They were living with it long before it had a name. What came next, they built themselves

On Groote Eylandt, long before the disease had a name, families were already living with its effects. People began to notice the changes slowly. A stumble. A shift in balance. Words becoming harder to form. Over time, walking, speaking and swallowing all became more difficult.

No one could explain why it was happening. No one knew how to stop it.

“My name is Gayangwa Lalara,” she says. “This is my community.”

Gayangwa is a Warnindilyakwa woman. She is 80 years old. Machado-Joseph Disease has been part of her life for as long as she can remember.

“Names are important to Aboriginal people,” she says. “We have names for everything, because it is important to identify and understand.”

But when this sickness first came, there was no name. “We didn’t know what it was. We didn’t know how to care for our sick people.”

The disease moved through her family over time, not in one moment, but across years. Her father developed it when he was older. All six of her brothers and sisters from one of her two mothers were affected by their forties. She buried two sisters and two brothers. For more than 15 years, she cared for two of her sisters’ children. Now, she watches it unfold again.

“My niece was 21 when she passed away,” she says. “Now I see younger ones in my family getting sick.”

This is how the disease works. It is inherited. It moves through families, generation by generation. It does not arrive suddenly. It stays. For a long time, families like Gayangwa’s were left to carry it on their own.

There were few services. Little understanding. Care fell to families already stretched. People were sent away from their communities when their needs became too great. Some died far from home. Others remained without the support they needed.

“No one was interested in helping my people,” Gayangwa says. “Their needs were so great.”

In that absence, something else took hold. “We felt shame,” she says. “And we blamed ourselves.”

It was not a cure that changed things first. It was a name. Machado-Joseph Disease.

Understanding the disease did not stop it. But it shifted something fundamental. “Knowing the name, it helped us understand a little better,” Gayangwa says. “And now people are helping.”

That change did not come from outside alone. It came from families pushing for something different.

For the Director of Research, Education and Clinical Services at the Machado-Joseph Disease Foundation, Libby Massey, who has been living and working alongside families in remote communities for decades, the gap was clear. “There was a real gap between what families were dealing with and what the system was set up to provide,” she says.

People were living with something long-term, complex, and deeply connected to family and culture. The responses available did not fit.

“We had to engage them and ask them.” Libby reflected.

From that point, things began to shift.

The MJD Foundation was established in 2008, shaped by the voices of families who had lived with the disease for decades. Its approach would come to be known as “Our Way”. It is not built around individuals alone, or short-term interventions. It is built around families, over time.

“It’s about walking alongside people for the long term,” says Jacquie Hatt, CEO of the MJD Foundation. “Understanding what matters across a lifetime.”

“Our Way” is not easily reduced to a single program. It brings together clinical care and cultural knowledge, shaped by the people it supports. At its centre is a two-way approach, Aboriginal community workers, often from affected families, working alongside health professionals, with knowledge moving both ways.

Care is not confined to clinics. It happens in homes, in communities, and on Country. Therapy might take place through everyday activities. Support extends beyond physical health to include transport, equipment, housing, and social and emotional wellbeing.

“It’s holistic because it needs to be,” Jacquie says. “MJD affects every part of a person’s life.”

For Jacquie and Libby, the consistency of that approach matters. “Everything we do is grounded in what families tell us they need,” Jacquie says.

And for Gayangwa, the changes are practical, but also deeply personal.

“We have wheelchairs now,” she says. “We have ramps in our homes.”

Just as important is what has shifted within families. “I don’t feel shame anymore,” she says. “We don’t blame ourselves anymore.”

Jenny Macklin, Chair of the MJD Foundation and former federal minister, first encountered the issue during visits to Groote Eylandt while in government. “What stood out was the scale of the impact on families,” she says. “And the lack of services that truly matched what was needed.”

Over time, she saw something else emerge. “This is a model that has grown from the experience of families themselves,” she says. “It reflects the reality that this is a lifelong, multigenerational condition.”

She believes the lessons extend beyond Machado-Joseph Disease. “It shows what is possible when services are shaped around people’s lives, not the other way around.”

The disease has not stopped. Across northern Australia, hundreds of people are now known to be at risk. In many families, the next generation is already showing signs.

For Gayangwa, the future is not something distant. “I don’t want my grandchildren to go through this without support,” she says.

The model that now exists has been built over decades, shaped by families who refused to accept that nothing could be done. But, like many things in remote Australia, it requires continued support to remain strong.

For years, part of the Foundation’s work in north-east Arnhem Land has been supported by funding linked to mining operations on Groote Eylandt. As the mine moves toward closure, that long-standing support will come to an end.

At the same time, more families are being diagnosed. More people are living longer with the disease. The need is not slowing. It is growing.

There is still no cure for Machado-Joseph Disease. But there is now a way of caring for people, one built by families, grounded in culture, and carried over generations. What began as a response to absence and misunderstanding has become something defined by strength and clarity. The MJD Foundation calls it “Our Way”, but its origins sit with the families who lived it, who asked to be heard, and who shaped what care should look like in their own communities.

“We are proud in our care,” Gayangwa says.

“And we are proud of the MJD Foundation.”

Story by Tom Hearn

You can donate to the Foundation here

The MJD Foundation services on Groote Eylandt are proudly supported by Anindilyakwa Land Council, South32 and Groote Eylandt Aboriginal Land Trust.