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Mothers and Scientists Combat Birth Defects Virus

Posted Jun 11 2009 8:11pm




CDC Raises Awareness of #1 Viral Cause of Disablities--More Common Than Down Syndrome


Suffern, NY. In an effort to prevent the #1 viral cause of mental and physical handicaps, an international community of scientists, academics, practitioners, and families will gather to discuss congenital CMV research findings and how they can be translated into public health action.

The 2008 Congenital CMV Conference will be held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, on November 5-7. http://www.cmvconference2008.com/

According to the CDC:
#Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects
#Every hour, congenital CMV causes one child to become disabled
#Approximately 1 in 150 children is born with congenital CMV infection #Approximately 8,000 children each year suffer permanent disabilities caused by CMV.
Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, will speak at the Conference. She said, “The moment my daughter Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. I was never warned that I put my pregnancy at risk by working in daycare.” Elizabeth is pictured above. For information about her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV, visit: http://www.authorlisasaunders.com/ See her mission at: http://www.hvbiz.biz/health/health09220801.php

“We expect the 2008 Congenital CMV Conference will raise awareness of birth defects in the broad medical community and the general public. And ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease,” said, Lenore Pereira, Ph.D., Conference Co-Organizer and Founder, Congenital CMV Foundation.

CMV is found in body fluids, including urine, saliva, breast milk, blood, tears, semen, and vaginal fluids. The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth or cheek and sharing food, towels or utensils with them. See brochure: www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf Hear podcast: www2a.cdc.gov/podcasts/player.asp?f=7926

“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,” state Drs. Cannon and Davis. See article http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
CONTACTS/MORE INFO
The 2008 Congenital CMV Conference is sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu or visit http://www.cmvconference2008.com/ . The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov

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. To donate/contact the Registry, call (832) 824-4387.

There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. See Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection

Others affected by CMV willing to be contacted by the media:

Angela Davis of Cape Coral, Florida, is the mother of Chloe born in 2003. “I was so careful during my pregnancy, doing everything I could to protect her and WHAM out of nowhere—like lightning striking. It seemed so unfair that no one felt her life was significant enough to give the necessary precautions.” Angela stated that if she’d been warned, she wouldn’t have changed diapers or shared food and drinks with her children. Speaking of the pregnancy complications of toxoplasmosis, Angela continued: “It seems kind of silly that they tell you not to change the cat litter but forget to tell you not to change the baby.” Chloe has microcephaly, cerebral palsy, brain damage, deafness and autistic-like behaviors. Web: http://web.mac.com/luvmykidz/congenitalcmvchildren E-mail: angie-davis@COMCAST.NET


Janelle Greenlee of Sunnyvale, California, is the mother of twin sisters, Riley and Rachel, born in 2003. Janelle, one of the first mothers to start a CMV Awareness campaign in the United States, began her efforts while her daughters were infants, sometimes cuddled on her chest while she wrote online. "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late, like many of our families have." Riley has cerebral palsy and is profoundly deaf, while Rachel has cerebral palsy, microcephaly, seizure disorder, G-tube, visual impairment and is also profoundly deaf. Meet Riley and Rachel at http://www.rileyandrachel.com/ . “Stop CMV” T-shirts are available through Janelle’s Web site at http://www.stopcmv.com/ email: stopcmv@yahoo.com


Lori LeClair of Ontario, Canada, is the mother of Camryn born in 2002. Until Camryn's birth, Lori never heard of CMV and had she known, she said, "I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time. I also would have asked to be tested for CMV antibodies prior to getting pregnant." Camryn is profoundly mentally retarded, legally blind, spastic quadriplegia, non-verbal, began having seizures at the age of two, has reflux, wears diapers, eats via feeding tube and she has lost hearing in left ear. gleclairc543@rogers.com


Tracy McGinnis of Omaha, Nebraska, is the mother of Brendan, born in 2004. "When my son was diagnosed with congenital CMV at three weeks of age, I had never heard of it before. After the first few months of this challenging and painful diagnosis, I became determined to do all I could to keep this from happening to other children. I have since established the Brendan B. McGinnis Congenital CMV Foundation, named in honor of my son. Its primary focus is to raise public awareness about CMV and to educate women to demand to be tested for CMV prior to pregnancy.” Brendan has severe cerebral palsy, microcephaly, global developmental delays, deafness in one ear, sleep issues, dental issues, a feeding tube, is nonambulatory, nonverbal and most recently developed seizures at age three and a half years old. See the non-profit Brendan B. McGinnis Congenital CMV Foundation, a 501 (c)(3), at http://www.cmvfoundation.org/ . T-shirts to raise awareness are now available. E-mail: mcginnis@cmvfoundation.org


Lynn Pickus of Plainview, New York, is the mother of Noah born in 2004. Lynn is trying to establish a CMV awareness day. She learned that in order to create one, "a bill of sorts must be passed. I have contacted my congressman's office and they told me it needs to start in the senate. I have been in contact with my senator's office but I was told that it is very difficult to get an Awareness Day because there are so many diseases. I passed along CMV information to the person in charge of health issues, and she will approach the judiciary committee/office with it. If anyone is interested in contacting their elected officials visit www.usa.gov/Contact/Elected.shtml to find out who yours are. Maybe you’ll contact someone who will do something. The more phone calls, the better chance we have.” Noah has a moderate to severe hearing loss, right hemiparisis due to cerebral palsy, seizure disorder, feeding disorder, and global developmental delays. LKelli@aol.com ,


Carmen Burton of England is the mother of Natalie born in 1993. "Natalie knows she is one of the lucky ones because she can walk and communicate and learn things, even though she finds it harder than her classmates, but she still hates CMV. She likes talking to people about it—she knows it can't be cured, but she wants people to understand how she feels, and she wants the doctors to find a cure so that more babies don't get it. I get so angry when I go to the Dr.'s surgery or hospitals and see posters for Rubella, Meningitis and Toxoplasmosis but nothing about CMV. As the Coordinator of the Congenital Cytomegalovirus Association UK, my aim is to raise enough money to get a CMV Awareness poster in every Dr's, midwife, and baby clinic in the UK." Natalie is profoundly deaf and has a Cochlear Implant. She has epilepsy, learning difficulties, mixed muscle tone, sleep and eating issues. She is currently in assessment for vestibular dysfunction and Asberger Syndrome. See the Congenital Cytomegalovirus Association UK at http://www.cmvsupport.org/ Email: carmen.burton@ntlworld.com


Tina Konczol, of Walker, Louisiana, is the mother of Chelsea born in1996. “Even though it's too late for our children, we would love to see progress made on preventing other children from being born with congenital CMV.” Tina is the “owner” of the parent-member CMV LISTSERV, http://listserv.syr.edu/archives/cmv.html . If you have a child with congenital CMV, join the group to ask questions, give advice, or to simply feel less alone in the daily joys and struggles of raising your child. Chelsea had severe spastic quadriplegia cerebral palsy, epilepsy, progressive hearing loss, and was legally blind, profoundly mentally retarded, non-verbal, non-ambulatory, etc. She died just before her fourth birthday. tinak2001@aol.com

Christi Wahnschaffe of Puyallup, Washington, is the mother of Cameron born in 1995. “I fully believe that I could have prevented CMV had I been made aware of the risks. It is so frustrating to me that the world is so hesitant to educate women about CMV—we could be saving babies from severe disabilities or even death.” Cameron is profoundly deaf, has developmental delays, Speech Language Impairment, Obsessive Compulsive Disorder and Attention Issues. wahnfam@msn.com

Jenny McPherson of Augusta, Georgia, is the mother of Abby born 2004. “I had never heard of CMV before I had Abby. I believe all pregnant women should be screened for CMV and be educated about the risks and prevention of CMV during their initial prenatal visit.” Abby has a VP shunt due to hydrocephalus, profound hearing loss, vision impairment, seizure disorder, feeding disorder, and profound cognitive and developmental delays. jennyandarchie@knology.net

Jenny Bailey of Houston, Texas, is the mother of Caroline born in 1990. "Caroline was the first baby in Houston to get the ganciclovir treatment, and other than profound hearing loss, she has been fine. The treatment stopped the progress of the disease in her central nervous system in its tracks. In fact, she began reading at age three, was mainstreamed at five, and graduated from high school this year after taking five AP classes senior year and working at Barnes & Noble." Caroline had the cochlear implant surgery at age 14. jmb101@comcast.net

Chantelle Rowe of Australia is the mother of son Kaiden, born July 4, 2007. "I wish I had known about CMV when I was pregnant. I was one of those women who stuck to all the rules, down to a T. I only ate what I was told to and I stayed away from EVERYTHING I was told to avoid. It just felt like the biggest slap in the face when it happened to me. I was very: 'WHY ME??'" Kaiden is doing very well, but has moderate/severe loss to left ear and profound to right. Chantelle raises awareness through her site: E-mail:

To see photos of other children born with CMV, view the CMV poster available on http://www.cmvinformation.com/

*Lisa Saunders is a writer for the State University of New York at Rockland. Her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), is the moving and sometimes humorous account of Elizabeth’s life with pets, and includes the latest news on CMV prevention and treatment plus comments from scientists and other parents affected by congenital CMV. Advance copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com . Contact Lisa Saunders directly for an interview or an autographed copy at saundersbooks@aol.com . To see a photos of Elizabeth Saunders,visit http://www.authorlisasaunders.com/ , to see list of mothers willing to be interviewed, visit Lisa's CMV blog at: http://congenitalcmv.blogspot.com/

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