mnd-admin 
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
Motor Neurone Disease NZ is the official charity partner for the NZ Masters Games, the largest and longest-running Masters multi-sport festival in New Zealand. The 35th annual Games will be hosted in Dunedin from 3-12 February 2024. Motor neurone disease (MND) is a fatal, rapidly progressing neurological disease that leaves people locked in a failing … Read more
The Government announced this week that it has removed the last remaining mandatory COVID-19 public health requirements for a 7-day isolation period for people testing positive for COVID-19, along with the mandatory wearing of face masks for visitors to healthcare and disability facilities, will be removed. This decision does not mean COVID-19 has disappeared. COVID-19 … 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
Nominations for the David Oliver Beacon Award 2023 are open! The David Oliver Beacon Award is awarded annually, acknowledging, and celebrating those who have made a significant contribution to the MND community. The award is open to individuals, groups, and organisations that make positive contribution, improvement, or innovation in MND support or care. Dr David … Read more
MND NZ Board member Estelle and her husband Geoff have run an annual charity bridge tournament for many years, helping to raise money and awareness for a wide range of causes dearest to the Royle Epsom Bridge Club members. “Because of the tightknit nature of the bridge playing community, bridge tournaments are an amazing way … Read more