Two New Zealanders are diagnosed with motor neurone disease (MND) every week. That’s the count from Motor Neurone Disease New Zealand (MND NZ), the national charity that supports people with the disease and their whānau. More than 400 people are living with it at any one time.
MND damages the motor neurones, the nerve cells that carry signals from the brain and spinal cord to the muscles we move by choice. As those cells fail, muscles weaken and waste, and walking, speaking, swallowing and breathing get harder. There’s no cure, and the pace varies a great deal from person to person.
It’s mostly a disease of mid and later life. MND NZ says it’s most common between 50 and 70, and the median age of onset here is 67. Even so, 35% of New Zealanders with MND are under 65, and 58% are men.
New Zealand’s rate is higher than the global average, at roughly two to three new cases per 100,000 people a year, against one to two internationally. MND NZ says nobody knows why. Its figures come from people registered with the charity in 2019 and 2020, which it estimates covers more than 90% of New Zealanders with MND.
The early signs
Early symptoms are often mild. MND NZ lists stumbling from weaker leg muscles, trouble holding or lifting things, messier handwriting, slurred speech or difficulty swallowing, and muscle cramps, spasms or twitching.
Often only one part of the body is affected at first, such as a left foot that keeps tripping or a weaker right hand. Some people also notice changes in their thinking or behaviour, or find they laugh or cry more easily than before.
That’s part of what makes MND hard to diagnose. Early signs are easy to put down to age, there’s no blood test for MND, and several other conditions look similar. A GP who suspects a neurological problem will refer you to a neurologist for tests.
There can be a wait to see a neurologist. If your symptoms get worse or new ones appear in the meantime, MND NZ suggests telling your doctor, because that information helps the referral.
Treatment and support
Riluzole is the only medicine funded for MND in New Zealand, MND NZ says, and it’s funded for the most common form, amyotrophic lateral sclerosis (ALS). A neurologist or respiratory specialist applies for funding under Pharmac’s criteria. The patient must have had ALS for five years or less, score at least 60% of the predicted result on a forced vital capacity breathing test, and still be able to walk, use their arms or swallow.
Riluzole doesn’t stop MND. Two early trials found a median survival gain of two to three months, and MND NZ says most later real-world studies found people lived seven to 11 months longer on average, with wide variation between individuals. Starting early and staying on it is recommended for the best effect.
MND NZ says using breathing support early when it’s needed and keeping weight on can also help people live longer. On average, people live two to three years after diagnosis, though some live 10 years or more.
MND NZ employs regional support advisors from Northland to Southland, and their service is free. They work alongside a person’s healthcare team, link them with physiotherapists, dietitians, occupational therapists, speech language therapists and community nurses, and help with government agencies and equipment services. The support line is 0800 444 474.
The charity’s Support Fund can help with home modifications, household help, respite care and equipment once public options have been tried. Its website also explains voice banking, recording your voice while it’s strong for use in a speech device later.
Research and how to get involved
MND NZ set up and funds the New Zealand MND Registry, which started in 2017. Dr Sarah Buchanan, from the neurology department at Dunedin Hospital and the University of Otago, runs it. It collects anonymised information that helps researchers and matches people with suitable studies.
MND NZ also helped fund New Zealand’s place in Lighthouse II, the first phase 3 MND trial offered here across several centres. It had 20 places across Bay of Plenty, Wellington, Christchurch and Dunedin, open to people on the registry. The trial stopped early in April 2025, after a planned interim analysis found the HIV drug Triumeq didn’t slow the disease as much as hoped.
Dr Emma Scotter, of the University of Auckland’s Centre for Brain Research, and Dr Richard Roxburgh, of the Neurogenetics Clinic at Auckland City Hospital, lead a study of the genetic causes of MND in New Zealanders. It’s now recruiting only people with familial MND. Professor Chris Shaw of King’s College London says the registry, combined with Emma’s
MND Research Hub, “firmly links Kiwi MND patients to the international effort to discover more effective treatments”.
June is MND Action Month here, and Global MND/ALS Awareness Day falls on 21 June. The next big date is Walk to Defeat MND on Saturday 7 November 2026, with community-led walks and a virtual option. Funds raised go to MND NZ’s support services and research.
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