DCC Resources
To send or not to send - that is the burning question as we approach the end of summer 2020. The novel coronavirus has cast a shadow over numerous traditions and day-to-day activities, especially for families who have school-age kids with special needs. In-person instruction is coupled with fear about contracting and spreading the virus. Online learning and homeschooling is fraught with anxiety about how IEP services, supports, and therapies will be provided to prevent skill regression.

These are extraordinary times, and families are being forced to make quick decisions on whether to send students back to school this fall. While many decisions may be outside of our control, it can be helpful to focus on things that are within our scope of control. Below are a few recent articles with tips and suggestions from various professionals that may give you some food-for-thought while weighing these important, upcoming decisions.

The NODCC recognizes the difficult decisions that families with school-age children are currently facing. Know that we are here to support you along the way as you determine what is best for your family. 


Board of Directors News
Please help us welcome Katherine Claxton and Ashley Vaillancourt to the NODCC Board of Directors. Also rejoining the board and serving on the Scientific Advisory Board is Dr. Elliott Sherr. If you are interested in volunteering with the NODCC on a committee or applying for a Board position, please visit the Volunteer page on our website: https://nodcc.org/get-involved/volunteer/ .


Katherine Claxton is a Licensed Clinical Social Worker with 18 years of experience working in a healthcare setting. She received her bachelor’s degree in social work from Baylor University and her master’s degree in social work from the University of Texas at Austin. Katherine currently works in private practice part time, providing psychotherapy to older adults on site at their place of residence. Katherine and her husband Dean reside in Irvine, CA with their two children: Charlotte (age 8) and Joshua (age 6). Joshua was diagnosed with hypoplasia of the corpus callosum when he was 19 months old after several delayed developmental milestones, prompting the family to become connected with the NODCC for resources and support. Katherine brings to the board her professional experience in the healthcare system, her passion for the needs of neurotypical siblings, and her unique perspective as a primary caregiver to someone with a disorder of the corpus callosum.


Ashley Vaillancourt has been involved with the NODCC since 2013 and currently serves as the Conference Adult Program Moderator. She has M.A.'s in Psychology and Intercultural Studies, and a Ph.D. in Clinical Psychology from Fuller Graduate School of Psychology. She served as a researcher investigating psychosocial outcomes of disorders of the corpus callosum. Ashley has dedicated her career to working with individuals with neurological or medical injuries, illness, or disabilities. She is currently completing her post-doctoral residency specializing in Neurorehabilitation. She lives in Los Angeles with her husband, Orlando.


Elliott Sherr, M.D., Ph.D.  is a professor of Neurology, Pediatrics, and Human Genetics at the University of California, San Francisco. He is a board-certified Neurologist with special qualifications in Child Neurology and has, for nearly two decades, cared for a range of children with neurodevelopmental disorders including autism, epilepsy, and children with malformations of brain development including agenesis of the corpus callosum. He has worked with the NODCC since 2003, serving on the Board and on the Scientific Advisory Board. Dr. Sherr directs a fetal neurology program at UCSF where he provides guidance to families expecting a child with a DCC. In addition to Dr. Sherr’s extensive clinical work, he runs a research group that studies the genetics of DCC.

Family Highlight: Meet the Showmaker Family

Hello! We are happy to introduce ourselves to the NODCC family. We are Lindsay, Jeff, Thomas, and Caden from Bucks County, Pennsylvania. Caden, the youngest of the family, is 1 year old and has complete agenesis of the corpus callosum.
 
We first found out Caden had enlarged ventricles at our 20 week anatomy scan. During our follow up scan, the ventricles increased and I was sent to an MFM. That's where they couldn't see the corpus callosum or cavum septum. We were then sent to Children’s Hospital of Philadelphia (CHOP) to confirm. Caden was diagnosed with CACC, severe ventriculomegaly, colpocephaly, a large midline cyst and other structural abnormalities in the right hemisphere. We went to CHOP weekly to keep an eye on development and delivered Caden there at 37 weeks.

Caden has had slight delays with adaptive motor skills. However, during a recent evaluation for early intervention, he did an amazing job! He is such a happy, social baby. He loves playing and being silly. His big brother has been teaching him animal sounds and how to identify his body parts. Our hope for Caden is that he stays his content little self. We will raise him just as we have raised his big brother, knowing he can accomplish whatever he sets his mind to. Having ACC mak es Caden who he is, we wouldn't change a thing about him!
Here are the latest opportunities to get involved with the NODCC community.










DCC Awareness Day
We were overwhelmed with the stories and engagement for DCC Awareness Day on July 2, and we know many people are continuing to educate others and share stories this month. We loved seeing the photos and videos as well as all the fun ways families were raising awareness on their own social networks and in local communities. Individuals and families secured local news stories, city proclamations and wrote blogs and articles. Thanks to the engagement and sharing from those in our community, our Facebook post on July 2 reached more than 53,000 people. 

Regional and Community Gatherings
The NODCC will be hosting virtual gatherings via Zoom in the coming weeks. More information will be shared on our website with reminders on social media (Facebook and Twitter).

Topic: NODCC New York
Time: Jul 25, 2020 02:00 PM Eastern Time (US and Canada)

Join Zoom Meeting

Meeting ID: 213 943 2337
Passcode: 12345678

Topic: NODCC Adults with DCC
Time: Jul 25, 2020 08:00 PM Eastern Time (US and Canada)

Join Zoom Meeting

Meeting ID: 213 943 2337
Passcode: 12345678

Conference News
We are planning for the DCC Conference June 25-27, 2021 in Frisco, Texas. Please stay tuned for more information on early conference registration and payment plan options that will begin in August.



Fundraisers

A special thank you to the individuals and businesses who conducted fundraisers for DCC Awareness Day (and those who have fundraisers still in progress)! Skeleton Key Brewery in Illinois conducted a fundraiser on behalf of their niece, Nora, who has agenesis of the corpus callosum. The brewery donated $1 from the purchase of a pint or growler of “Nora’s Grace” IPA to the NODCC earlier this month. We are grateful to the businesses who creatively raise funds for our organization to support family and friends living with the conditions.

Amazon Smile
Did you know that your regular Amazon purchases can help raise money for the NODCC? It's a donation opportunity provided through AmazonSmile. Help the NODCC and encourage your friends and family to list the NODCC as the preferred charity on your Amazon accounts. Start contributing today and add the NODCC to your AmazonSmile. Your quick click here makes a big difference!

Facebook Fundraisers
Fundraising for charities on Facebook is an easy way to help raise money for the NODCC. Simply click on the “Support Nonprofit” option when creating a new Facebook post and select the NODCC as the recipient. Birthdays, memorials, remembrances, and celebrations are great events to encourage giving from your family and friends.

Looking for other ways to support? The NODCC is searching for sponsors and partners who want to support our organization. We encourage all readers of the newsletter to send company names or potential company contact information to info@nodcc.org

Donate to keep our community thriving!



Contact Us
(714) 747-0063  info@nodcc.org  nodcc.org