understand, and of using a largely visual medium to explain what, are often invisible symptoms.

Related Links:

What is MS? Video

Episode Transcript

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.

Useful links:

• Paralympics Australia: Emily Petricola

In August 2018 Cate Green experienced a painful back spasm while at a spa in Daylesford. By the following month Cate had been diagnosed with MS.  A particularly severe relapse that same month left Cate temporarily paralysed from the neck down. “So I lost both arms, legs bowel and bladder, and that put life in perspective for me.”

Today five, years on Cate is about to embark on her biggest challenge, tackling El Camino, a bike ride of over 700 kilometres which will see Cate cross the border between France and Spain, ride over the Pyrenees. and all the way to the Atlantic Ocean on the Northern Coast of Spain.

On this 16th episode of the Raw Nerve, we catch up with Cate in London, ahead of her grand adventure. We discuss the fine line between courage and insanity, the challenges of running a small business with MS, her personal motivations, and her message of hope for anyone facing adversity.

You can follow Cate Green’s progress on her Facebook page: The black cockatoo

On this special episode of The Raw Nerve podcast, recorded at the 2023 Progress in MS Research Conference in Perth, we take a deep dive into PLATYPUS, Australia's groundbreaking adaptive clinical trial for progressive MS.

Dr Julia Morahan, Head of Research at MS Australia, guides us through a captivating discussion with the brilliant minds steering PLATYPUS—Professor Jeremy Chataway of University College London, Chief Investigator of the UK's OCTOPUS trial, and Professor Simon Broadley from Griffith University, overseeing PLATYPUS.

Hear the fascinating story behind PLATYPUS's genesis and how it could reshape the future of progressive MS treatment. The discussion goes into the origins of PLATYPUS and the advantages of its innovative multi-arm, multi-stage trial design, along with the pivotal role played by the MS Community in shaping and overseeing the trial.

As we conclude, our guests share their ultimate dreams of what PLATYPUS and OCTOPUS could ultimately achieve.

Useful link:

• PLATYPUS

Brisbane-based author Carmel Charlesworth describes herself as an authenticity advocate - she empowers others to see their beauty and shows them how to be their authentic selves. Diagnosed with MS at the age of 37, in her chapter from the book Extraordinary Carmel details the emotions she faced after her MS diagnosis, what got her through and the impact on her life, employment, and family.

An MS advocate, speaker, and mother to two boys, Carmel has fulfilled a lifelong dream to write. In her first work, the chapter Union of Purpose in Extraordinary, she reflects on her MS symptoms – the signs, hints and clues that fortunately led to an early diagnosis, when so many others wait too long.

On the Raw Nerve this week, host Jeremy Henderson, Head of Advocacy at MS Australia talks with Carmel about her passions and busy life, writing work (including a new project about life after her MS diagnosis), health, wellbeing, finding balance and her multiple sclerosis journey.

Useful links:

• Facebook
• Carmel Charlesworth is Extraordinary
• Extraordinary: Inspiring stories of living and loving beyond the label

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:  

• Dr Julia Morahan, Head of Research, MS Australia  
• Dr Heidi Beadnall, is a New South Wales-based neurologist (brain specialist) and researcher with special interests in multiple sclerosis (MS), neuroimmunology and general neurology. At the Brain and Mind Centre, the University of Sydney, Dr Beadnall works as part of the Royal Prince Alfred Multiple Sclerosis Clinic. 

Useful links: 

• ⁠ECTRIMS Conference 2024 | Copenhagen 18-20 September | ECTRIMS⁠ 
• ⁠⁠Dr Heidi Beadnall⁠⁠ 
• ⁠⁠Using automated quantitative brain MRI measures in MS clinical practice⁠⁠ 
• ⁠⁠Multiple Sclerosis clinic, Brain and Mind Centre⁠ 
• ⁠At MS Australia, Brain Health is integrated into everything we do⁠ Video 

On the fifth episode of the Raw Nerve, co-host Rohan Greenland is joined by MS Australia President, Associate Professor Des Graham to explore a new report commissioned by MS Australia and undertaken by the Menzies Institute for Medical Research at the University of Tasmania, which has found the number of Australians living with multiple sclerosis (MS) is increasing at a significant and accelerating rate.

To help unpack the findings, report authors Principal Research Fellow at the Menzies Institute for Medical Research and Clinical Neurologist at the Royal Hobart Hospital, Professor Bruce Taylor and Head of the Health Economics Research Unit at Menzies and lead author of the report, Professor Andrew Palmer sit down with Rohan and Des to discuss the findings in detail, to examine the many lifestyle and behavioural risk factors that may contribute to a person developing MS, and to discuss the economic impact MS has on Australian society.

Just as important as exploring the why, Des and Rohan discuss what the Government must now do in response to this concerning new data.

Links:

• MS Australia Media Release
• ABC Video
• ABC Online
• Episode Transcript

On the 10th episode of the Raw Nerve Podcast, friend of the show, Tim Coetzee, Chief Advocacy, Services and Science Officer at the National MS Society takes the reins, coming to us from New York, where the Pathways to Cures Global Summit wrapped last week. The summit brought together 189 leaders from the global MS movement, representing 15 countries and 20 organizations that endorse the Pathways to Cures roadmap, to focus on how we can find solutions to MS. Tim sat down with two members of the MS Australia delegation, President Des Graham and Head of Research Julia Morahan for their reflections on the Summit and to discuss the importance of collaboration in international efforts.

Related Link:

Episode Transcript

On this, the fourth episode of the Raw Nerve, co-host Phil O’Neil speaks with Art Alexakis, lead singer of American Rock band Everclear, currently touring Australia. Everclear was formed by Art in Portland Oregon in 1991. The band’s first three albums went platinum and the band has sold over 6 million records.

Beyond knowing each other off and on for over 30 years, and their involvement in the music industry, Phil and Art share an even bigger connection, having both been diagnosed with MS in 2016.

Art talks openly about his diagnosis, how his MS affects him when touring and performing, and about being of service to others.

Related links:

• Everclear Australian Tour
• For people with MS 
• Episode Transcript

Count Us In: Neurological Alliance Australia Summit, Parliament House, Canberra – Tuesday 25 June 2024

At a landmark summit in Canberra, Neurological Alliance Australia hosted a panel of people with lived and carer experience, to call attention to the needs of millions of Australians living with neurological conditions, at the launch of the Count Us In campaign.

Neurological conditions are on the rise in Australia and globally, and yet, despite being recognised as one of this country's top disease burdens, neurological conditions remain under-recognised and underfunded.

On the Raw Nerve this week, summit facilitator Virginia Haussegger and guests hear powerful stories about multiple sclerosis, Parkinson’s disease, childhood dementia and motor neurone disease, some of the many hundreds of neurological conditions which as a collective, require urgent recognition and attention. Among many touchpoints, you will hear panellists discuss the impact of neurological conditions on self and families, diagnosis, caring for family members with lived experience, the NDIS and the critical importance of research and funding for research.

Acronym glossary:

• NDIS = National Disability Insurance Scheme
• NDIA = National Disability Insurance Agency
• EB = Epstein-Barr (virus)
  

Useful links:

• Count Us In Campaign page

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.

MS Australia has funded a record number of 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, on this, our 50th episode, as we delve into four exciting new research projects and talk with the researchers from around the country who are leading this work.

Dr Seyhan Yazar from the Garvan Institute of Medical Research & the University of New South Wales is investigating the early symptoms of MS by analysing large datasets and identifying blood biomarkers, with the goal of enabling faster, more accurate diagnosis.

Associate Professor Yvonne Learmonth from Murdoch University leads a new Western Australian-based research initiative developing a co-designed toolkit to provide doctors and nurses with practical resources to encourage and support exercise for people with MS.

Dr Iain Comerford from the University of Adelaide is exploring how immune cells, such as neutrophils and T cells, drive inflammation in MS. The research aims to understand how these cells interact in order to identify new treatment targets that could protect nerve cells from damage.  

Dr Jessica Fletcher from the Menzies Institute for Medical Research at the University of Tasmania leads a research project designed to help the brain repair itself by activating its own healing processes. This pioneering work will examine how to activate the brain’s natural repair system by boosting the activity of myelin-producing cells, called oligodendrocytes, to encourage new myelin growth.  

And joining with us to help unpack this work and its impact,  and to discuss the MS Australia research program, is MS Australia’s Head of Research Dr Julia Morahan.

Acknowledgements:

The March Grant Round was made possible by the brilliance of our researchers, the dedication and support of our Member Organisations – MSWA, MS Plus, MS Queensland and MS SA & NT – and the incredible support from donors, fundraisers and the entire MS community. 

MS Australia wishes to thank and acknowledge MSWA for its additional support. MS Australia’s largest ever funding round in terms of the number of projects has been made possible thanks to the investment and support of MSWA. 

In addition to its normal contribution to MS Australia research, MSWA contributed a further $2.4 million dollars into this grant round which allowed for the funding of an additional 10 of the 35 funded projects, guaranteeing important MS research would commence, not just in Western Australia, but throughout the country. 

Useful links:

• MS Research Grants Announcement
• Media Release 
• Research Snapshot
• Research Projects

Andrew Potter and Ebony Moffat share three things in common; an employer, a neurological condition, and a passion for raising awareness of multiple sclerosis and advocating for those living with MS.

On the Raw Nerve this week we sit down with two members of the MS Australia Advocacy team to discuss their work, MS Australia’s commitment to embedding and leveraging lived experience meaningfully and effectively, working with a disability, and the lessons they have both learnt along the way.

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. 

Useful links:

• New NMOSD medication to be considered at November PBAC meeting
• MS Australia NMSOD webpage
• Patient Voice Initiative: Advocating patient participation in Australia 

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

Guests: 

• Alex Raleigh was diagnosed with NMOSD in 2019 while completing her Higher School Certificate (HSC). Despite the significant health challenges that came with her diagnosis, Alex has shown extraordinary resilience and is currently studying medicine. 
• Deborah Leticq, has been living with NMOSD for many years and has become a well-known figure within the local NMO community. 
• Ann Single is the CEO of the Patient Voice Initiative, an organisation dedicated to ensuring that the voices of patients are heard in the health technology assessment process.  

On the 14th episode of The Raw Nerve podcast, co-host Phil O'Neil engages in a compelling conversation with the President of MS Australia, Associate Professor Des Graham, alongside MS advocates Kelly Englehardt and Sonia Marcon, exploring their lived experiences with the National Disability Insurance Scheme (NDIS).

With the NDIS Review ongoing and the call for the NDIS to better address the needs of people living with MS, we hear from the voices that matter the most—the very people the scheme was intended to support.

Tune in as Phil, Des, Kelly, and Sonia openly share moments of success within the NDIS, shed light on its failures, and provide crucial insights on how we can create a truly equitable and effective NDIS.

Related Links:

• A better NDIS for people living with MS
• Episode Transcript