agenesis corpus callosum, callosal agenesis, ACC, corpus callosum, corpus collosum, dysgenesis corpus callosum, partial agenesis corpus callosum, thin, thinning corpus callosum, complete ACC, partial ACC, hypoplasia, hypoplastic corpus callosum, acallosal, callosal dysgenesis, absent corpus callosum,
ANGELS AROUND THE WORLD
(AGENESIS OF THE CORPUS CALLOSUM)



~~All are precious in His sight~~

To truly love someone is to see beyond the surface and accept them for who they are deep inside. Everyone has the right to feel good about themselves, to feel special and worthwhile and to be accepted for who they are.

Angels In Disguise

This page is dedicated to the children and adults around the world who happened to be born with a rare condition known as...

"Agenesis of the Corpus Callosum."

It's the fancy term meaning that the corpus callosum (the middle section of the brain which connects the right and left hemispheres together and allows for communication between the right and left side of the brain) is missing. Agenesis means absence.

What Causes It???
How are they affected? What is their prognosis? How serious is it?

?
These are questions that every parent asks and soon finds out that there are no easy answers and no concrete answers either. That is because each child is affected so very differently and there is no way to tell how a child will be affected. The range of effects is anywhere from slight learning disabilities, to severely mentally and physically challenged and anywhere in between. To make things even more confusing, there are some people walking around today who are missing their corpus callosum and don't even know it. They have no symptoms whatsoever.

Corpus Callosum Disorders Include:

ACC Brain Images
This site displays ACC brain images (courtesy of Dr. Elliott Sherr a Pediatric Neurologist at University of California in San Francisco).

Disclaimer:

The information found on this web site is written based upon my own personal experiences and comes from what I have learned while dealing with my son's ACC. Please seek the advice of a qualified physician for medical advice.

What CAN I Expect?

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It is VERY IMPORTANT that your child sees a Pediatric Ophthalmologist after the diagnosis of ACC. Their eyes are at risk for possible problems including optic nerve problems, Optic Nerve Hypoplasia (ONH), Septo-Optic Dysplasia (SOD), Aicardi Syndrome and other conditions. More information about Aicardi is available through the Aicardi Syndrome Foundation.
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What Should I Do Next?

It's Such A Simple Thing...?

I hope that this site is a place for parents to connect and learn and find other parents through the many links so that they don't have to be alone in their thoughts, their feelings and their numerous questions. I also hope that this site is a place for adults with ACC to connect with other adults who have ACC and find support. It most certainly isn't limited to parents or adults with ACC only and I hope that grandparents, family members, friends, teachers, therapists and anyone wishing to know more about ACC will benefit from this site as well.

From The Heart

You See It In Their Eyes

Below are links to many sites on the internet which deal with
Agenesis of the Corpus Callosum (ACC):

2008 DISORDERS OF THE CORPUS CALLOSUM CONFERENCE

The 2008 Conference:  Cherry Hill, New Jersey
when:  July 18-20, 2008
2008 Conference Details

ACC Research Study
Dr. Elliott Sherr at UCSF University of California, SanFranciso is conducting a study of agenesis or dysgenesis of the corpus callosum. Information on how to enroll in this study can be found on the web site above.

Current Research Programs
This is a list of current research studies regarding ACC.

ACC Research Report
This report is written by Gary Schilmoeller and Kathy Schilmoeller (co-founders of the ACC Network) and titled: "Minding the Gap: A Large Scale Survey of Agenesis of the Corpus Callosum and Other Callosal Anomalies"


ACC Network & ACC-Listserv E-Mail Support Group
Information on how to receive written information in the mail about ACC as well as how to join the ACC-Listserv group.

National Organization of Disorders of the Corpus Callosum (NODCC)
The National Organization of Disorders of the Corpus Callosum is a non-profit corporation established in 2002 by professionals, parents, and individuals with agenesis of the corpus callosum (ACC) and other callosal conditions, their families, and professionals. Explore the ACC Conference Handouts for a variety of informative information. You will need Adobe Acrobat Reader to view the handouts.

ACC Community Message Boards
Register for free and browse the many forums pertaining to agenesis of the corpus callosum including a General Discussion about ACC forum, Parents of Children with ACC forum, Individuals with ACC forum and many other forums.

Agenesis of the Corpus Callosum Yahoo Message Board
You can register for free and join in on the many topics and discussions about ACC.

Agenesis of the Corpus Callosum ACCKids
This group offers a web page with stories of ACC children as well as a Yahoo e-mail support group called ACCKids.

CORPAL
A Support Group for the families and carers of those with Agenesis of the Corpus Callosum and Aicardi Syndrome based in the United Kingdom.

Septo-Optic Dysplasia (SOD) and Optic Nerve Hypoplasia (ONH)
A web site which includes wonderful information about SOD/ONH and support.

Chromosome Deletion Outreach, Inc.


Callosal Agenesis A Natural Split Brain? By: M. A. Jeeves
personal note: This book is very expensive if purchased new. I purchased my copy used for significantly less. I feel it offers some good information but it is also very technical. This book can be ordered from CampusI.Com

The Official Patient's Sourcebook on Agenesis of the Corpus Callosum
personal note: I have not yet read this book.


Agenesis of the Corpus Callosum
View two videos titled "What is agenesis of the corpus callosum?" and "What is the outcome of agenesis of the corpus callosum?" by Elliott Sherr, M.D., Ph.D. Pediatric Neurologist at University of California San Francisco.

The Human Corpus Callosum--Info & Pictures

What Does The Corpus Callosum Look Like?
This is a very graphic picture of the corpus callosum in detail.

The Corpus Callosum Divided Into Sections
This site breaks down the human corpus callosum into four sections.
The formation of the corpus callosum occurs approximately between the 8th and 20th embryonic weeks in an anterior to posterior direction with the genu forming first, followed by the body, the splenium and finally the rostrum.

Atlas Images of the Corpus Callosum
This site labels the corpus callosum and surrounding structures.

Agenesis of the Corpus Callosum--Unraveling the mystery
An article in RT Image (February 14, 2005, vol. 18, no. 7) written by Susan L. Koubek. Susan is a second-year radiology student.

TheFetus.net
Information about Agenesis of the corpus callosum written by Gianluigi Pilu, MD including a list of frequent and occasional syndromes seen with ACC as well as diagrams and MRI pictures.

Corpus Callosum, Agenesis
This site is authored by Manohar Aribandi, M.D., Academic Chief of Neuroradiology at Geisinger Medical Center and provides detailed information and MRI pictures.

Where is the Optic Nerve?
This site shows a graphic view of the right hemisphere middle view of the human brain and labels the optic nerve and where it is in relation to the corpus callosum.

History and Anatomy of the Corpus Callosum
Information about the corpus callosum including a diagram and MRI.

Standard Split Brain Experiment
This site deals with an experiment done on people who have had their corpus callosum severed to control severe seizures.

The Cerebral Hemispheres

Specialized Functions of the Cerebral Cortex
Color coded diagram of the brain noting the function of each section

Specialization of the Two Hemispheres
This site describes the different functions of the left and right sides
of the brain in detail

Information Highways: How the Brain and Body Communicate

Detailed View of the Human Brain

An Overview of the Brain
This site is authored by AboutKidsHealth in collaboration with The Hospital for Sick Children (SickKids) in Toronto, Ontario Canada. It offers interactive information about the brain and it's functions. They also have a JustForKids section called Brain Wave All About the Brain.

MRI of the Corpus Callosum

The Whole Brain Atlas
See MRI pictures of any particular section of the brain.



Considerations For Educators Of Students With ACC
This page is written by Mr. McCallum a teacher who has worked with an ACC child in his classroom. He offers detailed and valuable information. The web page version is no longer available. If you would like to receive a copy of this document by Mr. McCallum please E-Mail me. He wrote the following line which I feel is the best possible way to begin to educate any child...

"Finding a student?s learning style is key for the educating of that child."

Finding "the keys to Matthew"
An article written in 1998 about ACC based upon an interview with Gary and Kathy Schilmoeller and their son, Matthew, who has ACC. Gary and Kathy Schilmoeller are the founders of The ACC Network.

Educational Suggestions For Children With ACC: A Beginning
Written by Kathy Schilmoeller. You will need Adobe Acrobat Reader in order to view this page.


What Is It Like to Raise A Child With A Disability?
A wonderfully descriptive poem/story written to touch parents, family members as well as someone who doesn't have any idea what it is like.


My Exceptional Child
Meet 16 year old Matt with ACC. His mom is a teacher and she created a wonderful page absolutely filled with excellent information.

Isabella's Page
Visit 4 year old Isabella. She has Agenesis of the Corpus Callosum, Agenesis of Septum Pellucidum, a chromosome deletion at 1q(44) and a Ventricular Septal Defect-VSD (small hole in her heart).

Kyle's Site
Kyle is an adult with ACC who created a fantastic ACC web page including slide photos of children with ACC and a location map. If you would like to learn more about Kyle you can read entries on Kyle's personal ACC Blog

Ingunn's Site
Meet Ingunn, an adult from Norway who has C-ACC. Her web site is written in Norwegian but she also speaks English.

Amelia's Page
Meet 9 year old Amelia. She has partial agenesis of the corpus callosum, an unbalanced chromosome translocation of 2p and 14q,
Periventricular Leukomalacia (PVL) and a few other diagnoses that are listed on her web site.

Living with Special Needs
A positive and encouraging article written by Lindsey Hopkins about her younger brother, Tyler. Tyler has ACC. The story was published in the May, 2006 issue of her high school newspaper, The Panoptic.

Pietro's Page
Visit Pietro who is from Italy. Pietro has ACC. His web site is written in Italian.

Kearstin's Page
Visit 3 year old Kearstin who has ACC and read her journals. I have had the pleasure of corresponding with Kearstin's mom and she is a very warm, caring person.

Gabe's Page
Meet 5 year old Gabe who was adopted from Korea. Gabe has arachnoid cysts and dysgenesis of the corpus callosum and he functions on a typical developmental level.

Michelle's Page
Visit 6 year old Michelle with ACC in Australia.

Cody's Page
Visit 22 year old Cody with ACC and read his story.

The Coenen Page
Visit 11 year old Christianne with ACC in The Netherlands. This page is written in both English and Dutch. Read about Christianne and all the things that she can do.

Shennie's Story
Visit Shennie's Memorial Page. She had complete ACC and Aicardi Syndrome.

Agenesia de Cuerpo Calloso (ACC)
Esta pagina se escribe en el espanol. (This page is written in Spanish)
Esta pagina proporciona informacion acerca de ACC e incluye varios cuentos acerca de ni?os que tienen ACC.
(This page provides information about ACC and includes several stories about children who have ACC)

Payton's Page
Visit 3 year old Payton. Payton has Oral Facial Digital Syndrome Type 1 and ACC.

Emmelia's Story
Written by a good friend of mine who has a very sweet little girl with ACC and Opitz G Syndrome.

God's Miracle
A very touching and informative story about Ben, a 17 year old young man who has ACC and Opitz G/BBB Syndrome written by his mother, Jan.

Azaria's Page
Visit 5 year old Azaria. She has ACC and Aicardi Syndrome. She has another web page on the Aicardi Syndrome site that can be viewed by clicking on Azaria.

Victoria's Page
Visit Victoria's Memorial Page. She had ACC and Aicardi Syndrome. Meet her whole family.

The Fowler Family Home Page
Visit 3 year old Katie in Australia who has ACC, Optic Nerve Hypoplasia, Microcephaly, Dandy-Walker Variant and Epilepsy. She shares lots of pictures and her story.

Home of The For Franki Foundation
Visit 9 year old Franki in Pennsylvania who has ACC, Dandy Walker Syndrome, a rare form of Spina Bifida with Lipomyelomenigocele and a Tethered Cord as well as Iris Colomba.
Franki's mom, Marlene, runs a forum for Dandy Walker Syndrome This forum is a wonderful place to find support and meet other parents who understand.

The ACC Square
Visit 4 year old Maki in Japan, a little girl with ACC and Cerebral Palsy. This site is written in English and Japanese.

The Potter Family Home Page
Visit 3 year old Elijah with ACC, Hydrocephalus and Sotos Syndrome. See his baby pictures
and family too. More information about Sotos Syndrome is available through the Sotos Syndrome Support Association.

Andy's (Hi)story
Visit Andy, a little boy in Germany with ACC and MASA Syndrome. See Andy's Main Web Page

Raquel's Page
Visit 8 year old Raquel who has ACC. This page was created by her aunt. Her family speaks Spanish.

Hunter Gale's Home Page
Visit 8 year old Hunter who has ACC.

Alex's Story
Visit Alex who is 6 years old in Australia. Alex has partial ACC also known as dysgenesis of the corpus callosum, Mosaic Trisomy 18 also called Edward's Syndrome and Shapiro's Syndrome also called Spontaneous Recurrent Hypothermia.

The Greer Family Home Page
Visit 3 year old Julie in Virginia who has partial ACC also known as dysgenesis of the corpus callosum and a balanced translocation of her Xp; 3q chromosomes.


If you have a web page about your child with ACC, or a web site pertaining to ACC and would like to include it here please E-Mail me and let me know. If you have any questions please feel free to ask.

I am Matthew's mommy. He is 14 years old and was born with ACC. He is affected with many challenges and they are unique to him. Here is Matthew's Story as posted on the Same Diagnosis Message Board in The Family Village.

I was very much alone with this diagnosis in the beginning and it wasn't until almost 4 years later that I met another mom who happened to live just a few miles from my home who has a daughter with ACC. It has been such a blessing to find support and have contact with someone who understands my feelings, my thoughts and the emotions that can go along with parenting a child with this unique and rare disability. Just a few months ago we found out that yet another mom lives right in our area with a daughter who has ACC as well. We are very fortunate to have each other.




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This website created on 6-10-98

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