It started with a story all too familiar…
One receives a diagnosis, one tries to understand the condition, one reaches out for support and understanding but… struggles to find people who even know about disorders of the corpus callosum (DCC), let alone live with one!
For many years, the only support that Australians could find was a group in the USA, the ACC Listserv. That was an email group made up of other parents from around the world. This was a wonderful initial discovery but the problem was that the medical and education systems in the two countries were vastly different. Trying to find answers in our own country and support from others nearby, was hard. A lucky few found others in their communities but most struggled on alone, trying to help their child or adult with a DCC and to get others to understand something that they, themselves, struggled to understand.
Through the US Listserv, one mum tried to get Australians together in our own country but it was still hard to find people and getting the word out was difficult. Many were still searching and not finding answers. It all came together with Facebook. A Perth mother of two boys with a DCC started an Australian Facebook group in 2010 and trawled through many other groups to find Australians with a DCC connection, to join her new Facebook ACC group. Through this connection, a Melbourne mum took the leap to organise a committee and AusDoCC was born on April 11, 2012, when the first official meeting was held by Skype. Nine excited mothers spoke together for the first time, beginning the first Australian, non-profit, DCC support organisation.
We all found that there was very little information on DCC within Australia and until recently, DCC have been largely unrecognised and underdiagnosed here. With advances in imaging technology they are now being diagnosed very early in life and often 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. Most 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 at the beginning of AusDoCC were:
- Recognition as a Health Promotion Charity and the Tax Deductible Gift endorsement (DGR)
- 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
UPDATE: Dec, 2015. We are excited to say that all those goals have been achieved.
Future goals are to:
- celebrate an annual corpus callosum awareness day on July 2,
- hold conferences in a different capital city every 2 years
- organise family meetups and information seminars
- raise our profile and the community awareness of disorders of the corpus callosum.
- publish some resource materials for teachers and families
- grow the adults’ support group
- gather a consortium of professional research, educational and medical advisors.
- gain financial support to provide quality materials and world class speakers at conferences