Friday, April 25, 2014

Need health topic for your TV/radio show or print media?

I am the parent representative of the Congenital CMV Foundation and am trying to prevent other moms from passing along the #1 birth defects virus, congenital cytomegalovirus (CMV), which causes more birth defects than Down syndrome. For more information about my CMV prevention work, see my short TV interview at Fox CT news.


Utah finally passed a law requiring education, especially in daycare centers. The state where I now live, Connecticut, is currently considering passing a similar bill after I brought Utah's bill to their attention (see CT's House Bill 5147).

Congenital CMV can be prevented if women of childbearing age learn the precautions to take, which includes refraining from kissing their toddlers around the mouth or sharing food with them. A study in done in France concluded that a prevention message does indeed reduce the chances of a pregnant women passing this debilitating virus onto her unborn.
 
According to a study posted on the Centers for Disease Control and Prevention (CDC) website, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection” despite the following statistics from the CDC:
 
  • ·        About 1 in 150 children is born with congenital CMV infection (approximately 30,000 in the U.S. each year).
 
 
According to an article co-authored by Dr. Cannon of the CDC, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”
 
My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter was born. Then 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 preschoolers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. 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. She was born with a very small damaged brain with calcium deposits throughout. She was quadriplegic from cerebral palsy, was unable to speak or even hold  up her head. She was cortically blind and suffered for progressive hearing loss and epilepsy. She died at the age of 16 during a seizure after enduring several surgeries including spinal fusion.  
 
I have been trying to raise CMV awareness through my speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently my travel memoir,  Mystic Seafarer’s Trail, where I embarked on a long, winter voyage with blind sailor hoping the adventure would make me thin and famous like Amelia Earhart (who was secretly married near Mystic), so people would listen to my CMV prevention message.
 
 
 To learn more about me, visit: www.authorlisasaunders.com or see this  USA 9 News clip

 
Thank you!
 
Lisa Saunders
P.O Box 389
Mystic, CT 06355
 
 
 

Thursday, April 24, 2014

HB 5147 and Fox CT

I sent the following similar email to Speaker of the House Brendan Sharkey hoping to get him to bring House Bill 5147 to a vote. Can you think of anything else I can do? I have been asked to keep the Fox CT reporter up to date on the progress of the bill. Here is our  segment that aired on Monday: Fox CT news.
 
Sarah Cody of Fox CT interviewed me, as parent representative of the Congenital CMV Foundation, and Brenda Balch, MD, Connecticut's AAP EHDI (Early Hearing Detection and Intervention) Chapter Champion on cytomegalovirus and House Bill 5147.
 As of Thursday May 1, 11:45 a.m., this is the latest progress I see on House Bill 5147:
 
4/10/2014
(LCO)
File Number 494
 
4/10/2014
House Calendar Number 287
 
4/10/2014
Favorable Report, Tabled for the Calendar, House
 
4/10/2014
(LCO)
Reported Out of Legislative Commissioners' Office
 
Although there is a small cost for education ($40,000 the first year for brochures, then less every year afterwards), the cost of not doing anything is much larger. After my daughter Elizabeth died at age 16 from complications of congenital cytomegalovirus, I calculated that her special public school education--estimated at $40,000/per--plus spinal fusion, hip reconstruction and other surgeries came to $700,000. I had no way of estimating what all her additional therapy services and emergency room visits cost the state for 16 years.
According to an article co-authored by Dr. Cannon of the CDC, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.” (Recent estimates put the cost of caring for these children at $4 billion per year.)
I didn’t know how to prevent contracting CMV (cytomegalovirus), which causes more disabilities than Down syndrome, until it was too late for  Elizabeth born with a severely damaged brain, cerebral palsy, cortical blindness and ever worsening hearing and epilepsy. 
My OB/GYNs didn’t tell me how to prevent congenital CMV until after she was born. Then 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 preschoolers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. 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.
Congenital CMV can be prevented if women of childbearing age learn the precautions to take, which includes refraining from kissing their toddlers around the mouth. According to a study posted on the Centers for Disease Control and Prevention (CDC) website, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection” despite the following statistics from the CDC:
 
·         ·        About 1 in 150 children is born with congenital CMV infection (approximately 30,000 in the U.S. each year).
·         ·        Congenital CMV causes one child to become disabled every hour. Click for the CDC’s prevention tips.
 
On March 25, the Public Health Committee voted in favor of House Bill 5147 (I came to Harford to testify in favor of the bill on February 28). At present, Utah is the only state that requires their Public Health Department to provide CMV education (Utah’s law went into effect in July 2013). Please become the second state in the country to care about protecting babies from this largely preventable leading viral cause of birth defects.
I have been trying to raise CMV awareness for years through my speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently my humorous and historical travel memoir, Mystic Seafarer’s Trail, where I joke I'm trying to get thin and famous like Amelia Earhart (who was secretly married in Noank), so people would listen to my CMV prevention message. For more information, please see my interview at: Fox CT news.
Thank you for your attention to this matter.
 
Lisa Saunders
PO Box 389
 
Mystic, CT 06355




 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 
 
 

Wednesday, April 16, 2014

Help Moms Stop # 1 Birth Defects Virus

I'm trying to prevent other moms from passing along the #1 birth defects virus, congenital cytomegalovirus (CMV), which causes more birth defects than Down syndrome. Utah finally passed a law requiring education, especially in daycare centers. The state where I now live, Connecticut, is currently considering passing a similar bill after I brought Utah's bill to their attention.
 
Perhaps you can tell your readers and friends about this virus and encourage them to help others become educated.
 
Below my signature is the press release I had sent out to Connecticut media (I also sent it to the New York Times, but didn't get a response).
 
Thanks!
 
Lisa Saunders
PO Box 389
Mystic, CT 06355
Cell: 845-222-8593
 
 
 
Mother Asks Connecticut to Become Second State to Stop #1 Birth Defects Virus
 
 
House Bill 5147 includes Cytomegalovirus (CMV) Public Education Program 
 
Mystic, Conn.— Lisa Saunders of Mystic didn’t know how to prevent contracting CMV (cytomegalovirus), which causes more disabilities than Down syndrome, until it was too late for her daughter Elizabeth born with a severely damaged brain.
 
On March 25, Connecticut’s Public Health Committee voted in favor of House Bill 5147, which includes a cytomegalovirus (CMV) public education program. At present, Utah is the only state that requires their Public Health Department to provide CMV education (Utah’s law went into effect in July 2013).
 
Saunders, the parent representative of the Congenital CMV Foundation, is now asking legislators to make Connecticut the second state in the Union to prevent the leading viral cause of birth defects by passing HB 5147. Congenital CMV can be prevented if women of childbearing age learn the precautions to take, which includes refraining from kissing their toddlers around the mouth.
 
According to a study posted on the Centers for Disease Control and Prevention (CDC) website, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection” despite the following statistics from the CDC:
 
  • ·        About 1 in 150 children is born with congenital CMV infection (approximately 30,000 in the U.S. each year).
  • ·        Congenital CMV causes one child to become disabled every hour.
 
 
According to an article co-authored by Dr. Cannon of the CDC, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”
 
Saunders testified in Hartford to the Public Health Committee on February 28 asking them to support HB 5147. Several medical doctors, including a Yale professor and other medical professionals and parents, sent in testimony letters of support.
 
Saunders said in her testimony, “My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter was born. Then 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 preschoolers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. 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.”
 
Saunders has been trying to raise CMV awareness for years through her speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently her humorous and historical adventure guide, Mystic Seafarer’s Trail, where she jokes she's trying to get thin and famous like Amelia Earhart (who was secretly married in nearby Noank), so people would listen to her CMV prevention message. For more information about Lisa Saunders and her CMV work, see her short TV interview in this USA 9 News clip or visit Saunders at: www.authorlisasaunders.com.
 
 
 
###
To learn more about cytomegalovirus (CMV) and the need for education:
 
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 a parent support group. 
 
 
Dr. Brenda K. Balch, MD, Connecticut's AAP EHDI (Early Hearing Detection & Intervention) Chapter Champion. bkbalch@sbcglobal.net
 
 
 Ronda Menlove, Utah House of Representatives and Senior Vice Provost, Utah State University, ronda.menlove@usu.edu
 
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, smcvicar@utah.gov
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus), sara@doutreconsulting.com  
 
Janelle Greenlee, President and Founder of Stop CMV - The CMV Action Network, which is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. StopCMV.org, janelle@stopcmv.org
 
 
Eugene D. Shapiro, M.D. , Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, eugene.shapiro@yale.edu
Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu
 
Lisa Saunders, Congenital CMV Foundation parent representative, CMV blogger at;http://congenitalcmv.blogspot.com She can be contacted at PO Box 389, Mystic, CT 06355, 845-222-8593, saundersbooks@aol.com,. For more information about the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine, contact Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org.

Sunday, April 13, 2014

Congenital Cytomegalovirus (CMV) Questions and Answers


Congenital (present at birth) Cytomegalovirus (CMV) Questions and Answers


See below for the answers to the following questions:


1.      What is cytomegalovirus(sī-to-MEG-a-lo-vī-rus), also referred to as CMV?

2.      Is CMV "contagious?  How do people "get" CMV?

3.      Who does CMV Harm?

4.      How common is congenital (present at birth) CMV in the United States?

5.      What are the symptoms of congenital CMV?

6.      What is the cost of caring for children disabled by congenital CMV?

7.      How do the birth defects caused by congenital CMV compare to the other well-known causes of disabilities such as Down syndrome and toxoplasmosis?

8.      Can you prevent congenital CMV in any way?

9.      Are pregnant women told about CMV? If not, why not?

10.  Can children who appeared healthy at birth have disabilities a year later as a result of congenital CMV? Can you still determine if congenital CMV was the cause of these disabilities if not tested for it a birth?

11.  Can you treat CMV in any way?

12.  What percent of women of child-bearing age know about CMV?

13.  Knowing what you do, what would you do differently before becoming pregnant and during pregnancy?

 

 

Who I am and how congenital CMV affected my family:
I am the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). OB/GYNs didn’t tell me how to prevent CMV until after my severally brain-damaged daughter Elizabeth was born. Then I learned that those working in daycare, or have a child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Women working in daycare, or who have a child in daycare, are still not routinely warned of the precautions to take when caring for small children.


In milder cases, children born with congenital CMV may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was quadriplegic from cerebral palsy, cordically blind, gradually losing her hearing, and suffered from frequent pneumonia, major surgeries and ever-worsening epilepsy. She died during a seizure at 16.
I support the passing of Connecticut's
HB 5147. Medical doctors, including a Yale professor and other medical professionals and parents, support the passing of this bill as well.
 

 

1.      What is cytomegalovirus(sī-to-MEG-a-lo-vī-rus), also referred to as CMV?

·         CMV, or cytomegalovirus is a common virus. Like chicken pox, it’s in the herpes family.

·         Most infections with CMV are “silent,” meaning most people who are infected with CMV have no signs or symptoms.

·         Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age

·         CMV is a virus that is found in all parts of the world. For someone with HIV or AIDS, CMV can cause retinitis (blurred vision and blindness), painful swallowing, diarrhea, and pain, weakness, and numbness in the legs.

 
2.      Is CMV "contagious?  How do people "get" CMV?

·         Person to person contact (kissing, sexual contact, getting saliva or urine on hands and then touching eyes, or the inside of nose or mouth)

·         Infected pregnant women can pass the virus to their unborn babies

·         Blood transfusions and organ transplantations

 
3.      Who does CMV Harm?

·         CMV can cause disease in unborn babies

·         CMV may cause severe and occasionally life-threatening disease in immunocompromised persons (meaning people with weakened immune systems), such as:

·         Organ and bone marrow transplant recipients,

·         Cancer patients

·         Patients receiving immunosuppressive drugs, and

·         HIV-infected patients

 
4.      How common is congenital (present at birth) CMV in the United States?

·         About 1 in 150 children is born with congenital CMV infection

·         Each year, about 30,000 children are born with congenital CMV infection

·         Every hour, congenital CMV causes one child to become disabled

·         About 8,000 children each year suffer permanent disabilities caused by CMV

·         About 1 in 5 of congenitally infected children is permanently disabled.

·         About 1 in 750 children is born with or develops permanent disabilities due to CMV
 
 

For every 1000 pregnancies that result in a LIVE birth, about 1 to 2 babies will have permanent CMV-related problems.


 

5.      What are the symptoms of congenital CMV?


Temporary Symptoms
Liver problems
Spleen problems
Jaundice (yellow skin and eyes)
Purple skin splotches
Lung problems
Small size at birth
Seizures

Permanent Symptoms or Disabilities
Hearing loss
Vision loss
Mental disability
Small head
Lack of coordination
Seizures
Death
6.      What is the cost of caring for children disabled by congenital CMV?

According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”

7.      How do the birth defects caused by congenital CMV compare to the other well-known causes of disabilities such as Down syndrome?

8.      Can you prevent congenital CMV in any way?

·         Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

·         Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions (the virus lasts approximately 30 minutes on surfaces)

·         Don’t share food, drinks, or eating utensils with young children

·         Don’t kiss young children on the lips—give them a big hug and a kiss on top of the head.

·         If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

 
9.      Are pregnant women told about CMV? If not, why not?  

·         Less than half of OB/GYNs surveyed said they counseled their patients on how to prevent CMV infection (surveyed by the American College of Obstetricians and Gynecologists in 2007)

·         OB/GYN’s Don’t realize the prevalence of congenital CMV. In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.”

·         An OB/GYN quoted in FitPregnancy magazine (June/July '08) said, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

 
10.  Can children who appeared healthy at birth have disabilities a year later as a result of congenital CMV? Can you still determine if congenital CMV was the cause of these disabilities if not tested for it a birth?

To know if a child has disabilities caused by congenital CMV, they would have needed to be tested for it by three weeks of age.

11.  Can you treat CMV in any way?

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.  It is now recommended for newborns with symptomatic CMV disease at birth and even those that appear healthy yet fail their newborn hearing screens b/c deafness. Valganciclovir is recommended by CMV experts for symptomatic newborns now, it is well tolerated, with side effects of low blood counts in 20% that is monitored for, and is covered by most insurance plans and Medicaid now.

CMV infections in other patient with immune dysfunction can be treated as well.

Pregnant women with primary CMV infection during pregnancy can receive a controversial hyperimmune globulin treatment to protect the fetus from CMV, or enroll in a clinical trial to assess whether or not this treatment is effective:  A Randomized Trial to Prevent Congenital Cytomegalovirus (CMV)

12.  What percent of women of child-bearing age know about CMV?

 22% of women surveyed.

 


13.  Knowing what you do, what would you do differently before becoming pregnant and during pregnancy?

I would have a blood test to determine if I had an active infection or if I had immunity to the disease from a prior infection. If I had an active infection, I would wait for a doctor to clear me to get pregnant. If I had never had it before, I would not work with young children in daycare and I would be careful not to kiss my toddler around the mouth or share food with  her.

I wish I had heard of CMV and that it causes miscarriages and birth defects before or with my pregnancy. If I had heard of CMV, I wish I had known about the currently recommended CMV precautions that may reduce the risk of transmission of CMV to me during pregnancy from toddlers and others close to me in my family and in the day care or home care setting.
 
I wish I had not first heard of CMV after the birth of my child.
 
Everyone has heard not to change the kitty litter when pregnant (toxoplasmosis). I wish everyone would hear how to prevent congenital CMV by not kissing babies around the mouth or sharing food.


The prevalence of congenital toxoplasmosis is estimated to be between 1 of 12,000 live births [based on Massachusetts newborn screening data-the only state or one of the few states that screens for toxoplasmosis at birth] to as high as 5 per 1,000 births in the US. 
 
It is much less frequent than congeital CMV infection and congenital CMV disease.

 

Tuesday, April 1, 2014

Ask CT Legislators to Pass H.B. 5147

Connecticut's Public Health Committee supports a bill, HB 5147, requiring that women be given a chance to learn how to prevent the #1 birth defects virus from happening to their unborn child. Cytomegalovirus (CMV) causes more disabilities than Down syndrome, but women aren't routinely educated on how to prevent it by their OB/GYNs or daycare centers (where a large percentage of children under three are infected with the "silent" virus). If you would like to see it become a law that daycare workers and women of child-bearing age are taught how to prevent it, please take the time to write some form of the following letter: (find your local representative at: http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp and your senator at: http://www.senatedems.ct.gov/find/findlegislator.asp):

 
Dear Representative or Senator,
I write this letter to show my support of HB 5147 to increase awareness of congenital CMV (Cytomegalovirus).
 
You may not currently have a pregnant daughter, daughter-in-law, niece, granddaughter, neighbor, or friend, but chances are you will at some point in your lifetime.  No mother should have to find out after giving birth that they had passed a preventable virus to their baby before birth. 
 
According to the CDC, this heartbreak is experienced every hour .  You have the ability to help mothers of unborn babies to be educated about congenital CMV so that they can avoid this devastation. By passing HB 5147, Connecticut is setting an important precedent for every other state in this country (Utah is the only other state to pass a similar bill).  The only way for change to occur is one step at a time, and I believe this is an extremely important step for CMV awareness. 
 
Congenital CMV is a preventable virus and women should be properly educated about the simple hygiene precautions they can take while  pregnant.  Medical studies have proven that following three simple hygiene precautions can reduce the chance of catching the virus by 50%.  
3 Simple Hygiene Precautions for Pregnant Women:
 
1. Do not share food or drinks with a toddler.
2. Don’t kiss a child under 6 years of age on the lips. Instead, kiss them on the top of the head and give them a big hug.
3. Wash your hands often with soap and water for 15—20 seconds especially after changing diapers, wiping noses or drool, and handling toys. 
 
The important thing to note is that these hygiene precautions are not obvious for mothers and most likely will not be followed without proper education.  Four hundred babies die each year in the U.S. due to complications from congenital CMV and the other 8,000 per year live a lifetime of suffering with developmental disabilities, hearing loss, vision loss, cerebral palsy, and many other devastating effects.  
 
I ask you to please do everything in your power to support  HB 5147.

Best Regards,
 
NAME/ADDRESS


I wrote everyone in the House and Senate an email asking them to pass it. Here is the letter I sent:

Dear [House/Senate member]*
I am Lisa Saunders of Mystic, Conn., and came to testify in favor of HB 5147, in particular cytomegalovirus (CMV) education, on Feb. 28 (my daughter suffered and died because I didn’t know how to protect her from it when I ran a licensed daycare center). A similar bill was passed in Utah last summer.  Connecticut women still don't know the precautions to take in a daycare center as Connecticut doesn't require those working--or seeking a license--in daycare to be educated on that matter.

CMV is the #1 birth defects virus and causes more disabilities than Down syndrome, yet most women aren’t educated in how to prevent it. Less than half of OB/GYNs surveyed **said they counseled their patients on how to prevent CMV infection, despite these U.S. statistics from the CDC:

•Congenital CMV causes one child to become disabled every hour.

•About 1 in 150 children is born with congenital CMV infection each year (approximately 30,000).

According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”

I am the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). If you need any further information, or to contact CMV doctors and health department professionals, I would be happy to help (see below my signature for some helpful contacts).***

 

You will see from HB 5147’s testimony letters that medical doctors, including a Yale professor and other medical professionals and parents, support the passing of this bill.
OB/GYNs didn’t tell me how to prevent CMV until after Elizabeth was born. Then I learned those working in daycare, or have a child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Mothers must wash their hands after handling toys and should not kiss their toddlers around the mouth.  While I was pregnant, I had a toddler plus ran a licensed daycare center. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was quadriplegic from cerebral palsy, was cordically blind and losing her hearing, and suffered from frequent pneumonia, major surgeries and ever-worsening epilepsy. She died during a seizure at 16.
Please do your part to shout CMV prevention from the rooftops by passing this bill. This needs to become as well-known as the "don't change the kitty litter" rule when pregnant. I have been trying for years to raise awareness through speaking engagements, USA 9 News and my books, including my most recent travel memoir, Mystic Seafarer’s Trail, where I joke the reason I’m trying to get thin and famous like Amelia Earhart (she was secretly married in Noank) is so people will listen to my CMV prevention message.
Once Utah passed their cytomegalovirus education bill, I finally found hope that the rest of the country would find it easier to follow suit.
Thank you in advance for you attention on this matter.
Sincerely,                 
Lisa Saunders
PO Box 389
Mystic, CT 06355
 
* How a Bill Becomes a Law (in CT)
Senate Members: http://www.cga.ct.gov/asp/menu/slist.asp



Elissa.Wright@cga.ct.gov, Susan.Johnson@cga.ct.gov, gerratana@senatedems.ct.gov, Philip.Miller@cga.ct.gov, prasad.srinivasan@cga.ct.gov, slossberg@senatedems.ct.gov, Emmett.Riley@cga.ct.gov, Alexander@cga.ct.gov, David.Arconti@cga.ct.gov, Whit.Betts@housegop.ct.gov, Michelle.Cook@cga.ct.gov, Theresa.Conroy@cga.ct.gov, Christopher.Davis@housegop.ct.gov, Mike.Demicco@cga.ct.gov, Gary.Holder-Winfield@cga.ct.gov, Rob.Kane@cga.ct.gov, Themis.Klarides@housegop.ct.gov, James.Maroney@cga.ct.gov, Musto@senatedems.ct.gov, Jason.Perillo@housegop.ct.gov, Kevin.Ryan@cga.ct.gov, Peggy.Sayers@cga.ct.gov, david.scribner@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Patricia.Widlitz@cga.ct.gov, Melissa.Ziobron@housegop.ct.gov, David.Zoni@cga.ct.gov, Philip.Miller@cga.ct.gov, Jason.Welch@cga.ct.gov, Debralee.hovey@cga.ct.gov, Catherine.Abercrombie@cga.ct.gov, tim.ackert@housegop.ct.gov, al.adinolfi@housegop.ct.gov, Mike.Alberts@housegop.ct.gov, james.albis@cga.ct.gov, Emil.Altobello@cga.ct.gov, Bill.Aman@cga.ct.gov, Angel.Arce@cga.ct.gov, Joe.Aresimowicz@cga.ct.gov, Penny.Bacchiochi@housegop.ct.gov, Terry.Backer@cga.ct.gov, David.Baram@cga.ct.gov, Brian.Becker@cga.ct.gov, sam.belsito@housegop.ct.gov, Jeffrey.Berger@cga.ct.gov, Betty.Boukus@cga.ct.gov, Tim.Bowles@cga.ct.gov, Cecilia.Buck-Taylor@housegop.ct.gov, Larry.Butler@cga.ct.gov, Lawrence.Cafero@housegop.ct.gov, Fred.Camillo@housegop.ct.gov, Juan.Candelaria@cga.ct.gov, christie.carpino@housegop.ct.gov, dan.carter@housegop.ct.gov, Jay.Case@housegop.ct.gov, Charles.D.Clemons@cga.ct.gov, Theresa.Conroy@cga.ct.gov, Victor.Cuevas@cga.ct.gov, Michael.DAgostino@cga.ct.gov, Anthony.DAmelio@housegop.ct.gov, Stephen.Dargan@cga.ct.gov, Paul.Davis@cga.ct.gov, christopher.davis@housegop.ct.gov, Patricia.Dillon@cga.ct.gov, Joe.Diminico@cga.ct.gov, Patricia.Dillon@cga.ct.gov, Mike.Demicco@cga.ct.gov, Lou.Esposito@cga.ct.gov, Kim.Fawcett@cga.ct.gov, Andrew.Fleischmann@cga.ct.gov, Mae.Flexer@cga.ct.gov, Livvy.Floren@housegop.ct.gov, Dan.Fox@cga.ct.gov, Gerald.Fox@cga.ct.gov, John.Frey@housegop.ct.gov, Mary.Fritz@cga.ct.gov, henry.genga@cga.ct.gov, Linda.Gentile@cga.ct.gov, Janice.Giegler@housegop.ct.gov, Marilyn.Giuliano@housegop.ct.gov, Bob.Godfrey@cga.ct.gov, Minnie.Gonzalez@cga.ct.gov, Auden.Grogins@cga.ct.gov, Tony.Guerrera@cga.ct.gov, Gregory.Haddad@cga.ct.gov, John.Hampton@cga.ct.gov, Jack.Hennessy@cga.ct.gov, Ernest.Hewett@cga.ct.gov, Laura.Hoydick@housegop.ct.gov, Tony.Hwang@housegop.ct.gov, Claire.Janowski@cga.ct.gov, Ed.Jutila@cga.ct.gov, David.Kiner@cga.ct.gov, Themis.Klarides@housegop.ct.gov, Noreen.Kokoruda@housegop.ct.gov, brenda.kupchick@housegop.ct.gov, David.Labriola@housegop.ct.gov, Timothy.Larson@cga.ct.gov, gail.lavielle@housegop.ct.gov, Tim.LeGeyt@housegop.ct.gov, roland.lemar@cga.ct.gov, Matthew.Lesser@cga.ct.gov, Rick.Lopes@cga.ct.gov, Geoff.Luxenberg@cga.ct.gov, Lezlye.Zupkus@housegop.ct.gov, James.Maroney@cga.ct.gov, Douglas.McCrory@cga.ct.gov, Brandon.McGee@cga.ct.gov, Robert.Megna@cga.ct.gov, Steve.Mikutel@cga.ct.gov, Philip.Miller@cga.ct.gov, Lawrence.miller@cga.ct.gov, Patricia.Miller@cga.ct.gov, Craig.Miner@housegop.ct.gov, michael.molgano@housegop.ct.gov, Russell.Morin@cga.ct.gov, Bruce.Morris@cga.ct.gov, Edward.Moukawsher@cga.ct.gov, Mary.Mushinsky@cga.ct.gov, Sandy.Nafis@cga.ct.gov, Frank.Nicastro@cga.ct.gov, Selim.Noujaim@housegop.ct.gov, Tom.ODea@housegop.ct.gov, Arthur.ONeill@housegop.ct.gov, Linda.Orange@cga.ct.gov, jason.perillo@housegop.ct.gov, Chris.Perone@cga.ct.gov, John.Piscopo@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov, Lonnie.Reed@cga.ct.gov, Elizabeth.Ritter@cga.ct.gov, Matthew.Ritter@cga.ct.gov, Jason.Rojas@cga.ct.gov, Kim.Rose@cga.ct.gov, Danny.Rovero@cga.ct.gov, David.Rutigliano@housegop.ct.gov, rob.sampson@housegop.ct.gov, Bobby.Sanchez@cga.ct.gov, Hilda.Santiago@cga.ct.gov, Ezequiel.Santiago@cga.ct.gov, Pamela.Sawyer@housegop.ct.gov, David.Scribner@housegop.ct.gov, Brian.Sear@cga.ct.gov, Joseph.Serra@cga.ct.gov, john.shaban@housegop.ct.gov, J.Brendan.Sharkey@cga.ct.gov, bill.simanski@housegop.ct.gov, richard.smith@housegop.ct.gov, Charlie.Stallworth@cga.ct.gov, Jonathan.Steinberg@cga.ct.gov, William.Tong@cga.ct.gov, Diana.Urban@cga.ct.gov, Edwin.Vargas@cga.ct.gov, Joe.Verrengia@cga.ct.gov, Tom.Vicino@cga.ct.gov, Toni.Walker@cga.ct.gov, Stephen.Walko@housegop.ct.gov, Sean.Williams@housegop.ct.gov, Roberta.Willis@cga.ct.gov, Terrie.Wood@housegop.ct.gov, Christopher.Wright@cga.ct.gov, dave.yaccarino@housegop.ct.gov, Toni.Boucher@cga.ct.gov, Clark.Chapin@cga.ct.gov, Duff@senatedems.ct.gov, Len.Fasano@cga.ct.gov, Scott.Frantz@cga.ct.gov, Anthony.Guglielmo@cga.ct.gov, Hartley@senatedems.ct.gov, Holder-Winfield@senatedems.ct.gov, Kevin.Kelly@cga.ct.gov, John.A.Kissel@cga.ct.gov, Art.Linares@cga.ct.gov, Joe.Markley@cga.ct.gov, John.McKinney@cga.ct.gov, Michael.McLachlan@cga.ct.gov, Kevin.Witkos@cga.ct.gov, Bartolomeo@senatedems.ct.gov, Bye@senatedems.ct.gov, Cassano@senatedems.ct.gov, Coleman@senatedems.ct.gov, Doyle@senatedems.ct.gov, Fonfara@senatedems.ct.gov, Kevin.Kelly@cga.ct.gov, LeBeau@senatedems.ct.gov, Leone@senatedems.ct.gov, Looney@senatedems.ct.gov, Joe.Markley@cga.ct.gov, Maynard@senatedems.ct.gov, John.McKinney@cga.ct.gov, Michael.McLachlan@cga.ct.gov, Meyer@senatedems.ct.gov, Osten@senatedems.ct.gov, Stillman@senatedems.ct.gov, williams@senatedems.ct.gov, Kevin.Witkos@cga.ct.gov,

**Here is one reason an OB/GYN from Boston gives as to why women aren't routinely counseled about CMV:
Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(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
 
***To learn more about cytomegalovirus (CMV) and the need for education:
 
Dr. Brenda K. Balch, MD  is Connecticut's AAP EHDI (Early Hearing Detection & Intervention) Chapter Champion and has a strong interest in CMV as congenital CMV is a major cause of hearing loss. bkbalch@sbcglobal.net
 

Eugene D. Shapiro, M.D. , Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, eugene.shapiro@yale.edu

 
Lisa Saunders, Congenital CMV Foundation parent representative, PO Box, 389, Mystic, CT 06355, saundersbooks@aol.com
 
Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu
From the CDC: Michael Cannon, Ph.D. mrc7@cdc.gov, is a research epidemiologist at the Centers for Disease Control, Atlanta, Georgia. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.

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 a parent support group.
 
For more information about the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine, contact Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org.
 
Ronda Menlove, Utah House of Representatives and Senior Vice Provost, Utah State University, ronda.menlove@usu.edu
 
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, smcvicar@utah.gov
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus), sara@doutreconsulting.com  
 
Janelle Greenlee, President and Founder of Stop CMV - The CMV Action Network, which is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. StopCMV.org, janelle@stopcmv.org

Fox News Announces Utah First State in Nation to Provide CMV Education: http://fox13now.com/2013/07/07/utah-takes-action-against-virus-that-harms-unborn-children/ 
"Legislation was passed in Utah, and now The Utah Department of Health is required to educate women about the dangers of CMV in pregnancy as well as ways to prevent it." The reporter on this was Mark Green, mark.green@fox13now.com (It was because of this above news that I found out about Utah's bill. I then gave the link to the bill and the book about my daughter to my local representative who lives in Noank. She then wrote a letter to the Co-Chair of the Connecticut Public Health Committee asking her to present a similar bill in Connecticut.)