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The Raw Nerve
The Raw Nerve
Podcast

The Raw Nerve 2n6o3z

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Welcome to The Raw Nerve – the official Podcast of MS Australia – a conversation space for all things multiple sclerosis. us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community; those living with MS and their families and carers, together with leading clinicians, researchers, and advocates. www.MSAustralia.org.au/podcast 2o5kt

Welcome to The Raw Nerve – the official Podcast of MS Australia – a conversation space for all things multiple sclerosis.

us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community; those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.

www.MSAustralia.org.au/podcast

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Ep56 Living well with MS: the new resource empowering Australians to make informed lifestyle choices
Ep56 Living well with MS: the new resource empowering Australians to make informed lifestyle choices
Episodio en The Raw Nerve
In this special World MS Day episode of The Raw Nerve,  MS Australia's Head of Research Dr Julia Morahan, MS Australia research coordinator Dr Jo Gamble, and Lived Experience Expert member and artist Deanna Renee Raw Nerve host Jeremy Henderson to discuss the new MS Australia publication Living well with MS: Your guide to adapting your lifestyle. Together, they explore the importance of evidence-based lifestyle changes, the challenges faced by the MS community in finding credible information, and the empowering impact of MS Australia's latest resource. Deanna shares her personal journey with MS, and how the new resource has helped her “separate the hype from the help”. “Having control over these lifestyle factors is really empowering for me, and I'm sure, for so many of us in the MS community.” Tune in to hear about the collaborative efforts behind the new guide, and actionable advice for those living with MS. Whether you're newly diagnosed or have been living with MS for a number of years, this episode offers valuable insights and . Guests Dr Julia Morahan, Head of Research at MS Australia Dr Jo Gamble, Research Coordinator at MS Australia and one of the authors of the new Wellness Guide Deanna Renee, MS Australia LEEP Member, contributor to the new Wellness Guide and artist.  Useful links: Living well with MS: Your guide to adapting your lifestyle Living well with MS website
Negocios y sectores 5 días
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28:28
Ep55 The value of MS Nurses and MS Nurse Practitioners
Ep55 The value of MS Nurses and MS Nurse Practitioners
Episodio en The Raw Nerve
On International Nurses Day 2025, MS Australia’s focus is the important role of MS nursing as outlined in our new Report: Our Nurses. Our Future. Caring for MS Nurses. What are MS Nurses and MS Nurse Practitioners and how do they work together with neurologists? How can we better and improve community access to MS Nurses? What are the recent improvements to prescribing for MS Nurse Practitioners? In this episode, Raw Nerve guest host Dr Fiona McKay, Senior Research Coordinator at MS Australia speaks with experts Belinda Bardsley and Tim O’Maley about MS Nurses who provide key , education, advice, and care for people with MS and their family and carers. Access to MS nurse care brings a range of health benefits and is a highly cost-effective model of care. However, despite this, there is no consistent allocation of MS nurses across Australia including no agreed nurse/patient ratio, challenging employment conditions, no formalised education pathway and a declining number of MS nurses. The explore options to reverse this trend and the recent changes made by the Pharmaceutical Benefits Advisory Committee that will allow MS nurse practitioners to prescribe certain MS treatments under the PBS in consultation with a physician. This change is set to dramatically improve access to care for people living with MS, especially in regional and remote areas. Belinda Bardsley MS Nurse, Manager Neuro-Immunology Clinical Research, Education and Service (N-CRESS) at Austin Health in Melbourne, Chair of the MS Australia MS Nurses Working Group and co-author of the MS Nurse Care in Australia report. Tim O’Maley MS Nurse Practitioner, Princess Alexandra Hospital in Brisbane, Queensland Health and member of the MS Australia MS Nurses Working Group Hear from those caring for the MS community in a candid and insightful episode spotlighting MS nursing. Useful links: International Council of Nurses | International Nurses Day 2025 Report MS Nurses Australasia
Negocios y sectores 3 semanas
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42:53
Ep54 Empathy in Practice: An Occupational Therapist's own MS journey
Ep54 Empathy in Practice: An Occupational Therapist's own MS journey
Episodio en The Raw Nerve
In this episode of The Raw Nerve, host Jeremy Henderson sits down with Evie Boven, an Occupational Therapist at Grafton Base Hospital in New South Wales, who was diagnosed with Multiple Sclerosis (MS) in May 2024. Evie shares her compelling journey from experiencing initial symptoms to finally receiving a diagnosis, highlighting the challenges and misdiagnoses she faced along the way. Evie discusses the profound impact her health background had on her ability to advocate for herself, the crucial she received from her husband, friends, and colleagues, and the daily management of her symptoms. She also reflects on how her diagnosis has deepened her empathy and understanding in her professional role, enhancing her ability to her patients. Listeners will gain valuable insights into the importance of self-advocacy, the power of a strong network, and the necessity of living life to the fullest despite a chronic illness. Evie also shares her future plans, including travel, and offers advice for those newly diagnosed with MS.
Negocios y sectores 1 mes
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26:15
Ep53: Why health must be a top priority in the 2025 election
Ep53: Why health must be a top priority in the 2025 election
Episodio en The Raw Nerve
Do Australians care enough about healthcare at election time? What are the biggest public health challenges we face? What would it take to put the election spotlight on neurological health? And why is the Australian government continuing to underspend on health and medical research? In this episode of The Raw Nerve, host Jeremy Henderson is ed by Dr Lesley Russell, Terry Slevin, and Rohan Greenland for a candid conversation about the urgent need to prioritise public health and disease prevention in national policy. The explores the lack of long-term healthcare commitments from major parties, the chronic underfunding of medical research, and what a minority government could mean for the future of health policy in Australia. Terry Slevin Terry Slevin has been the Chief Executive Officer of the Public Health Association of Australia (PHAA) since May 2018. He is an Adjunct Professor at both the National Drug Research Institute at Curtin University and the College of Health and Medicine at the Australian National University. He is a Fellow of PHAA and was the Association’s first Vice President (Development). Dr Lesley Russell Dr Lesley Russell is an Adjunct Associate Professor at the Leeder Centre for Health Policy, Economics and Data at the University of Sydney. She is a contributing editor at Croakey and has written the regular Health Wrap column since early 2018. Rohan Greenland Rohan Greenland is the CEO of MS Australia, Chair of the Neurological Alliance Australia, and an occasional host of The Raw Nerve podcast. Links: Prioritising neurological disease research: do our leaders have the nerve? – Medical Journal Insight+, 3 March 2025 MS Australia 2025 Federal Election Statement – 28 March 2025 The Medical Research Future Fund: Why is so much of the money unused? – Croakey / The Conversation, 3 April 2025 Public Health Association of Australia Croakey Health Media
Negocios y sectores 1 mes
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37:24
Ep52 The May 50K: Health, hope and the future of MS Research
Ep52 The May 50K: Health, hope and the future of MS Research
Episodio en The Raw Nerve
The May 50K is fast approaching, ready to inspire people once again to move with purpose and  MS research. Since launching in 2019, this fun and flexible fitness challenge has raised more than 23.4 million dollars to world-class research into the prevention, treatment and cure of multiple sclerosis. Each May, thousands of people in Australia and around the world walk, run or roll 50 kilometres, or set their own goal, to help leave MS where it belongs, behind us. In this episode, Raw Nerve host Jeremy Henderson speaks with a ionate group of guests who share their personal connection to the cause, how The May 50K works, and the incredible impact of the funds raised. Sophie and Anne-Maree share their experiences of living with MS and how The May 50K s their health and wellbeing. The group also explores some of the exciting research projects funded through the challenge, including new grants, the PLATYPUS clinical trial and the EBV in MS platform. Guests: Rohan Greenland, CEO of MS Australia Dr Tennille Luker, Deputy Head of Research at MS Australia Sophie Drummond, Campaign Manager for The May 50K Anne-Maree O’Neil, an executive assistant in the transport industry, who lives with MS and was a top fundraiser in 2024 Whether you are already signed up or simply curious about how movement can drive real change, this episode is a great source of inspiration to get involved.
Negocios y sectores 1 mes
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28:10
Ep51 Riding for MS: wheels and tales with Cate, Clare and Kobe
Ep51 Riding for MS: wheels and tales with Cate, Clare and Kobe
Episodio en The Raw Nerve
Victorians Cate Green and Clare Reilly both live with MS and are setting out on epic – but very different – journeys on wheels to raise awareness and funds for MS. Cate is preparing to ride 20,000 kilometres around Australia on a traditional road bike, accompanied by her dog Kobe, to shine a spotlight on MS and on business owners with disability. Her journey begins Saturday 5 April 2025. Cate previously featured on the Raw Nerve podcast in September 2023, ahead of her Camino Trail trek in Spain. Meanwhile, Clare is aiming to raise $100,000 for MS research in 2026 by becoming the first person – and wheelchair – to complete the Munda Biddi Trail, the world’s longest off-road cycling route (1,070 kilometres) in Western Australia. She’ll take on the trail over a month using her off-road, battery-powered adaptive bike known as ‘The Rig’. In this in-depth and moving episode, Cate and Clare discuss their motivations, training, logistics, and the realities of living with and managing MS on the road. They explore the challenges and s involved – and how they stay focused through it all. Although they didn’t know each other before recording, we were thrilled to learn that Clare is now helping Cate with the side of her journey. With both set to ride through WA, we’re excited to release this episode ahead of MSWA’s Ocean Ride in Perth on Sunday 6 April 2025. We’ll be cheering for Cate as she sets off on Saturday 5 April – and for Clare when she tackles the Munda Biddi Trail next year. To follow their journeys on Instagram go to kobecate and help_me_mind_my_own_business_ | Clare.Reilly and wheelchairmeeetswilderness
Negocios y sectores 2 meses
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49:34
Ep50 The MS Puzzle: Innovative research promises to reveal new clues
Ep50 The MS Puzzle: Innovative research promises to reveal new clues
Episodio en The Raw Nerve
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.  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 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 ing 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 of our Member Organisations – MSWA, MS Plus, MS Queensland and MS SA & NT – and the incredible from donors, fundraisers and the entire MS community.  MS Australia wishes to thank and acknowledge MSWA for its additional . MS Australia’s largest ever funding round in of the number of projects has been made possible thanks to the investment and 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
Negocios y sectores 2 meses
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52:22
Ep49 A cut above: MS, horses and the Yellowstone effect
Ep49 A cut above: MS, horses and the Yellowstone effect
Episodio en The Raw Nerve
On the latest episode of the Raw Nerve we're ed 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 ion 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 ion for horses. “Cutting gave me a goal and a purpose, something to focus on every day, even when things got tough.”
Negocios y sectores 3 meses
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42:28
Ep48 Unseen Strength: Chronic Illness, Resilience, and the Power of Storytelling
Ep48 Unseen Strength: Chronic Illness, Resilience, and the Power of Storytelling
Episodio en The Raw Nerve
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. 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
Negocios y sectores 3 meses
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35:31
Ep 47 See, believe, dream, achieve
Ep 47 See, believe, dream, achieve
Episodio en The Raw Nerve
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 ion 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.
Negocios y sectores 4 meses
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37:12
Ep46 Shaping the future of MS: Research and trials in prevention and care
Ep46 Shaping the future of MS: Research and trials in prevention and care
Episodio en The Raw Nerve
In this episode of The Raw Nerve, we dive into a compelling 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 , 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. us for an engaging exploration of the progress, challenges, and future directions in MS prevention and care.
Negocios y sectores 5 meses
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30:35
Ep45 From the Bush to the Boardroom: Reflecting on a decade of leadership and service to the MS community
Ep45 From the Bush to the Boardroom: Reflecting on a decade of leadership and service to the MS community
Episodio en The Raw Nerve
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. 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
Negocios y sectores 6 meses
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38:18
Ep44 Crisis Toolkit unpacked: Empowering preparedness
Ep44 Crisis Toolkit unpacked: Empowering preparedness
Episodio en The Raw Nerve
In this episode of The Raw Nerve, the 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. ing 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 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 shares their experiences with crisis planning, highlighting the benefits of the Crisis Toolkit, and offering valuable on its impact.
Negocios y sectores 6 meses
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26:58
Ep43 A conversation about MS and AHSCT: Autologous Haematopoietic Stem Cell Transplant
Ep43 A conversation about MS and AHSCT: Autologous Haematopoietic Stem Cell Transplant
Episodio en The Raw Nerve
On this episode of The Raw Nerve, host Dr Julia Morahan, Head of Research at MS Australia is ed 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, 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
Negocios y sectores 7 meses
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35:51
Ep42 No limits: a Ballarat boy shares his running high
Ep42 No limits: a Ballarat boy shares his running high
Episodio en The Raw Nerve
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 ionate 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. ionate 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 ion 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.
Negocios y sectores 7 meses
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23:40
Ep41 Run for your life: Meet the man with MS who has run marathons on all 7 continents
Ep41 Run for your life: Meet the man with MS who has run marathons on all 7 continents
Episodio en The Raw Nerve
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.
Negocios y sectores 8 meses
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29:33
Ep40 ECTRIMS 2024: Shaping the future of MS research
Ep40 ECTRIMS 2024: Shaping the future of MS research
Episodio en 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 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.  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 
Negocios y sectores 8 meses
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27:40
Ep39 Navigating NMOSD: Harnessing lived experience to advocate for new treatments
Ep39 Navigating NMOSD: Harnessing lived experience to advocate for new treatments
Episodio en The Raw Nerve
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). ing 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 . 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.  
Negocios y sectores 8 meses
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42:35
Ep38 A conversation about MS, lived experience, health and MS research
Ep38 A conversation about MS, lived experience, health and MS research
Episodio en The Raw Nerve
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. ing 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. ionate 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, 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 and services webpage Why are three out of four people who develop MS women? By Dr Julia Morahan
Negocios y sectores 9 meses
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51:40
Ep37 Ameera in Paris: The 2024 Paralympic Games
Ep37 Ameera in Paris: The 2024 Paralympic Games
Episodio en The Raw Nerve
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 istration 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
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