Machado-Joseph disease (MJD) and Spinocerebellar Ataxia Type 7 (SCA7) are dominantly inherited, neurodegenerative diseases causing very severe disability.
The MJD Foundation is a grassroots community organisation. Our mission focuses on working in partnership with our clients, families and communities affected by MJD and SCA7.
MJD Foundation’s ‘Our Way’ approach is based on a strong Aboriginal Community Worker two-way engagement model. View the ‘Proper Approach’ video and the ‘Our Way’ publication to learn more about how our clients and families are at the centre of everything we do.
We believe that our clients and families receive better support if people in their lives understand more about MJD and SCA7, and are confident, capable and knowledgeable. We provide education to clients, their families, health professionals, careworkers and other support organisations.
Our ‘Research Cycle of Knowing’ ensures MJD and SCA7 families have the best information about the disease and the ways to manage it. We listen to families to find out what’s important to them. We both lead research and collaborate with experts, embedding ‘Our Way’ to ensure cultures and values are respected. We talk with MJD researchers around the world and share the latest news with our families. We are always looking to make life better for people with MJD and SCA7. We know that it is important to keep searching for a treatment and cure.
Our families are supported by a highly skilled multidisciplinary team comprised of Aboriginal Health and Community Workers, Health Professionals and Family Support Workers. Our team listens from the heart and responds with holistic family-centred practice working in partnership with families living with MJD and SCA7, by valuing and respecting a ‘two-way’ approach. We provide supports under the National Disability Insurance Scheme (NDIS), but do not limit our support to NDIS constraints.
We provide specialist clinical services including:
We strive to improve outcomes for our clients by ensuring the people who can make a difference, understand about MJD and SCA7, and understand how policies impact people’s lives. We use our influence to encourage meaningful and practical changes to relevant policies and practices. We raise awareness of the impacts of MJD and SCA7 on families and communities.
We are an Aboriginal controlled organisation. We have a strong and dedicated Board who support the Strategic goals of the MJDF. Our staff strive for excellence bringing their best every day in: teamwork, the delivery of our programs, financial & legal regulatory compliance, fundraising & income generation. Our workforce strategy honours ‘two-way’ working, partnering Aboriginal and non-Aboriginal staff across MJDF activities.
Launched on Groote Eylandt in 2008, the MJDF now works across Northern and Central Australia, including Arnhem Land, Darwin, Elcho Island and Far North Qld. We support Aboriginal and Torres Strait Islander Australians and their families living with MJD and SCA7 across the Archipelago communities of Angurugu, Umbakumba and Milyakburra, as well as Darwin, Alice Springs, Nhulunbuy (and the Gove Peninsula), Galiwin’ku (Elcho Island), Ngukurr, Numbulwar, Papunya, Ntaria (Hermannsburg), Santa Teresa, Gunbalanya (Oenpelli), and Far North Queensland (Cairns, Yarrabah, Townsville, Weipa and surrounds).
‘Ngeniyerriya’ — a word in Anindilyakwa (the language of Groote Eylandt) used to express empathy towards someone that is experiencing sadness, difficulty or death — is the title of MJDF’s short book that captures the story of Machado-Joseph Disease on Groote Eylandt. The collection of stories within this book offer an insight into the lives of Groote Eylandters affected by MJD, their families, friends, carers and supporters, both before and after the MJD Foundation was established on Groote Eylandt in 2008. It is also a dedication to Gayangwa and Gwen’s families affected by MJD that have already gone before us, so we can remember them and their stories — as well as their relentless efforts to fight and advocate for this disease for future generations.