News from the NODCC
NODCC Board of Directors Update: New Officers and Members

Last month, the NODCC held its biannual meeting of the Board of Directors electing new officers and new Board members.

2021-2023 Board Officers:
Kevin Hight, President
Kim Manning, Vice President
Susan Fay, Secretary
Natalie Erb, Treasurer

2021 Committee Chairs:
Communication: Mike Molettiere
Community: Kathe Gee
Development: Kevin Hight
Governance: Al Cordasco
Nominating: Kim Manning

We welcomed six new members to the Board this year: Natalie Erb, MaryLee O’Brien, Mike Molettiere, Kip Oren, Layton Shaffner and Heather Will. We would like to acknowledge and thank our outgoing Board members: David Erb, David O’Brien, Kim Oren, Jessica Owens, and Lynn Snyder. Special thanks to Lynn Snyder for serving an extended term as President the past three years. We are grateful for the time and financial commitments that all these volunteers make to serve on our Board of Directors.

If you are interested in getting more involved with the NODCC, see our volunteer page for committee opportunities and Board requirements: https://nodcc.org/get-involved/volunteer/
Read about the current Board members on our website (new members coming shortly): https://nodcc.org/about-us/board-of-directors/

Proud to be Rare!

Rare Disease Day is February 28! While disorders of the corpus callosum (DCC) are not diseases or illnesses that can be cured, they are rare brain conditions that must be learned to live with. The 300 million people living with a rare disease around the world and their families face common challenges in their daily lives. As a vulnerable and neglected population, they are disproportionally affected by stigma, discrimination, and social marginalization, within their social environment as well as society at large. People living with a rare disease also face discrimination at work, school, and leisure.

Rare Disease Day was created by EURORDIS and its Council of National Alliances in 2008 and is acknowledged and celebrated in over 100 countries. Along with National Organization for Rare Disorders (NORD), the NODCC joins global organizations in this moment to show our strength in community. Join us on Facebook and Instagram on February 28 for information and graphics to share with your networks.

On this day, we’ll celebrate the fierce support, kindness and understanding that we have found in our community of individuals, families, caregivers and more who are connected to those living with DCC. Alone we are rare, together we are strong!

Click here, to watch this year’s #RareDiseaseDay video with six people from all over the world living with rare conditions and how being part of the rare community is special. https://www.youtube.com/watch?v=3bxaP9FJKnk&feature=emb_logo

Click here for the #RareDiseaseDay zebra coloring page “Together We are Strong.”
Adult story

On the blog in our Adults with DCC, meet Jamie, a preschool teacher who works with kids with autism. Jamie was unexpectedly diagnosed with agenesis of the corpus callosum (ACC) two years ago at age 28. Read the story to see how Jamie lives her life to shine a light on differences and is passionate about working with children.

UCSF Brain Development Research Program Accepting New Study Participants

The University of California, San Francisco Brain Development Research Program (BDRP) is in the process of enrolling new study participants. For the new year, the lab is focusing on several goals:
·       Determining the genetic causes behind agenesis of the corpus callosum (ACC) and other brain malformations
·       Understanding the issues people with brain malformations are likely to face, and
·       Developing new therapies

As a part of the study, you will receive annual updates about on research progress and the lab will complete gene sequencing to share with your geneticist. Since this is just for research, genetic testing results would not be directly shared with you. However, you will be notified once your genetic testing is completed and results and analysis will be discussed with your geneticist/primary physician to provide the right diagnosis and treatment.

The BDRP anticipates completing its next cohort’s sequencing in Spring 2021 (subject to change due to COVID-related regulations). Signed consent forms, a copy of a brain MRI, a completed enrollment packet, and genetic saliva samples from you/your child and the parent(s) are required.

If you are interested in the study, complete the first steps of the lab’s intake form to see if you are eligible for the study: https://redcap.ucsf.edu/surveys/?s=e5zvYW. You may also find more information by emailing research coordinator Kendall Parks at kendall.parks@ucsf.edu or reviewing the website: http://brain.ucsf.edu/disorders-cerebral-development.
Here are the latest opportunities to get involved with the NODCC community.
Connecting our DCC Community through Virtual Sessions

The virtual call schedule for February and March is now available. Stay tuned as we confirm additional session dates in March and the coming months. Full session descriptions and registration links for each call can be found on our blog: https://nodcc.org/connecting-our-dcc-community-through-virtual-sessions/

Upcoming Community Calls:
February 20: Parents of Newborns
February 24: Music Therapy and Disorders of the Corpus Callosum
February 27: Siblings (10-15): Living with a brother/sister with DCC
February 27: Dealing with loss: infant and newborn age
March 13: Occupational Therapy
March 20: Adults with DCC
March 20: Teens with DCC
March 27: Parents of Preschoolers

If you would like to suggest a topic for a virtual session, please contact our Community Committee at community@nodcc.org.
Fundraisers & Donations

Matching Gifts:
​Don’t forget to check for matching funds from your employer. Many companies have matching gift programs that will equal or exceed employees’ charitable donation amounts.

A great example is from Tom Gee:
The Corning Foundation is a great way for eligible Corning Incorporated employees and directors to make donations to non-profit organizations, and their donations are matched by the Foundation 1:1.

If you or a family member work for Corning you can have your donation to the NODCC matched!


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!

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