Motor Neurone Disease New Zealand (2026)

Project lead: Tony O’Connor

Motor Neurone Disease (MND) is a progressive, life-limiting condition that gradually takes away a person's ability to move, speak, swallow and breathe. There are over 400 people living with MND in Aotearoa New Zealand at any one time, and the incidence here is among the highest in the world. Each week, two people in New Zealand will die from MND.

Motor Neurone Disease New Zealand (MND NZ) is the only charity in the country dedicated to supporting people affected by MND through personal support, advocacy, education and research. Point & Associates first worked with MND NZ in 2018, surveying people living with MND, their families and carers, and health professionals about the organisation's services and support. The response was strong, with 70% of people with MND and 70% of family and carers taking part, giving a reliable picture of what the community needed and valued.

In 2026, MND NZ came back to us to do it again. It had been eight years since the last survey, and it was time to check in on how well the organisation was meeting the needs of its community. This time around, the project includes surveys of people with MND, current family carers, bereaved family and carers, and health professionals. Alongside the surveys, we prepared a literature scan to ground the work in the latest evidence about community-based support for people living with MND. The project is designed to give MND NZ clear direction for its strategic focus, identify service gaps and areas of strength, provide evidence for funding and advocacy, and create a baseline for tracking outcomes year on year.

This is meaningful, careful work. We are honoured to be part of it again.