MJD Foundation

Resources

 

Newsletters
Newsletters


Edition 1 - Summer 2008/2009
Edition 2 - Autumn 2009
Edition 3 - Winter 2010
Edition 4 - Autumn 2011
Edition 5 - Spring 2012 

Annual Reports
AR 2013-2014


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

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 

MJD ResourcesGenetic Book - English

MJD and MJD Foundation Overview - download an overview of Machado Joseph Disease and the MJD Foundation =>Download

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"

"Living with Machado Joseph Disease - A Guide for all Australians" =>Download

NDIS
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).

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 -
Anindilyakwa

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

MJD Medical and Carer Information

 

Medical ProtocolsMedical Protocols for Health Professionals

Help Sheets

Help Sheets when caring for a person with MJD


flickr

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.com - USA 
Genetic Alliance - USA
Ataxia UK 
Fredreich Ataxia Research Association - Australia

 

Groote Eylandt

Anindilyakwa Land Council 
Groote Eylandt Lodge 
Anindilyakwa Arts and Cultural Centre 
GEBIE 
GEMCO