Saturday, November 19, 2016

Lisa Saunders, CMV Awareness and Policy Advocate



Lisa Saunders is seen below holding a photograph of her daughter Elizabeth (1989-2006) with Connecticut Governor Dannel P. Malloy at the ceremonial signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford, CT, on July 28, 2015.

Lisa Saunders is the mother of a Elizabeth born severely disabled by congenital cytomegalovirus (CMV) in 1989. Just prior to her pregnancy with Elizabeth, Lisa had a miscarriage but was not tested for CMV or other prenatal infections. Until Elizabeth's birth, Lisa was unaware of CMV and although she was a licensed, in-home child care provider, a church nursery volunteer and the mother of a toddler--all activities that put her at high risk for CMV--she was not educated about the disease and how to reduce her chances of contracting it. In 2015, Lisa was instrumental in helping Connecticut become the second state in the U.S. to enact a law requiring the testing of newborns for CMV if they fail their hearing screen. A graduate of Cornell University, Lisa is a public speaker, an award-winning writer and the author of several books--some with a CMV prevention message. She is the leader of the Child Care Providers Education Committee with the National CMV Foundation.  

Click here to download and print the Resume/CV of Lisa Saunders 




Resume for downloading


Lisa Saunders provides presentations and educational materials for the whole family to stop the spread of cytomegalovirus (CMV)--a far bigger threat to newborns than Zika. She lectures on CMV for organizations such as the Centers for Disease Control and Prevention, Society of Maternal Fetal Medicine, Infection Control Nurses of Connecticut, and Siemens Healthcare Diagnostics.

Lisa interviews health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is also uploaded to YouTube.

Lisa can present on the following topics: 
  1. What Caregivers and Pregnant Women Need to Know About CMV
  2. My Story and CMV (includes research) 
  3. Connecticut and Congenital CMV
  4. How a Parent Can Raise a CMV Prevention Message (including how to get a law passed)
Her work on Connecticut's new CMV law was featured in Cornell Alumni and Connecticut magazines and by the Daughters of the American Revolution. Lisa writes extensively about congenital CMV for her Congenital CMV blog, press releases, newsletters, and articles, such as "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017). She manages the Facebook pages, CMV in Child Care and Congenital CMV News and created a one-page CMV fact sheet for policy makers. Her bibliography with links to sources can be accessed here.

 From Lisa Saunders
I am the leader of National CMV Foundation’s Childcare Providers Education & Outreach Committee and parent representative of the Congenital Cytomegalovirus (CMV) Foundation. I offer books, videos, flyers and presentations to prevent the leading viral cause of birth defects, congenital CMV, which is estimated to disable 4,000 newborns each year in the U.S. The cost of congenital CMV to the U.S. health care system is approximately $1.86 billion annually, with a cost per child of more than $300,000 each year (Modlin, et al., 2004).

CMV is often found in child care centers. Most pregnant women contract CMV from young children in their care. Child care providers and mothers of children in group care are at increased risk for CMV but few know how to reduce their chances of contracting it. When I was pregnant with my daughter Elizabeth, born severely disabled by congenital CMV in 1989, I was a licensed child care provider and the mother of a toddler. 

Recent CMV Awareness Successes (2015 – 2018)
  • In 2015, I helped Connecticut become the second state in U.S. to require CMV testing when an infant fails their hearing test.
  • Occupational Safety and Health Administration (OSHA) is now working on a publication to provide CMV prevention education for childcare workers.
  • Connecticut Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators now includes “Congenital Cytomegalovirus” under “Disease and Prevention” on its website. My ultimate goal, however, is for CMV prevention to be included in the required training for licensing.
  • The MotherToBaby.org Education Committee updated their CMV fact sheet to add a question specific to occupational exposure.

My goal is to make CMV prevention required training in child care centers in accordance with recommendations made by the American Academy of Pediatrics (AAP) in their book, Caring For Our Children, in “Standard 7.7.1.1: Staff Education and Policies on Cytomegalovirus (CMV),” which states that  caregivers/teachers should be informed about their increased probability of exposure to CMV and: “Hygiene measures (especially handwashing and avoiding contact with urine, saliva, and nasal secretions) aimed at reducing acquisition of CMV…The availability of counseling and testing for serum antibody to CMV to determine the caregiver/teacher’s immune status.” 

My work includes:
  •  Writing adult and children’s books and articles on CMV prevention.
  • Lecturing on CMV prevention, legislation, and research.
  • Interviewing health and wellness experts on my TV talk show (SEC-TV, channel 12), which is also uploaded to my YouTube channel.
  • Coordinate the planning and delivery of CMV information (press releases, newsletters, Facebook: CMV in Child Care and Congenital CMV News); educational campaigns (workshops, televised public service announcements); behavior change programs (“Keep Your Cups to Yourself”), CMV risk assessments (health fairs); hand-washing; and more. 

Qualifications for CMV Work:
  • Education: Cornell University, Ithaca, NY: B.S. - Business Management and Marketing (1982).
  • Parent representative of the Congenital Cytomegalovirus Foundation.
  • Global Congenital CMV Network, Congenital CMV Partnership Team.
  • Former licensed child care provider (1986-1989). 
  • Mother of child who suffered from congenital CMV for 16 years (1989-2006).
  • International author of books providing a CMV prevention message.
  • Former campus communications writer for the State University of New York at Rockland.
  • Commendations: Infection Control Nurses of Connecticut: Honored for “Unwavering dedication in her crusade to stop CMV (2013) and Cornell University President, David J. Skorton, MD: Letter of appreciation for CMV work (2013)



 
CMV PRESENTATIONS INCLUDE

American Industrial Hygiene Association (AIHA), Connecticut River Valley (Oct. 3, 2019)

Presentation: “What Child Care Providers, Teachers and Pregnant Women Need to Know About CMV”. AIHA works to provide information and resources to Industrial Hygienists and Occupational Health professionals. Contact: Nellie Brown, MS, CIH, Director of Workplace Health & Safety Programs, Lead Programs Manager, Certified Industrial Hygienist, The Worker Institute,  Buffalo, NY 14203. ILR School, Cornell University, t. 716 852 1444 x111, njb7@cornell.edu | www.ilr.cornell.edu

 Charles R. Drew University of Medicine and Science, Los Angeles, California (March 6, 2019)
Good News Radio Magazine: "Prenatal Infections". Co-presented with James A. McGregor, MDCM (obstetrician and gynecologist) and Marti Perhach, CEO, Group B Strep International. Contact: Andrea Jones, Projects Specialist, Healthy African American Families, AndreaJones@haafii.org

Prenatal Infection Prevention Symposium, online (Feb. 26, 2019)
Video presentation: “Help Child Care Providers Fight Cytomegalovirus (CMV): Protect Newborns From #1 Birth Defects Virus.”  Contact: Marti Perhach, Group B Strep International (GBSI) Cofounder and CEO: marti.perhach@gbs-intl.org

University of Massachusetts Medical School, Shewsbury, Massachusetts (Jan. 16)
Meeting presentation: “Connecticut Experience with CMV Testing Legislation: Barriers and Solutions". Contact leader of Massachusetts Congenital CMV Working Group: Laura Gibson, M.D., Associate Professor, Infectious Diseases and Immunology, Chief, Division of Medicine-Pediatrics, Departments of Medicine and Pediatrics, University of Massachusetts Medical School, laura.gibson@umassmed.edu


CMV Public Health and Policy Conference, Burlington, Vermont (Sept. 24, 2018)
Poster: "Increasing Child Care Provider Awareness of Congenital Cytomegalovirus”, co-presented with Brenda Kinsella Balch, MD, Connecticut Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program. Contact: President, National CMV Foundation: kristen.spytek@nationalcmv.org

Society of Maternal Fetal Medicine, Las Vegas, NV (January 26, 2017)
"Congenital CMV and Research" – Caesars Palace. www.smfm.org/meetings/2-37th-annual-pregnancy-meeting. Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305-4348, (917) 673-7790, sb1080@cumc.columbia.edu. See study: https://clinicaltrials.gov/ct2/show/NCT01376778

Maternal and Child Health (MCH) Coalition, Hamden, CT (December 13, 2016) “What Caregivers and Pregnant Women Need to Know About CMV”.
Women's Consortium: www.womensconsortium.org. Marijane Carey, mjcarey95@aol.com

Congenital CMV Public Health & Policy Conference, Austin, TX (September 27, 2016)
“As One Door Closed, Another Door Opened: CT Congenital CMV Initiative”, co-presented with  Brenda Kinsella Balch, MD, CT pediatrician and Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program, bkbalch@sbcglobal.net. http://cmvconference.org/.  

Medical Assistance Program Oversight Council's Women’s Health Committee, Hartford, CT (July 13, 2015) “Connecticut and Congenital CMV”. www.cga.ct.gov/med/default.asp. Richard Eighme, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 20, 2015). Public Testimony for H.B. 5525: “AN ACT CONCERNING CYTOMEGALOVIRUS”

CMV Public Health & Policy Conference, Salt Lake City, UT (September 26, 2014)
“How a Parent Can Raise a CMV Prevention Message”. CMVconference.org/archive/cmv2014/index.html. Contact Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, Congenital CMV Disease Research, Clinic & Registry, 832-824-4330, cmv@bcm.edu

Infection Control Nurses of Connecticut Annual Spring Seminar, Plantsville, CT (April 2013)
“CMV: Threat to immunocompromised persons” - Aqua Turf Club. http://infectioncontrolct.org/.
Kris Magnussen, Communicable Disease Prevention Supervisor, KMagnussen@llhd.org

CMV 2012 Conference, San Francisco, CA (October 29-November 2, 2012)
“Raising CMV Awareness by Writing” - Conference Mission Bay Conference Centre. congenitalcmv.org. Lenore Pereira, Ph.D., Founder, Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco, lenore.pereira@ucsf.edu

Siemens Healthcare Diagnostics, Tarrytown, NY (2010)
“Living With Congenital CMV” (webinar). https://usa.healthcare.siemens.com. Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com; Louise Loughran, louise.loughran@siemens.com

Maternal-Infant Services Network, Orange, Sullivan and Ulster Counties, NY (March 20, 2009)
“Pregnant Women Need to Know about CMV” - Perinatal Update 2009. www.misn-ny.org. Stephanie Sosnowski, BS, ICCE, CLC, Director of Community Health and Wellness, ssosnowski@misn-ny.org

Centers for Disease Control and Prevention (CDC), Atlanta, GA (November 5-7, 2008)
“Congenital CMV: My Daughter’s Life and Death” - First International Congenital CMV Conference held in the U.S. See: http://congenitalcmv.blogspot.com/2008/11/cdc-congenital-cmv-cytomegalovirus-and.html. Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the CDC.



Additional Presentations:

Visiting Nurse Association of Southeastern Connecticut, Waterford, CT (Oct. 4, 2017). “CMV: Protect Your Pregnancy.” www.vnasc.org. Contact: Deborah Buxton-Morris, M.S., R.N. Program Supervisor, dbuxton-morris@vnasc.org

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 28, 2014)
Public Testimony for H.B. 5147: “AN ACT CONCERNING NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.”

The Woman’s City Club of Norwich, Norwich, CT (2015)
“How a Mother Raised Awareness of CMV and Got Connecticut to Pass a Bill.” Otis Library.
Eileen Nagel, eileen.nagel@snet.net

Westerly Registered Nurse’s Club, Westerly, RI (April 22, 2014)
“Supporting a Connecticut CMV Bill,” Mermaid Café. Ida Manzella, imanzella@comcast.net

State University of New York at Rockland, Suffern, NY (December 9, 2008)
Science Lecture Series, #2: “Anything But a Dog”: Story of my daughter born with congenital CMV. Series organized by a nursing professor.  


BOOKS, VIDEOS, ARTICLES AND OTHER RESOURCE MATERIALS


 


Books
  1. Help Childcare Providers Fight CMV. A workbook for child care directors and policy makers (2018).
  2. Anything But a Dog! The perfect pet for a girl with CMV. A memoir (Unlimited Publishing, 2008, Japan: Thousand Books, 2017)
  3. Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
  4. Once Upon a Placemat: A Table Setting Tale. An educational coloring book for families and child care centers. "Grandma" uses Miss Cup to insist on germ prevention. She also discusses Mr. Knife's fear of the dish will running away with the spoon to teach table-setting. FREE Teaching Toolkit includes a "Color-me-in" placemat with tableware characters with Miss Cup's germ prevention tips.

Videos

Articles

Flyers

Music (collaborated with singer/songwriter Debra Lynn Alt)



PROFESSIONAL EXPERIENCE



INDEPENDENT WRITING/MARKETING CONSULTANT, Nov. 2010 – Present

  • Content Coordinator, Groton-Mystic Neighbors magazine (Best Version Media publication), since March 2018.

  • New England/New York media and networking consultant.  Write press releases, biographies, and marketing materials for clients that include National Field Service Corporation and Connie Howard Music. 

MYSTIC SEAPORT, Mystic, CT, 2010 – Present (part-time)
Historical Interpreter: Orally present maritime history and artifacts to the general public.

STATE UNIVERSITY OF NEW YORK AT ROCKLAND, Suffern, NY, 2006 – 2010
Campus Communications Assistant
  • Promoted events and programs to the media, authoring press releases, which resulted in newspaper coverage of the college and faculty. Wrote the alumni newsletter, SCENE, with quarterly circulation of 35,000. Used Twitter, Facebook, and RCC Speakers Bureau as additional promotional tools.
Key Accomplishments
  • Awarded by the National Council for Marketing & Public Relations, District I: “Gold Medallion” for Academic Convocation Booklet (2010); Silver for Departmental Brochures (2010); and Bronze for ad print series, which featured noteworthy alumni (2009). 
  • Received national coverage on Fox and Friends and in Associated Press through press releases relating the circumstances of individual students or faculty to current events.

NATIONAL FIELD SERVICE CORPORATION, Suffern, NY, 1998 – 2008 (presently consulting)
Recruiter / Marketing Specialist for consulting company
Interviewed approximately 80 candidates monthly and communicated with clients on employment needs in the utility, communications, and right-of-way industries. Represented company at job fairs and coordinated marketing events, including annual 100-guest Christmas party and sleepover event at West Point Academy. Placed many applicants with AT&T. Maintained database of applicants in People Trak.

LICENSED HOME DAY CARE PROVIDER, Rockville, MD, 1987-1993
Provided in-home care and educational programs for up to six children.






Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of Governor Dannel P. Malloy on 7/28/15. L to R: Jane Baird, Government Relations, Connecticut Children's Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Connecticut Department of Public Health ; John Hampton For State Representative; Dr. Brenda K. Balch, American Academy of Pediatrics EHDI (Early Hearing Detection and Intervention)Chapter Champion; Office of Lt. Governor Nancy Wyman; Lisa Saunders, Author/TV Host; parent representative, Congenital Cytomegalovirus Foundation, holding photo of daughter Elizabeth of Anything But a Dog - Girl with congenital CMV - cytomegalovirus ; State Representative Kevin Ryan; Governor Dannel P. Malloy; Cathy Osten for the 19th District State Senator; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith & Lutz.


ARTICLES and TV INTERVIEWS THAT INCLUDE MY COMMENTS OR CMV WORK

Ongoing CMV Awareness Work


  • Promoting and marketing CMV prevention programs to target populations such as child care workers and women of childbearing age by utilizing existing resources such as those created by the Centers for Disease Control and Prevention (CDC), National CMV Foundation, Congenital CMV Disease Research, Clinic & Registry, Congenital Cytomegalovirus Foundation, and National CMV Registry for Pregnant Women (part of the CMV Research Foundation Inc.), in addition to other birth defects prevention organizations.
  • Sharing health promotion and disease prevention campaigns through national observances: June: National Congenital CMV Awareness Month, October: 15 - 21 International Infection Prevention Week; October 15: Global Handwashing Day; January: National Birth Defects Prevention Month; February: International Prenatal Infection Prevention Month; and April: National Public Health Week.
  • Consulting regularly with the country's leading CMV medical experts. Contacting relevant organizations requesting CMV education be included in training materials, literature and websites. Consulting with legislators to create CMV prevention education laws--particularly in regard to child care centers. Maintaining an extensive bibliography with live links to resource articles and presentations. 

LETTER FROM LISA SAUNDERS
“Wash Away CMV: Protect Your Pregnancy”


I am Lisa Saunders, the mother of Elizabeth, born severely disabled by congenital cytomegalovirus (CMV). My mission is to prevent Elizabeth’s suffering from happening to other children. According to the New York Times in 2016, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed.

Most pregnant women know to avoid dirty kitty litter and mosquito bites to protect their unborn babies from disabilities caused by infections.  Very few, however, know how to prevent the leading viral cause of birth defects, congenital CMV. Congenital (present at birth) CMV is a more common cause of disabilities than fetal alcohol syndrome and spina bifida. Of the four million infants born each year in the U.S., approximately 1% are infected prenatally with CMV according to the American Academy of Pediatrics (AAP).  Ten percent of those infants, about 4,000 babies each year, are born with one or multiple abnormalities including hearing and vision loss; intellectual challenges; cerebral palsy; and seizures.

CMV is often found in the bodily fluids of otherwise healthy toddlers. Toddlers can spread the disease to other toddlers by mouthing each other’s toys, and to their adult caregivers who may be unaware of how to properly handle bodily fluids such as saliva and nasal secretions. Unfortunately, most women of childbearing age don’t know about CMV, and don’t realize they should avoid kissing toddlers around the mouth, as well as sharing cups and utensils with them. I was one of those women.

While I was pregnant with Elizabeth, I operated a licensed home daycare center, volunteered in our church nursery, and was the mother of a toddler—all things that put me at higher risk for contracting CMV.

My pregnancy with Elizabeth, due to be born on Christmas Eve of 1989, was a happy experience—until the moment she arrived on December 18th. Upon looking at her, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.” After a CAT scan, the neonatologist said, "Your daughter has microcephaly—her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." Further tests revealed Elizabeth's birth defects were caused by congenital CMV.


I was then given information from the Centers for Disease Control and Prevention (CDC) stating that, "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." This information came too late to spare my daughter the years of suffering that lay ahead. Nowhere in my daycare licensing training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits. 

 I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities. But Elizabeth's case was not a mild one. When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. Although Elizabeth was profoundly mentally impaired, legally blind, had cerebral palsy, epilepsy and a progressive hearing loss, we were eventually able to move forward as a happy, "normal" family. 

Years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and seizures. Weighing only 50 pounds, she looked funny to strangers because of her small head and adult teeth, but she was lovely to us with her long brown hair, large blue eyes and a soul-capturing smile. She even won the "Best Smiling Award" at school. Although still in diapers and unable to speak or hold up her head, Elizabeth loved going for long car rides. She especially enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

In 2006, less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”


Shortly after Elizabeth died, I had a nightmare: visiting a support group of new parents of children with congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more to warn us about CMV?”

Although I had written about Elizabeth’s life with her tomboy sister and a series of dysfunctional pets in my book, “Anything But a Dog: the perfect pet for a girl with congenital CMV,” which was also published in Japan, CMV remains largely unknown.

In 2012, because of my online presence as a writer and speaker about CMV, I received an email from a grandmother distraught about her grandson born with congenital CMV. The baby’s mother was a high school student interning in a Connecticut childcare center. The young mother, just like me many years earlier, was unaware she was putting her pregnancy at greater risk by working with toddlers. Eight - 20% of caregivers/teachers contract CMV
(AAP et al., 2011). About 44 to 100% of two-year-olds in group daycare are excreting CMV (Pass et al., 1986).

When I visited the new mother and baby in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why don’t you launch an awareness campaign?"

I explained to the nurse that CMV parents, scientists and doctors have been trying for years to raise awareness but we can’t sustain meaningful, long-term change without government help. “Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns on CMV” (Clinical Advisor, 2014).

I finally made some headway in 2015. By modeling efforts in Utah, I helped Connecticut become the second state to pass a law requiring babies who fail their hearing exam to be tested for CMV. But CMV prevention education is also needed—especially since studies have shown that the effectiveness of hygienic precautions is greater than 75% (Adler, 2015).

According to a recent study, only 18.5% of licensed “in-home” daycare providers have heard of CMV and “Providers do not know how to appropriately sanitize surfaces to reduce spread of disease” (Thackeray et al., 2016).  For example, many providers use diaper wipes to clean a surface, but diaper wipes do not sanitize it.  Given that “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases.” 

My goal is to make CMV prevention required training in child care centers across the country. The American Academy of Pediatrics states in their book, “Caring For Our Children,” that “Child care staff members should receive counseling in regard to the risks of acquiring CMV from their primary health care provider. However, it is also important for the child care center director to inform infant caregivers/teachers of the increased risk of exposure to CMV during pregnancy.”

“Increasing risk perception is important because providers may not be concerned about taking measures to reduce the probability of infection if they feel that they are at low risk” (Thackeray et al., 2016).

According to the Occupational Safety and Health Administration (OSHA), it is a worker's right to know occupational hazards. Given there are more than half a million child care workers in the U.S. (Childcare Aware of America, 2016), that mothers of children in daycare are also at increased risk for CMV  (Pass et al., 1986), and that congenital CMV costs the U.S. health care system approximately 1.86 billion annually (Modlin, et al., 2004), it’s time for a national CMV prevention campaign.


To help prevent CMV (and other diseases spread by saliva), I provide educational materials for the whole family with my “color-me-in” fairytale, “Once Upon a Placemat: A Table Setting Tale,” which includes a free teaching toolkit. The fairytale, co-authored by my daughter Jackie Tortora, uses "Grandma" to speak for “Miss Cup” to enforce germ prevention, and features “Mr. Knife's” fear of the dish running away with the spoon to teach table-setting. The teaching toolkit includes  placemats, with the tableware characters correctly arranged, for downloading, coloring and laminating. The other side of the placemat features germ prevention and hand-washing tips. A YouTube video introduces children to the placemat characters and how to download the free placemats.

I present CMV prevention education through workshops,  public service announcements, health fairs, and my articles such as  "The Danger of Spreading CMV: How We Can Protect Our Children" (ChildCare Aware of America, 2017). I interview health experts, including Yale University doctors, on “The Lisa Saunders Show” (SEC-TV, channel 12 and YouTube) and regularly write about CMV in newsletters to healthcare professionals, for my “Congenital CMV”  blog, and for germ-fighting organizations such as “Henry the Hand.” My Facebook pages,  "CMV in Child Care" and "Congenital CMV News," encourage behavioral changes through hand-washing and no cup sharing campaigns.

Upon request, I lecture at conferences nationwide such as those held by the
CDC, Society of Maternal Fetal Medicine, Maternal and Child Health Coalition, and Infection Control Nurses of Connecticut.

As a result of me contacting organizations, OSHA is now creating a CMV publication for childcare workers, the MotherToBaby.org updated their CMV fact sheet to add occupational exposure, and the Connecticut Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators now includes Congenital Cytomegalovirus (CMV)  under “Disease and Prevention” on its website.

If you can help raise CMV awareness, according to studies on prevention, our nation should have a higher number of healthy newborns.

Thank you in advance for your help! 


###
My CMV presentations include: 

Visiting Nurse Association of Southeastern Connecticut, Waterford, CT (Oct. 4, 2017)
“CMV: Protect Your Pregnancy.” Contact: Deborah Buxton-Morris, M.S., R.N.
Program Supervisor, Nurse-Family Partnership of Eastern Connecticut, dbuxton-morris@vnasc.org.

Society of Maternal Fetal Medicine, Las Vegas, NV (January 26, 2017)
"Congenital CMV and Research" – Caesars Palace. www.smfm.org/meetings/2-37th-annual-pregnancy-meeting. Contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305-4348, (917) 673-7790, sb1080@cumc.columbia.edu.

Maternal and Child Health (MCH) Coalition, Hamden, CT (December 13, 2016)
“What Caregivers and Pregnant Women Need to Know About CMV”.
Women's Consortium: www.womensconsortium.org. Contact Marijane Carey, mjcarey95@aol.com

Congenital CMV Public Health & Policy Conference, Austin, TX (September 27, 2016)
“As One Door Closed, Another Door Opened: CT Congenital CMV Initiative”, co-presented with  Brenda Kinsella Balch, MD, CT pediatrician and Chapter Champion for the American Academy of Pediatrics Early Hearing Detection and Intervention Program, bkbalch@sbcglobal.net. http://cmvconference.org/.  

Medical Assistance Program Oversight Council's Women’s Health Committee, Hartford, CT (July 13, 2015)
“Connecticut and Congenital CMV”. www.cga.ct.gov/med/default.asp. Richard Eighme, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov, or Rep. Susan Johnson, Johnson@cga.ct.gov

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 20, 2015)
Public Testimony for H.B. 5525: “AN ACT CONCERNING CYTOMEGALOVIRUS”

CMV Public Health and Policy Conference, Salt Lake City, UT (September 26, 2014)
“How a Parent Can Raise a CMV Prevention Message”. www.cmvconference.org/archive/cmv2014/index.html. Contact: Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, Congenital CMV Disease Research, Clinic & Registry, 832-824-4330, gjdemmle@texaschildrens.org

Westerly Registered Nurse’s Club, Westerly, RI (April 22, 2014)
“Supporting a Connecticut CMV Bill,” Mermaid Café. Contact: Ida Manzella, imanzella@comcast.net

Connecticut Public Health Committee, Capitol Legislative Office Building, Hartford, CT (February 28, 2014)
Public Testimony for H.B. 5147: “AN ACT CONCERNING NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.” 

Infection Control Nurses of Connecticut Annual Spring Seminar, Plantsville, CT (April 2013)
“CMV: Threat to immunocompromised persons” - Aqua Turf Club. http://infectioncontrolct.org/.
Contact Kris Magnussen, Communicable Disease Prevention Supervisor, KMagnussen@llhd.org

CMV 2012 Conference, San Francisco, CA (October 29-November 2, 2012)
“Raising CMV Awareness by Writing” - Conference Mission Bay Conference Centre. www.congenitalcmv.org. Contact 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

Siemens Healthcare Diagnostics, Tarrytown, NY (2010)
“Living With Congenital CMV” (webinar). https://usa.healthcare.siemens.com. Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com; Louise Loughran, louise.loughran@siemens.com

Maternal-Infant Services Network, Orange, Sullivan and Ulster Counties, NY (March 20, 2009)
“Pregnant Women Need to Know about CMV” - Perinatal Update 2009. www.misn-ny.org. Contact:
Stephanie Sosnowski, BS, ICCE, CLC, Director of Community Health and Wellness, ssosnowski@misn-ny.org

State University of New York at Rockland, Suffern, NY (December 2, 2008)
“Tragic Kiss: Stop the Spread of CMV” – Organized by a nursing professor. 

Centers for Disease Control and Prevention (CDC), Atlanta, GA (November 5-7, 2008)
“Congenital CMV: My Daughter’s Life and Death” - First International Congenital CMV Conference held in the U.S. See: http://congenitalcmv.blogspot.com/2008/11/cdc-congenital-cmv-cytomegalovirus-and.html. Contact Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the CDC.

Johns Hopkins University, Baltimore, MD (Fall 1995)
“Raising my handicapped daughter” - Guest speaker to a graduate class of special education teachers, therapists, and social workers.  Contact Mary Goodin, M. Ed., OTR, Ssagoodin@cs.com

I also present CMV awareness to local women’s groups such as:
The Woman’s City Club of Norwich, Norwich, CT (2015)
“How a Mother Raised Awareness of CMV and Got Connecticut to Pass a Bill.” Otis Library. Contact Eileen Nagel, eileen.nagel@snet.net



ADDITIONAL IMAGES, ETC: Since Elizabeth's birth, and later death, I have written four 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 (a fairy tale inspired by my daughter's death and belief we will all be reunited one day)
Once Upon a Placemat--A table setting tale: Coloring book and CMV prevention tips from Miss Cup. (Click here for video of me introducing book and here for placemats for downloading and coloring.)
Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)

Contact Lisa Saunders
PO Box 389,  Mystic, CT 06355, LisaSaunders42@gmail.com
http://www.authorlisasaunders.com/
https://www.facebook.com/congenitalcmvnews/

 http://congenitalcmv.blogspot.com/
Types of Organizations Lisa collaborates with: click here



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