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We are very pleased to announce the appointment of Mark Leggett to the permanent role of Chief Executive, after filling the interim position for the last few months. Mark is an experienced senior manager with a background (originally nursing and midwifery) in clinical health services, leading to broad senior executive roles across public and private … Read more
We are thrilled Dr Emma Scotter has been appointed a Member of the New Zealand Order of Merit for outstanding services to motor neurone disease (MND) research, as part of today’s Kings Birthday Honours. We are immensely very grateful to Dr Scotter for her unwavering passion to tackle MND with new approaches and insights, for … Read more
THE GOOD CAFE (formerly the Community Cafe) is a vibrant hub of hospitality and delicious breakfast every Tuesday morning, raising tens of thousands of dollars for various charitable projects. As part of MND Action Month, The Good Café will be raising funds for Motor Neurone Disease NZ on Tuesday, 11 June. “We cook a hot … 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
MND Action Month is back for 2024! Gather your workmates, your whānau, and your friends and let’s do whatever we can to make time count for people with motor neurone disease this June. When raising awareness about tough diseases, like MND, there’s no denying that conversation and connection go a long way. Recognizing this power … 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.
On Saturday 18 May three New Zealand riders will embark on the cycling trip of a lifetime, traversing the USA, from San Francisco to New York, to raise $51,500 for MND research and support.
After losing her mum to motor neurone disease, Jen Smart saw a need to support grieving families.
In the final instalment of Newshub’s three-part series on motor neurone disease, journalist Amanda Gillies spoke with Dr Emma Scotter, head of the Motor Neuron Disease Research Lab at the Centre for Brain Research, on recent breakthroughs in understanding the genetic code of MND. We are truly grateful to Dr Scotter and her passionate team … Read more
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
This year’s Walk to Defeat MND was a resounding success, bringing together communities from Wellington, Christchurch, and Auckland to raise much needed awareness, not to mention an astounding $123,390 for MND support and research! Through months of planning in whatever spare time that could be spared the tireless dedication of some quite remarkable volunteers were … Read more