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
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
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…
A new set of clinical guidelines for the management and care of individuals with MND has been published today, 8 November 2022. Developed over a number of years by a working group of New Zealand MND clinicians and funded by MND New Zealand, this first-ever New Zealand based best practice recommendations (BPRs) represent what specialists … Read more
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