Myrddin Gwynedd 
For 30 years, it was part of Helen and Keith’s daily ritual — until motor neurone disease slowly took everything away. In this moving first-person reflection, Keith Thomas shares the heartbreak, resilience, and enduring love that defined their final years together. We’re honoured to share Helen’s story as part of MND Action Month — a … Read more
It began with a holiday pottery class — a young girl at the wheel, her mum by her side, both falling quietly in love with clay. Over time, that spark became JMT Ceramics: a mother–daughter studio grounded in patience, creativity, and connection. When Michelle’s partner lost his father to motor neurone disease (MND), the grief … Read more
Today is Global MND/ALS Awareness Day — a date that falls on the solstice for a reason. It’s a turning point. It marks the shift — the return of longer days and a sense of renewal. We remember the lives lost to motor neurone disease (MND), stand with those living with it, and reflect on … Read more
Behind a set of double doors on a quiet West Auckland street sits a place that hums with quiet energy. From the outside, it’s a shed. But to Kevin Norton, it’s home. A sanctuary. A life lived among machines. Now living with motor neurone disease (MND), Kevin has adapted his world around what he loves … Read more
When Isaiah Masters lost his uncle Scott Bowman to motor neurone disease (MND), he didn’t want to sit with the sadness — he wanted to move with it. So, during MND Action Month, he’s turning grief into grit through Scotty’s MND400 — a challenge that’s raw, physical, and deeply personal. Between 16 and 29 June, … Read more
This MND Action Month, we’re proud to share some beautiful new additions to the MND NZ merchandise range — created to raise awareness, honour loved ones, and support the vital work we do alongside people living with motor neurone disease and their whānau. Held every June, MND Action Month is a time to raise awareness, … Read more
Michael Brown—known to most as Mike or “Browno”—has always met life head-on. Sporty by nature and community-minded at heart, he’s spent years in the surf and on the diamond. As Event Water Safety Manager with Surf Lifesaving New Zealand, Mike shares how he adapted to life with MND, modified his car to retain mobility and … Read more
June is MND Action Month — a time to take action, raise awareness, and make time count for New Zealanders living with motor neurone disease (MND). MND is a rapidly progressing, incurable disease that robs people of their ability to move, talk, eat, and eventually breathe. On average, a person diagnosed with MND in Aotearoa … Read more
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