NODCC and the ACC network

Agenesis of Corpus Callosum
#1

If you seach your computer for either of these two organizations you will come to sites with great information. The NODCC is a non-profit orgaization that was formed only a few years ago. They hold a yearly conference for families and individuals with ACC or other disorders of the corpus callosum. They also instigate research and have professionals to help answer questions. A great resoruce!
The next site is the ACC network. This is the original network and has been running for a while now. It is housed out of the University a Maine and often helps parents gather information. They send out newsletters and information packets if you are on their mailing list.
Check them out and maybe I’ll see you in Dallas this summer. We can’t wait!

Crystal

#2

In the past I found both these groups to be mouthpieces for matt levi and the schillmollers, and to be nasty, unfriendly, unhelpful, and uninclusive. Just my experience, but as a low income single mom and a Jew (hey these guys intentionally scheduled a conference on a major Festival despite being asked to take it into consideration…) I would not give them the time of day.

Jane in MN

#3

I have to agree with you on most parts. The families on the list serv are
awesome resources but the organizations themselves have served no purpose
for us thus far…I haven’t been to the conference because I’ve heard
about them I didn’t feel like it was worth the money.
Amy
----- Original Message -----
From: “rafismom” agenesiscc-cpt3124@lists.careplace.com
To: tknbychance@verizon.net
Sent: Wednesday, May 09, 2007 11:00 AM
Subject: Re: [agenesiscc] NODCC and the ACC network

#4

IMO the ACC Kids group on Yahoo is far more useful and friendly than the other orgs or their Board, for which I now understand they wnat to CHARGE PARTICIPANTS MONEY.

Jane in MN

#5

I LOVE the Acckids group on yahoo!!! I only recently rejoined the ACC-L
network’s online list. Not very active on their. But the ACCkids group I am.
I cannot believe they have the nerve to charge families to become a member
or charge families to go to the conferences. If they are truly parents of
children like ours then they should understand the financial
responsibilities that come along with caring for a special needs child. I’m
sorry but $100+ is outrageous to pay to go to a conference. They shouldn’t
have to pay the doctors to speak at these either.
----- Original Message -----
From: “rafismom” agenesiscc-cpt3124@lists.careplace.com
To: tknbychance@verizon.net
Sent: Wednesday, May 09, 2007 2:48 PM
Subject: Re: [agenesiscc] NODCC and the ACC network

#6

Hey I went to one of the congrences is Madison WI. I felt that thay talked about the condition but didnt offer any advice. A stayed for a Autism class and all it was is a bunch of statistic about acc and autism, I was looking for a explation of the link or why mabey her behaviors we like a autisic child. I would be alot better to just invited the parents and have them have a big open discisson about what works for them and what hasnt. Well that is my opinion thanks for reading

#7

I absolutely agree with the last poster. And, BTW, there was some research published out of Uni. of Iowa in 1997 (!) that indicated a significant percentage of folks diagnosed autistic that they did MRIs on , actually had corpus callosum and cerebellar issues…does not surprise me as the coordination issues in both are similar. I found this on the internet but conveniently the NODCC folks do not seem to have noticed it.

Also, I have aspergers myself, a HF form of autism so I have little patience for people who are negative about Autism!!!

Jane, Rafi’s mom in MN

#8

I for one have found the NODCC and the ACC Network a life saver for myself and other families who find out and are in the dark. I have had nothing but positive experiences at the conferences. The ACC Network is what started all of this in the beginning. This condition is still unknown to most of the world, and it is still being researched to better understand all of its tweaks. There are so many different types of DCC that I can understand the difficulty in meeting everyone’s needs, but they sure do a good job at it in my opinion.

The conferences cost money, but for me it is well worth the time and the money, being someone with ACC it is crucial to me that I meet others with my condition. I walk into every conference I go to and I immediatly say “I’M HOME”. The experiences and memories I walk away with from that conference are great and heartwarming.

I am sorry that there are those of you who feel so strongly that these organizations are doing you wrong. I can tell you thats not their intent at all, they are giving their time to help better the lives of those with ACC and those who are affected by ACC, and I am truely greatful.

#9

My child was just diagnosed with C-ACC. At first I was in the dark totaly. There is not enough information out there. Being part of this discussion board and I am now a member of NODCC ORG. my anxiety is lifting. I will be attending the conference this year with my husband if anything to gain mor e knowledge and meet people in our same situation. I am sure the NODCC has to charge membership just to be able to keep up with everything that they are doing. Have you checked them out lately ? They are expanding there resources and education sites. Also to have a conference of this size year after year is very costly. I am happy someone is doing it. If you belong to a church or any affiliation there are dues what’s the diffference someones got to pay for it. So I say quit gripping and be appreciative we have such resources. We have enough to deal with !!

#10

I will be away from Dayton Children’s until Tuesday, April 22. Please
contact Tami Wiggins for urgent issues at ext. 4214. Thank you. Jodi

agenesiscc-cpt3124 04/19/08 13:50 >>>

#11

i personally can say the conferance is well worth it i found out i had C-ACC when i was 24 yrs old and meeting other kids and adults with the same thing was awesome i did not feel alone anymore plus i learned alot in the seminars and my mom and sister who went with me got a lot out of it as well

#12

Winnie, how and why did you find out? (if that is not too personal a question).

Winnie31508 agenesiscc-cpt3124@lists.careplace.com wrote:

#13

i was at work on day and i got very dizzy and felt like i was going faint i also got the feeling i used to have when i was a kid before i had a seizure so i went to the doctor who then sent me to the hospital to have a cat scan done and that showed that i had an abnormality in my brain so then an MRI was scheduled and i discovered the C-ACC

#14

wow, that must have been quite a shock. do you think seizures as a kid was part of that, and did you grow out of them? I too am curious about your experiences with A-CC - I have a two year old and I am wondering what living with A-CC is going to be like for her, and the ways in which I might help her cope.

Jen

Winnie31508 agenesiscc-cpt3124@lists.careplace.com wrote:

#15

they tell me that the seizures are b/c of the acc and i did out grow them i was weaned off meds when i was 14 but started having mild seizures again at 24 they put me on meds just to be on the safe side but i have not had a seizure since before my daughter was born
yes it ws kind of a shock on one hand i was not suprised b/c I always felt like there was something else that made me differant from other kids but i have to admit i was angry at first growing up all i wanted was to be like the other kids to fit in and i new i didn’t on the outside i seemed normal but i new there was something and i was right at that point i was not finding much about acc but once i did i was nice knowing i was not alone

#16

thanks for sharing your story Winnie,

Winnie31508 agenesiscc-cpt3124@lists.careplace.com wrote:

#17

How can I find a NODCC 2011 regional conference in my area?