Aotearoa urged to act as Kiwis with motor neurone disease race against time
Every week in New Zealand, two people die from motor neurone disease (MND) - and two more are told they have an incurable, rapidly progressing illness that will steal their ability to move, speak, eat and eventually breathe.
This devastating diagnosis sets a brutal countdown timer ticking. The average life expectancy is just two to three years, and New Zealand has a higher incidence rate of the disease than the rest of the world. Despite this, for the more than 400 Kiwis living with MND at any one time, it is frustrating that the disease is not well recognised or understood by New Zealanders.
This June, the charitable trust Motor Neurone Disease NZ (MND NZ) is asking the country to take action. MND Action Month 2026 invites New Zealanders to tip a bucket or pour a brew - taking part in the MND Ice Bucket Challenge or Cuppa Tea for MND to help make time count for those living with the disease, and to ensure no one faces MND alone.
MND Action Month 2026 brings together these two powerful fundraising strands to highlight a stark reality: people with MND are not just losing their lives; they are losing time, moment by moment.. With no cure or meaningful treatments available, what happens in that limited time - the care, equipment, support and connection people receive - becomes everything.
“Time is something people with MND don’t have,” says Mark Leggett, Chief Executive of MND NZ. “We can’t yet stop the disease, but we can change the experience of living with it. This June, we’re asking people to step up so that every single moment counts for those facing MND.”
Throughout June - including Global MND Awareness Day on 21 June - the campaign will spotlight real stories from people living with MND, their carers and whānau.
Campaign ambassadors will be highlighting the hidden financial costs, the emotional and physical load carried by carers, and the desperate need for timely equipment.
The MND Ice Bucket Challenge injects energy and visibility, challenging participants to take the plunge in support of people facing even colder truths: health system delays, limited access to care, and inconsistent support that can rob families of precious time and quality of life.
Workplaces, schools and clubs are encouraged to nominate a brave leader, principal or coach to sit under the bucket.
Meanwhile, the Cuppa Tea for MND strand invites reflection, connection, and conversation. From a simple cuppa in the staffroom to a themed morning tea, it is a chance to gather, honour loved ones, and fund vital advocacy and research.
“A rapidly progressing disease doesn't wait for paperwork or waitlists,” says Leggett. “A person's physical needs change much faster than our current health and disability systems can keep up with. MND NZ’s support and advocacy services help people get the equipment and care they need, precisely when they need it, but we rely heavily on the backing of everyday New Zealanders to do that.”
All funds raised during MND Action Month will support Motor Neurone Disease NZ’s vital work - including personalised support services, advocacy for equitable access to care, and research, so we can ultimately change the course of this disease.
“MND is relentless. Every day counts. Every action matters. Whether you tip an icy bucket or pour a hot brew, you’re making time count for the more than 120 New Zealanders who will receive a life-changing diagnosis this year,” concludes Leggett.
To get involved, register your event, or make a donation, visit www.mndactionmonth.org.nz or www.mnd.org.nz
Join the movement: #MNDActionMonth | #TipOrPour | #IceBucketChallenge | #CuppaTeaforMND
ENDS