Sunday, February 28, 2016
Saturday, February 27, 2016
My baby was born with microcephaly: CMV versus Zika
My name is Lisa Saunders and I live in Mystic, Connecticut.
My daughter, Elizabeth Saunders, was born with microcephaly (see attached), and although Zika is in the news, cytomegalovirus (CMV), the #1 birth defects virus, is barely mentioned--and it's preventable if women know about it!
Arizona's 12 News just did a piece on how much more widespread CMV is (and how to prevent it): http://www.12news.com/news/vir
According to the CDC, congenital (meaning present at birth) CMV causes one child every hour to become disabled in the U.S. That is over 5,000 a year. See: http://www.cdc.gov/cmv/index.
I'm the parent representative of the Congenital Cytomegalovirus Foundation and was instrumental in getting Connecticut to become one of the few states in the U.S. to pass a law to help mitigate congenital CMV (the law went into effect this year).
Unfortunately, the prevention education part of the CT CMV bill didn't pass because of funds. That is why I'm turning to the media to help educate the public as it has for Zika as a cause of microcephaly (having a small, damaged brain can mean mental and physical disabilities, epilepsy, etc.). To help you find an angle to cover it, I created the following press release about the disease and my work to help prevent it through my new table-setting fairytale with an appendix for adults on why they shouldn't share cups, etc., with children (I did a short video to introduce the book to children at: https://youtu.be/_0jDOKPFg4M). CMV is spread by bodily fluids and most women contract it from their apparently healthy toddlers because they share cups/utensils with them (along with kisses on/near the mouth). If the woman is pregnant, she can pass the virus onto her developing baby.
Studies done in the U.S. and France show that if women are educated on how to prevent CMV, they will greatly reduce their chances of contracting it. Only 7% of men and 13% of women surveyed had heard of congenital CMV.
Media coverage on my new children's book include:
- Hartford Books Examiner: Table manners: Lisa Saunders on 'Once Upon a Placemat' (Q&A)
- Mystic River Press: Mystic author’s new release is about setting the table
Please see the following press release and photographs for more information.
Sincerely,
Lisa Saunders
P.O. Box 389
Mystic, CT 06355
IMMEDIATE RELEASE
Mother Writes Table-Setting Fairytale to Stop #1 Birth Defects Virus
(and to explain how the knife stops the dish from running away with the spoon)
“Once Upon a Placemat: A Table Setting Tale” includes germ prevention
Mystic, Conn.— Lisa Saunders wrote Once Upon a Placemat: A Table Setting Tale to teach children how to set the table in a fun and memorable way, in addition to teaching their parents how to stop the leading viral cause of birth defects, congenital cytomegalovirus (CMV), which is spread when cups and other dishware are shared. The "Placemat" characters are available for coloring on free downloadable placemats, which also includes germ prevention tips, at: https://drive.google.com/file/d/0B9Klfxar2CmjbHROT0Y5RG1RQ3M/view?usp=sharing (This link includes a version of the placemat available to organizations who would like to distribute it with their own information/logo placed in the top open space.)
Lisa Saunders is an award-winning writer living in Mystic, Connecticut, with her husband and hound. A graduate of Cornell University, she is the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, and in 2015, was instrumental in helping Connecticut become one of the few states in the country to enact a law combating the leading viral cause of birth defects, congenital (meaning present at birth) CMV. Saunders said, “CMV is carried by a high percentage of apparently healthy toddlers. It is found in bodily fluids such as saliva and is of concern to women of childbearing age because the virus can lead to complications in their baby's development if they are pregnant while infected.”
Saunders’ daughter, Jackie Tortora, co-authored “Once Upon a Placemat: A Table Setting Tale,” which includes recipes of the foods eaten in the story. Tortora is a digital strategist living with her husband and their young son in Vienna, Virginia.
“Once Upon a Placemat” is an expanded version of the fairytale Saunders told in her children’s novel, “Ride a Horse Not an Elevator,” which is featured in the Cornell University 4-H “Horse Book in a Bucket Program.”
“Once Upon a Placemat” is illustrated by Marianne Greiner of Bloomfield, New York.
For more information, visit www.authorlisasaunders.com or write to LisaSaunders42@gmail.com
###
Photograph captions:
Mother Lisa Saunders holds her new baby, Elizabeth, born in 1989 with microcephaly from congenital cytomegalovirus (CMV). Her older daughter looks on. Elizabeth struggled with physical and mental disabilities for 16 years, in addition to a hearing loss, until her death during a seizure in 2006. Photograph by James P. Saunders.
Lisa Saunders holds a photograph of her daughter, Elizabeth (1989-2006), next to Governor Dannel P. Malloy at the ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of the Governor in Hartford, Conn., on July 28, 2015.
Book Details: “Once Upon a Placemat: A Table Setting Tale"
List Price: $6.99
Publication Date: Feb 02 2016
ISBN/EAN13:1523750790 / 9781523750795
Page Count: 40
Trim Size: 6" x 9"
Language: English
Color: Black and White
Related Categories: Juvenile Fiction / Cooking & Food
Friday, February 26, 2016
Friday, February 5, 2016
Fairytale Teaches Table Setting and CMV Prevention
Many children don't know how to set the table so I thought the fairytale would be a useful tool for families. In addition to learning how to arrange the tableware, children will learn the importance of washing hands before meals and refraining from sharing unwashed dishes.
Children (and sometimes adults) can be guilty of asking another to share a sip from their cup without realizing the possible serious health consequences. In addition, some mothers of childbearing age don't realize they shouldn't share dishes with their young children as a child's saliva could contain cytomegalovirus (CMV), a virus that is usually harmless to them, but can have devastating consequences if a woman catches CMV while pregnant. Congenital (present at birth) CMV is the leading viral cause of birth defects.
For more information about the fairytale, early reviews, and the free placemat, see the following press release.
Thanks!
Lisa Saunders
PO Box 389, Mystic, CT 06355
www.authorlisasaunders.comFOR IMMEDIATE RELEASE
Grandmother Lisa Saunders Teaches Table Setting Skills
To Keep the Dish from Running Away With the Spoon
Fairytale told to a little girl in “Once Upon a Placemat” includes germ prevention (including those that cause prenatal infections)
Mystic, Conn.— Lisa Saunders, a grandmother in Mystic, wrote a table-setting fairytale to teach children how to set the table in a fun and memorable way. Her daughter, Jackie Tortora, co-authored “Once Upon a Placemat: A Table Setting Tale,” which includes recipes of the foods eaten in the story, plus germ prevention tips. The "Placemat" characters are available free for downloading and coloring by clicking here *(reverse side of placemat lists disease spread through saliva plus the CDC's recommendations for hand washing).
About the book: When a young girl can't remember how to set the table, her grandmother teaches her to listen to the silverware. Learn why the table is set the way it is. Why does the knife keep a sharp eye on the plate? Why does the fork want a napkin bed and the cup insist she and the others get a bath before being shared?
"Once Upon a Placemat finally accomplished what we could not--getting our kids to remember how to correctly set the table! Now, I hear my 12-year-old saying to herself, “Mr. Knife stands between Mrs. Spoon and Mr. Plate. Mr. Knife keeps his eyes and teeth toward Mr. Plate because he doesn’t trust him since there was that time the ‘dish ran away with the spoon.’ What a brilliant extension to an old nursery rhyme. ‘Once Upon a Placemat’ will also help your kids better understand the importance of washing their hands before meals and not sharing dishes. Short story--big impact. Finally, a story that sticks!” said Dr. Rebecca Cihocki, an audiologist in Scottsdale, Arizona.
"Once Upon a Placemat finally accomplished what we could not--getting our kids to remember how to correctly set the table! Now, I hear my 12-year-old saying to herself, “Mr. Knife stands between Mrs. Spoon and Mr. Plate. Mr. Knife keeps his eyes and teeth toward Mr. Plate because he doesn’t trust him since there was that time the ‘dish ran away with the spoon.’ What a brilliant extension to an old nursery rhyme. ‘Once Upon a Placemat’ will also help your kids better understand the importance of washing their hands before meals and not sharing dishes. Short story--big impact. Finally, a story that sticks!” said Dr. Rebecca Cihocki, an audiologist in Scottsdale, Arizona.
"The lesson of how to set a table is valuable as this is part of encouraging a family to sit down and eat together—a main intervention in preventing obesity," said Alison Dvorak, MS, RDN, CDN, of Franklin, Connecticut.
“Once Upon a Placemat is a charming story of how the eating utensils came to arrange themselves on the table in the time honored elegance of a table well set. In addition to creating an atmosphere for families to eat healthy dinners together, Lisa Saunders provides parents and caregivers with valuable information about how to prevent the spread of cytomegalovirus (CMV), the leading viral cause of developmental disabilities in infants. The information is easy to understand and yet very thorough. Great references for more information,” said Dr. Joanne Z. Moore, owner of Shoreline Physical Therapy in East Lyme, Connecticut.
“Once Upon a Placemat ” is an expanded version of the fairytale Saunders told in her children’s novel, “Ride a Horse, Not an Elevator,” which is featured in the Cornell University 4-H “Horse Book in a Bucket Program.”
Lisa Saunders is an award-winning writer living in Mystic, Connecticut, with her husband and hound. A graduate of Cornell University, she is the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, and in 2015, was in instrumental in helping Connecticut become one of the few states in the country to enact a law combating the leading viral cause of birth defects,
congenital (meaning present at birth) CMV. Saunders said, “CMV is carried by a high percentage of apparently healthy toddlers. It is found in bodily fluids such as saliva and is of concern to women of childbearing age as a child's saliva could contain cytomegalovirus (CMV), a virus that is usually harmless to them, but can have devastating consequences if a woman catches CMV while pregnant. Congenital (present at birth) CMV is the leading viral cause of birth defects.” Saunders shares her story in her memoir,
"Anything But A Dog!: The Perfect Pet For A Girl With Congenital Cmv (Cytomegalovirus)"
Co-author Jackie Tortora, a digital strategist living with her husband and their young son in Vienna, Virginia, created the title, cover illustration, and additions to the tableware characters in 1999 when she was 12 years old.
“Once Upon a Placemat” is illustrated by Marianne Greiner of Bloomfield, New York.
People are invited to "Like" “Once Upon a Placemat” and upload their colored placemats at: www.facebook.com/
The book is available on Amazon and Createspace.
For more information, visit www.authorlisasaunders.com or write to LisaSaunders42@gmail.com
Book Details: “Once Upon a Placemat: A Table Setting Tale"
List Price: $6.99
Publication Date: Feb 02 2016
ISBN/EAN13:1523750790 / 9781523750795
Page Count: 40
Trim Size: 6" x 9"
Language: English
Color: Black and White
Related Categories: Juvenile Fiction / Cooking & Food
*Links:
Free general germ prevention placemats for coloring: https://drive.google.com/file/
Free congenital CMV (plus other germs) prevention placemats for coloring:
CMV Prevention Placemat link: https://drive.google.com/file/
Book's front cover: https://drive.google.com/file/
Book's front and back cover together: https://drive.google.com/file/
Createspace: https://www.createspace.com/59
Saturday, November 14, 2015
Can You Post #1 Birth Defects Virus (congenital CMV) Prevention?
Can you help prevent the leaving viral cause of birth defects, congenital cytomegalovirus (CMV), by posting
information on how a woman of childbearing age can protect their unborn children from this common yet little known disease that causes more birth defects than Down syndrome?
About 1 in 150
children is born with congenital CMV infection, and about 20% percent of
those are permanently disabled by it.
Q. What is being done about this? In 2013, Utah passed a law requiring congenital CMV prevention education in places such as daycare centers and the testing of newborns for CMV if they fail their hearing screen. Last May, Connecticut's Governor Malloy signed a bill requiring newborns who fail a hearing test to be screened for congenital cytomegalovirus. (See photograph of Governor Malloy at the ceremonial bill signing--I'm holding a picture of my deceased daughter, Elizabeth). From a press release 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."
Q. Who is at greater risk for contracting CMV?
A. According to the CDC, “Persons who work closely with children in settings, such as child care facilities, may be at greater risk of CMV infection than persons who do not work in such settings."
Data from a variety of day care center studies indicate that between 44 to 100% of two year olds at a single given time were shedding CMV. Day-care workers are at greater risk according to the article, Cytomegalovirus as an occupational risk in daycare educators.
Data from a variety of day care center studies indicate that between 44 to 100% of two year olds at a single given time were shedding CMV. Day-care workers are at greater risk according to the article, Cytomegalovirus as an occupational risk in daycare educators.
Q. Which women are most at risk for contracting CMV?
A. “75% of women with a primary infection during pregnancy
acquire CMV from their own child under two years of age,” said Stuart
Adler, M.D.
Q. What is being done about this? In 2013, Utah passed a law requiring congenital CMV prevention education in places such as daycare centers and the testing of newborns for CMV if they fail their hearing screen. Last May, Connecticut's Governor Malloy signed a bill requiring newborns who fail a hearing test to be screened for congenital cytomegalovirus. (See photograph of Governor Malloy at the ceremonial bill signing--I'm holding a picture of my deceased daughter, Elizabeth). From a press release 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."
Q. How can congenital CMV be prevented?
Preventing Congenital CMV Infection
Here are a few simple steps to take to avoid exposure to saliva and urine that might contain CMV (See the CDC website to learn more at: http://www.cdc.gov/cmv/transmission.html):
· Wash your hands often with soap and water for 15-20 seconds, especially after
· changing diapers
· feeding a young child
· wiping a young child’s nose or drool
· handling children’s toys
· Do not share food, drinks, or eating utensils used by young children
· Do not put a child’s pacifier in your mouth
· Do not share a toothbrush with a young child
· Avoid contact with saliva when kissing a child
· Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
Q. Why haven’t most
people heard of this leading cause of birth defects before?
A. Doctors don’t
realize how prevalent it is. Fewer than half (44%) of OB/GYNs surveyed reported
counseling their patients about preventing CMV infection. “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,” according to “Washing our hands of the congenital cytomegalovirus
disease epidemic.”
Q. Is this the “kitty litter” disease?
A. No, that is toxoplasmosis, which
causes fewer birth defects than cCMV. Like toxoplasmosis, cCMV is preventable, but
most women of childbearing age have never heard of the precautions to take.
Congenital CMV 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.
·
More
than 5,000 children each year suffer permanent problems caused by congenital
CMV.
With the
exception of a few states like Utah, Texas and Hawaii that recently passed a
bill requiring cytomegalovirus (CMV) prevention education in daycare centers,
very few daycare centers provide education. (See Utah’s flyer for CMV
prevention in daycare centers at:CMV What Childcare Providers Need to Know (English) | Lo qué los proveedores de cuidado infantil necesitan saber
sobre CMV (Spanish).
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 of 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.
Q. Will it make a difference if women are
educated on CMV prevention?
A. Yes,
according to studies in the U.S. and
France. Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry,
states: “Studies have shown that women who know they are CMV seronegative, know
they are pregnant, and know about their toddler's CMV shedding are the most
likely to prevent CMV transmission and reduce their risk from over 50 percent
during pregnancy to a risk of less than 5 percent during pregnancy. "
"For
seronegative pregnant women who are at high risk because of exposure to a young
child in the home or in large group childcare, hygienic precautions are simple,
inexpensive, and highly effective," said Stuart
Adler, M.D., Professor Emeritus of Pediatrics and Professor
of Microbiology and Immunology, Virginia Commonwealth University. (See his article, "Prevention of Maternal-Fetal Transmission of Cytomegalovirus.")
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.)
There is no
vaccine yet to prevent human cytomegalovirus (HCMV). 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.
Click here for
the CDC's
flyer: What Women Should Know About Cytomegalovirus (CMV)
Thank you in
advance for your help.
Lisa Saunders
Parent
representative, Congenital CMV Foundation, and author of
memoir, "Anything
But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)"
PO Box 389,
Mystic, CT 06355, Lisasaunders42@gmail.com
You can access
my presentation to Connecticut's Medical Assistance Program Oversight
Council's Women’s Health Committee to explain cCMV and the
required testing by clicking on my PowerPoint uploaded to Google drive.
My cCMV blog: http://congenitalcmv.blogspot.com
Personal
website: www.AuthorLisaSaunders.com
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).
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.
Sincerely,
Lisa Saunders
PO Box 389, Mystic, CT 06355
Lisasaunders42@gmail.com
My cCMV blog: http://congenitalcmv.blogspot.com
Personal website: www.AuthorLisaSaunders.com
PRESENTATIONS AND MEDIA COVERAGE:
Presentations and references include:
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.:
“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."
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:http://www.cdc.gov/cmv/index.
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
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: http://www.cdc.gov/cmv/index.
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 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.
Sincerely,
Lisa Saunders
PO Box 389, Mystic, CT 06355
Lisasaunders42@gmail.com
My cCMV blog: http://congenitalcmv.blogspot.com
Personal website: www.AuthorLisaSaunders.com
PRESENTATIONS AND MEDIA COVERAGE:
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:
- Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco. lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
- 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,gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides parent support.
- Michael Cannon, Ph.D. mrc7@cdc.gov, 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.
- Medical Assistance Program Oversight Council's Women’s Health Committee (July 13, 2015). References:
- Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov
- Rep. Susan Johnson, Johnson@cga.ct.gov
- Siemens Healthcare Diagnostics (Fall 2010 webinar and my story published in their magazine). References:
- Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com
- Theresa Spence, M.B.A., Senior Marketing Manager, Disease State Marketing, Siemens Healthcare Diagnostics, Inc., theresa.m.spence@siemens.com
- Infection Control Nurses of Connecticut (April 2013). Reference:
- Kris Magnussen, KMagnussen@llhd.org
MEDIA COVERAGE ON MY WORK AGAINST CONGENITAL CMV
2015:
- Connecticut Magazine: Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware
- CT Now: New Cytomegalovirus (CMV) Law in Connecticut
- Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action
- Clinical Advisor: Connecticut passes cytomegalovirus screening law for newborns
- CT Magazine June 2015 (One Mystic Mother is Trying to Raise Awareness of a Common Virus That Can Have Devastating Consequences for Pregnant Women)
2014
- Fox CT Dr & Mom
- CT NOW: Mommy Minute
- Health Watch: Dr. Brenda Balch, Lisa Saunders, and Cindy Barry discuss cCMV
- Mystic River Press: Saunders seeks help with CMV ‘silent virus’ prevention bill
- Hartford Courant: Mother Working to Protect Pregnant Moms From Dangerous Virus
- AP article went worldwide mentioning CT Senate failed to vote on CMV Bill: Silent virus a rare, dangerous risk for the unborn
2009
- Lisa on USA 9 News
- Times Herald Record: What every pregnant woman needs to know
FOR IMMEDIATE RELEASE
DATE: June 4, 2015
CONTACT: Lisa Saunders
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."
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.
“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:http://www.cdc.gov/cmv/index.
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
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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).
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