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We’re proud to share the findings of our MND Community Survey, and appreciate the time and effort of those who participated. We know you’ll be keen to see the results, which focused on six key areas: Supporting people with MND Needs of people with MND Connecting with MND New Zealand – people with MND & … Read more
MND New Zealand was chosen as the charity beneficiary of the Grocery Charity Ball 2019. The premier event on the grocery industry social calendar has directed over $3million to charitable trusts since it began in 2004, with support from sponsor organisations including Foodstuffs, Countdown and the New Zealand Food & Grocery Council. Held at Sky … Read more
We have been closely following the Medsafe consultation on the changes to the prescribing restrictions of riluzole (trade name ‘Rilutek’). In April we raised concerns that some of our clients had been prescribed riluzole by their general practitioner. Under the Medicines Act 1981, Rilutek can only be prescribed by specialist physicians who care for patients with … Read more
Research is a vital key that will one day help to unlock a cure for MND. The Centre for Brain Research at Auckland University is currently looking for volunteers to help with a study into the function of the blood-brain barrier in Motor neurone disease, specifically, amyotrophic lateral sclerosis (ALS). Led by Dr Emma Scotter … Read more
Bright and early this morning, our major supporter, Emirates Team New Zealand revealed their first AC75 monohull boat to the world at Auckland’s Viaduct Harbour. The boat was christened ‘Te Aihe’ (Dolphin) by MND New Zealand representative Marcus Gerbich. Congratulations Emirates Team New Zealand on the successful launch! If you’ve always dreamed of getting up … Read more
MND New Zealand supports people living with Motor Neurone Disease, their carers, families and whanau, and the Health Professionals who work with them throughout New Zealand. We’re currently on the lookout for new members to join our National Council which meets five times a year to help govern and set the strategic direction for our … Read more
Living with MND is incredibly challenging, and providing practical support to people living with MND is very important to us. With this in mind – we’re delighted to let you know that in conjunction with Corporate Sponsor, Fulton Hogan, we’ve just launched the Fulton Hogan MND New Zealand Support Fund. The fund has been set … Read more
West Coast woman Samarra Wright is one of three people in her family currently living with MND .The SOD1 Gene responsible for familial MND is prevalent in Samarra’s family – 32 of her family members have been identified as carrying the gene. Samarra along with her husband and children recently worked with Attitude TV, creating … Read more
MND New Zealand are proud to share our Strategic Plan for the next 3 years. The 2019-2022 plan (July-June) is the result of the collaborative work undertaken on behalf of the MND community by MND New Zealand staff and National Council members. It is also a result of the in-depth consultation with our wide range … Read more
Following our 3rd April article, ‘Prescribing of Rilutek (Riluzole) – What you need to know’, we would like to update you on current progress. Recently it has come to our attention that some of our clients have been prescribed the drug Riluzole (trade name “Rilutek”) by their General Practitioner. Under the Medicines Act 1981, Rilutek can … Read more
As part of MND Awareness Week 2019 (17-23 June) and to celebrate Global MND Awareness Day on 21st June, MND New Zealand hosted “An update on MND Research – Homegrown and Abroad” in Auckland with guest speakers Professor Chris Shaw, Dr Emma Scotter , MND Registry Curator Kerry Walker and MND New Zealand Community & … Read more
As part of Awareness Week 2019, MND New Zealand launch their 3 year research strategy focusing on cure, care, communication and collaboration. As part of Awareness Week 2019, MND New Zealand launch their 3 year research strategy focusing on cure, care, communication and collaboration. MND New Zealand’s Research Strategy aims to develop a globally connected, … Read more