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Advocating for Newborn CMV Screening through Hospital-Based Initiatives

Author: Maggie Kettler, AuD CMV newborn screening has increased tremendously in the past decade, with many states implementing the screening through legislative efforts. However, CMV screening legislation is not a realistic avenue in all states. In this blog post, we hear from Maggie Kettler, AuD, who has helped to lead successful efforts to increase CMV newborn screening in her home state of Ohio. In this post she discusses successes, challenges, and advice she has for advocates in other states. 

Acquired CMV: Intro and Symptoms

If you have been affected by congenital CMV, it’s very possible that someone else in your life has also been affected by CMV, but in a very different way. It could be your grandmother who suffered from CMV complications during chemotherapy treatment to fight cancer. Or maybe a family friend who contracted CMV after a successful transplant surgery. 

New conception recommendations for Zika and CMV

The Centers for Disease Control and Prevention (CDC) has issued new recommendations for women hoping to get pregnant after possible exposure to Zika virus. Most people infected with Zika virus won’t even know that they have the disease because they won’t have symptoms. Like Zika virus, most women who contract cytomegalovirus (CMV) will not experience any symptoms and may not even know that they have been infected. 

Share your CMV story with National CMV

Perhaps no one is able to give greater insight into living with congenital CMV than the parents of children and adults born with CMV. According to the CDC, each year 1 in 150 children is born with CMV and 1 in 750 will experience disability because of CMV. These high statistics reinforce CMV as a public health concern, but we need to show the world our thousands of children. We need to be the visual, vocal, visceral standard bearers of congenital CMV.

CMV Awareness Flyers

Help us raise awareness of CMV--share, post, and print our awareness flyers and help educate pregnant women, practitioners, and the public about CMV. Post and distribute flyers in public meeting places, such as OB/GYN offices, pediatrician offices, family practice offices, daycares, preschools, college health centers--anywhere where at-risk populations congregate, work, or socialize. National CMV awareness flyers are now available in over 30 languages. 

Back to the basics with CMV expert, Dr. Gail Demmler-Harrison

New to the issue of cytomegalovirus? Fancy yourself an expert on all things CMV? Wherever you are in your experience (or lack thereof) with CMV, it's always important to freshen up on the basics from time to time, especially as medical research may develop and policies may change. We recently had the opportunity to catch up with longtime CMV expert and advocate Dr. Gail Demmler-Harrison from Baylor College of Medicine and Texas Children's Hospital. For over 30 years, "Dr. Gail" has become the de facto expert on infant diagnosis of CMV, as well as treatment and development of children born with congenital CMV while spearheading the National Congenital CMV Disease Research Clinic and Registry

Share your photos and videos at the CMV Conference

Want to show off your child and tell your story at this year’s CMV Public Health and Policy Conference? The National CMV Foundation is seeking photos of children affected by congenital CMV for display at the upcoming conference this September in Austin, Texas. Conference organizers are also requesting video submissions from parents discussing their experience with CMV and how it has affected their life. 

Attorney and advocate, Sara Beth Myers, discusses Tennessee's CMV legislation

Tennessee recently became the sixth state in the nation to pass CMV legislation in its second year after introduction. Tennessee Senate Bill 2097/House Bill 2397 received unanimous supporting votes in both the House and the Senate and faced no opposition from outside groups in its second year. But how? And why? We spoke with Sara Beth Myers, attorney and founding President of AWAKE - Advocates for Women's And Kids' Equality, who spearheaded the Tennessee effort to learn more about the process and their unique approach to this year’s successful legislation. 

2016 CMV Public Health & Policy Conference

Come join the National CMV Foundation at the second CMV Public Health & Policy Conference on September 26th and 27th in Austin, Texas as we present the latest research on diagnosis and treatment of CMV, delineate prevention efforts, provide information about early intervention options, and disseminate family support resources. 

The Real Story of Congenital CMV

Imagine giving birth to a baby and finding out that your baby was exposed to a dangerous virus during your pregnancy. This virus, cytomegalovirus (CMV), could have a questionable impact on your child's development and prognosis and you have no outlook as to what your child's life and medical situation would be. 

CALL TO ACTION - Senate Appropriations Subcommittee discussion of CMV

On Thursday February 11th, the Labor, Health and Human Services, Education, and Related Agencies Subcommittee of the United State Senate Appropriations Committee will hold a hearing entitled "Emerging Health Threats and the Zika Supplemental Funding Request". Testifying at this hearing will be Dr. Thomas R. Frieden, Director of the Centers for Disease Control and Prevention (CDC), and Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID).