The Raw Nerve – Détails, épisodes et analyse

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 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.  

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.

Useful links:

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

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

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.

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

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