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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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

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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

Darren News

Darren Bidois (Ngāi Te Rangi) and his wife Leanne are trying to focus on the positives after Darren was diagnosed with Motor Neurone Disease. Darren commissioned this Korowai (cloak) as an heirloom for his family and it arrived just the day before his 60th birthday, when this photo was taken. Photo: Supplied Every year, the … Read more

Michael

The harsh realities of motor neurone disease can be especially tough at Christmas. Some people have the heart-breaking knowledge that this Christmas will be their last. Others are facing their first Christmas with an important person missing. Across the motu families will be spending quality time together, having conversations around the dinner table, singing carols, … Read more

Cover Winter Newsletter 2022

In this issue:

  • Celebrate our fundraising heroes, including the 2022 MND Ice Bucket Challenge.
  • Learn more about international MND research trial – Lighthouse II Phase 3.
  • Meet the new staff joining the battle against MND.  
  • Get to know our Support Advisors – meet Megan Te Boekhorst.
  • Feel inspired by stories from across our community. 
  • From everyone at MND New Zealand, take care and stay in touch. 

Read online here

David Seymour is living with MND and reflects on the vital role of his family and impacts on them. My family and I have been grappling with the devastation caused by the beast that is MND, for the past three and a half years. For the first six months after receiving the diagnosis of MND, … Read more

Sometimes it’s the simple pleasure in life that are the most enjoyable. For people living with MND, everyday things like going for a walk can be a challenge. To help others understand this, Jos from Wellington put pen to paper and came up with this piece entitled “Going for a walk”.  “The sun is shining … 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

senior on a wheelchair at a airport looking outside

This report comes from an experienced traveller who has been affected by MND for a number of years, yet has travelled solo, with his motorised wheelchair from the UK to Japan, North America, Europe and Australasia. Travelling alone, while having advanced MND, and flying long distances is perfectly possible given a bit of thought and … Read more