In late June 2018 Abbie and I were fortunate to be able to attend our fourth disorders of the corpus callosum (DCC) conference in America. It was held by National Disorders of the Corpus Callosum (NODCC) in Costa Mesa and takes place on alternate years to the AusDoCC national conference. Over the years I have made some amazing friendships with the international DCC community including families and professionals. Abbie, my daughter (28) spends the most valuable four days of her year at that conference. She is with her ‘tribe’ and it is the one place and the one time

where she can truly relax and belong, with no responsibilities and no value judgements. That’s why we keep going.

It has become a bit like that floppy, familiar piece of clothing that you return to because nothing quite puts you in the same comfort zone. This year half of the AusDoCC Committee members managed to get over there as well*¹. That was an added extra for us, as we were able to share our people and places with our Australian AusDoCC Committee family. I joke to friends about eating a lot of noodles to get there but actually, it’s true!

Each year I revisit some of the information but there are also new findings in the latest research and a few key messages. I remember the first big impact was made by Dr Lynn Paul’s words to a group of struggling young adults in their 20s, “Let your twenties be an extension of your teens.” The collective shoulders in the room rose visibly as the group was legitimately allowed time to do things. That’s a ‘thing’ with DCC. Many skills and milestones need more time.             Things also change. In 2010, we were told how much more severe the impacts were for those with complete ACC in comparison with partial ACC. It made sense. No bridge versus a part bridge, right? Wrong! In 2014, it seemed they were about on par. Fast forward to 2018 and it seems that isolated, complete ACC may indicate better outcomes and pACC is presenting more issues. There are still so many unknowns but brain research is a rapidly moving area and the scientists are collaborating globally.

Prior to the family conference I attended a science symposium presented by the International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC⁵) The IRC⁵ is a global group of scientists working together to discover the causes, consequences, and effective interventions for disorders of the corpus callosum and associated disorders of cerebral connectivity. Their collaboration has seen an expansion in DCC research and the benefits of combining data from various countries for more accuracy. In the future they hope to be able to establish a central global data base, with support from families and adults living with DCC. The benefits to corpus callosum research would be enormous.

The IRC⁵ symposium had a stellar international line-up and included some of our own scientists such as Professor Linda Richards and Associate Professors Simone Mandelstam and Paul Lockhart. It was such a privilege to be present and witness the results of not only amazing scientific collaboration but also the camaraderie among this group of eminent brain scientists. Corpus callosum research is in great hands.

My key take home messages this year are:

• Scientists are the first to tell us that there are still many They are working hard to understand DCC.
• Corpus callosum disorders are heterogeneous^*2 in cause, presentation, impacts and management. The common element for all is the indisputable corpus callosum abnormality diagnosed though brain MRI. All health practitioners need to understand this for the most effective management of an individual with a There is an enormous range of associated conditions and impacts and although there will be some overlaps, every person is different.
• Many foetuses, babies or children are diagnosed with isolated ACC but on further investigation this is rarely the case. Isolated ACC is rarer than they thought.
• Associate Professor Paul Lockhart tells us that

“Genetic disorders are often caused by a single letter change in the 3 billion letter genetic code. Finding the causative change can be difficult. It is equivalent to finding a single typo in 300 copies of entire Harry Potter series."

Noodles anyone?

Footnotes.

 

*¹All AusDoCC committee members financed their own attendance at the NODCC conference and no AusDoCC funds were used.

 

*² heterogeneous – composed of parts of different kinds; having widely dissimilar elements or constituents

 

 

Maree Maxfield

This year I was lucky enough to attend my first conference National Organization for Disorders of the Corpus Callosum (NODCC) with my son Hamish. On June 25th we set off to America via Hong Kong. After flying for 20 hours we finally arrived. As the conference was held in California this was an awesome excuse to turn it into a short holiday. Visiting Disneyland and Universal studios wasn’t going to be missed while we were there.

The 2018 NODCC conference was held at the Westin Hotel in California. Conference registrations took place between 8am-9am where we were given our conference bags that included the all important program. Four concurrent sessions were held as well as a siblings session and a session for Adults with ACC.

There were 550 people in attendance. There was lots of time to socialise and meet new people. It was different being on the other side and watching it all unfold, as I have previously been one of the organisers of our conferences in Australia. The sessions were informative however geared towards the US people. Lynn Paul, Elliot Sherr and Warren Brown were in high demand, it’s always great hearing them speak. The lovely Simone Mandelstam, one of AusDoCC’s advisors was also one of the guest speakers. Niki, Maree and myself were also lucky enough to spend some time chatting with Linda Richards which was a highlight of being at the NODCC conference.

There were raffles, trade tables and a huge silent auction. It seems that a conference of that magnitude takes a lot of very dedicated volunteers. I thought it was very well executed and the team all worked extremely hard to put together an amazing conference.

Over the 3 days that the conference ran I met some great people that I can now call my friends. Hamish also enjoyed the sibling program and made some great friends with people he shares a common bond with.

Kristina Coburn