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New funding is being provided for projects that support people with Machado Joseph Disease (MJD) in the Northern Territory (NT).
MJD is a hereditary neurodegenerative condition. It is in a 'family' of neurodegenerative diseases that includes Huntington's disease. Previously known as 'Groote Eylandt Syndrome', the effects of MJD have been known to Indigenous people in Arnhem Land in the NT for at least four generations.
The new funding from the Australian Government is worth $460,000 and will be delivered to the MJD Foundation, a charity established in 2008 to improve the quality of life for Indigenous Australians living with MJD in Arnhem Land.
'People living with MJD 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,' said Jenny Macklin, Minister for Families, Housing, Community Services and Indigenous Affairs.
'The Government is investing $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.
'The MJD 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.'
Minister for Indigenous, Rural and Regional Health, Warren Snowdon, said the Government is also providing more than $280,000 to the MJD Foundation to develop educational resources and conduct workshops across the NT to support families living with MJD.
Source: Australian Government; MJD Foundation