Welcome to the Friends of NCBDDD!

The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in identifying the causes of birth defects and developmental disabilities; helping children to develop and reach their full potential; and promoting health and well-being among people of all ages with disabilities, including blood disorders.

Announcements

 Listen to the Pediatric Emergency Preparedness Family Panel Discussion, March 2015  speaker-304215_640

Updated Budget Materials

Friends of NCBDDD 2015 Strategy Overview

This is our shared 2015 strategy for the Friends. This version reflects the input from our working groups and the Executive Committee. Keep the momentum going by thinking about ways that your organization can integrate these strategies into ongoing efforts already underway.

Friends of NCBDDD Workgroup Meeting

Many thanks to all who participated in our Friends of NCBDDD working meeting!  We made some terrific progress toward a shared 2015 strategy.  The Executive Committee met immediately following yesterday’s meeting to begin pulling together the draft work plan for the full coalition, based on each of our thematic area work groups. An updated work plan will be shared with the full Friends coalition in mid-December. View working meeting materials below:

Friends of NCBDDD Family Liaison Opportunity Awarded to Family Voices

The Friends of CDC’s National Center on Birth Defects and Developmental Disabilities is excited to announce that Family Voices has been selected as its Family Liaison.  The overarching purpose of this Family Liaison is to enhance the reach of the Friends of NCBDDD to families.  Family Voices will advise the Friends and contribute to educational strategies that enhance communication between families and key target audiences of the Friends of NCBDDD including policy makers, non-government organizations, and service providers.  Family Voices brings a national and state presence of family-led health promotion and service programs, as well as demonstrated experience in listening to and including the input of families in programs.  Family Voices will encourage involvement of family members, parents, and people living with a disability in Friends of NCBDDD activities in our four thematic focus areas.  Many thanks to the review panel, which included several members of the Executive Committee: Angela Blackwell, Roberta Carlin, Mary Andrus, and Patrick Johnson.

Congratulations to our New Champions – View current Champions!

Welcome to our New Family Representatives:

  • Saving babies through birth defects prevention and research:

Sheri Romblad – Parent to Parent/Family Voices, CT

Shannon Kaiser –  Home First Family Support Coordinator, MA

Kayte Thomas – Co-Founder, Medical Liaison, Director of Patient  Advocacy, NC

  • Helping children live their lives to the fullest by understanding developmental disabilities:

Jennifer S. Pineo – Family Voices, New Hampshire

Christy Sears – Family of Connection, South Carolina

  • Improving the health of people with disabilities:

Jeannette Mejias – Statewide Parent Advocacy Network of New Jersey

Marlyn Wells – Family Voices Program Coordinator, F2F, North Carolina

Family Representatives Thematic Areas Orientation

The Friends of NCBDDD Executive Committee is excited to report that they have collaborated with NCBDDD to develop four Friends focus areas:

Saving Babies through Birth Defects Research and PreventionSaving babies through birth defects prevention and research

Understanding Autism to Help Children Live to the FullestHelping children live to the fullest by understanding developmental disabilities like autism

Protecting People and Preventing Complications of Blood DisordersProtecting people and preventing complications of blood disorders

Improving the Health of People with DisabilitiesImproving the health of people with disabilities

The Executive Committee needs your help to serve as a Champion in one or more of the focus areas listed above. As a Champion, you would recruit Friends who have an interest in the particular focus areas as well as have the opportunity to provide content area expertise, join the newly formed Friends Communications Committee to coordinate messaging, and help tailor specific messages for key target audiences. The Executive Committee is looking for Friends that have expertise in communications, marketing, government relations, and family member experience. The time commitment would involve a 1 year term, with an option to renew for an additional year. It would also involve a monthly commitment of 1-2 hours, including joining the Communications Committee calls. Click here to read more about the specific responsibilities of a Champion.

Click here to view current Champions!

If you are interested in serving as a Champion, please contact the Friends Chair, Adriane Griffen at agriffen@aucd.org. It’s a great way to connect with the Executive Committee, NCBDDD, and other members of the Friends!

Recent News

NCBDDD Fiscal Year 2014 Annual Report Available
Download the report to find information about the Center’s budget, state funding, accomplishments, future directions and notable scientific publications.

Recent Webinars

Physical Activity is for Everybody

View the webinar

Uncovering the Power of Data: Disability and Health Data Systems (DHDS)

View the webinar

The Commit to Inclusion Campaign and the Guidelines to Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies Presentation

View the webinar

Growing Impact: An Overview of NCBDDD’s Strategic Health Initiatives

View the webinar

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