Family Representative Liaisons – Connections Across Thematic Areas

The Friends of NCBDDD believe Family-Professional Partnerships play an important role throughout the lifespan. For this reason, we are so excited to begin our important work with Professional Family Representative Liaisons who will work to enhance the mission and activities of the Friends of NCBDDD.   The mission of the NCBDDD is organized around 4 thematic areas and the Family Liaisons will work side by side with the organizational Champions in each thematic area.   Sometimes, the parent or family member is seen as only needed from birth through childhood, however there can be no doubt that the Family Partner is one that bridges the Lifespan.   Shifts in thinking introduced terms like Family- Centered care which “honors the strengths, cultures, traditions, and expertise that everyone brings to a respectful family-professional partnership.”[i]   The Family Liaisons are namely: (1) Saving babies through birth defects prevention and research: Sheri Romblad – Parent to Parent/Family Voices, CT; Shannon Kaiser –  Home First Family Support Coordinator, MA; and Kayte Thomas – Co-Founder, Medical Liaison, Director of Patient Advocacy, NC; (2) Helping children live their lives to the fullest by understanding developmental disabilities like autism: Jennifer S. Pineo – Family Voices, New Hampshire and Christy Sears – Family of Connection, South Carolina; (3) Protecting people and preventing complications of blood disorders: Aiyana Maat, Founder/CEO, B Intentional, LLC; (4) Improving the health of people with disabilities: Jeannette Mejias – Statewide Parent Advocacy Network of New Jersey and Marlyn Wells – Family Voices Program Coordinator, F2F, North Carolina. We look forward to their work with the champion organizations and are certain their work will enhance the mission and activities of the NCBDDD.

We are currently working to identify Family Representative Liaisons across the thematic areas. We would like to have several family contacts for each thematic area to serve as a sounding board for the organizational Champions as they are developing strategies during the year. This commitment would likely include participating in 3-4 short check in calls over the course of the year, as well as reviewing any materials that may be developed. If you have any leads or would like to volunteer for this opportunity, please contact Jennifer Bolden Pitre, Family Voices Program Coordinator, at

Family Representatives Thematic Areas Orientation

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