Biogen Big

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

Natalie Gauld Photo Web 2023

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

Side View Of Elderly Woman Drinking Water

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

Random Pill Cluster Photo

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

Medication For Motor Neurone Disease

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

Side View Of Elderly Woman Drinking Water

MND NZ is extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners for…