Financial support

For families and individuals affected by leukodystrophy, it’s not always easy to juggle life, illness, work and finances. The ALDS has a small amount of resources set aside specifically to provide financial assistance to these people when it is needed.

In recent years, the ALDS has provided financial support to many families in need.

We provide money to families for ongoing or one-off costs (such as travel expenses for doctors’ appointments, medications, household bills, medical bills, and so on). We have received grants for specific requests (such as a specialised head rest) and have recently assisted with a bathroom renovation to help a family care for a child with a leukodystrophy.

Over the years, the ALDS has also helped five people travel overseas to attend international conferences on leukodystrophy, such as the United Leukodystrophy Foundation (ULF) Conference. This is because one of our key aims is to be an information source for those affected by, or interested in, the range of leukodystrophies. When they return home, those who attend the conferences share what they have learned. They also maintain contact with the people they met while overseas to discuss developments in treatment and research. These growing networks help strengthen our resources and knowledge.