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Machado Joseph Disease (MJD), an inherited autosomal dominant neurodegenerative disease, is the most common spinocerebellar ataxia worldwide. Characterised by progressive loss of mobility and coordination of movement, MJD has the highest prevalence in remote Aboriginal communities in the Top End of Australia, such as Groote Eylandt. In some communities, three generations of individuals in one family have been affected at the same time. Although there is no cure, evidence suggests physical activity delays disease progression.
Aboriginal families with MJD from Groote Eylandt and Ngukurr, local community researcher partners (CRPs) and a non- Indigenous researcher from James Cook University have been working together on this project. The aim is to find the best ways for families with MJD to keep walking and moving around. Families lead the research, as exercise is helping them stay strong, but they also want to know what is helping other families with MJD around the world.
The team has been listening and working together with families at the beach, in the bush, under big shady trees, in their homes and communities, speaking in each other’s languages and putting ideas together. Families feel that staying strong on the outside (physically) and on the inside (emotionally, mentally, spiritually) is critical for keeping walking and moving around as long as possible.
Research partners are now working together to combine the knowledge of families with MJD with knowledge from Western research to develop a program or ‘toolbox’ on the best ways keep walking and moving around for families to use. Families feel strongly about developing this, so their relatives now and in the future can use the tools to keep walking and moving around and living a good life for longer.
This video with researchers Joyce Lalara and Jennifer Carr was filmed at the 2017 NHMRC Research Translation Symposium.