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.

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.

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-this

You 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.