Motor Neurone Disease NZ

05/06/2026

🌭 Today’s the day: Bunnings sausage sizzles for MND 🌭

Today (Saturday 06 June), Bunnings stores across Aotearoa are firing up the barbecues for MND Action Month — and we’d love you to drop by and show your support.

🕘 9am–3pm
📍 42 Bunnings stores nationwide
🙌 260+ volunteers on the tongs today

Every sausage sold helps fund support, advocacy, and research for people living with motor neurone disease — and helps bring MND into everyday conversations.

Some stores are also hosting Ice Bucket Challenges, so keep an eye out 👀

💙 A huge thank you to our volunteers and to Bunnings for standing alongside the MND community today.

👉 Find your local sizzle: www.bunnings.co.nz/stores

Let’s make today count — one sausage at a time.

05/06/2026

The first thing people noticed about Myles MacDuff was his presence.

Not just the physical strength that made him a respected builder and rugby player, but the way he showed up for the people around him.

He was the friend shouting the next round, the father on the sideline cheering on his children and the loyal mate who always made time for others.

“He was a real Kiwi bloke,” said his wife, Helen Casey-MacDuff.

Now, during Motor Neurone Disease Action Month, Casey-MacDuff is sharing her husband’s story.

Read more 👇

Helen Casey-MacDuff is sharing her late husband’s story during MND Action Month.

04/06/2026

🌭 This Saturday: Bunnings sausage sizzles for MND 🌭

This Saturday 06 June, Bunnings stores across Aotearoa are firing up the barbecues for MND Action Month — and you’re invited to stop by and show your support.

🕘 9am–3pm
📍 42 Bunnings stores nationwide
🙌 260+ amazing volunteers on the tongs

Every sausage sold helps fund support, advocacy, and research for people living with motor neurone disease — and helps bring MND into everyday conversations.

Some stores will also be hosting Ice Bucket Challenges, so keep an eye out 👀

💙 A huge thank you to our volunteers and to Bunnings for standing alongside the MND community once again.

👉 Find your local sizzle: www.bunnings.co.nz/stores

Let’s make time count — one sausage at a time.

03/06/2026

💚Behind their lime-green front door, musicians Chris Kemp and Kendall Todd are choosing creativity, connection and purpose – even as motor neurone disease (MND) changes everything. The dynamic musical-duo generously opened their hearts and their home to share their story across Aotearoa and the globe, showing us exactly why MND Action Month matters.

🎵Music has shaped their lives. Chris is a drummer. Kendall is a singer, songwriter and guitarist. They’ve toured together, recorded albums, and shared stages. Chris played in the support band for the legendary Chris Isaak at the St James Theatre.

But their home also tells a quieter, harder story.

🥁A drum kit that once sat proud in the lounge now sits idle, tucked away in the bedroom. Motor neurone disease has taken away Chris’ ability to hold his drumsticks.

🎙️Still, Chris and Kendall focus on the ‘can do’ not the ‘can’t do’. They have big plans to write and record a third album together, using technology to recreate Chris’ drumming.

📋“That’s our key word – normal. Just carry on!” exclaims Chris. “I still make plans.”

👉🏼Read more about Chris and Kendall’s story: https://www.mndactionmonth.org.nz/chrismndstory or link in bio

31/05/2026

Today, MND Action Month begins.

Across Aotearoa, over 50 people have already committed to making time count for those living with motor neurone disease — by hosting Cuppa Teas, taking on the Ice Bucket Challenge, and starting conversations that can’t wait.

Motor neurone disease is progressive and terminal.
It takes away the ability to move, speak, eat — and eventually breathe.
There is no cure. And no time to waste.

This June, we’re asking New Zealand to pause, feel, and act.
To feel the cold shock of reality.
To share the warmth of human connection.
And to stand alongside the 400+ New Zealanders living with MND — and the 120+ more who will be diagnosed this year.

Whether you:
☕ pour a cuppa
🧊 tip a bucket
💙 or do both.

Your action helps raise visibility, fund vital support and research, and remind people with MND that they are not facing this alone.

MND Action Month is officially on.
Will you join us and make time count?

👉 Sign up: www.mndactionmonth.org.nz/signup (link in bio)

30/05/2026

💙Defying the odds and making it to her kids’ first day of school was a major milestone for Loren Hope.

“I was diagnosed [with MND] at 34 years of age. A mother of two toddlers. I was devastated at the prospect of not being with them while they were growing up. I thought I might not even be here for their first day of school.”

👩‍🏫In 2018, two years after her diagnosis she had to give up her own teaching role – her students had been supporting their beloved teacher by writing on the board for her because she couldn’t anymore.

While she has long since defied the average life expectancy of the disease – two to three years from diagnosis – MND is increasingly debilitating her body.

“If you have been recently diagnosed or are dangling your legs over the edge of life like me – remember that you still have value, you still contribute, you still have mana, you still have learning to do.” says Loren.

“We know more than many, that time is precious. Use yours to bring love to the world, in big ways or small ways. It's the greatest gift we can give.”

Loren’s story shows us why taking action this June matters.

🤱Young mums like Loren get diagnosed with MND at 33.

🛬Young Kiwis returning home from an OE like Thomas Cockburn, recently featured in the Otago Daily Times, get diagnosed with MND at 28.

🏉Young athletes like NRL forward Jai Arrow get diagnosed at 30.

No one should face this disease alone – young people, older people, team mates, work mates, family members – MND can affect any one of us.

🪣Tip a bucket or pour a brew to make time count for everyone in Aotearoa living with MND and their whānau this Action Month!

👉 Read Loren’s story: https://mnd.org.nz/news/seeds-of-connection-a-pumpkin-festival-the-natural-world-and-life-with-mnd/

👉Sign up to MND Action Month to support people like Loren: www.mndmonth.org.nz

28/05/2026

🍵Pour a Cuppa Tea for MND this June like Michelle and her family! Support 400+ Kiwis living with this fatal disease 💙

Diagnosed with motor neurone disease (MND) in 2025 aged 56, Michelle Williamson gathered her community for a light-hearted and jovial afternoon of fun which was peppered with many poignant moments.

Michelle’s Cuppa Tea for MND was held in a room filled with friends, family, aroha, handmade items, silent raffle goodies and fine bone China cups -
with her daughter braving an ice bucket challenge outside.

“The fun, the squeals, the poem, the tears and the love that was so evident that afternoon acknowledged that Michelle and her whānau are on a very challenging journey of their own, but they are certainly not alone,” says MND NZ Regional Support Advisor Rachel Woodworth.

Pictured: Michelle's niece and sister at her Cuppa Tea for MND

☕Every cuppa poured makes a difference

🧁Join the Cuppa Tea for MND: mndactionmonth.org.nz
👉 Read Michelle's Cuppa Tea story: mnd.org.nz/news/cups-and-buckets-overflow-with-aroha-to-support-mnd-nz

26/05/2026

Get a kick start on your fundraising and sign up for MND Action Month! 💥 It’s time to grab the bucket out of the garage or grab that new teapot you’ve been waiting to use.

We’ve got ten special prize packs to give away – all you have to do is…
🧊Sign up to the Ice Bucket Challenge or Cuppa Tea for MND
🫖Raise $100 or more
❄️Do the above by June 5th!

Everyone who ticks the boxes will go in the draw to win a prize pack, valued at $60!

Fundraise your way and together, we can make time count. 💙

Follow the link here to sign up: https://www.mndactionmonth.org.nz/

25/05/2026

💙We pay tribute to the former AFL footballer, Australian of the Year and Fight MND founder and campaigner Neale Daniher, who died at the age of 65 on Monday 25 May. Our heartfelt condolences and aroha go to Neale’s family, friends and colleagues on both sides of the Tasman and around the globe.💙

“His wish was simple but powerful - to help create a world where no one has to face this disease. But beyond that he wanted to leave a legacy that says this “No matter the odds, no matter the diagnosis, we all have the power to fight, to smile, and to do. Because the mark of a person isn’t what they say, "it’s what they do”.
We will forever remember him for the lasting impact that he has made on us all. He has inspired, he has loved, he has lived and it would only be fitting to finish with his words - Play On.” – Daniher Family

May you forever play on peacefully, Neale.

Read more about Neale’s legacy: https://www.abc.net.au/news/2026-05-25/ex-essendon-afl-player-coach-neale-daniher-dies/104227390

25/05/2026

We are sending our thoughts and aroha across the Tasman to NRL and Queensland State of Origin Player Jai Arrow (30) and his family in the wake of his MND diagnosis last week. 💙And to every person across Australasia who is living with MND.

MND Australia CEO Clare Sullivan recently spoke with A Current Affair about Jai’s diagnosis and the challenges of fragmented MND data across Australia.

In New Zealand, Motor Neurone Disease NZ has funded the New Zealand MND Registry since 2017, led by Dr Sarah Buchanan from the Neurology Department at Dunedin Hospital, and the University of Otago. We encourage every person living with MND in New Zealand to sign up. The Registry supports vital research and helps shape the future of care and support services.

The MND Registry, alongside the MND Lab led by Dr Emma Scotter at the Centre for Brain Research, firmly links Kiwi’s with MND to the international effort to discover more effective treatments for this terminal disease.

Clare also reflected on the powerful outpouring of support from the MND community in Australia and beyond. Watch the full interview below ⬇️

Find out more about the New Zealand MND Registry: https://mnd.org.nz/research/mnd-registry/

"Nothing is going to take me out easy." That is the heartbreaking but defiant vow from NRL star Jai Arrow, following his shock diagnosis with Motor Neurone D...