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
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
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
Canterbury’s Brent Thompson was diagnosed with MND in August 2013, which he describes as “a wrecking ball through our whole world!” He and his wife Jess had a nine-month old baby girl, and were in the final stages of designing their dream home in Rangiora. Brent also ran his own business, designing and manufacturing aircraft … Read more
Receiving a motor neurone disease (MND) diagnosis can be a challenging and emotional experience for families. At just 13 years old, Mia Peters captured her experience with MND through a deeply moving piece of writing. Her mother shared, “With my daughter’s permission, I wanted to share a story Mia wrote last year for the … Read more
Meet Karuna, an inspiration with a ready smile showing us that #nothingisordinary. Despite the rapid progression of motor neurone disease, Karuna’s grace, humour, and positivity shine through. Supported by his loving children, Dee and Kriv, Karuna continues to embrace life with the help of remarkable technology like his iPad, which allows him to stay connected … Read more
Sam Stuchbury Tomorrow’s a new day. There’s light at the end of the tunnel. You can’t stop the waves of life, but you can learn how to surf. Clichés often contain a kernel of truth, which is probably why they gain traction in the first place. And over the past 18 months clichés have made … Read more
Today, as we are celebrating mothers, we are thinking of those who lost their mums to MND, and those mothers walking the hard path of MND.
Ally Barton, once an active hiker and gym goer, was diagnosed with MND at just 34, one of the youngest with the condition in New Zealand. Newshub recently interviewed husband Paul – who is calling for better data collection by making MND a “notifiable disease” – at the monthly MND Support Group in Christchurch. Thank … Read more
This week TV3’s Newshub shared a piece on Jimmy King, the first New Zealander with MND to access Tofersen. Tofersen is an investigational drug developed by Biogen to treat SOD1-type MND. Read more and watch the news segment, here: www.newshub.co.nz/home/new-zealand/2024/04/motor-neurone-disease-game-changer-treatment-soon-available-in-new-zealand In people of European descent, SOD1 gene mutations cause about 15-30% of MND cases with … Read more
Darren Bidois – a former New Zealand indoor cricket rep who was diagnosed with MND on his 58th birthday – recently candidly shared the everyday realities of living with MND with Duncan Garner as part of the ‘Editor in Chief’ podcast. “His journey is not just a battle with physical decline but a testament to … Read more