Machado-Joseph-Disease (MJD) is a rare neurodegenerative disease that affects muscles in the body, including those required for speech. It is prevalent in some remote First Nations communities in the Northern Territory and Queensland.
Yolŋu First Nations people from northeast Arnhem Land are among those disproportionately affected. Yolŋu knowledge is shared through clan songlines, painting of clan designs, ceremonial song, dance, and storytelling. Growing up with a strong clan-based identity is the highest priority for Yolŋu families, and language is paramount.
This is why Julie Gungunbuy, a Yolŋu researcher from Galiwin'ku community, and Balanda (non-First Nations) researcher Rebecca Amery have developed Yolŋu (Djambarrpuyŋu) alternative communication systems. Julie is the principal Yolŋu researcher working on the study exploring communication difficulties for Yolŋu living with MJD, a disease in her extended family.
