Welcome to Leukodystrophy Australia

Leukodystrophy Australia helps those living with leukodystrophy, through knowledge and support, to lead their best lives.

Sister Julie Thomas CSB OAM – 3 January 1940 – 6 February 2023

With great sadness, we announce that our dear founder, past President, life member, mentor, guiding light and great friend, Sister Julie Thomas CSB OAM, passed away on Monday 6 February 2023 after a sudden deterioration in her health over the previous weekend.

We know that many of our members were close to Julie are obviously deeply saddened – if you feel a need for support and to speak to someone, the Leukodystrophy Family Advocate/Social Worker, Jane O’Neill can be contacted at advocate@leuko.org.au or 0418790059.

Link to funeral service

 Supporting individuals & families impacted by Leukodystrophy

People diagnosed with Leukodystrophy, their families and carers, are on a life-long journey of largely the unknown.  In the main, there is no treatment or cure, diagnosis can be problematic and protracted, misdiagnosis happens.  Devastation for families is long, huge, and life changing. 

Recognition and funding into genomics, has seen numbers of our new contacts double in the past 6 months compared to the previous 12 months. 

We support our members, nationally, urban, rural and regional, with empowerment throughout their Leukodystrophy journey, from pre diagnosis and beyond. We offer support by fostering member connections, providing service linkages, education, advocacy, crisis support, promoting current trends in treatments and research. 

Our holistic approach improves well-being of the diagnosed person, families and carers, by empowering their decision making in life and health, across multiple stakeholders.  Friendship opportunities, majorly, and importantly, reduces the often overwhelming sense of isolation and anguish.  Leukodystrophy Australia offers time, comfort, practical support.

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Vision & Mission


Those living with leukodystrophy, through knowledge and support, lead their best lives.


We assist in empowering people throughout their Leukodystrophy journey and beyond. We offer support, foster member connections, provide service linkages, education, advocacy and promote current trends in treatments and research.

Partner Organisations

Leukodystrophy Australia works with peak organisations to keep abreast of the latest information. We partake in workshops, focus groups, conferences and seminars and advocate together with:

Leukodystrophy Australia is delighted to partner Humaniti, Australia’s first budgeting app where you can earn money doing surveys.

This is a great opportunity for you and your broader network to access a simple and helpful tool, earn some extra $$, and be able to raise much needed money for our families. 

Ben Dixon, the founder of Humaniti, has been associated with Leukodystrophy and the Charity Challenge events for over 15 years, and is very excited to be able to support us in this way. 

For every member who joins Humaniti and puts in the referral code LEUKO10, Humaniti will donate $10.00 to Leukodystrophy Australia. You also get $5.00 to kickstart your Humaniti account.

Please join Humaniti at www.humaniti.com or your App Store

Support the efforts of Leukodystrophy Australia

Leukodystrophy Australia is the national peak organisation representing all people impacted by Leukodystrophy. We share in the same vision to source a cure for Leukodystrophy worldwide. We collaborate internally and externally with numerous stakeholders to advance the care of our members.

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