For further information and support you can contact your national or regional branch of the Muscular Dystrophy Association, as here: MDA National Office:  0800 800 337 or (09) 815 0247 Fax (09) 815 7260 Email: info@mda.org.nz Website - http://www.mda.org.nz/Northern Branch: Lion Foundation House, 3 William Laurie Place, Albany, North Shore City PO Box 300429, Albany, North Shore City, 0752 Email: support@mdn.org.nz Phone: 09 415 5682 or freephone 0800 636 787 Northern Branch Facebook Page - https://www.facebook.com/muscular.northern Wellington Branch: 49 Fitzherbert Street, Petone, Lower Hutt PO Box 33037, Petone, Lower Hutt, 5046 email: office.mdawgtn@xtra.co.nz phone: 04 589 6626 or freephone 0800 886 626 fax: 04 589 6627 Canterbury Branch 314 Worcester Street, Linwood, Christchurch PO Box 80-025, Riccarton, Christchurch 8440 email: mdacanty@xtra.co.nz phone: 03 377 8010 or freephone 0800 463 222 fax: 03 377 8951 Southern Branch: There is no branch office in the Southern region; however a team of dedicated volunteers ensure our members in this area are supported. For more information contact the MDA's National Office toll free on 0800 800 337. What is Muscular Dystrophy?The muscular dystrophies (MD) are a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later. The disorders differ in terms of the distribution and extent of muscle weakness (some forms of MD also affect cardiac muscle), age of onset, rate of progression, and pattern of inheritance. Duchenne MD is the most common form of MD and primarily affects boys. It is caused by the absence of dystrophin, a protein involved in maintaining the integrity of muscle. Onset is between 3 and 5 years and the disorder progresses rapidly. Most boys are unable to walk by age 12, and later need a respirator to breathe. Girls in these families have a 50 percent chance of inheriting and passing the defective gene to their children. Boys with Becker MD (very similar to but less severe than Duchenne MD) have faulty or not enough dystrophin. Facioscapulohumeral MD usually begins in the teenage years. It causes progressive weakness in muscles of the face, arms, legs, and around the shoulders and chest. It progresses slowly and can vary in symptoms from mild to disabling. Myotonic MD is the disorder's most common adult form and is typified by prolonged muscle spasms, cataracts, cardiac abnormalities, and endocrine disturbances. Individuals with myotonic MD have long, thin faces, drooping eyelids, and a swan-like neck. Is there any treatment?There is no specific treatment to stop or reverse any form of MD. Treatment may include physical therapy, respiratory therapy, speech therapy, orthopedic appliances used for support, and corrective orthopedic surgery. Drug therapy includes corticosteroids to slow muscle degeneration, anticonvulsants to control seizures and some muscle activity, immunosuppressants to delay some damage to dying muscle cells, and antibiotics to fight respiratory infections. Some individuals may benefit from occupational therapy and assistive technology. Some patients may need assisted ventilation to treat respiratory muscle weakness and a pacemaker for cardiac abnormalities. What is the prognosis?The prognosis for people with MD varies according to the type and progression of the disorder. Some cases may be mild and progress very slowly over a normal lifespan, while others produce severe muscle weakness, functional disability, and loss of the ability to walk. Some children with MD die in infancy while others live into adulthood with only moderate disability. What research is being done?The NINDS supports a broad program of research studies on MD. The goals of these studies are to understand MD and to develop techniques to diagnose, treat, prevent, and ultimately cure the disorder. The NINDS is a member of the Muscular Dystrophy Coordinating Committee (MDCC). For additional information, please visit: What services do the Muscular Dystrophy Association provide?The Muscular Dystrophy Association of NZ provide a wide range of services (you can view these in full on their website http://www.mda.org.nz/) as briefly outlined below: Our mission To provide New Zealanders living with neuromuscular conditions personal support and information, and to advocate, influence and promote equality of opportunity. Our vision Is that people living with neuromuscular conditions have unrestricted opportunities to achieve their full potential. Our values In all dealings with its members the Muscular Dystrophy Association will be:
In dealing with other stakeholders and the public at large the Muscular Dystrophy Association will be:
Each regional branch also has a slightly different range of activities and services that they offer in addition to their fieldworker and support services. A brief overview can be read here: Northern Branch of the Muscular Dystrophy Association Muscular Dystrophy Northern works alongside people with neuromuscular conditions and their families from Kaitaia to Taumarunui including the Bay of Plenty. The branch provides advice, support and information, networking opportunities and a range of social events. Staff and volunteers organise a camp each year for members and their families, a Christmas party and provide information at seminars and exhibitions throughout the year. Muscular Dystrophy Northern region relies on donations and grants and has an ongoing fundraising programme in order to fund their services and activities they provide to their membership. Further information, including the Northern Branch Newsletters can be found here - http://www.mda.org.nz/branches/northern-branch/ 2014 Events include:
Wellington Branch of the Muscular Dystrophy Association The Wellington branch of the MDA works alongside people with neuromuscular conditions and their family's from Taranaki to the Bay of Plenty through to Wellington. The branch provides advice, support and information, networking opportunities and a range of social events. Staff and volunteers organise camps each year for members, a Christmas party and provide information at seminars and exhibitions throughout the year. The branch relies on donations and grants and fund raises throughout the year so it can provide services and activities to its membership. Volunteering is also a vital part of the branches operating. If you would like to donate or volunteer for the Muscular Dystrophy Association please contact the Office Manager, Margaret Stoddart - margaret.mdawgtn@xtra.co.nz The MDA Fieldworkers provide one on one advice, support and advocacy mainly by home visits, phone, email or specialised workshops. The Fieldworkers understand about neuromuscular conditions and the New Zealand health and disability support systems. They can provide support letters and advocacy on behalf of members as required. Membership of the Wellington Branch is by voluntary donation. The Wellington Branch heavily relies on all sources of funding on order to cover the costs of providing the Fieldworker Service. Further information, including the Wellington Branch Newsletters can be found here - http://www.mda.org.nz/branches/wellington-branch/ 2014 Events include:
Canterbury Branch of the Muscular Dystrophy Association The Canterbury branch of the MDA works alongside people with neuromuscular conditions and their family's from Nelson and Marlborough areas across to the west coast and down to the Waitaki. The branch provides advice, support and information, networking opportunities and a range of social events. Staff and volunteers organise camps each year for members, a Christmas party and provide information at seminars and exhibitions throughout the year. The branch relies on donations and grants and fund raises throughout the year so it can provide services and activities to its membership. Volunteering is also a vital part of the branches operating. If you would like to donate or volunteer for the Muscular Dystrophy Association please contact the Office Manager, Eris le Compte - mdacanty@xtra.co.nz The MDA Fieldworkers provide one on one advice, support and advocacy mainly by home visits, phone, email or specialised workshops. The Fieldworkers understand about neuromuscular conditions and the New Zealand health and disability support systems. They can provide support letters and advocacy on behalf of members as required. Membership of the Canterbury Branch is by voluntary donation. The Canterbury Branch heavily relies on all sources of funding on order to cover the costs of providing the Fieldworker Service. Further information, including the Canterbury Branch Newsletters can be found here - http://www.mda.org.nz/branches/canterbury-branch/ 2014 Events include:
For more information on what services are available to you please see our "Things you should know about" page which includes the following:  |
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