Monday, December 12, 2016

Your State's Day Care Licensing Division--Stopping birth defects from congenital CMV?

Can you help me? I'm looking for each state's Day Care Licensing Division information. 

When I was pregnant, I was a licensed day care provider and unaware of CMV, my increased risk for contracting it, and how to prevent it. My daughter Elizabeth was born severely disabled by congenital CMV. 



I am gathering every state's day care licensing division information to ensure they have the cytomegalovirus (CMV) prevention education materials they need to protect the health of babies born to their childcare workers and to the families who have a child in their care.


These are the kinds of things I'm hoping day care centers are providing/will provide: 

  1. CMV prevention education added to the licensing training (see: https://www.daycare.com/fastfacts/illness/cytomegalovirus.html)
  2. CMV prevention  education added to a childcare center’s handbook and website
  3. CMV prevention discussed at center’s parent orientation
  4. CMV prevention brochures (see Utah's brochure for childcare providers). 
  5. Signs about CMV prevention hanging in day care centers so parents can also see them when they pick up their children (see one from National CMV Foundation below). Currently, in Connecticut, day care centers are inspected for:
Items Posted: Conspicuous/Accessible
8. License
9. Current Fire Marshal Certificate Date:____________
10. DPH Complaint Procedure
__11. Food Service Certificate Date:____________
12. Menus
13. Emergency Plans
14. No Smoking Signs
15. Radon Test 


Would you be able to send me the following information with links? This is what I would like: 
  1. Your State
  2. State CMV Bill? Status?
  3. Day Care Licensing Division 
  4. Day Care licensing contact person with email and/or phone.
  5. Department of Health's CMV webpage (if any)
  6. Occupational Safety and Health Administration (OSHA):  Your state's office
  7. Your name, title (parent/health professional, and email address (if you are willing to have it posted on my blog)
For example, the following is my state's information (I will add these below in alphabetical order): 

  1. Connecticut (CT)http://portal.ct.gov/
  2. CT CMV Bill Status - In 2015, H.B. 5525 was passed to test newborns who fail their hearing screen for CMV: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+
  3. CT Day Care Licensing Division: Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators: http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170
  4. CT Day Care Licensing Contact Person: Debra L. Johnson, Director, Division of Licensing, Connecticut Office of Early Childhood, debra.johnson@ct.gov,  860-509-8045Valerie.L.Bryan@ct.gov
  5. CT Department of Health's CMV Webpage: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824
  6. CT OSHA Officehttps://www.osha.gov/oshdir/ct.html
  7. My name: Lisa Saunders, CMV mom, former licensed day care provider, and parent rep, Congenital Cytomegalovirus Foundation, LisaSaunders42@gmail.com

Please send your state's licensing information to me at LisaSaunders42@gmail.com.I plan to post it on my blog as seen below, so if you don't want your name and email address listed, that's fine. 

Thank you! 
Lisa Saunders
CMV Awareness and Policy AdvocateParent Rep., Congenital Cytomegalovirus Foundation
 LisaSaunders42@gmail.com | www.authorlisasaunders.com | http://congenitalcmv.org/ | PO Box 389, Mystic, CT 06355 | 
   

SAMPLE WALL FLYER



CONNECTICUT
  1. Connecticut (CT)http://portal.ct.gov/
  2. CT CMV Bill Status - In 2015, H.B. 5525 was passed to test newborns who fail their hearing screen for CMV: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&which_year=2015&bill_num=5525+
  3. CT Day Care Licensing Division: Office of Early Childhood’s Division of Licensing for Child Care Providers/Operators: http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170
  4. CT Day Care Licensing Contact Person: 860-509-8045Valerie.L.Bryan@ct.gov
  5. CT Department of Health's CMV Webpage: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824
  6. CT OSHA Officehttps://www.osha.gov/oshdir/ct.html
  7. My name: Lisa Saunders,  former licensed day care provider, and parent rep, Congenital Cytomegalovirus Foundation, LisaSaunders42@gmail.com
###

OKLAHOMA
  1.  Oklahoma
  2. State CMV Bill? No Status? Initial stages of awareness campaign with state legislators/senate, health committee
  3. Day Care Licensing Division Department of Human Services
  4. Day Care licensing contact person with email and/or phone.childcare.occs@okdhs.orgPhone 800-347-2276, Mailing Address: PO BOX 25352, Oklahoma City, OK 73125-0352
  5. Department of Health's CMV webpage (if any) None
  6. OSHA:  Your state's office
Oklahoma City Area Office
55 North Robinson - Suite 315
Oklahoma City, Oklahoma 73102-9237
(405) 278-9560
(405) 278-9572 FAX
  1. Your name, title, and contact information
Cara Gluck
CMV Parent Advocate
Contact:   580-678-9509

                  carac@health.ok.gov

###

TENNESSEE


1. State: Tennessee
2. State CMV Bill Status: In February 2016, HB2397/SB2097 (CMV Awareness Bill) passed unanimously: http://share.tn.gov/sos/acts/109/pub/pc0625.pdf
Became law July 1, 2016. 
3. TN Daycare Licensing Division:
http://www.tn.gov/humanservices/topic/child-care-services
http://www.tn.gov/humanservices/article/child-care-certificate-program-office-locator
4. TN Daycare licensing person: See above office locator link. Waiting for email response with a name of person in charge of entire state. 
5. TN Dept. of Health CMV site: none
6. TN OSHA:
7. Rebekah McGill, MA, CCC-SLP, speech-language pathologist and CMV awareness advocate, rebekahmcgill.rm@gmail.com

Wednesday, December 7, 2016

Lisa Saunders, author and TV host: Death of a child--The Woodcutter's Tale

Lisa Saunders, author and TV host: Death of a child--The Woodcutter's Tale: My father felt inspired to write this short fairytale after my daughter died. Her entire life had been a struggle with congenital cytomega...

After Losing a Child: My Christmas wish for others



Dear Santa,

     When my hound Doolittle and I stopped in front of the "Letters to Santa" mailbox in downtown Mystic, Connecticut, Doolittle’s look of optimism gave me the idea to write to you. Perhaps you can grant me my deepest, sincerest wish—that no more babies will suffer from congenital cytomegalovirus (CMV).

My daughter Elizabeth, born on December 18, 1989, would have been 27 this Christmas 2016 if she hadn't been born with congenital CMV. 
Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”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." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. 
Why hadn’t I heard of CMV before and the precautions to take? While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. 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 later in life. 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. We were eventually able to move forward as a happy, "normal" family. 

Sixteen 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 most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to 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."

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 had 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.”
As we prepare to celebrate our 11th Christmas without Elizabeth, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)




Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say, if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. 

I knew I would need reminders of where Elizabeth was and what she is enjoying, so engravers etched on the back of her headstone that she is dwelling in the house of the Lord where: "...the lame leap like a deer and the mute tongue shout for joy" (Isaiah 35:6). Many times when I was lost in despair those first few years, I visited her stone, hugged it, and left somewhat cheered when I pondered her new life. 


When my time comes, I will see Elizabeth again. 




My father wrote a fairy tale that I found very helpful after Elizabeth died, The Woodcutter’s Tale. To read it on my blog, click here,  or download the free pdf with its color images and comments by a therapist on grief by clicking here.*  


  The Only Thing I Can Do for Elizabeth Now
Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention. I'm thrilled to say that Connecticut legislators finally passed a bill requiring congenital CMV testing for infants who fail their hearing screen. The prevention education part didn't pass, however, because of funds, so it is still on my wish list for Christmases yet to come. 

So, I must continue in my quest, begun in my misadventure travel memoir, Mystic Seafarer's Trail, to become thin and famous so people will listen to me! 
After presenting the story of Elizabeth's life at the first international Congenital CMV conference held in the U.S, at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"
Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my writing, speaking engagements, and contacting agencies I hope will help. Thankfully, there is a large army of CMV parents and medical professionals doing the same thing (see CMV organizations  and legislation below). 
As a storyteller, I found the following ways to share a CMV prevention message: 
  1. Music video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)
  2. Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Japan, 2017)
  3. Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention from “Miss Cup” (2016)
  4. Paper placemats for downloading and coloring teach table-setting and CMV prevention
  5. Video geared to children introduces the placemat characters 
  6. Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child (2013)
  7. Travel memoir: Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)


Santa, below my signature are ways you and your helpers can learn more about congenital CMV and how to stop it. 

Merry Christmas and “God bless us, everyone!”

Sincerely,

Lisa Saunders
Congenital CMV Blog 
LisaSaunders42@gmail.com
PO Box, 389, Mystic, CT 06355

U.S. LEGISLATION
—In 2011, United States Senate passed legislation recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” and designated the month of June as National Congenital CMV Awareness Month.
In 2015, Connecticut passed testing of newborns who fail their hearing screen, but not prevention education because of funds.
“In five states (Hawaii, Illinois, Tennessee, Texas, and Utah), laws regarding CMV awareness have been passed that require healthcare providers to discuss CMV with pregnant women, and in eight additional states, CMV legislation has been proposed or is in discussion.” (Cytomegalovirus: The Virus All Pregnant Women Should Know About Now by Gail Demmler-Harrison, MD (Dec. 2. 2016)
U.S. ORGANIZATIONS THAT WORK TO STOP CMV

Congenital CMV Disease Research, Clinic & Registry
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. The CMV Registry supports CMV research, disseminates information and provides parent support. Visit: https://www.bcm.edu/departments/pediatrics/sections-divisions-centers/cmvregistry. Dr. Demmler-Harrison’s Blog: http://www.texaschildrensblog.org/author/gdemmler/
Contact: 832-824-4330, gjdemmle@texaschildrens.org

National CMV Foundation 
“At the National CMV Foundation, we work to inform and educate others on specific prevention measures to protect against the risk of CMV infection.” They have a very good congenital cytomegalovirus Q. and A. at: https://www.nationalcmv.org/resources/faqs.aspx.  They have simple flyers for downloading at: https://www.nationalcmv.org/resources/educational-downloads.aspx. Sample flyer: 
 
Congenital Cytomegalovirus Foundation 
Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco.  The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. Excellent research papers available at: http://www.congenitalcmv.org/
Contact: lenore.pereira@ucsf.edu

National CMV Registry for Pregnant Women 
Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. He organized the National CMV Registry for Pregnant Women. Visit: http://www.cmvregistry.org/, contact: sadler@vcu.edu

PREVENTION RESOURCES FOR OTHER DISEASES
CDC: Read “Protect Your Unborn Baby or Newborn from Infections” to learn about preventing CMV infection as well as Group B Strep (GBS) disease, listeriosis, and Zika at: www.cdc.gov/features/prenatalinfections/

CONGENITAL CMV ORGANIZATIONS IN OTHER COUNTRIES INCLUDE:
Australia—Congenital CMV Association of Australia: http://cmvcanada.com
Canada—Canadian CMV Foundation: http://cmvcanada.com
United Kingdom—CMV Action: http://cmvaction.org.uk
Japan— TORCH Association Japan: http://toxo-cmv.org/; info@toxo-cmv.org; https://www.facebook.com/toxocmv/; (TORCH: Toxoplasmosis, Other infections, Rubella, Cytomegalovirus, and Herpes simplex virus, which can cause serious conditions in the fetus or newborn following maternal infection)



*(If you want to give Surviving Loss: The Woodcutter’s Tale as gift, it is available in softcover on Amazon at: Surviving Loss: The Woodcutter’s Tale. The story is an excerpt from my memoir, Anything But a Dog! The perfect pet for a girl with CMV the publisher, Unlimited Publishing LLC, gave me permission to publish this excerpt from it.)




Saturday, November 19, 2016

Lisa Saunders, CMV Awareness and Policy Advocate


Lisa Saunders
CMV Awareness and Policy Advocate 

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 the unborn than Zika. She believes it is a woman's right to know how to reduce her chances of contracting CMV to protect her pregnancy.

A former licensed daycare provider and parent representative of Congenital Cytomegalovirus Foundation, Lisa helped Connecticut become one of the few states to pass a law aimed at battling CMV. Her work on the new CMV law was featured in Cornell Alumni and Connecticut magazines and broadcast by the Daughters of the American Revolution.

Lisa has lectured on CMV for several organizations such as the Centers for Disease Control and Prevention, Society of Maternal Fetal Medicine, Maternal and Child Health Coalition, Infection Control Nurses of Connecticut, and Siemens Healthcare Diagnostics. Lisa can present on: 
  • What Caregivers and Pregnant Women Need to Know About CMV
  • Congenital CMV and Research 
  • Connecticut and Congenital CMV
  • How a Parent Can Raise a CMV Prevention Message (including how to get a law passed)
Lisa interviews health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is also uploaded to YouTube. She writes extensively about CMV for her Congenital CMV blog, press releases, newsletters, and articles. She manages the Facebook pages, CMV in Child Care and Congenital CMV News). Her bibliography with links to sources can be accessed by clicking here.

LISA'S BOOKS INCLUDE CMV
1.Memoir: Anything But a Dog! The perfect pet for a girl with CMV
2.Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward.
3.Educational coloring book: Once Upon a Placemat: A Table Setting Tale

CMV PRESENTATIONS AND CONTACTS INCLUDE: 


CMV PRESENTATIONS

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.
See study: https://clinicaltrials.gov/ct2/show/NCT01376778

Maternal and Child Health (MCH) Coalition, Hamden, CT (December 13, 2016)
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/.  

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 & 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

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 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

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

COMMENDATIONS

ARTICLES & TV INTERVIEWS THAT INCLUDE MY COMMENTS OR CMV WORK



MY BOOKS, VIDEOS, AND OTHER RESOURCE MATERIALS
  1. Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention tips from “Miss Cup” (2016). Fun, Free Teaching Toolkit for Students and Their Families:
"Grandma" uses Miss Cup to enforce germ prevention and uses Mr. Knife's fear that the dish will run away with the spoon to teach table-setting in the educational coloring book, "Once Upon a Placemat: A Table Setting Tale." FREE Teaching Toolkit includes:
  1. Music/image video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)
  2. Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Thousand Books, Japan, 2017)
  3. Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
  4. Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)

MY ARTICLES, TESTIMONIES, PRESENTATIONS

PROFESSIONAL EXPERIENCE

INDEPENDENT WRITING/MARKETING CONSULTANT, Nov. 2010 – Present
New England/New York media and networking consultant.  Write press releases, biographies, and marketing materials for clients that include:
  • National Field Service Corporation
  • Act II Publications
  • 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 WymanLisa 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.
###

NOTE FROM LISA SAUNDERS


Title of Work: “CMV: Protect Your Pregnancy”

Most pregnant women know to avoid changing the kitty litter to avoid toxoplasmosis, a viral cause of birth defects. They have also heard how to protect their pregnancies from Zika, the mosquito virus that can cause microcephaly. Very few women, however, know how to prevent a far greater menace—cytomegalovirus (CMV), the leading viral cause of birth defects, more common a cause of disabilities than Down syndrome and fetal alcohol syndrome. 

What is CMV? 
According to the CDC, "Cytomegalovirus (pronounced sy-toe-MEG-a-low-vy-rus), or CMV, is a common virus that infects people of all ages. Over half of adults by age 40 have been infected with CMV...Most people infected with CMV show no signs or symptoms. However, CMV infection can cause serious health problems for people with weakened immune systems, as well as babies infected with the virus before they are born (congenital CMV)."


CMV is often found in child care centers. I was unaware that cytomegalovirus (CMV) was an occupational risk for daycare educators when I became a licensed home daycare provider in Maryland in 1987. I didn’t know that CMV could devastate my pregnancy with Elizabeth, who was born severely disabled by congenital CMV in 1989. Today, most U.S. daycare providers are still not aware of their increased risk for contracting CMV. According to the New York TimesCMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (2016).


At the time of Elizabeth’s birth, I was operating my licensed home daycare center and volunteering in our church nursery, additionally putting my pregnancy at risk. Elizabeth was born with an abnormally small head, known as microcephaly, was profoundly mentally impaired, legally blind, and had cerebral palsy. After her birth, I was given information from the Centers and Disease Control Prevention (CDC) informing me 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 of her. Nowhere in my daycare licensing literature or training was CMV mentioned. CMV prevention measures were not discussed in my prenatal doctor visits.

Though Elizabeth grew into a very cheerful girl who won the "Best Smiling Award" at school, she couldn't hold up her head and lived as a three-month-old for 16 years, requiring several surgeries such as spinal fusion. She developed epilepsy and was gradually losing her hearing by the time she died at 16 during a seizure in 2006 while we were living in New York. I had a bad dream shortly after Elizabeth’s death about new parents wondering why I hadn’t done more to warn them about the precautions to take against CMV. Although I wrote about Elizabeth’s adventurous life with her tomboy sister and a series of dysfunctional pets, including a homeless older dog that joined her on the couch in my memoir, “Anything But a Dog: the perfect pet for a girl with congenital CMV,” congenital CMV still remains largely unknown.

In 2010, my husband and I moved to Connecticut. In 2012, I received an email from a distressed grandmother about her grandson born with congenital CMV in a Connecticut hospital (I am the parent representative of the Congenital Cytomegalovirus Foundation). The mother of her grandson was a high school student interning in a Connecticut daycare center. The young mother, just like me over 20 years earlier, was unaware she was putting her pregnancy at greater risk by working in daycare with young children.  When I visited the family in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why haven’t you launched an awareness campaign?"

I explained to the nurse that CMV parents, scientists and doctors have been trying for years to raise awareness, but the real risk of CMV to pregnancies remains little discussed—a real tragedy for daycare workers in light of recommendations in light of the fact that every year, 8 - 20% of caregivers/teachers contract cytomegalovirus (CMV). The American Academy of Pediatrics recommends counseling caregivers of their increased exposure to CMV, importance of hand-washing, and avoiding contact with urine, saliva, and nasal secretions. Mothers of children in daycare are also at increased risk for CMV (Pass et al., 1986).

According to the study published in 2016, “Child Care Provider Awareness and Prevention of Cytomegalovirus and Other Infectious Diseases” by Rosemary Thackeray and Brianna M. Magnusson, “Women who are exposed to CMV prior to conception or within the first trimester of pregnancy and seroconvert have increased risk of their infant being infected with CMV.” Despite a daycare worker’s high risk of contracting CMV, only 18.5% of licensed “in-home” daycare providers have heard of it. The authors also state: “Providers do not know how to appropriately sanitize surfaces to reduce spread of disease.” For example, many providers use diaper wipes to clean a surface, but diaper wipes alone do not sanitize it. “Awareness of CMV and how to prevent transmission of infectious disease is low. Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases.”

In 2015, I collaborated with members of Anna Warner Bailey DAR Chapter (members wrote letters and invited me to speak on the topic), medical professionals, and CMV families to help Connecticut become the second state in the U.S. to pass a CMV testing law, which was featured in Cornell Alumni and Connecticut magazines in addition to the New York Times. 

Other successes include:
  • The MotherToBaby.org Education Committee updated their CMV fact sheet to add a question specific to occupational exposure.
  • Child Care Aware plans a blog post on CMV.
  • 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, though my ultimate goal is for CMV prevention to be included in the required training for licensing.
  • Occupational Safety and Health Administration (OSHA) is now working on publications to provide CMV prevention education for childcare workers in daycare centers nationwide. 
COMMENDATIONS
My current 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 co-authored book, Caring For Our Children, which includes “Standard 7.7.1.1Staff Education and Policies on Cytomegalovirus (CMV).
To that end, I provide presentations and educational materials for the whole family to stop the spread of CMV. I have lectured for several organizations such as the Centers for Disease Control and Prevention, Society of Maternal Fetal Medicine, Maternal and Child Health Coalition, Infection Control Nurses of Connecticut, and Siemens Healthcare Diagnostics. Presentation titles have included:
  • What Caregivers and Pregnant Women Need to Know About CMV
  • Congenital CMV and Research 
  • Connecticut and Congenital CMV
  • How a Parent Can Raise a CMV Prevention Message (including how to get a law passed)
I also interview health and wellness experts on the Lisa Saunders TV Talk Show (SEC-TV, channel 12), which is uploaded to YouTube. I write extensively about CMV for my Congenital CMV blog, press releases, newsletters, and articles and manage the Facebook pages CMV in Child Care and Congenital CMV News). I coordinate CMV educational campaigns through workshops, televised public service announcements, and health fairs, and through behavior change programs such as “Keep Your Cups to Yourself” and hand-washing. 

My other CMV work includes:
  • Promoting CMV prevention programs to target populations such as child care workers and women of childbearing age by utilizing existing resources created by the National CMV Foundation, Congenital CMV Disease Research, Clinic and Registry, Congenital Cytomegalovirus Foundation, Centers for Disease Control and Prevention (CDC), and National CMV Registry for Pregnant Women (part of the CMV Research Foundation Inc.), in addition to other birth defects prevention organizations.
  • Consulting regularly with the country's leading CMV medical experts.
  • Contacting relevant organizations requesting CMV education be included in training materials, literature and websites. Currently in touch with agencies such as Occupational Safety and Health Administration (OSHA), Child Care Aware of America, March of Dimes, and a daycare union. 
  • Consulting with legislators to create CMV prevention education laws--particularly in regard to daycare centers. 
  • Reporting on CMV awareness and prevention among daycare workers and employers. 
  • Maintaining an extensive bibliography with live links to resource articles and presentations.
  • Researching health promotion and disease prevention campaigns through national observances: January: National Birth Defects Prevention Month; February: International Prenatal Infection Prevention Month; June: National Congenital CMV Awareness Month. In 2011, the U.S. Senate passed legislation recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children”; October: 15 - 21 International Infection Prevention Week; October 15: Global Handwashing Day

MY BOOKS, VIDEOS, AND OTHER RESOURCE MATERIALS
  1. Coloring book: Once Upon a Placemat: A Table Setting Tale - CMV prevention tips from “Miss Cup” (2016
  1. Fun, Free Teaching Toolkit for Students and Their Families: "Grandma" uses Miss Cup to enforce germ prevention and uses Mr. Knife's fear that the dish will run away with the spoon to teach table-setting in the educational coloring book, "Once Upon a Placemat: A Table Setting Tale." Tool kit includes: Placemats--Side one: Placemat with tableware characters with space for your coloring artist's name (perfect for laminating and using as a table-setting reminder) plus there is space available for an organization's information if so desired before copying. Side two: Germ prevention tips and hand-washing instructions. Video geared to children introduces the placemat characters and how to download free placemats
  2. Music/image video about my daughter’s life: Girl with congenital cytomegalovirus (CMV)
  3. Memoir: Anything But a Dog! The perfect pet for a girl with CMV (Unlimited Publishing, 2008, Thousand Books, Japan, 2017)
  4. Booklet: Surviving Loss: The Woodcutter’s Tale: Fairytale about losing a child plus moving forward (2013)
  5. Mystic Seafarer's Trail: Misadventures trying to get thin and famous so people will hear about CMV (2012)

MY ARTICLES, TESTIMONIES, PRESENTATIONS

ARTICLES AND TV INTERVIEWS THAT INCLUDE MY COMMENTS OR CMV WORK

My CMV presentations include: 

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.
See study: https://clinicaltrials.gov/ct2/show/NCT01376778

Maternal and Child Health (MCH) Coalition, Hamden, CT (December 13, 2016)
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/.  

Connecticut and Congenital CMVwww.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 ConferenceSan 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