NODCC Newsletter 
 February
 2015 

Thank you for your support of the NODCC! Our mission is "to enhance the quality of life and promote opportunities for individuals with a disorder of the corpus callosum and to raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking."

How to contact the NODCC Central Office

Quick Links

SEND US YOUR PHOTOS             TO SHARE!                                 [email protected]       


 

The NODCC is much more than just the bi-annual conference.  It is typically the first place newly diagnosed families go for information.  In addition, the organization helps families connect with each other, with researchers and with professionals all around the country.  The NODCC publishes material like the information packet to newly diagnosed families and the ACC & Me book.  These services and many other supports don't happen by themselves.  There is a dedicated and selfless team that works behind the scenes to make these offerings available.  This team is the NODCC Board of Directors and committee members.  We are looking for volunteers who are interested in supporting the efforts of the organization to participate on the Board and/or on the various committees.  If you are interested in helping and would like more information please contact us.  You can call the office at (714) 747-0063 or email to [email protected].

 

Welcome New Board Members!


 

Steve Jenkins

Steve Jenkins and his wife, Wendy, live in Germantown, TN, a suburb of Memphis. Steve and Wendy are the parents of Payton, Noah and Sutton. Noah was diagnosed with partial agenesis of the corpus callosum at 5 years of age. Steve is Staff Vice President in the Business Improvement Group of Anthem, Inc.. He has spent the majority of his career in the Medicaid industry. Steve is originally from Oxford, MS and received his BA in Psychology at the University of Mississippi. He also holds an MBA from Union University. Steve, Wendy and Noah attended their first NODCC conference in Boston in 2014. Almost immediately, Steve felt drawn to participate more fully in the organization, and is honored and humbled to be given the opportunity to serve as a member of the Board of Directors. Both Steve and Wendy see the NODCC and its members as an incredible source of support for their family, and hope their participation helps further the organization's mission "to enhance the quality of life and promote opportunities" for Noah and others with a DCC by "raising the profile, understanding and acceptance of these disorders through research, education, advocacy and networking".


 

David O'Brien

 David and MaryLee O'Brien, reside in beautiful, Lake Forest, California and are the proud parents of Connor (age 12), Kathryn (age 10), and Logan (5 �).  Connor was diagnosed with complete agenesis of the Corpus Callosum while still in Utero.  Finding an overall lack of awareness and understanding of Connor's condition within their surrounding medical community, David and MaryLee sought out and joined the NODCC a little over 3 years ago.  Attending the San Antonio and, most recently, Boston conferences had a tremendous impact on Dave; prompting him to step up and join the Board of Directors.

 

David is originally from Staten Island, New York and has worked as a Vice President at a global investment bank in NYC.  For the past 18 years he has been in the "IT" field, and is currently the Global Executive Director for a large medical device manufacturer.  David holds degrees in Business Administration, Computer Science, and earned his MBA from Pace University.  He also currently serves on the editorial board of SupportWorld magazine and was recently recognized by Computerworld magazine as one of its Premier 100 leaders.  In his spare time David assists Connor along his Boy Scouts journey, Logan in T-ball, and daughter Kathryn with whatever she wants (that's another story).

 

February 14th 

Loving Someone with Special Attributes

  

As Valentine's Day approaches and we think of those special people in our lives, what comes to mind for you?  I believe it is safe to say we are all on an incredible journey.  We have many people in our lives that we love on different levels: our spouses, our children, our friends.  But, what does it mean to love someone with special attributes?  It means commitment, unconditional love, endless patience, and deep understanding.  It means finding beauty in who they are rather than focusing on what they don't have.   As we look forward to celebrating February 14th, remember that the person with special attributes in your life is a gift.  They will teach you how to love unconditionally.  They will teach you how to sacrifice without a second thought.  They will show you what true grace is all about.  They show us how to find joy and excitement in the little things.   As we travel this journey of "special needs" together, let's take a moment every now and then to put the difficult times aside and absorb the blessing our loved ones with special attributes brings to our families.    Let's not forget our special needs community.  Through the NODCC we have a community of people who understand the difficult journey, navigating life with a neurological disability.  Let's be thankful and celebrate being part of a community where others understand what you are going through.  The more we pull together, the stronger we will be.

 

February is Rare Brain Disorder Awareness Month 

 

There are a lot of things to celebrate in February.  Valentine's Day, Ground Hog's Day, Love your Library Day, and Rare Brain Disorder Day (Feb. 28th).   Below is the link to National Institute of Neurological Disorders and Stroke.  Sift through the site.  You might find something helpful to you.

http://www.ninds.nih.gov/funding/areas/neurogenetics/index.htm


This Months Apps!


 

Piikki-available on iTune for iPhone and iPad ($3.99) This app allows you to take photos of receipts and email them to yourself so that you can digitize and organize them.

 

Fireworks!-available on iTunes ($1.99) by miSoftware.  This app has background photos and music. This app can mesmerize and sooth a child with sensory needs.

 

QuickCues:  for teens and young adults to learn to use social scripts in everyday situations, also has tips on reading body language ($4.99)

 

iPrompts:  for parents to create visual schedules, also includes a countdown timer and choice prompts with images to help with behavior management ($49.99)

Laws & Links


 

This article, "Efforts Underway to Fully Fund IDEA,"  shares information about the increased funding that is proposed for special education.

http://www.disabilityscoop.com/2015/01/28/efforts-fully-fund-idea/20002/

 

The article "In Practice, IDEA Remedies May Not Be Available to All" shares thoughts about how lower income families don't have the same opportunities to safeguards pertaining to special education as those families that have higher incomes.

http://www.disabilityscoop.com/2015/01/14/in-practice-idea-remedies/19963/
2015 Regional Gatherings and
2016 NODCC Conference


Plans being made for a Texas family gathering in June 2015. Click on the link below for additional information.

We have heard from families in Washington, New York and Southern California who would like to have a regional gathering in 2015. As soon as we have additional information we will pass it on to you. If you are interested in organizing a gathering in your area please contact Barbara at [email protected] and she will help get you started!

2016 NODCC Conference

We are very excited that plans for the 2016 DCC Conference are under way. If you are in the Chicago area and would like to join our Conference Team please contact Barbara Fonseca at [email protected].

Mark your calendars now to attend the NODCC's Disorders of the Corpus Callosum Conference in July 22-24, 2016! More details to come!