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When Serena’s brother Michael was diagnosed with MND on Valentine’s Day 2020 everything changed. He and his young family were living in Wellington, but soon moved back home to Invercargill to be close to family. Among all the bad news and uncertainty over the future, the one bright spot that Serena recalls is that the … Read more
Beth Watson was strongly committed to supporting those impacted by MND, and was involved with MND NZ for many years as president, part of the council, and as life member. Recognising the importance of helping young children in understanding what may lie ahead when their loved ones are diagnosed with MND, Beth set out to … Read more
📌 Free online workshop on Assistive Technology The Federation of Disability Information Centres and Complex Care Group will be hosting an online workshop on assistive technology on Wednesday 29th November 12 noon till 1.30pm via Zoom, with a presentation first, followed by discussion time. This workshop will be facilitated by Emma Brockie of Living Well … Read more
Thanks to the support from Fulton Hogan, we can offer a range of grants to help cover some of the costs associated with a diagnosis of MND. Fulton Hogan became sponsors of the fund in 2019, greatly enhancing the MND NZ support service. Our Regional Support Advisors work with families to navigate and access statutory … Read more
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
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
The buzz of the crowd, quiet moments of remembrance, the hug of a stranger who gets it. Walk to Defeat MND community events are positive, powerful, colourful, and life-affirming. People from all walks of life find strength together, united by their experiences with MND, with the shared purpose of creating hope for others. Join us … Read more
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
💙 SEEKING VOLUNTEER ORGANISERS 💙 Walk to Defeat MND brings communities together to walk in honour, memory, and in support of people affected by motor neurone disease (MND) and raise awareness and much needed funds for research and support. Walks vary between 3-5km, they are powerchair and pushchair friendly, fun for kids, and the dogs … Read more
Walk to Defeat MND is back this February! 👏 Walk to Defeat MND brings New Zealanders together to walk in honour, memory, and in support of people affected by motor neurone disease (MND), while raising awareness and much needed funds for support and research to help stop MND in its tracks. MND is a terminal … Read more
The future of MND treatment in New Zealand: Best practice recommendations and beyond Wednesday 6 September, 20237pm – 8pm Comprehensive, multidisciplinary care is the current gold standard for treating MND. Motor Neurone Disease NZ recently facilitated the production of best practice guidelines for the care of people living with motor neurone disease. Developed over … Read more
Taupō retiree and former nurse Sally Sims, who was diagnosed with MND in 2022, is hosting a charity auction with residents at Summerset Taupō to raise money for MND research. 👉 1pm at Summerset by the Lake, Taupō 👉 Saturday 26 August 👉 Everyone welcome Local community members and businesses have donated items ranging from … Read more