Muscular Dystrophy Association of NZ

What Muscular Dystrophy Association of NZ does

Muscular Dystrophy Association of New Zealand Inc. (MDANZ) is a registered charity and member-led nonprofit founded in 1958 and headquartered at 419 Church Street East, Penrose, Auckland. It is the only New Zealand organisation focused specifically on neuromuscular conditions, serving over 2,000 members affected by more than 70 diagnoses, including muscular dystrophy, spinal muscular atrophy, myasthenia gravis, Charcot-Marie-Tooth disease, and ataxias. Services are delivered free of charge and include a nationwide Fieldwork Service, free counselling via EAPworks, condition-specific support groups (both in-person and on Facebook), the quarterly In Touch Magazine, Alert Cards for medical identification, the Bradley Jenkin Memorial Fund for non-government equipment funding, pneumonia vaccine funding, the William Pike Challenge youth program, and a Registry & Biobank for research support. The organisation operates three regional branches (Northern in Auckland, Central in Wellington, and South Island in Christchurch) and is governed by a National Council where the majority of members have lived experience of neuromuscular conditions.

MDANZ's business model is a diversified donation-based nonprofit model with six identifiable revenue streams: individual donations (one-time, monthly "Friends of MDA" at NZ$10+/month, and bequests), trust and corporate grants (including a NZ$233,174 Lottery Grants Board grant in 2021), 8% government funding, affiliate/referral revenue (Community Power electricity switching and Supergenerous tax rebate regifting), 100%-owned tele-fundraising via subsidiary Calls 4 Charity (eliminating middleman costs on phone donations), and event-driven fundraising (Miles for Muscles annual appeal). Its go-to-market is community-led, relying on regional branches, peer contacts, support groups, social media (Facebook, Instagram), and the In Touch Magazine to reach members and supporters. The organisation holds formal advocacy standing as the 7th member of the Disabled People's Organisations (DPO) Coalition, enabling representation on UN CRPD implementation, and has secured Pharmac advocacy wins such as nusinersen (Spinraza) funding for SMA.

MDANZ has no proprietary technology platform; its digital footprint is limited to a WordPress-based website (mda.org.nz), Facebook, Instagram, and payment processing through Flo2Cash. Operational technology investments are concentrated in physical accessibility infrastructure — notably two wheelchair-accessible Mercedes Benz minibuses retrofitted by Jackson Van Interiors — and a research Registry & Biobank. The organisation operates with only 7 employees, reflecting a lean, member-driven model where service delivery depends heavily on volunteer branch committees and external clinical partners.

Name

Muscular Dystrophy Association of NZ

Legal name

Muscular Dystrophy Association of New Zealand Inc.

Website

https://mda.org.nz

Company type

Private

Founded year

1958

Operating status

Operating

Headcount range

1–10 employees

Short description

Muscular Dystrophy Association of New Zealand is a member-led registered charity founded in 1958 that supports over 2,000 New Zealanders affected by 70-plus neuromuscular conditions through free nationwide fieldwork, counselling, peer support groups, advocacy, and research funding.

Ownership category

akta.pro rank

Product category

Neuromuscular Disability Support Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Services for the Elderly and Persons with Disabilities (62412)

SIC

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

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Neuromuscular condition support
• Disability advocacy services
• Member-led nonprofit
• Fieldworker community services
• Rare disease charity

Headquarters

HQ city

Auckland

HQ country

New Zealand

HQ region

Oceania

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Supply Chain, Others

Revenue model

1. Individual Donations: MDANZ operates as a registered charity relying almost entirely on voluntary donations from the general public. They offer multiple giving mechanisms: one-time donations, regular monthly giving (Friends of MDA starting from $10/month), and bequests. Donations of $5 or more are tax deductible in New Zealand.
2. Trust and Corporate Funding: The organisation receives funding from trusts and other businesses/organisations. This includes grants such as the Lottery Grants Board ($233,174 for accessible minibuses). Government funding accounts for only 8% of total funding.
3. Tele Fundraising: MDANZ's 100% owned tele fundraising company, Calls 4 Charity, handles phone-based fundraising. All dollars from phone donations go directly to MDA with no middlemen costs.
4. Power Company Partnership: Community Power donates a portion of profits to MDANZ when supporters switch their power company. This ongoing revenue stream costs donors nothing extra.
5. Supergenerous Donation Rebate: Through partnership with Supergenerous, donors can claim 33.33% donation tax rebates, with the option to regift rebates back to MDANZ, automating the tax rebate process for donors.

Go-to-market motion1 record

Distribution channels6 records

Marketing channels8 records

Core offering

Muscular Dystrophy Association of NZ (MDANZ) is a member-led registered charity that supports New Zealanders affected by over 70 neuromuscular conditions through a nationwide fieldwork service, free counselling, equipment grants, peer support groups, advocacy, and quarterly publications. The organization also funds neuromuscular research and represents the community's interests in government through the Disabled People's Organisations Coalition.

Product overview

Muscular Dystrophy Association of NZ (MDANZ) is a member-led charitable organization supporting New Zealanders with neuromuscular conditions. The organization offers a comprehensive suite of support services including the quarterly In Touch Magazine publication, Alert Cards for medical identification, the Bradley Jenkin Memorial Fund for equipment funding, free counselling services through EAPworks, a nationwide Fieldwork Service for personalized support, the William Pike Challenge youth program, and a Resource Library. The organization also facilitates community connection through Support Groups, Online Connections (Facebook-based communities), and Personal Contacts for peer support. Advocacy efforts include active participation in the DPO Coalition, research support through a Registry & Biobank, and fundraising campaigns such as Miles for Muscles. Membership is free with various tiers available to individuals and families affected by neuromuscular conditions.

Differentiator

Problem solved

Functional benefit

Products and services

• Fieldwork Service Nationwide service providing personalised face-to-face support to members with neuromuscular conditions through expert fieldworkers who travel across New Zealand (68,000 km covered in 2021).
• Counselling Service Free, confidential counselling delivered through the EAPworks practitioner network for members and their families; $3,620 funded sessions supported 31 members in 2021.
• Bradley Jenkin Memorial Fund Grant program providing funding for non-government-supported items (such as equipment) to members; in 2021, 30+ members received a combined $13,407.
• In Touch Magazine Quarterly magazine distributed to members, GPs, specialists and supporters, sharing member stories, condition information and research updates; 8,259 copies distributed in 2022.
• Alert Cards Identification cards enabling members to communicate their neuromuscular condition and emergency needs to first responders and medical professionals.
• William Pike Challenge Youth program supporting members aged 16-25 to participate in the Duke of Edinburgh's Hillary Award, building confidence and new skills; 7 youth members participated in 2022.
• Registry & Biobank Research initiative maintaining a registry and biobank that supports the neuromuscular community and enables researchers to advance understanding and treatment of neuromuscular conditions.
• Pneumonia Vaccine Funding Program providing funding for pneumonia vaccines to eligible members.
• Online Membership Free membership program offered in multiple tiers — General Member, Young/Rangatahi Member (16-25), Child/Tamariki Member (0-16), Life Member, and Friend of the Association — providing access to services, publications and support.
• Support Groups Local face-to-face and condition-specific support groups meeting in community venues across New Zealand (Auckland, Hamilton, Christchurch, Nelson, Timaru, Rangiora, Blenheim, etc.), plus broader peer communities such as Livewire and Myotonic Dystrophy groups.
• Online Connections Facebook-based online support groups and communities for specific conditions including Ataxia, CMT, DMD (Kiwi Kids), Myositis, Myotonic Dystrophy, Myasthenia Gravis, Neurofibromatosis, OPMD and SMA.
• Personal Contacts Peer support network connecting members with others who share the same or similar neuromuscular conditions for mutual support.
• Resource Library Collection of educational materials, PDFs and resources about neuromuscular conditions available to members and the wider community.

Quantifiable outcome

• 68,000km travelled by fieldworkers in 2021 to provide personalised support
• +3 more outcomes

Named customers1 record

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

Ten partnerships are on record, tiered core and minor.

• DPO CoalitioncoreStrategic or Co-development PartnerMDANZ is the 7th member of the Disabled People's Organisations (DPO) Coalition, joining Disabled Persons Assembly NZ, Blind Citizens NZ, People First NZ, Deaf Aotearoa, Kapo Maori Aotearoa, and Balance Aotearoa. This is a significant achievement allowing MDANZ to represent the views of members at the highest levels of government and work with government to monitor implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD).
• Community PowercoreGTM or Marketing PartnerCommunity Power is a New Zealand power company that shares a portion of profits with MDANZ when supporters switch their power supply. Members pay no more for power and often pay less, while donations to MDA accrue automatically through bill payments. Also offers special discount power rates to MDA members.
• Flo2CashminorOthersFlo2Cash provides secure payment processing for credit/debit card and direct debit bank payments for donations made to MDANZ, replacing the now-closed Spark 0900 donation service.
• Calls 4 CharitycoreChannel Partner/ Reseller/ DistributorMDANZ's 100% owned tele fundraising company handles phone-based donations. Because of this relationship, every dollar of phone donations goes directly to MDA with no middleman costs.
• SupergenerousminorGTM or Marketing PartnerSupergenerous is an online platform that automates the process of claiming New Zealand's 33.33% donation tax rebates. Donors can sign up through MDA's link and choose to regift rebates back to MDANZ, making original donations go further at no extra cost.
• LivewireminorStrategic or Co-development PartnerLivewire is a free, safe online community for young people aged 10-21 living with serious illness, chronic health conditions or disability. MDANZ refers youth members to this resource.
• Wilson Home TrustminorOthersSupports physically disabled children and young adults up to age 22 and their whanau in the top half of the North Island, offering grant funding, hydrotherapy, information and support.
• EAPworkscoreStrategic or Co-development PartnerMDANZ provides members and their families with free, confidential counselling through EAPworks, a network of NZ practitioners, counsellors, psychologists and other providers. $3,620 funded counselling sessions helped 31 members in 2021.
• Women & Leadership New ZealandminorStrategic or Co-development PartnerWLNZ offers professional development scholarships for MDANZ staff and members. Women in the health care sector can access scholarships of up to $5,000 for leadership development courses.
• Jackson Van InteriorsminorImplementation/ SI/ Consulting PartnerJackson Van Interiors kitted out two minibuses with reinforced floors/walls, wheelchair restraints, swing-out seats and hoists (capable of lifting 350kg), meeting NZTA safety standards.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Blind Citizens New Zealand: DPO Coalition co-member alongside MDANZ representing blind and vision-impaired New Zealanders. Directly comparable as a member-led NZ disability organisation with shared advocacy platforms and government engagement models.
• Rare Disorders New Zealand: NZ umbrella organisation for people living with rare disorders, many of which include neuromuscular conditions. Highly comparable as a small NZ charity focused on advocacy, information, and collective voice for rare-disease communities overlapping MDANZ's constituency.
• Muscular Dystrophy Canada: Canadian national voluntary health organisation for neuromuscular disorders, funding research and providing support services. Comparable in disease focus, charity structure, and advocacy role to MDANZ, with a similar small-team national operating model.
• Muscular Dystrophy UK: UK charity supporting people with over 60 neuromuscular conditions through research funding, information, campaigning, and community support. Highly comparable disease scope, member-services model, and research-grantmaking activity to MDANZ.
• Muscular Dystrophy Association (US): The original and largest US-based muscular dystrophy and neuromuscular disease nonprofit. Directly comparable to MDANZ in mission, service mix (research funding, clinical care coordination, advocacy), and member-led support model, but operating at significantly larger scale.
• Disabled Persons Assembly New Zealand: NZ umbrella disabled people's organisation and MDANZ's DPO Coalition partner. Directly comparable as a member-led disability advocacy organisation operating in the same NZ regulatory and funding environment and collaborating on UN CRPD monitoring.

Emerging players

• CMTA (Charcot-Marie-Tooth Association): US-focused CMT disease charity covering one of the neuromuscular conditions MDANZ supports. Comparable niche rare-disease charity model but focused on a single condition versus MDANZ's broader 70+ condition remit.
• Cure SMA (Spinal Muscular Atrophy): US-based organisation focused specifically on spinal muscular atrophy, one of the key neuromuscular conditions MDANZ supports. Comparable as a condition-specific rare disease charity funding research and providing family support, but narrower in disease scope.
• Neuromuscular Disease Foundation: Disease-specific nonprofit focused on GNE Myopathy, another neuromuscular condition in MDANZ's scope. Comparable rare neuromuscular disease advocacy and research funding model, though narrower in disease focus.

Regional players

• Muscular Dystrophy Foundation Australia: Australian national body supporting people affected by muscular dystrophy and neuromuscular conditions. Closely mirrors MDANZ in mission, services, and funding model across a comparable developed-market health charity context, though operating in a different geography.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/MDANationalOffice
• Instagraminstagram.com/musculardystrophynz
• LinkedInlinkedin.com/company/muscular-dystrophy-association-nz

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Muscular Dystrophy Association of NZ