About Us

Professional Testimonials

Dr Chloe Stutterd, Clinical Geneticist – Victorian Clinical Genetics Service

The services provided by Leukodystrophy Australia are crucial to supporting individuals affected by leukodystrophy. There are many different types of leukodystrophies, each is rare and most cause progressive disease. As a result, individuals and families affected by leukodystrophy can feel isolated and worry that others do not understand their needs. Affected individuals and their families can face significant stress managing severe and chronic health issues along with the associated emotional, financial and social pressures. Currently, the medical management of these conditions is advancing at an unprecedented rate which can generate confusion and uncertainty within the community. Leukodystrophy Australia helps individuals and families to connect with each other and with supportive resources and to access accurate medical information. This service supports and empowers individuals and their families to live successfully with their condition.

Leukodystrophy Australia is committed to providing a sustainable support service that can grow and evolve as needed to meet the substantial and changing needs of this patient group.
Dr Chloe Stutterd
Clinical Geneticist
Victorian Clinical Genetics Service

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Robbie Avenaim – Director, Safe in Sound

Leukodystrophy Australia assisted launching the Safe in Sounds concert series back in 2018. Their endless support, assisting SIS to liaise with their families across Australia has shown their commitment and open mindedness they have to both the disability and arts sectors..

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Individual Testimonials


I have been wanting to send you couple of photo’s of my kids with St George Foundation funding you previously helped us with…

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Cincotta Family

Without Leukodystrophy Australia, I fear she would have spiralled into depression and closed herself off from the world to suffer this degenerative genetic condition on her own.

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Enza Diletosso

We know ALDS will assist in pointing us in the right direction for funding or be able to acquire funding for children such as Alessio.

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Josh Yates

I’m very grateful to the A.L.D.S for their continuing support. It has helped a lot knowing people who understand what people with A.L.D and their families go through.

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Leanne Longfellow

We have also benefited from the ALDS by networking opportunities with other families, financial support & the ability to borrow equipment from the ALDS equipment pool.

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M Cassimaty

As an AMN sufferer I have found ALDS to be very supportive over the years and very active in providing information on my and other similar conditions…

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Mark Trendle

I would like to express my appreciation of the Australian Leukodystrophy Support Group in its ongoing support of sufferers of the disease.

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Peter Phillips

The personal nature of the support offered by the ALDS is something we really appreciated and is an aspect of the support group that quite unique.

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Quinsey Family

As a family we would like to thank Australian Leukodystrophy Support Group for all their support emotionally, financially over the years.

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Smith Family

Without ALDS we would not know what we know today about Leukodystrophy and we would feel a lot more lost than we do nowadays.

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