Media Release by The Hon Jenny Macklin MP

$460,000 to support people with Machado Joseph Disease in the Northern Territory

Joint Media Release with:

  • The Hon Warren Snowdon MP,
    Minister for Indigenous Health and Member For Lingiari

    Senator Trish Crossin,
    Senator for the Northern Territory

The Australian Government is providing more than $460,000 to support people with Machado Joseph Disease (MJD) in the Northern Territory.

Ms Macklin said this new funding for the MJD Foundation builds on the Government’s ongoing investment for people with this disabling hereditary condition.

“MJD has a devastating impact on the individuals affected by the disease, their families who care for them, and the whole community,” Minister Macklin said.

“People are wheelchair-bound and reliant on care within 10 to 15 years of the first symptoms, and death occurs between six and 29 years of onset.

“The Government is investing almost $180,000 from the Indigenous Remote Service Delivery Special Account to support new projects in Galiwin’ku, Yirrkala, Ngukkur and Groote Eylandt.

“Projects include a Women’s Camp on Groote Eylandt which will bring together women affected by MJD with volunteer health professionals and researchers.

“Women will be able to discuss their concerns and health care priorities for themselves and their families, as well as activities needed to improve their social and emotional wellbeing.

“The Foundation will also work with the Galiwin’ku, Yirrkala and Ngukurr communities to establish activities such as fishing and camping to help bring together families who are affected to share their stories, experiences and health care priorities.”

Mr Snowdon said the Government is also providing more than $280,000 to the MJD Foundation to develop educational resources and conduct workshops across the Northern Territory to support families living with MJD.

“The Foundation will use this funding to develop more support programs and projects to improve the health and wellbeing of people affected by MJD,” Mr Snowdon said.

“MJD is a heartbreaking disease, and providing support to make life a little easier for sufferers is important. This funding will assist those people living with MJD to stay engaged in their community and culture.

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

Senator Crossin said the Government had provided $1.7 million to the MJD Foundation since 2008 through the Aboriginal Benefits Account.

“This has provided funding for health worker wages and administrative staff employed by the Foundation and research studies, Senator Crossin said.

“The MJD foundation does terrific work in the Northern Territory, and with this new investment more Aboriginal people can benefit from their services.”

MJD is caused by a faulty chromosome that leads to nerve cells dying prematurely, resulting in progressive loss of muscle control.

It is estimated that more than 500 people are at risk of developing MJD across the Northern Territory, and incidences are expected to increase significantly over the next 10 years.

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 for MJD.