Agenesis of the Corpus Callosum/The Absence is Present

[grettagrids]

I thought I was the only one born this way.. glad i have a name for my birth defect and to know I am not alone.. My family has always been ashamed of it:(

[Zolwena]

Not sure if you are part of the ACC Network or not, but check em out! I would love to hear from you and yours!! Can also get ya info on connecting to the NODCC too.

[urbanerenewal]

@Zolwena I was part of the ACC Network back when it was a xeroxed list of about a hundred names mailed out by Gary and Kathy Schilmoeller. I've also contributed to the NODCC, have attended a convention, but I find their overwhelming emphasis on fundraising - and lack of interest in alternative treatment options - disappointingly similar to other institutionalized orgs. I've learned to focus my volunteer energies and financial resources locally. Thanks for your interest - good luck to you

[Zolwena]

@urbanerenewal I belong to the ACC Network and have been to a couple of their get togethers before the NODCC took over, I agree that fundraising became their first priority and so I have never gone to any of their conventions or meetings. I figured out the cost for a short weekend at one and decided that for the cost, I could take my daughter, husband and myself to disney world in FL, which we did! LOL. Had a great time there! I remember the xeroxed mailings too! Miss them for sure! Huggles!

[gregorywdean]

Thank you for your beautiful video! I have ACC. I am a 52 years old man. I found out about this about 2 years ago. I'v been married 22 years. We have 5 kids. I drive a truck. I love photography. I count my Blessing everyday!

[dracd235]

Thanks for an absolutely precious video - a true gem on several levels all at once

[urbanerenewal]

Thanks - he's 20. You might want to check out the National Organization for Disorders of the Corpus Callosum (NODCC), if you haven't already. They sponsor research and networking among families. Though ACC is still considered rare, there's a lot more info out there now than there was 20 yrs ago.

[MrsFerguso]

Thank you for your beautiful video! I have a 13 year old son with ACC and, yes, the Absence is Present. How old is your son?