Support Us


Lauren and Ryder Edwards

The essence of our organisation is members. By working with our members, Leukodystrophy Australia works to achieve goals that benefit all people living with Leukodystrophy. We do this via our focus in supporting individuals and families to live their best lives. For our awareness raising and our grant submissions to government and private benefactors, our ‘memberships’, and our ‘members lived experience’ is vital. It is imperative we continue to show strong Membership. Please join or ensure your continued Membership by filling out the below form.

Membership Form


JULY 1, 2023 – JUNE 30, 2024



Why should I join?

Members can, should they wish, be involved in formal decision-making through voting and discussions during annual and special general meetings. Members can be elected, appointed or nominated to the Committee. Social support is also provided to members.


Am I eligible to become a member?

The answer is yes, if you support the purpose of ‘providing information, support and advocacy to individuals and families affected by leukodystrophy, raising awareness of its impacts and encouraging research into Leukodystrophy.


What is the annual membership renewal process like?

A renewal form must be submitted annually. If not received, you will be deemed to have resigned.


Do I have to pay the Membership Annual Subscription fee?

No, if you or someone in your family has been diagnosed with a leukodystrophy or you are a Leukodystrophy bereaved family. Memberships fees and subscriptions are not tax-deductible. However, donations to Leukodystrophy Australia over $2.00 are tax-deductible. A receipt for tax purposes will be emailed to you.


Are personal details of membership kept confidential?

Under legislation, Leukodystrophy Australia may be required to give a person access to inspect the membership register, but not permitted to use information, contact, send materials or disclose information about another person, unless directly related to the management or purposes of Leukodystrophy Australia and not prohibited by the Leukodystrophy Australia Rules.

For further information about legislation, Leukodystrophy Australia Rules and to restrict access to your personal details due to special circumstances, please contact the Secretary, Susan Stenning (details below) or seek advice from the Victorian Office of Consumer Affairs: or the Australian Charities & Not for Profit Commission

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