MJD Foundation

For Liyandra, reaching remission meant more than treatment.

Living with Machado-Joseph Disease on Groote Eylandt, every appointment in Darwin brought another journey, another obstacle and another piece of the health system that had to fall into place.

Behind it all was Liyandra’s determination, the strength of her family, and people working quietly beside her to make sure nothing stood between her and the care she needed.

Today, Liyandra is in remission.

Read The Journey to Remission – Liyandra’s Story:

The Journey to Remission - Liyandra's Story | MJD Foundation 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....

This month's feature story, Home Is More Than a Place, shares Bakala's story and the extraordinary work that happens behind the scenes to make these journeys home possible.

It's a beautiful reminder that sometimes the most important medicine isn't found in a hospital or therapy room. Sometimes, it's simply being home.

Read Bakala's story on our website: https://mjd.org.au/home-is-more-than-a-place-bakalas-story/

Anna Lalara is living with Machado-Joseph Disease, a rare neurological condition that has affected her family for generations. But this isn't simply a story about illness. It's a story about love, courage and a mother's determination to use her voice while she still can.

Anna speaks openly about the questions many families quietly carry, including what the future may hold for her children and why every moment to advocate matters. Her message is simple, yet profoundly powerful: "Listen slowly."

Those two words remind us that although MJD may change the way a person speaks, it never changes who they are.

By sharing her story, Anna is helping Australians better understand the lived experience of MJD and why families need ongoing support, research and hope for the future.

We are deeply grateful to Anna and the Lalara family for their generosity in sharing such a personal journey.

Take a few moments to read Anna's story and, most importantly, to listen.
Read the full story here: https://mjd.org.au/listen-slowly-while-i-still-have-a-voice/

Because of you, moments like these are possible. ❤️A heartfelt thank you to every one of our incredible regular donors.

Your ongoing support helps make Kin Connect possible, giving Aboriginal people living with Machado-Joseph Disease (MJD) the chance to return home to Country, reconnect with family, spend time by the sea, hear their language, and share precious moments with the people they love.

These are more than just visits. They are moments of belonging, culture, joy and connection that mean the world to our families.

From all of us at the MJD Foundation, and from the families whose lives you touch, thank you for making these special days possible.

If you'd like to help more families reconnect with Country through our Kin Connect Program, we'd love to have you join our community of regular supporters.

Donate or become a regular giver here:
https://mjd.supporterhub.net.au/donations/kin-connect

Every gift helps bring someone home.

It all began when Mandaka Lalara was diagnosed with a mystery illness then known only as ‘Groote Eylandt Syndrome’. As more family members became afflicted, knowledge was gained regarding proper provision of care. Gradually, over many years, the community began to understand what MJD was, and then, via the MJD Foundation, there came funding and research.

Carers - a journey through love, strength and struggle | MJD Foundation 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 research and provision of care for people living with MJD.

This is a story about far more than a rare genetic disease. It's about love passed from one generation to the next, the strength of culture, the importance of Country, and the extraordinary resilience of Aboriginal families who continue to face the future with dignity, courage and hope.

We genuinely hope you'll take a few minutes to read this feature. If it moves you, please share it. The more Australians who understand Machado-Joseph Disease, the more hope there is that these remarkable families will never have to walk this journey alone.

Read the full story here:

A future written in DNA: families living with Machado-Joseph Disease | MJD Foundation 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 h...

The One Arm Bandit – Ernie Nanjirrila Lalara

Our new MJD History Series celebrates some of the remarkable people whose stories have shaped the MJD journey across northern Australia.

The latest story remembers Ernie Nanjirrila Lalara (1947–2002).

Ernie was known for his huge smile, his sense of humour and his determination. There was a standing joke in Angurugu that if you waved to Ernie while he was driving, he'd take his hand off the steering wheel to wave back. Another favourite story recalls Ernie nearly landing a large turtle on a fishing trip using just one arm, only for the turtle to escape and everyone on the boat to decide it was probably a "stinky one" anyway.

These are the stories that rarely make it into medical journals.

Stories of laughter, friendship, resilience and community.

Stories that remind us that behind every diagnosis is a person, a family and a life well lived.

Read Ernie's story and explore the MJD History Series on our website.

https://mjd.org.au/the-one-arm-bandit-ernie-nanjirrila-lalara-12th-september-1947-2002-55-years-by-bryan-massey/

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

Our newest feature story shares the powerful journey of families on Groote Eylandt living with Machado-Joseph Disease, and the strength, care and cultural leadership that shaped the MJD Foundation’s “Our Way” approach.

At the heart of the story is Gayangwa Lalara, a proud Warnindilyakwa woman whose family has carried this journey across generations.

This is a story about resilience, dignity, family and hope.

Read the full story on our website today. https://mjd.org.au/they-were-living-with-it-long-before-it-had-a-name-what-came-next-they-built-themselves/

Home | MJD Foundation The MJD Foundation supports families living with Machado-Joseph Disease and Spinocerebellar Ataxia Type 7 in Aboriginal & Torres Strait Islander communities.

🎯 This EOFY, your donation can help make a real difference in the lives of families living with Machado-Joseph Disease. ❤️

Your support helps us provide culturally safe, practical support for families and carers — including services delivered on Country wherever possible.

Your donation will also help fund:

✨ Education and resources that empower our clients with greater confidence and independence
✨ Clinical and community services designed around what matters most to families
✨ Research partnerships that create new knowledge and pathways to improved care

Every contribution helps us continue walking alongside families and communities with care, respect, and understanding.

To learn more or donate, click on the link below.



https://mjd.supporterhub.net.au/donations/tax-appeal2026?source=fb