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 Dancing With Shards of Glass Image

Dancing With Shards of Glass

Author: Andrea Stambaugh A few weeks ago we went to The Kids Equipment Network to pick up an adaptive stroller/wheelchair for Axel. 

I have been fighting to get Axel a wheelchair for months. I had prepared myself in my mind. I was so excited for getting out of the house to be simpler. We talked about it the entire drive. Once we got there, they wanted us to put Axel into the wheelchair so they could fit it appropriately. I set him in the perfectly supportive bright green chair and I strapped him in. He looked up at me with a big smile, the way he always does. I smiled back. But, then it hit me. Like a ton of bricks. I just strapped my child into a wheelchair, for the first time. And I lost it.

 The Baby After the CMV Baby Image

The Baby After the CMV Baby

Author: Megan Nix My husband and I always knew we wanted a third child, even after our second daughter, Anna, was born with congenital CMV. Even though Anna’s needs (deafness and motor delays) require more time spent in therapies and doctors’ offices than we ever expected, Luke and I both came from bigger families, we wanted to gift our daughters with another sibling, and, I have to admit, I wanted another chance at a typical experience of pregnancy and motherhood.

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Thank You Wristband Buddy

As part of our fundraising and community outreach efforts, we are pleased to mention that WristbandBuddy has offered us 200 free silver bands to spread awareness about our cause. Thank you WristbandBuddy for your contribution and support.

 Help Childcare Providers Fight CMV Image

Help Childcare Providers Fight CMV

Author: Lisa Saunders I'm a former licensed childcare provider who, like many across the United States, had never heard of my occupational risk for CMV, the #1 viral cause of birth defects. CMV is often found in child care centers. I was unaware that cytomegalovirus (CMV) was an occupational risk for daycare educators when I became a licensed home daycare provider in Maryland in 1987. I didn’t know that CMV could devastate my pregnancy with Elizabeth, who was born severely disabled by congenital CMV in 1989. 

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Rare Disease Day

Author: Emily Walsh Rare Disease Day was first established by the health organization EURORDIS in 2008 to bring greater awareness to conditions that typically escape widespread notice. Rare diseases are also known as orphan diseases, as they typically impact only a fraction of the population. It may not seem like a lot, but currently one in ten Americans are living with a rare disease. Congenital CMV is considered a "rare disease".

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

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.

 3 Ways to Support National CMV on #GivingTuesday Image

3 Ways to Support National CMV on #GivingTuesday

#GivingTuesday is a global giving movement that has been built by individuals, families, organizations, businesses, and communities in all 50 states and in countries around the world. This year, #GivingTuesday falls on November 28. Join us by making a charitable gift as we work to #stopCMV.

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Happy Thanksgiving!

Wishing you a happy Thanksgiving and holiday season!

To our parents, advocates, ambassadors, donors, and experts, thank you for your continued support in raising awareness and educating others about congenital CMV.

 CMV awareness is dangerously low as compared to other congenital diseases Image

CMV awareness is dangerously low as compared to other congenital diseases

Even though congenital CMV is the leading viral cause of congenital disabilities and the leading non-genetic cause of childhood hearing loss, most adults have never heard of it. 

 The CDC Releases New CMV Materials Image

The CDC Releases New CMV Materials

The Centers for Disease Control and Prevention (CDC) released two new resources for health care professionals about congenital CMV in June 2017, National CMV Awareness Month. The information sheets, produced and published by the National Center for Immunization and Respiratory Diseases (NCIRD), provide much needed information for healthcare providers who work with two distinct populations affected by congenital CMV—pregnant women and their newborns.