The Raw Nerve

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

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: Diving into Glass Diversifit

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: PLATYPUS

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: National Carers Week Australian Carers Guide⁠

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. In 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. Paul Koury lives with multiple sclerosis (MS) and after being a carer for his mother and navigating the aged care system, he 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. 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. 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: National Carers Week Australian Carers Guide⁠

In this episode of "The Raw Nerve," CEO of MS Australia, Rohan Greenland and the Head of Research, Dr. Julia Morahan, discuss the upcoming Progress in MS Research conference, highlighting key themes, international and Australian speakers, and showcase groundbreaking research in areas such as health behaviour, myelin repair, and neuroimmunology. This episode emphasises the conference's unique format, which includes opportunities for the MS community to actively participate. The title "Pioneering Progress: Insights into MS Australia's iconic Research Conference" perfectly captures the essence of the discussion. Useful Links: www.msaustralia.org.au/register

Diagnosed 13 years ago with MS, Justine Martin was told by her neurologist that she wouldn’t work again. Undeterred Justine has found purpose in helping other people through telling her story and giving them hope. Along the way Justine has earned recognition and many awards, as an accomplished speaker, life coach, artist, author, publisher, teacher, and entrepreneur. Now she’s combined all of those passions and skills to shed light on the resilience of other Australians, with her latest publishing venture; a new book that brings together the stories of 26 extraordinary authors who've bravely shared their unique experiences and journeys living with multiple sclerosis. Useful link: Whispers Of Resilience: Our MS Stories

In August 2018 Cate Green experienced a painful back spasm while at a spa in Daylesford. By the following month Cate had been diagnosed with MS.  A particularly severe relapse that same month left Cate temporarily paralysed from the neck down. “So I lost both arms, legs bowel and bladder, and that put life in perspective for me.” Today five, years on Cate is about to embark on her biggest challenge, tackling El Camino, a bike ride of over 700 kilometres which will see Cate cross the border between France and Spain, ride over the Pyrenees. and all the way to the Atlantic Ocean on the Northern Coast of Spain. On this 16th episode of the Raw Nerve, we catch up with Cate in London, ahead of her grand adventure. We discuss the fine line between courage and insanity, the challenges of running a small business with MS, her personal motivations, and her message of hope for anyone facing adversity. You can follow Cate Green’s progress on her Facebook page: The black cockatoo

Join host Phil O'Neil in an extraordinary conversation on the 15th episode of Raw Nerve Podcast, where two remarkable Australians, Bronwyn Saunders and Chris Morgan, share their inspiring journeys with multiple sclerosis (MS). Despite facing unexpected MS diagnoses, both Bronwyn and Chris have defied the odds and accomplished incredible feats.  Bronwyn Saunders, a children's author, opens up about her own MS diagnosis two decades ago and how she has not only thrived but also achieved her lifelong goal of becoming an author.   Meanwhile, racing champion Chris Morgan discusses the life-changing moment he received his MS diagnosis in 2016. He delves into the strategies he has employed to effectively manage his condition and emphasises how he has successfully pursued his dreams despite the obstacles.  In this engaging episode, you will discover how Bronwyn and Chris came to terms with their MS diagnoses and witness the incredible ways they are living their lives to the fullest.   Be prepared to be inspired as they share their heartfelt messages of hope and resilience with others on their own MS journeys.  Related links: Episode transcript Bronwyn Saunders, MS Ambassador  Chris Morgan on Instagram: @morgs959  Chris Morgan, Tuff love  

On the 14th episode of The Raw Nerve podcast, co-host Phil O'Neil engages in a compelling conversation with the President of MS Australia, Associate Professor Des Graham, alongside MS advocates Kelly Englehardt and Sonia Marcon, exploring their lived experiences with the National Disability Insurance Scheme (NDIS). With the NDIS Review ongoing and the call for the NDIS to better address the needs of people living with MS, we hear from the voices that matter the most—the very people the scheme was intended to support. Tune in as Phil, Des, Kelly, and Sonia openly share moments of success within the NDIS, shed light on its failures, and provide crucial insights on how we can create a truly equitable and effective NDIS. Related Links: A better NDIS for people living with MS Episode Transcript

On the 13th episode of the Raw Nerve Podcast, co-host Phil O’Neil talks with MSWA Chair and MS Australia Board Director, Horst Bemmerl about his life with multiple sclerosis (MS) and his incredible journey, from diagnosis, and its inevitable challenges, to positivity and living a life devoted to educating, raising awareness and helping others with the disease.  Phil and Horst discuss their respective MS diagnosis journeys and find a mutual connection as Horst shares tales about some of his extraordinary endeavors, including most recently in Malaysia.  Join Phil and his guest Horst as they chat openly about challenges and wins while living with MS, symptoms, managing MS, the impact on family, and the incredible advances in MS research, advocacy and future plans.  Related Link: Episode transcript

On the 12th episode of the Raw Nerve Podcast, guest host Jeremy Henderson, MS Australia’s Head of Advocacy, had the privilege of speaking with three dedicated MS Nurses about the invaluable work they do and the remarkable connection they form with their patients. In the lead up to World MS Day, Jeremy speaks candidly with Belinda Bardsley, Tim O’Maley and Emma Christian about the role of an MS Nurse, the remarkable holistic care provided to people living with MS, together with the ongoing and important bond formed with their patients and their families over a long period of time. With the launch of MS Australia’s campaign, MS Nurses – Life-Changing Care, Belinda, Tim and Emma discussed the enormous challenges in Australia given the current shortage of MS Nurses and the dire need for this campaign. Related links: MS Nurses Episode Transcript

On the 11th episode of the Raw Nerve Podcast, co-host Rohan Greenland talks with three people heavily involved in the development of a new MS Australia video resource developed to help the community gain a better understanding of multiple sclerosis. Rohan is joined by Couch Creative creative director Mike Sarah, and two of Rohan’s MS Australia colleagues who contributed clinical and lived-experience expertise to the project; Dr Therese Burke, an MS Nurse and former president of MS Nurses Australasia, and Andrew Potter who lives with MS. Join Rohan and his guests as he discusses the challenge of explaining a complex disease in simple ways that are easy to understand, and of using a largely visual medium to explain what, are often invisible symptoms. Related Links: What is MS? Video Episode Transcript

On the 10th episode of the Raw Nerve Podcast, friend of the show, Tim Coetzee, Chief Advocacy, Services and Science Officer at the National MS Society takes the reins, coming to us from New York, where the Pathways to Cures Global Summit wrapped last week. The summit brought together 189 leaders from the global MS movement, representing 15 countries and 20 organizations that endorse the Pathways to Cures roadmap, to focus on how we can find solutions to MS. Tim sat down with two members of the MS Australia delegation, President Des Graham and Head of Research Julia Morahan for their reflections on the Summit and to discuss the importance of collaboration in international efforts. Related Link: Episode Transcript

On the 9th episode of the Raw Nerve Podcast Phil O’Neil chats with Felicity Perdue from Hobart about her preparations for the May 50K, and her very personal motivation to raise money for MS Research. The May 50K is now underway and Felicity, who was diagnosed with MS in 2019 is taking part for herself, for her late mother and for all those living with MS. Felicity sits down with Phil to talk about her family’s MS journey, what makes her thankful, and how she’s navigated her MS. Related Links: ⁠The May 50K ⁠ ⁠Engaging the MS Community to Promote Exercise Episode Transcript

On the eighth episode of the Raw Nerve Podcast, co-host Rohan Greenland laces up his runners ahead of the May 50k and discusses the inspirational lengths that Aussies will go to, to raise vital funding for MS Research. He’s joined by Samantha Billington from Darwin. Living with MS, Samantha has led an extraordinary May 50K fundraising effort over the last two years. In 2022, with the support of Darwin radio station Hot 100 she and radio personality Brent Watkinson put their May 50K challenge front and centre on a treadmill in a local shopping centre. This year Samantha is hoping her team can walk or run more than 15,000km. Rohan chats with MS Plus May 50K Program Manager Lauren Hawkins and finds out just how easy it is to sign up and take part in the May 50K He also speaks with Dr Yvonne Learmonth, an MS Australia fellowship recipient, from Murdoch University about exciting research in the area of physical activity, movement, and exercise, and its critical importance to people living with MS. Related Links: The May 50K Engaging the MS Community to Promote Exercise