It started with a story all too familiar… One receives diagnosis, one tries to understand the condition, one reaches out for support and understanding—but struggles to find people who know about DCC’s let alone live with it!
For years the only support that Australians could find was a group in the USA, an email group of other parents from around the world. The problem was the medical and education systems in the two countries were vastly different and trying to find answers for things happening in our own country and support from others near by was hard. Those who were lucky found others in their community but most struggled on alone, trying to help their DCCer and get others to understand something they themselves struggled to understand.
Through the US listserver, one mum tried to get Australians together in our own forum but it was still hard to find others close by and getting the word out was difficult and many were still searching and not finding answers. It all came together with facebook. One mum started an Australian ACC facebook group and went through all the groups she could find to get as many Australians as she could to join her new group. Through this connection a group of parents took the leap to organise a committee with the hope of starting the first Australian non-profit DCC support organisation.
We are a new organisation formed in 2012. We have all found that there was very little information on DCCs within Australia. Until recently DCC’s have been largely unrecognised and underdiagnosed in Australia but with advances in imaging technology they are now being diagnosed earlier and sometimes even prior to birth. Some adults are also discovering that they have a DCC and this diagnosis is providing an explanation and understanding of many of their lifelong difﬁculties. Australian medical and educational professionals have had little or no experience with individuals with a DCC. We are hoping to expand the knowledge and support for all Australians diagnosed with a DCC and their caregivers.
Some goals for the future of ausDoCC ;
- Recognition as a Health Promotion Charity and the Tax Deductible Gift endorsement,
- Regular meet and greets for individuals, families and carers,
- Printable handouts and educational materials,
- The first Australian ausDoCC Conference—complete with speakers from research and medical fields, service providers and of course individuals and families affected by a disorder of the corpus callosum.
- Media and social media campaigns to raise awareness