Ask Your Rep. to Stop #1 Birth Defects Virus: Pass HB5147

Good news Connecticut residents! The cytomegalovirus (CMV) education bill (HB 5147)bill is now being prepared for the House and Senate to be voted on. If you have a moment, please call/email your representative and senator asking them to pass cytomegalovirus (CMV) education bill (HB 5147). This is how you and any of your CT friends (on Facebook or anywhere!) can find out who your Representative is: http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp.

Also, click here to find your senator: http://www.senatedems.ct.gov/find/findlegislator.asp

Perhaps you should also write to CT's US senators found at:

Blumenthal, Richard - (D - CT)	Class III
724 Hart Senate Office Building Washington DC 20510
(202) 224-2823
Contact: www.blumenthal.senate.gov/contact/
Murphy, Christopher - (D - CT)	Class I
303 Hart Senate Office Building Washington DC 20510
(202) 224-4041
Contact: www.murphy.senate.gov/contact

Sample letter to your Representatives:


Connecticut is now proposing House Bill 5147, which includes CMV (cytomegalovirus) education. CMV is the #1 birth defects virus, which causes more disabilities than Down syndrome, yet most women don’t know how to prevent it.

Please join others, such as this Yale professor and other medical professionals, and parents who want House Bill 5147 to pass. It's similar to the CMV education bill passed in Utah.   

This is needed because 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).

OB/GYNs didn’t tell one Mystic, Conn., mother, Lisa Saunders, how to prevent CMV until after her daughter Elizabeth was born. Then she 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.  When Lisa was pregnant, she 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 died at 16.

Lisa Saunders is the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV.

Sincerely,

Your name
address

Little known virus cuts newborn's life short

The family and friends of little Maddie inundated Connecticut's Public Health Committee with letters of testimony in support of H.B. 5147, which supports congenital cytomegalovirus (CMV) education. Although I was the only one physically in Hartford publicly testifying in favor of the bill, the Co-Chair of the Public Health Committee commented to everyone in the room about the overwhelming number (near 100) of support letters the bill received. Although many were Texas residents, their "big" voices were heard here in  New England and helped give me the "wind beneath my wings" when it was finally my turn to tell my daughter's story.

 

This is Maddie's story:

Little known virus cuts newborn's life short

 

CMV Prevention Pamphlet made in Maddie's Honor

 

You will find many of Maddie's supporters here: Click for Public Hearing Testimony 

Author Tries Getting Thin & Famous for CMV Awareness

Author Lisa Saunders Tries Epic Adventure to Get Thin and Famous

so People Will Learn  #1 Birth Defects Virus

 

Excerpts:

 

1        Wanted: Epic Adventure

 

Shortly after stepping out of my new home with my hound for our first stroll through the historic seacoast village of Mystic, Connecticut, a woman pulled over in her van and yelled, "Excuse me."

Assuming she was a tourist wanting directions to Mystic Pizza or some other attraction, I wasn't prepared for what she really wanted to know.

"Do you realize the back of your skirt is tucked into your underwear?"

What a debut in my new hometown—I don’t think this is what National Geographic meant when they named Mystic one of the top 100 adventure towns in the United States.

...

No longer did I want to be known as the lady who always talks about losing weight but never does it. No longer would I sit around daydreaming about becoming thin and famous so... I had a real shot at it now that I lived in a place where I couldn’t help but fall into a swash-buckling adventure—the kind that might inspire me to write a bestseller.

Straddling both sides of the Mystic River in the towns of Groton and Stonington, the village of Mystic takes its name from an Indian word, “river running to the sea.” With its scenic views of tall ships, islands, lighthouses, and secluded coves, it has attracted such legendary honeymooners as Humphrey Bogart and Lauren Bacall. It is a place where those who cross the oceans gather to swap stories and repair their boats. It is where famous explorers are born, visit, get married, or sadly, embark from on their way to becoming lost at sea.

To launch my career as an adventuress, I decided to walk Bailey to the haunts and homes of such celebrated adventurers as Amelia Earhart, the first woman to fly solo across the Atlantic...Maybe I could become thin and famous like Amelia Earhart. Like her, I am fairly tall, my middle initial is M, I have a gap between my two front teeth, and until I looked it up, I couldn’t spell medieval either (more on that and her wedding day later). Unlike Amelia, I wasn’t skinny, but that was about to change. I would stop lying around reading about adventurers and do what it took to become one. 

 

... 

I felt affection for Matilda, a little two-year-old girl who drowned on New Year’s Day in 1858. There was no mystery why I found comfort visiting her grave—it reminded me of visiting our daughter Elizabeth’s grave, which we had to leave behind in New York. Elizabeth died in 2006 at the age of 16 during a seizure.

Although Elizabeth was unable to walk or talk because I contracted cytomegalovirus (CMV)[i] when pregnant with her, she was the happiest little soul Jim and I had ever known.  Missing her sweet, smiling face more than words can express, we tried to remind ourselves that she was on a better shore—one free from suffering. We had the following Scriptures etched on the back of her heart-shaped, pink headstone: “I will dwell in the house of the Lord forever,” and, “then will the lame leap like a deer and the mute tongue shout for joy.”

Since moving to Mystic, I was unable to visit Elizabeth’s grave as often as I would have liked. On the front of Elizabeth’s stone were the words, “Our Little Girl,” for though she was 16, she really was very little, weighing only 50 pounds at the time of her death. Visiting the grave of little two-year-old Matilda reminded me of visiting Elizabeth—at least somewhat. But Matilda wasn’t family, not mine anyway.

...

Although I would never admit it to anyone in Mystic, I thought it would be kind of exciting to experience a New England hurricane (but only the kind where no one died). A good hurricane survival story just might be my ticket to a New York Times bestseller—and the kind of notoriety I sought in order to promote a cause dear to my heart. (Amelia Earhart used her fame to promote women’s rights; my cause is a mother’s right to know how to protect her unborn child from congenital CMV.) ^[i]

---

[i] See Addendum #3 : What Should be Famous—but isn’t

---

[i] To learn more about Elizabeth’s life and how to prevent congenital cytomegalovirus (CMV) from happening to other children, see Addendum #2 and #3.

 

 

 

 



Mother's Congenital CMV Presentation

On my TV show, I presented my congenital CMV PowerPoint: 
https://www.youtube.com/watch?v=iPlIxc-01so&feature=youtu.be

You are welcome to show this to your group. I am also available to do presentations to your group.

Lisa Saunders
Author of Anything But a Dog! The perfect pet for a girl with congenital CMV
PO Box 389
Mystic, CT 06355
saundersbooks@aol.com
www.authorlisasaunders.com

Want me to speak about preventing #1 Birth Defects Virus?

I am the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV. I live in Mystic would love to come on your show to discuss the

#1 birth defects virus, cytomegalovirus (CMV), which causes more disabilities than Down syndrome. Most women don’t know how to prevent it.

 

See my short interview about my daughter, CMV, and her dog on this USA 9 News clip filmed several years ago in the DC area.  

 

Connecticut is now proposing House Bill 5147, which includes CMV education. It’s too late for my daughter Elizabeth who was born severely disabled by the virus, but I hope the public will support the bill along with a Yale professor, other medical professionals, and parents. A similar bill was passed in Utah.   

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).

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 died at 16.

My humorous and historical adventure guide, Mystic Seafarer's Trail, also includes a congenital CMV prevention message.

I can probably get Dr. Brenda K. Balch, MD,  to come on the show with me.  She is CT’s AAP EHDI (Early Hearing Detection & Intervention) Chapter Champion who has a strong interest in CMV as congenital CMV is a major cause of hearing loss.

Visit me at www.authorlisasaunders.com or contact me at saundersbooks@aol.com if you want to learn more.

Thanks!
Lisa Saunders
PO Box 389
Mystic, CT 06355
www.authorlisasaunders.com
saundersbooks@aol.com

    

Support CT's CMV education: HB 5147

Lisa's Letter to the Editor:

Connecticut is now proposing House Bill 5147, which includes CMV (cytomegalovirus) education. CMV is the #1 birth defects virus, causes more disabilities than Down syndrome, yet most women don’t know how to prevent it.

It’s too late for my daughter Elizabeth who was born with a severely damaged brain, but I hope the public will contact the Public Health Committee to support the bill along with a Yale professor, other medical professionals, and parents. A similar bill was passed in Utah.   

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).

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 died at 16.

I am the author of Anything But a Dog! The perfect pet for a girl with congenital CMV and the Congenital CMV Foundation parent representative.

Sincerely,

Lisa Saunders

PO Box 389

Mystic, CT 06355

www.authorlisasaunders.com

Sample Letter to Connecticut's Public Health Committee

The following is a sample letter you can send to the Connecticut Public Health Committee. It was drafted by 02/28/2014 Sara Doutre, who was instrumental in getting the State of Utah to pass a similar bill. I sent a similar letter to the top six members listed in the Public Health Committee. Here are their emails and names should you want to follow suit: Susan.Johnson@cga.ct.gov, Philip.Miller@cga.ct.gov, Jason.Welch@cga.ct.gov,
prasad.srinivasan@housegop.ct.gov, gerratana@senatedems.ct.gov, slossberg@senatedems.ct.gov

Dear Representatives Susan Johnson, Phillip Miller, Dr. Prasad Srinivasan, and Senators Jason Welch, Terry Gerratana and Gayle Slossberg,

SAMPLE LETTER:

Subject: HB 5147 – Cytomegalovirus (CMV) Public Education Program 

 

Dear Member of the Public Health Committee [insert names whenever possible],

 

According to the CDC, congenital cytomegalovirus (CMV) causes more long-term problems and childhood deaths than Down syndrome, fetal alcohol syndrome, and neural tube defects. In the United States, congenital CMV causes one child to become disabled every hour. (see http://www.cdc.gov/cmv/index.html)

 

While most expectant mothers know about Down syndrome and other potential birth defects, only a small percentage (22% according to the CDC) know about CMV. expectant mothers and women who plan on having children should know about CMV. This bill creates an education program to make sure they and their physicians have the appropriate information about CMV.

CMV is preventable. With proper education, mothers can avoid passing it to their unborn children. The education and early identification proposed in HB 5147 will save Connecticut money by preventing the birth defects and disabilities caused by CMV.

[Add a paragraph or two about your child or acquaintance with CMV or a link to your story (i.e. http://www.stopcmv.org/daisy_utah). ]

 

Thank you,

Name

City, State

Legislative District(s) if in Connecticut
(FIND YOUR REPRESENTTIVE AND DISTRICTS AT: local representatives)