About Us

The Muscular Dystrophy Association of New Zealand Inc. (MDANZ) began in the late 1950’s as a support group for families affected by muscular dystrophy. Since then, MDANZ has broadened its scope to include many other neuromuscular conditions. We are proud to have Judy Bailey and Dame Susan Devoy as our longstanding patrons.

Our logo is a person shown in the form of DNA. This double helix represents the genetic component to many of our conditions and reflects our commitment to families and the acknowledgement of whakapapa or family histories, which are woven through the stories of our members. Our unique governance structure ensures leadership of the organisation by individuals or family members with lived experience of a condition.

We have three regional branches – Northern, Central, and the South Island – that are supported by the national office based in Auckland. MDANZ supports individuals, families and whānau by providing specialist information, practical resources, personalised support services, social networks, campaigns for public awareness and advocacy. And through our research trust, we work to improve care standards and facilitate access to potential treatments for neuromuscular conditions.

Our organisation is a registered charity and we rely almost entirely on voluntary donations from the general public, trusts and other businesses/organisations to continue our work.

 

MDANZ is proud to be a member of the Neurological Alliance of New Zealand

For more information on the Alliance, please visit our website here.

What are Neuromuscular Conditions?

“Neuromuscular condition” is a broad umbrella term that describes a variety of muscle disorders. The conditions covered by MDANZ are rare and mostly genetic. Progressive muscle wasting leads to loss of mobility and independence, and there are often major impacts on organ systems, which can result in early loss of life. Symptoms can appear at birth, or for others, not until much later in life. These conditions can be unpredictable and there are limited treatment options.

You can download a brochure about us here. 

A full list of the conditions we support is here.

To find out more about the services and support we offer, click here.

“MDANZ provided a
pillar of strength and support
for our family as we came to
grips with our diagnosis.”
Sarah