National Campaign Returns This June—Raising Awareness And Support For New Zealanders Living With Motor Neurone Disease

Motor Neurone Disease NZ is calling on New Zealanders to tip a bucket or pour a brew this June — and join the movement to make time count for those living with motor neurone disease (MND).

MND Action Month 2025 brings together two powerful fundraising strands — the iconic Ice Bucket Challenge and the heartfelt Cuppa Tea for MND. Together, they shine a light on the daily realities of life with MND, a rapidly progressing and terminal condition that affects more than 400 people across Aotearoa at any given time.

“Motor neurone disease turns life upside down — not just for the person diagnosed, but for everyone around them,” says Mark Leggett, Chief Executive of Motor Neurone Disease NZ. “This June, we’re asking people to take action. Whether you tip a bucket or pour a cuppa, your support helps people with MND access the care, support, equipment, and connection they urgently need — and brings hope to everyone affected.”

Throughout June, the campaign will spotlight real stories from people living with MND and their whānau — highlighting the urgency of timely equipment, the emotional and physical load carried by carers, and the courage of those navigating the unknown.

The Ice Bucket Challenge injects energy and visibility — challenging participants to take the plunge in support of people facing even colder truths: system delays, limited access to care, and inconsistent support.1

Meanwhile, the Cuppa Tea for MND strand invites reflection, connection, and conversation — a moment to honour someone you love, share their story, and support the journey.

All funds raised during MND Action Month will support Motor Neurone Disease NZ’s vital work — including support services, advocacy, information provision, and research.

“Behind every statistic is a person, a whānau, a community,” says Leggett. “We can’t yet stop the disease, but we can change the experience of living with it. That’s what MND Action Month is all about.”

New Zealand has one of the highest incidence rates of MND in the world — and while its causes remain unknown, the need for action is clear.

To get involved, register your event, or make a donation, visit www.mndactionmonth.org.nz Join the movement: #MNDActionMonth | #TipOrPour | #IceBucketChallenge | #CuppaTeaforMND

Notes:

About MND

• Motor neurone disease (MND) is a fatal, rapidly progressing neurodegenerative disease that robs people of their ability to move, talk, and eventually breathe. • Often known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, MND is a group of conditions, with ALS being by far the most significant proportion. All have roughly the same pathway and always the same outcome.

• Little is understood about the causes of MND. There are currently very few treatment options available, and no cure.

• The average life expectancy is two to three years after diagnosis. Around 50% of people die within 30 months of symptom onset, and only about 20% survive longer than five years.

• Around 400 people are living with MND in NZ at any given time, with on average two people dying each week and two people receiving a diagnosis.

• The incidence rate of MND in NZ is higher than the rest of the world - researchers are trying to find out why, so we can change it.

• MND can affect adults at any age, though most diagnoses occur after the age of 40, with the highest incidence between 50 and 70.

About MND NZ

• Motor Neurone Disease NZ is the only charity focused on improving the quality of life, funding research and campaigning for people affected by MND in NZ. • We provide personal, wraparound support through our nationwide team of community based Support Advisors — travelling alongside people with MND and their whānau from diagnosis onwards.2

• Our mission is to make time count — because for people with MND and their loved ones, time is precious.

• We focus on five key areas:

• Support – emotional and practical help tailored to each person’s needs. • Advocacy – championing timely and equitable access to care and support. • Education – providing clear, relevant, plain-language information to individuals, families, and health professionals.

• Research – funding New Zealand-based studies and connecting to global developments.

• Awareness – sharing real stories from the MND community to build understanding and empathy.

• We receive minimal government funding and rely on donations, grants, and community fundraising to deliver our vital services.

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