Let's Talk MND

Gary Suntup is a deep thinker, he is a psychologist he shares his personal journey of losing hobbies and passions due to health issues, exploring how this impacts identity and self-understanding. He also discusses his practice of radical acceptance.

Jeff Jenkin and Sarah Rigg are a young couple with small sons. Jeff was diagnosed with Bulbar and Upper limb MND in August of 2024. 3 months after he qualified as a Pediatric surgeon. This heartfelt interview with Sarah Rigg and Jeff Jenkins explores living with MND, diagnosis journey, advocacy efforts, and maintaining hope and humour amidst adversity.

Joseph Skewes and Bec Francis are the co-founders of Curalysis, a lived-experience-led digital health platform being built by people living with neurological conditions.. Joseph lives with MND, and Bec lives with refractory epilepsy. Curalysis is built around a simple belief: people living with complex neurological conditions are already generating valuable day-to-day health data, but too much of...

The conversation covers Professor Dominic Rowe's work with MND, the Riverina research findings, the increase in MND mortality and its environmental factors, the controversy around placebo use, the importance of understanding the cause of MND, environmental factors and clustering, the significance of making MND a notifiable disease, and the funding and operations of the MND clinic. The conversation...

The conversation delves into the importance of family storytelling and the impact of active listening. Bill shares his personal journey, motivation, and the art of understanding people. The exploration of life stories, memories, and the legacy for future generations is highlighted, along with the impact of tough love and parenting. The reward of family storytelling and engaging future generations...

The conversation covers Nicole's personal identity, professional journey, involvement in the MND community, participation in charity events, running marathons for MND, fundraising, coping with community involvement, and future marathon plans. It also highlights the impact of MND on regional areas and offers advice for children of MND patients.

The conversation with Aaron Hintala revolves around the themes of hope, identity, the impact of MND diagnosis, faith, community support, and resilience. Aaron's unwavering hope and faith, along with the compassion and support from his community, have been instrumental in his journey with MND. His identity as a husband, father, and surfer has been redefined, and his resilience is evident in his abi...

From breakfast radio to the front line of one of Australia’s most important medical fights. In our latest podcast episode, we sit down with Matt Tilley — former radio star turned CEO of FightMND — to talk about a career pivot driven by purpose. After years behind the microphone entertaining millions, Matt stepped into a very different role: helping lead the fight against Motor Neurone Disease and...

Rob Ferrari is a vibrant 61-year-old living with motor neurone disease. After his diagnosis in early 2024, Rob quickly shifted his focus from work to what matters most — time with his wife Marion, their three children, and close friends. He shares how he’s adapting to the physical challenges of MND, staying active through swimming, and leaning on a strong support network, including family and his...

In this conversation, Rob and Sue Taylor share their experiences with motor neurone disease (MND) and the challenges they have faced together. Rob discusses his journey to diagnosis, the impact of MND on his life, and his involvement in the MND community. Sue opens up about her own health struggles with cancer and the importance of support systems. Together, they emphasize the significance of find...

In this episode, Jean reflects on caring for her husband Greg, who died from MND in 2025. Jean and Jane discuss the physical and cognitive challenges of the disease, the need for clearer communication about cognitive changes, and the vital role of community support for people living with MND and their carers — including how to navigate life and identity after loss.

Hazmir, 42, was diagnosed with Motor Neurone Disease (MND) in February 2025, and only three months later his family rallied to raise $30,000 for Fight MND in his honour. Guided by a deep faith, he approaches his future with joy, hope, and unwavering determination. Since his diagnosis, Hazmir has become an active and passionate member of the MND community through his involvement in both LEN and LER...

Jane Simpson speaks with Richard Rawnsley about his recent MND diagnosis. Richard has decided to fight back and is currently walking the Santiago De Compostela trail, this time in France.   Real stories, research, and lived experience from the MND community. A podcast for connection, awareness, and hope.   You can follow Richard's journey here https://linktr.ee/richardwalks2025    

Dr. Karen Hutchinson, is an  Honorary Research Fellow at Macquarie University and Anthea Smith whose partner, Jason, lives MND are two authors of a recently published research paper, " 'Finally, in Hands I Can Trust' : Perspectives on Trust in Motor Neurone Disease Care." It explores how individuals with Motor Neurone Disease (MND) build trust with healthcare providers and the importance of that t...

Janet Hough was diagnosed with MND in June 2023.   Janet and her husband Peter are a true team and focus on what brings them joy on their MND journey.    They have started a monthly MND Mornington Peninsula group They are organising a MND Victoria - Event - Walk for a Cause - Mornington Peninsula - on October 5th at Mornington Park. You can find out more about the walk here   https://share.google/...

Peter Chambers was diagnosed with MND in 2019. Whilst Peter does not deny the challenges MND have given him, he is living his life with intention, joy and a seriously wicked sense of humour which he delivers to us via videos He has an alter ego, "Cranky Pete", who points out the ridiculous and things he just doesnt like. He has also recently written, directed and starred in a short film which has...

In 2023, Neil Dyson and his wife, Maree Stanley, had just retired after running a successful business. Neil was then diagnosed with MND Nei and Maree take us through the story to date and how they are living as best they can with MND.  

The Firies Climb for MND was created in 2015 by firefighter Matt Pridham after his best friend, Adam Regal, was diagnosed with MND. After learning that there was no known treatment or cure, they became determined to join the fight to find one. Together, they pledged to raise as much money and awareness for MND as possible. All funds raised go to Prof. Dominic Rowe's Macquarie University Centre for...

On June 22, 2023, Ron "Hobbo" Hobden's life changed in a single sentence: You have motor neurone disease. No cure. No treatment. Just a brutal countdown he never saw coming. A week earlier, the 40-year-old rugby player, devoted husband, and proud dad to Lizzie, 5, and Henry, 3, had been training for a marathon. Fit, strong, and full of plans, he had no reason to imagine his future would be cut sho...

Damian Andrews was 42 years old when he was diagnosed with MND. Damian says he is going to "ride until he dies" He and his wife Jane & their 3 boys live in Hervey Bay in QLD. They are a dynamic family. Living every day the best they possibly can with MND. They are also absolute champions, raising awareness of MND through their Facebook page which you can join here and throughout the media. htt...

Dr. Christen Chisholm is a post-doctoral research fellow at the University of Wollongong in Australia where she trained in the lab of the late Professor Justin Yerbury. She recently completed her PhD which focused on the development of an antibody based BioPROTAC therapeutic  to specifically reduce levels of misfolded SOD1, a toxic protein species associated with amyotrophic lateral sclerosis (ALS...

Victoria University are conducting a trial called "The neuroprotective potential of exercise in individuals with Motor Neuron Disease – the ProtEx-MND project". It is in collaboration with Calvary Health Care Bethlehem and received funding from the National Health and Medical Research Council (NHMRC).    They would like to understand if exercise can help maintain functional capacity and muscle and...

Professor Bradley Turner is Head of the Motor Neuron Disease Group and Research Lead of the Brain Health and Repair Mission at The Florey Institute. His group has a broad research interest in neurodegenerative diseases affecting the voluntary motor system in the brain and spinal cord. His team focuses on MND. This is a very brief summary but if I spoke of all the research and publications we would...

In 2022, Peter's life took an unexpected turn when he was diagnosed with MND. While initially confronting, this diagnosis became a catalyst for transformation. Rising above feelings of helplessness, Peter stands as a testament to the strength of the human spirit, embracing a renewed sense of purpose: to turn his personal journey into a platform for advocacy and hope. As an Ambassador for MND Austr...

Dr Rowan Hearn is the Clinical Director Palliative Medicine at Calvary Health care. Rowan supports   the improvement of quality and safety in palliative care, having served as a member of the Governance Committee for the Palliative Care Clinical Network for the Department of Health, and Co-Chair of the Network's Expert Working Group for Care of the Dying Person. Dr Hearn is active in research into...