We ROAR for all people with a disorder of the corpus callosum –
Recognition, Opportunities, Access and Resources
*******
Current
April 11 – Happy 10th birthday AusDoCC
We are proud of all our achievements as a 100% volunteer operated organisation.
Celebrations will continue throughout the year.
Please make donations here
*****
Current Corpus Callosum Research Projects
————
Quality of Life for adults with a corpus callosum disorder (CCD)
Are you an adult with a CCD or do you know one? The study is part of a larger project to explore quality of life for Australian adults with a CCD and to find the most effective way for the community to communicate their needs to decision-makers. CCDs are still largely unrecognised and poorly managed in the adult community.
Click here to take the online survey.
Click here to learn more about the research project with adults.
Click here to contact lead researcher – Maree Maxfield
University of Melbourne | Melbourne School of Population and Global Health | Centre for Health Equity
*****
Receiving an ACC Diagnosis in Utero
The research study aims to explore the lived experiences of mothers whose unborn baby has a diagnosis of agenesis of the corpus callosum (ACC). The results will help the people who have not had this experience, gain an understanding of the things the mothers move through. These people outside the maternal experience may be clinicians, researchers, support organisations, families or friends.
Click here to contact lead researcher – Pieta Shakes
Southern Cross University
*********
Longitudinal Study of Behavior and Development in Infants and Toddlers with ACC
This is the first study examining behavioral development in children with Agenesis / Dysgenesis of the Corpus Callosum (ACC) from birth into early childhood.
Our aim is to characterize/describe the behavior development of children with agenesis/dysgenesis of the corpus callosum. Ultimately, this understanding can be used to create more effective intervention techniques and supports for children and adults with ACC.
Click here to find out more about this study.
California Institute of Technology (Caltech)
******
Zoom chats with your peeps
Meet in person
2022
Melbourne, Perth, Brisbane, Adelaide, Sydney AusDoCC Family meetups.
Watch this space
Brisbane MeetUp – March 2022
Disorders of the Corpus Callosum Awareness Day 2022
Every year on July 2 we celebrate International Corpus Callosum Awareness Day.
We chose the middle day of the year to represent the corpus callosum in the middle of the brain.
****
Click here to meet Edna, the fat tailed dunnart.
*****
My People Conference, Brisbane, 2021
From 17-21 June 28 adults with a CCD gathered from all corners of the land at the second My People conference.
A highlight was visiting the Queensland Brain Institute where it is always a treat to catch up with our favourite researchers and friends.
*****
International corpus callosum community – say hello to our global friends
**********
Look and Listen
Click here to view Professor Linda Richards explaining corpus callosum disorders (CCD)
Click here to listen toThe Mysterious Corpus Callosum – All in the Mind, Radio National
Click here to see Australian adults with a CCD and parents talk about their experiences
Click here to view “That’s how I Am.” Australian kids and adults with a CCD talk about their experiences
AusDoCC Info Day 2020 – Click here to view Clare Keogh, an adult with ACC.
Click here to meet Karina from Brisbane, Qld. Karina has ACC and loves her bicycle, ballet and bouncing.
Click here to meet Georgie, Bill & Connor, 3 adults with a CCD
Click here to meet Georgie from Bathurst, NSW. Georgie has ACC and a black belt in karate. She also enjoys bungee jumping.
Click here to view more and subscribe to the AusDoCC YouTube channel, AusDoCC Videos.
Events
We are sorry to say that many face to face gatherings and events have been postponed until further notice. We will keep you updated as the state of the world becomes clearer. Meanwhile we are jumping onto ZOOM to plan activities online. We will keep you posted.
Stay safe everyone.
Contact AusDoCC info@ausdocc.org.au for more details and a registration link.
AusDoCC Meetups©
Latest News
****************
Education
Explaining ACC to your child’s teacher. click here for a helpful resource
**********************************
Resources
TEN TOP TIPS for DCC – covering life stages from pregnancy to adulthood
Governance
2021/22 AusDoCC Donors
AusDoCC is a 100% Volunteer operated Not For Profit (NFP) organisation. We rely on donations, fundraising and sporadic grants to operate. All Committee members donate their time, expertise and energy. Please donate to help us help all families and individuals connected by a disorder of the corpus callosum. We appreciate the generosity of all donors and particularly our major sponsors.
Click here to donate
Brain Sells Shop
Edna, our mascot, is a fat tailed dunnart and has no corpus callosum. Buy an Edna here
Visit the AusDoCC shop https://www.ausdocc.org.au/shop to buy caps, tatts and much much more
NEW in the shop – T shirts. 3 styles. 2 colours. 11 sizes.
********************************
AusDoCC Vision
To ROAR for
Recognition, Opportunities, Access and Resources
for everyone with a disorder of the corpus callosum.
About AusDoCC and DCC
What is a disorder of the corpus callosum?
The corpus callosum is the major connection between the two hemispheres of the brain. A disorder of the corpus callosum (DCC) occurs when the corpus callosum, the major connecting structure between the two hemispheres of the brain, is partially or fully absent at birth. Disorders are often collectively referred to as ‘agenesis of the corpus callosum’ or ‘ACC.’
Our Stories
When a child is diagnosed with a disorder of the corpus callosum (DCC) parents are often told to ‘wait and see’ as the impacts are many and varied and range from mild to severe. When an adult is diagnosed, it may explain a lifetime of medical puzzles. All our stories are different. Through sharing our stories, we can see these differences and also the similarities.
AusDoCC history
AusDoCC Inc. was created by a group of mothers of children with a disorder of the corpus callosum (DCC) in 2012. It has since expanded to include adults with a DCC, partners and grandparents. Through lived experience we aim to uphold our vision to ROAR for AusDoCC for Recognition, Opportunities, Access and Resources.
