Ms Desiree LaGrappe1, Ms Allison Grootendorst1, Ms Libby Massey1, Ms Rebecca Amery2
1MJD Foundation, Alyangula, Australia, 2Charles Darwin University, Darwin, Australia
Machado Joseph Disease (MJD) is a devastating genetic neurodegenerative disorder experienced globally. Initially causing impaired muscle coordination, MJD progresses to a total lack of voluntary muscle control and severe permanent physical disability. MJD prevalence in the Northern Territory (NT) Aboriginal Australian population is thought to be the highest in the world and is certain to increase¹. Due to the disproportionate numbers of Aboriginal Australians affected, their geographic dispersion, and scarce remote services, innovative, holistic ways to support and meet the complex needs of individuals and families is critical.
To this aim, the MJD Foundation (MJDF) seeks to provide a better quality of life for Aboriginal Australians and their families living with MJD. The MJDF strives to reflect the expressed needs of people with MJD and their carers in its programs and research by maintaining close and functional relationships with clients. As Aboriginal Australians are increasingly using technology in their everyday lives, the MJDF has been working with families to explore technology’s role in supporting the communication and social and emotional wellbeing effects of MJD.
This presentation will describe a fourfold interconnected program for people affected by MJD comprising a communication group, a private industry partnership to develop a new mobile app, technology enabled, practical social and emotional well-being strategies, and a qualitative research project. Technology has potential as a culturally appropriate, responsive tool to grow the capacity of people living with MJD and their families to address barriers and facilitators to engagement and improve quality of life.
₁ Macmillan J. Machado Joseph Disease SCA3. [lecture notes on the Internet]. [Herston (AU)]: Genetic Health Queensland; 2011 [cited 2017 May 04]. Available from: http://mjd.org.au/2-what-is-mjd.html
Desireé LaGrappe is nationally Registered Nurse who qualified in the USA. She migrated to Australia to pursue her passion in community and global health. She also has a medical research background with a strong focus on women’s health and its intersection with social emotional wellbeing, including mental health. She joined the MJD Foundation in September 2014 and currently holds the position of Research Officer, supporting the MJD Foundation’s core activity of research under the direction of Director, Research & Education – Libby Massey