History and Organisation
The Australian Leukodystrophy Support Group Inc. (ALDS) is a voluntary, non-profit organisation.
The organisation was founded in August 1992 by
Sr. Julie Thomas, (a sufferer herself) with the aim of providing information
and support to patients and families affected by this debilitating group
of genetic diseases.
Sr. Julie was awarded an Order of Australia Medal in January 2001 in recognition of her service to the organisation.
Today, the ALDS is still run by a strong volunteer committee (drawn from parents and supporters) with representatives from five States; Victoria, Queensland, New South Wales, South Australia and Western Australia.
Every year, despite putting in many applications, we only receive minimal government support for ‘current expenses’ in running the office. The lack of funding is simply because Leukodystrophy by its nature only affects a very small percentage of the population and the Government has other health funding priorities. We rely on financial members and donations to fund our work to support people affected by leukodystrophy.
The ALDS is a not for profit organisation and so we are recognised by the Australian Government as a charity for tax deduction purposes. All donations above A$2.00 are tax deductible.