Make MND a notifiable disease Barton interview

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

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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

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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

Beth Watson

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

Herogif

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

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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

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Darren Bidois – a former New Zealand indoor cricket rep who was diagnosed with MND on his 58th birthday – recently candidly shared the everyday realities of living with MND with Duncan Garner as part of the ‘Editor in Chief’ podcast. “His journey is not just a battle with physical decline but a testament to … Read more

Am Show

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

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Join us for an incredible day out at the iconic Auckland Waterfront on Sunday 25th of February 2024 as we walk, united with compassion and camaraderie, to support people living with MND 💙 Meet at Silo Park, located at the corner of Beaumont Street and Jellicoe Street, Auckland CBD 1010 and just a stones throw … Read more

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Join us for an incredible day out at Christchurch’s Hagley Park (southern end) on Sunday 18 February as we walk, united with compassion and camaraderie, to support people living with MND 💙 Don’t miss out on the opportunity to get your loved ones together, connect with the MND community, and enjoy a lovely morning at … Read more

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We have been so inspired by amazing stories of living well with MND, that we’d like to make this a regular feature in our e-newsletter and magazine. We are also thinking of an art feature as part of the upcoming MND Action Month in June – more on this to come, but in the meantime, … Read more

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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