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NODCC NEWSLETTER 
2012

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

 [email protected]

714-747-0063   

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Our bank jugs are a perfect way to save for your annual NODCC membership.

 

Make it a fun, family project! 

Collect loose change from pockets and purses, look between the sofa cushions and car seats, pick up those pennies on the sidewalk!

 

If you need a savings jug, please email the Central Office.

 

 

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Happy Thanksgiving

Greetings!

 

We all have much to be thankful for as Thanksgiving Day draws near. At NODCC we are grateful for the many families that we have the opportunity to serve and the amazing donors that allow us to help change lives.

 

This year's Fall Fundraiser has been an amazing success. With just 2 weeks left to go we have almost reached our goal of $25,000. Thank you to all who have joined us this journey for the last 2 months. We could not do it without you!

  

Today I have the privilege to share a special story about Taylor Gurry and her family.

 

http://thegurrys.wordpress.com/

 

The Gurry's are indeed a gift to us all. Please take a moment to read about their journey, and please consider a gift to the NODCC this holiday season.

 

Your generous support will help change the lives of so many just like Taylor.

 

Thank you and Happy Holidays,

 

Barbara Fonseca

 

 

 

BOREALIS PRESS FUNDRAISER
Borealis Press PhotoWe'd like to tell you about a wonderful new way for the NODCC to earn income.

Borealis Press
, which makes funny and true greeting cards and other gifts, has agreed to donate 10% of purchases made in 2012 using the NODCC's special code on their website.

(The Borealis Press vice-president has a family member living with a DCC and is a former NODCC board member.)

We think you will enjoy just looking through the
website. If you find something that you like, we're thrilled to get the income. There is nothing else that you or we have to do!

What better way to get your birthday, mother's day, congratulations, thank you, get well, or just plain Hi There! cards?

 

Here's the link make sure you use the code NODCC12.

And, feel free to share the code with your family and friends, which will help us even more.
 
We sincerely appreciate all your support!

DCC RESEARCH NEWS

  CNS 2012 The NODCC recently displayed at the Child Neurology Society Meeting in Huntington Beach, CA. The event was attended by over 800 doctors and nurses who work in pediatric neurology. It was wonderful to see how many professionals were interested and appreciative that there is an organization to which they can refer families for support. 

 

CALL FOR RESEARCH PARTICIPANTS   

A research study at The University of Texas at Tyler is seeking educators (teachers, therapists, specialists) and/or parents/caregivers of children diagnosed with Agenesis of the Corpus Callosum (ACC) who are at least 18 years of age. The purpose of this research study is an attempt to obtain data on individuals who have been diagnosed with ACC in order to recognize academic and social interventions that are currently working for these children within the classroom setting. Your participation in this research will provide additional information to parents and to individuals who work with children in educational settings.

For more information, please contact Dr. Julie Delello at [email protected]    

If you are an educator and would like to participate http://uttyler.qualtrics.com/SE/?SID=SV_ehAhBe7760ga6Wg 

If you are a parent and would like to participate

http://uttyler.qualtrics.com/SE/?SID=SV_bxqZoaid7g0t3uI 


Project Closing Date: March 2, 2012

RESOURCES

NODCC Website


Our DCC Resource Center is a great source for information about educational issues as well as other topics. Lecture notes and podcasts from our past conferences are available thanks to the many researchers and professionals who have given of their time and expertise.

 

Topics of interest include

Accessing Social & Educational Services

Apraxia: Challenges & Treatment

High School Educational Strategies

Speech and Language Skills: Inflections, Social Cues, Pragmatics & Body Language

Developing Self-Esteem and Social Skills for ages 5 - 12

Telling Your Child, Silblings and Classmates about DCC

Maximizing Your IEP

And many more! NODCC DCC Resource Center
 

Other Websites of Interest
 

RareArtist.org is a free, online art gallery for individuals with rare disorders of all types to display their artwork and allow others to view their artistic expression. According to the Kakkis Everylife Foundation, who created the website, "Art is an expressive medium that we all use when capturing the trials and triumphs of our human existence.... [and] can be a particularly powerful medium to guide us all, in our struggles and successes." To view the gallery, upload your own art, and learn more about their annual Art Contest, visit their Website

Pacer Center for National Bullying Prevention
is a parent training and information centerfor families of children and youth with all disabilities from birth through 21 years old. According to their website: "PACER's National Bullying Prevention Center provides creative and interactive resources that are designed to benefit all students, including students with disabilities." Visit their website or ideas on how to take action against bullying for Elementary School Children and for Teens


NICHCY
the National Dissemination Center for Children with Disabilities contains a wealth of information, downloadable fact sheets and resources on disability-related topics, including educational law and research based educational practices.