Monday, May 7, 2012

ACC ADULTS - e-mail support group

The ACC Adults e-mail group is now available to any Adult with ACC who might have an interest and want to join.

Are you an adult with Agenesis of the Corpus Callosum?

Would you like to connect with other adults who have ACC and share in discussions and topics that pertain to living life as an adult with ACC?

I invite you to join the ACC Adults e-mail group.

From time-to-time I am contacted (through this Agenesis Corpus Callosum Blog) by adults who have ACC who are looking to connect and have contact with other adults who have ACC, who can relate to them.

I usually suggest the ACC Listserv e-mail support group, which is for everyone who has an interest in ACC--(parents of a child with ACC, adults with ACC, caregivers, grandparents, family members, professionals).

I also suggest the National Organization for Disorders of the Corpus Callosum (NODCC) because they offer an "Adults with DCC Program" (Note: you must join the NODCC to access their adult program).

Sometimes though, there are some adults who seem to be looking for a location where they can easily find and connect with other adults who have ACC to share their thoughts and feelings about living life as an adult who has ACC. I wanted to address that issue and try to create an avenue. So that is why I decided to create the ACC Adults e-mail group.  This group was created to help you find and connect with other Adults who have ACC (or a corpus callosum disorder) for the purposes of networking, discussions and support.

ACC-Adults began on May 1, 2012 and I'm excited to tell you that so far there are several new members, and it is being filled with lots of new messages.

Hopefully the group will continue to grow and will become an active and helpful place for private discussions and support between adults who have Agenesis of the Corpus Callosum.

All adults with ACC are welcome to
join the ACC Adults group and read what the other adults who have ACC are posting in the group. Then, you can choose to reply to the messages, or you can post a new message, regarding a topic of your choice, and have an opportunity to interact with other adults who have ACC.

There is an "Introductions" message in the ACC-Adults group so you can reply, tell a little bit about yourself (for the other adults with ACC members to read), and you can also post a link to your blog and/or your Facebook page, if you like.

In order to stop spammers from joining the ACC Adults group and posting spam/junk mail messages, there is an approval for new ACC Adult members who join.

The ACC Adults 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 the ACC-Adults group will be able to view and respond to the messages.

I believe that it is extremely important to bring about awareness of other ACC support group options that are available for adults who have ACC because people differ in terms of the type of ACC group that best fits their particular needs and their comfort level.

It can also be nice to have a few options to choose from. Plus, having a variety of support group choices can aid in helping you make additional contacts with more adults who have ACC and offers even more opportunities for networking, socializing and support.


NODCC - "Adults with DCC Program"

The National Organization for Disorders of the Corpus Callosum states: "The goal of this program is facilitating social connections and social support between adults who have DCC." If you would like to participate in the Adults with DCC Discussion Board, you need to fill out their application and you are required to be a member of the NODCC. This Program is a private discussion board that is only for approved "Adults with DCC"

ACC-Listserv e-mail support group

The ACC Listserv is the largest and most active ACC group with hundreds of people from all around the world who have an interest in ACC (or a corpus callosum disorder). They discuss a wide variety of topics dealing with ACC. The group consists of many parents who have a child with ACC, adults who have ACC, grandparents, family members, and others. You can post a note with your questions, concerns, or anything that you would like to discuss about ACC and you are sure to receive input, suggestions, advice and help. Everyone is welcome to join. Adults with ACC who contribute information in this group offer so much hope to so many parents who have a child with ACC.

Please be advised that I was recently informed by Sarah M., an adult who has ACC, that there are indeed some other Adults with ACC groups. I will share with you the information she provided...

Sarah wrote:

"There are many groups for Adults with ACC, we have a Yahoo Chat every month or so (can be found on facebook, "ACC WEB CHAT", for adults with ACC only. Also there is a "Young Adults and Adults with a DCC" group as well. Both groups are very active, and run by adults with a DCC. There is also a program through the NODCC for Adults with a DCC. Adults with a DCC (ACC) are also active on the listserv, as well as the other facebook groups. If anyone has any questions or if an adult with a DCC has questions about getting involved feel free to find me on facebook "Sarah R. Mellnik" or email me back here at"

I asked Sarah for direct links to the Adults with ACC Facebook groups she mentioned (because I don't use Facebook - but wanted to provide the links here for easy access to anyone who might be interested).

Sarah replied:

"The groups can be found by typing in "ACC WEB CHAT" or "Young Adults and Adults with DCC". I dont have the links to them. We are always excited to welcome new adults with a DCC."

UPDATE (new info)

Sarah wrote, (after this post was published):

"I found out how to get the links to other groups with a DCC. So here they are,

Young Adults and Adults with DCC:

ACC Web Chat (Facebook group but we chat in yahoo conference chat):

...if you don't have facebook and would still like to check out the chat on yahoo just let me know and I'll get ya the info."

Sarah also wrote:

"We connect at the conferences and then throughout the year we connect via facebook, and webchats. Facebook is probably the best way for any new adult with a DCC to connect with the rest of us."

Hopefully, these different ACC Adult support groups mentioned will bring about greater awareness of the options available, and will offer Adults who have Agenesis of the Corpus Callosum the opportunity to explore one or more avenues to find other Adults who have ACC and connect with each other in meaningful, positive ways.

Join ACC Adults e-mail group (for Adults who have ACC)

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