Friday, February 5, 2016

Fairytale Teaches Table Setting and CMV Prevention

In honor of February being International Prenatal Infection Prevention Month, I have created a fun, free downloadable placemat for coloring that features the tableware characters from my new fairytale, Once Upon a Placemat: A Table Setting Tale. It includes infection prevention (not just prenatal infections, but others that are transmitted through saliva).
 

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.com

FOR 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.

 
"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/onceuponaplacemat/

The book is available on Amazon and Createspace.
 
For more information, visit www.authorlisasaunders.com or write to LisaSaunders42@gmail.com
 

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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/d/0B9Klfxar2CmjbHROT0Y5RG1RQ3M/view?usp=sharing

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. 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.
 

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?
 
There are certain steps everyone can take to reduce their risk of exposure to CMV and other infection. http://www.cdc.gov/cmv/prevention.html

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. How many people know about congenital CMV?


 

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.


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.


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).

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.html, or print this CDC flyer: CDC: CMV Prevention Flyer, www.congenitalcmv.org/CDCbrochure.pdf
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.
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:
  1. 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.
  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,gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides parent support.
  3. 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.
 
  1. Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov
  2. Rep. Susan Johnson, Johnson@cga.ct.gov
  3.  
  • Siemens Healthcare Diagnostics (Fall 2010 webinar and my story published in their magazine). References:
  1. Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com
  2. Theresa Spence, M.B.A., Senior Marketing Manager, Disease State Marketing, Siemens Healthcare Diagnostics, Inc., theresa.m.spence@siemens.com 
  1. Kris Magnussen, KMagnussen@llhd.org
 
MEDIA COVERAGE ON MY WORK AGAINST CONGENITAL CMV
2015:
  • 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
2013
 
2009

FOR IMMEDIATE RELEASE
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:http://www.cdc.gov/cmv/index.html

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).