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.
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.
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
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