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A treatment for motor neurone disease (MND) has been newly added to Australia’s Pharmaceutical Benefits Scheme (PBS), making it publicly funded there for the first time. The drug, edaravone (brand name Radicava), is now available to eligible Australians. It is not registered in Europe or the UK after questions were raised about its effectiveness, and … Read more
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
Motor neurone disease (MND) research is advancing at pace, with new discoveries bringing hope to those affected. The team at the University of Auckland’s MND Research Lab is working to uncover the genetic causes of MND in New Zealanders, develop targeted therapies, and improve support for families. Thanks to the generosity of MND NZ and … Read more
Join us for one of two MND Insight Survey webinars, where we’ll introduce the MND Insight Survey 2025, explain why it matters, and answer any questions you have. These sessions are not the survey itself but an opportunity to learn more before it launches. The MND Insight Survey 2025 is led by Dr Natalie Gauld, … Read more