Motor Neurone Disease Nz

What Motor Neurone Disease Nz does

Motor Neurone Disease NZ (MND NZ) is a New Zealand-registered charitable trust founded in 1985 that provides free support, advocacy, education, and research funding for people affected by motor neurone disease. It is the only organization in New Zealand solely dedicated to MND, serving approximately 400 clients with the disease and roughly 5,000 affected individuals when families, whānau, and carers are included. The organization is headquartered in Auckland with a National Office and a distributed network of Regional Support Advisors covering all regions of New Zealand. Governance is provided by a Board of Trustees chaired by Lucy Haberfield, with day-to-day leadership by Chief Executive Mark Leggett.

MND NZ's service portfolio includes personalized community-based support advisory services, a Support Fund providing direct financial assistance to people with MND, the MND Registry for research data collection, comprehensive information resources, in-person support groups, online communities, and educational resources for health professionals. The organization also maintains the MND Insight Research study and produces twice-yearly newsletters. The organization operates on a donations-based revenue model — all services are provided free of charge, with funding drawn from individual donors, trusts and foundations (including the Lottery Grants Board, Aotearoa Gaming Trust, The Lion Foundation, Pub Charity, Jubilee Trust, and Lindsay Foundation), corporate sponsors (Fulton Hogan), and fundraising events such as the Walk to Defeat MND. MND NZ is a member of the International Alliance of ALS/MND Associations, the Fundraising Institute of New Zealand, the Neurological Alliance of New Zealand, and the NZ Carers Alliance. The 2025-2028 Strategic Plan formalizes five pillars: Tailored Support, Advocacy and Awareness, Education, Research, and Community Engagement.

Name

Motor Neurone Disease Nz

Legal name

Motor Neurone Disease NZ

Website

https://mnd.org.nz

Company type

Private

Founded year

1985

Operating status

Operating

Headcount range

11–50 employees

Short description

Motor Neurone Disease NZ is a New Zealand charitable trust, founded in 1985, providing free nationwide support, advocacy, education, and research funding for approximately 400 clients and 5,000 affected people living with motor neurone disease.

Ownership category

akta.pro rank

Product category

Neurological Disease Support Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (62412), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Neurological disease support
• Community charity services
• Patient advocacy support
• Health education resources
• Medical research funding

Headquarters

HQ city

Auckland

HQ country

New Zealand

HQ region

Oceania

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: As a charitable organization, MND NZ relies entirely on donations and fundraising from the community to fund its free support services. The organization receives support from trusts, foundations, corporate sponsors, and individual donors.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels4 records

Core offering

Motor Neurone Disease NZ provides free, community-based support, advocacy, education, and research funding for people affected by motor neurone disease in New Zealand. Services are delivered by Regional Support Advisors who work alongside healthcare teams to provide personalized practical, emotional, and social support, complemented by a Support Fund, the MND Registry, information resources, support groups, and online communities. The organization is funded entirely through donations, grants, fundraising events, and corporate partnerships.

Product overview

Motor Neurone Disease NZ operates as a charitable trust offering a suite of support and service products rather than a technology platform. The core offerings include free community-based support advisory services provided nationwide by trained advisors, a Support Fund for financial assistance, the MND Registry for research data collection, comprehensive information resources, peer support through in-person groups and online communities, printed newsletters, and community fundraising events such as Walk to Defeat MND. The organization focuses on five strategic pillars: Tailored Support, Advocacy and Awareness, Education, Research, and Community Engagement.

Differentiator

Problem solved

Functional benefit

Products and services

• Support Advisory Services Free specialized support and advisory service delivered throughout New Zealand by trained Regional Support Advisors who work alongside healthcare teams to help people with MND remain independent and manage their journey through the disease.
• Support Fund Financial assistance program providing direct monetary support to people living with MND to help with equipment, care, and other needs not covered by other funding sources.
• MND Registry Research registry enabling people with MND to contribute their data for research purposes, helping researchers focus their knowledge and expertise on understanding the disease.
• MND Information Resources Comprehensive information about MND covering diagnosis, symptoms, progression, types, treatment, and living with MND, available for people with MND, families, and health professionals.
• MND Support Groups In-person support groups run by volunteers connecting people affected by MND for peer support and shared experiences.
• Online Communities Digital community spaces including a Facebook support page for people affected by MND to connect online.
• MND News Newsletter Printed magazine published twice yearly featuring stories, research updates, and community news for the MND community; available in PDF format.
• MND Shop Online merchandise shop operated by MND NZ at merch.mnd.org.nz, selling branded merchandise to support fundraising for the charity.

Quantifiable outcome

• Over 400 clients with MND supported nationwide
• +1 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core.

• International Alliance of ALS/MND AssociationscoreStrategic or Co-development PartnerMND NZ is a member of the International Alliance of ALS/MND Associations, connecting with similar organizations worldwide to share knowledge, research, and best practices for supporting people with motor neurone disease.
• Fundraising Institute of New Zealand (FINZ)coreStrategic or Co-development PartnerMND NZ is a member of FINZ and subscribes to the Donor Bill of Rights, demonstrating commitment to ethical fundraising practices.
• Neurological Alliance of New ZealandcoreStrategic or Co-development PartnerMND NZ collaborates with the Neurological Alliance of New Zealand to advocate for better services and support for people with neurological conditions.
• NZ Carers AlliancecoreStrategic or Co-development PartnerMND NZ is part of the NZ Carers Alliance to support and advocate for carers of people with MND.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• ALS Canada: Canadian national ALS/MND organization funding research and delivering client services through regional teams. Comparable as a disease-specific MND nonprofit with a regional advisor model and reliance on community-led fundraising.
• MND Association (UK): Leading UK charity for motor neurone disease providing care, research, and campaigning. Closely comparable as a national disease-specific MND charity offering Regional Care Development Adviser-style support, information resources, and research funding.
• ALS Association: The largest US nonprofit dedicated to ALS/MND, providing patient services, advocacy, and research funding. Comparable as the disease-specific national peak body for MND/ALS support and research, with a similar chapter/service-network structure.
• Multiple Sclerosis Society of New Zealand: NZ national charity supporting people with multiple sclerosis through regional societies and advocacy. Comparable as a New Zealand disease-specific neurological charity delivering free community-based support and relying on donations and grants.
• Motor Neurone Disease Australia: Australian sister organization providing support, advocacy, and research funding for people with MND. Directly comparable as a disease-specific national MND charity in a neighboring geography, with a similar support-advisor service model and reliance on community fundraising.
• Parkinson's New Zealand: New Zealand national charity for Parkinson's disease providing community-based support and education. Highly comparable as a New Zealand-based, disease-specific neurodegenerative charity with a similar support advisor/regional structure and donation-funded model.
• Huntington's Disease Association (New Zealand): NZ charity supporting people affected by Huntington's disease, another progressive neurological condition. Comparable as a New Zealand-based disease-specific neurological charity delivering community-based support and relying on donations.

Broad incumbents

• Muscular Dystrophy Association: US-based nonprofit covering a broader portfolio of neuromuscular diseases including ALS. Comparable as a large disease-focused health charity funding research and patient services, but with broader disease scope than MND NZ's single-disease focus.

Regional players

• Rare Disorders New Zealand: NZ advocacy umbrella for people living with rare disorders including MND. Comparable as a New Zealand rare-disease advocacy organization, relevant for collective policy and funding advocacy on behalf of MND patients.

Others

• Neurological Alliance of New Zealand: Umbrella organization of NZ neurological condition charities of which MND NZ is a member. Comparable as a coordinating advocacy body for neurological conditions in NZ, providing policy voice and collective bargaining on shared issues.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Instagraminstagram.com/mnd_nz/?hl=en
• LinkedInlinkedin.com/company/mndnz

Revenue estimate

Valuation estimate

Number of profiles

Profiles21 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Motor Neurone Disease Nz