LOOK WHAT OTHERS ARE DOING FOR THE A.C.C. COMMUNITY TO HELP SPREAD AWARENESS?

Hello All Again,

When I first was told I have Agenesis of the Corpus Callosum, I had so many questions that went through my head.  The range of questions was all over the place. First off, I wanted to find out what the heck it was, and how did I get.  Then that led to asking, will it kill me?  Is there something I can take to cure myself?  What can I do for this to get better?  Who has this?  Does it get better?  Does it get worse?  Are there groups I can talk with to get through this?  The list went on and on.  There was a bit of a dawning that occurred at the same time, however.  That was the realization that my life was always a bit off, a bit strange, and very different from most.  This finally was the answer to those feelings and emotions.

I was shocked to learn a few things when I started doing my researching.  The first was that there isn’t much out there other than what is on Wikipedia.  Well, that was my first thought.  Yes, with diseases like breast cancer, or heart disease, the information they have and the research they are doing for it are much greater.  These diseases can be cured, unlike A.C.C. which are permanent.  You have it, and it wont get worse or better.

There was a couple of things that really helped me out, and I hope I can share them with you so they will help you out as well.  The first, I am sure most of you know already.  Facebook isn’t just games and sharing pictures and recipes.  There are many great groups out there composed of people like you and me with A.C.C.  You all have been a Godsend to me.  I appreciate everything you do.

The second great resource that I found was through my buddy Matt.  He told me about the University of Maine A.C.C.-istserv.  If you haven’t signed up for this yet, I implore you to do so.  I have included the link here.  umaine.edu/edhd/about/research/acc/networking-opportunities/  The book below has been invaluable to me as well.  I highly recommend picking one up.

ACC Book

http://www.amazon.com/Official-Patients-Sourcebook-Agenesis-Callosum/dp/0597835004/ref=sr_1_3?s=books&ie=UTF8&qid=1377788850&sr=1-3&keywords=agenesis+of+the+corpus+callosum

I want to get my hands on this book as well.  It is called A.C.C. and Me.  Oh wait, that is the title of this blog.  Does that mean I have to change my blog name?  I hear it is a great read for children with A.C.C.  The site is: https://www.nodcc.org/index.php?page=shop.product_details&flypage=&product_id=51&category_id=&option=com_virtuemart&Itemid=36

Also, the great people at the National Organization for Disorders of the Corpus Callosum cannot be left out of this post.  See you near Boston for the 2014 Conference.  Don’t forget to sign up.  That means you Kyle, and Rebecca.  Here is their site.  http://nodcc.org/

INSERT:

When I first posted this post, I mentioned this site from Brazil.  The A.C.C. was kicking in big time because I mentioned a name but it was the wrong person.  After reviewing the comments, I now have the right person. Her name is Alessandra Rigazzo and her sites are below.

http://www.aquesabeavida.blogspot.com.br/

http://www.centraldocorpocaloso.com

I hope this information is useful to you.  If you know of other resources, please let me know.  Until next time?

Brian Malaquias

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5 thoughts on “LOOK WHAT OTHERS ARE DOING FOR THE A.C.C. COMMUNITY TO HELP SPREAD AWARENESS?

  1. Rebecca

    How old were you when you found out you had ACC? My daughter who is 6 weeks old has it. I have been following your blogs since you started them. I love to hear how your life has been. I did read that you get disability for it. Should my daughter be getting disability? We are the beginnings of this whole journey.

    Reply
    1. brianmalaquiass Post author

      Good Afternoon Rebecca,

      I am delighted that you like my blog. I am 37 now. I found out I had A.C.C. about 4 to 5 years ago. The events leading up to that instant are very hard to think of. I will touch on that when I get to that in my multi-post blog, “My Life”. That may be the toughest blog I will write. Yes, I get disability. I just got it last month. It was a long time getting there. Over a year. I get it, because I can’t work due to A.C.C. I know disability is tough to get here in MA. I am not sure how it is in your area or state. I would definitely look into it. I know my friend, Rebecca works part time, but also gets disability benefits because of A.C.C. Can I have her email you? I am sure she can be of help as well. You may be friends with her on Facebook already.

      Reply

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