Media FAQ
The Muscular Dystrophy Association is the peak not-for-profit organisation providing support and hope to members of Australia’s MD community and the people supporting them.
MDA is a proponent of research undertaken at the National Muscular Dystrophy Research Centre (NMDRC) and CINRG located at the Royal Children’s Hospital, Melbourne Australia.
More than 20,000 Australians are affected by neuromuscular diseases. Approximately 5,000 have some form of muscular dystrophy.
Neuromuscular disorders affect 1 in every 1000 Australians: men, women and children. These debilitating muscle destroying disorders can affect anyone - from young children to mature adults, male or female. Their common symptom is the progressive and irreversible wasting of muscle, leading to decreased mobility and often a shortened life expectancy. Many children affected by muscular dystrophy will not reach their twenties. To date, there is no known cure.
Financial
MDA is funded almost entirely by private and corporate donations, by Trusts and Foundations and MDA’s own fundraising activities. The MDA’s accounts are independently audited annually in accordance with State and Federal Legislation and licensing requirements. All past audit results have been fully unqualified, further providing evidence of the sound nature and business principles adopted and adhered to by MDA. (more)
Services
Muscular Dystrophy Limited provides support, information and respite to families and individuals living with neuromuscular disorders through a wide range of support programs including:
- National CampMDA - MDA’s flagship respite program designed to give children and adults with debilitating muscle-destroying disorders a unique holiday experience. It also provides their primary carers a week-long break. As of March 2009, MDA has hosted 74 Camps and provided over 300,000 hours of respite, and an unforgettable experience for children and adults.
- Regular support group social activities, including a weekend respite program OperationMD ShortBreak! for children and OperationMD SWAP for adults.
- Support & Information Sessions including the annual InformationMD! Seminar & Research Update.
- Regular education programs in support of the medical and para-medical community: promoting MD through the world’s oldest MD website “The Home of MDA”, through regular publications production of DVD videos, and awareness campaigns.
Media Contact:
Boris M Struk – Executive Director MDA & Business Director National Muscular Dystrophy Research Centre.
Boris’ son Ryan is affected by Duchenne muscular dystrophy. Consequently this places Boris in a unique position as an authority on the disorder and what it means to live with it.
Lyndsey Doherty – Public Relations Manager MDA
Contact details: +61 3 9320 9555
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