MJD Foundation
The Machado Joseph Disease Foundation (MJDF) is a specialist disability support organisation operating across remote north and central Australia. Providing care to Aboriginal families affected by a genetic, progressive, neurodegenerative condition known as Machado-Joseph Disease (MJD), for the past decade, the MJDF has pioneered innovative care and service models under the direction of Aboriginal families.
Launched on Groote Eylandt in 2008, the MJDF now works across Northern and Central Australia, Including Arnhem Land, Darwin, Elcho Island and For North Old. We support Aboriginal and Torres Strait Islander Australians and their families living with MJD and Spinocerebellar Ataxia Type 7 (SCA7) across the Groote Archipelago, as well as Darwin, Alice Springs, Nhulunbuy (and the Gove Peninsula). Galiwinku, Ngukurr, Alice Springs and surrounding communities. Gunbalanya (Oenpelli), and Far Norther Queensland.
MJD and SCA7 are severe neurodegenerative diseases with no known cure. As the conditions progress, individuals in remote communities often need to relocate to urban areas such as Darwin or Cairns for necessary care and services. This relocation can disrupt critical connections to family, culture, language, and country, which are essential for the overall wellbeing of Aboriginal and Torres Strait Islander peoples.
The MJD Foundation’s mission is to work collaboratively with these communities to provide specialised knowledge, support, research, and advocacy to help affected individuals and families live stronger for longer. To effectively meet this mission, it is essential to ensure that communications are maintained with affected communities to ensure their voices are heard and their preferences around service delivery are respected.
‘Ngeniyerriya’ – The Story of Machado-Joseph Disease on Groote Eylandt
