As part of our action Month, the Crowe family held a Cuppa Tea and an Ice Bucket challenge in memory of their husband and dad Ian, who passed away in December last year. The Lower Hutt family hosted 60 friends and family last Sunday, and included our own Moira Young, Support Advisor for the lower … Read more
We’re growing our support! 💙 Motor Neurone Disease NZ was built on the ethos of helping people affected by MND – it’s the cornerstone of all that we do. We’re delighted to be recruiting for a second MND Regional Support Advisor for the South Island, so we can better support those in North Otago (south … Read more
When retired vet Jonathan Spencer found out in 2021 he had motor neurone disease, it was like being hit with a sledgehammer.
Today is Global MND/ALS Awareness Day 💙🌏 Every year we acknowledge Global MND Day on 21 June, as it is the solstice – a turning point. It symbolises our collective hope that this year we will have a turning point in the search for a future free from MND. Today we are thinking of the … Read more
When Kristy’s dad Kendall was diagnosed with MND in November 2019, it came as a shock to everyone. “He thought he had a knee injury, and we were expecting him to have surgery and be up and running in no time” recalls Kristy. But this was not to be. The Wellington family managed to squeeze … Read more
It’s not all hot tea and ice buckets this June! Earlier today Taranaki-born Jon Beardmore was interviewed on One Breakfast about his postman adventure in memory of his dad, who passed away from motor neurone disease 18 months ago. In what he calls “the Galapagos Postman Challenge”, Jon has taken 50 letters from an ancient … 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
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