Working in partnership with Aboriginal &
Torres Strait Islander Australians living with MJD and SCA7

Mission Statement

The MJD Foundation partners with Aboriginal & Torres Strait Islander communities to support families living with Machado-Joseph Disease (MJD) and Spinocerebellar Ataxia Type 7 (SCA7) by providing specialised knowledge and supports. We collaborate to conduct research, providing hope for the future, and use our influence for change so people living with MJD and SCA7 live stronger for longer. 

20141215-_DSF1817 (1) (1)

Gayangwa’s Story

Gayangwa is a Warnindilyakwa woman of Groote Eylandt. She is 79 years old, and Machado-Joseph Disease has been a part of her life for 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.

Facebook Feed

MJD Foundation

3 days 6 hours ago

Resignation of Machado Joseph Disease Foundation CEO, Nadia Lindop The Chairperson of the Machado Joseph Disease Foundation (MJDF) Jenny Macklin announced today, that after 15

MJD Foundation

4 days 11 hours ago

It was wonderful to welcome Selena Uibo: Member for Arnhem to our Groote Eylandt office this morning.

MJD Foundation

1 week 3 days ago

What a great event! The new accessible Ferris Wheel gondola was launched in Darwin today and Joyce was the star. Thanks to NT Disability Minister

MJD Foundation

2 weeks 3 days ago

Ricky and MJDF community worker Ian are heading from Darwin to Nhulunbuy today. Our Kin Connect program is one of our most important, supporting clients

MJD Foundation

3 weeks 12 hours ago

Are you a super organised person, with attention to detail and knowledge of the NDIS? We'd love to hear from you as we are looking

MJD Foundation

3 weeks 3 days ago

Our Therapy Program is expanding! We're currently looking for a Speech Pathologist and an Occupational Therapist to join our Darwin based team. A rewarding opportunity

MJD Foundation

1 month 2 days ago

A fantastic kickoff to the dry season in Darwin with the first On Country day of 2023.

MJD Foundation

1 month 4 days ago

Thank you so much to everyone who donated, supporting critically important MJD research. We’re about to close off the fundraiser, so if you or your

MJD Foundation

1 month 1 week ago

We are proud to launch our new Strategic Plan, "Future Way 2022-2027". Our overarching strategic goals will continue to focus our efforts and strengthen our

MJD Foundation

1 month 1 week ago

We have a wonderful opportunity as our MJD House (Respite) Coordinator in Darwin. This is a part-time role and the hours are flexible (e.g. across

Become a Supporter

Make a one-off donation or become a regular monthly supporter. As the MJD Foundation is an endorsed Deductible Gift Recipient, all donations over $2 are tax deductible.

Find out more about MJD Foundation Programs

My name is Gayangwa Lalara and this is my community.

I am a Warnindilyakwa woman.

Names are important to Aboriginal people.

Aboriginal people have names for everything, because it is important to identify and understand.

When this sickness came to our community many years ago, we didn’t know its name or what it was or how to stop it.

We didn’t know how to care for our sick people.

This sickness did not respect my family and took away 2 of my sisters and a 2 of my brothers. I have, for 15 years, cared for 2 of my sister’s children, and now I see younger ones in my family are sick. My 14-year-old niece is now in a wheelchair.

No one was interested in helping my people, especially my family, because their needs were so great.

I felt shame and we blamed ourselves.

I now know the disease has a name  Machado-Joseph Disease (MJD).

Knowing the name of this disease has not stopped it affecting my family and others, but has helped us understand it a little better, and now people are helping.

We have wheelchairs and ramps in many of our homes, and our community has built this aged care centre. Here, those with a disability and those who care are given respite. When people finish up, they don’t have to be in Darwin and away from their country and family. They are supported when they die here in Angurugu.

But we don’t want our people to suffer from MJD and die unnecessarily.

I am pleased people now see the problem and want to help my people who are suffering and find out how to help those who have the disease and those who will get the sickness in the future.

I am pleased that there is help from not only inside my community but people from the outside, even from overseas.

I don’t feel shame and we don’t blame ourselves anymore.

I feel proud to be part of a mob of people trying to make a difference for my people.

Before we didn’t know what this disease was, we struggled to care, there was no hope for the future and we felt shame.

Now we know what the disease is, it is a little easier to care  there is hope for the future.

And we are proud in our care, and in fighting this disease, and proud of the MJD Foundation.

We not only know the name of the disease, but we know the names of all the people who are joining with aboriginal people to make a difference for those with MJD, those who care for them.

Libby Morgan grew up on this island, and she wanted to do something to help those with MJD. She has worked from the start on setting up this Foundation.

She has done so much and left her family to come back here to help us.

To Libby, and all those people who have and are helping us, we say: