Each year in the United States alone, approximately 30,000 children are born with congenital CMV infection, putting them at serious risk for brain malformations, which can lead to deafness, blindness, cerebral palsy, developmental disabilities, seizures, feeding disorders, behavior disorders, even death. It is estimated that hundreds of thousands, if not millions, of children and adults in the United States are living with congenital CMV. In addition to this, millions of lives, including parents, families, and caregivers, are affected by congenital CMV.

CMV is the most common congenital infection in the United States and is the most common cause of birth defects and disabilities. More children are adversely affected by congenital CMV than by several better-known childhood diseases. The Centers for Disease Control and Prevention (CDC) reports that 1 in every 150 children is born infected with congenital CMV. Estimates for more visible diseases and disabilities include:

• Autism – 1 in 150
• Down Syndrome – 1 in 3,357
• Spina Bifida – 1 in 2,500
• Fetal Alcohol Syndrome – 1.5 in 1,000

Then why haven’t you heard about congenital CMV until now?

Congenital CMV has infected millions of children worldwide and has left them with lifelong disabilities as professionals have researched to learn more about the virus. CMV research is relatively new in comparison with other diseases and illnesses with one of the earliest CMV researchers, pathologist Dr. Ribbert, first observing CMV inclusion-bearing cells in the kidneys of a stillborn infant in 1881. Over the next 20 years, similar cells were present in the salivary glands of children who had died of various causes. During the 1920s, CMV was thought to be due to a virus and in 1950, it was discovered that the infection most likely occured in utero. In 1960, another pioneering CMV researcher, Dr. Weller, proposed the term "cytomegalovirus" and CMV was successfully isolated in the urine of infants with active CMV infection. In the last 30 to 40 years, more great strides have been made in the field of CMV research, including the development and administration of antiviral treatments to pregnant women and babies infected with CMV. Vaccine development has also begun within several medical and research bodies, as well as pharmaceutical firms around the world.

But basic CMV information and awareness has been slow to spread amongst medical professionals and the general public. According to a 2006 survey of women, 22% of respondents had heard of CMV and there was a low level of accurate knowledge about CMV. For many years, the National Congenital CMV Disease Registry has been the primary CMV presence online offering families of children born with congenital CMV services including the Parent-to-Parent Support Network and the CMV Updates Newsletter, in addition to maintaining and growing their Registry Database.

More recently, the CDC has worked to increase the visibility of congenital CMV and distribute CMV awareness messages within the general population. Over the years, several parent support groups have formed online, including the CMV Listserv and a handful of groups established on social networking websites. Within these groups, CMV parents have introduced themselves, sought advice and comfort from their peers and discussed what greater work could be done on behalf of congenital CMV. What has been lacking in the CMV movement has not been desire or motivation, but we have not been able to harness the power of this "crowd" to this point to work together to achieve planned objectives. The movement is fragmented and confused and parents many times are frustrated and looking to a place to put their hope and their support.

More than ever it has become evident--the tipping point is now. This is evidenced by the sheer magnitude of congenital CMV’s impact, largely unseen or recognized until now. The estimated number of diagnosed cases surmounts those of other medical conditions and birth defects and the cost impact of congenital CMV children is rising with every year and every new diagnosis. Clinical trials are moving towards a CMV vaccine and technologies such as the internet allow and enable the collecting and focusing of a CMV "crowd", a crowd so desperately needed to ignite and push forward the change that will truly change the face and body of this movement. All those affected–children, parents, families, friends, professionals–are the face of congenital CMV.

At STOP CMV, we want to strengthen and mobilize this movement to get the quickest traction. Embracing and extending a known entity will allow for this and STOP CMV, along with the CMV Action Network, its supporters, volunteers and board, are up for the challenge and look forward to a future of action and change. Our mission is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. We envision a world in which no babies are born with congenital CMV. Families coping and living with congenital CMV thrive in a barrier-free world that offers ready access to an array of effective treatment options and uniformly excellent medical care. Their individual life choices are not influenced by congenital CMV and all experience rich and personally fulfilling lives.

STOP CMV was originally formed by a CMV mother in 2003 as a grassroots organization with a basic, informative, virtual presence online, with the goal of working to foster awareness in communities via public awareness campaigns. The CMV Action Network, also formed in 2003, is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. We realized that the incidence of children born with congenital CMV could be greatly reduced with grassroots public education and awareness, and we’ve already seen success within our families, associates and the public as we have told our stories and promoted CMV awareness and prevention measures.