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. 

Gayangwa’s Story

Gayangwa is a Warnindilyakwa woman of Groote Eylandt. She is 80 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.

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MJD Foundation is with Northern Territory PHN and 3 others.

2 weeks 2 days ago

The MJD Foundation would like to thank everyone involved in planning and delivery of the Men's Camp held this year at Groote Eylandt, where men

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3 weeks 1 day ago

A reminder that Early Bird Registration closes 13 of December 2024. For further information - 2025 MJD Foundation Conference aapevents.eventsair.com/2025mjdfconference/

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3 weeks 2 days ago

Call for Papers/Abstracts – International Conference closes 10 December 2024. For further information - 2025 MJD Foundation Conference aapevents.eventsair.com/2025mjdfconference/

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1 month 6 days ago

The MJD Foundation would like to congratulate our very own Libby Massey for the first journal article from the PhD research she has been doing

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1 month 1 week ago

In you are interested in our work and would like to donate to support the important work of the Foundation, then make a one-off donation

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1 month 1 week ago

On International Ataxia Day, the MJD Foundation would like to acknowledge the work of the staff, volunteers, individuals living with MJD and their families and

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1 month 2 weeks ago

The MJD Foundation provides specialist clinical services including: Genetic Care – providing culturally safe genetic education and counselling so that families better understand how MJD

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1 month 2 weeks ago

We believe that our clients and families receive better support if people in their lives understand more about MJD and SCA7, and are confident, capable

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1 month 2 weeks ago

Did you know that the MJD Foundation is one of five international Centres of Excellence under the National Ataxia Centre of Excellence program. This program

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1 month 2 weeks ago

We are currently reshaping our Executive Team by recruiting a Director of Finance & Operations (leading our Shared Support Services) and a Director of Community

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1 month 2 weeks ago

In the days leading up to the International Ataxia Day on Wednesday the 25th of September, the MJD Foundation will be sharing the work we

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1 month 2 weeks ago

Conference organisers are calling for Papers, closing the 15th of December, please contact us if you have any questions. For further information - 2025 MJD

MJD Foundation

1 month 2 weeks ago

Early Bird Registration for the Conference is now open, get in quickly as they close on the 13th of December 2024! For more information -

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1 month 4 weeks ago

Are you a strong leader with a clinical background? Are you passionate about providing the best Community Services for our clients working 'Our Way'; in

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3 months 3 weeks ago

Over the past 8 years, Walk for a Cure has raised over $60,000, with $12,524 raised this year alone! Fundraising leaders, 'Drop it like a

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3 months 4 weeks ago

Along with the wider Groote Eylandt community, the MJD Foundation is mourning the recent loss of Mr T Wurramarrba. Mr Wurramarrba was a founding member

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4 months 5 days ago

We are seeking the donation of a Fridge/Freezer in good, clean condition for one of our clients based in Darwin. If you can help out,

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4 months 2 weeks ago

Please support our EOFY Appeal, raising funds to support our clients/families living with MJD and SCA7. We thank everyone associated with our fundraising activities, and

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4 months 3 weeks ago

We are seeking an experienced Executive Assistant to support our CEO. This position is a trusted and critical member of our team who efficiently and

MJD Foundation

5 months 4 days ago

We are very proud to be celebrating MABO DAY as a public holiday, replacing Australia Day (26th Jan). Always was, always will be Aboriginal Land.

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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:

THANK YOU

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