Saturday, January 24, 2009

Times Herald Record Raises CMV Awareness

January 26, 2009
Lisa Saunders
Suffern, NY

Doctors Don’t Teach Prevention of #1 Birth Defects Virus MORE COMMON THAN DOWN SYNDROME

Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn
Suffern, N.Y. --On Jan. 21, the Times Herald Record published interviews with internationally known CMV experts about the #1 viral cause of birth defects--congenital cytomegalovirus (CMV), which is more common than Down syndrome. Most women have never heard how to protect themselves from contracting it during pregnancy.
The article, “What every pregnant woman needs to know,” by Deborah J. Botti, which includes an interview with Michael J. Cannon, Ph.D., a research epidemiologist at the Disease Control and Prevention (CDC ), addresses the controversy between CMV researchers regarding the benefits of routinely screening pregnant women for the disease. There is, however, little controversy about CMV’s devastating toll and the need for a prevention message.
Excerpt: “According to the CDC, CMV causes more permanent disabilities than Down syndrome, fetal alcohol syndrome, spina bifida or neural tube defects; yet, few people have heard of it. CMV is responsible for an estimated 400 deaths and about 8,000 children born with permanent disabilities each year.
“And CMV could potentially be responsible for far more disabilities because congenital CMV can only be conclusively diagnosed within the first three weeks of birth, and sometimes symptoms aren't seen for months or even years.
"’Nobody's even measured this yet in terms of mild learning disabilities," says Cannon of the virus that can cause hearing loss, vision loss, neurodevelopmental disabilities, small head size, growth delays and problems with the spleen, liver and lungs.” See full article, which includes photos of a little girl disabled by congenital CMV along with her mother, Lisa Saunders, Stop CMV and Congenital CMV Foundation parent representative, at:
To hear the CDC’s podcast about CMV prevention that is available for use by the media, listen to: Staying Healthy When a Baby's on the Way (0:59 minutes)
In December, Reuters raised awareness of the disease in the article, "Mom's infection raises risk of infant hearing loss," seen at

Contacts: For more information about the article, contact reporter, Deborah J. Botti, at For more information about congenital CMV, visit or contact Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at; Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program, at or visit or call (832) 824-4387; or contact Congenital CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, at, or visit which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To contact a parent willing to speak about their child’s experience with congenital CMV, e-mail Lisa Saunders, author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," at or visit to find a STOP CMV representative near you.
“Anything But a Dog! The perfect pet for a girl with congenital CMV,” raises funds for CMV research and parent support if purchased through the Registry at
The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at He and Dr. Davis stated in their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” that “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” See:

Thursday, January 8, 2009

Friday, January 2, 2009

Reuters Article: Congenital CMV

Reuters recently published an article about the #1 viral cause of birth defects, congenital CMV (cytomegalovirus). See "Mom's infection raises risk of infant hearing loss" at

I am the mother of a daughter disabled by congenital CMV. I was never warned how to prevent contracting this virus even though it is a more common cause of disabilities than Down syndrome. I am the parent rep for the Congenital CMV Foundation and spoke at the international 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta. I would like to see OB/GYNs warn their patients about CMV and teach them the CDC’s recommendations for avoiding it (careful handwashing, being cautious around the saliva of young children, etc). If people are interested in learning more about my daughter's life with congenital CMV; a big, homeless dog's devotion to her, and the latest news on CMV prevention and treatment, they can view the National Congenital CMV Disease Registry's special edition of my humorous memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” on If copies are purchased through that link, a percent of the profits are donated to congenital CMV research and parent support.

Lisa Saunders
Suffern, New York