Let's Talk MND

What happens when you live with MND far longer than expected?In this special episode, Phil Camden, John Hanley, Matt Stickland and Peter Chambers come together to share their experiences of living with MND over many years. They talk openly about what keeps them going, what they’ve learned along the way and the different ways they’ve adapted to the challenges MND has brought into their lives.We explore the importance of mindset, staying connected, finding support and making the most of each day. There’s honesty, humour and plenty of insight as they reflect on the choices, routines and sources of strength that have helped them continue moving forward.It’s an uplifting and thought-provoking conversation about hope, resilience and longevity — and about living, not just surviving, with MND.

Adam Dowling is living with SOD1 MND, a rare genetic form of motor neurone disease.In this episode, Adam shares what it means to discover your MND has a genetic cause — not just for you, but for your family and future generations.He talks about genetic testing and counselling, navigating conversations with his four children, and his treatment with Tofersen.Community has also become an important part of Adam’s journey. Connecting with others affected by MND has given him support, understanding and a desire to use his own experience to help others.“Connecting with others in the MND community has been invaluable. I want to share my journey and help raise awareness about the disease.”Adam’s story is about genetics, family, treatment, community and hope — and choosing to keep living life fully.

In this episode, I’m joined by Sarah Shuttlewood, who shares her family’s journey following her father Peter’s diagnosis with MND.Sarah speaks openly about navigating MND from a daughter’s perspective — the shock of diagnosis, supporting her children through their grandfather’s illness, and the challenges of living hours away from her parents.It’s an honest conversation about changing family roles, respecting independence, and finding the balance between wanting to help and allowing someone living with MND to remain in control of their own life.

Professor Tom OxleyIn this episode, I’m joined by Professor Tom Oxley, CEO and co-founder of Synchron, a company pioneering brain-computer interface technology.We discuss how Synchron’s Brain Computer Implant is helping people living with Motor Neurone Disease regain independence by enabling them to control digital devices using only their thoughts.Tom explains the latest clinical developments, what the future holds for brain-computer interfaces, and why this technology has the potential to transform the lives of people living with paralysis.#BrainComputerInterface #Stentrode #ThoughtToText #CommunicationTechnology #AssistiveTechnology #MND #MotorNeuroneDisease #ALS #Neuroscience #DigitalInclusion #Independence #Synchron #TomOxley #LetsTalkMND #Podcast

In this episode, I’m joined by Marlene Lewis and her daughter Nicole to share the story of their husband and father, Shane Lewis, who lived with MND.Together, they speak candidly about the realities of living with MND in regional Australia, where accessing specialist care can be incredibly challenging. They also discuss the additional barriers faced by people diagnosed over the age of 65 who are ineligible for the NDIS.Shane made the courageous decision to access Voluntary Assisted Dying, and Marlene and Nicole generously share their experience of the application process, including the difficulties created by living in a regional area where even video medical appointments weren’t readily available.Above all, this is a conversation about Shane himself—a much-loved husband, father, mate and all-round great bloke.This is an honest and important discussion about love, loss, inequity, and ensuring every Australian living with MND has access to the care and choices they deserve.

Tom OxleyIn this episode, I’m joined by Professor Tom Oxley, CEO and co-founder of Synchron, a company pioneering brain-computer interface technology.We discuss how Synchron’s Brain Computer Implant is helping people living with Motor Neurone Disease regain independence by enabling them to control digital devices using only their thoughts.Tom explains the latest clinical developments, what the future holds for brain-computer interfaces, and why this technology has the potential to transform the lives of people living with paralysis.

In this episode, Todd Johnson shares his personal journey with MND, the challenges of diagnosis, and his passionate advocacy for improved care and innovation in the sector.Todd is also the Chair on MND VictoriaDiscover insights on care gaps, technological opportunities, and how community and collaboration can make a difference.

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 it is fragmented, unstructured, or lost. The platform helps people track symptoms, function, interventions, and changes over time, with the aim of identifying patterns, improving personal insights, and building richer data to support better care, treatment, and research.Joseph and Bec are currently fundraising to support the next stage of development, including ethics, compliance, and clinical trial preparation. They are also seeking a research collaborator institution to explore how Compass can support people with MND by improving the sequencing and personalisation of information and care navigation. For more context, you can read about the Compass prototype here:https://curalysis.com/blog/theres-no-map-for-thisYou can also support or share the Curalysis GoFundMe campaign here:https://www.gofundme.com/f/two-founders-two-diagnoses-one-platform-help-us-prove-it

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 delves into the challenges of healthcare delivery and funding, emphasizing the importance of clinical trials funding and the need for empathy over sympathy in patient care.

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 in storytelling is emphasized, along with insight dinners and personal stories.

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 ability to find alternative ways to continue enjoying the ocean despite physical limitations.https://www.instagram.com/als_and_us?igsh=MWxjdGV5d2Z3dmR0cQ==

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 supporting the mission started by AFL legend Neale Daniher.

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 mates at Pennant Hills Golf Club.This is a story of resilience, community, and finding joy in every day.

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 finding joy amidst adversity, the value of humor, and the need for caregivers to seek help.Their story is one of resilience, love, and a commitment to raising awareness for MND.

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 LERAP. He has also written a book and is the focus of a documentary that captures his life, resilience, and impact since receiving his diagnosis. He also has a You Tube channel "MND Hacked" a channel dedicated to outsmarting Motor Neurone Disease with cutting-edge technology. From eye-tracking gaming setups, robotic legs and voice-banking AI to smart home automation that defies physical limits—he explores the digital tools that keep us connected, creative, and in control. The body might glitch, but the mind is limitless. Let's hack the diagnosis". https://youtube.com/@hazhacked?si=cIwBYxhTyEnIIBUW

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 trust for their quality of life. It also represents a sentiment of finding reliable support, which can be crucial for people with MND and their families.    You can read the article here https://rb.gy/amovj9

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/o0XrbBYHZ6Lv7PU9N Janet is involved in LERAP and the LEN and is a co-investigator on various care studies.   She has attended the international MND conference, given presentations at different seminars.  Janet is an advocate for how important it is for researchers to work closely with PLEx.   Janet and Peter are not ignoring the fact that MND is a life-limiting disease. They know life has its challenges in unexpected ways for everyone, and they have to face these and continue to live their best lives.  

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 been submitted to the Focus on Ability Short Film Festival! which he has been shortlisted for an award.   Through moments of vulnerability, humour, and creativity, the film captures Peter's unwavering positivity and the strength of human connection.   "I Choose Happiness is a celebration of resilience, showing that while MND may change how life is lived, it can never silence the will to create, to love, and to hope.   Show your support by watching and voting for his deeply personal and joyful film: https://www.focusonability.com.au/FOA/films/3718.html Peter's website, where you can find out all "things Peter" is  peterchambersmnd.com      

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 Motor Neurone Disease Research. It is the largest MND research centre in Australia, receives no federal or state funding to operate and is completely run through the support of public donations and research grants. All researchers work together in one facility, on one topic, with one vision: a world without MND. You can join or donate here https://firiesclimbformnd.org.au/cms/home

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 short. "I remember Annie sitting beside me, trying to hold back her tears," Ron recalls. "All I could think about was our kids. How do you tell them their dad is dying?" Instead of surrendering to despair, Ron made a decision that day: MND would shape his life, but it would not define it. It might take his body, but it would never take his fight, his love, or his determination to inspire others.  

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. https://www.facebook.com/profile.php?id=61556505521638&sk=mentions They are also selling "merch" with all profits going to Fight MND https://damiansjourney.deco-apparel.com    

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). Her work also focuses on understanding the mechanisms of cellular protein degradation and strategies to harness these pathways as potential therapeutic avenues in the treatment of ALS.   Christen is also a long time friend of the Yerbury's .`

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 brain health in people diagnosed with MND. Despite the known benefits of exercise in improving physical function and quality of life in different clinical populations, exercise is currently not an integral part of the multidisciplinary care of people with MND. This is mainly due to the absence of MND-specific exercise guidelines and the limited evidence surrounding the beneficial effects of exercise in this population.    The aim of this project is to fill this knowledge gap and to understand if exercise can slow neurodegeneration in individuals living with MND, investigating the neuroprotective potential of 16 weeks of carefully prescribed exercise on their brain, spinal cord, and skeletal muscle. The findings of this study will help to determine the role of exercise in the care of people living with MND.   Here is a link to the project description: https://www.vu.edu.au/institute-for-health-sport-ihes/projects/the-protex-mnd-project

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 be here all day. Brad has a huge brain and a huge heart.

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 Australia, Peter is passionately committed to raising awareness by amplifying the voices of those affected; as well as fostering greater understanding, compassion and meaningful change around this devastating disease.  Peter is an accomplished professional with extensive experience within the private, public, and non-profit sectors; encompassing leadership, behavioural change, stakeholder engagement and governance. Peter also served with distinction in the Royal Australian Air Force for over 35 years, an experience that shaped his resilience, discipline, and deep sense of purpose.

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 Neuro Palliative Care and telehealth with further research interest in carer support. Prior to working at CHCB Dr Hearn spent 15 years working in the National Health Service (NHS) in London, during which time he completed a Masters in Medical Ethics and Law and was lead for clinical governance for his service. 

Michael Schnieder is the Managing Director of Bunnings Group, Mike is also the Chair of Fight MND. Andrew Danson is a Director of The Leasing Collective. He is a board member of the South Melbourne Market.  Andrew is also President of Motor Neuron Disease Australia He has lived experience with the disease, with his father having passed away at the start of 2020. Fight MND and MNDA have recognised the need, and the desire of the MND community to work more closely together, MIke and Andrew talk about what has been done and the plans for the future    

Tim Baker is the best-selling author of The Rip Curl Story, Occy, High Surf, Bustin' Down The Door,  Surf For Your Life, Century of Surf and Surfari.  He is a former editor of Tracks, Surfing Life and Slow Living magazines, and a three-time winner of the Surfing Australia Hall of Fame Culture Award. On July 7, 2015, Tim was diagnosed, out of the blue, with stage 4, metastatic prostate cancer I read an article in The Australian Newspaper that resonated with me, so strongly. Tim discusses the importance of intimacy when sex is no longer an option. https://www.bytimbaker.com/

 Andrew Denton is an Australian Gold Logie nominated television presenter and former radio host amongst the many, many, things that Andrew has done. He was the host of the ABC's brilliant interview program and my favorite show ever, Enough Rope. Andrew founded Go Gentle Australia in 2016. Go Gentle is a charity which promotes end of life choices. including the option of voluntary assisted dying. Go Gentle is instrumental in passing voluntary assisted dying laws in all six states.   Jane Morris is the president of Dying with Dignity Victoria. She started her career as a nurse and then as a mature age student, completed a master's of bioethics and studied the topic of VAD with avid interest. Jane is a member of our community. Her mother died of MND 10 years ago. Jane's mother's death was a catalyst that spurred her into action to take on the role of a staunch, vocal and active advocate for Victorian VAD legislation.  I understand that today may be very difficult to listen to, but I think it's really important that we are as educated as possible and are aware of the choices that we have for our own life.

Emma Vulin is a Member of the Victorian Parliament. She is the Member for Pakenham. Emma was diagnosed with MND in April of 2024. Emma is so open and honest about her diagnosis with MND and the changes that are happening to her and her family. Emma is smart, funny, loving and loyal. Enjoy her Podcast. https://www.parliament.vic.gov.au/members/emma-vulin/    

Welcome to the 2025 "Let's Talk MND" Podcast. Mark Puls was diagnosed with MND in 2022. Like many people living with MND, he is doing for others. He is raising funds for Prof Domonic Rowe at Macquarie University. Last year, they raised $13k. They are planning another event this October. This year, members of his family and some friends will climb Mt Fuji in Japan to raise awareness of MND. In this podcast we talk to Mark and his wife Jill, some of the family and Mark's best mate David.  

Barry Werth is a pharmacist. His wife Trean died of MND. Barry has so much experience and is bringing his wealth of knowledge to many MND research projects. He has also written a fabulous article on MND for Pharmacists so they can better care for their clients.   https://www.australianpharmacist.com.au/role-of-the-pharmacist-in-motor-neurone-disease/#:~:text=MND%20is%20a%20fatal%20disorder%20of%20motor,and%20improve%20a%20patient's%20quality%20of%20life.    

Prof. Paul Tallman is a Neurologist who specialises in MND. Paul also is one of the leaders of the MiNDAUS Registry, he explains it to us, how it can help and how we can help. https://www.mindaus.org

Let's celebrate the first year of our Podcast

Troy Sachs is one of the world's most recognised and awarded Paralympians. He led the Australian Wheelchair Basketball team, the Rollers, to win two gold and one silver medal in five Paralympic Games from 1992 to 2008. In 1997 he was awarded an Order of Australia Medal and Australian Sports Medal in 2000. He is also inducted into the Sport Australia and Basketball Australia Halls of Fame. Since retiring from sport, Troy has focused on giving back to his sporting community, nurturing talent, mentoring emerging athletes and being an advocate for inclusion. He lives and breathes his mantra that a person should be able to do all they set their minds to without limitations.

Matt Stickland has been LIVING with MND for 9.5 years. He is a husband and dad, he has had to stop working, but is lucky to live on a rural property. Matt has a beautiful attitude to life, is an amazing support to others with MND and is a demon at fundraising too. I loved chatting to Matt.      

Finn Cadman is 10 years old. He is an MND champion, he is MND Vic's youngest ambassador. Finn is unhappy about the discrepancy between NDIS and Aged Care. Finn is "schmoozing" Politicians to make a change for his Glampa and others.    

Julie Labra is a Project Manager with MNDA. Julie has worked with people with MND for the past 19 years. Julie was the project manager on the new Lived Experience Network (LEN) which brings together people with Lived Experience and people who wish to research different aspect of MND. Working on projects with people who have Lived Experience is teaching her more about what it's like to live with MND and thier priorities.

I was delighted to be included in the Firies for MND climb in the blue mountains and invited to be on the Dirt Church Radio podcast with Matt Pridham, Prof Dom Rowe and Gavin Clifton. Dirt Church radio have kindly allowed me to share their podcast with you all. Prof. Dominic Rowe shares very interesting information about the possible link between the environment with MND.

Dr Rachel Yerbury (Phd) is a registered psychologist as well as a lecturer and researcher in the School of Psychology and Public Health, La Trobe University Australia. Her research area focusses on the connection between humans with Nature / animate worlds and how this impacts mutual well-being. In particular. Rachel is also an author, a mother and the widow of Dr Justin Yerbury. Sunday 28th of July was the 1st anniversary of Justin leaving us.

Kathie Barker Many of us don't know that once we've been diagnosed with a terminal illness we have access to our Superannuation. Kathie is the CEO of "Release My Super" and she tells us how you can access your Superannuation  You also may be eligible to make a TPD super claim for compensation if you've suffered an injury or illness that permanently prevents you from working in your normal job or any other work for which you are suited by education, training or experience. Your super fund may include income protection insurance allowing you to claim financial support when an injury or illness is holding you back from earning income from your regular job. All superannuation funds have death benefit payments, which are usually made up of contributions as well as any insurance benefits attached to the policy. You can contact Kathie via the website and they will do all they can to assist you. https://www.releasemysuper.com.au

Our guest this week is Michael Thurn the CEO and Managing Director of PharmAust, a clinical-stage biotechnology company. He tells us about Monepantel which is a well-known veterinary drug. It has been shown to have an effect on the abnormal accumulation of protein in cells. This accumulation is associated with motor neurone disease. Monepantel works by increasing the recycling and removal of excessive or abnormal proteins.  Results from phase 1 of this trial suggest that monepantel was well tolerated. In fact it showed a slowing in progression of MND.  In July of 2024 Monepantel has been included in the Healy ALS trials, in Boston, USA, which means the study will be fast tracked. To learn more about the studies please go to  https://www.pharmaust.com  

Jason and Anthea Smith are MND Warriors. Jason was diagonsed in 2017 at the age of 39. Together they are battling this disease and raising awareness at the highest levels. They ROCK.

The episode of Let's Talk MND is about the best practice of research collaboration between Dr Marnie Graco and people with MND which is crucial for advancing understanding and care. This approach not only improves the relevance of research programs but also fosters a sense of empowerment and involvement among those directly affected by MND. It's a powerful way to inspire others and drive meaningful progress in the field. Featuring Natalie Parke and Phil Camden