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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
In this issue:
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By October of this year, a small group of New Zealanders living with Motor Neuron Disease will begin their journey as members of the first-ever international phase 3 MND clinical trial to be offered in New Zealand, across multiple locations. The Lighthouse II trial looks at whether human endogenous retroviruses (HERVs) play a role in … Read more
On Sunday 27th February, our supporters gathered their teams to walk, run, cycle and wheel around their chosen tracks across the country. While the format this year shifted from large group events to individual or small group walks to protect our community while New Zealand is in the red level of the COVID-19 Protection Framework, … Read more
MND New Zealand is delighted to announce the appointment of Scott Arrol as the new Chief Executive. Scott will be joining the team on the 14th of March 2022. Scott has significant experience in the health and not-for-profit sectors, most recently as the Chief Executive for Dementia New Zealand. Prior to this, Scott was the … Read more
Every year, Walk 2 D’Feet is a special fundraising event providing opportunities for our community to come together to remember loved ones, friends, whānau, and honour those living with MND. The funds raised are vital for our organisations continued support for people living with MND. Due to the impacts of COVID-19 and the advice from … Read more