How we can help
The ALDS recognises that managing a leukodystrophy is not just about the clinical side of things. There are a lot of other considerations, including the need for understanding, support, family counselling, financial considerations and many more.
What we provide
- Professional counselling, encouragement and support for families and individuals
- Connecting people directly with another family or individual affected by a similar condition can be a very rewarding experience, for both sides
- Equipment loans provided to families and individuals in need, free of charge
- Financial support to help juggle life, illness, work and finances
- Medical research support and information
- Resources including books, articles, stories, newsletters and other sources of information
- Information about the types of leukodystrophy
- Help to obtain genetic counselling see our Family Information Kit for more information
- Help to access support services from government and non-government see our Family Information Kit for more information. Families will also be given help to access support services and genetic counselling when they are contacted by our family advocate and counsellors.
Our family advocate is responsible for supporting members Australia-wide who are in immediate and ongoing crisis associated with a Leukodystrophy and for ensuring individual and family needs are being met by local Case Management and extended services in a timely and effective manner and that families are treated with respect and dignity.
Family Information Kit
Our Family Information Kit is a resource for families with a recent diagnosis to help guide them through the difficult task of understanding leukodystrophy and the unique terminology associated with it. The kit offers guidance on the help available through government and support agencies.
Toys & Equipment
ALDS is extremely grateful to the Brian Kirby Foundation for a donation of funds to be used to assist people whose vision is affected as a result of their leukodystrophy/leukoenephalopthy.
To date, we have been able to assist several people with the purchase of items of equipment such as i-Pads, new glasses and sensory toys, and also with payment for relevant services, such as allied health assessments.
We have also used some of the funding to set up a ‘share library’ of toys and equipment, rather like the toy libraries that you might have locally. We have purchased puppets, musical games and other items that people might use for a period and then no longer require. Once they are no longer needed, the items can be returned to ALDS and loaned out to someone else.
Through the generosity of the Foundation, we still have the capacity to provide further assistance, so please contact Bronwyn at the ADLS office, or our Family Advocate Pam Joseph on 0418 79 00 59, if you would like to talk further about how we can help.
We would also love more people to enjoy the items in our ‘library’, and will soon be putting a list of the available items on our website (www.alds.org.au/how-we-can-help/equipment-loans).
This toy library is free to all our members and available now.