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
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
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
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
Trapped inside a body that no longer works, unable to speak, move or, eventually, breathe. People with motor neurone disease (MND) know this is how their life will end, and with no treatment or cure available, it is a terrifying fate. Tofersen (brand name Qalsody) is an investigational drug developed by the company Biogen to … Read more
We are very pleased to welcome Dr Natalie Gauld to Motor Neurone Disease NZ as Research Advisor and Best Practice Advocate. Natalie is a pharmacist with a MPharm and PhD degrees and has honorary roles in the Department of Paediatrics and School of Pharmacy at the University of Auckland. She is passionate about improving access … Read more
Today, Pharmac has published the minutes of the August PTAC (Pharmacology and Therapeutics Advisory Committee) meeting, where the proposal to defund food thickeners for people with MND with a swallowing disorder was discussed. The recommendation from the advisory committee is for access to funded food thickeners be retained in the community for people with MND … Read more
Late last week we were advised Medsafe had updated the prescribing regime for Riluzole, a drug that can slow the progression of some types of MND. The change indicated repeats could no longer be prescribed by GPs, and instead would have to come from a specialist. This issue was raised directly with Medsafe, and they … Read more
Motor Neurone Disease NZ has been made aware of a change Medsafe has recently made to the prescribing regime for Riluzole (Rilutek). Riluzole can slow the progression for amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP) – the most common types of MND. Our understanding is that the changes mean GPs no longer can … Read more
MND NZ is extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners for…