MJD Foundation

Welcome to the MJD Foundation

 

Mission Statement

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

The MJDF uses the term Aboriginal in preference to Aboriginal and Torres Strait Islander in recognition that Aboriginal people are the original inhabitants of Arnhem Land. Aboriginal and Torres Strait Islander is used in the national context. No disrespect is intended to our Torres Strait Islander families and communities. The MJDF acknowledges the inclusion of Torres Strait Islanders who may be affected by MJD. 

Gayangwa’s Story

GayangwaGayangwa is an Anindilyakwa woman of Groote Eylandt, she is 73 years old, and Machado-Joseph Disease has been a part of her life as long as she can remember. 

Her father developed the disease when he was an older man, and all 6 of her brothers and sisters were affected by their 40s.  She was the primary carer for two of her sisters’ children for over 15 years. Now the third generation of her family is sick - her 21 year old niece passed away in 2014, and she has nieces, nephews and grandchildren with the disease.

Few people have the insight and experiences living with the disease that Gayangwa has, and she brings to her role within the MJD Foundation a fierce determination to improve life for her family.  Her journey through ‘shame’ and ‘blame’ to proud champion is an encouragement to the many people she meets and her quiet dignity and perseverance for them is an inspiration. 
=> Gayangwa's speech from the MJD Foundation Launch (30th Aug 08)                     

       

 


Latest News

Staying Strong

Aug 19 - Winners announced for the MJDF Top End, Top Ten Raffle: =>View here 
Jul 19 - Going on Country with MJDF - making our NDIS plans work for us=>View here 
Apr 19 - MJDF's manual transfer and aircraft travel training DVDS now available: =>View here
Mar 19 - MJDF's newsletter - Remote NT and the NDIS =>View here
Feb 19 - Assistive Technology feasibility study for Groote Eylandt =>View here
Mar 19 - PhD therapy publication - Staying Strong Inside and Outside =>View here
Dec 18 - MJDF Annual Report 2017-18 =>View here

=>More News


Coming Events

abstract submission extension jpeg

SAVE THE DATE - 12-13 November 2019 - International MJD Research Conference November (WASHINGTON)

The MJD Foundation, together with the Israeli MJD Association is pleased to announce, we will be hosting the 2019 International MJD Research Conference November 12 -13 as a satellite meeting of the International Ataxia Research Conference being held in Washington, DC, USA November 14- 16.  Abstract submission now closed!

This year's theme is  STRENGTHENING FAMILIES & COMMUNITIES THROUGH SCIENCE & PRACTICE.  The purpose of this satellite meeting of the International Ataxia Research Conference (IARC) is to advance international research in Machado-Joseph Disease (MJD), also known as Spinocerebellar Ataxia Type 3 (SCA3), and foster international collaborations to assist the scientific discovery of treatments and innovations in care for people living with MJD, their families and communities. We believe through strengthening partnerships we can achieve a future free from MJD.

Our mission is to elevate the voiced research interests of people living with MJD globally and to raise awareness about the Australian Aboriginal experience of MJD. This satellite meeting follows the 2015 International MJD Research Conference, hosted by the MJD Foundation (Australia) which took place in Cairns, Australia. We hope to generate broader interest among international researchers to travel to Australia to collaborate and attend a future conference. We look forward to seeing you in Washington, D.C., USA in November!

2019 International MJD Research Conference =>View here
Submit an abstract
here
Head directly to the conference registration page here


=>Click here for other News & Coming Events