The Muscular Dystrophy Association deals with a wide variety of disorders which affect muscles, nerves which control muscles and the interactions between the two. Neuromuscular conditions can strike either sex, across all ethnic groups and can first become apparent at any age. Often there is no family history.

There are more than sixty different types of neuromuscular conditions, including several different types of muscular dystrophy. They are usually inherited and sometimes may occur more than once in a family.

These conditions typically cause disabling loss of muscle strength and can result in progressive deterioration of nerves or muscles or both, depending on the condition involved. Mobility is typically affected but there can be problems with speech, breathing and heart function. The effects can also vary widely within the same condition, even in the same family.

The disability and other effects are always progressive and there are no cures. However, hopes are growing that advances in genetic and medical research will one day provide treatments that offset some of the effects in at least some of the conditions.

The Muscular Dystrophy Association is a not-for-profit incorporated society with a national office in New Zealand comprising of a small number of employees. The MDA is governed by a National Council who volunteer their time. There are four branches covering the country each with a committee who volunteer their time. There are also field workers working for the branches.

What does it do?

The Muscular Dystrophy Association provides information and support to people with a neuromuscular condition and their families. The association advocates for them, so they may improve their lifestyles. The association organises referrals, liaises with health and disability organisations, publishes a quarterly magazine, runs workshops and seminars, provides education, has a resource library and supports research. It also facilitates a support network.

How is it funded?

To effectively operate member support programmes, maintain the networks that are essential to support members, and contribute to research, the Muscular Dystrophy Association depends on grants, sponsorship, bequests and donations from organisations and individuals who share the vision.

The association has an ongoing telemarketing programme and a direct mail campaign. It holds an Annual Awareness Campaign, Bow Tie Week, which helps promote awareness of neuromuscular conditions as well as raise funds. The association receives a small amount of funding from the government because we provide a disability and information advisory service.

How can I get their help?

Contact the Muscular Dystrophy Association via:

How much does it cost?

The services of Muscular Dystrophy Association are provided at no cost to members.

Link to the Muscular Dystrophy Association website

www.mda.org.nz

This concise website provides information about the Muscular Dystrophy Association and what it offers. There are fact sheets on various neuro muscular conditions; general fact sheets on caring for someone with such a condition and also a section of information for teachers and parents and also for medical professionals. There are contact details, a photo gallery and links to related national and international sites.

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This information was compiled by the Kiwi Families team.

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