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


I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation and a CMV Awareness and Policy Advocate. I offer resources and presentations to prevent the leading viral cause of birth defects, congenital CMV.
According to the Centers for Disease Control and Prevention (CDC), congenital CMV disables over 5,000 babies a year in the U.S. Congenital CMV is estimated to cost the health care system $300,000 per child annually for a total of $1.9 billion annually.
CMV is often found in child care centers. When I was pregnant with my younger daughter Elizabeth, I was a licensed child care provider and unaware of my increased risk for CMV.
In 2015, I collaborated with medical professionals and CMV families to help Connecticut become the second state in the U.S. to pass a CMV testing law, mentioned in the New York Times article, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed (2016).

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).” These recommendations state that childcare workers of childbearing age 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 CMV awareness work includes:
  • Authoring 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.
  • Coordinating 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. 
  • 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 National CMV Foundation, Congenital CMV Disease Research, Clinic & 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), MotherToBaby.org, 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
2015 - 2017:  Results
  • Connecticut became second state in U.S. to require CMV testing when infant fails hearing screen.
  • Occupational Safety and Health Administration (OSHA) is now working on publications to provide CMV prevention education for childcare workers in daycare centers nationwide. 
  • The MotherToBaby.org Education Committee updated their CMV fact sheet to add a question specific to occupational exposure.
  • The Certified Industrial Hygienist of The Worker Institute at Cornell and Director of Workplace Health and Safety Program is currently writing an article on contagious diseases in the workplace for a labor website and will now include CMV.
  • 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.

My qualifications for CMV awareness and marketing 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 daycare provider. 
  • Former campus communications writer for the State University of New York at Rockland.
  • Mother of child who suffered from congenital CMV for 16 years.
  • International author of books providing a CMV prevention message.      

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.
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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)

My next CVM talk is January 26, 2017, 11:30am: "Congenital CMV and Research" at the 37th Annual Meeting of the Society of Maternal Fetal Medicine (1/23-28/2017). Caesars Palace, Las Vegas, NV. Research support staff deal with diseases in pregnancy to help find answers for prevention and treatment. This discussion will entail the story of a mother, Lisa Saunders, whose child was affected by CMV and her quest to raise awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. She needs evidence – based medicine to support her quest. The second part, presented by Brandy Sandra Firman, BSPH, BSDMS, of Drexel University, will cover the factors that affect pregnant women who volunteer to help researchers produce the evidence needed for disease prevention and treatment. This forum is meant to explore the reasons for participating in a research trial and the need for participation in a research trial from a patient’s perspective. Info: https://www.smfm.org/meetings/2-37th-annual-pregnancy-meeting or contact: Sabine Bousleiman M.S.N,M.S.PH, Program Director, Columbia University, OBGYN Department, (212) 305 4348 (office),  (917) 673 7790(mobile), sb1080@cumc.columbia.eduStudy seeking participants: https://clinicaltrials.gov/ct2/show/NCT01376778



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