MJD Foundation



Strategic Plan 2018-2021
2018-2021 - MJDF Strategic Plan

Annual Reports
Annual Report Cover

2020/2021 - Annual Report
 - Annual Report 
2018/2019 - Annual Report 
2017/2018 - Annual Report 
2016/2017 - Annual Report
2015/2016 - Annual Report (Addendum - Fed Dept of Health funding)
2014/2015 - Annual Report
2013/2014 - Annual Report (Addendum - RIP John MacMillan)
2012/2013 - Annual Report
2011/2012 - Annual Report
2010/2011 - Annual Report
2009/2010 - Annual Report
2008/2009 - Annual Report

Financial Statements

2019/2020 - Financial Statements
 - Financial Statements
 - Financial Statements
2016/2017 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements
 - Financial Statements 

MJDF Media
ABC Radio

22 Apr 09 - ABC Radio Interview with Libby Morgan => Podcast
28 Jul 09  - National TV Campaign launched =>More
15 Aug 09 - The Weekend Australian =>More
22 Oct 09 - ABC Radio Interview with Nadia Lindop  =>Podcast
23 Nov 09 - SBS Living Black features Machado Joseph Disease =>More
08 Jun 10 - ABC Radio Interview with Nadia Lindop (Aircraft WCh Lifts) =>Podcast
16 Jun 10 - Koori Mail article on Aircraft Wheelchair Lifts =>Article
03 Dec 10 - Healthy Stories Interview - Simone McGrath =>More
03 Dec 10 - Healthy Stories Interview - Gloria O'Hare =>More
10 Dec 10 - Paul Newman grant in Koori Mail =>More
05 Mar 12 - ABC Radio Interview with Ange Chesters (Hip Hop) =>Podcast
16 Jun 12 - The Australian - "When Grief is a Family Legacy" =>Download
15 Jan 13 - NT Arts Hub - "Cameras Keep Rolling on Remote Groote Eylandt" =>More 
22 Apr 14 - ABC Lateline "Rare Machado-Joseph degenerative brain disease on the rise in NT Aboriginal communities" => Article/Podcast 
09 Aug 17 - The Australian - "Zebrafish study offers hope to MJD sufferers" =>More

MJD ResourcesGenetic Book - English

Frequently Asked Questions - Have your FAQs answered about Machado Joseph Disease and the MJD Foundation =>Download

What is MJD? - Genetics in General Practice presentation =>View here

MJD SARA client assessments DVD - Associate Professor John MacMillan demonstrates the use of the Scale for the Assessment and Rating of Ataxia (SARA) standardised medical examination =>View and dowload here

2012 Research Paper - "Mutational Origin of MJD in the Australian Aboriginal Communities of Groote Eylandt and Yirrkala"

MJDF Clinical Approach - View the video here

Dr Howard Flavell, Rehab Specialist at RDH, talks about the symptoms of MJD - View the video here

Nick Kenny, Physiotherapist, talks about physio sessions on Groote Eylandt - View the video here

Jenni Langrell, Manager Angurugu Health Centre, talks about nursing and Advanced Care Planning for people with MJD - View the video here

Michaela Jackson, Speech Therapist, talks about speech therapy sessions on Groote Eylandt - View the video here 

2017 Paper Published - Urinary continence and living with Machado-Joseph disease: Insights from a literature review and experience of the Machado-Joseph Disease Foundation

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 - 'YolÅ‹u with Machado–Joseph disease: Exploring communication strengths and needs.'

For a complete list of publications MJDF has either funded or been involved in =>Click here

Submissions/ Publications
Disability Service Model

2020-10 Publication "A community-based co-designed genetic health service model for Aboriginal Australians" => View here
2019-02 MJDF Assistive Technology Feasibility Study (Groote Eylandt) =>View here
2019-03 MJDF Submission - Remote NT and the NDIS =>View here
2019-03 MJDF Newsletter - Remote NT and the NDIS =>View here
2018-05 MJDF Disability Service Delivery Model =>Download
2018-02 MJDF Submission to Parliamentary Joint Standing Committee NDIS (Markets) =>Download
2017-08 MJDF Submission to Parliamentary Joint Standing Committee NDIS (Transition) =>Download
2017-08 MJDF NDIS Unit Costing review - comparing NDIS pricing to actual MJDF costs =>Download
2017-07 MJDF Submission to the Productivity Commision's Position Paper on NDIS costs =>Download 
2013-11 MJDF Remote & Very Remote Service Delivery Statement =>Download
013-06 Disability Audit (NE Arnhem) - A Snapshot of remote Indigenous Australian Disability =>Download


NDIS logo 

Article"Will the National Disability Insurance Scheme Improve the Lives of those Most in Need? Effective Service Delivery for People with Acquired Brain Injury and other Disabilities in Remote Aboriginal and Torres Strait Islander Communities". Australian Journal of Public Administration (Authors: Anne Stephens, Jennifer Cullen, Libby Massey & India Bohanna).

MJDF Going on Country - how MJDF makes our NDIS plans work for us =>View here

MJD and Genetics
Genetics in Primary Health

Genetics 101 - Genetics in General Practice presentation (Part 1)
What is MJD? - Genetics in General Practice presentation (Part 2)
Genetic Counselling checklist - for Doctors/Nurses =>Download 
Doing an MJD blood test - for Doctors/Nurses =>Download  
University of UTAH tour of basic genetics 

MJD Genetic Booklet - English
MJD Genetic Booklet -

DVD - MJD Family Business - Messages for Women
English    Anindilyakwa     Yolgnu Matha     Kriol

MJD Medical Information


















MJD Carer Information



Clinical Approach

MJDF Clinical Approach - View the video
Dr FlavellDr Howard Flavell, Rehab Specialist at RDH, talks about the symptoms of MJD - View the video here
Jenni Langrell videoJenni Langrell, Primary Health Care Manager Angurugu Health Centre, talks about nursing and Advanced Care Planning for people with MJD - View the video here
Medical ProtocolsMedical Protocols for Health Professionals
Help SheetsHelp Sheets when caring for a person with MJD


Instructional DVDs for safe manual transfers and aircraft travel:

Safe Manual Transfers
Manual Wheelchair Handling
Aircraft Aisle Wheelchair
Boarding & Disembarking using the DPL
Operating & Maintaining the Aircraft DP



Visit our MJD Foundation flickr gallery

Aug 2008 - MJD Foundation Launch - Groote Eylandt
Dec 2009 - Young Men's Camp
Dec 2009 - Natalya's Ramp
Apr 2010 - Gwenda's Respite trip to QLD
Jun 2010 - Aircraft Wheelchair Lift launch 
Dec 2010 - Umbakumba Bike Race
Jul 2011 - Carer Education Workshops Darwin
Jul 2011 - Carer Education Workshops Groote
Nov 2011 - Young Men's Filming project "Our Story"
Jan 2012 - Hip Hop Workshops
Feb 2012 - Elcho Island Wheelchair Lift Lauch
Feb 2012 - Backyard Blitz - Groote Eylandt
Jun 2012 - Wheelchair Prescription Workshop
Sept 2012 - Adult Learner Week
Apr 2013 - Telstra visit to Groote Eylandt
Apr 2013 - Carers' DVD launch - Saltwater & Smiles
Aug 2013 - Women's DVD launch - MJD Family Business - Messages for Women

 YouTubeVisit our YouTube channel here.


Other Foundations

Spinocerebella Ataxia Australia
Australian Huntington's Disease Association SA/NT) 
Muscular Distrophy Australia
National Ataxia Foundation - USA 
StopMJD - USA 
Genetic Alliance - USA
Ataxia UK 
Fredreich Ataxia Research Association - Australia


Groote Eylandt

Anindilyakwa Land Council 
Groote Eylandt Lodge 
Anindilyakwa Arts and Cultural Centre