Connecting people
Connecting directly with a family or another person with a similar condition can be a very rewarding experience, for both sides. Share experiences, help others understand, learn more about your condition. You are not alone.
“We felt like brothers”
Two adult Leukodystrophy suffers contacted us at the ALDS. Both were from different States in Australia, but they both had the same type of Leukodystrophy. After some brief formalities were conducted to allow us the necessary permission to pass on their contact information, they phoned each other and spoke at length. Their feedback to us that they came away feeling ‘like brothers’ because their experiences were so closely shared and it was so meaningful to speak to someone who really understood. A simple act – a worthwhile outcome.
“She helped prepare me for what was to come“
We also had a one of our member families’ mother make contact with us. She told us that her son was critically ill with a Leukodystrophy and she knew that he didn’t have very long to live. She asked us to link her with another mother who had faced this trauma and sadness. We linked her with a mother whose child had died of the same Leukodystrophy. They used email to contact each other and gave each other support by sharing their stories along with true empathy with each other. This contact helped prepare the mother for the future and it also helped the bereaved mother to share her experience by giving support to another person in a similar position.
Become a Member
Share the experiences and learnings with others is one of the benefits of becoming a member of the ALDS, become a member today.
Everyone’s needs are very different and there are many different types of Leukodystrophy.
We’ll listen to you first to work out what you may need, then we’ll let you know the possible options you can choose to follow.
Dependent on your needs and circumstances, we may be able to link you to a family therapist free of charge, or we may link you to a person dealing with a similar situation or similar Leukodystrophy.
It may also be appropriate to link you to a helpful organisation such as Genetic Services Network of Victoria, Association for Families of Children with a Disability, Carers Association, Very Special Kids (Victoria), or Bear Cottage (NSW).
Discover our stories
A published book of personal stories is available, which many have found to be comforting and useful. For a copy, please contact us.
Get connected
If you would like to link with another person or family. Due to privacy, we will need to get your permission to pass on your contact details, but that’s all it takes. Please contact us.
Events where you can meet
The ALDS also holds regular social events for affected families to meet each other in an environment where ‘people understand and know what it is like’. During the past two years these events have been held in Melbourne, Sydney, Brisbane and Adelaide. Please view our news for any events
