Media Release by The Hon Jenny Macklin MP

Addressing Machado Joseph Disease on Groote Eylandt

The Australian Government has committed $100,000 to address Machado Joseph Disease (MJD) in the Groote Eylandt region through the Anindilyakwa Land Council.

The disease is a disabling genetic condition which causes nerve cells to die prematurely, causing very significant, progressive and permanent physical disability within 10 years. It is relentless and death occurs between six and 29 years of onset.

The funding will be used to engage a health professional to undertake work examining the future implications for care of MJD patients on Groote Eylandt.

The health professional will assess the provision and delivery of genetic counselling, education and testing services. An education campaign will also be developed for the general community and service providers.

More needs to be understood about MJD in the Groote Eylandt region.

While research is being pursued across the world into this and similar conditions, the impact of MJD on people in this relatively isolated region is potentially huge.

A report investigating MJD in the region said the current number of 18 people with the disease could climb sharply, with a further 128 people at risk of being identified as having the disease, over the next 10 years.

The Australian Government recognises the very disabling impact of this disease on local people – on the individuals affected by the disease, their families who care for them, and the whole community.

Better understanding of MJD itself and approaches to care and support of people with this condition need to be undertaken in a collaborative manner.

The contribution we are making to address MJD in the Groote Eylandt region will directly benefit local people and their families.