Leukodystrophy Australia (formerly the Australian Leukodystrophy Support Group) was established in 1992 by Sr Julie Thomas OAM as a not-for-profit charitable organisation, and has since grown to be an Australia-wide group run by a dedicated team of Volunteers, together with an Office Manager and a Family Advocate (Social Worker).
The organisation fills some very important needs, particularly in assisting individuals and families impacted by different types of leukodystrophy. There are times when needs are seemingly under control, whilst at other times, there are many issues where people benefit from the various ways the organisation can support them.
Leukodystrophy Australia is not a well-known charity, however, the services provided by the organsiation are extremely important. It is therefore that much more difficult to compete for the fundraising dollar.
Without the benefit of any government funding, Leukodystrophy Australia is very much dependent upon and appreciative of donations and grants (small and large) to keep the organisation going and to allow it to provide all-important supports to individuals and families and also to be able to support research into treatments and cures.
While Leukodystrophy Australia strives to reach and support as many individuals and families as possible, the reality is that a great deal more would be possible to be achieved if more funds were available. For example, we have one part-time Family Advocate covering the whole of Australia - this is an area where we could achieve so much more given more funds. Similarly, funding of respite, nursing care, equipment and services is easily exhausted with the limited funds currently available. This makes the funds we do receive so imperative.
Please look further in the menu under ABOUT for more of what the organisation does and also take a look at our ACKNOWLEDGEMENTS page.