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9/26/2014  |   2:45 PM - 3:15 PM   |  Idaho

How a Parent Can Raise a CMV Prevention Message

As a result of the State of Utah passing a bill requiring congenital cytomegalovirus (CMV) education and testing of newborns who fail the hearing screen twice, parents now have a template to follow in their own state to raise congenital CMV awareness among women of childbearing age. This presentation describes how to find one’s local representatives, what to ask for, which cCMV facts to present, and how to write and submit press releases to get media attention to move politicians to pass a bill similar to Utah’s. Other important ways to raise awareness is through "Letters to the Editor“ and offering oneself as a speaker. A state’s Early Hearing Detection & Intervention (EHDI) American Academy of Pediatrics (AAP) Chapter Champion can be a major help in this process. “Parents can inspire doctors, media and politicians to work together to save future children from the suffering caused by congenital CMV,” says Lisa Saunders, parent representative of the Congenital CMV Foundation and author of a book, "Anything But a Dog! The perfect pet for a girl with congenital CMV." She coordinates the blog, congenitalcmv.blogspot.com, which specializes in reaching the general public with news about cCMV and how they can help raise awareness.

Lisa Saunders (Primary Presenter), saundersbooks@aol.com;
Lisa Saunders, parent representative of the Congenital CMV Foundation, has been raising CMV awareness since the death of her 16-year-old daughter Elizabeth in 2006. Born severely disabled by congenital CMV, Elizabeth was unable to walk, talk, sit up, roll over or feed herself. Cortically blind, she was beginning to lose her hearing at the time of her death during a seizure. Lisa recounts Elizabeth's life with her big sister and a series of dysfunctional pets in her memoir,

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Presentation:
175LisaSaunders.pdf

Handouts:
175LisaSaunders.pdf