agenesis corpus callosum, callosal agenesis, ACC, corpus callosum, corpus collosum, dysgenesis corpus callosum, partial agenesis corpus callosum, thin, thinning corpus callosum, pregnant and baby has ACC, pregnant and baby has agenesis 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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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):

2014 DISORDERS OF THE CORPUS CALLOSUM CONFERENCE - July 18-20, 2014 to be held in: Burlington, Massachusetts

The 2014 Conference
when:  July 18-20, 2014
where:  Burlington, Massachusetts (Boston Marriott Burlington)

"A block of rooms (king or 2 double beds) has been held, for NODCC conference attendees only, at a rate of $94.00 USD per night on a first-reserved basis.
Please arrange your lodging reservation directly with the hotel by phoning 781-229-6565 or reserving online.
Refer to group code NODCC.
Reservations must be made before June 15, 2014 to receive the group rate."

Register for the DCC 2014 Conference

Conference Information

To give an idea of what takes place at a conference view the: 2010 Conference Schedule
Note: Conference Schedule is found on pages 22-25 at link above. Page takes a few minutes to load.


Travis Research Institute
Warren S. Brown and his Research Team have been studying agenesis of the corpus callosum since 1992.

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.

California Institute of Technology (Caltech)
The Corpus Callosum Program at Caltech is focused on brain structure, social cognition and emotional responsiveness in individuals with agenesis of the corpus callosum.

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"

Agenesis of the corpus callosum: genetic, developmental and functional aspects of connectivity
Review by: Lynn K. Paul, Warren S. Brown, Ralph Adolphs, J. Michael Tyszka, Linda J. Richards, Pratik Mukherjee and Elliott H. Sherr, M.D., Pediatric Neurologist.

"Anomalies of the Corpus Callosum: An MR Analysis of the Phenotypic Spectrum of Associated Malformations"
ACC Research by: Elliott H. Sherr, M.D., Pediatric Neurologist, Steven W. Hetts, Stephanie Chao, Sarah Gobuty and A. James Barkovich.

Identification of Genomic Loci Contributing to Agenesis of the Corpus Callosum
Research Article in American Journal of Medical Genetics Part A, by: Mary C. O’Driscoll, Graeme C. M. Black, Jill Clayton-Smith, Elliott H. Sherr, and William B. Dobyns

The Gene Responsible for a Severe Form of Peripheral Neuropathy and Agenesis of the Corpus Callosum Maps to Chromosome 15q
"These findings are the first step in the identification of the gene responsible for ACCPN, which may shed some light on the numerous conditions associated with progressive peripheral neuropathy or agenesis of the corpus callosum."


ACC Network & ACC-Listserv E-Mail Support Group
Information about ACC as well as how to join the ACC-Listserv group.

National Organization for Disorders of the Corpus Callosum (NODCC)
The National Organization for 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.

ACCAwareness Support Message Boards
This message board was created by Lynnea, an adult who has ACC. She is the founder of ACCA which stands for ACCAwareness. Check out her support group for ACC and join in on the topics or create a new topic. Lynnea has set the support message boards up for ACC Parents and ACC Adults.

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.

ACC-Adults E-mail Support Group
****Note: For Adults who are diagnosed with ACC****
This group was created to help [Adults diagnosed with ACC] find and connect with other Adults who have ACC for the purposes of discussions and topics pertaining to living life as an adult with ACC, for social interaction, networking and support.
This is a private group. When you join and are a member of ACC Adults, your discussions are NOT viewable to the public.
Only members of this group will be able to view and respond to the messages.

ACC Australian Message Board
An Australian support group for ACC.

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.

Italian ACC Forum
Un meraviglioso ACC italiano Support Forum creato da parte della mamma di un ragazzo con ACC.
A wonderful Italian ACC Support Forum created by the mother of a child with ACC.

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

Chromosome Disorder Outreach, Inc.

Unique-Rare Chromosome Disorder Support Group


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 at $25.00. I feel it offers some good information but it is also very technical. This book can be ordered from CampusI.Com


KNOWING ALEX: Life with Agenesis of the Corpus Callosum

A new book co-authored by 24-year-old, Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer, who is also the illustrator of the children's ACC & Me book. The valuable, highly informative content inside KNOWING ALEX: Life with Agenesis of the Corpus Callosum, together with the unique ability to gain insight and become enlightened about ACC, through the dual viewpoints and perspectives of this mother/son writing team (in regard to how ACC personally affects their lives) is impressive, inspiring and absolutely amazing! This remarkable book will speak not only to parents who have a child with ACC, adults with ACC, and new parents-to-be who are expecting a baby with ACC, but will also open the eyes and hearts of so many others, including teachers, school staff, tutors, as well as doctors, other professionals and more.


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 (front) to posterior (back) 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.
It includes a list of frequent and occasional syndromes seen with ACC as well as diagrams and MRI pictures.

Imaging in Agenesis of the Corpus Callosum
This site is authored by Manohar Aribandi, M.D., Academic Chief of Neuroradiology at Geisinger Medical Center. It provides detailed information as well as MRI pictures of the brain.

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 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.

The ABC's of ACC
Quick Reference of key things seen in some kids who have ACC.
Printable version: ABCs of ACC
If you would like to receive a copy of this document in Word version please me.

Agenesis of the Corpus Callosum: Social Skills & Challenges
If you would like to receive a copy of this document in Word version please me.

Teaching Resources
A list of websites and teaching tools/methods made up of input from parents who have a child with Agenesis of the Corpus Callosum (ACC) and adults who have ACC.


Music and Learning

So often music reaches and touches us in so many positive and delightful ways. For many of our kids with agenesis of the corpus callosum (ACC) music is a way in to help a child learn a new skill, respond, imitate, make new sounds, and the list goes on. This is true for my own child who has ACC. Since he was a little baby he has always responded and learned more easily if music was involved, if a silly song was sung to teach him a body part. I love how music is able to reach in and bring out the most beautiful possibilities in a baby, a child and a grown adult. Music touches our spirit and moves us deeply.

MUSIC THERAPY

Listen and Learn Music

Explore Listen and Learn Music and meet the board certified music therapist behind it all, Rachel Rambach. You will find full versions of songs to sing with your child and she even offers the chance to create Custom Listen & Learn CDs with 10 of your favorite songs. She will even personalize Hello, and Good-bye songs for your child, student or class. Wow! Check out all of the cute Counting Songs. I am so thrilled to have found her website. My own child, Matthew, and I have been having so much fun singing and laughing and loving our music time together thanks to Rachel.
Some of Matthew's favorite songs are: Ugga Bugga Boo!, Ten Fat Turkeys, Friendly Words and Three Blue Pigeons.
If you want something very specific, Rachel will write a custom song for your child.


Marvelous Music
A Musical Pathway To Learning For Kids Who Have Agenesis of the Corpus Callosum

An Article written (with input from many parents who have a child with ACC)
about the effects of music and learning on kids who have ACC.


Pregnant and Baby Has ACC?

Read ACC & Moms-To-Be stories and see pictures of babies and kids who have Agenesis of the Corpus Callosum.

When you are a Mom-To-Be who finds out that your precious baby in utero has Agenesis of the Corpus Callosum it is shocking!
You typically want more information about ACC and are often times given worst case scenarios.
"ACC and Moms-To-Be" are stories written by Moms who have been there, Moms who received the news while they were pregnant that their baby would have ACC and Moms who understand.
I am very thankful to all of the Moms who took the time to write and share their very personal stories (and pictures of their babies) and for their willingness to reach out to other Moms-To-Be (and Dads) and offer encouragement, support and hope.


What Is It Like to Raise A Child With A Disability?
A wonderfully descriptive poem titled Welcome to Holland written by Emily Perl Kingsley to touch parents, family members as well as someone who doesn't have any idea what it is like.


Taking it Day by Day with Developmental Delays
Meet 3 year old Andy. He was born with partial ACC. Andy's mom, Amy, writes a blog straight from her heart. Check out all the cute pictures and accomplishments.

Crazy Wonderful Life
Meet baby Zeke (short for Ezekiel James). Zeke was born on November 4, 2011 (5 weeks early) and he has ACC. He also has an adorable big brother. Have a look at his family blog written by his Mommy, Jodean, who is a wonderful photographer. Take a peek at baby pictures of Zeke and read all about him and his family. The whole blog is adorned with really beautiful photographs.

Max with Corpus Callosum Agenesis
Meet Max who is almost 3 years old. He was born on November 7, 2009. Max was 8 months old when he was diagnosed, via MRI, with partial ACC. Check out Max's blog (with adorable pictures and his story, written by his mother, Laura). The family lives in Denmark and they speak Danish so Max's blog is written in Danish. But, you can use google translate to read Max's blog in your own language.
(in Danish): Max med Corpus Callosum Agenesi Mød Max, der er næsten 3 år gammel. Han blev født den 7. november 2009. Max var 8 måneder gammel, da han blev diagnosticeret via MRI, med delvis ACC. Tjek Max 'blog (med nuttede billeder og sin historie, skrevet af hans mor, Laura). Familien bor i Danmark og taler dansk, så Max 'blog er skrevet på dansk.

Samuel's Site
Meet 3 year old Samuel. He was born on April 3, 2009 and he has ACC. His parents created a very beautiful blog site full of positive posts and lots of adorable pictures.

Blogging for Beau
Meet 4 year old Beau. He has partial ACC and Epilepsy. His mommy, Amanda, shares all about Beau (including very cute pictures, too) through informative and heartfelt words.

A Que Sabe A Vida?
Meet 3 year old João Miguel (John Michael) who has ACC and epilepsy. He also has a big brother, Pedro (Peter). Their mom, Alessandra, writes a wonderful blog (in Portuguese) full of family pictures and information. They live in Brazil. Alessandra created a Facebook page joining the mothers in Brazil, who have a child with ACC, (18 Brazil families) that came into contact with Alessandra through her blog. Mora no Brasil e tem um filho ou filha com agenesia do corpo caloso? Entre em contato com Alessandra através do blog ou no Facebook ou no Central do Corpo Caloso para manter contato com outras 18 famílias no Brasil que têm crianças com agenesia do corpo caloso.

Quinn, Kristi and Lila
Meet 1 year old Lila...or "Little Miss" as her Mom sometimes calls her. Lila was born with ACC, cataracts and the most gorgeous eyelashes you've ever seen. Her Mom, Kristi, is a lovely lady who I've had the pleasure of corresponding with. Take a peek at Lila's blog and see all her adorable photos. In addition to having ACC and cataracts, Lila was also just recently diagnosed with Vici Syndrome (pronounced vee-chee), a very rare, syndrome.

Our Hydrocephalus Miracle
Meet 3 year old Carly. She was born on March 21, 2008. In her Mommy's own words: "Carly is: sweet, loving, energetic, moody, dramatic, smart, courageous, happy, witty, determined, funny, kind, strong-willed, shy, outgoing, brave, easy going, and friendly. She is my miracle!!!" Carly was born with ACC and Hydrocephalus, Partial Absence of the Septum Pellucidum, Septo-Optic Dysplasia (SOD), Chiari 1 malformation, Acqueductal Stenosis and Grade III Kidney Reflux. Carly also has a big brother and a great blog where you can read all about her with lots of cute pictures.

Gifts From Grace
Meet 5 month old Grace. She was born with an occipital encephalocele, Chiari type III malformation and ACC on March 4, 2011. Her Mommy, Karen, created a beautiful blog that dates back to the time when she was pregnant with Grace and learned that her baby girl would be born with an occipital encephalocele. Read her heartfelt feelings and see all the lovely photos of sweet little Grace (and her family).

Our Little Pieces of Heaven
Meet 8 year old Ethan and his family. Ethan was born with ACC and he is adopted.

Growing with our Little Cupcake
Read about Shana's 20 month old daughter who was born with Hypoplasia of the Corpus Callosum and a few other conditions. Shana (a Mom and also an Educator/Teacher) created an interactive blog/forum where she shares updates and input about her child and she welcomes you to Register and share your own input and comments. You can also check out her website Sweetly Unique for detailed information about ACC.

Jackie's Story
Meet 14 year old Jackie. She was diagnosed with ACC right before she turned 11 years old. She also has Cheiroarthropathy, Polycystic Ovary Syndrome (PCOS) and Scoliosis. You can read more about Jackie on her blog written by her mom.

Ben's Blessings
Meet 2 month old Ben. He is adorable. He was born in January, 2011. Ben was born with Down Syndrome and ACC. His blog is brand new and was created by his mommy. Ben's mommy would like to connect with another family who may also have a child with the dual diagnosis of Down Syndrome and ACC. You can see Ben's picture and read more on his blog.

Horsford's Happenings
Meet 1 year old Violet and her big sister. Violet was born with agenesis of the corpus callosum, colpocephaly, is missing her septum pellucidum and has the biggest blue eyes and wonderful beaming smile. I have been reading all about Violet since before she was born and I have also had the pleasure of corresponding with Violet's very nice Mommy. You can read more about Violet and her family on her Mommy's blog and also see lots of adorable photos and videos.

Gianna Marie
Meet adorable Gianna Marie, born on September 23, 2010. She was born with an occipital encephalocele, hydrocephalus, agenesis of the corpus callosum, chiari malformation type 111 and she also has two big brothers who adore her!! You can read all about Gianna and see very sweet pictures of her on Gianna's blog.

Grace's Journey
Visit 17 month old Grace who has agenesis of the corpus callosum, 7q36 deletion and other conditions. You can read all about Grace and see her cute pictures on her Mommy's blog.

Camilla Joy's Journey
Meet 1 year old Camilla Joy. She was born with a thin corpus callosum, is missing her septum pellucidum, has mildly thinned optic nerves and hydrocephalus. Discover the meaning of her lovely name and read her Mommy's blog posts to see pictures of Camilla Joy and learn more about her precious, little baby girl.

Lovely Things About Kannon
Meet 8 month old Kannon. He's a cutie with a big, happy smile. Kannon has partial ACC, Tetrasomy i5p, scoliosis and seizures. His Mommy writes a beautiful blog and shares the sweetest pictures of him.

Our Journey Home
Meet 1 year old Gabe. His Mommy and Daddy were blessed by God with Gabe through adoption. Check out one of my favorite blog post by Gabe's Mommy. Gabe has Schizencephaly, ACC, dysplasia of the septum pellucidum and a few other things that you can read about on the family blog. You can also see lots of adorable pictures of Gabe.

The Spears Family
Meet the Spears' third child, a boy, Anderson. He was born on June 1, 2010 and he has ACC. He also has two big sisters. Through heartfelt words, his parents share their journey and explain how they learned about the diagnosis of ACC. They also include cute pictures of Anderson and his sisters.

The Kammeraad Family
Meet Maria who was born with ACC and who joined her family through adoption with God's guidance. Maria is doing very well. She has a big brother, Carlos, who is also adopted. They are both adorable kids. Their mom, Stephanie, shares Maria's adoption story and photos and shows lots of family pictures too.

PB&J Time
Meet...Brett, Jackson & Peyton...TRIPLETS! They are adorable 4 year olds and you can see and read all about them. One of the triplets, Brett, was diagnosed with p-ACC and infantile spasms. Check out the one year tribute to triplets.

A Look Into Our Lives
Visit Carter and his little brother Cam. Carter is 3 years old and he has ACC. His mom shares their journey, the joys and speaks from her heart about her feelings.

Hope For Brianna
Meet 3 year old Brianna. She has ACC and a genetic chromosome unbalanced translocation of 3 and 4 and a deletion on 4 as well as a few other medical conditions. I have had the pleasure of getting to know Brianna's Mommy, Araceli, through e-mails over the past couple of years and it's a privilege to introduce her new blog here for others to get to know Brianna and her Mommy and family.

CELEBRATING THE BUGG'S *SPECIAL* LIFE
Meet 4 year old Bugg. He's so cute. Bugg has ACC, septo-optic dysplasia and cortical vision impairment. Bugg's Mama writes the sweetest, most adorable blog posts full of lots of love. Many times I find myself reading her posts through tear-filled eyes and gain a renewed sense of what is most important in life...Love.

Bryleigh Marie
Meet 1 year old Bryleigh. She was born with a thin corpus callosum, hydrocephalus and an encephalocele.

Andersen Family Blog
Visit Avery who is 4 years old. She has hypogenesis of the posterior corpus callosum, absence of the septum pellicidum, optic nerve hypoplasia, septo-optic dysplasia, hydrocephalus and a few other medical conditions listed on her blog. Her mom posts lots of pictures and even some videos.

Beauprez Family
Meet 1 year old Cade. He's a cutie. His mom shares lots of pictures of him as well as information on his development. Although it is not mentioned on the blog, she shared with me through e-mail that Cade has complete ACC.

Matt & Mindy = Mikaela & Molly
Meet Molly. She was recently diagnosed in December 2009 with ACC. Molly also has Colpocephaly and a microdeletion on her 3rd chromosome. Molly's Mommy is a special needs teacher.

Kaiden's Journey
Meet 1 year old Kaiden. He has ACC and Hydrocephalus.

eSpeciallyBen
Meet 6 year old Ben. He has partial ACC. This blog is written by Ben's Mom, Vanessa, and her input on various issues will speak to many parents who have a child with special needs.

Meet Jayna
Jayna is a 6 year old girl who was recently diagnosed in October 2008 with complete ACC. She is high functioning and is making progress on a 'normal' developmental level. Jayna has had a few seizures but she is not on seizure medication at this time.

Our Gift of God-Nathaniel
Meet Nate. He's 4 years old and he was born with ACC and colpocephaly.

Meet Jake
Jake is 5 years old and he has ACC & Angelman Syndrome and a fantastic happy smile! :)


Jake at the Angelman Syndrome Foundation Walk-a-Thon on May 16, 2009

brayden and mommy
Meet 5 year old Brayden. Learn all about him and his journey with ACC and other medical conditions from his mommy's perspective. She has written a very beautiful, touching and heartfelt blog.

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.

God is Gracious - Iain
Meet brand new, Iain, who was born with ACC.

Nora's Site
Meet 3 year old Nora. Nora has ACC, Arachnoid Cysts and Infantile Spasms also called West Syndrome.

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).

HAPPINESS IS...

MEAGAN
Meet Meagan...a beautiful little girl who has agenesis of the corpus callosum.


A Boy with a Whole In His Head
Meet Joseph, a 49 year old adult with ACC, who was diagnosed 4 years ago. Joseph is an excellent writer. And to say "he has a way with words", is an understatement. Check out his blog for yourself. Whether you are an adult with ACC or the parent of a child with ACC, you will definitely gain insight into Agenesis of the Corpus Callosum (and relate in some way to what he shares about his own ACC experience) from his unique ACC Adult perspective.

Kyle's Site
Kyle is an adult with ACC who created a personal blog called Living in My ACC World.

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.

Beyond My Wheelchair
Meet Joseph Bishop, a young man in Colorado with agenesis of the corpus callosum who discovered his gift for painting and opened up his world of self-expression. (Please be advised that some of his paintings are of the female body)

Me and My ACC
Visit Lynnea's ACC Knowledge and Awareness page. She is a 25 year old lovely lady who was diagnosed with ACC when she was 20 years old. Check out her ACC Awareness Blog and also her ACC Success Stories. If you have ACC (or a corpus callosum disorder) or if you are the parent or family member of a child with ACC (or a corpus callosum disorder) and you are interested in sharing your own story on Lynnea's ACC Blog or an ACC success story please E-Mail her.
Get to know her a little more by reading Lynnea's personal story of life with ACC.

Please read and sign the: Petition to Help Generate Media Attention for ACC

Jailynn's Journey with ACC
Jailynn is 2 1/2 years old and she has complete ACC, Epilepsy and cortical dysplasia of the right side of her brain.

Amelia's Page
Meet 14 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.
Visita Pietro. Vive in Italia. Pietro ha agenesia corpo calloso. Il suo sito web è scritto in italiano.
Pietro's Mom created an Italian ACC Forum for support.
La mamma di Pietro ha creato un Forum Italiano ACC per il sostegno.

Kearstin's Memorial Page
Kearstin had ACC and has gone to Heaven to be with God. Her mom has kept journals that you can read. I have had the pleasure of corresponding with Kearstin's mom and she is a very warm, caring person and friend.

The Ruhge Duo - Memorial to Rowan
Twins...Rowan and Hayden! The twins were born on May 7, 2009. Rowan was born with ACC, Lissencephaly and he was missing part of his Chromosome 14 (14q deletion). Rowan passed away in March of 2010 and is in Heaven with God.

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.

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.

The Many Faces of Ben
A very touching and informative story about Ben, a 21 year old young man who has ACC and Opitz G/BBB Syndrome. More information about Opitz can be found at Opitz G/BBB Family Network. The website was written by Ben's mom, Jan.

Azaria's Page
Visit 5 year old Azaria. She has ACC and Aicardi Syndrome. Read all about her on the Aicardi Syndrome site and see all of her very sweet photos, too.

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.

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.


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 19 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 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.

In April of 2009 I began a Agenesis of the Corpus Callosum Blog. I wanted to create a site that could offer positive information, teaching tools, a variety of information and a place where other people could post comments and give their own valuable and insightful information. I invite you to have a look and please feel free to post your comments on any entries that inspire you to do so. What you offer and share has the potential to help someone else. I look forward to hearing from you.



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This website created on 6-10-98