What MND Australia does

MND Australia is the national peak body for motor neurone disease (MND) in Australia, headquartered in Phillip, ACT. Founded with research-grant activity dating to 1987 and formally established as a national body by 1993, it coordinates the work of state MND associations across all Australian jurisdictions and serves as the unified voice for Australians affected by MND. Its core service portfolio comprises the MiNDAUS national patient registry (2,688 enrolled participants), the MND Connect information helpline (1800 777 175), a library of more than 150 evidence-based resources, the National MND Lived Experience Network with 1,200+ members, and the biennial National MND Conference.

The organisation funds MND research through a structured grants program administered via its research arm. To date, it has invested more than A$52 million into Australian MND research, with A$2.55 million deployed across 13 projects in 2025 and a further A$2 million committed for 2026. It co-convenes the MND Research Collective with FightMND and has run a Genomics Roundtable with state associations, positioning itself as the coordinating hub of a national research ecosystem rather than a single-grant-giving entity.

MND Australia is a registered charity with approximately 15–16 staff, funded by individual donations, fundraising events, philanthropic grants, and corporate partnerships. In 2026 it is undergoing a merger with MND Research Australia to unify research-funding and peak-body functions under a single governance structure. Recent operational moves include the appointment of CEO Scott Mayberry-Relph in 2024 and a restructuring of the Research Committee to broaden funding reach and grant allocation.

Name

MND Australia

Legal name

MND Australia

Website

https://mndaustralia.org.au

Company type

Private

Founded year

1993

Operating status

Operating

Headcount range

1–10 employees

Short description

MND Australia is the national peak body for motor neurone disease in Australia, coordinating state associations, funding research (A$52M+ lifetime), and operating the MiNDAUS patient registry and MND Connect helpline to support people living with MND.

Ownership category

akta.pro rank

Product category

Motor Neurone Disease Nonprofit Services

NAICS

Social Assistance (624), Other Individual and Family Services (624190)

SIC

Services-Membership Organizations (8600), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Global Programs (HIV/TB/Malaria/NTDs) (HLAJAKAF)

akta.pro secondary industry

Real-World Data (RWD) / Real-World Evidence (RWE) & Observational Research Platforms (HLACAOAM)

Keywords

• Motor neurone disease charity
• Nonprofit health advocacy
• Neurological disease research funding
• Patient registry services
• Community fundraising organization

Headquarters

HQ city

Phillip

HQ country

Australia

HQ region

Oceania

Offices6 records

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Others, Marketing or Sales, Infrastructure

Revenue model

1. Donations and fundraising: MND Australia receives donations from the public, corporate donors and community fundraisers. The website features a donate button and campaigns such as MND Awareness. Donations are a primary funding source supporting research grants, care programs and advocacy.
2. Research grant funding: MND Australia awards research grants funded by donations and potentially philanthropic partnerships. The organisation awarded over $2.55 million in 2025 and $2 million in 2026 in research grants including fellowships and innovator grants. This represents a grant-making function rather than revenue generation.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

MND Australia operates as Australia's national peak body for motor neurone disease, coordinating nationwide care, advocacy, and research through a federation of state MND associations. The charity delivers free information and support services via MND Connect and a national helpline, funds MND research through an annual grants program (fellowships and innovator grants), maintains the MiNDAUS national patient registry, and runs advocacy and policy engagement on behalf of people living with MND.

Product overview

MND Australia is Australia's national peak body for motor neurone disease care, advocacy, and research. The organization operates as a service-focused non-profit rather than a traditional product company. Its portfolio consists of interconnected services including MND Connect (information and resource hub), the Research Grants Program (funding for MND research), MiNDAUS Registry (national patient registry), MND Research Collective (collaborative research initiative), National MND Lived Experience Network (patient engagement network), National MND Conference (annual knowledge-sharing event), Information Resources (evidence-based educational materials), Advocacy Services (policy influence), Clinical Trials Directory (research participation access), and State-based Support Services (direct patient care). These services work together to provide comprehensive support across the MND journey from diagnosis through care and research advancement.

Differentiator

Problem solved

Functional benefit

Products and services

• MND Connect

Quantifiable outcome

• $52 million invested in MND research to date
• +2 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core and major.

• FightMNDcoreStrategic or Co-development PartnerFightMND is a major co-funder of MND research in Australia, co-funding the Daniel McLoone Major Research Initiative with MND Research Australia. FightMND's Dr Bec Sheean serves on the MND Research Collective Board and the Discovery Research Expert Driving Team. FightMND also funds the Care Grants Manager role at MND Australia and collaborates on clinical trials (ATLAS, SPG-302) and care research programs.
• State MND Associations (MND Victoria, MND NSW, MND Queensland, MND South Australia, MND Western Australia, MND Tasmania)coreStrategic or Co-development PartnerMND Australia is the national coordinating body for seven state MND associations that collectively cover every Australian state and territory. The state associations deliver direct services to people living with MND, while MND Australia coordinates national research, advocacy and policy. This is a structured national federation model.
• MND Research Collective (including FightMND, MND&Me Foundation, and state associations)coreStrategic or Co-development PartnerThe MND Research Collective is a national collaborative research network co-convened by MND Australia and FightMND, involving discovery researchers, clinical care experts, people with lived experience, and state MND association representatives. The Collective Board includes representatives from MND Australia, FightMND, MND&Me Foundation, and each state MND association, as well as people living with MND.
• MND&Me FoundationmajorStrategic or Co-development PartnerMND&Me Foundation is a Queensland-based MND research and support organisation whose CEO Jane Milne sits on the MND Research Collective Board. MND&Me co-supports research initiatives and contributes to the national research agenda coordinated by MND Australia.
• University and research institutions (Macquarie University, University of Queensland, University of Melbourne, University of Tasmania, Flinders University, University of Wollongong, etc.)coreStrategic or Co-development PartnerMND Australia's research grants program funds researchers across multiple Australian universities and research institutions. The MiNDAUS Registry involves clinical sites at hospitals including Austin Hospital (VIC), Royal Prince Alfred Hospital (NSW), Westmead Hospital (NSW), Macquarie University Hospital, Flinders Medical Centre (SA), Sir Charles Gairdner Hospital (WA), The Prince Charles Hospital (QLD), and others. These institutional partnerships form the backbone of Australia's MND research infrastructure.

Scale indicators6 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• ALS Association: The US national ALS/MND advocacy, research funding, and care services organization. Structurally identical to MND Australia: national peak body funding research grants, providing information/resources, advocating to federal government, and operating a federation model with local chapters.
• Motor Neurone Disease Association: UK national MND association providing care services, research funding, advocacy, and information resources. Direct structural analogue to MND Australia with nearly identical mission, federation of branches, and revenue model.
• FightMND: Australia's other major MND research and advocacy charity, co-convening the MND Research Collective with MND Australia. Overlaps in cause territory but emphasizes clinical trials and drug development; a critical partner and competitor for Australian MND donations.
• ALS Canada: Canadian national ALS/MND organization providing research funding, advocacy, and patient services. Direct peer with similar operational scale, federation structure with provincial partners, and disease-specific focus on ALS/MND.
• International Alliance of ALS/MND Associations: Global network of MND/ALS patient associations of which MND Australia is a member. Operates the International Symposium on ALS/MND and coordinates knowledge sharing across national MND organizations worldwide.
• MND and Me Foundation: Queensland-based Australian MND research and support charity whose CEO sits on the MND Research Collective Board. Smaller regional peer with overlapping mission in research funding and patient support.
• Les Turner ALS Foundation: Chicago-area US ALS foundation funding research at Northwestern University and providing patient services. Comparable scale and operational model to MND Australia's national office, though geographically limited.
• ALS Therapy Development Institute: US-based nonprofit biotech focused exclusively on ALS/MND drug discovery. Different model (research-performing vs. grant-making) but highly relevant peer in the MND research and treatment ecosystem.

Broad incumbents

• Muscular Dystrophy Association: Large US nonprofit covering a broad portfolio of neuromuscular diseases including ALS/MND. Larger scale than MND Australia but overlaps in research funding, advocacy, and patient services across multiple neuromuscular conditions.

Regional players

• MND Scotland: Scotland-specific MND organization providing care, information, and research funding. Operates in a different geography but with directly comparable mission, services, and operational model to MND Australia.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 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 MND Australia