Ally Barton, once an active hiker and gym goer, was diagnosed with MND at just 34, one of the youngest with the condition in New Zealand. Newshub recently interviewed husband Paul – who is calling for better data collection by making MND a “notifiable disease” – at the monthly MND Support Group in Christchurch. Thank … Read more
Lighthouse II is an international clinical trial looking at whether human endogenous retroviruses (HERVs) play a role in MND, and whether the anti-retroviral therapy Triumeq might slow the progression of the disease. The clinical trial in New Zealand is jointly funded by Motor Neurone Disease NZ and the Neurological Foundation. Alan Stanley, Consultant Neurologist and Principal … 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
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
This year’s symposium was held virtually from 9 – 11 December. For further details on the presentations and presenters from this year’s symposium, please go to https://symposium.mndassociation.org You may also be interested in the cleverly designed ‘Periodic Table of MND Research’ summary of the symposium here: https://symposium.mndassociation.org/periodic-table/
In light of the most recent COVID-19 lockdown period, affecting Auckland and now lowering of alert levels again across the country, we want to let you know what we are doing in response to the current situation. In March, plans were put in place to enable Registry staff to continue to work from home using … Read more