Myrddin Gwynedd 
We want to share an important update with our community: the Lighthouse II clinical trial has been stopped early, following a planned interim analysis. The analysis found that the treatment being investigated, Triumeq, did not show the level of benefit hoped for in slowing the progression of motor neurone disease (MND). Lighthouse II was a … Read more
We’re deeply saddened by the recent death of David Seymour, a much-loved member of our Motor Neurone Disease NZ community. David was diagnosed with motor neurone disease in 2017. He had built a successful career in real estate, was a high achiever with a sharp wit, and wasn’t one to back away from a challenge. … Read more
The MND Insight Survey 2025 is the most comprehensive survey of the motor neurone disease (MND) community ever undertaken in New Zealand. Led by Dr Natalie Gauld, who was diagnosed with MND in 2022, this important research is supported by Motor Neurone Disease NZ and funded by the Health Research Council of New Zealand. To … Read more
From diagnosis to determination When Phillipa MacDonald was diagnosed with motor neurone disease (MND) on her 55th birthday, her world changed overnight. Once a practice nurse and competitive bodybuilder, she suddenly faced the challenges of progressive bulbar palsy (PBP), a form of MND that affects speech and mobility. Determined to raise awareness and support for … Read more
A year as Motor Neurone Disease NZ’s Chief Executive Over the past year, Motor Neurone Disease NZ has continued its mission to support, advocate for, and push for progress in research and care. As we mark our 40th year, we reflect on the challenges, achievements, and resilience of our community. Chief Executive Mark Leggett shares … Read more
Talking about death can be difficult, but planning for the end of life can bring comfort, clarity, and dignity. End-of-life doulas provide emotional, practical, and spiritual support to people with life-limiting illnesses and their families. They help with advance care planning, navigating the healthcare system, and ensuring a person’s wishes are understood and respected. In … Read more
Improving care, support, and advocacy for people with MND Motor neurone disease (MND) is life-changing, affecting not only those diagnosed but also their whānau and support networks. The challenges can be overwhelming – from accessing healthcare and equipment to managing financial and emotional strain. Yet, despite its profound impact, there is still so much we … Read more
Building a clearer picture of motor neurone disease (MND) to improve care and drive change Research is essential for improving the lives of people with motor neurone disease (MND) and their families. It helps us understand what works, what doesn’t, and where change is needed to provide better care, services, and support. That’s why Motor … Read more
Dr. Natalie Gauld, who was diagnosed with MND in 2022, is leading the MND Insight Survey, the most in-depth study of its kind in New Zealand. The survey aims to uncover what’s working, what’s not, and where urgent improvements are needed for people with MND and their families. By sharing their experiences, participants will help … Read more
Months of hard work, dedication, and planning went into making the 2025 Walk to Defeat MND a reality. But no amount of preparation could create the energy, passion, and impact that people bring to this event. The walk is nothing without the individuals, families, and teams who show up—not just to take steps, but to … Read more
For Jeremy Benton, the Walk to Defeat MND isn’t just another fundraising event—it’s a personal journey. Every year, he dedicates countless hours to ensuring the Christchurch walk is a success, helping to unite people in support of those affected by Motor Neurone Disease (MND). His motivation? Honouring the memory of his grandfather, who passed away … Read more
Across Aotearoa, communities are coming together for the Walk to Defeat MND, raising vital awareness and funds for those affected by motor neurone disease (MND). Each walk is more than just a fundraising event—it’s a personal journey, a show of solidarity, and a way to honour those we’ve lost. For Donna McKay, this walk is … Read more