Blog

A Mother's Fight: Maine's CDC CMV Recommendations

Author: Laura Sweet LD 87 was referred to the Legislature’s Joint Standing Committee on Health and Human Services and a public hearing and work session took place in February 2017. The whole process moved much more quickly than I anticipated. We gathered other families and supportive members of Jane’s medical and early intervention teams to testify alongside us. The Committee voted not to pass the bill, but with the understanding that the Maine Center for Disease Control and Prevention (CDC-P) would convene a multi-disciplinary work group to review issues surrounding congenital CMV and make recommendations to the Committee within a year.

Meet the Founders: Kristen Hutchinson Spytek

Kristen is the current President of the National CMV Foundation. Read as she recounts her personal journey along with pertinent CMV information from her guest blog on MotherToBaby.org: "CMV. The Most Common Viral Infection Affecting Newborns That You've Never Heard About".

How family and friends can support loved ones affected by CMV

​There is a very old saying that goes, "It takes a village to raise a child." When that child has special needs, this is especially true. Family and friends are a critical part of life when you have a child with CMV, but sometimes it's hard to know what to do. National CMV can help you learn more - about CMV, about the special needs each child might face, and about what your family member or friend might need most right now.

Tech exec/CMV dad discusses raising CMV awareness online

Silicon Valley executive Wade Chambers has not only sat on the board of directors of both the National CMV Foundation and Stop CMV, but he also has twin daughters born with congenital CMV. Wade's professional past in tech has seen stints at Netscape, AOL, Opsware, and Yahoo, but his current role is serving as a Vice President of Engineering for Twitter. We sat down with Wade to get his insights into how the issue of CMV can leverage exising and emerging technologies to raise awareness and encourage advocacy. 

Remembering Aedan

The tremendous loss that we experience -- as parents and as a community -- when a child sucumbs to the effects of congenital CMV cannot by overstated. We see ourselves in each parent's experience and we extend our love and hope to all children born with CMV, much like we would our own. 

How has congenital CMV impacted your life?

Author: Parent Perspective National CMV is helping to produce a display that will communicate the impact of congenital CMV, not just on children, but on their parents and families. We realize that countless families struggle to cope with a congenital CMV diagnosis in their child and will also, unfortunately, experience additional stress and difficulty both inside and outside of the family home. We would like to capture these thoughts and insights from those parents and family members who are willing to participate and to display them anonymously to help educate the public and professionals about the true impact of congenital CMV within the family and home. 

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.

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. 

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. 

Meet the Founders: Annie Culley

Author: Annie Culley I started having symptoms around Valentine’s Day 2012. I had periodical episodes of blindness and eye flashes. I consulted with my Optometrist and he thought that I was maybe having blood clots caused by the birth control I was on. So off I went to my reproductive specialist. He pulled me off of the pills until I was able to finish all of the tests to determine what was wrong. I got progressively more and more sick. My blood pressure went through the roof; I had numbness and tingling in my limbs, horrible headaches, muscle twitches, shortness of breath, aches and just felt totally miserable.