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/
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,
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. |
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/f
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.
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.
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
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:
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
No comments:
Post a Comment