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

Host Dr Julia Morahan reminds us that our brains are by far the most complex organs in our body, allowing us to sense, feel, think, move and interact with the world around us. The brain helps us to regulate and influence many of our body’s core functions including those of the cardiovascular, respiratory, endocrine and immune systems. A multitude of factors can affect our brain health even before we were conceived!

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

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

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

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

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

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

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

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

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

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

www.takemyhandthemovie.com

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

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

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

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

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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.

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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!

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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.

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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.

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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.

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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.

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