Lisa Saunders & Mystic Seafarer's Trail

Lisa Saunders

Author, TV talk show host, and CMV fighter

Stop #1 birth defects virus--congenital cytomegalovirus (cCMV)!

Lisa's younger daughter Elizabeth (1989-2006) was born with microcephaly (severely brain-damaged) because of cCMV 

"During my pregnancy, none of my doctors warned me about CMV and how to protect my developing baby, such as refraining from sharing food or drinks with my toddler. If I had known I was at increased risk because I ran a licensed day care center in my home, I would have asked for a blood test to determine if I had ever had CMV before. If not, I would have only accepted children over 2 1/2 years of age into my home day care center or not provided day care at all. It hurts to think how my daughter's life could have turned out had I known how to protect her." Lisa Saunders, parent representative of the Congenital Cytomegalovirus Foundation.

I am Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (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 three books about congenital CMV:

Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus) (my memoir about my daughter's life).

Survivng Loss: The Wooder's Tale: //www.amazon.com/Surviving-Loss-Woodcutters-Lisa-Saunders/dp/1482315505/ref=sr_1_21?s=books&ie=UTF8&qid=1479404852&sr=1-21

Once Upon a Placemat--A table setting tale: //www.amazon.com/dp/1540359921/ref=sr_1_2?ie=UTF8&qid=1479249421&sr=8-2&keywords=once+upon+a+placemat 

I collaborate with health care providers, childcare providers, and the medical community to help raise awareness for CMV prevention. Raising awareness not only saves heartache, it saves money: “In the early 1990s, the expense to the US health care system associated with congenital H[human]CMV infection was estimated at approximately $1.9 billion annually, with an average cost per child of over $300,000” (Arvin et al. 2004).


About 1 in 150 children is born with congenital CMV infection, and about 20% percent of those are permanently 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: //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.

Why don’t doctors warn women of childbearing age about congenital CMV?

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,” according to “Washing our hands of the congenital cytomegalovirus disease epidemic.”

How many know about congenital CMV?

Only 7% of  men and 13%  of women surveyed had heard of congenital CMV.

Will it make a difference if women are educated on CMV prevention?

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.  It is not likely that isolated instances of exposure to saliva or drool will result in transmission. Most studies suggest prolonged repeated exposures over time are important for CMV transmission.”

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.

To educate families in a fun and memorable way, I just published the short book, “Once Upon a Placemat: A Table Setting Tale,”  which comes with a free downloadable program kit, which includes:


1.Video of author Lisa Saunders introducing book, germ prevention and tableware characters at: //youtu.be/_0jDOKPFg4M


2.Placemats with tableware characters and germ prevention tips at: //drive.google.com/file/d/0B9Klfxar2CmjZUNDdHFwQkVmbWs/view?usp=sharing (there are several placemat versions to provide organizations a space to insert their own logo/information before distributing). 

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: //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://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). 

Saunders, an award-winning writer and graduate of Cornell University, is also the author of the children's novel, Ride a Horse Not an Elevator, used by Cornell in their state-wide 4-H program. She is a TV talk show hostthe author of seven books, history columnist for Pathfinder magazine, a part-time historical interpreter at Mystic Seaport, and member of the Daughters of the American Revolution, Anna Warner Bailey Chapter (Lisa descends from Captain Henry Gale of the American Revolution, a leader in Shays' Rebellion sentenced to hang for treason. Shays' Rebellion led to the U.S. Constitution, which Lisa highlights in her book, Shays' Rebellion: The Hanging of Co-Leader, Captain Henry Gale). Visit Lisa Saunders at: //www.authorlisasaunders.com/


 

Note from Lisa Saunders:

My work on CMV also includes:

One page interview about all of my work, with the most important being CMV related.

 

Letter from Cornell president includes appreciation for my work with Congenital CMV Foundation.

 

 
Other (and just for fun): Letter from U.S. Senator congratulating me for my "Samuel Adams Stein Hoisting" win. I had sent a press release about my win to the papers in hopes of amusing people that the real Sam Adams had wanted my ancestor hanged for treason for his leadership role in Shays' Rebellion after the American Revolution.I was hoping to use that attention to get interest in congenital CMV. My book, Shays' Rebellion: The Hanging of Co-Leader, Captain Henry Gale, includes information about congenital CMV. I had written the U.S. Senator back thanking him for taking the time to have some fun, but I also asked if there was anyway he could help me with my real cause, CMV legislation. (Thank kind of work isn't what they do, but I thought I'd try!). My other "back door" attempt at raising CMV awareness was trying to get thin and famous like Amelia Earhart, which I discuss in my book, "Mystic Seafarer's Trail," so people would listen to me about CMV. Earhart was married near me. Although I abandoned ship when sailing with a blind sailor, which I did in hopes of getting media attention (ultimately for CMV), my work on the Amelia Earhart chapter of the book got the attention of Connecticut Magazine. Our connection over Earhart led the a great article they did on my dream that started my passion for congenital CMV work. So, sometimes my backdoor methods of getting CMV attention do work! Now that there is finally a CMV law in Connecticut, I don't have to get thin and famous anymore (at least not in Connecticut!). The following TV news segment conveys what I went through during the 2014 legislative session and again in 2015 (because the Senate failed to vote on the bill in 2014): News 8 at CT Capitol RE: CMV.

 

WANT CMV BILL IN YOUR STATE?

If you want to get a CMV bill passed in your state, as it was in Utah and now Connecticut, see my blog post: Tool Kit to Get a CMV Law in Your State

What is congenital Cytomegalovirus (cCMV)?

The #1 viral cause of birth defects. It causes more disabilities than Down syndrome and is the most common cause of nonhereditary sensorineural hearing loss in childhood. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.:

  •        Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year).
  •        Approximately 1 in 750 babies born are permanently disabled by cCMV

                                                    

Why don’t doctors warn women of childbearing age about congenital CMV?

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 National Center for Biotechnology Information article, “Washing our hands of the congenital cytomegalovirus disease epidemic,”.

 

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

Only 22% of women surveyed had heard about congenital CMV , but most in that group didn’t know how to prevent it.

 

What can our state do to protect our children from congenital CMV?

Educate public. Pass a bill similar Utah’s H.B 81 (2013) requiring the Health Department (Children's Hearing and Speech Services, click to see their brochures for doctors, parents, daycare providers) to teach CMV prevention and test newborns for cCMV if they fail two hearing screen tests so their families can be educated about the availability of early intervention services and treatment options.

 

What is the annual cost of implementing this congenital CMV education and hearing test bill?

Utah’s cost: $30,800 per year. In 2014, the cost in Connecticut was estimated at $40,000 first year, $26,000 subsequent years.

 

What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1 - 4 billion. Using a conservative $1 billion per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

 

ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children.

 

“This figure is almost certainly an underestimate, especially now with enhanced mobility aids, surgical interventions, cochlear implants, antiviral therapies, occupational and physical therapies, etc., which were not likely included in the older cost estimates,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program.

 

Which women are most at risk for contracting CMV?

 “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., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. 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 cytomegalovirus.  Day-care workers are at greater risk than people who don’t work in such a setting.

 

Will it really make a difference if women are educated on how to prevent contracting CMV?

Yes. Studies in France and the U.S. proved women educated about prevention reduced transmission to their unborn by at least 50%.

 

How can CMV be avoided? See CDC: CMV Prevention tips    

  • 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.
  • 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 21⁄2 years of age, especially if you've never been infected with CMV or don't know if you've been infected.

Can you treat cCMV? “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 because of deafness,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program.

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The above fact sheet prepared by Lisa  Saunders of Mystic, Connecticut, parent representative of the Congenital CMV Foundation and author of memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV

To join Lisa's fight against cCMV, visit her CMV blog: //congenitalcmv.blogspot.com .If you want  your state to make CMV education mandatory, Lisa's blog includes sample letters, press releases and contacts. If you want to get a CMV bill passed in your state, as it was in Utah and now Connecticut, see my blog post: Tool Kit to Get a CMV Law in Your State

 

Start saving future children right now!  

 

Contact your House and Senate representatives and ask them to present a bill similar to Utah's to their Public Health Committee.  Click here to find your state/territory website: Congenital CMV and Your State/Territory Representatives. Your state's website will also have a link showing you how a bill becomes a law. (After you contact your own House and Senate representative, you will want to start the work of gathering the email address of every representative in your state.)

I got a lot of initial advice on who to reach and how from my Town Clerk (the person who issues marriage and dog licenses). Gather a team of people in your state and cCMV experts willing to be contacted. Get ideas of who to collaborate with from here: 
Congenital Cytomegalovirus (CMV) Contacts for Connecticut, Utah and U.S.

When possible, it's always best to see your representatives in person, but for those caring for a critically ill child, that's almost impossible so e-mails and calls will do (calls are great if you can do it because they/their staff will be forced deal with you and will start talking about cCMV to each other if they get a lot of calls from your friends and family).

I just met with my newly elected representative (who takes office in Jan. 2015) and handed him a little paper folder (with pockets for his convenience) with the most important information, including what it costs our state to take care of children disabled by congenital CMV. Representatives need to know this so they can explain why it's worth spending some money to see this bill pass. He will now write up the bill and present it Connecticut's Public Health Committee. If the Public Health Committee passes it after hearing/reading testimonies, then the House of Representatives will vote on it, and if they pass it, then the Senate will vote on it. If the Senate passes it before the end of the session (my Senate didn't vote it so I have to start this ALL OVER AGAIN with the Public Health Committee in 2015), then the Governor has to sign it into law for it to become a law.

This is what your state really wants to know (but may be afraid to ask you):

What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1-4 billion. Using a conservative $1 billion per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

CALCULATE COST PER STATE( or territory): Annual cost of cCMV by state: x births (X) .0013 cCMV disabled = x children born disabled by cCMV (X) $194,590/year/child= $x annually to care for  children disabled by congenital cytomegalovirus. 

(Example--ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children.)  The other thing your representative wants to know is will you gather your friends and family to testify (through writing or by appearing at your state capitol) at the Public Health Committee hearing meeting?


Your representatives want as little paper as possible, so I boiled it down to the questions I was asked most last year when I tried to get this bill passed in Connecticut. Here is a pdf  of my PowerPoint on what I did and how you can do it, which includes advice on how you can get started, sample letters to politicians, what worked and what didn't work plus how I got the media to help me move the state forward. Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a series of dysfunctional pets--until a homeless old dog came to her rescue-- is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV).

The following are the type of documents you want to give your politicians and/or media (revise some of them to fit you/your state):

For additional help, see this advice from Utah--the state that actually got a cCMV bill passed.

God bless us everyone!

Sincerely,

Lisa Saunders
PO Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
www.authorlisasaunders.com

 

Lisa airs cCMV show

Loss and love: Author raises awareness about preventable birth defect 

What Every Pregnant Woman Needs to Know

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Interview about all of Lisa's work, with the most important being CMV related.
Letter from Cornell president includes appreciation for work with Congenital CMV Foundation.

 


Please feel free to use this material to educate others about preventing #1 viral cause of birth defects