A future written in DNA: families living with Machado-Joseph Disease
In communities across northern Australia, some families already know what their future may hold. They have watched it happen to parents, brothers, sisters, and now, their children. The first signs are subtle: a stumble, slurred words, fatigue. Over time, walking becomes difficult. Speaking becomes harder. Independence slowly slips away. Eventually, people living with Machado-Joseph Disease lose voluntary muscle control and become fully dependent on others for daily care. There is no cure.
Machado-Joseph Disease, or MJD, is a hereditary neurological condition. Each child of someone with the disease has a 50 per cent chance of inheriting it. With each generation, symptoms often appear earlier and progress more aggressively. For many Aboriginal families across Arnhem Land, Groote Eylandt and the Top End, the disease has shaped life for decades.
Yet outside these communities, few Australians have heard of it.
For Gayangwa Lalara OAM, Vice Chairperson of the MJD Foundation and a Warnindilyakwa woman from Groote Eylandt, the disease has been part of her life for decades. She has seen it move through her family across generations, shaping how families understand and respond to it over time.
“We’ve seen this disease in our families for a long time,” she says. “Now we speak openly about it, and we stand strong for our people.”
Her journey from silence to advocacy reflects the experience of many families who lived with confusion and stigma before understanding the genetic nature of the disease.
MJD affects far more than physical health. As mobility declines, people lose the ability to work, hunt, travel, participate in ceremony and fulfil their roles within family and community. Their failing bodies mean that they lose their ability to care for each other. For many, leaving Country becomes unavoidable as care needs increase. But the pull of home remains strong.
For Luke, a proud Yolŋu man living with MJD, the chance to return to his Country was more than just a trip. It was a reconnection to identity, culture and spirit.
Now living in supported accommodation, Luke recently travelled back to Galiwinku. While on Country, he attended a traditional bungul ceremony, surrounded by family, song and movement passed down through generations. He later travelled to Gawa homeland, gathered bush tucker with relatives, and shared knowledge about land and sea.
“It made me feel strong again,” Luke said. “Being on Country, with family, with culture, that’s where I belong.”
Support workers helped make the journey safe and accessible, enabling Luke to take part in ceremonies, spend time on the land and reconnect with the gurrutu system that shapes Yolŋu life. When he returned, he carried more than memories. He brought back joy, strength and renewed identity.
Julie Gungunbuy Wunungmurra, a Yolŋu woman from Galiwin’ku and Director of the MJD Foundation and Cultural Advisor, is also living with the disease herself. Machado-Joseph Disease has shaped her life for as long as she can remember, affecting family members across generations.
“We’ve grown up with this disease. We’ve seen our families go through it, and now some of us are living with it ourselves,” Julie says. “But we’re not giving up. We want people to understand what MJD is, and we want our families to stay strong, connected to culture, and supported for as long as possible.”
For Julie, raising awareness is also about dignity.
“When people understand the disease, there is less shame and more support. That makes a big difference for our families.”
The MJD Foundation has built its work around this understanding, supporting families to “stay stronger for longer” through therapy programs, equipment, transport, and kin connection trips that allow people to return home even when they can no longer live independently.
CEO Jacquie Hatt says the organisation’s approach is grounded in what families say matters most.
“MJD affects every part of a person’s life, not just physically but socially, emotionally and culturally,” she says. “Our work is about supporting people to stay connected to their roles, their families and their Country for as long as possible. That connection is critical to wellbeing.”
While awareness is improving, demand is primarily growing because MJD is hereditary. More families are seeking assistance and displaying symptoms earlier, and people in remote communities require increasing support where services are already scarce.
Jenny Macklin, Chair of the MJD Foundation, says Australia has an opportunity to respond.
“This is a devastating, inherited disease affecting Aboriginal families across northern Australia, yet many Australians have never heard of it,” she says. “The leadership shown by families, communities and clinicians is extraordinary. With greater awareness and support, we can improve the quality of life and outcomes for future generations.”
For many years, part of the Foundation’s work in Arnhem Land has been supported by funding linked to mining operations on Groote Eylandt. With the mine closing in coming years, that long-standing support is coming to an end, just as more families are being diagnosed and the need for care continues to grow.
The moment is creating both uncertainty and opportunity. The Foundation is now seeking new partners, philanthropic supporters and national collaborators to help ensure families living with MJD continue to receive the culturally grounded care and support they rely on.
For Gayangwa Lalara, the urgency is deeply personal.
“I don’t want my grandchildren to go through this without support,” she says. “We need people to understand this disease. We need partners to stand with us. This is about dignity, culture and giving our families the best life possible.”
Machado-Joseph Disease may be rare, but for the families living with it, its impact is lifelong. Their stories are not only about loss, but resilience, connection and determination. It is both a story and a cause, and one Australia can no longer afford to overlook.
Story by Tom Hearn
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