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Natalie was diagnosed with MND in November of 2022 and as is the case for everyone in this situation had a lot to process and go through along with her loved ones. It was discovered that she has one of the slower progressing versions of MND, so Natalie decided to do everything in her power … Read more
MND NZ is extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners for…
It’s been a very wet and scary time for so many affected by the huge amount of rain and flooding…
The new season of New Zealand reality TV competition Treasure Island starts Monday 30 January 2023 at 7.30pm, with Joe Cotton competing on behalf of Motor Neurone Disease NZ. The television show will see eight fans of the Celebrity Treasure Island franchise compete against eight former Treasure Island competitors for a chance at $50,000 to … Read more
The harsh realities of motor neurone disease can be especially tough at Christmas. Some people have the heart-breaking knowledge that this Christmas will be their last. Others are facing their first Christmas with an important person missing. Across the motu families will be spending quality time together, having conversations around the dinner table, singing carols, … Read more
Update from Dr Alan Stanley, Consultant Neurologist and Principal Investigator for Lighthouse II Phase 3 clinical trial. Lighthouse II is an international clinical trial looking at whether human endogenous retroviruses (HERVs) play a role in motor neurone disease (MND), and whether anti-retroviral therapy might slow the progression of the disease. HERVs are ancient viruses that … Read more
With Christmas just around the corner MND New Zealand is pleased to offer free access to the Featherbed Tales online talking e-books and greeting card service. The web-based platform allows people with MND and their family to quickly and easily record (and re-record!) audio to play alongside the pages of illustrated digital story books, nursery … Read more
The inaugural webinar in the newly developed MND New Zealand Community Forum series went successfully, with an impressive turnout and high engagement during the Q&A session. The webinar also saw the announcement of the publication of the NZ-based Best Practice Recommendations for the Care of People with MND. “As a early stage slow progressing MND … Read more
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
In his inaugural lecture on 17 October 2022, Professor Shaw gave insight to the remarkable progress recently achieved with a pioneering gene therapy delivery method for patients with spinal muscular atrophy (SMA).  SMA is characterised by the loss of motor neurons, or nerve cells, in the spinal cord and is classified as a motor neuron disease. This progress has sparked a proliferation of … Read more
Join us for this inaugural webinar in the newly developed MND New Zealand Community Forum where leading researchers and neurological practitioners will provide an update on key areas of motor neurone disease research happening on both sides of the Tasman. Register for the MND Community Forum Webinar – 8 November 2022 Registration to this webinar … Read more
MND New Zealand welcomes the announcement of Professor Chris Shaw in his appointment to the Hugh Green Chair in Translational Neuroscience in the Centre for Brain Research at the University of Auckland. The Hugh Green Foundation has generously endowed this Chair in Translational Neuroscience and the Hugh Green Biobank in perpetuity in the Centre for … Read more