MJD Foundation

What We Do

Download our Frequently Asked Questions document.

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MJDF Team

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.

eLearning

Education/Training
Current 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
In-Services and Education Sessions
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'

Zebrafish

 

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

Some of our projects:

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

Download our Research Grant Information Guide here.

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

Bowie ramp

Trikes

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

Bakala the FIlm

 

 

 

Bakala

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)

Beach running

 

 

 

 

Paulette fishing

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