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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.
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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 processUseful Links
MS Australia: Autologous Haematopoietic Stem Cell Transplant (AHSCT) Website MS Australia AHSCT Position Statement Episode TranscriptCurrently 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 -
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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.
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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. -
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 -
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 AustraliaHost: 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. -
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 -
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 -
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 -
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 AustraliaPanellists
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 TasmaniaKey links:
National Pain Week 2024
About Dr Alice Saul
MS Australia pain webpage
Deanna’s Instagram -
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 AustraliaPanellists
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 MelbourneUseful links:
Brain health report Why is brain health important in MS? Optimizing brain health across the life course: WHO position paper -
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
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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 -
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 -
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 -
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.
Facebook Carmel Charlesworth is Extraordinary Extraordinary: Inspiring stories of living and loving beyond the label
Useful links: -
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
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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 -
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.
- Visa fler
