A Message from our Director of Research and Community Services
Director, Reseach and Community Services - Libby Massey
MJD, like other systemic degenerative disorders impacts on an individual’s opportunities and capacity at multiple levels. Because the disease affects every aspect of the indifivual's life (as well as their carers and family), it also crosses the departmental boundaries that government and non-government service provision inevitably impose. It affects adults, and children, it creates needs that are met by multiple arms of the health service – acute care, palliative care, aged and disability services, rehabilitation services, genetic and diagnostic medicine and community nursing.
It requires information exchange and support from within the education and training departments. Having the disease means that there are infrastructure requirements that are the responsibility of local government- such as road works and access to public facilities. It also means that access to transport services in a traditional sense is restricted (such as air travel) entailing interaction with private commercial operators and knowledge of Commonwealth regulations and legislation. In addition, the paucity of knowledge about the disease and best practice for its treatment, means that there is an urgent need for research to be conducted…. The fact that the majority of Australian people with the disease are Aboriginal people living in one of the most remote and inaccessible parts of Australia adds an additional layer –it requires that the researchers and the research that they produce are culturally informed….
The MJD Foundation will provide advocacy and support for individuals as they tackle the maze of services they require, it will be a source of information about best practice, co-ordinate and facilitate research projects, liaise between government departments and ensure that all providers have access to local community translators and cultural advisers. We will aim to ensure that it remains responsive to the concerns of the families and communities experiencing MJD by maintaining local representation at executive and board level and will implement transparent and accountable processes for all of its operations.
In this way, we hope that the gaps that currently exist will be met and that people with MJD in Arnhem Land and beyond will experience an improvement to their quality of life.
Director, Research and Community Services