Let's Talk MND - Making MND a Notifiable Disease

Let’s Talk MND - Debbie DrewIn this episode, Jane speaks with Debbie Drew about the extraordinary friendships, generosity and sense of belonging that have grown around Danihers Drive for Fight MND.Deb reflects on the remarkable legacy of Neale Daniher, whose determination helped bring communities together in support of MND research. With more than $1.1 million raised through the drive, Debbie explains why she keeps returning year after year — not just for the cause, but for the people.From an hilarious drag-themed fundraiser to the serious need for better MND data in regional communities, this conversation is full of heart, humour and humanity.A reminder that kindness costs nothing, community changes lives, and you don't need a personal connection to MND to make a difference.🎧 Listen now to Debbie's story on  It's a warm, funny and uplifting conversation about the power of showing up for others, building friendships and making every act of kindness count.Listen or watch on your favourite podcast platform or at letstalkmnd.com

summaryLet's Talk MD host Jane speaks with fellow MND advocates Anna- Louise Hobden, who helped make MND notifiable in New South Wales, and Jane Andrews of Damien's Journey and Fight with MND in Queensland. They explain why compulsory case reporting could give researchers and health services a clearer picture of MND, describe state-by-state advocacy, and call for Queenslanders to support a petition for change.

In this episode, Peta Hardy, an Occupational Therapist who specialises in MND, and shares insights on how occupational therapy supports individuals with MND.She discusses assistive technology, home safety, and the importance of a multidisciplinary team to improve quality of life.

In this mind blowing episode, Dr. Amanda Wright and Dr. Lyndal Henden discuss their recent research findings that MND has a 7 times higher prevalence in areas of in Western NSW, compared with the rest of the world!We explore incidence rates, genetics and environmental factors, and the challenges of rural healthcare. They share insights into ongoing efforts to improve data collection, diagnosis, and care for rural patients.

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.

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.