Congenital CMV: Blending Education with Lived Experience

Workshop description

This presentation will provide an overview of congenital cytomegalovirus (CMV), including its impact on hearing, vision, development, and family experiences. Participants will learn about Minnesota's newborn screening efforts, the importance of ongoing monitoring and early intervention services, and considerations for documenting CMV within IFSPs and IEPs to support appropriate educational planning and services. The presentation will also highlight collaborative, family-centered practices that support children with CMV and their families.

Presented by Kathleen Smith and Jess Moen. 

Kathleen Smith

Kathleen Smith is a Deaf advocate, educator, and a leader in congenital CMV awareness from Minnesota. Born with congenital cytomegalovirus (CMV) in 1980, Kathleen dedicated her life to increasing awareness about CMV, deafness, accessibility, and early intervention. She currently serves as the Minnesota CMV Community Alliance Chair through the National CMV Foundation and as President of the Minnesota Association of Deaf Citizens. Kathleen has presented at conferences, workshops, and community events on topics related to congenital CMV, lived experience, Deaf culture, and advocacy. She also works as a DeafBlind Intervener at Metro Deaf School in St. Paul, Minnesota. Her upcoming memoir, Through Their Eyes and Mine: A Story of CMV, Deafness, and Hope, shares her personal journey growing up with congenital CMV and her mission to help families, professionals, and communities better understand CMV's lifelong impact.

Jess Moen

Jess is the MN Early Hearing Detection & Intervention (EHDI) Statewide Specialist. She previously worked as a Teacher of Deaf/Hard of Hearing in Northern Minnesota. She supports educators and families of children with hearing differences, with particular expertise in early childhood and students with additional disabilities, helping build inclusive, effective learning environments across the state.