Earlier in June this year some of our committee (Maree – Secretary, Tina – President and Michael Research officer) had the privilege of attending the 4th Cortical Connections of the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5) at the Imagine Institute in Paris. The IRC5 was begun in 2015 in Brisbane at the first Cortical Connections conference. Many visiting professionals from around the world stayed on that weekend to attend AusDoCC’s first national conference. I had the privilege of attending both back then, knowing that this would become my obsession but not knowing that changes in our community would happen so rapidly.
The IRC5 has grown and we are seeing the fruits of their collaborative labour. Researchers from ten different countries presented new research related to the corpus callosum and corpus callosum disorders, to delegates from many more countries. Much of the research is yet-to-be published so I can’t provide great levels of detail into the work. However, topics included genetics; the role of the Deleted in Colorectal Cancer gene, the role of netrin1, the role of miRNAs in Fetal alcohol syndrome, developmental plasticity in ACC, the role of microglia and primary cilia in development of the brain, clinical fetal MRI and identifying brain changes, long term outcomes studies of children with ACC, neuroplasticity in ACC, diagnosing ACC in in utero scans, ARID1B mutations and ACC, comparison of social cognition in ACC and ASD, the KIF21B gene and ACC, the anterior and posterior commissures in ACC, outcome prediction in ACC, tubulin genes and ACC and other topics. If you would like to know a bit more about the research presented, please email us at info@ausdocc.org.au
The committee members present represented AusDoCC at the inaugural meeting of The Bridge, a consumer advisory group with (for the moment) representation from six countries’ family organisations, like AusDoCC. We hope to be a conduit that operates outside of groups like AusDoCC and the IRC5 but works with them to provide our community the information they need and to provide IRC5 with feedback from our community about what sort of information they want to know about. This group is just getting started. Watch this space.
The three of us from the AusDoCC committee also spoke at a round table at this event and were well received. It was encouraging, to say the least, that the struggles of our community are universal. The French equivalent of AusDoCC – their family support group – took the opportunity of having many minds in one place and had their first national conference at the same event.
We hope through cooperation with these other groups in our community and through The Bridge that we can get more research focusing on what we need as a community and change the lives of those affected by ACC for the better.
Michael Shanahan
You can see all the presentations (in French) at the inaugural French family conference here: