The Journey to Remission – Liyandra’s Story
When Laura Ferrie talks about Liyandra, she doesn’t begin with cancer. She talks about laughter. She describes a woman with a mischievous sense of humour who enjoys making people smile, someone who loves spending time with her husband Justin and their four sons, and who approaches life with a quiet determination that has carried her […]
Home Is More Than a Place – Bakala’s Story
Connection to Country. Kin Connect. Staying Stronger for Longer. The MJD Foundation often speaks about helping people living with Machado-Joseph Disease stay stronger for longer. At first glance, it sounds like a philosophy centred on physical strength. In reality, it means something much bigger. Exercise, therapy and good medical care all play an important role […]
Listen Slowly – While I Still Have a Voice
When Anna Lalara talks about the future, she doesn’t begin with herself. She begins with her children. Her eldest daughter is sixteen. Her sons are seven and five. Like every mother, she imagines the lives they might lead, the places they will go and the people they will become. She wants them to grow up […]
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 […]
Luke’s Return to Country
Luke’s Return to Country For Luke, a proud Yolŋu man living with Machado-Joseph Disease (MJD), returning to Country was more than a trip. It was a chance to be back where he belongs. Luke currently lives in Supported Independent Living, away from his home in Galiwinku. As his condition has progressed, his care needs have […]
The One Arm Bandit – Ernie Nanjirrila Lalara
Remembering Ernie Nanjirrila Lalara 12th September 1947 — 2002 (55 years) Story by Bryan Massey When Kathy and I, and our eldest child, Libby, went to Groote Eylandt for the first time to live there in the early 1970s, Libby was only a very young girl of about 14-months old. At this time, all of […]
Carers – a journey through love, strength and struggle
Carers – a journey through love, strength and struggle ‘Love never ends’ – Story by Jenny Baird The story told in these pages ranges from the humble beginnings of a few people struggling to deal with a debilitating illness on Groote Eylandt, through to the founding of an internationally recognised organisation leading the way in […]
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.
Connect and Collaborate: Registrations Open for the Landmark 2025 International MJD Foundation Conference in Darwin!
Exciting news for health practitioners, researchers, policymakers, and community members in Darwin! Registrations are now open for the 2025 International MJD Foundation Conference, set to take place from 6-9 May 2025 in Darwin. The MJD Foundation (Australia) proudly invites participants to our third international conference dedicated to Machado-Joseph Disease and other hereditary ataxias. After the […]
Ngeniyerriya – The Story of Machado – Joseph Disease on Groote Eylandt
Both sisters, Rose and Roseanne, stayed with me. I didn’t want other families to help the wrong way. Nieces and nephews, brothers and sisters — I helped them all.’