Poster Presentation Lowitja Institute International Indigenous Health and Wellbeing Conference 2016

The MJD Foundation partnering knowledge–sharing family and health information (#334)

Libby Massey 1
  1. Machado Joseph Disease Foundation, Alyangula, NT, Australia

Machado Joseph Disease has become part of the living history of Indigenous families across the Northern Territory and North Queensland. The MJD Foundation is a community based organisation working together with families to assist people who have MJD and those close to them to have better lives. 

The disease is genetic and profoundly disabling and the issues that are faced are whole of life, including the need for appropriate tailored-genetic education, health sector education, therapeutic intervention, assistive technology and family support. 

Families have driven the initiatives that will be shared today—an innovative approach to providing genetic services, research into the importance of movement and the benefits of ongoing targeted physical activity for maintaining independence and the potential use of technology to enable people to remain connected as the disease robs them of their ability to speak and move.

Partnerships have been forged with academics and experts at James Cook, Charles Darwin and Melbourne Universities and with Victorian Clinical Genetics, to craft research projects that will provide information that will enable best practice.

Underpinning this research is an absolute commitment to ensuring that families are central–not just to the kind of research that is being engaged in, but to the way that this is achieved. This is critical to ensuring that subsequent generations of those impacted by MJD are empowered and engaged positively.

The current research projects of the MJD Foundation and the model that is emerging for genuine ownership and engagement will be discussed.