Genetic Contributions to the Developmental Journey

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A Conversation with the NYMAC Genetics Team and VA Genetic Navigators

Part I: September 5th @ 12 pm EST

Part II: October 3rd @ 12 pm EST

DESCRIPTION:

Some health issues can be caused by changes in our genes. Many of the medical "red flags" that cause a pediatrician to refer a child for genetic services overlap with developmental red flags. Early intervention professionals are trained to notice red flags during the first three years of development, and are therefore uniquely positioned to help families advocate for and navigate a genetic referral. Genetics providers help families learn whether genetic changes may explain the health conditions in their family and connect families with appropriate care. The Virginia Genetic Navigator program helps families of children or adults with disabilities or special health care needs more easily access and navigate genetic services by providing one-on-one support and connecting them with resources.

During our first session, we will review basic genetics concepts and discuss the overlap between developmental red flags and genetics red flags. During our second session, we will discuss current efforts to improve access to genetic services in Virginia and describe the VA Center for Family Involvement's Genetic Navigator program, and how the early intervention team can partner with Genetic Navigators to support families who are navigating the genetics system.

FACILITATED BY:

Radhika Sawh is a board-certified genetic counselor working in New York State. She earned a dual BS in Biology and Psychology from Boston College and a MS in Human Genetics from Sarah Lawrence College. Radhika is currently the Continental States Team Lead for NYMAC and also serves on the faculty of the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. Prior to joining NYMAC, Radhika worked in the clinical setting at a high volume prenatal center and in the non-profit sector as the National Director of Patient Services for the Cooley's Anemia Foundation. Radhika is passionate about outreach and advocacy, with a particular interest in hemoglobinopathies. 

Alissa Terry is a board-certified Genetic Counselor in New York State and has been working with the federally funded New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Network for the past 6 years. Currently, Alissa serves as the Project Manager and Telegenetics Navigator for NYMAC. Alissa received her BA in Biology from Cornell University, and her ScM in Genetic Counseling from Johns Hopkins University. Alissa has worked in various capacities for the Genetic Counseling Program at the Ferre Institute since 2006.

Lisa Richard is the Southwest Regional Network Coordinator and the Rural Outreach Specialist at the Center for Family Involvement at Virginia Commonwealth University. She supports caregivers and families living with disability across the lifespan in southwest and rural Virginia. She is the parent to seven children including two adult children with intellectual disabilities and has lived experience navigating disability systems in rural communities.

Dana Yarbrough, M.S., M.A., is the associate director of the Partnership for People with Disabilities, Virginia's university center for excellence in developmental disabilities located at Virginia Commonwealth University. Among her many roles at VCU, Dana directs the Center for Family Involvement and its programs to support the leadership of diverse families of children with disabilities. Dana is the mother of a 29-year-old daughter who in spite of significant support needs for physical, intellectual and sensory disabilities owns her own dog boarding business.