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When my wife Sarah was 20 weeks pregnant, we had a routine ultrasound and the doctor told us that it appeared the baby had Agenesis of the Corpus Callosum (ACC). The Corpus Callosum is the main bridge of nerves in the brain that connect the right and left sides of the brain. Agenesis means it didn’t develop.
We were told not to search Google as there was not a lot of helpful resources online and instead all we were going to see was a number of horror stories. Sure enough that’s what we saw. There was nothing online that we knew of that could provide us with information about ACC, nor was there any support that we could lean on in our time of need.
Four years later we have a beautiful daughter named Ellah (read our story here). During these years we have learned so much and we are thankful for the parents of children with ACC that we have met that have given us important information and support.
Today I would like to pay it forward and share what I learned with other parents of children with ACC. In this post I will share 15 ACC Resources. I hope you will find it helpful.
What is Agenesis of the Corpus Callosum (ACC)
ACC is a congenital brain defect. There is no cure. People who have ACC and their families need to learn how to live with the deficits and blessings that can accompany the disorder. Again you can refer back to my blog post for the nightmare of what it can be like without resources.
Its Rare…. Very Rare
Part of the reason for the scarcity of information, is the rarity of the condition. The best numbers I can find show about 1 in 4000 people have some abnormality in their Corpus Callosum (referred to as DCC or Disorder of the Corpus Callosum) which is about 1.75 million people in the world or .00025% of the population. Under that monicker are a number of disorders; but relevant to me is ACC (Agenesis of the Corpus Callosum) which is divided into PACC (partial ACC) and CACC (complete ACC). Ellah has CACC which has an occurrence of .05 in 10,000 which is 35,000 people in the world or .000005 of the population – to put this in perspective, in the United States, something is considered a “rare Disease” if it affects less than 1 in 2,000 people.
15 Important ACC Resources
Here is a list of resources you should have if you or someone in your life has ACC. These resources will help you get the most concise and thorough understanding of ACC
1. The NODCC
The National Association of Disorders of the Corpus Callosum is the main resource for people with ACC and their families. They have resources, newsletters, Facebook groups and a bi-annual conference.
The ACC-L Listserv is an email discussion group focused on disorders of the corpus callosum and related issues. Currently, more than 500 people (adults with ACC, parents and other family members, and professionals) participate in the listserv. The Listserve based out of the University of Maine, and has a lot of parents who can share information with someone new to ACC.
This Facebook group was created for mom’s of kids with disorders of the corpus callosum. The group was created as a place to share triumphs, disappointments, frustrations, humor and anything else that only those with a family member with ACC would truly understand.
The ACC Wikipedia page is a great place to start learning the basics about ACC. I share this with people if they want basic information about what ACC is all about.
The National Institute of Neurological Disorders and Stroke provides basic information about ACC
Dr. Sherr is a leading researcher in the world of ACC. This link provides information about him and his ACC research.
7. Acc and Me
ACC and Me is a book for kids to help understand the basics of ACC . its great book to show to siblings, friends and classmates and can help explain ACC to other children.
8. Dr Lynn Paul
Dr Paul is a leading doctor and research of ACC at CalTech University. This link provides information on her ACC research studies.
9. Knowing Alex
This poignant and inspirational memoir, written by Alex and his mother, Cindy, tells how their family came to know the person Alex is, and how they helped him become the person he could be.
10. Blogs about ACC
Here are some additional blogs, sites and Facebook Groups that may be helpful: