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…
Last September, we held the first-ever MND Hui at Parliament. The hui offered the chance for people working in various disciplines across healthcare throughout the country to come together and discuss the clinical needs of people living with Motor Neurone Disease in New Zealand. What became apparent throughout the day was that there are regional … Read more
We’re proud to share the findings of our MND Community Survey, and appreciate the time and effort of those who participated. We know you’ll be keen to see the results, which focused on six key areas: Supporting people with MND Needs of people with MND Connecting with MND New Zealand – people with MND & … Read more
We have been closely following the Medsafe consultation on the changes to the prescribing restrictions of riluzole (trade name ‘Rilutek’). In April we raised concerns that some of our clients had been prescribed riluzole by their general practitioner. Under the Medicines Act 1981, Rilutek can only be prescribed by specialist physicians who care for patients with … Read more