History of AusDoCC

From Little Things Big Things Grow

I just wanted to let you know a little bit about the history of AusDoCC.

After reading a small article in our local paper about a little girl called Abbey and her Mum, Natasha Hrabar, I decided to call her. I remember the article was about a little girl who had some huge challenges and needed a lot of therapy. Then the words ‘partial agenesis of the corpus callosum’ jumped off the page at me! Having two ACCers myself I immediately thought, “I need to talk to this woman!” Thankfully she didn’t think I was some kind of nut and became my Facebook friend.

From this I decided to start a Facebook group with our very first member being Natasha. It was originally Agenesis of the Corpus Callosum Australia, which slowly grew after I searched for Australian people off other Facebook sites.
Some of our first groupies included some of our committee members, Rebecca Walter and Maree Maxfield Kinniburgh as well as Mel Smith, Kylie Sallis and Dingo and Tristelles Pack.

We shared stories and swapped info about our kids. Then we had a mother-to-be join, who was frantic for answers about her unborn baby. This was the lovely Pieta Harris. Pieta had a vision for the group and from this our committee was formed and AusDoCC was created.
We started from very humble beginnings to websites, YouTube accounts and talk of ambassadors. I find this amazing!
Kristina Coburn – Perth

It began 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.

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:

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.
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

UPDATE: May 2017. The 2015 goals have been achieved or are ongoing. New goals:

growing the adults’ support group to initiate an adults with DCC conference
planning conferences for 2019 and 2021 in capital cities
writing a picture story book about an Australian character with a DCC
planning coordinated, regular meet ups in every state
improving and maintaining our website to be a valuable source of information
producing a best practices document
producing quarterly newsletters with a new theme and increased content
recognising our first patron of AusDoCC
producing information kits for teachers and health professionals
finding champion businesses and individuals to financially help AusDoCC to achieve some aims
training volunteer committee members to assist members and effectively grow the organisation
advocating for greater awareness of DCC in health and political communities
raising funds to assist with research to find causes of ACC and best management practices for families and individuals
to ROAR for AusDoCC members to gain Recognition, Opportunities, Access and Resources

UPDATE: July 2019. The 2017 goals have been achieved or are ongoing. New goals:

having future conferences for adults with DCC after the successful inaugural conference in 2018
continuing to offer major conferences to cater for kids and adults with a DCC and their professionals, families and friends.
growing our funds to facilitate more effective operations and resources
continuing to embed our mascot, Edna the fat tailed dunnart, in our events and identity. Completing the picture story book and including her in all newsletters
establishing funded meetups in each state
initiating DCC further information days in capital cities
developing a new website to reflect the changing knowledge base and broader offerings from AusDoCC
advocating to government bodies to gain better recognition for DCC, as a key diagnosis
increasing international collaboration with the global science/research community
increasing international collaboration with other national DCC support groups
continuing the quarterly newsletter and growing the scope of content and distribution
initiating a Friends of AusDoCC group to build our supporters and volunteers who wish to assist with events and operations
finding champion businesses and individuals to financially help AusDoCC to achieve some aims
offering peer support training for carers and having a pool of people to support newly diagnosed families/individuals
finalising our new information resources for professionals, individuals, families and friends and distributing them
developing a new membership welcome pack and introducing meetup kits
sending birthday cards to everyone with a DCC
building the capacity of health and educational professionals with tools and information
implementing administration and operations training for committee members to improve efficiency and build knowledge to effectively operate AusDoCC as a vibrant, meaningful organisation.
actively strengthening the profile of AusDoCC and corpus callosum disorders