Friday, October 16, 2015

Need Speaker on Congenital Cytomegalovirus (CMV)?

I am Lisa Saunders, the parent representative of the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing, and the need to develop a vaccine. I am also the  author of the memoir, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus).

About 1 in 150 children is born with congenital CMV infection, and about 20% percent of those are permenently disabled by it. I have spoken to several organizations such as the  Center for Disease Control and Prevention and Siemens Healthcare Diagnostics about my daughter’s life with cCMV, and was recently instrumental in getting a law passed in Connecticut requiring testing for cCMV for infants who fail their required hearing screen. If a baby tests positive for cCMV, doctors can offer the antiviral that has shown to improve outcomes (brain size, hearing, etc.). My work on the Connecticut bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media (see News 8 at CT Capitol RE: CMV and below my signature for additional TV coverage and articles).
To learn how to stop the spread of CMV, see the CDC's website on cCMV (prevention includes careful handling of the saliva of toddlers) at:, or print this CDC flyer: CDC: CMV Prevention Flyer,
The prevention education part of the Connecticut bill did not pass because it would cost the state $40,000 a year to educate the public about the disease. Perhaps you can help spread prevention awareness by posting tips on your website and/or thinking of another ways we can collaborate to stop this #1 viral cause of birth defects? If you need a speaker on the topic, I have included some information on my talks (with references) below my signature.
There is no vaccine yet to prevent congenital cytomegalovirus (cCMV), which causes more disabilities (hearing loss, cerebral palsy, learning disabilities) than Down syndrome or toxoplasmosis (the kitty litter disease). If more people knew about human cytomegalovirus (HCMV) not only would children be spared the suffering my daughter endured for 16 years until her death during a seizure, but one reason for the delay in successful development of a vaccine is “there has been insufficient education about the problem of HCMV infection…” Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.
Upon the Connecticut bill passing, I presented to Connecticut's Medical Assistance Program Oversight Council's Women’s Health Committee to explain cCMV and the required testing.  Here is my PowerPoint uploaded to Google drive. Other presentations and speaker references are included below my signature.
If you are looking for a speaker, please contact me for my availability.
Lisa Saunders
PO Box 389, Mystic, CT 06355
My cCMV blog:
Personal website:
Presentations and references include:  
  • Congenital Cytomegalovirus Conferences (CDC, Atlanta, GA, 2008; San Francisco, CA, 2012; Salt Lake City, UT, 2014). References for all three conferences include:
  1. Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco., or visit The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
  2. Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330, The CMV Registry supports CMV research, disseminates information and provides parent support.
  3. Michael Cannon, Ph.D., a research epidemiologist at the Centers for Disease Control and Prevention. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.
  1. Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321,
  2. Rep. Susan Johnson,
  • Siemens Healthcare Diagnostics (Fall 2010 webinar and my story published in their magazine). References:
  1. Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing,
  2. Theresa Spence, M.B.A., Senior Marketing Manager, Disease State Marketing, Siemens Healthcare Diagnostics, Inc., 
  1. Kris Magnussen,
  • CT Magazine June 2015 (One Mystic Mother is Trying to Raise Awareness of a Common Virus That Can Have Devastating Consequences for Pregnant Women)

DATE: June 4, 2015
CONTACT: Lisa Saunders
Parent rep, Congenital CMV Foundation
PO Box 389, Mystic, CT 06355
 Moms and Doctors Find Hope When Connecticut Becomes 2nd State to Pass Bill on 
House Bill 5525 - An Act Concerning Cytomegalovirus: "A screening test for cytomegalovirus for newborns who fail a newborn hearing screening."
Mystic, Conn.—  Ever since Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, learned Utah became the first state to pass a bill on the leading viral cause of birth defects in 2013, she has been asking Connecticut to become the second. A CMV bill was passed by the House in 2014, but the Senate failed to vote on it before the end of the legislative session. Then it happened--in the 2015 legislative session, the bill finally became law after the Public Health Committee, House (watch Saunders' representative urge support), then Senate passed it, sending it onto Governor Malloy who signed House Bill 5525: "An Act Concerning Cytomegalovirus" on May 26, 2015.

From a press released issued June 4, 2015, by the State Senate Democrats of the Connecticut General Assembly: "With bipartisan support, the legislature approved and the governor signed a bill that will help mitigate the devastating impact that this disease has on families. The bill requires that hospitals and other health care institutions test newborn infants for CMV if they fail a newborn hearing test. This will help parents intervene early and get their newborn child the help it needs."

When Saunders and other parents whose children were disabled by congenital CMV, plus those in the medical community who supported the bill, learned the governor had signed the bill, they were ecstatic (see their Public Hearing Testimonies).

"This is a game-changing step forward in our ability to determine CMV causality and give parents a viable option for early treatment," said Scott R. Schoem, MD, FAAP, Director of Otolaryngology, Connecticut Children’s Medical Center.

Congenital CMV it is the most common cause of nonhereditary sensorineural hearing loss in childhood. In addition to deafness, Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and cerebral palsy as a result of infection in pregnant women‎. According to the CDC, in the U.S.:

  • Every hour, congenital CMV causes one child to become disabled.

  • About 1 in 750 children is born with or develops permanent problems due to congenital CMV infection.

  • More than 5,000 children each year suffer permanent problems caused by congenital CMV.
Saunders, the author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," said, “My OB/GYNs didn’t tell me how to prevent congenital CMV, namely by avoiding kissing my toddler near the mouth or sharing food with her, until after my second daughter was born profoundly mentally and physically disabled by the disease. It was then that I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. While I was pregnant with Elizabeth, I not only had a toddler if my own, I was also running a licensed daycare center in my  home. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning, but Elizabeth's case was not a mild one.” Elizabeth died at age 16 during a seizure in 2006.

“We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children," said Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion.

Ronda Rudd Menlove, Ph.D., the representative responsible for passing and enacting the bill in Utah, and co-founder of the Utah CMV Council, said, ”The Connecticut legislation extends important education and protection to families and infants from the devastating effects of CMV. The impact on lives and the reduction of state dollars needed to serve those impaired by CMV is immeasurable. This is an excellent example of the power of an individual in the political process. We in Utah applaud Connecticut lawmakers for listening to Lisa Saunders and acting to protect all children and families." 

Menlove's daughter, Sara Menlove Doutre, co-founder of the Utah CMV Council, has a daughter affected by congenital CMV. Doutre, a special education and early intervention policy consultant, is encouraged by the number of states pursuing CMV legislation and believes that number will continue to grow. She said: "In 2013, one state, Utah, created a CMV awareness and screening program. In 2015, five states proposed legislation. Connecticut follows Utah as the second state to enact legislation and will be followed by Texas and Hawaii, where bills await governors' signatures."

Children born with congenital CMV can be treated if diagnosed early. “CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route -- treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones,” says Dr. Demmler-Harrison of Texas, Director, Congenital CMV Disease Research, Clinic and Registry. According to the article, Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease“Treated infants had fewer developmental delays…than untreated infants”
Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative, said, "I am so excited that another state is bringing attention to congenital cytomegalovirus.  Utah is looking forward to partnering with Connecticut in their upcoming endeavors." In addition to testing newborns for CMV if they fail their hearing screen, Utah’s H.B 81 requires CMV prevention brochures for doctors, parents, and daycare providers.

The United States Senate had passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.” (This occurred through the efforts of Stop CMV.)

To learn more about congenital cytomegalovirus and how to prevent it, visit the Centers for Disease Control and Prevention at:

You can print CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)

To see the answers to the most common questions, such as why OB/GYNs don't routinely warn their patients about congenital CMV, why there isn't a vaccine yet, what percentage of people know how to prevent CMV, and how much it costs to care for children disabled by congenital CMV, download the One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders

For a detailed presentation on the disease and testing for it, print the presentation,"Congenital CMV 101: From Prevention to Treatment," by Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC), by clicking on: cCMV 101 Webinar Slides [PDF]. You can hear watch/hear his presentation with the slides at: cCMV 101 Webinar Recording
Lisa Saunders of Mystic, Connecticut, is author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," and the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine (LenorePereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco, is the Foundation founder).