Receiving a motor neurone disease (MND) diagnosis can be a challenging and emotional experience for families. At just 13 years old, Mia Peters captured her experience with MND through a deeply moving piece of writing. Her mother shared, “With my daughter’s permission, I wanted to share a story Mia wrote last year for the … Read more
Meet Karuna, an inspiration with a ready smile showing us that #nothingisordinary. Despite the rapid progression of motor neurone disease, Karuna’s grace, humour, and positivity shine through. Supported by his loving children, Dee and Kriv, Karuna continues to embrace life with the help of remarkable technology like his iPad, which allows him to stay connected … Read more
Sam Stuchbury Tomorrow’s a new day. There’s light at the end of the tunnel. You can’t stop the waves of life, but you can learn how to surf. Clichés often contain a kernel of truth, which is probably why they gain traction in the first place. And over the past 18 months clichés have made … 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.
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
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
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 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
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
In this issue:
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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