What We Do

Download our Frequently Asked Questions document.

The MJD Foundation is a charity, established in 2008 that works in partnership with Aboriginal Australians, their families and communities living with Machado-Joseph Disease to provide comprehensive supports and engage in research, to provide hope for the future.

We were founded on Groote Eylandt, and have now expanded our services to other affected communities in the NT and QLD.

The MJD Foundation has been providing NDIS supports to clients living with Machado-Joseph Disease (MJD) since early 2017 in the Northern Territory and in Queensland from late 2018. Click here for our NDIS information.

Education/TrainingCurrent initiatives in this area include:
• Provision of genetic education to families/community
• Provision of genetic education to health professionals
• Working within communities to understand MJD
• Training care workers and family carers

Some of our projects:
• Genetic Ed - families/community
• Genetic Ed - resources for health professionals
• Conference Speakers
• Young Men's Camp
• Genetic Booklets in English and Anindilyakwa
• Carer Education Progam
• Wheelchair Prescription Workshop 2012
• Adult Learners' Week
• Women's Camp - Groote Eylandt
• "Living with MJD - A Guide for all Australians"
• DVD - 'Saltwater & Smiles' for carers
• DVD - 'MJD Family Business - Messages for Women'
• DVD - 'MJD Family Business - Messages for Kids"
• Vincent Aviation - Safe Lifting training
• MJD training to Medical students
• MJD SARA client assessment DVD
• Wheelchair Prescription Workshop 2014
• DVD - MJDF Proper Approach
• DVD - MJDF Clinical Approach
• Genetic Road Show 2017
• Instructional DVD - 'Safe Manual Transfers'
• Instructional DVD - 'Manual Wheelchair Handling'
• Instructional DVD - 'Aircraft Aisle Wheelchair'
• Instructional DVD - 'Boarding & Disembarking using the DPL'
• Instructional DVD - 'Operating & Maintaining the Aircraft DPL'
• Video recordings from the 2019 International MJD Research Conference

Research
Current projects are based on seeking practical solutions to help individuals living with MJD and their families.

Some of our projects:

Sleep studies
DNA Haplotyping
Speech and Swallowing research
Urinary Incontinence research
Zebrafish MJD Treatment research
Better Indigenous Genetic (BIG) Health services workshop
2017 Paper Published - Urinary continence and living with Machado-Joseph disease: Insights from a literature review and experience of the Machado-Joseph Disease Foundation
"Walking and Moving About", MJD Research keeping people stronger for longer =>More
2019 Paper Published - ‘Staying strong on the inside and outside’ to keep walking and moving around: Perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia
2019 Paper Published - 'Yolŋu with Machado–Joseph disease: Exploring communication strengths and needs'
2020 Paper Published "A community-based co-designed genetic health service model for Aboriginal Australians" => View here

Our Research Advisory Committee was set up in Aug 2009 to provide international expertise to the MJD Foundation.

In 2015 the MJD Foundation held the first International MJD Conference in Australia =>More

Equipment
Facilitating the supply and installation of appropriate adaptive equipment to individuals’ homes and community facilities in conjunction with government departments.

Download our "Assistive Technology (Equipment)" medical protocol here.

Some of our projects:
• Angurugu Library Ramp
• Jock's Ramp
• Electric Beds
• Portable Ramps
• Beach Wheelchairs
• Stowaway Portable Wheelchairs
• Custom wedge ramps
• Washing Machines/Clothes Driers
• Electric Wheelchair
• Glow in the Dark products
• Pool Hoist
• Equipment Storage Pool on Groote Eylandt
• Natalya's Ramp
• Stair Rails
• Small Equipment Grants for Non-Indigenous
• Angurugu Women's Centre ramp
• Aircraft Wheelchair Lifts
• Wheelchair scales
• Natalya's "Bedroom Blitz"
• Trikes
• Apple iPads
• Electric Wheelchair for Jock
• Bath Chair
• Elcho Island Aircraft Wheelchair Lift
• Aisle Wheelchairs
• Roper River house renovation

Advocacy
Advocacy activities undertaken by the MJD Foundation include:

• Bi-partisan approach that remains politically unaligned.
• Policy advocacy on behalf of MJD clients and their families that aims to improve their well being and quality of life through adopting international best practice and promoting practical research.
• Raising public and private sector awareness about MJD and the needs of clients and
• Fundraising ie encouraging individuals, corporations and governments to donate funds towards supporting the ongoing work of the MJDF.

Some of our activities:
• TV Advertisement
• Submissions and publications
• Letters of support re: housing, employment
• Supporting employers with MJD client plans
• Newsletters
• Annual Reports
• Magazine articles
• Media articles and media interviews
• Speaking at Conferences
• Speaking at fundraising events
• In-services/Education
• National Disability Awards finalist 2012
• DisabilityCare Australia - Disability Audit 2013
• National Disability Strategy - Indigenous Working Group participation
• National Disability Awards winner 2015
• Bakala the Film (2017)
• MJDF Disability Support Delivery Model (2018)
• Telstra Business Awards Finalists (2018)
• NT Disability Service and Inclusion Awards (2018)

Community Services
• MJD Therapy - "Staying Stronger for Longer"
• Better transport options for MJD clients
• Improved resources for Health professionals
• Increased care options
• Social and Emotional Wellbeing Program
• "Holiday of a lifetime" for clients
• "Kin Connection" trips for those in permanent care to stay close to their family and community
• Carer Support Program

Some of our projects:
• MJDF Going on Country - making our NDIS plans work for us
• Frederick and Bryan's Road Adventure
• Roseanna's Seaworld/Movieworld Adventure
• Jock's holiday to QLD
• Joyce and Melinda Lalara's family trip to QLD
• Gwenda's holiday to QLD
• ICV - Volunteer partnership
• Aircraft Wheelchair Lifts for improved travel
• Umbakumba to Naked Pools 45km bike ride
• Hydrotherapy "Water Dancing" program
• Social and Emotional Wellbeing
• Medical Protocols for the treatment of MJD
• Jamie and Lisa's holiday to Cairns
• Kin Connection trip for Gabriella
• Neurological Assessment medical services
• Gabriella's holiday of a lifetime to Sydney
• Our Story - Young Men's filming project
• Holiday of a lifetime for Rose
• Kids Makin' Beats - Hip Hop workshops
• Backyard Blitz on Groote Eylandt
• Wheelchair Prescription Workshop
• NT Libary partnership - Cameras keep rolling
• Rowena's Holiday of a Lifetime
• Carers' Week at Ngukurr
• Carers' Week on Groote Eylandt