Australian adults with a CCD
The Australian community of adults with a corpus callosum disorder (CCD) is scattered across the nation. Most do not live near another person with the same diagnosis. This causes isolation and difficulty accessing supports.
The first gathering of adults with a CCD in Australia took place in 2015 at the inaugural Connections conference, organised by the fledgeling support group, Australian Disorders of the Corpus Callosum (AusDoCC). That landmark conference brought people with a CCD, families, clinicians and international researchers together for the first time. Seven adults with CCD attended. For most it was their first time meeting another person with a CCD. It was a momentous occasion and a first step into new territory.
Since 2015, there have been annual opportunities for small groups of adults with a CCD to get together. However, the tyranny of distance makes this difficult. During the Covid19 global pandemic there were some virtual connections and there is a Facebook group but the nature of CCDs makes it vital for people to gather in person. They learn learn about their diagnosis, engage in workshops and enjoy social activities with peers. The understanding shared by a physical gathering of people with this rare brain disorder can never be replicated by virtual connections.
Many adults with a CCD are members of AusDoCC, the peak support body for CCD in Australia and NZ. Some have been elected to the volunteer Committee of Management which conducts all AusDoCC operations. Currently comprising almost 50% of the Committee, adults with a CCD are engaged at all stages of direction and support for children, teens, adults and their families.
