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




Monday, November 7, 2016

What can you do to stop CMV, the #1 birth defects virus?

Ever since that recent New York Times article, "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed," people across the country are finally understanding the threat of the #1 birth defects virus, CMV. 


According to Clinical Advisor, "Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns to educate expecting mothers about congenital CMV."

Until our government and medical community invests time in preventing CMV through raising awareness as they have Zika, there are ways you can help protect the unborn from this aweful suffering, plus save millions dollars in medical costs. Depending on your interests, time and skill sets, you may be suited for raising awareness, funds, or promoting research. Limited in time? Just handing your primary care physician or local day care center a CMV prevention flyer to hang on their wall and/or bathroom stall can save lives and anguish (see image below for a simple flyer created by the National CMV Foundation).


If you are really ready to role up your sleeves, then ask your state to pass a CMV bill such as the one in Utah. I, along the CMV families and medical professionals, helped get one passed in Connecticut, mentioned in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika

There are several organizations you can join forces with to help prevent this tragedy until an effective vaccine is invented (see below my bio for a list with live links to them). Many have helpful flyers and news for sharing. 

At present, this is what I'm working on in case you are interested in collaborating on anything: 


Facebook: Congenital CMV News:https://www.facebook.com/congenitalcmvnews/ 

Day Care Centers: I'm trying to get the Occupational Safety and Health Administration (OSHA) to raise a CMV prevention/awareness campaign for day care workers, the way they do for outdoor workers in regard to Zika. I am also in touch with Connecticut's local union for child care providers, CSEA/SEIU Local 2001. I am still trying to figure out how to get the CT Office of Early Childhood webpage to include CMV prevention and to include it in their training for licensed day care providers (my CMV information was forwarded to their Division Director, Debra Johnson). (I also emailed
Jennifer Johnson, Director of Quality Improvement at Connecticut Office of Early Childhood,
jenn.m.johnson@ct.gov). Here is Utah's day care provider brochure:  http://health.utah.gov/cshcn/pdf/CMV/CMV%20What%20Childcare%20Providers%20Need%20to%20know.pdf. As a result of Utah's request to provide CMV prevention for their childcare workers, The Church of Jesus Christ of Latter-day Saints produced the following funny video, "Interview with a Germ: Communicable Disease Safety," which stars Rhonda Rhinovirus, a germ who loves to tell travel adventure stories, including those by CMV (which is a herpesvirus, like chicken pox). Watch: https://www.lds.org/callings/church-safety-and-health/training-and-video-resources/communicable-diseases?lang=eng. Here is my message to day care organizations: Former Childcare Provider Lists 13 Things You Should Know/Do About CMV--Much More Widespread Than Zika

Free Teaching Toolkit: I created free, downloadable placemats with germ prevention for coloring prevention with free, downloadable “color-me-in" placemats that includes a germ prevention tip from Miss Cup who insists no one share her.  Find the placemat at: https://drive.google.com/file/d/0B9Klfxar2CmjbWlfQlpGS3VDMlBXVklDN0JnM0lxa3lXRVpR/view   (I left space at the top for organizations to include their logo/info if so desired before printing copies). The placemat characters are from my booklet, "Once Upon a Placemat: A Table Setting Tale." Click on this short video to learn more about them. 

Public Speaking. My next talk is: 
January 26, 2017, 11:30am--Talk: "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.edu. Learn more about "A Randomized Trial to Prevent Congenital Cytomegalovirus (CMV)" at: https://www.clinicaltrials.gov/ct2/show/NCT01376778

Video: I made a short video of CMV prevention with images of my daughter's life and death with the disease. Watch: https://mail.google.com/mail/u/0/#inbox/1583f9b5fcbdabd5?projector=1

Book about child with congenital CMV--U.S. and Japan: I am working with Japanese medical professionals and publisher to get my CMV memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus),”   translated into Japanese to be released in Japan in December 2016. A book about my daughter's life,  “Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus),” was shown in the background of the live video interview with Dr. Demmler-Harrison embedded in the New York Times article, "CMV Is a Greater Threat to Infants Than Zika

Murder Mystery Writers: I'm contacting murder mystery writers in case I can interest them in--CMV and Agatha Christie's "The Mirror Crack'd from Side to Side"

Nurses: I'm contactinng nursing unions and organizations--Please Help Fight CMV--"Greater Threat to Infants" according to NY Times

About Me: 
Lisa Saunders is the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing, and the need to develop a vaccine. Saunders and her work to get Connecticut to pass a CMV bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media with interviews on Fox CT and News 8 at CT Capitol RE: CMV. She is the author of the memoir, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), which is also being released in Japan in December 2016. A short story about her daughter Elizabeth's life with congenital CMV is told through images and music on this three-minute video. To educate entire families in a fun and memorable way, Saunders recently published the short booklet,  “Once Upon a Placemat: A Table Setting Tale,” which includes CMV prevention tips such as refraining from sharing dishes plus a free teaching tool kit with downloadable placemats for coloring and a video. Visit Lisa at www.authorlisasaunders.com



ORGANIZATIONS THAT WORK TO STOP CMV:

CMV Registry, CMV Research and CMV Clinic Congenital CMV Foundation
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
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.aspxFlyer for the wall created by National CMV Foundation:


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