Media Release by The Hon Jenny Macklin MP

$1.7 million to help Machado Joseph Disease sufferers

Joint Media Release with:

  • The Hon Warren Snowdon MP, Member for Lingiari

The Australian Government today pledged $1.7 million to support Machado Joseph Disease (MJD) sufferers and their families in the Northern Territory.

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.

Providing specialised assistance to people affected by MJD will go a long way to support patients, their families and carers living with the disease.

This funding will be provided through the Aboriginals Benefit Account for the next five years to build awareness of the disease, improve services, increase research and education and implement practical solutions to help sufferers and their families.

The grant was announced at the Sydney launch of the MJD Foundation, founded to provide a better quality of life for people with the disease on Groote Eylandt, Bickerton Island and in communities across Arnhem Land.

It is estimated that more than 300 people are at risk of developing MJD across the NT and incidences are expected to increase significantly over the next 10 years.

The disease is most prevalent in communities on Groote Eylandt and Bickerton Island.

A focus on improving help for people with MJD is a key priority of the Regional Partnership Agreement signed between the Anindilyakwa Land Council, the Australian Government and the NT Government for Groote Eylandt and Bickerton Island communities.

The MJD Foundation will adopt a regional approach and join forces with community partners, governments and the private sector to deliver this important work.

MJD is caused by a faulty chromosome that leads to nerve cells dying prematurely, resulting in sufferers being wheelchair bound and reliant on care within 10-15 years of the first symptoms. Death occurs between six and 29 years of onset.

MJD is a hereditary condition and each child of a person who carries the defective gene has a 50 per cent chance of developing the disease. There is no known cure.