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MND Action Month is back for 2024! Gather your workmates, your whānau, and your friends and let’s do whatever we can to make time count for people with motor neurone disease this June. When raising awareness about tough diseases, like MND, there’s no denying that conversation and connection go a long way. Recognizing this power … Read more
Today, as we are celebrating mothers, we are thinking of those who lost their mums to MND, and those mothers walking the hard path of MND.
On Saturday 18 May three New Zealand riders will embark on the cycling trip of a lifetime, traversing the USA, from San Francisco to New York, to raise $51,500 for MND research and support.
After losing her mum to motor neurone disease, Jen Smart saw a need to support grieving families.
In the final instalment of Newshub’s three-part series on motor neurone disease, journalist Amanda Gillies spoke with Dr Emma Scotter, head of the Motor Neuron Disease Research Lab at the Centre for Brain Research, on recent breakthroughs in understanding the genetic code of MND. We are truly grateful to Dr Scotter and her passionate team … Read more
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
This week TV3’s Newshub shared a piece on Jimmy King, the first New Zealander with MND to access Tofersen. Tofersen is an investigational drug developed by Biogen to treat SOD1-type MND. Read more and watch the news segment, here: www.newshub.co.nz/home/new-zealand/2024/04/motor-neurone-disease-game-changer-treatment-soon-available-in-new-zealand In people of European descent, SOD1 gene mutations cause about 15-30% of MND cases with … Read more
This year’s Walk to Defeat MND was a resounding success, bringing together communities from Wellington, Christchurch, and Auckland to raise much needed awareness, not to mention an astounding $123,390 for MND support and research! Through months of planning in whatever spare time that could be spared the tireless dedication of some quite remarkable volunteers were … Read more
Trapped inside a body that no longer works, unable to speak, move or, eventually, breathe. People with motor neurone disease (MND) know this is how their life will end, and with no treatment or cure available, it is a terrifying fate. Tofersen (brand name Qalsody) is an investigational drug developed by the company Biogen to … Read more
There are many people who have contributed to MND NZ over its past decades, but possibly none more so than Beth Watson who sadly passed away in June 2023. Beth Watson was a tireless advocate for people with motor neurone disease (MND) and the work of MND NZ for nearly 25 years including thousands of … Read more
Embark on the momentous trek up Mt Kilimanjaro in Tanzania to help support people living with MND. 4 March – 12 March 2025 IMPORTANT NOTE ALL REGISTRATIONS, INCLUDING PAYMENTS, MUST BE COMPLETED WITH INSPIRED ADVENTURES VIA THIS LINK: https://inspiredadventures.com.au/event/mndnz-kilimanjaro-2025/ REGISTER AND PAY HERE Our Challenge Trek to Mt Kilimanjaro is a fantastic collaboration with MND Victoria, who … Read more
Independent Living Services’ Comfortable with Money workshops are back for 2024. Join the programme and take back control of your finances. First intake for 2024: Weekly on Wednesdays from March 13th, 6:30pm-8:00pm online. These FREE online workshops are designed specifically for people living with disability and their families, tāngata whaikaha Māori and tagata sa’ilimalo. Find … Read more