March 8-10, 2020 • Kansas City, MO


3/03/2019  |   1:00 PM - 4:00 PM   |  Action Planning: Increase Education about and Awareness of Congenital Cytomegalovirus among EHDI Stakeholders   |  Paris

Action Planning: Increase Education about and Awareness of Congenital Cytomegalovirus among EHDI Stakeholders

Across the country, momentum is building to increase awareness of congenital cytomegalovirus (CMV). CMV is the leading known cause of childhood hearing loss, yet very few adults (7%) have heard of it. Hearing loss due to CMV can be prevented and treated, when professionals and parents know about it. In the past five years, fifteen states have proposed and nine states have passed legislation requiring CMV education programs, CMV testing for newborns who fail the newborn hearing screening, or both. Additionally, many more states are raising awareness about CMV through educational campaigns without legislation. This interactive workshop session is divided into two segments. Segment one: attendees will receive an overview of legislation and samples of state and National CMV Foundation educational campaigns. Segment two: attendees will work in small groups and use feedback from the large group and CMV experts to develop action plans for creating momentum around CMV awareness, identifying key stakeholders for relationship building and group thinking, and developing effective CMV messaging when promoting education and/or screening. Participants will be provided with an action planning template and other resources for pursuing, increasing, and/or refining CMV activity in their states. Attendees will leave the session with an outline of a campaign including target audience, educational messages, deliverables, and a dissemination plan. This hands-on session is important for anyone (e.g., public health workers, policy makers, clinicians, researchers and parents) wishing to increase awareness about CMV through legislative or educational campaigns. Participants that are interested in working together are encouraged to attend with others from their state.

  • Identify key stakeholders for raising CMV awareness through education or screening.
  • Develop appropriate CMV educational messages for identified target populations.
  • Learn about existing resources available to help pass legislation and implement educational campaigns and provide examples of successful efforts.

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Sara Doutre (), National CMV Foundation, saradoutre@gmail.com;
Sara Doutre is a PHD student studying sociobehavioral epidemiology at Utah State University. She has an MA in education policy studies and a BS in elementary and special education. A former special education teacher, she currently consults with state departments of education and health on special education policy. Her six-year-old daughter is deaf due to congenital cytomegalovirus.


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No relevant financial relationship exist.

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No relevant nonfinancial relationship exist.

Kristen Spytek (), National CMV Foundation, kristen.spytek@nationalcmv.org;
Kristen serves as President & CEO of National CMV Foundation. She was most recently the Vice President of Account Management for Rosetta, now SapientRazorfish, a multi-service offering, customer-centric, consulting agency. A graduate of the University of Michigan, with an M.A. in Global Marketing Communications & Advertising from Emerson College, Kristen has 13 years in marketing and digital media experience working with several leading global and national brands. She co-founded the National CMV Foundation with her husband John, inspired by their daughter Evelyn Grace, born with congenital CMV. Kristen lives in Tampa, Florida with her husband and two sons.


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