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:

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:

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:

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:

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:

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:

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:

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:

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: