Tuesday, April 30, 2013

Media: Please help stop #1 Birth Defects Virus--Congenital CMV (cytomegalovirus)

Dear Reporters/Newcasters,
Much of my writing work since the death of my daughter (pictured on left) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed my daughter (she died during a seizure). It causes more disabilities than Down syndrome, yet very few women of child-bearing age have heard about it or know how to prevent it.
If interested in helping raise awareness of congenital CMV (and/or encouraging women to participate in an ongoing, national treatment trial,* I would be happy to speak to you. The following is my short bio, which  includes my work to broadcast a congenital CMV message through speaking and writing:
Lisa Saunders lives in Mystic, Connecticut, with her husband and beagle/basset hound. A local TV co-host, she is the parent representative of the Congenital CMV Foundation and speaks at the international congenital CMV conferences (2008, 2012) co-sponsored by the Centers for Disease Control and Prevention (CDC). Most recently, she spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). Lisa is a part-time history interpreter at Mystic Seaport, a Cornell University graduate, and the author of several books, including her humorous and historical travel memoir, Mystic Seafarer's Trail, where she reveals her desire to become thin and famous like Amelia Earhart so people will listen to her CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about her disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort she received from her father's fairytale after her daughter died, she published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker (it's available as a free e-book at Smashwords). Her other books include the Civil War book and play, Ever True: A Union Private and His Wife, and her children's novel, Ride a Horse Not an Elevator.
Lisa maintains the congenital CMV blog at: http://congenitalcmv.blogspot.com/
A recent newsclip highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness:
Clinical trial puts congenital CMV in spotlight for pregnant women ...

*If interested in highlighting the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456
Thank you for your time.

Lisa Saunders
Mystic, CT 06355

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