- Every hour, congenital CMV causes one child to become disabled.
- Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year).
- Approximately 1 in 750 babies born are permanently disabled by cCMV. (Download CDC's flyer, What Women Should Know About Cytomegalovirus (CMV): http://congenitalcmv.org/CDCbrochure.pdf.)
In 2014, Fox CT interviewed me in my home with Dr. Brenda Balch, Connecticut's Early Hearing Detection & Intervention Chapter Champion, about H.B. 5147 and disabilities caused by congenital CMV (cCMV).
Why don’t doctors warn women of childbearing age about congenital CMV?
“CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route - treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program
I provide a one-page Congenital Cytomegalovirus (cCMV) Fact Sheet with additional pages for sources of information, including contact information for the county’s cCMV experts, on my blog at: http://congenitalcmv.blogspot.com. For more information about the Congenital Cytomegalovirus (CMV) Foundation, visit: www.congenitalcmv.org. You may contact me at LisaSaunders42@gmail.com
Here are reelected Co-Sponsors of HB 5147 (2014): Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov, Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov.
Sara Doutre, co-founder of the Utah CMV Council, stands beside a Utah bus advertisement for congenital cytomegalovirus prevention. Doutre is mom to Daisy, born with congenital CMV, and daughter of Ronda Menlove, the representative responsible for leading Utah to pass and enact the first U.S. CMV awareness and testing legislation (2013). For advice, contact Representative Ronda Rudd Menlove, PhD, Utah State University, Ronda.Menlove@usu.edu, or Sara Doutre at email@example.com
Lisa Saunders, Congenital CMV Foundation parent representative (mother of Elizabeth severely disabled by congenital CMV, 1989-2006), PO Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com (sent Letter of Testimony to CT’s HB 5147).
Amy Mirizzi, MPH, CPH, Early Hearing Detection & Intervention (EHDI) Program, Family Health Section, Connecticut Department of Public Health, 410 Capitol Avenue, MS # 11MAT, Hartford, CT 06134-0308. Phone: (860) 509-8175, firstname.lastname@example.org, http://www.ct.gov/dph/ehdi
Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, email@example.com (sent Letter of Testimony to CT’s HB 5147).
Casey Famigletti of New Canaan, Connecticut, mother of child born disabled by congenital CMV (sent Letter of Testimony to CT’s HB 5147).
Rep.Ronda Rudd Menlove, PhD, Utah House of Representatives and Senior Vice Provost, Utah State University. She was the representative responsible for passing and enacting the bill in Utah (2013) and has offered to advise CT politicians about the legislation and needed funding. Contact 435-760-2618, Ronda.Menlove@usu.edu or visit the Utah CMV Council.
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, firstname.lastname@example.org (click on Utah's Children's Hearing and Speech Services to download English/Spanish pamphlets for daycare providers, doctors and parents).
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus) and co-founder of Utah CMV Council. email@example.com (sent Letter of Testimony to CT’s HB 5147).
CDC: Michael Cannon, Ph.D. firstname.lastname@example.org, a research epidemiologist at the Centers for Disease Control, Atlanta, Georgia. Dr. Cannon is develops strategies to prevent congenital CMV infection through public awareness and education.
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. Contact: 832-824-4330, email@example.com. The CMV Registry supports CMV research, disseminates information and provides a parent support group (sent Letter of Testimony to CT’s HB 5147).
Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at firstname.lastname@example.org, or visit www.congenitalcmv.org. The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. email@example.com (sent Letter of Testimony to CT’s HB 5147).
Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu