We want to share an important update with our community: the Lighthouse II clinical trial has been stopped early, following a planned interim analysis. The analysis found that the treatment being investigated, Triumeq, did not show the level of benefit hoped for in slowing the progression of motor neurone disease (MND). Lighthouse II was a … Read more
We’re deeply saddened by the recent death of David Seymour, a much-loved member of our Motor Neurone Disease NZ community. David was diagnosed with motor neurone disease in 2017. He had built a successful career in real estate, was a high achiever with a sharp wit, and wasn’t one to back away from a challenge. … Read more
Dr. Natalie Gauld, who was diagnosed with MND in 2022, is leading the MND Insight Survey, the most in-depth study of its kind in New Zealand. The survey aims to uncover what’s working, what’s not, and where urgent improvements are needed for people with MND and their families. By sharing their experiences, participants will help … Read more
October is International AAC Awareness Month, dedicated to raising awareness of augmentative and alternative communication (AAC), celebrate people who use AAC to communicate, and share the latest tools and technologies in AAC. What is AAC? AAC encompasses a wide range of communication tools and systems that people use to express their thoughts, needs, wants, and … Read more
Voice banking is the recording of your natural voice while it is still natural and strong, for the possible eventuality of losing your speech. You can voice bank on a mobile phone, computer, or digital voice recorder. As long as the recordings are produced in MP3 format, they can be used later within a speech … Read more
We first introduced you to Darren Bidois in February, when he shared his story in the lead up to the Masters Games 2024. Darren’s family have been his biggest support on his journey with MND, and this year have organised an “Icing with a Warm Cuppa” fundraising event as part of MND Action Month. Here, … Read more
On Thursday we were privileged to have Dr Emma Scotter, head of the MND Lab at the University of Auckland, and Dr Natalie Gauld, ONZM, Research Advisor and Best Practice Advocate at MND NZ, on the AM Show sofa on Three discussing motor neurone disease and this weekend’s Walk to Defeat MND. If you missed … Read more
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
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
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
In this issue:
Read online here
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