We ROAR for all people with a disorder of the corpus callosum –
Recognition, Opportunities, Access and Resources
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Disorders of the Corpus Callosum Awareness Day 2020
Meet Karina Bustillo, 5, from Brisbane. Karina has ACC and loves her bicycle, ballet and bouncing.
She also loves Edna, the fat tailed dunnart with no corpus callosum.
She might be little, but the pint-sized Brisbane Ballerina you're about to meet has a massive heart… and a very special mind. @R_DAlessandro9 #9News pic.twitter.com/1WsOzdjYIn
— Nine News Queensland (@9NewsQueensland) July 1, 2020
Every year on July 2 we celebrate Awareness Day globally.
We chose the middle day of the year to represent the corpus callosum in the middle of the brain.
Please join us in a day of awareness for amazing brains around the world and take part in an activity, become an AusDoCC member or make a donation to AusDoCC
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Exciting News
Our very popular and knowledgeable Chief Scientific Advisor, Professor Linda Richards AO, is taking up a new position in the US. We congratulate Linda on this success which reflects her position as a key scientist in global ACC research. The ties with AusDoCC will remain unbroken and everyone will still be able to see Linda at our major events. We are so proud to have you as our patron and advisor and so many of us in the AusDoCC community have developed wonderful relationships with you and your team. Thank you and huge congratulations.
Click here to read about Linda’s new position at Washington University
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Corpus Callosum Related Videos and Recordings
Professor Linda Richards explains disorders of the corpus callosum
The Mysterious Corpus Callosum – All in the Mind, Radio National
Australian adults with a DCC and parents talk about their experiences with ACC
Events
We are sorry to say that all face to face gatherings and events have been either cancelled or postponed until further notice. We will keep you updated as the state of the world becomes clearer. Meanwhile we are jumping on the ZOOM train and planning some substitute activities online. We will keep you posted.
Stay safe everyone and keep washing your hands.
Education
Disorders of the Corpus Callosum and Coronavirus (COVID19)
AusDoCC Official Statement
Disorders of the Corpus Callosum are complex developmental brain disorders that can occur in isolation with no other brain or organs system abnormality (known as isolated ACC), or in conjunction with other abnormalities of the brain and body (often in a syndrome).
There is currently no evidence that people with isolated ACC or isolated partial ACC are more susceptible to infection by the coronavirus (called SARS-COV2 virus), or that they would experience worse symptoms (called COVID19 illness) if infected.
If children or adults have a disorder of the corpus callosum in conjunction with other medical issues including lung, heart, hormone, metabolic or immune conditions or muscle weakness, then they may be at a higher risk of complications if they caught the SARS-COV2 virus / COVID19 illness. These patients may have more severe symptoms of the COVID19 illness and may be less able to recover quickly from the respiratory complications such as pneumonia or more broadly medical complications.
If individuals and families have any questions regarding their specific risks related to COVID19, it is imperative that they speak with their physician for advice. It is important that you strictly follow the Australian Government recommendations related to COVID19 to avoid catching or spreading the virus.
https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert
In addition, the following resources from the epilepsy society1, autism spectrum Australia2, or this comprehensive guide from the Association of British Neurologists3 may be helpful for those with specific symptoms.
- https://www.autismspectrum.org.au/how-can-we-help/helping-you-to-navigate-covid-19
- https://cdn.ymaws.com/www.theabn.org/resource/collection/6750BAE6-4CBC-4DDB-A684-116E03BFE634/ABN_Neurology_COVID-19_Guidance_22.3.20.pdf
It is important that you only follow advice from your physician or from reputable sources. At present there are many inaccurate and sometimes illegal claims being made on the internet regarding COVD19 especially in regard to unproven treatments and non-approved testing methods.
The medical and scientific advisors of AusDoCC wish all the AusDoCC community the best during these difficult times. We look forward to being able to catch up with you again face to face at a future AusDoCC event once the risk from this virus passes, which it will.
We thank the AusDoCC medical and scientific advisors for compiling this document
©AusDoCC April 2020. AusDoCC|PO Box 533|Altona|3018| www.ausdocc.org.au
School
Explaining ACC to your child’s teacher. click here for a helpful resource
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NEW RESOURCES COMING SOON
TEN TOP TIPS for DCC – covering life stages from pregnancy to adulthood
Research
New Australian study for Adults with DCC
Click here to contact Sophie Dowling at QBI
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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.
Pieta Shakes, lead researcher.
Click here to contact Pieta Shakes
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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.
California Institute of Technology (Caltech).
Click here to find out more about this study.
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Governance
Annual AusDoCC Face2Face Planning Meeting and Avo Tea
Major AusDoCC Sponsors
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.
Adults with DCC
Click here to meet Georgie, Bill & Connor
15 Adults with a DCC, 3 carers and 2 facilitators spent a valuable 4 days in Brisbane touring QBI and working together with leading corpus callosum researchers and clinicians.
Sponsored by Australian Government Conference Initiatives Grant and AusDoCC Inc.
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Brain Sells
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.
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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.
