Tuesday, September 22, 2009

CMV Parents: Send Letter to the Media

Dear CMV Parents: If you like any of the following letters, just tweak it to focus on your child and your hometown and send it to any radio/TV stations/newspapers you are willing to be interviewed for (consider attaching a photo because that makes it more human and the print media need photos). Also, below my signature I included several links to CMV sources such as STOP CMV and the articles I quote.

Dear [name of producer/editor]

[Mention how you found out about them.]

Congenital CMV (cytomegalovirus) causes more birth defects than Down syndrome, yet very few women have actually heard how to prevent it. Would you be interested in interviewing congenital CMV experts and parents with CMV disabled children to educate the public how careful hand-washing and refraining from sharing utensils with toddlers can prevent this #1 viral cause of birth defects?

I live in Mystic,CT, am the parent representative of the Congenital CMV Foundation and a STOP CMV area representative. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these figures from the CDC:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness , only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My short TV news interview: http://video.aol.com/video-detail/coping-with-cmv/3443071507

To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv

I am a full-time writer for the State University of New York at Rockland Community College and a member of its Speakers Bureau.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

Lisa Saunders
[Include your full address and all phone numbers]

The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003 .My CMV blog: http://congenitalcmv.blogspot.com/

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV Information Sources:

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV p revention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

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 mcannon@cdc.govThe other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biolog y Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ 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.